Ready Go: Battling Endometriosis

2011-03-12T14:28:00.000-08:00

Woops

2011-02-24T19:00:00.000-08:00

Posted on the wrong blog...again!!!

2010-07-06T22:23:00.000-07:00

Hello...Goodbye...

2010-05-06T20:09:00.000-07:00

I'm writing on a new blog now. I'll stop back by this one from time to time to write about endo, life, marriage, Tayla, Ben, the whole lot. But I'm going to be writing on that blog quite a bit now. It's anonymous, but you might be able to tell it's me. I'm going to follow a lot of you still who I have been reading from this blog... know I'm thinking about you, even if you don't see my name on any comments. It might still be me :)

Endometriosis Awareness!

2010-03-24T09:05:00.000-07:00

What an awful, awful blogger I am. I've been gone for months! BUT...what better time to come back then the last week of Endometriosis Awareness Month? It's constantly on my mind, believe me. Even though I really would prefer that it's not because endo is mainly on my mind due to some pain or discomfort...but I'm so proud to say that I'm part of the endo community. It's a strong group, a powerful population! I mean, think about it. There aren't a lot of people who can say they've been through what we've been through. From the doubling-over pain, to the awkward digestive problems, to the devastating fertility loss. Most of us have faced insurmountable odds, and we're still here. We're still walking, breathing, being. And we're standing up to say "hear us- we have a story to tell, we're not alone, and we're incredibly important"! Ladies, all of you are so impressive to me. The stories I read, the heartache, the tears, the pain, and the victory, keep me going. Without this community of women who have been through what I'm going through, I don't know where I'd be or how I'd be doing. I'm incredibly grateful.

Along with that, I have to give a shout-out to the husbands, the boyfriends, the parents, siblings, friends and family- all of the people who have supported an endometriosis sufferer. It's not an easy spot to be, watching a loved one suffer on the inside without signs of pain on the outside. This disease is a hidden monster, and without the love of my family, friends, and wonderful husband- I could not have realized all of my victories! One foot in front of the other, breathe in and breathe out. Cry. Smile. And keep going.

Remember us this last week of March...and beyond. I'm thinking of all of those strong and powerful women who are suffering today, and everyday. Keep fighting, the battle continues!

I Did It!

2010-01-18T08:51:00.000-08:00

I completed a Half Marathon yesterday, and I ran the entire thing! I'm so proud of myself for not stopping even after I cramped up and the pain started showing it's ugly head... I just kept running! I actually finished it in 2 hours and 15 minutes- right where I wanted to be (my super crazy goal was 2:10, so I was definitely pleased with 2:15)! The run went pretty well- I started out nice and easy, felt really good at the three mile marker where I got to see my Mom and Ben :). Then around mile 4 I got a sharp pain in my left calf, which is swollen now and really tight. I might have pulled it, I'm not sure. But it went numb and I was good to go around mile 5. But mile 7 or so brought the overall fatigue. I was soooo glad to see my Mom and Ben again at mile 9 (right where the big hill started). I needed that extra little motivation because I was about to stop and walk- but I kept going! Right around mile 10 is when the STUPID endometriosis really kicked in. I felt like my uterus was going to fall out. Bastard. I got really bad lower abdomen cramps, then some sharp pains, then the grumbling. I thought I was going to have to sprint to a port-a-potty but the lines were ridiculous and I really didn't want to stop. So I just kept going and man was it uncomfortable! For those of you with endo- you know what I'm talking about. Don't want to go into details, but endo comes with some not so lovely "bowel" problems usually. I think having stage 4 endo might contribute to that- I'm not sure.

Anyway, I kept on going and tried to think of other things. That was pretty easy with the race atmosphere. It was the PF Chang's Rock and Roll Half Marathon- so they had live bands playing at every mile marker. And there were 30,000 people running that day. SO lots of people watching while I was running. Plus, I made an awesome playlist that kept me rocking the whole way.

So when I saw Ben and my Mom for the last time it was a half mile from the finish line and I had to take off. I sprinted the last half mile and finished at 2:15. It felt great to finish strong, but man am I paying for it now :) Having a little trouble walking, my left knee is swollen, my left calf is worthless, and my hips are on fire. I've got a hot stone massage at 3:00 today that will be phenomenal!!!

Yay for achieving some athletic success once again. It feels good, and I've missed pushing my body beyond my comfort zone. I might want to make this a habit... ;)

Just keep running

2010-01-05T18:14:00.000-08:00

I'm about to leave for a 9-10 mile run. What? Really? 9-10 miles? That's crazy! I even love writing it. Now let's just see if I can run it.

Lots of exciting things going on at work right now. I have a new corporate committee I'm a part of that's kind of exciting. Plus I've been put in charge of hiring for my division, so that's a lot of work but should be rewarding. I also have a couple of initiatives I'm working on specifically within our division which should be good. It's nice to have something that I own, that I can feel proud of.

I spent some time yesterday looking at endometriosis support groups online. I haven't done that in a really long time. I've just kind of accepted the disease as normal and gone with it...but this blog has been such a big help (back when I was actually blogging) and I had forgotten how important sharing and learning from others with the disease really is. I've done way too much research on endo in my day, so if anyone has any questions about it, please let me know. Obviously I can just rattle off research and my own experiences...by no means am I a doctor! But I've been through mad amounts of pain, plenty of time being misdiagnosed, two laparoscopies, a stage 4 endo diagnosis, Lupron for three months, countless ovarian cysts ruptures, and lived through it all. SO any support or help I can offer, that's what I want to do.

Just thought I'd put that out there :)

What a decade.

2009-12-30T11:53:00.000-08:00

Tomorrow is the last day of the decade (in my eyes...I mean I know there are those who would say that it's not until 12/31/10...but I personally disagree, because I'm stubborn...). In any case, oh what a decade!

I remember sitting in a middle school gymnasium on 12/31/99 with a bunch of my church friends...I was just a high school kid. We were waiting for something big. Instead, we ate too much popcorn and soda, and slept.

I remember getting into Stanford and wondering if they had made a mistake. They paid for me to come see the campus. They flew their head coach out to visit me, to recruit me. But I still couldn't believe it.

I remember visiting my brother in college, and meeting his future wife for the first time. They were "just friends". I knew better.

I remember falling in love for the first time, and not knowing any better. I remember crying, fighting, running, coming back, and starting all over. I remember wasted time.

I remember feeling young and invincible. Never sleeping, always going. And finally crashing and burning.

I remember victory. The smell of chlorine in a beautiful natatorium, the feeling of the water being colder than I could stand. The pressure. The nauseau. I remember starting the race, and forgetting the rest, until we saw our record!

I remember pain. Surgery after surgery. Health problem after health problem. Always waiting for the end of the struggle and the beginning of "life". Pushing through anything I could, crashing, getting up, trying again. I remember hospitals, wrong diagnoses, pain medication, hoping, crying, quitting, and getting back up again.

I remember graduating from college. I remember the feeling of pride and true accomplishment.

I remember retiring from swimming. Swallowing a huge lump in my throat for months, wishing I was back like the old me. Giving up hope, shutting it out. And then, I remember the first time I thought I could do it again.

I remember failure.

I remember Tayla as a kitten. Scrawny and timid.

I remember family. The birth of two beautiful lives new into our family. Two reminders of what it's all about. Watching them grow into little personalities. Hoping I'd be able to experience birth myself. Feeling supported by a strong bond of people who will always be there for me. I remember feeling incredibly blessed.

I remember true love. When I least expected it. I remember wondering and butterflies. I remember praying that he was it. I remember realizing that he actually was. I remember safety, comfort, and laughter. Then, the most important question I've ever answered, and the best way of asking it I've ever heard of.

I remember the most wonderful day in all of my life. I remember pure joy. Beautiful music. Tears. Shaking hands. The perfect words. The best dance. And a first kiss as Mr. and Mrs.

I remember signing a paper and commiting to a home of our own. Feeling like real grown ups, the weight of the world on our shoulders but not a care at all. Almost losing it, and then locking it down and opening a door!

I remember feeling satisfied. Feeling like my life is truly being lived for the first time, like I've found my purpose and I'm succeeding. I feel accomplished and proud, and I finally feel settled. It's been an unbelievable decade. I have so much to be grateful for, especially the fact that in all of the health problems, the scares, the struggles, and the doubt- I could write this beautiful list of memories with only a fraction of time spent on sorrow. How blessed am I to be able to look past the clouds, see the silver lining, and know that it all happens for a reason. Here's to the next 10 years of surprises, roller coasters, and happiness!

I hope all of you look back with full hearts and good memories that mask the pain that so many of us have felt. I hope you, too, have had 10 years to remember!

Sleepy

2009-12-28T17:31:00.000-08:00

I'm feeling extra groggy this evening...still at work and waiting to get out of here (30 minutes past the end of my shift and counting...) I wish I was at home curled up in a blanket and watching our new 55" beauty! ;) But of course, thinking of that reminds me that I really need to go for a run. I did 4.5 miles yesterday when I tried to do 6, so that felt like a failure. Ben and I are heading to a running store tonight to pick up some new shoes. Only 20 days until the Half Marathon!!

I've been thinking a lot more about the big baby question of 2010. With the holidays and my little niece and nephew around, it made it all that much more difficult. You know what's the worst- when you mention "infertility" and everyone (I mean Everyone) says "oh you never know what could happen...don't give up on it...it's when you stop trying that it will happen..." I mean, do they even know what I'm talking about? How can one say something like that when they don't know the full details? Hope is a very sensitive thing. I came to accept the fact that Ben and I won't get the joy of "trying naturally" or the unexpected BFP. I'll be on birth control right up until I start IVF. I'll actually be taking hormones to avoid getting pregnant... I don't want to hear that there could be hope. It was hard enough to accept, but I did. And there's nothing wrong with that. So, here's to hoping that the IVF way can be just as beautiful as anything else.

Grumbling

2009-12-15T14:28:00.000-08:00

My stomach is not so good today. It started yesterday morning- I don't know what it is really. But did I mention to you all that I was violently ill TWICE on my honeymoon? Oh yes, twice. The luckiest of them all right here. Let's be honest though, Ben got the short end of that stick. He actually held my hair back as I vomited over the side of our bed the morning after our wedding. Lovely. haha! You're stuck with me now babe!

Yes, I took some expired Zinc the morning after our wedding and was violently ill for about 8 hours. We went to Urgent Care that day because I was so dehydrated that I couldn't walk...our first day in honeymoon bliss. We sat in the waiting room for over an hour. Luckily it only lasted 8 hours. But three days later, after enjoying a wonderful day at our all-inclusive resort on the beach of Playa Mujeres, I ended up right back in the same spot- brand new hubby holding my hair back. I was up all night, pacing back and forth from the bathroom to the bed. Decided to just wait this one out and about 8 hours later I was good to go. No other symptoms. Just horrifically ill.

Well, today my stomach is bringing back not-so-lovely memories of our glorious honeymoon. There weren't very many sad memories, but those were two of our not-as-great ones. :) It's not anything like that right now- I'm not violently ill at all. Just having some stomach problems. And I'm supposed to run 5 miles today!!! With my boss no less! Ha...this could get ugly. "Um...you go ahead, I'm gonna stop at this gas station for a bit...but I'll catch up! Yeah, it's just a leg cramp. That's it..." lol

3 Miles

2009-12-13T07:41:00.000-08:00

So it ended up being a three mile run on Thursday- and I felt pretty good. I could have gone four probably, but I hadn't run for a while, so I didn't want to push my knees...they were a bit achey the entire time. I'm gonna try to go run 4 today and then I have 5 on Tuesday with my boss and another coworker.

Ben and I went to my parent's annual wine tasting Christmas party last night! They have become famous for their parties, this was no exception. Last year the food was more elaborate, and this year they asked guests to bring a dessert to share, as well as a white elephant gift! So it was much more relaxed and casual. But those parties wear me out! I'm a talker for sure, I've always been really social...but when it's 75 people of which most know me...that's a lot of talking! We answered a ton of questions about the honeymoon, married life, newlywed drama- the lot. I think it's hysterical when someone comes up to us and asks how the newlywed life is going and if we're happy. What if Ben and I just started off with "Oooh, yeah, it's been tough. Before the wedding things were good, but since...we've been struggling quite a bit. A lot of fighting, much more bickering- it's not good..." Hahaha, I'd love to see there faces! That's not at all how we feel thank goodness. But those questions are really rhetorical- there's one answer allowed: "Oh we're so great! We're having a lot of fun, furnishing the house, decorating, settling in after so much wedding planning! And what's that? The honeymoon? Oh it was to die for. Incredibly relaxing and way too much fun for two people. We didn't want to come home. Oh no, we're glad to be home now, don't worry! We love our home! Yes, incredibly happy newlyweds!" Luckily for everyone, that's pretty close to our honest answer. So it's not too weird. :) Maybe a bit of the bickering from the former answer...but mostly just happy. We're human, right?

Does anyone notice how saying "I do" can make people a little more honest? I mean, I hate to admit it. But I think I'm a little more open to saying what's on my mind now that Ben's the "husband" and not the "boyfriend". I don't want to do the dishes? "I cooked, you do the dishes!" I don't want to scoop the litter box? "She's your cat too, you should do it"... I've always been the type to blurt out anything that comes to my mind, but since the wedding I think I've lost even more of my "filter". I need to keep that in check! He's just too good for me to go bickering at him because it's pops into my head. I love that man!

Oh yes, I was going to tell you about the white elephant gift exchange! There were probably 70 people doing this, so it was quite the event. We're sitting outside in the Arizona winter, the fire was going, the space heaters were swarmed. My Dad is of course standing in front of everyone commanding their attention- leading the event. He calls my number and I pick a present (I'm within the first few people), and I got a cute little martini glass with watches and clocks on it that says "It's Five O' Clock Somewhere" which is so true, so I'm elated at my gift. ;) and then the game continues. ...Probably an hour and 15 minutes later, poor Ben's number hasn't been called. I've already gone back inside three times to refill my wine glass. He's just out there waiting, shivering (which is funny because I wasn't all that cold and I had a $10 jacket on...which I got at Ross, love it). FINALLY they call Ben's number, but we had been plotting for quite some time. A gift was unwrapped about 45 minutes ago that was perfect for us...we had to have it. And the best part, my Dad stole it about 15 minutes ago so HE was the proud owner! But there was one more steal left in that gift, so if Ben took it- it was ours for good. He climbed up to stand next to my Dad, introduced himself as the man who married Mike's beautiful daughter, and proceeded to steal the MULLET WIG right off of my Dad's head! It was too good. Especially when Ben explained to the whole group that he already has a mullet wig at home, and he needed to get a matching one for his darling wife! Wonderful. I wore it for the next 5 minutes, then promptly removed it from my head remembering that the mullet wig was in fact someone elses before it was mine...gross. haha! Merry Christmas! :)

How many miles?

2009-12-10T15:41:00.000-08:00

I haven't run in a week. Well, a little over a week really. I sort of tried to run two days ago but gave up after a half mile.

Two weeks ago I ran six miles and felt pretty good. I got to that sort of numb phase where my body just let me run without too much effort. That hasn't happened to me much, let me tell you. The normal amount of effort I have to put in to running three miles is pretty embarrassing. But those six went by kind of quickly. After I warmed down and walked into the house, I noticed something wasn't quite right with my left knee. I walked it off and got into our icey cold pool in the backyard to freeze my legs (it's really crazy, you should see me out there in the cold, standing in a pool with a big sweatshirt on to cover my top half...shivering...but it helps with muscle soreness so much!). I used to do that back when I was a swimmer, it made a really hard workout or a big swim meet just disappear as far as my body was concerned. But it didn't work this time. I got out of the pool and still noticed that ever so frustrating pain of an "overuse" injury.

Now, two weeks later, it's still not quite right. But it's starting to hurt less when I walk down stairs. So I'm going to go run again tonight. I think at this point, two weeks later, I'll feel comfortable pushing through some pain. You can't ever do something that you've never done before without pushing through some amount of pain and discomfort. Your body's not used to it, you can't expect to keep it 100% happy. So the question of the evening is just how many miles. I'm shooting for three, hoping for four, expecting two....sounds like a good plan, no?
...

So there's something else I've been wanting to write down. It's kind of funny how uncomfortable I am writing about it. Not because of me, but because of my wonderful husband. He's a good man, a great man. And I'm so in love with him. And he's been there for me tremendously. And he wants to be "just us" for a while. Therein lies the discomfort.

I'm not going to lie to myself and say that I don't think about it pretty much constantly. And now that the wedding is over, it doesn't help that so many people actually ask about it (really, quite a few more people than I would have thought- I'm only 26...and we've been married for less than 2 months...). If I didn't know that things were going to be difficult, I'd be absolutely on board with waiting for a couple of years. That time of just being us, travelling, lack of responsibility, sleeping in... it sounds kind of nice. I'm enjoying it right now truly. But there it is, sitting in the back parts and tucked away in the corners of my mind, "babies". We've got a jump start with the knowledge. Skipping straight to IVF isn't romantic...but I guess it's efficient. Or at least moreso. But who knows how long it will take- how many tries- or IF it will take. When you hear an RE tell you that you needed to start trying yesterday, it stirs something up in a girl. But to Ben, it just made him think that guy was pushy.

I guess I'd get it if Ben didn't know he wanted kids. Or if he was all about adoption. But he's as excited as I am about trying for our own...he just wants to hold off for a little while. But what is that risking?

He's got a point. We need to have time together, just the two of us. I love us. I'm just scared of the unknown. And I'm a planner, what can I say. Especially with the thoughts of MBA's and career pathing. I'd like to line it all up in a spreadsheet, month by month. "And baby fits in around March..."

Oh if only.

GMAT vs GRE?

2009-12-09T17:03:00.000-08:00

Ha, ok so that's jumping the gun quite a bit. I just had a conversation with my boss about going back to graduate school. That's an incredibly exciting idea for me- I love a challenge, and I'm extremely competitive, so if it's something I think would be difficult for me...I want to try my hand at it. Especially if there's a chance it would really set me apart in my career. And then I stop to think about my life.

What's great about my boss is that I can really talk to her about "me". She knows most of my health problems, she knows my desires and struggles. She's supportive, and she's a pusher. It's a recipe for quite the disaster when a motivated person comes along! I love it. But I'm not just me anymore. I have a husband to think about. A new home. A life. And a future that's so incredibly uncertain in part. All I know is that Ben and I will be in it together, but what will we be doing? One minute I think we've got it all figured out. We're where we want to be. Then the next I want to climb mountains and shoot off fireworks. I'm a nut case really, but in a good way I promise. (I guess that depends on who you ask).

So what is it? Career? Family? The age old question that we so often say doesn't even need to be a question at all. "You can have both!" I mean, I went to Stanford, I was neck deep in the liberal woman atmosphere that beckons it. But I also know that I'm not just any woman in some ways. I'm "special" shall we say... There's a lot behind that statement for sure.

I want both. But at what sacrifice?

A New Beginning

2009-12-08T16:46:00.000-08:00

This is me, returning to my writing.

It's been a long time, and so much has happened in these last months. It's really exciting to think of how impossible it would be to do a re-cap post. I couldn't possibly put it all down into one post. And honestly, words couldn't really capture the beauty of it all.

So in the hopes to at least slightly record those dark ages...

The wedding planning was delirious. There's not a chance in this world I could have pulled it off without my wonderful Mom and Dad, my talented sister-in-law, and my perfect maid of honor. They really wrapped the incredibly beautiful bow around the whole package.

The actual wedding was better than anything I've ever experienced. It was the thing dreams are made of, only none of my dreams ever compared...it was so good! Our ceremony was short but personal, and very emotional. The reception was awesome- the perfect mood and setting. I cried at least three times and danced the night away with my loving husband.

The honeymoon was unreal. One week in Cancun, basking in the sun at an all-inclusive resort. One week at Disneyworld, reminiscing about our Disneyland engagement. So relaxing and so fun at the same time.

We own a home! Our amazing 3 bedroom plus a den, 2 bathroom, single level with a pebble-tec pool just about a mile away from my favorite shopping mall and a freeway that will take you wherever you want to go dream house is superb. We're loving setting up house, furnishing, decorating, the lot!

We saw a Reproductive Endocrinologist who told us that the only way I can have babies is by IVF...mainly because my endometriosis is too aggressive to actually take me off of birth control for long enough to get pregnant. So with that in mind, we've decided to take 6 months to just be married- not really talk about it too much, and then in April we will sit down and have the talk. We'll decide if that's the right time to look into it and get started or if we want to wait longer. It won't be easy, with my brain tumor I have to do a bunch of other tests as well to make sure that it won't get bigger when I do get pregnant, etc... but it will all be worth it in the end. We just need to make sure we're in the right state of mind going into the whole thing.

And work is all a big learning experience. I'm a supervisor now, and everyday is a new lesson. I love that, and I hate that at the same time. I do enjoy actually being "good" at something...but I'll get there.

Finally, I'm training for a Half Marathon!!! Yeah, you heard me. I've lost about 30 pounds and I'm running (up to 6 miles at a time at this point). I have about 40 days until the big race, and I'm excited, scared, and pumped all at the same time.

So that's enough from the past. I'll be back, don't you worry. Everyday there is something to write, something to remember, something to share. I'll meet you here.

I'm Engaged!

2009-05-06T22:33:00.000-07:00

I almost forgot how to log into this, it's been so long. But priorities have changed...and I'm very very thankful :) Ben proposed to me at Disneyland the night before my birthday. It was the single most perfect proposal I have ever heard of, and I cried like a little girl. It was beautiful, and I don't know how I managed to snag such a stellar man.

So now we're in uber wedding-planning mode. We decided we're going to get hitched in October of this year, which means not a whole lotta time to pull it all together. But we're ready for it! I already bought my wedding dress, and I la la love it! It's really a great dress, and I'm super excited to put it on in October and see Ben's face :) Now we're just finalizing the venue and the date. We should have that done by the beginning of next week.

On top of all of that, we're buying a house. Super exciting, and at times very fun, but a lot of stress to add to wedding planning. We put an offer on one house already but it fell through. So it's back to the drawing board. We've got time though, so that's good.

All in all it's been a very exciting month! I'm pretty impressed with how I'm handling the stress of it all. Working out has taken a deep back seat to my new priorities, but that can't last long. I'm lookin' to lose 20 pounds by wedding day...so I've gotta get those tennies strapped on! Speaking of that...

The health side of things has been a roller coaster. But I have to say, it's been a much more enjoyable roller coaster to be on recently. I'm feeling ok most of the time. I can get out of bed without too much trouble, I'm losing weight, I'm actually able to work out here and there. It still cycles though. I've gone through a couple of "bad spurts" when I couldn't move in the morning, I gained all kinds of weight out of nowhere, I got a rash on my legs/arms, I broke out...the list goes on. But those spurts were short compared to the good times recently, so I'm very thankful.

The one piece that just won't go away is the endometriosis...and all of the joys that come with that. Right now my rib pain is under control, but that's not constant. It comes back from time to time and it's gnarley! And then there's the rectal bleeding (sorry, I know)...and the lower right quadrant pain, ouch! We've been investigating these pieces quite a bit more lately, and the Mayo Clinic docs want to actually look into them as individual problems aside from the endo. So today I had the joy of a VCUG and a cystoscopy...I want to hurt the nurses who said those were no big deal. Yeah, no big deal for them. But could you prepare me for the ridiculously painful urination afterward, the bleeding urethra, the impossible bladder spasms?? awkward. I'm also getting a colonoscopy and upper endoscopy in a couple of weeks...NOT looking forward to that. They want to check to see if the endo has imbedded in my bowel, and if I for real have Celiac Disease. Doc thinks I do, but I'm not so sure. Either way, I'm getting the shaft of this deal. What a horrible day that will be...

Cushing's testing has been put on hold for the time being...and that was my call. Dr. Friedman gave me all of the scripts to do everything, but I'm just not able to get to that right now. I can't take time off to do 24 hour urine collections and such. No time. I'm sure I've had a couple of "highs", if that's what we want to call it. But I can't deal with all of that on top of everything. I just want to pretend like I'll be all better forever...and maybe I just will be. But if not, right now I want to live in my fairy tale and enjoy my wedding preparation. Once in a lifetime :)

Dr. Friedman...

2009-03-30T23:00:00.000-07:00

I'm heading to L.A. on Wednesday morning to see Dr. Friedman- the periodic Cushing's specialist. Everyday I change my mind about my own diagnosis. Depending on the moment, I'm sure that I have Cushing's, or that my endometriosis is the cause of all of this, or that I in fact have Celiac Disease causing the drama, or that I'm actually fine and just need to get used to my new "body". Each moment changes the outlook. I just got back from the gym- a 90 minute intense workout with Ben where we both kicked eachother's asses, and it's hard to believe that I've been so sick. But then I stop and realize how sad it is that I can't lift my own body weight, or how that stabbing pain after my workout under my rib cage radiating up to my right shoulder probably isn't all that normal. And then I think about how I felt three weeks ago, and how this always happens. This period right now, the this-is-not-so-bad-I-can-deal-with-this period, is what makes me stop seeing doctors again and go back to just dealing with what I've got going on. And then, sure enough, a few months later I'm back in the doc's office worse than ever....trying to figure out what's wrong with me. This is the first time that I've actually realized that it might all be related- that it might be one big long problem that just cycles in and out. I'm in a good phase, and I want to forget about the bad phases...but maybe I shouldn't just yet.

I went to see a GI doctor today for the first time, ever. With all of my endometriosis problems, all of the GI symptoms, all of the pain- I've never seen anyone about that piece in particular. Dr. Harris at the Mayo Clinic was really great. She sat with me for an hour going over my whole history, detail by detail. She was very thorough, and it really helped me put everything together. Basically, she thinks that a lot of what I've got going on is caused by the endometriosis. She thinks I have endometriosis implants in my bowel, but she wants to do a colonscopy to make sure there's nothing else that could be a problem. She also is really concerned about celiac disease, which I was surprised about. Because I've been fairly gluten-free for months now, she can't test for it. And she feels that my previous test, after having been gluten-free for over a month, was probably incorrect. I already know that I feel better (not 100%, but better) when I avoid gluten, so I just want to stick with that. But she said if I do actually have celiac disease, it can be really bad to not diagnose it and just keep eating a little gluten here and there because of the damage it can eventually cause. She is having me start eating gluten again- the equivalent of 4 slices of bread EVERY day for 6 weeks, and then I'll have some blood work done to determine if I have the first markings of celiac disease. If the blood work comes back positive, they'll move on to the upper GI scope/biopsy, and they'll do that while they go in for the colonoscopy. Sounds like a good day, eh?

But right now I'm focusing on my trip to L.A. to see Dr. Friedman. I know it says to take pictures to show body changes, etc. But I don't have a whole lot of change other than the 25ish pounds I've gained in the last 4 months out of nowhere. I guess I could take pics from 6 months ago to compare to now, but my symptoms and everything started long before 6 months ago. The weight however wasn't much of a problem back then. That's a recent change. I got all of my medical records from the Mayo Clinic today, so I'll be taking those. And then I'm taking my MRI scan, but they'll have to do repeats in L.A. because my previous MRI was done on a 1.5 Tesla machine, which isn't as strong as they'd like. But if my tumor showed up clear as day on a 1.5, what will it look like on a 3T? And why would they need something stronger if they already can see it? Oh well, I guess a better image can't hurt.

Anyone out there who's seen Dr. F have any tips or anything for my trip? I'm a little nervous about what he's gonna say or how I'm going to explain everything to him. I have no idea what's connected, what could be Cushing's, what to tell him, etc. I have my folder of all of my medical records, and I'm writing down all of my symptoms- but I don't have any grasp on my "cycles" because I haven't done much testing at all yet. I just know of some symptoms that correspond to each other, but not whether they correspond to high cortisol or low cortisol.

Help me out if you can! I appreciate it! :)

surgery?

2009-03-17T17:51:00.000-07:00

I went to see the Mayo Clinic GYN yesterday and had a very interesing appointment. Dr. Kho was really nice and very concerned, which is refreshing. She had already talked to the internal medicine doctor about my issues and that was also really great to hear. We went over some of my history and she did an exam, which is always lovely with endometriosis. Then the interesting part: I explained my concerns with the right upper quadrant pain and the shoulder referral pain- and my confusion about what it was linked to. She pretty immediately expressed her opinion that it's endometriosis, and then very quickly went into the idea of having another surgery to check out my diaphragm and remove the endo. The last GYN I saw told me that doing any endo removal up around the diaphragm is way too risky, but Dr. Kho talked for quite a while about her confidence in the Mayo Clinic robotic surgery division, and the oncologist they would have perform this surgery. Apparently he can do everything- some sort of super doctor. He would be the surgeon because of the possibilities of bowel resection, diaphragm involvement, and emergency repairs that could come with all of that. She really seemed to think that having another surgery was a good idea, but left it with me being in charge of deciding "when it's too much to bear" and when we should go in and try again. I'm definitely a little concerned about having another surgery after the last one did nothing but cause more problems...

Another fun fact I learned at this visit is that I have kidney stones, and apparently the internal med doctor missed that when she went over my lab results. What? How do you miss that? I had explained the radiating pain, and they tested for calcium in my urine...and it came back positive apparently. So Dr. Kho said she'd follow up with the internist to make sure I get a call about that and an appointment with a urologist. Fun fun. Why do I have kidney stones? What's WRONG with me?!?!?!

Exciting news: I went to the gym last night! That's right, Ben took me to the gym and acted as my trainer for the day. It was great. He was a really good motivator and also was gentle, so I'm not too down on myself. It was absolutely embarrassing though- I couldn't do assisted pull-ups. Assisted!!! I had a lot of trouble with squats too. I'm just sad about the whole thing. I'm so shaky and weak. But I'm going back tomorrow! :)

Rotating

2009-03-15T22:45:00.000-07:00

I'm starting my new position at work tomorrow. It's funny, I have no expectations of it at this point. I'm not too worried about it either, I think it'll be managable which is good. The only thing I'm worried about right now as far as work goes is having to present out my project again next week (Thursday) with some additional pieces that I haven't completed yet. Oh, and the fact that I'm going to be gone a whole lot over the next couple of months. That stresses me out, unfortunately. But also really excited for some of the great things I've got coming up that will be pulling me away from the ol' office. First, we're going to Napa this weekend for a family vacation, Ben in tow! Very excited, should be perfection in my book. We're staying at a vineyard/bed and breakfast! Then I'm going out to L.A. to see the Cushing's specialist April 1st! As much as that's gonna suck, I'll be glad to hear what he has to say. Then it's off to Disneyland for my 26th birthday with my amazing boyfriend in the middle of April. And then in the middle of May we'll head back up to Napa for a wedding at a vineyard :) Good times all around!

Now for the bummer messages. I have an appointment with the GYN at Mayo Clinic tomorrow morning. I'm NOT looking forward to this in the slightest. I can guarantee it will be a frustrating appointment, because I'm not pleased with how I've been feeling, and I have no idea what's causing it. A substantial amount of this discomfort could very easily be blamed on endometriosis. But what could we possibly do about it? I had surgery to try and remove some of the pain, and it made things worse! I went on Lupron to try and remove some of it, and I was a crazy person (and it didn't work as well as I would have liked). I went gluten-free for this damn disease, and nothing. Now I'm on birth control for it and I'm still not feeling lovely. It seems to me that options have been exhausted. At this point, it's a learn to deal or go insane situation. razzle.dazzle.

Second bit of bummer news. I haven't heard from the internal medicine doctor about setting up any follow-up appointments, lab work, or forward movement whatsoever. I did get a voice message from their little voice system telling me that the urine analysis came back perfectly normal. Shocker. So that pain I've been having with urination- eh, no biggie. The tests are normal, I should be good to go. So, square one- it's good to see you again.

And now a little neutral style news: I met with the endocrinologist, Dr. Lalani, who originally diagnosed me with Cushing's and said I needed the tumor to be removed. I asked him why he diagnosed me and what it means that the neurosurgeon I saw said he didn't feel comfortable with THAT particular diagnosis and needed a different doctor to diagnose me (who, if you haven't been following, did not in fact diagnose me...but rather told me there's nothing "endocrine related" wrong with me and that I need to see and internal medicine doctor...who told me I need to see a GYN and a GI doctor...anyone picking up the pattern here?). Dr. Lalani did some interesting word play and underhanded back pedaling, but somehow made me feel a little bit better about my present stagnant situation. He said that because he's such a proactive doctor, he saw some possibilities of Cushing's and decided we should stick with that because Cushing's goes undiagnosed so often. I was impressed. He then said that I've disproved Cushing's a couple of times now, but have also proved it. So we need to continue to test to figure out which hypothesis to stick with. He put it that it's not cyclical Cushing's that I might have, but rather it's Cushing's with cyclical production at this time. He said all Cushing's starts out like this, with cyclical nature. We found mine early, possibly. We will continue to test until it inevitably progresses toward florid (or constant producing) Cushing's. He said that's how it works. And so Dr. Lalani wants to re-test with a 24 hour urine once every 6 months. Doesn't seem very cyclical testing to me. And that's a looooong time to go between tests if my symptoms aren't getting any better. And he said he's also looking for growth of the tumor, so we'll do another MRI every 6 months as well. But I've heard these tumors don't necessarily have to be growing to be totally evil. I like this doctor a lot, but I'm skeptical. Once every 6 months? That's rough. If it's really like he says it is, with progress sure to come, then I guess that's fine. But if it's cyclical and will be this way for a while...I still want it to go away!!! Why not just take the tumor out! I guess the answer to that is that they don't want to go in for brain surgery if I don't need it. Valid concern, I agree. But tough to take at the same time.

So I'm glad to be going to see Dr.Friedman. Expensive though, I'll tell you what! I have to get another MRI or two while I'm out there because my previous one was on a lower resolution machine than he needs it. And it's all out of network. And I have to pay cash for the actual visit with the doc. Ouch. If any cushie's are out there reading this (who used Dr.F, what's that visit like? Should Ben come along and use some of our valuable PTO days? Or will it be fine if I go alone? Is there any time for anything else other than the testing?

I'm back!!!

2009-03-08T21:36:00.000-07:00

Wow, I'm a bad blogger. I've been crazy busy lately with work- I presented out my final product for a project I worked on for three months just Friday. It's so good to be done with that (ok, I still have to present it one more time and do a little extra work with it, but I'm pretty much done now). And I went to NYC for a whirlwind trip last weekend. That was phenomenal! Got to see my girls from Stanford and reminisce...loved it. But that's no excuse for the ridiculously long hiatus from blog world. I'm back now, and you get to hear all about it!

I had my follow-up appointment with the endocrinologist a couple of weeks ago- it was not so good, let me tell you. I sat down in his office, knowing that my test results were normal (other than a trace of hemoglobin in my urine, as well as high creatinine and low osmolality) and expecting him to say I'm perfectly fine. I was not pleasantly surprised. He said that it looks like everything is normal, I don't have Cushing's, that "little something" I have in my brain is no big deal, a lot of people have those, and that he thinks the Lupron is what's causing all of my symptoms. I quickly reminded him that I've had these symptoms for two years and that some of them just got worse while on Lupron! He seemed really confused, looked back through his notes, told me that he had written that most of my symptoms STARTED three months ago...and I nearly got up and left. Luckily, Ben and my mom were in the room with me both at my initial visit with him and this time- and they confirmed that I had stated my symptoms have been around for years, thus the countless trips to doctors, the diagnosis of Hashimoto's disease, the question of thyroid cancer, the treatment of endometriosis, and the returning to doctors FIVE months ago (before the Lupron) to figure out why the symptoms were still there after another laparoscopy and now getting worse. That's when he told me I should see an internal medicine doctor because "there definitely seems to be something wrong, but nothing endocrine related". I mean, good Lord. I proceeded to ask him yet again about cyclical Cushing's and he said that the tests he did showed it doesn't look like Cushing's, but nothing could really rule out cyclical Cushing's. He then told me we could test again randomly later. I told him I wanted to have an open order for tests so I could do them when I was feeling "high". He said I could call him for a persciption and he would set that up whenever I needed it. I asked him when he thought I should test, according to my cycling symptoms. He said "when you feel really bad, that's when you should test". Everything I've read says usually when you feel BEST is when your cortisol is high, and when you feel really groggy and weak, that's when your cortisol is dipping. I told him this, but he disagreed. I also asked about doing midnight tests, and he said that "we stopped doing late night testing a long long time ago. Blood tests aren't accurate due to the stress a needle can cause, and how that can increase cortisol". Wow. I'm just blown away by the discrepancies I'm hearing...who do I believe??? So, drumroll, I set up an appointment with Dr. Friedman in Southern California, a specialist in cyclical Cushing's. I want to see someone who has seen OTHER patients who have symptoms that cycle back and forth- especially people who have these symptoms PLUS high cortisol, PLUS a pituitary tumor. If this guy tells me I don't have Cyclical Cushing's, I'll move on. At least he knows other cases and what cyclical actually looks like.

So anyway, I went to the internal medicine doctor that that endocrinologist recommended, and so far it's the only good thing that's come out of the Mayo Clinic for me. She was awesome. She sat in the office with me for over an hour, wrote down everything I said, had several hypotheses, actually had plans for how to test these hypotheses, and hang on...wait a minute...she BELIEVED ME! She actually believed that there's something wrong with this picture, that this all looks really weird, really wrong, and that something needs to be done about it. She did a neurological exam and said my muscles are way too weak- you THINK? I know when my muscles aren't right, I was a professional athlete. It was so nice to have a doctor believe me, and then see proof that there's something wrong. Now let's hope she follows through. That's the real test.

She took more urine, and she'll do a urine culture because the pain is still there in the mornings when I go to the bathroom. The endocrinologist at Mayo said a little hemoglobin in my urine is no big deal, and I had to ASK him about the creatinine and the hemoglobin and any problems he might see with that. He hadn't even looked at it. After looking, he said "yeah, you do have high creatinine. See the internist". Argh! Oh yeah, by the way- about a month ago when I saw my gynecologist, she took a urine sample for a culture because I mentioned my little morning problem. I called about two weeks ago for the results, and they lost the sample. They said the doc hadn't written anything about wanting a culture, so they probably threw it away. Done. I'm done. I don't even know what to say anymore. I keep wanting to give up and just pretend like I'm fine. I want to pretend like I never found out about that tumor...and that it actually ISN'T a big deal. But then I think about the possibility of figuring this all out, and maybe even curing it. I'll keep pushing for now. But I'm not happy about how the medical industry is dealing with any of this.

I should probably stop typing now before I get all worked up. I'll write more about my post-Lupron journey, my start on BCP, my upcoming appt. with Dr. Friedman, and some of the very interesting hypotheses the internist came up with. I'm sorry again for the long delay...but I'm back!

Vegas, Baby!

2009-02-17T22:13:00.000-08:00

Ben and I got home from Vegas last night after a totally amazing Valentine's Day weekend! We stayed at the Encore, a new 5-Star resort right next to the Wynn on the strip. Loved it! Add that to the list of things that make me smile: a wonderful weekend away with my baby :) We went to La Reve, ate at several totally delicious restaurants, had the most gorgeous suite, walked up and down the strip countless times, and gambled gambled gambled! We ended up pretty much even on the weekend as far as gambling goes, too, so that's pretty good. We won big on Black Jack, but lost quite a bit on slots :)

Update on the Cushing's Question: I got my appointment with the Mayo Clinic endocrinologist moved up to next Tuesday which is nice. I was going to hate waiting til March. So I'll get my test results and know the next steps in a week. I'm guessing these results are going to come back normal, but I'm going to push for more Cushing's testing, as well as for another direction (what else could be causing these lousy symptoms?) Hopefully he'll have some insight. I will also probably look more seriously into going to see Dr. Freidman in California. I am starting to gather a list of symptoms that cycle, in case they do in fact link to Cushing's disease. If the tests come back abnormal, and the doctor in fact thinks we need to move on with the Cushing's diagnosing, I'm going to have to think hard about a surgeon. The one I met at Mayo wasn't very comforting. And I just heard a really bad story about a really highly recommended neurosurgeon in AZ, and I don't feel comfortable with that one now either. I guess we'll just wait and see.

I also am supposed to have an appt. with a GYN at Mayo tomorrow, but they've rescheduled on me twice now. I have had the WORST luck with gynecologists in AZ. I won't be seeing her now until March 16th. I've been on birth control now for over a week and it's going pretty well. I'm noticing some changes from the Lupron already. I'm not as irritable (still get mood swings, but not nearly as bad). I'm also just happier. I had forgotten that I was quite a bit happier back before Lupron. I'm hoping that I'll lose some weight now that I'm off of it, but haven't so far. I've gained 5 pounds in the last week...but I did go to Vegas this weekend. So maybe I'll start to lose this week??? :) haha.

smile.

2009-02-10T17:58:00.000-08:00

I was tagged by Judy to share 6 things that make me smile. I la la love this!

1. My absolutely wonderful boyfriend, the love of my life, Ben!

2. My family and their loud, ridiculous antics. Especially game nights! :)

3. My neice and nephew...they make it hurt so much more that I may not be able to have kids myself, because they're so terrific! Always smiling, and always entertaining.

4. Rainy days, and all that entails.

5. Romance! Absolutely, totally, and completely a hopeless romantic. Love it!

6. Accomplishing a goal- be it checking off a task on my to-do list, finishing a tough project at work, or just organizing my room!

I tag: Amanda, My Journey with Endometriosis, Should Have Seen It, Nicole, Cushie Mama, and Foxy. Enjoy!

RULES:Link to the person who has tagged you.Write down six things that make you happy.Post the rules, tag six others and let them know you did it.Then tell the person when your entry is complete.

::Sigh::

2009-02-09T18:42:00.000-08:00

It's a two-post day. I got to work about two hours late because of testing this morning, so I had to stay pretty late and man was I tiiiiired! I got home and Ben quickly cheered me up by discussing our Valentine's day plans :) And then he was off to the gym. So I sat down to get on the internet and came to my blog. I read my comments on the last post and realized that some people are just so, so good. Everytime I post yet another disgruntled, frustrated analysis of my present situation, I get comments from some great people wishing me well, giving me invaluable information, and just saying hi. It's amazing how much better those comments can make me feel. Maybe it's because I'm slightly unstable quite a bit of the time, but it's really wonderful! So when I was feeling pretty good about the fact that there are just some really nice people out there, I decided THIS would be a perfect time to post something not so horrid.

It's raining outside! I la la loooove the rain. Ben and I used to go out whenever it rained and run around, try to play Frisbee, and inevitably have a totally romantic and really disgustingly cute rain kiss :) It's been pretty dry around here lately, so I'm loving that it's coming down so hard outside. We haven't had a chance to go frolic yet, but it still makes me think of those adorable moments.

Now, I've been wanting to post a little update on the ol' Lupron situation, but I've been so distracted! I started this whole blog to document my journey through the unending saga of endometriosis and all that entails. Sadly, a lot of women with endometriosis tend to have other diseases that accompany it, so I guess this is still good to document. But the Lupron piece of the puzzle was really important to me to get out. When I was deciding whether to take on the unpredictable life of the chemically menopausal, I went searching for info on the internet. For those of you who haven't read up on Lupron, it's a nasty topic. There's a lot of really bad stories out there of women who did one injection and were never the same, or who got wicked migraines or dizziness that was totally life altering. I was Terrified! But after a little more extensive research, I found a couple of blogs detailing the daily life of some women on Lupron. They went over the good, the bad, and the ugly. And in the end I decided it would be worth it to try, even if just for a month. I wanted to give back what those blogs gave to me. So I started chronicling my Lupron days. What a ride!

First, Lupron wasn't nearly as bad for me as I know it has been for a lot of other women. It's different for everyone, that's for sure. I had some of the symptoms that I was warned of during my research (but I'll just kind of warn that some of these could be related to the other undefined "disease" that I'm testing for right now):
1) Sleep disturbances- I could NOT fall asleep at a reasonable hour, no matter how early I needed to wake up. And then I would wake up nearly every morning around 4am, and struggle to get back to sleep.
2) Acne- I mean, I never really had skin problems growing up, so this was hard to take! It wasn't totally out of control, but it was a lot more than I'm used to. :( Argh!
3) Slight joint pain- the fact that I wasn't working out much at all during these three months leads me to believe that the joint pain had something to do with the Lupron. It really wasn't bad at all.
4) Hot flashes- these were funny to me, and really didn't bother me. But I was on add-back progesterone therapy, so that helped quite a bit I'm sure.
5) Hunger Increase- Again, don't know if it was the Lupron, but I would get really really hungry sometimes...like there wasn't enough food in the WORLD!
6) Mood Swings- Ok, this is the kicker. The mood swings were unreal!!! I seriously couldn't control myself sometimes, and it made me even more upset. I would go from really happy, to really angry/irritated/annoyed, to ridiculously depressed, then back to happy- all in about 30 minutes. And not the garden variety type of mood swings. No, this was evil. Period.

The main reason for me going on the Lupron was to help with the pain I was having up under my rib cage around my diaphragm. That pain is still present most of the time. It's not quite as bad, so I'm not really sure if the Lupron helped or what. But I still get some of the sharp pain in my lower abdomen as well...I don't think that's supposed to be there after three months on Lupron. But I'm at work now, I can get up and move around...and even exercise at times! So it's a personal choice, but I think the Lupron was worth it.

So I'm pretty lucky in the end that Lupron wasn't too bad for me. I know some great women who's bodies just didn't respond well to it. I wish they didn't have that experience. I'll probably go back on it at some point, and I hope that my experience the second time around is good again. I'm stopping for a couple of reasons- the main one being the testing and re-testing of the Cushing's is really too much for me to take with the mood swings and such. But also, I'm just not sure it's helping enough to keep my body under the stress of it. I already have 10% bone loss, and Lupron doesn't help with that at all. So I'm gonna go back on BCP for a while and see if I can manage.

Alright, this post turned into quite a lengthy one on accident. It's pouring outside, so I'm gonna go listen to that beautiful sound and day dream about a great rainy kiss! :)

Still peeing in a jug...

2009-02-09T06:06:00.000-08:00

Not literally in the jug- I have to pee in a bucket, and then pour it into the jug. Even better! I started this one yesterday morning, and I'm about to finish it. Then I'll be taking the jug to the Mayo Clinic to drop it off, and then get some blood work done. I've been fasting since 8pm, and I'm hungry :(

I said I'd write about some of the "feelings" I'm having with all of this. That's harder than I thought it would be. I'm pissed off really, but I don't know why, or at what. I feel like doctors can't be trusted now, and I want to be able to trust a doctor. My health is in their hands. I have no control over my own health care, and that drives me absolutely nuts. And what's funny about it, is that I've been dealing with this kind of thing for years. This isn't the first time by any means that a doctor has given me bad information, a wrong diagnosis, or completely overlooked what was going on with me. I've believed them before- I've stopped seeing doctors and tried to "suck it up" and be stronger, merely because enough doctors had told me I'm normal, or "everything looks perfectly fine". But this time, I feel crushed. Probably because I was so extremely happy that a doctor had finally listened to me, did some tests, actually FOUND something wrong with me (abnormal test results PLUS a tumor in my brain) and had a plan for what to do for me. He seemed like he even cared that I get better, or was concerned that I'd been shuffled from doctor to doctor never finding anything that would cause my symptoms. He back-pedaled for my previous doctor once; he told me that the Cushing's symptoms are very similar to Hashimoto's symptoms and this is why it was so difficult to find with me, or overlooked completely. They thought they had found the "culprit"...BUT when we found the Hashimoto's, I was told it was sub-clinical still and we could do nothing about it. (It's still that way, and this most recent endocrinologist confirmed that my thyroid gland "feels" Hashimoto-ish, and that it's slightly enlarged, and that the antibodies absolutely point to Hashimoto's...but my gland is still functioning properly. Apparently, I have Hashimoto's but my thyroid is a stubborn old girl, and she's still producing those hormones like a champion. However, with this disease, it's only a matter of time before my body kills that little thyroid and I'll be on medication for the rest of my life). So now, I'm back to square one...and I thought I had an answer, or a doctor who would at least help me. Now, I'm left feeling like that doctor was a complete moron- like I shouldn't believe a word he said because his testing protocol was worthless...and the labwork he felt was abnormal, wasn't abnormal "enough". Who do I believe? Little voices in my head tell me to believe the Mayo Clinic doctors because 1) there's a team of them and they both ganged up on the old doc...or they both just feel that he was incompetent or somehow misguided and 2) everyone builds up the Mayo Clinic like it's full of these doctor geniuses and every single person there should be listened to with sheer amazement at their wonder. "Take notes you little patients, these doctors will change your life"...these little voices are slightly alarming, but realistic if you ask most people.

Then there's Dr. Friedman in California. He's a specialist in "Cyclical Cushing's" and he apparently has a very holistic approach to that disease, or to finding whatever ailment is lurking. I like that, and I especially like that he focuses on a disease that is so incredibly rare, that most doctors actually come right out and say that they won't even be discussing it, or thinking about it, or testing for it. They teach doctors in medical school, before they've actually become the "gods" that a lot of people make them out to be, that they should think horses, not zebras (aka, it is far more likely that the patient has plain old variety Cushing's, so make sure all other avenues are exhausted before testing for an extremely rare disease). I get that, but I also feel that a lot of extremely rare diseases could go extremely undiagnosed in that setting. For instance, say someone has an extremely rare form of....oh, let's say "Cushing's Disease"...and they also have this fairly common disease by the name of Hashimoto's. Well, the symptoms are similar in both, but the shining, beautiful horse in the picture is the Hashimoto's. So, wonderful patient, you're Cured! You have Hashimoto's! (The reason as to why we can't treat it- and why it technically shouldn't cause these symptoms- is unimportant, because we found a horse to diagnose you with. No run along garden variety horse, you're all set). Anyway, Dr. Friedman seems like a good person to go to who would look outside of this horse box, and maybe find me an answer. But he comes with quite a few dilemmas: 1) California, I've done surgery in CA and flown back out to AZ more than once in my lifetime, and it sucks. I actually told myself I wouldn't do it again. But I can work around that hurdle. 2) He doesn't accept insurance. I know, sounds sketchy. But he has a huge following apparently, so he doesn't "need" to accept insurance. So it'd be wicked expensive...haven't decided if I can muster the strength to get over that hurdle. And 3) he doesn't do testing on anyone who's been on birth control in the last three months or so. I would need to go back on Lupron, against three other doctors orders, to go and get tested by him (and pay a lofty sum, and fly to California...). Three rather large dilemmas. I'm still thinking about it.

Now, I really don't want to have Cushing's disease. I don't want to have a brain tumor either...especially not after the one and only neurosurgeon I've seen, who hails from the all mighty Mayo Clinic, told me that basically a monkey could do as good of a job as him because that's the nature of this surgery. A lot of digging around, some scooping of "tumor tissue", and sending it off to the lab to see if he guessed right as to where this little tumor is chilling out. I don't want any of that. I was a horse, that's easy to treat and ready to graze. But I've gotten the horse diagnosis before, and it did sh*t for me then. So why wait for another one? Maybe I'm a zebra. Maybe I'm one of the unlucky ones. But as far as I'm concerned...any answer would be a lucky one at this point.

Quick Irritated Update

2009-02-06T23:07:00.000-08:00

Just gonna throw this out there because it's late and we have to head out. But update on the appointments:

Neurosurgeon doesn't trust my endocrinologist and his diagnosis/tests. He says he wants me to see a Mayo endocrinologist and see what he has to say. IF he wants me to get surgery, then the neurosurgeon will do it. But neurosurgeon is concerned that my tumor will be difficult to find...and the surgery will destroy my pituitary and cause panhypopituitarism...aka, no pit gland= drugs for the rest of my life and increased risk of death due to an adrenal crisis. But skilled surgeons perform this surgery all the time and feel confident in themselves- so I feel slightly concerned...

Endocrinologist doesn't trust my old endo's labwork or testing protocol. Thinks I MAY have Cushing's but wants more diagnostic testing. Doesn't want to perform any "screening tests" though because I already have too many things pointing toward Cushing's. His "screening tests" are tests that other doctors consider diagnostic however... He also has one "gold standard" test that I'm performing this weekend/next week and that will tell him with very good certainty whether or not I have Cushing's...but this doctor does not believe Cyclical Cushing's is even an issue, or anything to consider because it is too "rare". My symptoms definitely cycle however, and I'm in a phase where I would be considered "Low" and my cortisol may not be at it's "bad levels". I'm exhausted all the time, can't get enough sleep, not nearly as wired at night as usual, not able to work out (no motivation to get up and move), very weak, and losing weight without trying. This is usually considered a "low cycle" in cyclical cushing's...if that's what I have. My old endocrinologist thought that was a possibility for me. So basically, I won't feel comfortable saying I don't have the disease based solely on a test I do this next week. Plus, I can't get in to see this doctor again for a follow up on the test results until MARCH 23rd!!!! That sucks, and is totally bull. They should be able to fit a follow up in at the Mayo Clinic quicker than that. Argh.

Ok, gotta go. Will update with more of my feelings on the matter soon. Plus, new development is that I'm probably going off of Lupron for a while and onto birth control to allow for a little more "mental clarity" if you know what I mean. In other words: I'm totally evil right now, and need to not be, for everyone's sake including my own.

Just breathe.

The rambling mind of the sleep deprived

2009-02-04T06:55:00.000-08:00

I've been awake since 6ish this morning...actually a little later than my usual first wake-up time. But this time I seriously could NOT get back to sleep. I'm gonna blame it on my neurosurgeon appointment today. Maybe I'm just nervous. I went to sleep around midnight, and didn't need to wake up til 8:30! :( My recent norm has been to wake up at 4 or 5 am and struggle to fall back asleep, but at least get some form of shut eye for the remainder of the morning. And then the always inevitable struggle to actually remove myself from bed when it's time. At 4 or 5 I could wake up and run a half marathon if I wanted to (i say half marathon as opposed to marathon because being realistic is important to me...). But once I finally fall back into my semi-slumber, I cannot pry myself out of bed. Sad. This morning however, I gave in and actually just decided sleep wasn't in the cards for me. So I got on the computer and started reading blogs, doing a little more Cushing's research on www.cushings-help.com. For those of you who don't know much about Cushing's, check it out. It's a wonderfully helpful website, and the message boards are incredible. These people are so supportive and always want to help. I haven't done much message board action in my day, a little here and there with the endometriosis. But this board is by far the most supportive I've been to. Maybe it's because Cushing's is so rare, and nearly every single person on the board has been through the "test more, we're not sure if you actually have it" game.

When I stop and think about my past health experiences, sometimes I chuckle a little. Awkward, I know. But looking back can be a lot less horrifying than actually living in the moment. At the time of all of my undiagnosed, misdiagnosed, and sometimes finally diagnosed experiences I wanted to strangle someone. But looking back, how could one person jump on the same merry-go-round so many times? First with my very difficult heart condition as a child, and then the asthma that complicated it. Then the "pneumonia" that put me in the hospital for a week at the age of 12. Then the mono that went misdiagnosed for three months before I finally got a positive test back. Then a back injury that was diagnosed as four different things before settling on a final diagnosis and eventual surgery (after 11 cortisone injections). Then endometriosis...oh endometriosis! Ovarian cyst after ovarian cyst that nearly had my appendix removed three times in the emergency room. Finally a laparoscopy confirming stage 4 endo. Then the unexplained muscle weakness...blamed it on the back, blamed it on the endo, blamed it on my lazy ass just not wanting to be able to swim fast anymore...???? Finally a diagnosis of Hashimoto's disease. Ah but wait, Subclinical Hashimoto's disease that can't be treated! How convenient! So what's the reason for the fatigue, the muscle weakness, the horrific immune system? Maybe it's the two thyroid nodules they found. Biopsy- benign. Well I guess that means I'm fine. A year later, I can't deal with this anymore. One more laparoscopy, some severe (and of course unexplainable and undiagnosable) pain in my upper right quadrant, a UTI that won't respond to antibiotics, a kidney infection with "possible" kidney stones, and fatigue that kept me out of WORK at this point...time to start testing again. ...High Cortisol. Ok, hmmm. Bone scan shows loss of bone. Hmmm. MRI shows pituitary tumor. Ok...Cushing's disease! Supressed cortisol with the dexamethazone test: ok, maybe not.

It's a fun little carnival ride, if you're sick and twisted like that. But looking back, it's kind of funny. I was a competitive swimmer for the entire thing. I was pushing my body to do things that not many others could do. I was succeeding, most of the time. I maintained a positive outlook because if I could still swim, if I could still live and laugh and play- then what does all of it matter? A little set back here and there just made me stronger- that was my reality. Until swimming was no longer an option. And then working became unrealistic. And then the laughing and playing part started to go... So right now, living in the moment of another misdiagnosed, or undiagnosed, or possibly diagnosed saga- I'm miserable. But when I look back at how it has all gone down, it makes me kinda...chuckle. My biggest question: a year from now, will I still be able to laugh? I sure hope so.

Sleeeeeep

2009-02-02T17:58:00.000-08:00

I actually slept through the whole night last night, first time in a while. But I only got about 6.5 hours, so that probably helped. I had to wake up wicked early for my work mania week to begin. I mean, this week is gonna be one for the books for sure. Three visits to Mayo Clinic on top of the "beginning of the end" at the ol' office, as I like to put it. I just really need some good sleep over the next few days, that'd be super. I'm not banking on it though, seeing as the last month or so has been one restless night after the other. Not being able to fall asleep, and then finally getting to sleep to be awoken by a call from the bathroom, and then not being able to fall asleep again, and then spending the next three hours "hardly sleeping" I think is the right term for it. You know that up and down feeling, when you fall asleep and then wake up and wonder if you were ever actually sleeping? Yeah, that's me.

So I spent another few hours on the phone with doctors offices today. I went and picked up all of my medical records from my GYN to have for the Mayo Clinic, since that's where most of my medical drama has occured in the last few years with the endometriosis and all. I also now have my MRI films...but I can't figure out where the pituitary actually is, let alone where that little microadenoma is chilling out. I'm gonna make the neurosurgeon point it out to me, cuz I think that stuff is cool. I always wanted my GYN to give me a video of my laparoscopies. I doubt I'd sit around and watch it on the weekends or anything, but I'd love to see it. Plus, my mom's kinda crazy like that too. She's a middle school teacher though, enough said. :)

It's time to go play a little Dance Dance Revolution! For those of you unfamiliar with said game, get your hands on it and play it! It'll change your life. :) Seriously, ridiculously fun and actually quite the workout. I just need to get a video camera on Ben and I as we play it, that's gotta be horrific.

My First Award! :)

2009-02-01T19:43:00.000-08:00

I've been blogging for a few months now, and it has really helped me to get my thoughts out in writing. I know that it will be invaluable to have this all written down in the future when I either a) need to have a journal of my medical symptoms and reactions and/or b) decide to write a wildly popular book chronicalling my ironic existence...

But I also always hope that this blog helps other people as well. I hope it touches people who are going through things similar to what I'm dealing with. One of my first blog friends, who I met through our nearly identical start times of the "menopause death", gave me my first blog award this weekend! Thank you Amanda! I love watching Amanda's progression through what she's dealing with; starting with a private, silent experience to now an open and and somewhat vulnerable existense in the blogsphere.

So here's the award:

"The authors say that blogs who receive this award are exceedingly charming. This blog invests in proximity in space, time and relationships. These kind bloggers aim to find and be new friends. They are not interested in prizes or self-aggrandisement. Our hope is that when ribbons of these awards are cut, even more friendships will be propagated. Please give your kind attention to these writers."

Here are a few of the blogs that I follow, and have leaned upon, in these last few months. I pass this award along to you:

My Journey With Endometriosis

Cushing's Family

Cushie Mama

Another Day In The Life of A Train Wreck

Endo Chick

Jeanne's Endo Blog

I've had a busy weekend, trying to get ready for a very very busy week! I have some huge things going on at work this week, and also three appointments at Mayo Clinic. Hopefully I'll be getting some answers or a timeline of some sort...but honestly, I think I'll just be set up for some more testing. Wish me luck on being able to move forward rather than just keep testing...

It WAS a good day!

2009-01-28T18:49:00.000-08:00

I got the call from the Mayo Clinic yesterday to set up an appointment with the neurosurgeon. They have my MRI report and apparently think I should be operated on, but they don't have any of my test results or the MRI film...so I'm not buying it just yet. The hospital called back today to set up a vision field test for the day before my appointment so the neurosurgeon can have those results by my visit. And then they set up an appointment for me to see an endocrinologist at Mayo the day after my neurosurgeon visit. I also set up an appt. with a GYN at Mayo so I can have a whole team of docs there looking at the big picture. This is all going down next week, so it'll be a big week for sure. My vision field test is on Tuesday, then neurosurgeon Dr.P on Wednesday, then endo on Thursday. My GYN visit is the following Tuesday with Dr. K.

Today I went to my current GYN to talk about the Lupron and my little morning problem. She's concerned about the pain in the morning and did a urine culture that we'll find out about in a week or so. She's wondering if it's a recurrence of my kidney infection from 5 months ago, but doesn't a recurrence involve some sort of ceasing and then return of the pain? This never went away... She also thinks I should stop the Lupron because "I've got too much going on". Apparently the Lupron wouldn't have any affect on the test results, but birth control would. So she's saying that I need to stop the Lupron AND not go back on birth control...that is absolutely terrifying. The last time I went off birth control for only three months (and mind you, it was right after a laparoscopy to remove the endometriosis) I ended up on a medical leave because the pain was so bad and I had such a huge cyst on my right ovary that ruptured and wreaked havoc on my pelvic area. That was the reason we started the Lupron in the first place. I've just started feeling like the endo isn't so horrible, and now I'm going to stop all at once? Can't be good. We'll see what happens after she calls my endocrinologist to discuss everything that's going on. I'm glad that she said she'd call him, I like the idea of my doctors working together. I have trouble believing all of this is totally unrelated!

One thing that the GYN said today that sort of threw me off was regarding my reproductive health. Since I was 19 years old and found out I had endometriosis, and then stage 4 endometriosis, I've had doctors telling me that I shouldn't wait too long to try to get pregnant. Can you imagine hearing that at 19? Not healthy! I've been concerned about it ever since. I don't know why I have to be one of those women who really really wants to be a mother, and know what it feels like to be pregnant. Why couldn't I just be a woman who is ok with the idea of not having children. But no, I really want to be pregnant one day. But the odds aren't looking so good. Today I told the doctor that I still really want to try, and I don't want to wait years to do it. She told me that that just isn't an option. She said that I'm young, I have plenty of years. I need to focus on my own health and making sure I'm ok and don't lose years off of my life before anything else. I agree that I need to make sure I'm healthy, but which is it? Do I really have plenty of years? I have endometriosis, Hashimoto's disease, and apparently Cushing's disease...all of which are leading causes of infertility. I know miracles can happen...but if it's already difficult after 30, shouldn't I be thinking the earlier the better? Oh I don't know...

I'm feeling overwhelmed again today. Probably just because I'm setting up more appointments that are pulling me away from work right at a very crucial time in my project. I begin observation next week, and if I'm not there to answer questions and make sure everything is on track, I'm a little terrified of what could happen. Plus I still don't feel like I'm super prepared for the observation to begin. I have a lot of data that I need to analyze and still even pull. It's just a lot on my plate right now, and I'm having trouble not throwing my hands up in the air. ESPECIALLY when I can't sleep at night and feel totally exhausted all day long. I just want to sleep, getting out of bed shouldn't be this difficult. :( At least I have some forward progress with the Mayo Clinic...

Why so much trouble?

2009-01-26T19:31:00.000-08:00

So I went back to the doctor to get my test results for the "baseline numbers" he wanted to compare pre-op and post-op. I had done a 24 UFC and a dexamethazone suppression test. I was worried that both would be normal and they would somehow dismiss everything else and send me back to the drawing board. But my family assured me that the doctor had confirmed the diagnosis, said I would definitely need surgery, and this was just a last step prior to going to the neurosurgeon, just to get him more numbers. Well, it wasn't quite so easy, of course.

I was surprised that my 24 hour UFC test came back high. The normal range is 4-50, my number was 69.7. I thought I was feeling kind of better, so I might have normal numbers. I guess my last 24 hour UFC was actually done wrong though, so that's probably why it has been my only test to come back disproving Cushing's...until this: I supressed on the Dex test. With normal cortisol production, dexamethazone makes cortisol supress, or drop down to a very very low amount. In Cushing's, according to my doctor, cortisol doesn't supress. But mine did, to below 1. My doctor said that's very unlike Cushing's, and the neurosurgeons may now want to "wait a while" to perform surgery. What? Wait a while? He didn't say they wouldn't want to perform surgery, or that I was no longer diagnosed with Cushing's. No, he actually said that it looks like I DO have Cushing's, but that they may want it to get WORSE before they go in and do something about it. He in fact said that because I have Cushing's, and because they found a tumor, they would most definitely need to go take it out at some point. And he also pointed out that Cushing's increases morbidity rates...it can be fatal eventually...so I would definitely need to get surgery. But he said that I may need to wait for it to get worse!!! I am blown away. How can you tell someone that they have a disease, that has a possible cure, but that they need to let it wreak more terrible havoc on their body. How can you say that I should wait until I in fact DO get all of the horrible symptoms of Cushing's before I can fix it? What's the point of modern medicine here? There's no point in "finding things early" or being proactive. I'm so confused, and upset. I had actually accepted the idea of brain surgery. I was looking forward to the possibility of getting better with these symptoms that I AM experiencing. I don't want to just get larger and larger, and then get purple stretch marks, and then a buffalo hump on my back. From what I've read, a lot of people look back after their Cushing's diagnosis and realize that it started long, long before. They can think of when they started putting on the weight, when they first saw those stretch marks. Then came the high blood pressure, diabetes, osteoporosis... But they had symptoms before all of that, too. They had the terrible fatigue, exhaustion, muscle weakness, pain, and difficulties with concentration early on. What if we caught mine before the other physical problems start. Can't we stop it now??

I've read that too many doctors rely on that dex test for the Cushing's diagnosis. At least my doctor still says I have Cushing's...so I'm not being dismissed outright. But I called into the number 1 neurosurgeon in AZ to see about getting an appointment, and the appointment scheduler asked if my vision field has been affected. I said I didn't think so, it's just getting blurrier. But I still have peripheral vision if that's what she meant. Well, she said that if I didn't have loss of visual field, I probably wouldn't get in to see Dr. W for a first consult until the end of February at the earliest, if at all. He wants to look at all of my labs, office notes, the MRI report and films, and I have to get a visual field test done and sent to his office before he even decides if he wants to see me. Wow! Because I'm not losing my vision (which can be irreversible once started), then I have to wait...that seems so weird. I know that those who are going blind should obviously get in there and get things going, but I don't think proactiveness should be punished.

I put in a call to Mayo Clinic and they said I could probably get in to talk to a neurosurgeon within a week. So we'll see how that goes. I just want to talk to someone, get a feel for a timeline or something. My endocrinologist told me at my last visit I shouldn't sit on this. Don't wait 6 months before getting it taken care of...well, it looks like that wouldn't be my fault. Oy!

Lupron is still the devil. :) I'm just super mean nowadays. Sometimes I'm good. Sometimes I'm funny, and laugh, and feel like the world is actually just as it should be. And then I'll just flip and somehow decide that everyone, and everything, is working together to make my life more difficult. I haven't decided if I'm going to continue taking it. My endo pain is getting better. I've been exercising more and I feel like I can breathe without all kinds of pain under my rib cage and sternum. It comes and goes. I still have pain when I pee the first time of the day, it radiates up my right side. Actually today that pain wasn't there, and then about 45 minutes into getting ready for work I started getting some bad crampy pain all over my lower abdomen. I went to work and it just got worse as I walked up the two flights of stairs to my desk. I don't know what it is or why, but those two flights of stairs absolutely kill me. Every morning I sit at my desk huffing and puffing after those two damn flights of stairs. And I'll have you know, they aren't even two consecutive flights. No no, one is in the parking garage, and the other is in the office. So I even have time to cool down in between! Ha! Pathetic. But this morning was hard because it hurt more than usual on top of the ridiculous exertion. I guess I need to get back in to talk to my gyn about the Lupron. I wonder if she'll know what Lupron does with the whole Cushing's thing. No one else seems to know. I haven't met with her since a month before my first injection. That's no good.

Alright, if you've made it this far in my post, congratulations...and thank you! Hopefully tomorrow will be a good day. Maybe I'll get a call from the Mayo Clinic to set up an appointment, now that would be a good day :)

Just stay afloat...

2009-01-21T22:20:00.001-08:00

I've been...a disaster. I cannot for the life of me seem to escape this stress. It's causing quite a few problems, health wise and of course with Ben and I. I think I'm heading for a bit of a crash, I've been feeling that really really ridiculously tired feeling a lot recently. Last time that started happening, I was out for the count for weeks. I'm gaining a lot of weight, my face is definitely breaking out bad now, and my skin is hurting all over. I just want to get away from it, but I can't. I have to accept it. So difficult.

I feel bad for Ben everyday. But recently I've been lacking in the tolerance category. He's having to cope with all of this, too. I need to give him time and understanding. But I just need to lean on him. I need support, because I feel like I'm drowning. We've been fighting over little things, stupid things. I get upset so easily, I'm really sensitive right now. And then he gets upset that he's upsetting me or that I'm being so sensitive...and then it upsets me that he gets upset...it's a vicious and totally ridiculous cycle. But then he will just hold me sometimes and I feel so much better. I couldn't do this without him.

The Lupron is the devil. Now, don't get me wrong. Nothing has changed. I'm actually getting used to it...which is EVIL! Because now, I'll have a mood swing and I won't notice that it's the Lupron. I'll just think that it's me, and if I'm feeling that way then it must be valid. Wrong! Not valid. It's hardly ever valid...but it's there, and we have to deal with it. Which was fine before when I recognized that Lupron was making me crazy. I have to remember the hormones! And honestly, being on Lupron when you find out you have a brain tumor and have to get brain surgery? That's just wrong. It should be some sort of requirement: get patient off of Lupron, allow chemical menopause to cease, then inform patient of said brain tumor!

I'm also struggling with work. What do I do? I don't have a timeline for when the surgery will be or how long the recovery will take. Apparently it's different for every case. What do I tell them? I'm in this rotational program, will I miss a whole rotation? I'm also knee deep in a controversial project for my current rotation...will I be able to finish it? Should I delay the surgery to be able to finish it? When I'm at work though, I'm totally worthless. I think about this stupid disease all the time...I think about the friggin surgery all day long. I do not, do NOT, want to get surgery again. My last one caused all kinds of problems, now this one is Brain surgery! No good...I'm worried about the pain and the recovery. I just want to know exactly how it will go. If anyone is reading this who has experience with this surgery, let me know what the recovery was like. How long will I be off work? Work is super stressful, and it will be for the next year or so until I'm out of the program...all kinds of projects, presentations... oY!

Ok, I think I need to sleep.

Quick Update

2009-01-18T16:12:00.000-08:00

Just wanted to write a quick something to keep everyone in the loop. I have an appointment set up with the endocrinologist for this coming Friday to go over my last test results and to get the information and referral to the neurosurgeon. I still feel like these results are going to be normal for some reason, and I have this awful feeling that the neurosurgeon is going to want to wait to do surgery after we get more positive results...but my endocrinologist disagrees. He said no matter what, surgery is needed. We'll see what happens Friday.

It's been a rough go. I'm super stressed out, not sleeping well at all, and having trouble accepting all of this right now. I finally got out and had a little escape last night with Ben. We went to a bar with some friends and just had a good time, with some good music. It was really what I needed. And I felt a lot better afterward and so far this morning. Plus, the Cardinals just won the NFC Championship...so I love that! Good sports are always ok by me!

Oh yeah, I think I had a small ovarian cyst rupture or leak last night. It was pretty bad for a little bit, but didn't last long which was good. I have no idea why that happened, but I'm just gonna move past it. I have so many things going on, just gotta take it one symptom, one side effect, and one moment at a time...

I may need to change the name of this blog...

2009-01-14T12:03:00.000-08:00

To add a new problem. I guess I'm relieved that I have some answers finally, but have you ever noticed that as soon as things start to get better, or you decide to move on, a curve ball is thrown? This feels like a little more than a curve ball...

I had my appointment with the endocrinologist yesterday. I wasn't excpecting anything because I figured any abnormal results would have been relayed to me immediately. I hadn't gotten any calls, so I thought it would just be another "well, let's keep testing- we don't know what's going on yet" appointment. That's not what happened. The doctor came in, shook my hand and I introduced him to Ben, then he sat down and started reading results on his computer. He sat with his back to us reading over result after result for over 5 minutes, in silence. Finally he turned around to talk. Fortunately, I had been reading over his shoulder a bit, so I was at least sort of ready for what was next. He said that they found a 4mm pituitary tumor that is causing Cushing's Disease. So far, all of my tests have been Cushing's positive except for one, and it turns out I may have done that test incorrectly. So, because Cushing's is progressive disease, and the tumor will continue to grow and cause more adverse effects, they have to do surgery to remove it. At this point, I have two more tests they need me to do before I speak to a neurosurgeon, just to get some more baseline numbers. When those results come in, my endocrinologist will refer me to a neurosurgeon he thinks is best. They refer to Barrow Institute, which is apparently a very prestigious neurosurgery institute. I feel good about that at least. The rest of it, I'm still figuring out. I'm glad I have a diagnosis. I'm glad there's an 80% cure rate with the brain surgery. And I'm glad that we found it pretty early. I'm NOT glad that it's not at all related to endometriosis or Hashimoto's disease, and is therefore one more problem I'm going to have to monitor for...well...ever.

I still don't have a timeline. Hopefully I'll be done with these tests in the next few days and then see the endocrinologist again in about a week and a half. At that point, it's going to be up to the neurosurgeon. My endocrinologist told me not to wait to long. The larger the tumor, the lower the cure rate and the higher the chance I'll have to get multiple surgeries to get all of the tumor.

I'll keep updating with anything else I find out. And of course, this is all happening when I was just starting to feel better, and think that I could move on. I JUST started my new workout plan, and I was pretty excited. But, I'll keep working out until the surgery, it can only help.

A couple of days later...

2009-01-12T20:10:00.000-08:00

I got my third Lupron injection five days ago...and it's made quite the difference this time! I've had a bunch more hot flashes in the last five days, and almost every night I've woken up totally sweaty. It's not fun. But manageable. And I'm starting to feel a little relief, ladies!!! Wait, what? Am I really admitting that Lupron may actually have some sort of function? Yes, yes I am. So far, the last few days have been pretty good. I even started EXERCISING!! I know, take a moment to re-read if necessary. Exercising! Ben and I went out to the park with a frisbee on Saturday and I had to run to catch it quite a few times. And it wasn't hurting too bad. So we decided, this might be it. We should take advantage of it. So we went for a little mini run together Saturday afternoon. And then woke up Sunday morning to go out for another mini-run. We're using the Couch to 5k running program off of the Cool Running website: http://www.coolrunning.com/engine/2/2_3/181.shtml

I have the podcasts on my iPod and I tell Ben when to start and stop each interval. It's really great for starting a running program with injuries or if you haven't run in a long time...or ever. This is my third time starting the program- I've only finished once. But I have high hopes! :) I also went to the gym tonight for a little more cardio and some upper-body weight lifting. I did low weight, high reps. I don't want to overdo it, but I really feel like I need to hit the ground running (literally) in order to get going on working out again. Otherwise, I'm just going to get back into the "it hurts and I don't want to feel that pain again, so I'll just lay here on the couch where I know it feels ok" routine.

I have my appointment with my endocrinologist tomorrow to look more into my adrenal stuff...and hopefully find out why I have those awful exhaustion swings. We'll see if anything showed up on my pituitary MRI. The lab never sent me the results like they said they would. So who knows. I feel like I would have gotten a call from the doctor by now though if they found something. So it'll probably be another "well, everything looks normal now, so you're fine" doctors appointment. But I'm not gonna just leave the office. I want to find out why I would have high cortisol and aldosterone. And why every once in a while I feel like my muscles are complete mush and my energy level is totally missing. Eh, unanswerable? Maybe.

Lupron Journal:
Gained another couple of pounds since my last post. Have had a couple of bad mood swings as well. Plus, more hot flashes, and night sweats are becoming a regular. But I've seen a decrease in the pain up under my rib cage, and less pain around my right ovary as well. I still have pain in the mornings when I urinate, probably a lot of endo around my ureter like before. Ugh. No migraines or anything though! :)

I'm Back!

2009-01-05T18:58:00.000-08:00

What a couple of weeks! That last post was very negative for two days before Christmas, oy! I love Christmas so so much, I'm sorry I was such a bummer. I got better, just had to get that out of my system. Plus, I was missing Ben of course. But he's back now. I went out to Indiana to see his family and had a great time. I got to see where he grew up and meet his Dad. It was a pretty great trip. Then we came back for two days and left again for a 5 day road trip out to San Diego. Ben got to go to Sea World for the first time, he was so cute! We went with my brother and sister-in-law, and my niece and nephew. It was their first time, too. We had so much fun, and it reminded me all that much more just how badly I want my own kids. Yes, my 3 year old niece was acting like a three year old, but that's so great ya know? She's got her own personality, she's this little human- a little girl just growing up every day. And my 6 month old nephew is by far the cutest little boy in the world. He's so good, and so happy. I want one! :) Who knows how my journey with becoming a parent will turn out. It makes me sad thinking that it probably will be difficult, and maybe even impossible. But how can I know when I've never even tried. Maybe it will all be perfect!

I haven't heard back yet about the MRI. I did however get my 24 hour cortisol test results and they were normal. 25.9 with a normal range from 4-50. I don't know what this means because I've read so many places that one normal test doesn't mean anything...but then again, maybe those last high cortisol's were just flukes. It's all so confusing. Hopefully my doctor won't just brush me off because of one test result, I want to find out why I'm so all over the place. I'm not my old self, I miss how much energy I had, how strong I felt. I haven't felt strong in a long, long time. I have an appointment with my endocrinologist on January 13th.

Now onto the endometriosis talk! Third Lupron injection is tomorrow!!! Crazy, I can't believe I've been on this horrible drug for two full months. Now, horrible is definitely subjective. Sometimes I totally abhor the Lupron, usually when I'm crying hysterically about a completely irrational moment, or moments unfortunately. The mood swings are the worst part about this. That and the weight gain. I'm not sure about the weight gain. I've got crazy hormone imbalances related to my adrenals, I'm not exercising like I used to, and I'm stressed out. So the weight gain could be from so many different things. But the mood swings, I know what those are about. They're so very Lupron- they're almost synthetic. They come on so fast, and I'll get set off by the tiniest thing. All of a sudden I'll be furious about something so ridiculous. And then eventually, I'll realize what's going on and start crying uncontrollably. Or I'll cry because I feel guilty, or because I hate fighting with Ben. And then just as fast as it came on, I'll be happy as can be. That's usually because Ben says something or does something completely fantastic and makes me feel like the luckiest girl in the world (I am by the way...). But the worst part is that I can't get out of it until Ben helps me, it's like I don't have any control over it. He seriously is the only way to fix my moods. I probably shouldn't rely on someone like that, we've discussed that side of things, but with the present situation I can't imagine any other way.

Lupron Journal:
Two months down. I still have pain up under my right rib cage, around my liver. When it gets really bad it hurts in my right shoulder, especially if I lay on my left side (like gas pain after abdominal surgeries). I have pain in my lower right abdomen in the mornings, around my bladder, ureter area, sometimes up to my kidney. That goes away usually a few minutes after I go to the bathroom for the first time. It's no fun. I also have pain any time I wait too long to go to the bathroom, and it gets worse the longer I wait. There has to be some endo on my bladder/ureter. Apparently it was totally covering my ureters in my first surgery, and there again in the second. I thought they got it all though. But then again, things got quite a bit worse a few months after my second surgery, when I stopped taking BC pills for three months. I guess it really did come back with a vengeance. I've gained about 10 pounds since I started Lupron two months ago. Not happy about that! And my skin is still a little iffy, sometimes it's fine, but I break out a lot more frequently than I used to. I get hot flashes every now and again but they're pretty quick. And I still think they're funny! My sleeping pattern is so confusing I can't chalk it up to anything. Tired all day, exhausted in the mornings, totally awake at night. Argh.
However, some of those scary side effects I read about haven't showed up at all. I haven't gotten any migraines, no nausea, no memory loss (I think, haha), no panic attacks, no night sweats, and not much additional joint pain. Hopefully it stays this way!

Chestnuts Roasting

2008-12-23T09:27:00.000-08:00

It's almost Christmas, I just can't believe it. I absolutely adore the holidays, I think it's something to do with my love language being "gifts"... Anyway, I got to frolic a bit last night in the rain, skipping from store to store finding the perfect Christmas gifts for each person on my list, checking off items one by one, feeling wonderfully productive and glorious all at once. Was that the scene?

No, no no. Last night I could hardly keep my eyes open. I love the holidays, but they're killing me. I have too much to do, too much stress, and not enough time. I wanted a nap so badly last night it was going to eat me alive. I even laid down for about five minutes with the lights off, just to torment myself that much more. As I began to drift off with dreams of sugar plum fairies dancing in my head, I squashed them with the thought of my "To Do List". Very messy.

I attempted to put on my most comfortable jeans, the ones that I bought back in my "not so fit" phase, to the joyous feeling of "suck it in, let's do this"... Yes, even my fat jeans are tight, friends. I've been wearing jeans with holes in them a lot more frequently now a days. Holes where the belt loops used to be before I ripped them off the ump-teenth time I tried to pull the waist up over my adorable little pudge. For a girl who knows pregnancy won't be an easy feat, it's really mean how 5 months pregnant I look right now. I threw on an over sized sweatshirt to cover...well, everything...and ran out the door.

The rain is usually alright with me, I even like it. It's a needed change in this sunny state I live in. Those Christmases of the past that felt like a summer vacation sort of left me wanting something more. So I love it when it's a little gloomy and grey around Christmas time. But last night the puddle outside of my truck door was taunting me. I really think the puddle was there to spite me. I stepped in approximately 7 puddles over the course of my four hour shopping spectacle last night. Each one a little deeper and colder than the last. And each one adding to the sog I was accumulating in my borrowed pair of socks (thanks baby, you know you love me...)

I managed to maintain a little holiday cheer as I drove from one shopping center to the other, merely because of the Christmas music that I found on the radio. If I would have had to listen to hip hop or top 40 last night that would have been it. No one would be seeing this menopausal muffin on Christmas morning. I'd go into hibernation, mostly to save my family from "the wrath". But I took some deep breathes and listened to Nat King Cole make me remember what it's all about. And I drove on. About $400 later and only two people being knocked off my list, I started to get concerned. Not only because I was having trouble shopping for "the list" and not "myself"...but because a very familiar and daunting pain was creeping up. I started having trouble standing up straight- something I've gotten far too used to. But I wasn't about to go home with TWO people marked off the list. So I kept going, only to find that keeping going is like spitting in the face of endometriosis. Have you noticed that? It's like endo has some sort of spiteful personality. "Oh yeah? You wanna shop? You think you're stronger than me? Well here, have a little ovary pain. And maybe a touch of diaphragmatic endometriosis to remind you every minute of every day. Oh, and you're still walking? Well fine, I'll add some gas pain and trouble breathing to the repertoire." What a jackass.

I finally made it home, in one soggy and disgruntled piece. I got most of what I needed, and a little too much extra. But didn't leave myself much time for chores and sleep. After laundry, kitchen cleaning, and finishing a little arts and crafts that I needed to do, I ended up in bed around 12:30am. I had to wake up this morning at 6 again... I'm sleepy.

Numero uno problem with the tiredness right now is that I have my MRI in about 4 hours. I am a "twitcher". Do you know us? We're the ones who smack you in the forehead on the airplane right when we're dosing off. Chronic twitch does not work well with "still environments" like an MRI for instance. When I'm as tired as I am right now, I can fall asleep anywhere they let me lie down. Yep, I've fallen asleep in an MRI, CT Scan, ambulance, physical therapy, you name it. I fell asleep "stretching" with my personal trainer once. I was training really hard though, very tired. In any case, I'm worried I'm going to twitch in the machine and they'll never be able to finish my stupid MRI. I'll be doing those images for hours. "Amy, please hold still" ... "What? Where am I? Oh, sorry- slipped off there for a bit". Over and over and over again. This could get ugly.

Blah! :(

2008-12-21T12:09:00.000-08:00

What a horrible day. I just dropped Ben off at the airport for his week long trip back home...without me. I mean, I don't think it's normal to be this sad about a few days without someone. But alas, I get to go visit him and his family the day after Christmas. So I'm excited about that, and a little white Christmas time as well. Although, it has been really cold here in Arizona, so it feels more like winter which is nice.

To add insult to injury, I've got a cold. Sad sad sad. I started feeling bad a couple of days ago but just at night. And with my ridiculous sleep patterns, I haven't been getting enough shut eye. So I think my body just gave in. Hopefully I'll be feeling better by Christmas.

I still can't stop thinking about this cortisol/aldosterone situation. MRI is on Tuesday, I wish Ben could be there. But it's not that big of a deal...I've had so many MRI's before, just never on my head. I wonder what the contrast will be like, I've had contrast injected via IV...I'm guessing that's what they'll do.

I had a rough time yesterday morning and the night before with my moods...but I'm getting them under more control every day. Right now my biggest concern is the weight gain- but a lot of that is from a lack of exercise. A few walks here and there won't combat my increased hunger!!! I'm seriously hungry alllllll the time. That's something I know will be hard for me to control. I'm a foody. So far I've gained about 7 lbs since I started Lupron 5 weeks ago...but my clothes don't fit me at all. And my face is so much rounder!!! It's awful. I'm sure it's not all the Lupron, I've been stressed out, I haven't been able to exercise, and well- I like to eat. Ben and I are gonna buy bikes for Christmas though, so I'm still hopeful.

Fumbling

2008-12-16T19:08:00.000-08:00

Lupron Journal:
I've had some increase in abdominal pain since my last post. This pain is kind of all over the place though, so I'm having trouble pin pointing what it is. It definitely hurts pretty bad under my ribs, where my liver is. But my actual ribs have been hurting quite a bit, like I got into a fight or something. It feels almost like muscle pain. And it's on both sides. Yesterday was worse than today, so it's starting to go away- but it was super weird. I thought maybe I fell or something, but no luck. Just random pain apparently. I've been dealing with some crazy sleep patterns as well. I'm ridiculously tired all day, and can't get out of bed if my life depended on it. And then around 8:00pm or so, I'm wide awake. I could go climb trees or something. It's awful! So I've been trying to nap during the times that I'm tired so I can get some sleep- last night I fell asleep at 8:30...but then I woke up at 11:00pm and couldn't fall asleep til 1:30am. Oy!

So at this point, I'm wrestling with all kinds of emotions, thoughts, "symptoms"...I can't get them all straight. With these past test results- high cortisol, high aldosterone, no ACTH stimulation- I'm so confused about what's going on in my body. I've been doing research of course, and I've found so many Cushing's Disease symptoms that match what I've been going through. But so many of these symptoms are menopausal as well. And so many match up with endometriosis, and PCOS, and Hashimoto's... what do I do with all of that?

So I'm getting an MRI of my pituitary next Tuesday to see if there's anything there causing any problems. And then I have another appointment with my endocrinologist in January to go over everything and see what the next steps are. All I know is that I need to get my cortisol levels down, because that can only lead to bad things.

My next step on the home front is trying to alleviate some stress. I can't do anything more about work, I've gotten everything as organized as I can. The rest of the work has to happen. But I need to focus on getting some good sleep so my body can heal, and trying to relax! I'm gonna go back to getting massages hopefully, and I'd really like to start yoga again. We'll see how this plan goes...

24 Hour Urine! Oh my!

2008-12-13T22:45:00.000-08:00

Love that title. I'm gearing up for my 24 hour urine collection tomorrow. :) I've got a beautiful brown bag that I have to keep the collection in, tucked away in my refrigerator...gross. They'll test my cortisol levels to see if they're high over the entire course of the day, rather than just spiking in the morning. I guess Cushing's syndrome comes from having high cortisol in the evenings, as well as the mornings. Normally, levels are highest in the mornings, and drop off over the course of the day. That cycle is lost in Cushing's. So that can lead to "night owl effect"...which I'm sure you've seen is a problem of mine from the times I post on this blog. I can be totally dead all day, especially mornings...and then night time comes and I'm wide awake. The only time that goes away is if I'm seriously lacking in the sleep department (and Lupron's not helping terrifically in that capacity). But that's what I've been like my whole life pretty much-and I know a lot of people have that same thing goin' on. There are definitely "night people" out there who just don't do well in the mornings...so maybe that's just it. Who knows, I'm just seeking information at this point, and peeing in an awkward brown bag.

I was looking at my test results some more, and with my elevated cortisol and aldosterone, I also showed an interesting lack of cortisol stimulation from ACTH. They injected me with ACTH which should normally double your body's cortisol levels within an hour...and mine hardly went up at all, and then promptly dropped down below my baseline level by 90 minutes in. That result normally proves adrenal insufficiency, but usually you have low cortisol with adrenal insufficiency. So I don't know. And I'm still not really sure what role high aldosterone plays in all of this. Or if endometriosis could be a factor, or the Lupron. Oy!

I did want to report that my pain levels have been pretty good the last couple of days. And I've been having an easier time controlling my mood swings (easier, not perfect). I still have pain up under my rib cage, and at times it feels very localized to right around my liver and up under my sternum. There is some random sharp pain throughout my abdomen every once in a while, but it's getting better. I have been ridiculously stressed lately though, and it's been taking a toll on me. I know it's got a lot to do with this new test result, and the unanswered questions. Plus I have a huge project starting at work right now, and I want to be awesome at it. So I just feel really overwhelmed, and I don't know how to stop my mind from racing sometimes. I went to bed last night at 2am, and I woke up this morning at 8am totally stressed out, heart and mind racing, thinking about my project and my cortisol. I mean, that just increases my cortisol!! It's a vicious, vicious cycle.

At this point, I want so badly to calm my mind...but I'm a weak human being. And I want answers. And I feel like I can't rest until I know what's wrong with me. I feel as though there might finally be an answer out there for me- and it's been so long since I've felt that way. It definitely doesn't mean I'll actually get an answer, but I want one so badly... It's hard not to think about it. I want to feel well again, I want to feel lively and young. I want my life back.

Calling All Bloggers

2008-12-09T20:40:00.000-08:00

I hate doctor's appointments that leave me feeling like I need to spend the next two months googling and 'webmd'ing everything. So I got a bonescan today at the endocrinologist for some adrenal system testing he's been doing. I got a bunch of bloodwork done at the beginning of November, and we were supposed to go over it all as well as the bone scan today. Well, apparently I've "lost some bone" and have "excessively high levels of steroid in my blood". What? Come again? Oh, ok, high cortisol. I understood that. And apparently high aldosterone...never heard of that. Well, now I have to go get an MRI of my brain to "see where it's coming from" is all that he said. Ok...to see where it's coming from- I'm thinking, maybe the MRI will show little firing signs: "Oh, THERE's the cortisol and the aldosterone...ok, now let's treat it". No, upon googling- the ultimate in accurate researching- I found that high levels of cortisol and aldosterone are frequently caused by pituitary tumors. Now that makes sense as to why I have to get an MRI and "see where it's coming from"...he wants to see if there's a tumor that's causing the excess production. Oh ok, sounds good. WHATTTT? Is this right? I know- benign tumor most likely, but what the heck? I hate that. And they simply told me they'd be calling my insurance to see if I need pre-authorization, and that can take "a couple of weeks" and then they would call the scanning place to have them call me to set up an appointment usually "a couple weeks or so after that"... I mean, honestly people. So in about a month or so I may be able to in fact get the MRI and then I have to wait for the doctor to call me if I need to come in to talk about the results. Probably "a couple weeks later" I'm guessing. Good Lord. So in approximately 6 months I'll be able to rest easy. Ridiculous. You do NOT tell me this when I'm menopausal...and you do NOT make me wait on scheduling for months before I can find out what's actually going on. I mean, I'm bound to cause a bit of a ruckus. It's my job, I'm chemically hormonal. What would we do without the wonderful chemically hormonal women out there? We make the world interesting. You think you've got women figured out? Throw one of us in the mix, and watch your head spin.

Alright, I'm just irritated. But does anyone know what any of this mean? Anyone have high cortisol or aldosterone? I asked the doctor if Lupron would affect any of this and he said no. And I can't see Lupron causing bone loss this early, especially because I'm doing a tiny bit of add-back therapy and I've been going crazy on the calcium and vitamin D.

I also got my second Lupron Injection this morning. It didn't hurt at all again. Everything's the same as yesterday except for my emotional outbursts due to my lovely endocrinology appointment. I still have pretty gnarley diaphragm pain...I'm waiting ever so patiently (haha) for that to go away. I wake up every morning thinking this could be the day, no more pain walking or breathing...nope, not today friend- not today.

Help me. Maybe my googling skills are below par. I saw references to Cushing's Syndrome, Conn's Disease, hyperplasia, stress, and some form of thyroid disease. I know I have high levels of thyroglobulin antibodies as well (Hashimoto's disease)...I wonder if that's related. And is the endometriosis related? I had high cortisol once in a test about two years ago but we never looked into it. It wasn't as high as it is now. I've never even heard of aldosterone... If anyone has any ideas about any of this I'd love to know. Waiting for who knows how long to find "actual" answers isn't my forte. ;)

Walk It Out

2008-12-08T17:01:00.000-08:00

I've been trying to walk more, just get moving and see what that can do for me. Unfortunately, I haven't had the greatest experience with this "get off the couch" movement. My diaphragm is rebelling against me. It's getting worse right now, but I tried the whole lying around not doing anything situation for a while and all that happened was an excess of cellulite... so I'm gonna try to keep walking through the pain. I'm not doing any intense workouts or anything- just a little "one foot infront of the other" action. Is that too much to ask?

I worked all day plus some today! I love that. Just saying it feels good. My diaphragm makes it difficult every once in a while, but it's not as bad as when I couldn't breathe and my lower abdomen was also screaming at me. So it's a great feeling to get through a whole day of work, even if it's with some pain. Today was my first day in my new department. I'm in a 15 month accelerated management program at work and we rotate every three months through the company. This is my second rotation and it's a project based rotation. So I'll be working on a few projects to help the department and I really want to be there. I don't want to have to tell everyone in my new department what's going on with me. That's my goal: let them believe that I'm fine, that I don't have anything wrong. And of course to blow them away with my awesome skills... ;)

Lupron Journal:
Walking is still hurting my diaphragm, but it's bearable (5). I've had some sharp pains all over my abdomen randomly that come and go really quickly (7). I haven't had too many hot flashes at all- but every once in a while they come. I personally think they're really funny! I haven't had one in a really awkward moment or anything though. But I just get really sweaty and hot and feel like my face is on fire. It makes me laugh! My face is cleared up pretty much now, so I guess that wasn't really Lupron...I don't know. The mood swings are a little less frequent right now, but I'm super easily irritated all the time. Once again, I feel bad for Ben. He's such a champion! I'm getting my second injection tomorrow, we'll see how this goes. Fingers Crossed!!! I'm also getting a bone scan tomorrow and I'm gonna find out about the tests we did on my adrenals. I'm guessing everything came back normal if I haven't heard from them yet.

We're going Christmas tree shopping tonight. We've already been shopping around to find a good one :) We're thinking just a little guy for Ben's apartment would be nice. His apartment isn't big, and we found a 6' tree for $20 that we might keep. We'll see tonight. Now if only we could get a puppy... haha!

So Many Swings

2008-12-06T09:42:00.000-08:00

I haven't quite made it to the gym yet, but I did go for a nice walk the other night with Ben, and it was really fun and relaxing. We had to run across a street once and I definitely felt that in my diaphragm, but I was ok. But the next morning I was in a ridiculous amount of pain. All of Thursday I was struggling, it felt like my entire abdomen was covered in adhesions or something. And I wasn't bleeding, so that's not it. I don't understand. Especially because I woke up Friday and it wasn't half as bad. It still hurt yesterday more than normal, but nothing like Thursday. Last night we walked around Wal-Mart at midnight (if you haven't done a little midnight Wal-Mart shopping, hit it up...it's a good time every time!) and I was feeling it in my diaphragm pretty bad. But it was all manageable compared to Thursday. So confusing.

I hadn't had a bad mood swing since last Saturday night...until last night. It didn't last long or cause too much trouble for Ben and I, but it's an awful feeling. I'm starting to see it coming now a little more. I get easily irritable and then I get sad easily. At that point, just about anything will set me off. And when I get set off, I get super mad, really angry, and then I get depressed. I wish I could explain it correctly- if I knew how these mood swings went before I started the Lupron, maybe I could have better prepared myself for it...maybe. I'm sure it's different for everyone who goes through the Lupron injections, but maybe this will help someone better understand what they're going through. So, last night's mood swing was over pretty quickly because we both kind of knew what was going on. At first of course I thought it was Ben's fault, but I realized that he hadn't done anything wrong about ten minutes into it. At that point I went from mad to super super depressed. Ben and I have kind of decided that we need to take a little bit of time to not talk when I start getting upset, because he takes it personally and I get even more irritated. So he walked away and then I felt ridiculously alone. It's a lose-lose really. But eventually we started talking again and I told him that it wasn't his fault, I just couldn't get happy right then. It took me about twenty minutes of Ben's valient attempts to make me laugh before I loosened up a little bit. I had to cry first. SOOO ridiculous. Please tell me I'm not the only one who does this on this drug...please tell me it's not me, that it's the Lupron.

Oh yeah, it all started from jealousy, something I've been increasingly affected by over the last couple of weeks. It wasn't anything that was even done, it was in my head. I started thinking about Ben with another girl...just thinking about it. And it PISSED me off. What's wrong with me? Man, I feel bad for him.

Lupron Journal:
Diaphragm pain is there this morning a little bit (2/3) which is weird because it usually comes on later in the day. It was pretty bad at Wal-Mart last night (6) every once in a while. I've been wicked hungry all the time, don't know if that's related. And I weighed myself yesterday and I'm the exact same weight as before the Lupron, but I'm so much bigger. I have trouble fitting into my clothes and my face is super round. And I wasn't working out before the Lupron either...so it's not just losing muscle and gaining fat. :( I don't know...it makes me sad. The mood swings are obviously still around, maybe getting a little more manageable because we know what's going on- but they're a little more intense (at least the sadness and depression part...I get really down).

Well, today is feeling like a better day, so hopefully I'll get through a weekend without any issues. I have my second injection on Tuesday. Does anyone know how big of a deal it is to get the shots exactly a month apart? I got my first injection on the 6th of November...I'm getting my second one on the 9th of December. I don't know how important it is. Comments? Suggestions? Experiences?

Can't think of a title...

2008-12-03T16:40:00.000-08:00

I'm feeling alright today. I had some trouble breathing again in the afternoon, felt like I had to struggle to get air in. But it's not horrible, and I'm thinking about going to the gym actually tonight!! This will be my first time at the gym since the week before my surgery, which was in JULY! Crazy, I used to be an athlete, and a dedicated one at that. It's pretty intense what this disease can do. I'm a completely different person than I was, both inside and out. I need to get back to that girl who could do anything. The one with confidence, with power, with good self esteem and goals for each day. I need to feel worthy again.

It's so important to remember baby steps, though. When I'm feeling good, I want to take over the world. But I have to take it one step at a time or I'll crash and burn. No crashing and burning allowed!

Lupron Journal:
Have some little cramps going on here and there, but manageable (2) and that deep breathing thing. My diaphragm doesn't hurt as bad as it has recently, so I'm super stoked about that. I stopped bleeding finally and I'm confident that I'll be on the up and up now that that's over. My face is also clearing up now...which might even be better than the decreasing diaphragm pain because I get so freaked out over not so lovely skin. I'm funny like that.

Seinfeld Mondays

2008-12-01T21:34:00.000-08:00

Ok, Monday Night Football is pretty stellar. But is there anything better than sitting on the couch with my honey watching old school delicious episodes of everyone's favorite? I mean, Jerry is good times people. I was just feeling rather lucky and wanted to write about it.

We actually didn't get to watch much football tonight because of a little escapade to my hysterical niece's 3rd birthday dinner. At a sushi restaurant nonetheless. What 3 year old loves sushi restaurants? Ok, she loves the "dragon noonles" they put together for her...and who can resist the picture with the cat? For those of you who do sushi, you know what I'm talking about. That Polaroid is priceless- especially when it's of a brand new "3 year old" with her Super Duper Outrageously Cute All Teeth No Smile Cheeeeese Smile. Precious. And then after the birthday festivities it was off to visit my cat and roommate (who apparently felt it necessary to buy us a FAKE Christmas tree this year...the roommate, not the cat) and then back up to Scottsdale with Ben for a little Monday night grocery run. Yeah, he's a good boyfriend. He skips out on massive amounts of football to go meander around TJ's in the search for the perfect meats. We spent a good 13 minutes in the meat section. We buy a whole lotta chicken, every time. Gross. Haha! But don't worry, we got back to his apartment with about 2.5 minutes left in the game. You're welcome baby.

I made it through the whole work day yet again. It's becoming almost regular again for me to go to work all day. It had been such a long time of an hour here, an hour there (on a good day). It's nice to feel normal. I had some pain up in my chest again today, I think it's from being on my period. I'm still bleeding by the way. Not too heavy, but it's there- just to make me crazy I think. Oh body, you're so sneaky.

Ps- Ben and I were channel surfing a little bit ago before landing on the inevitable Seinfeld re-runs and stumbled upon "Intervention". We've watched about a quarter of this show once and it's kinda terrifying to be honest. But the description said "32 year old hairstylist has endometriosis". Ok, on an Intervention show? This is the show where they trick the people with these awful disgusting horrible habits into thinking they're in a documentary and then throw an intervention from their loved ones at them, right? Is endometriosis a habit now? We had to watch. First scene, homegirl's doing meth AND heroine and discussing her two previous overdoses in the last six months. Um...ok? Well, the back story showed up and what do you know. She was a Mormon woman who had a lot of pressure on her to get married and have a big family, lots of kids... She was diagnosed with endometriosis at 30 and after surgery was prescribed Lortab for the pain. Well, she started popping pills and eventually stole a prescription pad from a doctor and wrote scripts for Lortab for herself!!! She ended up being a convicted felon from this little mistake and had to go to drug counseling. So, of course, she started doing meth and heroine instead- to escape the pain from the endo and from not being able to have children. I. Was. Blown. Away. What a wonderful story to hear about. I feel awful for this woman, but c'mon. So many of us are dealing with this in such a better way...I guess it empowered me a little. But it also really opened my eyes to how bad it COULD be. I'm lucky I have self control, I'm lucky I have such wonderful support, and I'm lucky that I'm absolutely terrified of pill popping...and heroine.

Lupron Journal:
Chest pain is still present and a little worse than usual (6) at times during the day. It's kind of up under my sternum right now, and on the right side by my liver...ish. Still bleeding, but lighter. I've been super super hungry lately, I don't know if that's related- but I've heard it can be. I'm definitely gaining mad amounts of weight (but not working out at all right now...so no fault but my own). And by the way friends, I've totally been breaking out and it suuuuucks! I'm like a teenager here. Gross. I'm blaming it on the Lupron because I've NEVER had skin problems. gross gross gross. Oh joy!

Weekend in Cali

2008-11-30T17:26:00.000-08:00

I went to a wedding this weekend in NorCal with Ben and my parents. We flew out after work on Friday for the Saturday wedding, and I'm so glad I went. It was great to go back to my old stomping grounds, see some old friends, and watch my friend marry the man of her dreams. It was a beautiful wedding, and a lot of fun.

I, unfortunately, am still figuring out my "issues" as far as the mood swings go, and I got really angry at Ben at the end of the night Saturday. I really didn't have good reason to be so upset, but of course I thought I did. And we had been drinking for a while at that point and I really think that could be the worst idea ever for a Lupron girl. Alcohol already makes me slightly unreasonable at times, add in some chemical menopause and I'm a real dream. ;) This was one of our longest arguments, we were both overly upset and not thinking clearly. But of course we worked it out before we went to sleep, and hopefully learned some important things about ourselves and our relationship- mainly how to deal with the present situation. I still can't believe I'm putting him through this. I'm in love with him, shouldn't I be protecting him? I really am trying my best...

We flew home today after not nearly enough sleep last night. It was a fully-packed weekend that's left me feeling totally over-spent. I'm having some really bad pain up in my diaphragm. I can't tell at this point whether it's from the fact that I'm bleeding again or from doing too much. But it's there with a vengeance right now. Just have to get through it, I've got a busy week this week at work. I have to be there all day every day. Welcome back to real life.

I got some great advice from a fellow blogger to start exercising. I want to really badly, I think I'm gonna start focusing on that a little more. When it hurts, it feels like any exercise would be the last thing I should do- but I've been working that angle for a while now. It's time to try something new. I think I'm gonna get some walking in, and maybe try to hit the gym for a little work on the bike here and there. Supposedly it helps with the mood swings, and I'd do anything at this point!!!

I've also been slacking a lil on my endo diet recently. That's gotta stop. I want to feel good again, I remember what it feels like- and I want it back!!

Lupron Journal-
Bleeding still, although it's startin to slow down which means this is a pretty short period for me. We'll see how long it last in the "light" phase. Bad pain in my diaphragm (6/7) most of the time today, but sometimes it gets a lil better. And I'm having pain down in my right lower abdomen again (4) that's really aggravating. Mood swings are at a serious high and I think I'm starting to lose my mind...on a good day. ;)

Thanks for the support you guys. It's so important for me to write all of this, and the fact that there are people who care enough to read it is really amazing to me. Just throwin that out there. :)

Pray for a good day tomorrow for the start of my long work week. Oy!

Undefined

2008-11-27T23:39:00.000-08:00

I feel so very lost right now. It's been an interesting couple of days, wrapped in a significant increase in Lupron "stuff", or at least I hope it's related- otherwise I'm frightened by my capacity for anger, sadness, and pain.

Ben's birthday went really well for the first part, almost the whole part, and then I started having a little trouble, getting some pretty bad cramps, and then worse- and worse. Eventually I was having trouble standing up, but I didn't want to let on to Ben so I tried to stay positive, cooked dinner, laid down to watch tv with him hoping it was what he wanted to do and not just my need for a little time off my feet. I was having really bad stomach pain (6), and then I got exhausted. I still tried to be happy, but later in the night it all started spiraling. I freaked out over a little comment, lost my temper, ended up in a sinking silent treatment, and then burst into tears that lasted for hours. These mood swings are so encompassing, it's like I lose myself completely. Like I can't see, it's all foggy and red- metaphorically of course. I just lose it and get deeper in until I honestly don't know what I'm doing anymore. And then the crying, the realization, and the horrible guilt for putting such a warm and understanding man through this time and time again. It's only been three weeks.

Pretty much the same thing today. Started out a little differently, I woke up with some cramps (3), and just wanted to lie around. Made some gluten-free pancakes for our Thanksgiving breakfast, and then started feeling better. I was in a bad mood though, and little things were setting me off from the get go this morning. But I tried to get around it. All it took after about five hours of trying to get around it was one misconstrued comment and I lost it. We worked around it because it was Thanksgiving and eventually got over it because we love each other. End of story.

But after Thanksgiving dinner with the family, Ben and I got to talk alone. It was a very refreshing, very honest conversation- the type that really reminds me that I'm not in this by myself, and that he loves me for real, good or bad. It helped me realize that a lot of my mood swings are wrapped in my ever increasing insecurities. I've definitely noticed that since the Lupron, I've been on edge with my self-confidence, and I've been in a downward spiral of insecurity about myself, my ability to react, my emotional stability, and my relationships. Anything can set me off in these touchy subjects. And the lack of control I feel when it comes to all of this is disturbing. I realized tonight that as much as I hate it, I do need to lean on Ben. Because he truly understands what I'm going through. I don't know how, but he has such a calming reassurance, and beautiful empathy. I think it's his love. But it may just be his soul. Either way, I'm blessed to have him. So many people outside of the endo realm have told me that they know what I'm going through or have offered suggestions, tips, stories from others they know who've gone through menopause. It's not the same. I have no estrogen. I'm 25. It's chemical. It's disgusting really. I can't explain it, it all started so quickly and just kicked my ass. I'll have two good days that make me believe, and then two days that send me into a darker place than I've been in a long time. But those good days make enormous headway for me mentally. I live for those good days. I wish I could just swim in them, breathe them in, freeze frame it and sleep next to it. I'd roll around in those good days. But at least I know they're there. And they're delicious.

In any case, here I am. I started my period today and it was awful. I've been in pretty gnarly pain for the last 11 hours or so (6). And I'm drowning in these mood swings right now. Wondering if I'll ever be solid again. If I'll ever be strong or stable. If I'll know what it feels like to function properly. If I'll ever be a mother.

But tomorrow could very well be a good day. I'll sleep on it.

Happy Birthday Ben!

2008-11-25T16:47:00.000-08:00

It's been a little while since I've blogged, busy birthday weekend for my absolutely amazing boyfriend. The man deserves a little TLC after all I've put him through. And it's only just begun... ;) Haha! No no, I think I'm on the up and up. I think.

This weekend was great, I got to do some of that jumping up and down stuff I was talking about on Friday. Ben and I went to the Cardinals vs. Giants football game on Sunday and had an absolute blast. I decided to go off of my gluten-free existence for the day to celebrate with Ben, and that was a huge huge mistake. At this point, I think the gluten-free, soy-free, lactose-free diet is really contributing to my decreased pain. Because I was in miserable shape Sunday night. I felt dizzy, sick to my stomach, ridiculously tired, and very much irritated at the fact that I brought that wonderfulness on myself. They say Lupron increases your appetite. I'm gonna go ahead and agree with "them". I ate a hot dog, nachos, chicken strips, french fries, licorice, and two beers, in the span of four hours. MY WORD! Yes, point and scowl in disgust. I deserve it.

After a short nap and one enormous hot flash, we met up with my family and had Ben's birthday dinner at a really tasty, very expensive restaurant by my parent's house. Yeah, I ate all of that before the big birthday dinner. Can I please blame it on the Lupron? Otherwise that's just disgusting. I started feeling a little better and was able to enjoy dinner, so that's good.

Today was Ben's actual birthday and we've had a blast so far. But it's time for me to go cook some gluten-free spaghetti. :) Happy Birthday Baby! I love you.

Lupron Journal:
I woke up with some of the old cramp-like feelings but they went away pretty quickly. I made it through a whole day at work again, and my ribs started hurting around 3:00 (4). I also started what seems like the beginning of a period. Will see what that turns into?? TMI, I know. :)

Believe It

2008-11-21T18:20:00.000-08:00

I made it through a FULL day of work today!!! Ok, so it was slightly shifted to a 10:30am-7:00pm schedule, but I did it! Granted, over an hour of it was a potluck...but I still did it! :)

I'm feeling pretty well so far. I just can't believe what a difference it makes, not having that constant pain is unbelievably relieving. I mean, I knew how frustrated I was, and how bummed out I'd become from the pain and its affect on my life, but I don't think I fully comprehended just how bad it was until it started to actually show some real signs of improvement yesterday. It's an answered prayer right now, and I couldn't be happier.

Yesterday I went to work about an hour and a half late, and stayed until about an hour or so before my normal shift ended. I didn't leave early because I was in a lot of pain. I just didn't want to push it quite yet. I was feeling pretty good, just a little bit of the chest pain and lower abdominal pain that I had gotten so used to. And then later, I wanted to go shopping for Ben's birthday next week. I seriously can't believe I was able to go shopping after being at work for that long! I'm blown away right now. Especially because after shopping and walking around looking for the perfect gift for a while...I was still ok!

I had some trouble sleeping last night, and then was absolutely exhausted this morning. I had some pain when I first woke up (4), but it went away after a little while. And then it came back as I was driving into work, going over speed bumps and then walking in from the furthest parking spot (the worst part about going into work late definitely). But after I sat at my desk for a little while and rested, it started to just go away. And then it NEVER came back. I'm sitting at the computer in the kitchen at 10:23pm, and I haven't had bad pain for about 12 hours. I'm absolutely amazed. I just want to freeze frame this, in case it comes back, to remember how wonderful it feels. I feel like I might get my life back. And it feels so good.

It's Friday, and I'm really excited about my weekend. I want to go run! I want to jump up and down, play Frisbee, play basketball, lift weights, walk around the mall, chase my niece around...I can't wait to live again!

For now, I'm going to take it one day at a time, and take it slowly. I'm gonna hope that this really is a turn-around, because that hope is the only thing that's gonna get me through another bad day. And I'm going to be so grateful for every wonderful pain free moment.

For all of us, just remember that life is still out there. Even in those really dark moments where it seems like it couldn't be further away. It's there, and we'll get it back someday. Believe it!

Good Night, Bad Night

2008-11-19T22:14:00.000-08:00

Another day of ups and downs. It's been quite a rollercoaster so far, but like the faith I still have in the stock market, I think it will have an upward trend! :)

I went to work for almost an entire day today! The longest I've been at work in a very long time. I was really proud of myself. Yesterday I went to work for half a day because I had doctors appointments in the morning, and I felt ok last night. I had a completely massive breakdown late at night with Ben again...but at least I pretty quickly recognized that it was totally Lupron related. I was a crazy person, completely lacking control of my emotions. I can't even remember what set me off, but I went nuts. I just got mad. And then sad. And then I totally shut off for about ten minutes. Finally, out of nowhere, I started crying and profusely apologizing. I knew what was going on, and I feel lucky every day that my wonderful boyfriend doesn't up and leave me at any moment. He just sat with me, he rubbed my arm, he promised that he wouldn't leave, and he told me that I am perfect no matter what. He held me, and he helped me.

This morning I was set on making it to work early. I woke up totally exhausted like I hadn't slept at all. I know I had trouble falling asleep, and was sleeping really lightly all night. When I pulled myself out of bed and went to the bathroom, I got some awful cramps that put me right back in bed for a bit. I was so frustrated. After a little while of laying down it got better, so I finished getting ready and went into work around 10ish. I made it through almost the entire day in my horribly uncomfortable skirt suit and heels...and my pantyhose was way too tight and digging into my stomach. With about an hour left in the day though, I could hardly get up from my desk. Really awful stomach cramps, and the old school back pain I used to get before my first surgery (6). I was struggling for sure. I made it all the way past 5:00 and left, smiling through the shoulder pain and chest pain that was increasing as I walked out of the building talking to one of my managers.

I was so relieved to get back to Ben's place and be able to unwind. When I stepped into his apartment, the first thing I saw was a dozen orange roses and a card sitting in the living room! He had written me a beautiful card reminding me that he loves me no matter what. It was perfect, I couldn't have asked for a better way to unwind.

I wish I could say the pain went away right then, and we had a perfect evening after that. Unfortunately, it hurt pretty bad all the way up until about 10pm tonight. And Ben and I got into another argument about Christmas trees and Christmas spirit about two hours after work. Riiiiiiiidiculous. But we talked it out like we always do, and remembered the whole time that we will get through this, and it's just a temporary evil. And he made me laugh. And he held me, and he helped me.

Just a side note: Right around the time I started feeling a little better, I thought it was important that we get some dessert. A girl needs a little dessert every now and then! So we went to Coldstone for some sorbet, and walked into a Cold Stone that was closed for reconstruction. If we hadn't asked one of the workers if they had already closed for the night, I don't think we would have noticed that there were saws, paint cans, empty ice cream containers, and construction tools all around us. We would have just stood by the unplugged cash register until someone kicked us out. SO we went across the street to the grocery store to pick up some sorbet. About thirty minutes and $100 later, we walked out. We realized a few things we both needed to pick up, and then Ben decided we should get our first Christmas decoration because we had talked about how excited I am about Christmas, and how weird that is :) And then, as we were standing in the obscene line for the one and only cash register...I saw it. We were standing right beside the display for the newly released Wall-e movie. I heart that movie. My eyes lit up, as Ben pointed out. He had apparently already decided he was going to get that for me as a stocking stuffer...but once he saw the look on my face, he picked one up. He said it's an early Christmas present. I'm a lucky, lucky girl.

A novel...

2008-11-18T21:14:00.000-08:00

I haven't written in a while! I had a good weekend, with a few mood swings, that's for sure. It's got to be from stopping the birth control...or can you get mood swings from the Lupron this early?

Ok, so to clarify- my last post when I just re-read it sounded like I was saying the doctor in fact saw tissue on my CT scan that pointed to endo. But I was saying that that is what the doctor said they could possibly use the CT scan for- to see small spots of excess tissue that would point to endometriosis. He hadn't read it yet. And he just read it yesterday and said he couldn't see anything in my lungs. So I'm very happy about that!!! We're supposing at this point that it's diaphragm or upper abdomen endo that's putting pressure on my lungs, and causing the pain and awkward breathing. My pulmonologist was very unhelpful though, and told me to stop taking deep breaths. Very strange, I mean...why? I don't take deep breaths because I want to, I take them because it feels like I'm not getting enough air. And so he told me that it's just a feeling, and to ignore it. Um, ok? Well, he's right in the fact that I'm definitely getting enough air. I apparently have super human lungs, that function at 128%, or in the 128th percentile. I didn't even know that was possible. He said it's from the years of training for swimming, and the fact that I'm 6'1". :) So that's good I guess!

I'm really getting excited for the Lupron to work. I haven't experienced horrible side effects so far, and it makes me feel like I'm going to be ok on it. I sure hope so! But it also makes me so sad, and kind of angry that this stupid drug can be so harsh on some people, and cause such horrible side effects. I know I have a long way to go, and the worst may be yet to come...I just wish they would find a cure! I wish Lupron could be an answer for everyone.

Lupron Journal:
Definite mood swings over the last couple of days. My poor, poor boyfriend. I'm a lucky girl. I also have had some pretty bad lower abdominal pain in the mornings and late at night (5) that resemble cramps. And I've had trouble sleeping for sure. I just can't fall asleep, but once I'm out, I'm out! So I'm happy for that, and hope it lasts.

I went to P.F. Chang's tonight and got to have some more of their delicious gluten-free menu! The Singapore Street noodles are so tasty! If you have a PF Changs near you, check it out. And I don't know if it's a chain, but Picazzo's Pizza has a gluten-free menu, and I decided to throw out the dairy free for a night so I could have some pizza. It was perfection! And the chicken wings were to die for. Mmmm! I'm also making more stir-fry's and I'm going to try some more recipes here soon.

I saw my old endocrinologist for a second opinion and he said the nodules on my thyroid are good to go. They haven't really changed in the last year. And when I told him about my problems in my abdomen/chest he was very confident it was all endometriosis related. He feels like the Lupron is a great choice, but wants to make sure I'm keeping an eye on my bone density. He said that I need to be taking 1,000mg of Calcium every day, but more importantly, I need to double up and take 2,000mg of Vitamin D daily. I wasn't really aware of that, so I'm glad I saw him. He's a really nice doctor, but not all that helpful usually. I asked him about my hashimoto's and he just shrugged it off again. That's why I'm seeing a new endocrinologist. My new one is checking out my adrenals, and looking into treating my hashimotos finally.

I went to work half days both yesterday and today, and I'm feeling a little more solid now-a-days. I still have worse pain than usual in my abdomen and up under my rib cage, but I just have an overall sense of "better". Before, I was always worried that if I did too much I'd be laid out for days. Now I feel like I could live a little, and I'll be ok. Let's hope that's right!

Friday Ramblings

2008-11-14T16:56:00.001-08:00

I got a CT scan today of my chest to see if they can find any signs of endometriosis in there. I think it's interesting that they're going to be looking for tissue build up on the CT scan to diagnose endo. I mean, doing surgery in your lungs to diagnose is obviously a little more risky than a laparoscopy of your abdomen...but I still don't see why they can use a CT of the chest and not a CT of the abdomen. ??? Well, the pulmonologist stated that they could see small excess tissue that would point to endometriosis...so I guess I'll believe him. I have the CT films in my car...I wish I could read that stuff myself. I see the pulmonologist on Monday for my pulmonary function test and then a follow up on the results to both. I'm having a much easier time breathing now a days, so I don't know what's going to turn up. But that pain in my diaphragm is still very present.

Lupron Journal:
Other than my little freak out last night, I think I'm doing alright on the Lupon so far. Slight increase in pain in both my abdomen and diaphragm, but like I said- easier time breathing. Today I didn't have much of the pain from my bladder, but had just diffuse pain all over my lower abdomen all day (4). And then once I went and did the CT scan and had to take several deep breaths, the chest pain and tightness got worse. Chicken or Lupron, people? I have no idea.

I'm excited for a little weekend time with Ben. No work, all play! I'm going to try to meet up with my coworkers for lunch tomorrow too! I had an absolute amazing meeting with my supervisor's supervisor yesterday that left me feeling so blessed to be at my company. Almost everyone is incredibly supportive and very optomistic about my future at the company. I got great feedback! I'm thinking more and more about taking the management track and becoming a people leader. I love working with people, and I'm a talker...so I think that will fit me. I'm still keeping my options open, but this supervisor seemed to think I had a fast track ahead of me, and that I was going places. Now it's just up to my health to let me get there! Stop holding me back, body. I've been there for you for 25 years, help a sister out. ;)

Ok, sidenote. I've had a lot of time on my hands to do some reading. I went to the bookstore the other day and picked up "The Last Lecture". If you haven't already, get it. Read it. Live it. But make sure to read slowly over some of the short pieces in the back, let them sink in. I was blown away by the simple truth splashed amongst the few pages in this little book. I still have about 15 pages left, but I can't wait to open it up again every time I have to close it. I'm pretty sure I'm going to feel lonely once I've finished drinking in the wisdom of this book. I'll read it over and over I'm sure.

Dynamic Blog Duo!

2008-11-13T20:30:00.000-08:00

So Ben is helping me blog tonight, because there's something I think he needs to get off his chest. Let me explain. Say we go back about three hours. I had just gotten to Ben's place after a courageous three hour day at work. Ben, after spending eight grueling hours at the office, got home before I showed up. He was on the computer. I sat on the couch. He remained on the computer. I watched some tv. Ben...sat at the computer. I got sad. Ben stayed on the computer.

Now, this was all in my head. Ben was sitting at the computer working on something after getting up to greet me, yelling from the kitchen several times that he missed me, and that he loves me, and then finally finishing quickly so he could come sit with me on the couch. We proceeded to chat about our days. Happy time.

In my head, we were chatting, and then Ben dropped the absolute worst bombshell known to mankind. He was taking a day off of work when I had to be in the office...for the entire day. He was going to be at his house, and I was...for the first time in weeks...not going to be there. I was devastated.

In Ben's head, we were chatting about our days. Happy times.

So I sank into a deep trecherous hole of a depression. And then I felt the right side of my body go numb because he was squishing me on the couch, cuddling me. So...I proceeded to tell him that he was making me very mad, and of course, that I wanted to kill him.

Ben was no longer having happy time.

Flash forward about twelve and a half seconds and we were laughing about the whole thing. I was obviously totally joking. On the other hand, as Ben so aptly reminded me a few seconds ago...maybe I should think twice before threatening his life. Point taken.

So when I sat down to write a blog about three hours after this fateful event, I asked Ben what I should blog about. "Lupron!" Quite the proclamation. "What about it? Have you noticed any side effects Baby?" hahaha! I absolutely adore his response: "Well, you threatened my life for the first time ever, that might be a side effect". Sad sad sad.

But at least we can laugh about it. ...and that's why I have the best boyfriend in the entire world.

Ups and Downs

2008-11-12T17:24:00.000-08:00

So I've decided that I found a pattern. My abdomen hurts more in the morning and gets better usually over the course of the day. And my lungs/diaphragm hurts less in the morning and gets worse over the course of the day. I think the diaphragm pain gets worse because I do things, causing me to breathe more and use the muscle more, causing irritation in whatever it is that's in there...probably endometriosis. I say probably because there's no definitive diagnosis without surgery. They just think that's what it is...but who knows. I'm hoping it is so the Lupron will fix it! :)

I think my abdomen hurts more in the morning from my bladder. I've noticed that my entire pelvic area hurts as I empty my bladder in the morning (too much again? yes, I know). I think going from a full bladder to an empty one is doing something to my abdomen, possibly pulling on adhesions or scar tissue or something? It's pretty excruciating right away, I usually have to curl up in a ball for a little bit right after I go to the bathroom when I wake up...but that gets better, and then doesn't hurt too bad any other time I go to the bathroom, usually. Strange strange. And I can tell it's getting a little worse right now, I'm assuming from the Lupron. Assumptions all over the place today. Just trying to piece it together at this point. I have no idea what to say to the question "how are you feeling?" lately. At least not to the people who actually want to know how I'm really feeling. Normally it's just "Good! Doing better!" But for those who I know are interested, I'm confused as to what to say. I've very hopeful the Lupron will work, I know that much!

Lupron Journal:
Having some trouble falling asleep lately! And then I'm totally exhausted in the mornings. I'm feeling more light headed today and yesterday, and the chest and abdomen pain are a little more intense at times (5/6).

I'm so lucky I have the absolute best boyfriend in the history of mankind to take my mind off everything, and give me a reason to giggle. He really is my reason to avoid grumpiness every day. I just adore him. PLUS, he's wicked helpful with my new diet. The boy's a health nut, I've decided. Now I just have to get him to kick dairy, and we're in it together. ;) Aw, just kidding.

Quick

2008-11-10T22:26:00.000-08:00

Lupron Journal:

The sharp pains were actually a little better over the course of the day today and yesterday. The mornings both started off badly, but then over the day, it got better. However, I was sick to my stomache all day today...really not fun stomach problems. It started going away around dinner time, after I slept for about 2 hours. I don't know what the sick stomach is about right now, but I'm definitely thinking more and more about seeing a GI doc.

I'm gonna go to work tomorrow, maybe a little while after I wake up so the pain will have a chance to subside. Let's just hope I'm not having to run to the bathroom every few minutes while I'm there. :(

Back to Normal...ish

2008-11-08T16:31:00.000-08:00

So Ben's back now, and I feel like my life isn't on hold anymore :) I like that. I really hate it when he leaves, that's definitely a good thing. And he hates it too...that's even better! hehe!

I've been feeling, well, off lately. Yesterday I had a massive breakdown at work, but it was due to a talk I had with my "mentor", a supervisor in my department. She thought I needed to talk to my direct supervisor about the possibilities of being held back from my accelerated program at work due to my lack of being there. Everyone else has been super understanding, and she was too, she just thought that maybe I should find out what my options would be. But she made the idea of being pulled out of the program to wait for next year seem very real, and that freaked me out. So I had a massive breakdown in a conference room. Then I sucked it up and went to talk to my supervisor. She was completely awesome and told me that I've been a high performer, and that's what's shining through now. She said she wants to play it all by ear, take it one step at a time. She said the last option would be to pull me out of the program, only if I thought I wasn't getting enough out of it or if I felt I wasn't performing well. So I feel better about it, and I'm still positive that the Lupron is going to help!

I also called my surgeon and spoke to one of his fellows about the rectal bleeding, and she was completely unconcerned about it. She said if it continues, I should see a GI, but that she doesn't think it's related to the endo because the surgeon checked and nothing was there. So I'm a little confused, but I'll probably see a GI soon.

I've been getting sick after pretty much every meal. Love that. But I'm getting used to it now, so that's good! :)

Lupron Journal:
I don't think the Lupron is doing much to me so far. I haven't taken the add-back therapy yet because I just got the perscription for it, but I've stayed on my BC so far. I stopped spotting yesterday, and started again today. So I don't know what to do about that. I have been noticing a little more feeling of light headedness lately (2/3) but have no idea if that's related to the Lupron or what was going on before with possibly my ardrenals. We'll see! And the pain in my lower right abdomen and under my rib cage is definitely still there, maybe getting a little worse right now (3/5 depending on the moment).

Day 1, or day 2,191

2008-11-06T23:46:00.000-08:00

Today I got my first Lupron injection. It feels like the beginning of something. I keep telling myself it's the beginning of the end of this disease and this pain, and then I don't even believe my own self. But I do have a sense of peace that this was the right decision. I have a sense of serious concern, worry, and oddly- peace. I think the side effects will be apparent, but I think the outcome will be worth it, even though it's definitely not a cure. I feel like I'm molding something here that will be more than I had thought I could become with this post-athlete body of mine. Whether it's something healthy or phenomenal, I don't know. But it still feels like it will be "more". And I'm not one to shy away from that sort of feeling.

I've been trying to figure out how I would organize this blog. It's really just odd ramblings about the peripheral of the damage being done to my body, foreignly. I love odd ramblings. But I also know that before I started this blog, I searched and searched for answers for myself. I looked all over the Internet, I sought doctors, tests, specialists...and what really helped me feel most centered was reading blogs written by other people going through journeys similar to mine. It made me feel in control, ready for the next step, and willing to do what it took to make sure my journey would be successful. I want that for other women who are struggling. I want to make this blog a power center for women who don't know where to turn or how to maneuver this disease, or other struggles they're having with their bodies. So, while odd ramblings are still my numero uno, I think some organization is key.

So, now with the Lupron started- the main reason I started this blog (the lack of understanding of the side effects associated with Lupron baffles me, and pushed me to put my own experience out into the world for others to learn from), I'm going to do a section each post dedicated to side effects, symptoms, and thoughts on what the Lupron may or may not be doing to me. As with any drug, the cause and effect of so called "side effects" is very difficult to differentiate: Is it the drug causing my nausea? Was it the salmon? Was it there before I started the drug? But I will list out what's going on with me each time I write, and hope that it might help someone who will possibly go through the same. Or it will help someone decide A) there's no chance in hell I'm doing that to my body, no matter what some study shows it might do to help the endo, or B) bring it on, if that wussy girl could handle it, I'm in. Double the dose, doc! In which case I respond, bring it lady.

It won't be at the beginning, middle, or end in particular. As soon as it comes to me to write it, I'll start the section. Maybe I'll entitle it: Loopy...or maybe just Lupron Journal. I would love to say I'll rate my pain, but those pain ratings are so strange to me. I mean, my 3 is someone's 8, and my 9 could be someone's 5. I just don't get it. What if I did a legend to the pain ratings. Hmm, what's happened to me that's happened to other people- Sleeping: 0, Watching my favorite tv show:0, Eating warm cookies:0...This is fun! I'm getting off track already. Ok, Paper Cut: 1. Hang Nail: 2, Dead Arm: 3, Hard Kick in the Shin: 4, Initial Jammed Toe Pain: 5, Locked Jaw: 6, Bad Air Pain from Laproscopic Surgery: 7, Massive Ovarian Cyst Rupturing without Painkillers: 8/9, (ouch), and some form of serious head trauma that hasn't happened to me: 10. I'm reserving that number for something outrageous. If I say I'm at a 10 one day, call someone. I'm not sure who, just do it, and ask them what to do...and then call someone else and make whatever that was they told you to do happen immediately.
Ok, keep up kids.

Lupron Journal: (can get kind of "Too Much Info" here and there...beware)
The injection was a cinch, almost as lovely as watching my favorite tv show, with an added bit of paper cut (0.5 wink wink). Clever. I really didn't even feel it, so for those of you afraid of needles, have no fear. The sight of the injection started feeling a little bruised around 5 hours after the injection (2). About 5 minutes after the injection I got some sort of rush of adrenaline and felt kinda dizzy, kinda shakey. No biggie though, went away in a couple of minutes. After lunch I got that stomach pain I get after I eat something bad, or the first couple of days of my period, kind of the "I need to get to a restroom asap" feeling (3/4). Went away pretty quickly. After dinner it was worse. Actually had to get to a bathroom. Also, the last couple of days I've been showing some pre-period signs. Today I actually spotted a bit a few hours after the injection. No idea which came first there, the chicken or the Lupron. But there it is nonetheless. I've also had some on and off rectal bleeding for some time now, and never figured out what it was. Came back in full force this afternoon for no reason, just started out of no where. Bizarre. Especially with the new spotting I'm not supposed to be having right now, and the stomach pains. Sounds endo related?

There you have it...take it or leave it. I'm sure eventually I'll be far less detailed. Or will I?
*no*shame*

I'm calling the doc on the bleeding tomorrow, from all orifices. Probably should get the latter-mentioned checked out. I'm also getting blood tests done tomorrow morning for my adrenal symptoms. But mainly, BEN COMES HOME tomorrow (well, today now...it's late)! So excited!

New Endocrinologist and Lupron Nerves

2008-11-05T21:25:00.001-08:00

My appointment today with the new Endocrinologist was pretty good. He was interesting, very quiet, and had some good ideas. I got an ultrasound and the nodules on my thyroid are just about the same size as last year, so no worries there. But upon explaining all of the abdomenal pain and discomfort recently, as well as the fatigue, he started asking some other questions that really opened my eyes. He asked about any dizziness upon standing- yeah, crazy amounts lately. He asked about my skin- way dry lately. He asked a few more questions that reminded me of some strange symptoms I've been having and then told me that adrenal gland problems are connected to abdominal issues. He wants me to do some testing for my adrenals, and a bone density scan. I had high cortisol levels a couple of years ago, but we overlooked it. We'll see what these tests have to say.

Well, I'm pretty nervous about the first Lupron injection tomorrow morning. I really wish Ben was here right now. He's across the country, thousands of miles away. I haven't seen him in three days, the longest we've gone without seeing eachother since I had my laparoscopy in California about 4 months ago. He comes back late Friday night, and I can't wait to have him back here. He takes such good care of me, and I always feel better when he's around. I don't know how he does it, but Ben can make me smile no matter what's going on. I'm the luckiest girl in the world. I promise!

My diet's going pretty well. I found some delicious new snacks. First, there's the "Enjoy Life" brand soft baked chewy chocolate chip cookies. Really tasty and allergy aware. I found some Amy's frozen meals that were pretty good- mexican casserole and asian stir fry. All gluten-free. I'm loving hummus right now, and I found some Nut-Thins crackers that are tasty and gluten-free to dip. I've been eating berries like it's my job as well, yummy!

I'll keep posting on how the Lupron goes. Wish me luck, I really hope my body handles it well. I need a break! :)

So I'm premenopausal...

2008-11-04T17:51:00.000-08:00

I finally got the call on the Lupron, and I'm scheduled for the first injection on Thursday morning. Will I feel anything right away? From what I've heard the first couple of days are same old, same old. And then it starts a few days later. And I've heard the first couple of weeks are pretty bad because of the surge of estrogen. What are those first bad symptoms you all have experienced?

Ok, some explanation about my reasons for going with the Lupron despite my serious concerns. First, I've been dealing with the pain from endometriosis for about 11 years. The real, life-altering pain for about six years. Not once in this time have I dealt with the kind of pain I'm experiencing now. And mostly, I've never had my life THIS altered by the disease. I'm not working. I'm afraid to exert myself. I was an elite athlete for 18 years. I had a heart disease and severe asthma, and I was still ok. Now I have this awful pain in my abdomen, under my ribs, and I can't get enough air. I'm tired, I'm sad, and I just can't deal with it anymore.

Plus, I got a bunch of blood tests done and almost everything came back normal. My hashimoto's disease is getting worse and it's affecting my thyroid hormones more, but we already knew about that. Nothing else came back positive. So I can't think of anything else that would be going on. And then yesterday's pulmonary appointment was interesting. I didn't mention the idea that the endo was on my diaphragm to the doctor. I wanted to know what he would think of on his own without that diagnosis. I told him I had stage IV endo and had surgery four months ago, and that they found endo all over my lower abdomen, but my upper abdomen was fine. After discussing everything, the doctor said "well, you know, endometriosis can get involved in the lungs". He thinks there might be a chance that I have thoracic endometriosis. Or pleural endo. I'm not sure how I feel about that. It can be really bad apparently, but it usually causes coughing up blood, and I haven't had that. I've only had the lung pain for about three months and I've only had two real periods in that time. So I'm not sure. But I think the Lupron wouldn't be a bad idea- because apparently if left untreated, thoracic endo can cause lung collapse, and be really bad.

So that's where I'm at. I have an appointment about the hashimoto's with a new endocrinologist tomorrow. Gonna ultrasound to make sure the masses aren't getting bigger. And then I start the lupron on Thursday. Wish me luck. And I'll keep updating!

Blogtastic

2008-10-30T13:51:00.000-07:00

I was so touched by a blog post I found today that was written about a week ago. I think I wasn't supposed to find it until today. I went to work for a couple of hours this morning for an important meeting, and spent almost the entire time trying to hide the fact that I wanted to crawl under the table and die. I think it was showing outwardly however, because I looked across the long board room table at one of my dear friends and colleagues and saw her looking at me with a slightly concerned face. I was sweating, clammy, shaking a bit, and having a really really hard time feeling like the air I was getting into my lungs would be enough to suffice. I had to yawn every thirty-five seconds to get more air...at a board meeting with a VIP of the company. There are only so many "eye yawns" a girl can do! There was stabbing pain in my right rib cage, it almost feels like my liver is going to get up and "peace out". Throw up the ol' peace sign and take off. I don't know if it's my liver or anything, don't get me wrong. But it's right there, somewhere around there. And it makes me want to cry.

So I went back to my desk and saw my supervisor who was very pleased that I made it in. See, she had taken some of those terms I discussed back to her house after work a few days ago and looked them up. She read up on Lupron, endo, PCOS, hashimoto's. And she said that she thought of me all night, and that she hugged her three year old daughter long and hard that night. She felt badly for taking her own ability to have her precious girl for granted. She told me to go home, get well, don't come back until I'm better, and that she was impressed by me. I couldn't hold the tears back all the way, although I fought off the good ol' burst of emotions. Just a single tear drop, and then a thank you. I got in my car and took a deep unsatisfying breath. I'm alone, but in wonderful company.

I started looking around at some of my blogs a few minutes ago and wound up back on Stuff Christians Like (a wonderfully comical blog, check it out!). For the first time since I started reading this blog a while back I went to one of the links on his side bar, another blog he writes called 97 Seconds With God. I don't know why I never checked it out before, but I was led to right then. His post blew me away. Something I needed to hear so badly! This is the verse he based his post on from Matthew 11:28-30:

28 "Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light."

He went on to push home a fundamental truth that I forget so much in my depth of guilt or insecurity. God wants me as I am. I don'tt need to find completion, erase all doubt, banish my imperfections, or accept every beautiful blessing He's offering before I come and bask in His gift. He just wants me to come, and just bask in it. He wants to be with me on my journey, not meet me after I've finished myself. He wants to hold my hand, carry me. And He breaks me so that I'll know I can't do it without Him. And oh man, I sure can't.

It's a beautiful post, go check it out. See what it does for you, if you feel like it might be something you're interested in. If not, maybe you'll find it exactly when you need it.

So, I'm not at work, but I'm not giving up on it. I'm just buckling down for the journey, and resting in the thought of being carried through it, instead of tiring my legs again. And I'm gonna go to those doctor's appointments with an open mind, a healthy appetite for wisdom, and a faith that I won't have to decide on my own, or make it alone.

Now, pardon the Too Much Info, it's time to go poo in a cup. Love that Western Medicine!!

Wheat/Gluten-Free Halloween Costumes?

2008-10-29T20:07:00.000-07:00

So I followed up my successful grocery shopping trip with a semi-successful costume shopping trip tonight. I had to make it quick because I wasn't feeling well at ALL. But I got a halo and a white boa... boring I know. But Ben and I are just gonna hang out with a few friends for a little bit, and no one is dressing up very much so it'll be cute. Ben bought horns. Haha, nice.

I got fed up yesterday afternoon when the shoulder pain kept getting worse and worse and I called my primary care doc. They fit me in for an appointment today and I saw the physician's assistant. She said my lungs sound good, but wants me to see a pulmonary specialist- that appt. is on Monday. She also sent me for a myriad of blood work and other fun tests...and I'll get those results in two weeks. Great. She gave me an inhaler and some singulair for the meantime because of the tightness to see if it will get any better. We'll see! I also set up an appointment with the endocrinologist who biopsied my thyroid mass last year. He's gonna do an ultrasound to see what's going on with the mass and then I'm going to force him to consider treating my hashimoto's. At least consider it. That's in three weeks. And I haven't heard anything about the Lupron yet. Razzle Dazzle.

So the big story for the day is that I wasn't 100% convinced about the endo diet until today. I knew we were gonna test for celiac disease today and you're not supposed to be gluten free before the test. So last night Ben and I went to Olive Garden and I swallowed (practically whole) a huge plate of angel hair pasta with meat sauce and four of the most scrumptious breadsticks ever. Then this morning I had a bunch of pita chips because, well, they're delicious. And then I got the blood work. So after the blood work I was feeling sorry for myself and so, being the genius that I am, I stopped and got some junk food. I bought Jalapeno potato chips and yummy peanut butter cups. Well about an hour after the blood test I started getting some stomach cramps. And then...the full on brutal awful disgusting stomach/abdomen pain that I have gotten so accustomed to. I mean BAD again. Gnarley. I'm officially going all organic, totally unprocessed, wheat/gluten/sugar/dairy/soy free from now on. I mean, my goodness. Tummy, please forgive me. I've learned my lesson! If you're having stomach or abdomen pain, try it. See what happens. It's unreal the difference it made free from processed food. Crazy!

Grocery Shopping

2008-10-28T11:05:00.001-07:00

So I made it to work yesterday! Yes, it wasn't until 1:30 in the afternoon, but it was still good to get out and feel normal for a bit. I'm gonna do the same today, go in after lunch and get a little work in. Should be good...and my co-workers still remember me. :)

I don't know why, I can't understand it, but the pain in my chest and shoulder is getting worse again. I'm on continuous birth control, so it shouldn't be doing the cycle thing like it was when I was off the pill. It hurts all the time, but for the last three months it gets much worse during my period. Well, now it hurts worse and I'm not on my period. I mean, I guess I technically should be if we're counting, but I'm doing continuous BC. Weird. Maybe it's because I've been trying to do a little more activity. I was hoping that's not it, because I really really want to move around more. But this is making it difficult. I miss exercise dag nabbit!!!! Ben gave me a shoulder rub last night that made it go away at that moment. But as soon as he stopped digging into my shoulder it came back. And my chest feels tight. I'm trying not to get psycho about it, but I'm wondering if it's something else. I got a chest x-ray and a CT scan of my chest and all was normal. So doc says that it has to be endo. Argh! But why would it make my chest feel tight, like I can't get enough air?

Alright, onto more uplifting news. I went grocery shopping last night! And I found a new snack for the endo diet who craves some sweet deliciousness- Pamela's Dark Chocolate Chocolate Chunk Cookies. I mean it just rolls off the tongue! ;) They're not rock hard like most wheat-free, gluten-free, dairy-free treats. They do contain a bit of Soy though, so if it's a no-go for you on the soy track, watch out. But it's not much, so I went for it. I mean, moderation, right? I also loaded up on organic fruit at the g-store and bought some organic chicken and turkey meat. I'm still loving hummus dip from TJ's, and for my lazy moments- Trader Joe's Mushroom Rice Noodle Soup Bowl is totally a craving fixer. I crave salt like mad for some reason, and this helps. I tried the Fig Newman's (wheat free, dairy free fig newtons) and while they're comical, not my fave.

Alright, gonna go get ready for work. I talked to one of my supervisors last night at work about everything that's been going on with me and she was really understanding. She even had me write some of the words down like Lupron, Diaphragmatic Endometriosis, Polycystic Ovary Syndrome, and Hashimoto's disease so she could look them up and do some research for herself. I love that. More people should learn about endo and these other diseases that are so common for women, but go unspoken in so many cases. I was embarrassed about it all when I was first dealing with it. I wouldn't really talk much about it, let alone mention the word infertility to any of my friends. But now I think it's so important and therapeutic to talk about it and educate others. I feel for all of those women and girls who don't know where to turn. I hope they find some answers, and figure out that they're not alone!

Nearly Monday Already???

2008-10-26T17:12:00.001-07:00

That dreaded question: will I be able to make it into work? I'm feeling ok today, had a couple of bouts of bad pain there for a bit after lunch but that's it. I had a burrito bowl, no tortilla, just chicken, black beans, rice, salsa, and lettuce. I thought that was pretty good! I don't know why I would have felt sick afterward. Sick and sharp pain. Weird. Well anyway, I think I'll be ok to go to work for at least a while tomorrow.

Now for the good stuff. Last night was Awesome! We went to Christopher's and had a delicious six course meal that I honestly didn't want to end. Started with a seafood platter and foie gras in some form that I couldn't write out if I was forced. Loved all of that. Then onto the first actual course of french onion soup that rivaled the onion soup I had in...France! Still not quite that wonderful, I mean, I took a picture of the onion soup I had in France. I wanted a keepsake. Yeah, that good. But this onion soup was the best I've had in the states by far. Onto the second course of a bib lettuce salad with a light viniagarette, topped with sweet oranges and green apples. Then we had the best course of the meal- seared scallops that I just wanted to curl up with. Seriously, I'd roll around in them if Christopher wouldn't mind. Succulent. Then we had truffle infused filet mignon encrusted with ground pink peppercorn. Not as good as the scallops but really delicious still. Then a course of artisan cheeses, some sort of humble fog something or other and a brie that was really soft and velvety. I felt guilty about eating this course the most...but moving on- our final course was a chocolate tower filled with the most unbelievable chocolate mousse I've ever had. So airy but also rich and dense. I can't even describe it correctly. Just go, eat it, you'll see. :) And in a side note that is only a side note because of my undending guilt- we had wine pairings with each course. If you only knew. I could cry about it right now, but I'm commanding my hormones; locking it up. Delicious!

Ok, back to the actual reason for this blog. That was a scrumptious little break though, wasn't it? :) So, I'm going back and forth again about the Lupron. Thanks to Jeanne's blog, (which is on my blog list- check it out, she's very informative and has been through the gamut) I got to hear a blogtalkradio session about endometriosis and some really interesting facts and ideas. Lupron definitely wasn't talked about nicely, but a lot of the main feedback was that it would be much better to do continuous birth control pills...which I've tried and haven't responded to very well. I don't know, still rolling it around.

Hopefully I won't have much time to roll it around and will get a call soon. For now, it's day by day- get to work when I can- try to live normally! :)

Glorious Weekend

2008-10-25T11:37:00.001-07:00

Mainly glorious because I don't have to feel guilty about not being at work, and I get to hang out with my amazing BF all day long :) I mean, he should really stop going to work too. Sympathy sick days? haha!

I'm feeling alright today, I only went to work for a couple of hours yesterday for a meeting, and started feeling pretty sluggish near the end of it. I've been getting super light headed at times lately, I think maybe from a lack of exercise or movement? But I also started getting super sweaty during the meeting, like I was gonna pass out or something. So I just left afterward and laid down for the rest of the afternoon and evening. Today's been better so far, still feel fragile in my abdomen- like I can't stretch or move around a lot, or I can't push on my abdomen without it hurting. I know, so don't push on it! Ha, but I mean, shouldn't I be able to push on it without it hurting?

Tonight is my dad's birthday dinner! We're going to a fancy restaurant and sitting at the chef's table, having the chef's menu, and my diet is going OUT the window. I've been doing a really good job, no wheat, dairy or red meat at all for a while now. So I'm stoked for a little treat. And the best is that I have no idea what it will be. I love chef's menus! If they think it's good, I'll trust the chef. Delish!

I'm getting SO anxious about the Lupron shot. I haven't heard anything yet, and I want to get this thing started. I'm just going to talk myself out of it if they don't hurry up. And since the pain is starting to get better, I don't want to feel like I made the wrong decision by going with the shot. But I've heard that the Lupron is a really good thing for the endo, no matter how bad it hurts. Plus, it's not like I'm 100% or anything, I still couldn't go for a walk or dance by any means. And I really need to get back to actually exercising. That's when I'll feel healthy again.

I think I might try to lay out in the sun a little today. It's gorgeous outside, and I hate being pale. It's amazing what a little color on your skin will do for the ol' self esteem! :)

I Sat At My ACTUAL Desk Today!

2008-10-23T16:33:00.000-07:00

I went to work!!! I know it seems like a normal function, one that most wouldn't think very exciting, but I'm so proud of myself. :) First let me say that I'm not one to take time off of work. I don't. I was a competitive swimmer for 18 years, dedication and hard work are key. Sick days, injuries, pain, or complaining aren't part of the game. And this disease made that SO difficult. I would swim through awful stomach cramps, really terrible endo pain, injuries, illness. It was necessary, and I was ok with that. But there were some times that I just couldn't do it, so I'd have to take a week off here and there- and it was like torture. Definitely not my style.

I've been on an intermittent unpaid medical leave for four weeks! FOUR WEEKS! That's insane. I never would allow myself to do something so drastic. But I couldn't go to work. I just couldn't do it. Every time I went over a speed bump in my car, every walk from the parking lot to the office, every stabbing pain that would hit me in the middle of a phone call. I couldn't pull myself to go. If it was absolutely necessary I would go into work for a single meeting and then get out of there fast. Well, yesterday, I went into work just to go to work! I sat there for three hours, did my job, chatted with my coworkers. It felt really good, like I almost had a life back. Then today I went to three meetings in a row, stayed at work for five hours before deciding to come home! I actually feel accomplished for this, which is so sad in so many ways; but baby steps.

The pain is starting to feel more generalized now, like my abdomen is sore, fragile really. That's a big difference from the sharp stabbing pains I was having consistently over the last four weeks. I'd like to say that the pain in my right ovary is going away, because the cyst ruptured a week and a half ago- so it should be going away. But I still feel some weird pain down in my lower right abdomen. And that awful nagging pain in my diaphragm haunts me. Just when I think it's getting better, I have to briskly walk for a couple of minutes and it's right back beating the crap out of me. Hard to believe, but it's an improvement.

I know this blog sounds like it's just a bunch of complaining, I feel like I need to explain what's going on- what the pain is, where it is, how it feels. It helps me in a lot of ways to write it down first off, but I also want this blog to be educational for others who are dealing with what I'm dealing with. If other people can relate, or have similar pain, maybe this will help them. Just knowing there are others out there feeling what they're feeling, it makes such a huge difference. And maybe there's someone out there trying to find answers, never been diagnosed, wondering what they're dealing with. I hope this helps some :)

On a much lighter and happier note though, the endo diet is going superbly! I've already met new friends through this blog who are helping me with the diet. Such amazing suggestions and support, I love the Internet :) I went to Safeway last night and found wheat and dairy free everything, it was unbelievable. I mean, Newman-O's?? Ben actually likes them better than Oreo's and they're wheat/dairy free and all organic! That Newman has a gift. TJ's has Organic Food Bars that have no soy, dairy, gluten...nothin but sweet sweet goodness. The chocolate chip flavor is a must-try. TJ's also has wheat and gluten free Brown Rice fruit juice sweetened bread. Do it!

My problem is that I'm not a cooker just yet. Still learning. I can make a delicious rice spaghetti with turkey tomato sauce that blows even myself away! And some turkey taco salad that's really good. Beyond that it's a mystery to me. So a) I really need food that's quick and easy and b) I really need to learn to cook. I've gotten some great tips that I'm so excited to try out, and I will absolutely let y'all know what else I find.

I also started taking fish oil pills, B-12, calcium, magnesium, and zinc everyday. My dad's been trying to get me to take vitamins for 15 years and I just never seem to do it. But with this most recent endometriosis kick in the ass, I'm on the vitamin bandwagon! I'll do anything. Crazy what this disease will do to someone. In any case, these changes can't do anything but help me. I need all the help I can get with the damage the endo and thyroid problems are doing to my body.

I'm still waiting for a call on Lupron, still taking Yaz continuously in the meantime. Has anyone else out there taken Lupron who would discourage or recommend? Just getting more feedback for myself. I, of course, will make the decision for myself. But it's never bad to have more information!

I'm going to watch Friends on TV...I still love this show.

Computer in the Kitchen

2008-10-21T10:50:00.000-07:00

I'm not at work again, instead I'm sitting at the computer in Ben's kitchen. That makes me laugh at least, sitting on a huge office chair in the middle of a tiny kitchen, staring at a computer screen that takes up one of only three real countertops available. Especially because Ben has a whole "dining room" sitting empty right beside me, but the man refuses to buy a table. He feels a dining room table is illogical. He wants a desk. But does not actually get a desk. And so, the computer is in the kitchen. Laughs, always laughs! I love that man!

Last night I decided I might try to make it into work this afternoon! The pain was a bit better last night, and I made a commanding decision that I'm not doing myself any good by waiting! So I'm going to try to make it to work to actually sit at my desk, take some phone calls, and champ out. I know, I'm awesome. You don't have to tell me. I impress myself everyday. Ha. It's the small victories, y'all know that.

I'm still waiting for the call on the Lupron. I know they said three weeks possibly, but I never thought it would really take that long. So I'm still hoping I'll get a call this week or something. We'll see.

Most important point of today's post- Ben and I went grocery shopping last night for the Endo Diet! I've never really tried to do any sort of food changes to help all of this, except for cutting out dairy because, well, I'm lactose intolerant and I just should. But I went wheat/gluten free last night at the store. And I'm cutting back on red meat! And I'm gonna go ahead and try to eat pretty organic from here on out too. And...drumroll...I'm gonna cut back on sugar. Probably. haha! TJ's is the absolute best store ever, Ben hadn't ever been there before he met me. He's a lucky man nowadays. ;) I spent over $100 but I think it was really worth it. I'm going to get better; Lupron, diet, surgery, whatever. Bring on the silver lining!

So it's time for me to take a shower. That's right, a shower! And focus on it not hurting as badly as yesterday. (I still have some cramping, upset stomach, sharp pains in my lower right abdomen- right ovary, and that pesky rib pain! The worst is that I KNOW that it gets worse when I move around more, hence the three weeks without working. But three weeks is long enough. Goodness!)

After I start working a little more, I'll build up with that, then I'm going to start walking again. Baby steps! And eventually I want to hit the gym again sometime soon, because from what I've read, exercise has really helped some with the Lupron. I'm just hoping I don't get the massive headaches. I've never suffered from headaches, and I don't know how I would handle that. :( But, it's all in the battle.

Not the Best Monday

2008-10-20T14:52:00.000-07:00

I was really hoping to wake up to a new feeling this morning, make it into work at least for part of the day, and start to turn a new leaf. There's always tomorrow!

I did, however, stop bleeding this weekend after three weeks! That was a rough three weeks for sure. Not the first time I've gone that long, and I'm trying new BC so I'm guessing that's what the problem was. They switched me to a new BC about a week ago after I had bled for two straight weeks on my last one (first time trying it). And the new one is stronger, so that should work. They really want me to go continuously rather than what I was having to do (mainly regular birth control schedule because if I tried to skip a period I would be doomed for a month of bleeding rather than a week). We'll see how this works until the Lupron injection. Still waiting on that call. C'mon insurance!

I did get a call from Dr.RH's office today, but it was only to report that I need to see an endocrinologist because of my thyroid blood test. My antibodies are high! No way! ;) haha, I know I know- why don't I have an endocrinologist already? Well I saw a few of them and the last one I saw did the biopsy of the masses on my thyroid at the end of 2007, and then with the amazing news that it didn't look like cancer, he sent me away- said come back in a year for a check up to make sure it's still not cancer. He didn't want to treat the Hashimoto's at all. So I got fed up and quit endocrinologists. Yes, I'm a quitter. If I don't have cancer then I'm good to go? I mean, I'm much MUCH better off than the alternative, but then why did I start seeing a bunch of doctors in the first place. It's not like I woke up one morning, thought to myself "Amy, it feels like you might have cancer, you'd better go get that checked out." And then found that, alas, my intuition was wrong. It's along my merry way again!

No, I had symptoms, irritating unexplained symptoms. And no one wanted to deal with them if they weren't due to cancer. So I quit. I figured, if they were ok with me quitting, then I was ok with me quitting.

Ok, in all seriousness I did get fed up with the cancer scares and the driving all over the state of Arizona, filling out new paperwork, faxing old medical records to doctor upon doctor. I stopped thinking about a possibility for any real change, for anything to help the symptoms go away. I was relieved I didn't have cancer, and I was done fighting. So I stopped worrying. Now it's time to get back up and take my health into my own hands again. I'm tired. I'm sore. I'm having that nagging lump in my throat feeling more and more. I think it's time to get my thyroid under control, and find someone who wants to help me! So I got a couple of referrals. And I got a referral for a Reproductive Endocrinologist as well, because the nurse said it's never a bad idea to get a jump start on my fertility awareness. I've got countless things working against me here, I should at least be on my own side working for me! :) So it's back to the drawing board, more faxing and driving. But at least I won't be sitting on my butt all day waiting for something to happen.

Weekend's Almost Over.

2008-10-19T18:45:00.000-07:00

Sunday night is never my favorite, thinking of the week to come. But for the past three weeks I haven't made it to work for more than a few hours a week. So it's a strange feeling Sunday nights nowadays. Always a fight, should I try to go in? Will I just have to leave? Will I break down and make a fool of myself? Will I be in pain?

The cyst ruptured last Monday evening, and my wonderful boyfriend had to carry me into his apartment for a mad rush of vicodin to mask the all-too-familiar pain. I stopped going to the ER for the ruptures a while ago, it's a bite down and bear it situation now. It had been a while since I had one rupture and I knew this one was coming, so it made it better that I was prepared with vicodin on hand and Ben knew what to do. I hate that he has to deal with that.

But the aftermath of the cyst rupturing is a rough thing, it's just so uncomfortable. Mine was hemorrhagic this time, so it's blood in my abdomen I'm fighting now. That makes it a little more inflamed, and quite a bit more irritating. Speed bumps, sitting down too hard, sometimes even walking feels like I'm paying for it. I'm just waiting for it to re-absorb into my body now, and I think it's on its way.

Friday night Ben and I went and had some sushi for dinner, and woke up Saturday morning feeling like I took a kick in the gut from a horse. Saturday night we went to my parent's annual wine tasting party, where I let the alcohol act as my vicodin for the evening. Never a bad idea in my book.

After about twelve bottles of water I woke up sans hangover this morning, but still feeling like I needed to track down that horse and give him a piece of my mind. But over the course of today it's gotten a little better. I think this week will be better.

I'm still waiting for a call from Dr. RH, unfortunately. She told me she definitely wouldn't make me wait for her over the weekend, so I'm a little disappointed. This isn't the first time I've decided to believe a doctor, to only be disappointed. But I'll hold out and give it a second chance. I need a doctor out in AZ! No more phone appointments with the surgeon as my main appointments. I think it's important to see someone in person.

I'm still waiting also for word on the Lupron. They said it can take three weeks for the insurance to approve it so I can get started. I'll be taking the add-back therapy also, especially because I have some bone trouble already and a slight calcium deficiency. Gotta be careful!

A Long Road to...now.

2008-10-17T14:41:00.000-07:00

I thought that was the worst of everything, that one night being totally embarrassed at a restaurant and feeling like a wuss. I thought the rushed pelvic exams in front of swim coaches and the crying in an ER waiting room would be the worst. And then the endometriosis actually showed itself. I had five more cysts rupture in the next four years. One while I was actually swimming. I could hardly get out of the pool. I switched birth controls about every 4 months trying to find one that would Actually stop my bleeding. I would get awful cramping in my pelvis when I tried to swim (which was twice a day most days), and the back and leg pain was contributed to herniated discs, but we think now that the endo probably exacerbated it. Finally, when I decided that I would retire from swimming and try to move on with my life, we looked into actually doing something about this "endo". I sought help from specialists at the Stanford Medical Center to no avail. But through the grace of God, a teammate's father was the head of anesthesiology at Stanford Hospital and knew Dr. N, a very busy and world renown endo surgeon. He saw me right away and agreed to do surgery within the month. That was June 2005, two weeks before my college graduation. The lap showed stage 4, with adhesions nearly closing off both ureters, and covering almost every organ in my abdomen. Half of my right ovary was removed due to cyst involvement, but both fallopian tubes were functional. The surgery took some time to recover from, and I had to stay in the hospital for an extra couple of days due to problems with my bladder function from the ureter involvement. But after about 6 weeks I was doing pretty well. I started immediately on another course of BC after refusing the Lupron (those side effects sound horrifying). After about 3 months I started to feel like I could live again. I didn't have another cyst rupture for a year and a half, and the pain was minimal for almost that whole time. After that, it started to creep back into my life again.

About 8 months after my surgery I started swimming again recreationally, and then about 3 months later decided to swim full time to try for the 2008 Olympics. It was May 2006. I was almost done with my Masters degree and couldn't wait to put my all into training. Once the cyst ruptured after my surgery, things started falling apart. I moved back to Arizona to focus on training, but I would get the pelvic cramping if I really tried to push myself during swim practice. The breakthrough bleeding got more persistent. I was managing it all pretty well until about December 2006. I started feeling constantly fatigued. I couldn't make it through an entire practice anymore. My muscles would shake, I would fall asleep eating, I was always thirsty. I decided that enough was enough and I finally went to see someone about it. My PCP thought I might have diabetes and sent me in for a myriad of blood tests. Nothing came back positive, this was not the first time that's happened- as those of you with chronic illnesses surely understand. So I kept pushing, thinking I was nuts, and of course feeling like a wuss. When I injured my back again at a swim meet in March of 2007, the thought of trying to swim through all of this again was too much. I gave up the dream of the Olympic games and started focusing on figuring out what was wrong with me.

An extensive thyroid panel showed elevated anti-thyroglobulin antibodies. Normal thyroid panels don't test for this, only TSH and T3/T4 levels. My antibody level was high, which means my body was attacking my thyroid. For some reason, my thyroid hormone levels were showing as normal, so my body was fighting everything off, but I found out that with the antibodies comes the diagnosis of Hashimoto's disease. Don't you love the sound of that?

Hashimoto's disease is a roller coaster of thyroid activity. It starts out with the antibodies increasing, then once they attack, the thyroid over activates causing hyperthyroidism. Then the thyroid slows down causing hypothyroidism. This swing can go on for any amount of time, sometimes a lifetime. But in most cases, the body kills the thyroid which will cause hypothyroidism. This can be treated with drugs, replacing the hormones the thyroid normally produces. Not an exact science though, and the drugs can cause serious swings in hormone levels. But until my hormones show a constant hypothyroid, they won't treat it. For now, I just swing back and forth. From cold and tired, gaining intense amounts of weight one month, to hot, jittery, hyper, and dropping weight unaided the next. At least it was nice to know this was happening instead of feeling confused. But still nothing I could do about my present situation. About a month later they wanted to do a routine ultrasound of my thyroid to make sure it wasn't enlarged. They found two masses that were suspicious which sent me into more tests and a biopsy of my thyroid. Luckily, I got the all-clear, just wait and see. That was December 2007.

In April 2008 I got a promotion at work, and all I could think of was how scared I was that I would have to miss work because of my pain. The abdominal pain was getting worse, and it made me tired and left me feeling at times emotionally unstable. I wasn't going to be able to be in my new position if I was staying home from work in pain, or crying because I was uncomfortable. I decided to go back to Dr. N in California to see what he thought about having another surgery. He agreed that it seemed the endo had come back and another surgery could help. I was excited to feel better again.

I had the surgery at the beginning of July 2008 in California and flew back to Arizona five days later. I had stage 4 endo again, but not as bad as the first lap showed. Only one of my fallopian tubes works now, but they cleared everything out and felt confident about my chances of reproduction for the future. Two weeks later I was back at work and doing pretty well. About 5 weeks later I started really moving around again and getting some light exercise. The first day of my first period after the surgery I ended up in the ER with severe chest pain, pain up under my rib cage on the right side that radiated to my shoulder. It was a lot like the gas pain after the surgeries, but sharper under my rib cage. All of the tests came back negative, CT scan, ultrasound- everything looked fine. They sent me home. The chest pain went from about an 8 to a 4 over the next three weeks until it shot back up to about a 6-7 a month later. All of this time I had not been taking any BC. I wanted a break from the constant bleeding. I thought if I just went natural for a while it would do my body good. That was my biggest mistake. The chest pain dropped back down to a 3-4 about a week later and then I started getting a very uncomfortable full feeling in my abdomen. I had sharp pain all over the right side of my lower abdomen. A few days after that feeling started I got a UTI that wouldn't go away with antibiotics. A CT scan revealed a 5cm cyst in my right ovary and possible kidney stones. I started on BC right away to avoid any growth if it was an endometrioma. An ultrasound a week later showed a 6 cm hemorrhagic cyst, and we decided to wait a few weeks to see if it would absorb or (probably) rupture. 19 days later it ruptured. That was a week ago.

This whole time I've been in correspondence with Dr. N's fellows at Stanford via telephone and they've been very helpful. They think that the chest pain is diaphragmatic endo and want me to keep up with the BC to try to get through it. But I needed a doctor out in Arizona I could work with more closely. So I started going to some GYN's out here a few weeks ago and I think I've found one- Dr. RH. She, unfortunately wants me to start Lupron, but was very patient with me and understanding of my symptoms and the emotional turmoil of all of this. She spent a long time talking to me and assured she would call me with more information once all of my charts from my previous docs and Dr. N come in. She also thinks the chest pain is diaphragmatic endo and thinks the Lupron will help.

Now it's the Lupron discussion. What a controversy! I've had doctors telling me to try it for five years now and I have always said an enthusiastic "Are you out of your mind?!" I've read all I need to read about the side effects, not a chance! It wasn't until this diaphragm pain came along that I've actually considered it. Dr. RH feels that burning off endo on the diaphragm is far too dangerous, although Dr. N has done it and wrote a paper on it. But either way, I couldn't get more surgery so close to my last one. So it's either BC or Lupron. And BC just hasn't passed the test.

So I'm deciding to go ahead with the Lupron, side effects and all, in hopes of getting this chest pain to subside at least enough to go to work and exercise. I haven't been to work in three weeks- just what I was afraid of. And sitting around waiting to get better is doing nothing but make me feel depressed and alone. It's time I do something about it, at least mentally I'll know I'm trying and can maybe get up and move around a little.

The long road until now has been taxing, but I'm optimistic about my chances of living a happy life (not pain free, not normal, but HAPPY). I'm surrounded by supportive people. My family has always been a source for encouragement and an advocate for progress for me and my well-being. They support me and love me unconditionally, and I question how they do it all the time! And my boyfriend is absolutely unbelievable. Who would have thought that a man could bring me so much happiness in the midst of such anguish? He's my light. I feel blessed to have so much love, I've been blessed since the day I was born. I know there's a plan for me, and while I know I should just give in and let it happen, I get so confused sometimes. Hashimoto's and Endo both cause infertility. Why would God let me want to be a mother so badly and then let all of this come, too? But I guess it's the tests and the trials that make the blessings such...well, blessings. :)

So here it all starts. I'll keep you updated on the process of starting the Lupron, the side effects, the next steps, and everything I'm feeling with all of it. If anyone out there has any experiences like mine, please reach out. I really hate feeling alone in these diseases.

Starting Line

2008-10-17T12:10:00.000-07:00

It's partially because I need to write all of this down, it's partially because I want others to understand, but mostly it's because I need to feel like I might be able to help someone else. I've read a few blogs from women who are dealing with endometriosis and other chronic illnesses and found myself nearly in tears at just the thought that I am not alone. I know it's cliche, but the loneliness, the alienation, it's almost the worst part.

I hope that someone reads this blog and has some ideas as to what to ask they're doctor next time they visit. Or maybe someone will read who has symptoms like mine but has never found a diagnosis. Possibly someone will read and find comfort knowing they can get through it, too. Maybe I will find a friend, and maybe I will find some answers. In any case, it couldn't hurt. So here I write.

I was 19 when I finally started asking questions about my pain. At nineteen I finally described the horrible periods, the massive bleeding, the awful pain, the unending nausea that had been going on every month since I was 14 years old. Mainly it was all started at 18 by a ruptured ovarian cyst that happened at a swim meet my freshman year in college. I was travelling with my team, we had just finished a meet in SoCal and headed to a team dinner from one of our sponsors. I noticed sharp pain that radiated down through my pelvis, horrible pressure, and stabbing pains throughout my abdomen. I had to rush to the bathroom to seek solace to cry, to figure out what was wrong with me. I was embarrassed. When a teammate found me on the floor of the bathroom, they carried me out and took me to the UCLA hospital. I waited in pain for 6 hours. They did emergency pelvic exams, CT scans, ultrasounds, nearly took my appendix out. Finally they found free floating fluid in my abdomen. Luckily, my mother was at the swim meet and could rush to the ER to find me. She explained her past, and a temporary diagnosis was found. My mother had an 11cm ovarian cyst rupture about twenty years earlier. The surgery they did after it ruptured diagnosed stage 4 endometriosis. The genetic ties for this disease are strong and once the GYN heard that, she was set on my diagnosis of a ruptured ovarian cyst. No laparoscopy to get an initial answer, but of course nothing definitive could be determined without one. So shortly after, at 19, I was prescribed continuous birth control to give my reproductive system a rest. I thought I was finally saved. I was young, and naive.