Saturday, March 12, 2011

Thursday, February 24, 2011


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

Tuesday, July 6, 2010

Thursday, May 6, 2010


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 :)

Wednesday, March 24, 2010

Endometriosis Awareness!

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!

Monday, January 18, 2010

I Did It!

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... ;)

Tuesday, January 5, 2010

Just keep running

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 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 :)

Wednesday, December 30, 2009

What a decade.

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!

Monday, December 28, 2009


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'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.

Tuesday, December 15, 2009


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. " 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

Sunday, December 13, 2009

3 Miles

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! :)

Thursday, December 10, 2009

How many miles?

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.

Wednesday, December 9, 2009


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?

Tuesday, December 8, 2009

A New Beginning

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 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.

Wednesday, May 6, 2009

I'm Engaged!

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 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 :)

Monday, March 30, 2009

Dr. Friedman...

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! :)

Tuesday, March 17, 2009


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! :)

Sunday, March 15, 2009


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?

Sunday, March 8, 2009

I'm back!!!

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!

Tuesday, February 17, 2009

Vegas, Baby!

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.

Tuesday, February 10, 2009


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!

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.

Monday, February 9, 2009


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 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...

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.

Friday, February 6, 2009

Quick Irritated Update

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.

Wednesday, February 4, 2009

The rambling mind of the sleep deprived

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 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.