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!

Sleepy

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

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

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?

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?

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

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!

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...

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?

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

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!!!

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!

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.

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::

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...

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

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

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

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! :)

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!

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?

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...

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

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...

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...

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! :)