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! :)

I'm Back!

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

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

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

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

Chestnuts Roasting

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

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

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

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

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

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

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

Blah! :(

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

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

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

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

Fumbling

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

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

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

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

24 Hour Urine! Oh my!

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

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

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

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

Calling All Bloggers

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

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

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

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

Walk It Out

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

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

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

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

So Many Swings

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

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

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

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



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

Can't think of a title...

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

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

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

Seinfeld Mondays

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

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

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

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

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