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...