Fat Kid Class, Vaginas, and Treats.

Last week I made the trek to Rochester, Minnesota to go to the Mayo Clinic. I'll be honest, I'm kind of sick of going. It seems to be a total coin toss on how it'll go and sometimes I feel like I'm getting really great information and other times I feel like they are looking for a reason to charge me out the rear on tests and stuff I definitely don't need.

This visit was two parts: 7:00 fat kid class about weightloss and how to do it, and then a 10:30 appointment in the Women's Health Clinic about estrogen replacement options. I drove down on Monday after my therapy appointment, so that meant I didn't get to my hotel until 9 at night. I was exhausted, and hungry, but it was so late and I didn't really know what to do for food. The gift shop was closed, the cheap restaurant was closed, Starbucks was closed, I didn't know how to get to any of the places within walking distances and not sure I'd find my way back, so I opted to eat the granola bar I brought for breakfast and call it a night.

Can I also just mention my thermostat was set to NINETY DEGREES?! I turned it off completely and it still never got below 78 in my room. I sweat my ass off all night because the fun part about beginning of menopause are the night sweats. I didn't get more than two hours of broken up sleep because it was so hot, the pillows are awful, and I forgot my CPAP machine at home. Frustrating.

So I got myself dressed at 6 and was out the door by 6:30. I got myself a water quick and headed to my class.

It was me, a couple, and another woman. That's it. We got a folder with information on how to count calories, good foods and bad foods, basically all of the common sense stuff we already know. They briefly talked about the services the Bariatric Clinic provides (medication, surgery). We did a little PowerPoint deal for about a half hour and then we all wait to see a Dietitian one on one. I wasn't last, so that was something. I was kind of worried I was going to be late to my next appointment because my schedule said this could last 3+ hours! Finally when it was my turn to see the Dietitian, I grabbed my stuff and headed over.

And dammit if he wasn't cute in a alternative band lover kind of way. He had Vans on his feet, a sweater vest that looked like he picked it up from a thrift shop and yeah.... he was pretty cute. Very distracting.

He's going over all of my paperwork and says I'm eating well below my recommended calorie intake, that's good, but he encouraged me to try to eat more. He mentions that I should add exercise in, and I say I couldn't because I feel like I have the worst flu of my life every single day and like I've been hit by an actual bus but nobody knows why. He agrees that if it's an auto-immune disorder I have to be very careful because exercise can trigger flares. He then sees I'm on steroids, for life, and got a bit of a dejected look because (bingo!!) that's why I'm not able to lose weight. He then starts talking about medications I can take that basically suppress your appetite. I can't take Topamax because it made my nervous system go haywire, so that's out. I'm already on Wellbutrin and I eat one meal a day, maybe a snack, too, but I'm legitimately not hungry. Ever. The only reason I eat at this point is with my medication because I'll throw up if I don't. Who says anorexia works? It's not working on me! Sigh. He looked pretty deflated by the end of my session, he didn't know what to tell me. Suggested I ask my Primary Care, which is how I got here in the first place.

I'm starting to get used to being passed around because nobody knows what to do, but it's pretty discouraging anyways.

My next appointment was at the Women's Health Clinic because of my panhypopituitarism I make no estrogen. Well, I don't make any hormones, estrogen is just one of them. All of my other ones I have prescription replacements (thyroid and cortisol), and I take DHEA as the female testosterone replacement but I can buy that over the counter. (You want to increase your sex drive ladies? Take one of those every day. HOLY.) I was given birth control pills and told that would be good enough, have a great day. But then I stared to get daily migraines (which is the norm for me and birth control) and I can't live like that. I'd rather risk heart disease and bone loss over daily migraines, so I stopped taking it and flat out said you can't make me.

Turns out though, estrogen is super important. As soon as you have a dip in estrogen, your bones start to deteriorate and you're at risk for fractures. (Which could be serious when I start exercising again.) A lot of things in your body need estrogen so you really can't just stop, and because I'm so young (35), it's really not a good idea for me to just go cold turkey with the estrogen, so I need a replacement. She agrees that birth control is not a good option for me because it's so up and down through the month, I need something steady- that leaves me with patches. Not birth control patch, but just the estrogen patch for the older gal.

It also turns out my vagina wants to be in a commercial because you know those commercials about dry, papery thin vaginas? THAT'S ME. Turns out my vagina is now Golden Girl status so not only do I need the patch, I need the cream, too. And it wouldn't hurt to have a moisturizer.

You guys, they make a vagina moisturizer. IT'S AN ACTUAL THING.

She was a little concerned about the breast cancer history in my family and wanted me to get tested for the BRCA gene. She would have taken my ovaries out that day if I let her, said there was no reason for those to have been kept. I tried to say that removal isn't always the best option and it's kind of an old school thought and she was having none of it. She was going to call in my prescriptions but was shuffling me over to the teaching nurse for "review". I had no idea what that meant but that's fine, I'll go there.

Yeah, it turns out I had to have a full on demonstration on how to apply cream to your vagina. I watched her do it and then I had to do it to this very creepy and very lifelike vagina model to demonstrate that indeed, I can do it by myself.

Cross that off on my life's bucket list, y'all. 

I left there feeling stupid, feeling frustrated, feeling like I don't ever want to go back. My entire drive home I thought about how I think I'm better off with my local team and only going to Mayo if something serious happens, or something gets significantly worse and I need another opinion. I saw someone from Mayo was calling me while I was driving, but since I don't use my phone when I drive, I ignored it.

I got home in time to go trick or treating with the kids. Matt was finishing getting them ready as I walked in, so I grabbed my mittens and went out with them.

The only picture I got and not everyone is looking. Don't let it fool you, Lucy cried almost the whole way and Penelope just wanted to eat everything as we went.

When we got home, I saw I had a message from Mayo, telling me I had to come in ASAP for labs before they could call in my estrogen patch. I returned their call and asked if I could just do the lab here and have them send it, because I'm not driving 3.5 hours one way for ONE LAB. That's insane. They said no, they don't like that.

So I told them to pound sand. I'm not doing it.

Fortunately, I see my primary care next week so I'm going to ask her. By then she'll have the notes from Mayo so she'll see their recommendations. So right now, I'm estrogen-less still but I have my cream! I haven't used it yet because I feel weird about it. To be honest I have to look it up online and read more information on it because that's the problem with Mayo- they bombard you with information and it's overwhelming, you feel pressured to agree with them and go blindly in. I don't normally second guess doctors but with medication, I do. I'm on so much of it that I'm nervous about adding more to my stack. So I've got a few days to get some questions written down to ask my doctor here what she thinks. She's pretty great and I trust her, so I'm going in hopeful.

Medical Update... not as cool as Weekend Update.

Lots of interesting things to talk about this week. I didn't realize how jam packed my September was going to be with medical stuff, but here we are.

I think it was last week when I told you about my last visit to the Mayo Clinic in Rochester, Minnesota. Scheduling my appointments there is kind of a nightmare because I live far enough away that I can't just drive there and back in a day and see doctors. I have to spend the night the night before my appointment, hope that my appointments don't go too long in the day so that I can drive back and be well rested. I generally don't drive much after 5 p.m. because by then I'm absolutely exhausted and running on fumes. I hang out at home so if I doze off it, not awful. If I doze off in the middle of rush hour traffic? Not so great. So though my next appointments were going to be in September, they had to be pushed out to October 31. I'm attending what I'm calling the "fat kid class" in the bariatric center and then I'm meeting a doctor in the Women's Care Clinic to explore my estrogen replacement options. Which sounds thrilling, right?

Well, when I spoke to the scheduler on the phone she told me there is a "short" questionnaire I would have to fill out and bring with me for them to scan into my file. Which, alright- that sounds fine.

And then it came in the mail. I didn't give it a lot of thought, just threw it on my desk and figured I've got some time, but then when I was waiting for something to download, I figured I would page through it.

Holy balls, lambs.

It's twelve pages asking me about my "perceived stress", sleep patterns, depression, and sexual function. The perceived stress things are hilarious because honestly, I feel like I should have two questionnaires, pre-AFE and post-AFE, because that would show how far I've fallen.

The sexual function section?! I'm not a prude by any means but JEE-SUS. We're just getting right into it, aren't we?! Needless to say I filled out all twelve pages and filed that into my Mayo folder. Sounds like that appointment is going to be a treat.

In therapy, I talked a lot about my recent visit to Mayo, my frustrations at being shuffled to one doctor to the next, and then I talked about my marriage. About how my support system isn't totally stellar and how I wonder if I'd be further along if it were better. It's literally the only hour in a biweekly span that I feel like someone gets it and validates my feelings. Helps me work through them. Then I come home and I just feel so.. discouraged and sad.

Sigh.

At my local endocrinology appointment, that was frustrating. Not only was I late (which is so not like me) but I almost wasn't seen because I couldn't remember my birth date. I had to explain about my memory issues and she didn't sound totally convinced but honestly, who comes to this appointment for fun in my place? Honestly, let's be real.

Then when he comes in, and I really like him a whole lot, he doesn't seem super interested in seeing me. He knows I see the endocrinologists at Mayo and it's like he's trying to shuffle me out of there? I don't know. I'd much rather stick with him and the point is for me to kind of phase out of Mayo unless I have some kind of major problem. But I'm explaining all of my issues and he's like, "Yeah, those aren't fun.." and then NO SOLUTION. I think the problem is everyone hopes "the next specialty clinic" can fix me so it's not really their issue anymore.

The really cool visit was with my psychiatrist, though. It doesn't sound like a thrilling thing but I got the results of my GeneSight testing, which is a test based on your DNA. It gives you the lists of drugs that might work, might not work, and gives you indicators why. This was my next option because I've been on a variety of different anti-depressants, in different classes, and nothing works.

Interestingly, remember when I was highly suicidal on the Cymbalta? And everyone was like, "Oh, that's mild and works for almost everyone!" Yes well, that's in my "significant gene-drug interaction" also known as my "big time no-no list". All of the other drugs I've taken (Celexa, Lexapro, Paxil, Zoloft, and Prozac) are in my "moderate" or "moderate no-no list".

Sure, that sounds bad and it is because it's all of the cheap stuff, but at least I feel validated. I don't feel like a whiner. It confirms serotonin based things aren't going to do it for me, which is what he (the psychiatrist) thought all along.

I am on Wellbutrin right now, but that's on my "big time no-no list" and while my suicidal thoughts are still there they aren't like they were with Cymbalta. So we're going to experiment and double my dose. Which means in the next two weeks we're going to know if I REALLY can't do it or nothing happens. The trick is that while this test is really cool, it doesn't factor in brain injury or trauma, so my DNA says one thing but my body processes drugs differently know. This can only be used to point us in a general direction.

The drugs that "should" work on me aren't great. Either they are new and fancy (Trintellix, Fetzima, etc), and EXPENSIVE, or they are "old and dirty" (Norpramin, Anafranil, etc) and have really awful side effects for not a lot of improvement. They basically aren't commonly used for a reason.

Here's what we also learned: my DNA really wants me to be a prescription drug addict. Pretty much every single drug on the market that is commonly abused and easy to get hooked on is what my DNA wants. Guess what it doesn't want, or at least shows up on the "big time no-no list"? Methodone and other drugs used to treat addictions.

HAHAHAHAHAHAHA.

Just kidding, because that's not funny. It's serious.

Also things I shouldn't be taking, ibuprofen (seriously), Propranolol (which is what I use for my migraines and blood pressure), and most mood stabilizers (sorry, Matt). Interestingly, drugs used to rev you up, get you going, give you more energy? I have no issues with those but we've tried three and they do nothing for me, even at the highest doses- an example of me processing stuff differently.

So overall, I'm a genetic mess (and they can even tell me that both parents gave me this crap shoot deck I'm working with). It's really a neat thing that science can do this now, and while it's disappointing in a lot of ways, I feel better knowing I'm closer to finding something that works. The journey to finding a depression medication that does something positive for you is harrowing and I can understand why people give up. I get it.

I have no appointments this week (yay!!) but teh following week I have therapy, I see my pulmonary doctor, and I see rheumatology. I'm nervous for that one.

Mayo, not just for sandwiches

I've had kind of a mixed bag with my experiences at the Mayo Clinic in Rochester, Minnesota. It's kind of THE place to go if you have something bizarre going on with you because these are the experts. These are the people who see the worst of the worst. On one hand, that's awesome because if there is something to find and fix, they will (presumably) be the ones capable of doing it. So though I know my diagnosis list are accurate (so far) I keep going hoping that my quality of life will improve. 

This visit I met with an entirely new doctor because the woman I had been seeing is no longer practicing at Mayo, and I'm OK with that. I don't feel like she really understood where I'm still struggling as far as my endocrine system goes. The new doctor was really lovely and the supervisory doctor was really nice, even if he spoke to me as if I was special needs or something. The doctor took a really thorough "why are you here" assessment, she sounded like she had read my file (the good, the bad, AND the ugly) and she had a handle of what I've done, and where I'm at. 

My biggest complaint is my fatigue- my level of exhaustion is laughable. When I tell you that I could nap on demand, I'm not joking. My night time sleep has greatly improved since my pulmonary doctor got me set up with a CPAP machine, I sleep like a rock at night, I don't flip and flop around, I am dead to the world. I still wake up feeling like I could sleep indefinitely. Some of that is because my pituitary gland is shot, so the hormone that gets you going during the day, Cortisol, is something I don't produce at all. Which is why I take my first dose of hydrocortisone first thing in the morning, to help me wake up. 

Except that it doesn't do anything. No matter how much I take. 

Secondly, part of my crisis plan for secondary adrenal insufficiency says that when I feel "ill/unwell", I need to take my emergency dose of hydrocortisone. It was explained to me that what they mean is the feeling you get when a normal person would think, "I should maybe call into work today". Which, OK- that's pretty severe in my case because I basically suffer through when sick. But the problem is that I feel that all of the time. Every day I essentially feel like I have the worst flu of my life. The only comparison I have is the time I had H1N1 flu years ago and I thought that I might actually be that person who dies from flu. That's how I feel, every day. My hair hurts. My skin hurts. I feel like I have a fever, but I don't. I feel like I have the worst body aches of my life. If I try to do exercise (a light walk, nothing crazy) it hurts worse and the next three days I'm bedridden, in full pain and hardly able to move. 

It's crazy. And awful. 

Well, the doctor was absolutely perplexed. My labwork confirmed that my pituitary gland is 100% dead. The last labs I had done, in May, showed such a tiny amount and they weren't sure if it was my gland trying to do something or residual of my medications. This time, I had no meds for 12 hours before labs and I limped to my labs, yawning the entire way. The labs themselves were dismal but at least it confirms I am not going to get better, if anything my symptoms might get worse. 

Secondly, my estrogen is gone as well and though birth control pills give me migraines, I need to take them regardless. I have bone deterioration already and despite all of the risks that taking birth control at age 35 and beyond, I don't have a choice and I need to take my chances because I can't have my bones falling apart at age 35. 

Third, I get to go to what I'm calling a fat kid class in the Bariatric Center. I have to do that before I can see a bariatric doctor, which I need to do because I desperately need to lose weight. Except I'm on steroids for life so that makes it tough to lose weight, but more importantly, I can't be exercising. I can go on light walks and a little water aerobics but that's about it because my body doesn't produce (dun, dun, dun) Cortisol! Guess what your body produces when you exercise? When you put any kind of stress on your body? Or when you're stressed out about life in general? 

Cortisol! 

So when life gets stressful, I actually will worry myself sick. Being stressed out will make me sick. 

I know, you're laughing, aren't you? It's OK, because I started laughing and quickly deteriorated into crying because I'm a mom of four kids, I'm deeply in debt, and I have no idea how we get by each month- MY LIFE IS STRESS. 

The other nice thing about Mayo? Is that you learn a lot. So I learned that Sheehan's Syndrome is different that being born into panhypopituitarism and adrenal insufficiency or having it gradually come on because in those cases your body slowly adjusts to the slowing flow of hormones and your symptoms slowly start popping up, signaling to you that hey- we've got a problem here. In the case of Sheehan's, it's brought on by a major post partum trauma, your body has hormones, next minute, nothing. There isn't that gradual slowing down of the hormone faucet, so to speak. You're instantly smacked into worst case scenario with your symptoms and it's hard. It's really hard on your body. 

Will I get better? 

Nope. 

I was officially told that as awful as this is, as awful as I feel, it's 100% guesswork with my medication and it won't make the worst of the symptoms go away, but I'll be alive. I'll feel awful every day, but hey- I'm alive. 

Honestly, it doesn't even feel like a perk, to be honest. Imagine living the rest of your life with the worst flu you've ever had, times 100. I can't even enjoy the things I used to do knowing full well I'm going to pay in pain for days. It's totally depressing. 

Mayo, round two - disappointment and emergency kits

So last week I went for my second trip to the Mayo Clinic in Rochester, Minnesota. This one I was a little more hopeful about since my last appointment went so well, but as it turns out, I should have gone into it with less optimism.

The plan this trip was going to be split up between brain testing, a visit with a nurse to show me how to inject my emergency medicine, neurology consult, and then a follow up with the endocrinologist.

I was a little worried about doing more brain testing because it's long, it's exhausting, and it's not what is wrong with me. But I went in, hoping that perhaps this new set of doctors could give me new information. The testing they did this time was nearly identical to what I had done in Duluth in January, with the exception of a few things. After my test I met with a neurologist who quickly glanced at my test results and basically asked what I was even doing there. I explained my story, my memory issues and how these might be considered normal for most people, they are so far from my normal and it's having a negative impact on my life. As it turns out, he realizes how rare AFE (amniotic fluid embolism) is but goes on to tell me that it doesn't really warrant studying so they just don't.

Mic drop.

Needless to say I left there feeling rather discouraged. I almost cancelled the rest of my appointments and went home, to be honest. I'm so tired of hearing from doctors that they don't know what to do for me, how to make things better.

Instead, I found a cafeteria. I got myself some lunch, with extra dessert, and I took my time eating it. I decided it would be stupid to cancel my appointment with the nurse considering I had no idea how to inject my emergency medicine into me. Sure, I suppose I could have figured it out in a pinch, but I'm here, I may as well find out how to do it correctly. As it turns out, it would turn out to be the most informative visit I've had since I had my AFE in August.

While my diagnosis hasn't changed, I've learned a LOT more about hypopituitarism and secondary adrenal insufficiency, specifically how serious they are when I get sick. A lot of the symptoms I have are also symptoms of both of those and even though I have mine under control with the help of medication, it doesn't mean those symptoms will go away, they just aren't harmful to me. So my feeling of constantly on the verge of getting the flu, complete with full body aches? Yeah, that's forever. YAY.

But I did learn that not only do I need to order my medical alert bracelet, but anytime I'm sick with fever and no vomiting and/or diarrhea, then I need to double or triple my dose of hydrocortisone for three days. If I'm vomiting and/or diarrhea, then I need to use my injection and go to the ER immediately to ensure I don't go into adrenal crisis. If I have surgery or have any kind of medical procedure (which is considered a trauma to your body), then I need to have additional Cortisol (hydrocortisone) in my IV and then double or triple my dose for three days when I come home. I also have to be especially careful on hot days or while exercising. No more super heavy exercising for me, which is really horrific because I have gained so much weight since having Lucy.

Which (laugh with me, folks) is because of the hydrocortisone!

On Friday I met with the neurologist who had a more complete view of my testing and my records. I came in pretty optimistic because he wanted to hear from me what my issues were before he looked at any of that.

Which, THANK YOU.

I talked about what I was like before I had Lucy, and what I'm like now. I talked about my brain blinks, chronic migraines, dizziness, memory blanks, trouble concentrating, not being able to understand simple instructions, being confused on how to do regular tasks I know I know how to do, etc. Then he tells me my tests show I'm normal.

Cue frustration.

I start telling him that sure, I can remember the lists of words within an hour, but ask me about that list at the end of the day? Can't remember. Ask me tomorrow and I won't remember most of this visit. Apparently memory loss after losing so much blood is normal and there is nothing they can really do for me. I'm not a candidate for cognitive rehabilitation and I may or may not get better. They don't really know.

All in all?

I learned that neurologists don't have great bedside manner. And that I just wasted my time on that entire department. I left there feeling pretty down I wasn't leaving with at least something other than "take notes for yourself". I'm certainly not wanting to add another medication (which the neurologist insinuated) because I'm up to my eyeballs in prescription medication costs. He also made it sound like I actually want to be sick and maybe if I just stopped being depressed I would feel better.

Because certainly, if I could stop myself from being depressed just like that, not only would I do that, but I would sell it and cure others while becoming ridiculously wealthy at the same time.

Overall I'd say the only worthwhile part of my visit to the Mayo was the nurse visit. She gave me so much information, things I'm experiencing make SO much more sense now, so at least I have that. I learned that when I'm tired, I'm tired for a reason and I might not be able to fix it. I might actually just have to take a nap. I learned that as I get older, maintaining "normal" is going to get trickier since all of my medications will need to be adjusted so I can maintain at a level close to what I would be with a perfectly functioning pituitary gland. But I left there not taking that weird, blueberry sized gland for granted. Who knew something so tiny could wreck havoc on your body?!

Endocrinologists are a little bit nerdy.

One thing about my Endocrinologist locally is that he is VERY knowledgeable about my current health situation and he really loves "fun facts" about the pituitary gland. I have all of the faith in the world in him and he seems to enjoy lab work and knowing what's going on in my body. He's not messing around and he's given me great information.

So while there's all that, it kind of feels like I'm cheating on him when I'm seeing Endocrinologists at the Mayo Clinic in Rochester, Minnesota. I'm fairly confident he's going to love having additional information to pour over so my March appointment with him maybe won't be terribly awkward.

But last week my mom drove me to Rochester so I could see doctors at the Mayo Clinic. I basically let everyone talk me into getting a second opinion and it dawned on me while I sat in the waiting room that I had no idea why I was actually there. I don't feel as if my doctors have missed anything in my diagnosis or prognosis, and I don't feel as if any mistakes have been made. Fortunately, the things I have been diagnosed with are pretty straight forward and you can't really misdiagnose them. You either lost a lot of blood during birth or you didn't. My visit was with a doctor and a visiting doctor from Singapore. Both were very nice but I did get the impression that they weren't totally sure why I was there either.

But here is what I was diagnosed with by them (which is basically the same as here, except for the last item):

1. Panhypopituitarism due to Sheehan syndrome
2. Neurocognitive problems
3. Secondary amenorrhea
4. Secondary adrenal insufficiency
5. Secondary hypothyroidism 
6. Secondary hypogonadism

I've included the Mayo Clinic links for those items in case you're nerdy and want to learn more about each. I haven't had time to read up on all of it yet but I will. The only one that is new to me is the last one, which is a fancy way of saying I'm not producing enough estrogen, and that's put me into pre-menopause. I'm also not producing enough testosterone (yes, women produce that, too) so somewhere down the line I might decide to supplement that but it's not imperative.

What is imperative is that I get myself a Medical Alert ID bracelet and have it engraved with "hypopituitarism- give Cortisol". Apparently, should something happen to me and I'm unconscious or not able to communicate my health situation, a first-responder would need to know this because without it, I could very well die. In addition, let's say I get sick and I'm at risk of dehydration because I'm vomiting or I have diarrhea, I have to have Cortisol injections on hand and know how to inject myself because it's the same situation. I could go from OK to very, very sick (adrenal crisis) rather quickly because my pituitary gland is basically useless. The only way to treat Sheehan's Syndrome (hypopituitarism) is lifelong hormone replacement.

Because my pituitary gland doesn't work, it also means I am not producing ACTH hormone. You have no idea what that is, but it's basically what makes your adrenal glands do their thing such as helping my body handle stress, immune system, my heart, etc. That's kind of a big deal. Everything else in that list is also a result of my pituitary being useless.

I left there with more medications (yay) and appointments to come back to see the endocrinologists but also to see a PGA nurse to learn how to inject my Cortisol should I need to and also... see the neurologists.

I know. I know I said I wasn't going to do brain testing again if I could help it but as it turns out, they don't want to see what the doctors here did, they want their own data. Which I guess I understand and they are the best of the best, so who am I to question them? So I am driving down Wednesday night so I can do brain testing at 7:45 a.m. Isn't that disgusting? I can't imagine I'll do well that early in the day. Frankly, I can barely make Lucy's bottle at 8:30 and I have been up for an hour usually by then. So we'll see. Then I meet with the neurology team on Friday to go over my test results and see the endocrinologist again. Then I'll drive home and hopefully get here at a decent time to go to bed early. It's such a long drive but I'll be OK. I really want to go on my own to prove that I can. The bright side is I hope I get to meet my friend Amy for dinner one of the nights- I haven't seen her since mid-pregnancy with Lucy. It's been forever. Maybe I'll even bring my laptop. We'll see. But I sure hope these neurologists have a little more information for me but again, I'm going in with low expectations. Just in case.