Wednesday, August 30, 2017

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? 


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? 


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. 

1 comment:

Julie H said...

God it all just sucks.