Monday, July 10, 2017

We're back! But first.. Matt gets to sleep with Darth Vader.

I know I promised you pictures and stories of our trip to Florida and those are coming! I'm still sorting through them and I want to get the ones from Matt's phone because he actually took some, you guys! I know, and he took some candids of me and though I look terrible, I'm going to share them because that's where I'm at in life.

I look terrible, but I'm living life anyways.

But before I do that I want to give you an update because someone asked me the other day how my sleep study went, and I didn't have any information because I didn't have a follow up yet. Well, that follow up appointment happened today so I have stuff to share so let's chat before I forget about it because if I don't get this information down somewhere, it's gone. It's literally gone and here is as good a place as anywhere.

So way back on my anniversary (June 12) I had my first ever sleep study done. It's no secret that I am exhausted all of the time. And when I say exhausted, I am not kidding.

And yes, this is when everyone then says, "Oh I here you, I'm SOOOO tired too! Ugh!" and I roll my eyes and want to punch you in the face. Sorry, not sorry. I know I sound like a broken record when I go on and on about my stupid pituitary gland, but the super fun thing about having panhypopituitarism is that nothing works. I have no cortisol and that's a big deal. Normal people still feel groggy when they wake up but eventually you get going in the morning because your pituitary gland is like, "Oh hey, it's morning! Lemme help you out there, buddy!" and gives you a boost of cortisol and that's what gets your entire body moving. You get a couple of these boosts a day, it's like when you get a second wind- it's your body giving you little shots of cortisol. I will never have that. The only thing I have is the steroid I take, which is what keeps me alive, and it's not nearly as good as the real thing because I am DRAGGING.

Which brings me to the sleep study. The whole point was to figure out if my excessive fatigue is because of my adrenal insufficiency and panhypopituitarism or if I also have sleep apnea on top of it making me even more tired.

The night of the the sleep study was kind of awful because it took them a really long time to get me hooked up to everything correctly. Most everything went on OK except for the things that go in your hair. My hair is very thick and wavy so they couldn't get the correct readings and it took almost two hours of tinkering and moving things around before they could let me go to sleep. Needless to say, by midnight (when I was allowed to finally fall asleep) I was dead tired. So tired, in fact, that I didn't roll over at all in my sleep. Not once in seven hours, which I can tell you right now is not normal for me. I left there absolutely exhausted. The whole day I was tired.

Today I learned that while I didn't register on their computer enough to wake me during the night to try the CPAP machine during the test, I probably should have one at home to try for the next ten weeks. I have mild sleep apnea, but the fact that I am so excessively tired despite taking my medications and taking a daytime stimulant already (which hasn't helped me, even at an increased dose, in fact I haven't noticed any difference at all), he's recommending that I get the machine and try it. So that's what I'm going to do. At this point I'm so desperate for some solid sleep I'll try anything. I can't even tell you when the last time I woke up in the morning feeling like I could actually take on the day. Well over a year. Possibly two. It's been so long.

So that's how my appointment went. Wednesday I go to Neurology for an EMG and I am very nervous about it. I made the critical mistake of looking it up online and pretty much everything I have read tells me this is a painful procedure so yay! I can hardly wait. But I have had the tingly and numbness in my arms and hands, but also my feet and we have to figure out if it's medication related or if it is a form of neuropathy. I have reduced the dosage of the medication that we think may be the problem and that has been absolutely awful (more on that later) and I still have the sensations, not nearly as bad but it's still there. So I don't know. Part of me wants to just cancel the procedure and say it's the medication, crisis diverted but then I think, what if? What if it really isn't and I'll just need the test anyways? I may as well get it done now while my deductible is met because god knows what's going to happen next year with health insurance, right? I don't know.

What I do know is that I am 100% sick and tired of feeling like a lab rat, like nobody knows what's wrong with me. I am tired of feeling like absolute crud. Everything on my hurts, all of the time, I feel like death is warming over and it's tiresome. To be told this is the best it's going to get is really awful and I can't imagine this being any kind of quality of life, to be honest.


middlechild said...

I have a CPAP and used it faithfully. I call it my miracle machine. My late husband said it was like sleeping with Darth Vader.

Shooting Stars Mag said...

Both my dad and brother sleep with a machine. It's not so bad, but I know it's just one more thing you have to deal with and I'm sorry. I hope your test Wednesday goes okay and they figure out how to help you. I hate not knowing what's going on with me, or not having a means to actually fix it. That's the worst.

I hope you had a nice trip though!!