It's really becoming little, stupid things that I'm clinging onto at this point. Things like crossing a doctor off my schedule. It's very exciting.
A couple of weeks ago I mentioned I was all done with the neurologist, and that's frustrating. Don't get me wrong, I love saying I'm down to six doctors in my rotation, but at the same time.... I'm no better. Neurologically there isn't anything they can do to help me. My memory and cognitive ability will either get better over time... or it won't. They don't know but we all hope for the best. That is pretty frustrating and defeating because I'm still getting confused if I'm in a store, or basically a place where lots of people are. I get disoriented, confused, will get lost, and it's scary. I cannot fully explain how scary it is to all of sudden have no idea where you are, why, if you brought your children, how to get home, etc. I wouldn't wish that kind of fear on anyone, so to be told there isn't anything they can do? Well that's a bummer.
Today's post though is to talk about me being down another doctor, the pulmonary doctor, or the guy who has been monitoring my lungs and my sleep. I started going to him this spring because my level of exhaustion is basically ridiculous. I know everyone says, "Oh man, I've never NOT been tired, hahahaha!!" and I get it, I would have said that to someone in my shoes a year ago.
I'm telling you, you have never in your life been tired like this.
The bummer about panhypopituitarism is that my body produces no hormones, which I've talked about a LOT. I keep banging that drum because people genuinely don't understand what that actually means. The most important one I'm without is cortisol, and it's the one that gets you going in the morning. When you catch a second wind during the day? Thank your pituitary gland for pumping our cortisol. You know when you get so stressed out, or go through a physical stressor and you almost feel like your body braces itself? Yes, that's your pituitary gland helping you out. I've got none of that. So I never feel awake, just from that alone.
Add to that, I will go about my day and I feel like a toy with half dead batteries. You know how something just drains of power until it's dead? That's how I feel EVERY DAY. By dinner time I'm so close to passing out that I often do. As soon as I sit down, I'm out. I physically cannot just power through it. The worst is when I get that feeling around lunch time because I worry about falling asleep and not being able to hear Penelope and Lucy get up from naps.
So the point is that I went to the pulmonary doctor to see if maybe my quality of sleep is so awful at night and that being the cause. I got a CPAP machine and have used it for almost 3 months now and so my appointment yesterday was to review my progress. Am I using it correctly? Is it working?
Good news, I'm using it 100% correctly and it's working! I went from 10-12 events per hour (episodes where I would stop breathing in my sleep) to 1-2 per hour on average. That's pretty great. Matt says that when I put my mask on, I'm OUT for the night and not a damn thing wakes me. I hardly roll over or anything. I get at least eight hours of sleep every night, sometimes upwards of ten (when I go to bed early because I just can't go any longer) so in that regard, I should be super awake!
I'm not.
While that is really frustrating, it's also kind of great because it means we've ruled out one more thing that it could be. I have lots of other things to rule out, and that's a bummer, but this is one less thing. My quality of sleep is so much better and I will never not have my CPAP. I'm not kidding, you don't know blissful sleep until you have used one regularly. It's worth every penny.
So I'm all done there, and I go back in like five years to get the new machine but other than that, I'm DONE!
Tomorrow I see a rheumatologist to look at the possibility of an auto immune disease. Which, that sounds depressing but I'm really going in so hopeful. I don't want a disease, OBVIOUSLY, but I really want a thing to point to and say, THIS is why I feel so awful all of the time.
Where there is a problem, there is a SOLUTION! Right? That's what I'm hoping, at least.
I'm sure tomorrow will be just getting to know you/basic information/labs, etc and I won't walk out of there with the golden ticket, but I'm still nervous and kind of excited. I just really want to know why I've been hit by a bus every day. It's really like having the worst flu of your life- that's how I feel every day. I refuse to believe that's normal.
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