I guess it’s been awhile since I’ve written a real post. Since it’s Endometriosis Awareness Month, I’ve been trying to reblog my better endo-related posts to raise awareness at a time when it’s most important. You can check out my new endo-specific page here, with information, expanding resources, and links to my blog posts. It’s pretty and has that new-page smell! ??
I guess, when it comes down to it, I’ve been using this month to hide. From myself, from the world. Some good things and some not-so-good things have happened, which you would know if you read any of my weekly Monday “Share Your World” posts. (But the vast majority of people who read those are people who don’t actually know me, so what do the finer details of my life matter to them?)
I’m on this merry-go-round that happens to be a roller coaster at the same time. And I really want to get off it so I can puke (no, really, I am actually uncomfortably nauseous right now, but it’s become a constant part of my life, too, so whatever.) Or at least purge…something.
A week ago I caught some sort of bug that I think may have either been a mild case of the flu (mild because I got my flu vaccine/shot/jab ? this year, of course) or some other virus. Since I hadn’t been out of the house in a week (and it was to the hospital for two appointments on opposite sides of campus, so I passed a LOT of potentially sick people), I blame David. Even though he showed no signs of illness, he has the world’s most powerful immune system; in the 12 1/2 years we’ve known each other, he’s never once gotten sick. So he probably brought it home somehow, since the flu is currently rampaging through the area. Even though it was only mild, I felt like trash. Take my normal trashiness and add vomiting (once) and a low-grade fever (maxed out at 99.5 *F, or 37.5 *C for the rest of you) and I felt positively horrendous. ? ?You may laugh about the temperature, but my normal body temp is about a degree below normal, so when it gets up to normal, I feel it. I was worried when the thermometer read 98.6*F. Sure enough, it kept climbing. At least it only lasted three days.
This past week was decent. I had a huge accomplishment on Wednesday. I drove myself to my doctor’s appointment with my PCP, Dr. P! First time I’ve driven in three months, and it was 98% highway. The only way I was able to do this is because I rested for three days beforehand. Plus, I woke up feeling well (which never happens) and since the appointment was at a family health center and not the hospital, it was much easier since I didn’t need to deal with the wheelchair. I also brought along my hydration pack (several bottles of Gatorade, a bottle of water, and a stick of Nuun tablets). We had a back-up plan in place; a family friend was going to take me once he finished class, but I told him I was ok. (He doubled checked with David and his own wife just to be sure…he can’t help it, it’s the nurse in him, bless him.) I’m grateful to have people like that in my life. ? The appointment went well; I really didn’t have anything to say (stupid brain fog, I forgot to tell her about the brain fog!) But I’ll see her again in June, since we’re having appointments every three months to make sure we have all my issues figured out, since she’s my quarterback.
Yesterday I finally crashed and today I crashed worse. So two good days in a row were awesome! Thursday was David’s birthday! ? I like to tease him about being old now, but he throws it right back at me because I’m five months older than him! Our age right now is completely useless. I still get carded when the UPS driver delivers wine. ? ??
But really, at its most routine and basic level…life remains unchanged. Each day is still a delicate balance between salt intake and hydration that it takes literally all day to get right. I nearly blacked out while getting the mail today. Luckily I crashed through my front door just as I was about to hit the porch; I had just enough control left to get inside and suck wind in the foyer for a bit, surrounded by concerned felines.
As to how my life has been going, I think these two graphics from the Dysautonomia Advocacy Foundation sum it up well.
This is real, folks. This is what my life is like. A common measure of quality of life in congestive heart failure patients is their ability to walk to and from their mailbox (assuming it’s at the end of the driveway.) I can manage on good days, but today was a clear example that not all days are good. Many are bad, like today. The more bad days I have, the more my mind starts to wander in the direction that this is permanent. I see my cardiologist, Dr. J in two weeks to discuss adding Florinef, which I’ve heard mixed opinions about. It seems in the best circumstances, it works for awhile, and then suddenly stops working. In the worst circumstances, it can’t be tolerated or has to be stopped because of hypokalemia (low potassium), which I’m already prone to. And then…who knows? There really aren’t that many drug options because none have been approved to treat POTS.
I should shut up. I don’t know what this rambling piece of poo is. My apologies. I should go back to reading instead…that’s my escape now. I just read three books in one week…