This is LONG overdue.
Sorry to all my “loyal readers” (for now also known as: Ashlee, who I already talked to). I’m sure I could make friends with whoever else may be reading this, or I may already be friends with you. But for now she’s the only person I know of that keeps up with this little writing adventure of mine.
I didn’t even realize until tonight that I never posted anything last Monday, and I don’t really know why I didn’t. I guess I was just too exhausted and nervous about Cleveland the next morning? Monday WAS a decently long day for me – I had to go run errands (read: drive to three different hospitals to sign medical release forms, get discs, have records sent). I was also coerced (okay, not really) into stopping at Sears to pick up a cute dress for a little girl for her birthday.
By the time I got home I guess I was just a little drained. I know I wound up not eating dinner until almost 10 when I was starting to feel sick from not doing so. OOPS. I also just remembered what I was doing that night when I was on my computer but semi-exhausted: I was talking to friends! Mainly I was discussing random things pertaining to life but also about how I was a little worried about my appointment at the Cleveland Clinic. The conversation that was a real life conversation (and not just shooting a message that would be replied to later) was with a friend who understands health difficulties and we discussed accommodations, I explained what a 504 was, etc.
I also e-mailed a friend of mine who is overseas right now. I miss him. He’s really silly, from Jersey (so it’s easy to make fun of him and he’s good-natured about it), and vaguely resembles Vin Diesel. We shared a lab table in a physics class about two years ago and it was fantastic. I miss him – and that was just because he graduated. Him being overseas had me worried at first but he claims that everything is fine and he’s just bored out of his mind. I’m considering seeing if there’s anything they need and getting help getting a care package together for his unit and sending it to him.
Now that I have those rambles out: Cleveland.
My stepdad told me to put a specific street into the GPS, but didn’t tell me the cross-street. That turned the drive into a slight debaucle. I’m pretty sure we circled unnecessarily for a while before I figured that out and reset the destination in my phone. We got there about an hour early, but we went straight to my appointment instead of adventuring at all. (I’m not going to lie – I was disappointed. I was hoping we could grab lunch while we were out there, somewhere exclusive to Cleveland. But whatever.)
I got up to go to the restroom at one point because I knew we still had a long time until my appointment time, and when I came out my stepdad was like, “She said your name.” And I just looked over and said, “Bullshit. I don’t believe you – you’re just giving me a hard time.” Well, for once he wasn’t just heckling me. She really had said my name because she walked back through and went, “You can come back now.”
The first thing we did was go over medicines and such while I was laying down, then we did what I’ve heard referred to as “a poor man’s tilt test.” She took my blood pressure laying down, sitting, and standing. When she first tried to take it while I was standing the machine didn’t work. Seriously. I just laughed it off and went, “Yeah, that happens with my wrist monitor sometimes too. Sorry…” We tried it again and I was up to about 122 after having been in the 80s laying down.
Afterward I just sat there waiting for my new doctor to come in, and she brought a nurse practitioner in with her. We talked. A lot. She asked me about symptoms, how long things had been going on, what I measure at when I check at home, etc. And then she did some examining and then we had the, “So this is what you need to do,” talk. The sad part is that for now my treatment is following the same path: EAT SALT (I finally have a number, though, and it’s a ridiculous amount of salt: 7 grams); drink two liters of water a day; keep your medicines for now.
Things that were handled differently, however: “You’re a dancer? KEEP DANCING – for both your mental and physical health.” It made me so happy because I’ve been nervous about how I’m “breaking the rules,” because I was told to avoid strenuous activity before. I was pretty psyched that she told me it’s okay to keep dancing and actually encouraged it. I also didn’t have to deal with a lot of the drama other patients have about how they’re just deconditioned and that’s what caused everything to go wrong.
She also recommended that I elevate the head of my bed (and pillows don’t count). Here’s the catch: I sleep on an air mattress. I really don’t know how you’re supposed to safely elevate one. As a result, my bed has yet to be elevated. She also gave me a gauge for my compression hose: 30-40; she wants them full length (including control top). I’m going to have to figure some fashion changes out because if my medical issues are forcing me to become feminine (read: wearing a PINK watch because it’s cheaper) then I may as well rock the newly attained feminine habits such as wearing hose all the time.
She also asked me to get autonomic testing done, but the autonomic lab didn’t have any availabilities until over a month after my appointment with her. As a result, I’m headed back out to Cleveland in September for testing with her, then I have my appointment with the cardiology department in October. In the mean time, I’m having my PCP do some blood draws for her (I have the list somewhere but do you really want that much detail? If so I can send it to you, but I think you’re fine for now.). I’m also trying to get my digestive stuff put back together. She asked that I drink an entire bottle of water first thing in the morning before even getting out of bed. Here’s the catch: Even the sips of water that I have to take to take medicine in the morning make me feel like puking a lot of the time. I don’t know what it is – it’s like you splash the water in and my stomach just goes, “HEY HEY YOU YOU I DON’T LIKE YOUR WATER.” It’s miserable, and that makes it hard to eat too – mainly because I’m never hungry so I don’t stop to think to eat. When I told her about this she recommended that I ask my GI to check for gastropareisis. So far I haven’t been in touch with my GI, I just got my PCP to put me back on a reflux medication. She said I should be feeling better in 3-5 days, though, and I’m still having issues with feeling full all the time and having definite signs of my reflux. I’m not sure if that means I should be on a higher dose, or if I really am having some other issues that need to be handled (and that will lead to the reflux going away). I might cave and call over to my GI and try again to get an appointment. It would be nice if they could actually give me an appointment this time and figure things out (preferably without another endoscopy – I hate those things).
The day after my appointment my stepdad pretty much made me cry – I guess he heard the part about salt, fluids, and exercise, but missed the memo about how I need to avoid stress. He was in my face about food and water, and I swear he wants me to follow like a 3000 calorie diet with everything he was telling me I have to eat daily. And he’s blackmailing me about it by saying that if I don’t do as he says he’s going to tell my doctor that I’m not trying and she shouldn’t even bother. Apparently my 3-mile+ ventures a few times a week and dancing aren’t good enough for him either. Instead I’m supposed to get up and walk around the block twice. I really don’t get it, honestly. She admitted I’m not deconditioned so his attempting “to condition me” seems silly. I have trouble STANDING, not walking. Or at least, I don’t have as much trouble walking. I just have to take breaks sometimes and stairs are terrible.
As a result of his behavior I’ve been trying to eat as much as I can handle lately – it’s not the best for me, but at least he can’t claim I’m not trying. I’ve started keeping track of my diet using myfitnesspal again, and I am NOT getting enough sodium through dietary means. I’m trying ridiculously hard, but it’s just not good enough I guess. I hate to say it, but I may start taking the salt pills again and see what effect they have this time around.
The past week or so I’ve just been feeling absolutely drained. I think it’s the brain fog, although I’ve been napping a lot too so maybe I really am tired. And that’s why you haven’t been getting daily posts. Hopefully this week I have a little more energy and can start posting more often and keep up with life. There are a few things I have on my mind to post about, I think.. I guess you’ll just have to wait and see whether or not I post them.
For now, I’m going to try to figure out how to continue to ignore the annoying country music that my mother is forcing me to watch even though SHE’S BEEN SLEEPING ON THE COUCH. When she woke up I told her that she had been snoring and I would appreciate being allowed to watch something else that she needed to go to bed. It didn’t go over well, unfortunately. She insists that she’s awake and wants to watch yet another hour of this. I’ve already been in one of my own personal hells for two hours so I’m dying here.