A positive post: Even more improvements!

I’ve set some goals for myself:

  1. Brush teeth standing up.
  2. Get out of wheelchair.
  3. Cook for myself.
  4. DRIVE again.
  5. Be able to sit up straight, before I get back problems.

I’ve even already made progess with a few of them. The other day I was able to stand while brushing my teeth, and I’ve been doing it ever since. =) And I’ve been out of my wheelchair most of the time. Yesterday, I even danced! My POTS symptoms, as I mentioned in last post, are much improved but it just depends upon the time of day. I’m trying at various intervals to sit up straight, but I can’t push it too much. I only just now became able to sit up on my own at all; I mustn’t go too far! I now eat twice a day, every day, with lots of healthy snacks in between, and haven’t needed to supplement with Ensure as much. I don’t have as much digestion-related dysautonomia, so I don’t have to split up my meals like I have been for the past two months. It’s such a relief. Since my hospitalization, I was subsconsiously on edge because I never knew what would trigger that domino-effect of terrible symptoms, but I finally feel stable again.

I’m still seeing things. I get headaches every evening around 4-5 o’clock, which has been my pattern since starting the the Rifampin in January. After the Zithro in the late evening (around 6pm), they get worse. Last night my neck was very stiff; it was difficult to even turn my head to the side. I need ibuprofen almost daily at around the 4-5pm interval, as well. The lymph nodes in my throat begin to ache and I feel generally inflamed. I’m lucky that after a decade of taking it, I can still tolerate the ibuprofen, which I attribute to always, ALWAYS taking it with food, or a full glass of milk to coat the stomach. (The aloe vera gel I’ve taken every day for the past seven years probably doesn’t hurt, either.)

Probably the most amazing news I have, is that my 2nd Lyme flare cycle–which I’m near positive began after taking grapefruit seed extract (GFSE) in July of 2010–is, from what I can tell, vanishing. GFSE is known to be a cyst-buster, so my best assumption is that.. it actually did, and the result was another set of replicating Lyme bacteria? This 2nd flare cycle was always milder than my “main” flare cycle (which occurs roughly around the 16-20th), but still encompassed the same type of symptoms: Left sided problems, spine pain, cardiac arrhythmias, severe headaches, and higher fever.

I made a brief mention of this last month, while I was wearing the holter monitor and expecting it to pick up on the arrhythmias that would be happening near the beginning of April… Only to find out, nothing happened at the beginning of April! And this month is the same. I’ve not had any fever, nor severe headache, nor explosion of arrhythmia, nor spine problems. There was the neck pain from last night that I mentioned, and I had one episode of spontaneous arrhythmia yesterday, but this is nothing compared to what “should” be happening. This must mean something very good. =)

Also, I don’t think I ever got to mention my cardiologist appointment on the seventh. He basically said there was nothing there but a fast heartbeat…which is ludicrous, because 90% of the time when I had to press the alert button, I was lying down with a normal heart pace. :\ Unfortunately my appt was early in the morning and I wasn’t able to probe deeper and dispute his “it’s just fast” theory. Doctors are trained to not worry the patient unecessarily, so my best guess is, since he kept repeating “it’s nothing dangerous,” is that whatever was there, he doesn’t think is enough to cause concern. Because of this vanishing 2nd flare cycle, I never did get to record the main, most-troubling arrhytmias that I was having… Which is bittersweet, right? I’m glad that they’re gone, but I wish they had happened while something some recording!!!

I think I’ll end this entry with a new ability scale checkpoint. :) As of right now I think myself to be at.. 20% physical, 35% cognitive, and 28% symptom severity. I had went downwards since my last checkpoint, but I’m back up again, so my physical ability is about the same, I’m slighlty better cognitively, and much better (compared a 7%, at least) with symptom severity.

My mother and I are planning a trip to Walmart for tomorrow. Two sickly women with illnesses that contradict each other, plotting how to attack a supermarket. It should be interesting! I need to find the right time of day to approach so that I won’t need to wait 20 minutes for a mobile scooter to become available! This will be the first time I’ve left the house since that April doctor visit. I can’t wait.

a rainbow at night

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