Let’s see. Significant health-related things that have happened the past few days…
My primary physician said I could have whatever mobility aid I needed, to just go to the medical supply store and pick something out. Wow! The only problem was, what would benefit me the most–a transport wheelchair–is NOT covered by my insurance because they’re not a self-propelled item. Which doesn’t make much sense to me, really. If I’m too sick to push it myself, you’d think that be a major part of why they WOULD cover it?
There was some minor debate between my family and I about why I didn’t want an electric wheelchair, which, for clarification, is usually what you see children with muscular dystrophy cruising around in, since their disease also means they cannot use their muscles to propel a manual wheelchair. First off, I didn’t want it because it’s too large, too heavy, wouldn’t fit in my car, and would take up a lot of space in my room. But most importantly, it costs $2,000 (making my part about $400), and would signify the need for something more.. permanent, than a transport wheelchair.
I realize that this is a major step, one that could potentially signify my inability to return to a pre-wheelchair bound state if my medical team cannot find a way to stabilize me. But I don’t think that justifies having my insurance pay for an electric wheelchair or scooter, when there’s still a chance I may not need it for more then the next several months. I’m not hopeless yet, you know? There’s still a chance that we can get this under control, that I can resume antibiotic therapy, and as a result won’t be quite so sick. If I progress further and need an electric wheelchair or scooter, then fine, but let me give this a try, first!
In the store, they had the one I was going to buy online set out, so I got to try it out for size and usefulness. It turns on a dime–wonderful for the small size of my house–and I can propel it about with my legs as long as I don’t go too far. (Trust me, the irony of this is not lost on me.)
So I came home and purchased it.
Remember that random bump on my lip? The one for which I took around 1200% Vitamin C? The candidiasis has improved since I decided to continue it. I can brush my tongue normally in the morning, without needing the Nystatin. My digestion is more normal, also without taking Nystatin. And things are becoming more normal in the lower regions, as well. I don’t think it’s any coincidence, and high dose Vitamin C is a good regimen for just about everything I have going on… That random bump that caused me to take so much of it, could have been a blessing in disguise. I’m about about 1.5 grams daiy right now, and I do plan to continue it and see what happens.
Normally I’d be really happy about this, and in general I am, but… Again, it helped, so when my doctor had to get a culture sample from me, to confirm the presence of the candida yeasts… Well, now I’m concerned that because things were better, it might not show up! Ha! How’s that for irony. Either way, I can’t resume antibiotics until the results are back, roughly about 6 weeks from now. :( But because I won’t be doing any more tests or things, what I CAN resume, are my herbals! So with much, much glee, I have added back my olive leaf extract, oregano oil (only for five days), and houttuynia! The latter is for the treatment of bartonellosis, so I’m a little nervous about that herxing. I don’t think any of these treat Lyme, but after five days with the oregano oil I can switch to grapefruit seed extract. Lyme replicates roughly every four weeks (seemingly two weeks for me lately?), but bartonella replicates every five days, so it’s actually the bartonella that has me worsening so quickly. (I don’t know if replicate is the right word to use, but that’s when it floods your bloodstream and travels about.) That’s not including any possible babesiosis, which I pray I don’t have, but it has a replication of 4-6 days as well. These coinfections are the real trouble, if you ask me.
Hmm… Another migraine on Friday, just for the record. I’ve also started to get more frequent headaches, mostly in the front of my skull. I went a few weeks without needing pain meds every other day, so I wonder what randomly made them start happening again? But as far as other typical-bart symptoms are concerned, my shins have been hurting for two weeks, and I now experience foot pain every other day. And yesterday when I woke up, my temperature was ALREADY 99 degrees; it later went back down in the doctor’s office, to 98.5 degrees. Today my temperature was a brief 99.5 but I’m not sure of its significance, because I didn’t get my rising temp and this is right before my menses, so that’s typical. The dystonia has NOT been severe in a while, but with the addition of my herbs I expect it to flare up a bit: We shall see.
As for me mentally: I. have. no. sense. of. time. But it’s not like my usual timelessness, where things seem unusually fast, or I blank out, or like before, where I forget entire days. Lately it’s been–and I’ve been doing this over and over and over for the past week–that things seem to take a disproportionately long amount of time. Watching my mother cook potatoes seemed like forty minutes, when it was only ten. The one-hour drive to one of my doctors felt like it was longer than the five hour drive to my LLMD. And a bunch of other things where my family has had to tell me, “No, you’re just doing ‘that thing’ again.” Everything feels like it takes forever, and I’m not sure why this is. That’s all I can really say about it. (In hindsight, this was probably related to the migraine pre/postdrome).
The worst moment of this three-day venture from Wednesday to Friday (so many doctors!), happened on Thursday evening. The 24-hour delayed symptom flare from Wednesday evening was beginning, made all the worse by Thursday’s twelve-vial bloodloss. I wandered to my mother’s room and collapsed in her bed, as I am wont to do when I don’t want to be alone because of feeling particularly awful. I haven’t had an episode of my breathing muscles being affected by the weakness in a long time, but it happened that night. Specifics aside, this ultimately resulted in cyanosis of my extremities (please note that I do not have Raynaud’s syndrome). Being mostly unable to move, enduring shallow breathing and inadequate blood flow, she massaged my hands and feet until I returned to a natural, oxygenated pink. Why I said “no” to her fetching my oxygen machine is beyond me, because I really could have used it: The fact that M.E. sometimes affects the muscles in my chest is one of the reasons I have it! Nonetheless, I continued to make a slow recovery with rest and help. What struck me was when she brought up my sister, whom I talked about last post. She mentioned being glad that my dad wasn’t around to see her rubbing my hands and feet, because that’s what he had to do for her every night “close to the end” due to her inadequate blood flow. I laughed nervously to hide my discomfort.
♥ a rainbow at night