After the Hospital: Where We’re At Now

I’m having a random moment of lucidity, so I figured I’d try to type this entry. In general I’m still not “recovered” from everything that’s happened. I feel very.. I think fragile is a good word for it. Still not back to my pre-hospitalization level of functioning, but not a phone call away from going back, either. Everything’s up in the air with this weekend being my next bartonella flare, but so far so good. And like someone on the Under Our Skin documentary said, it’s good to try and keep it in mind that these things will be temporary. I’ll get most of these abilities back, if I just keep fighting… I’ve been through this hell before… Just not quite at this level. But we’re all the wiser for it.

Probably the best news of all is that, since I decided to take my antibiotics this weekend so I wouldn’t encounter the bart flare unprotected, I’ve.. well, started back my antibiotics! This weekend I’m on 200mg of Doxy, but for the long term I may have to cut that in half, at least for right now. I’m not sure what my LLMD will want me to do (I speak to him Wedneday), but I’ll be on SOMETHING, and that counts. I’m unsure of my bloodwork, which means I don’t know how my liver is handling this, but we’ll be getting that checked on Tuesday. If things are still not functioning best, I may have to stop again and take a longer break… I’m trying not to think about it, and just focus on happy thoughts. I’m also not back on my herbs yet, but those will be added as soon as possible. My brain really misses the olive leaf extract.

A lot of my friends have been asking me what will happen if I’m not on my medicine… Well, I’ve been saying it online and saying it to people in person for a while now, that if I don’t take it, I.. well, unless a miracle strikes, I won’t survive. This recent hospitalization, and finding out the test results, have brought this fact home to all of us. I’ll develop an MS-like illness (which I’ve already done), acquire further heart problems (which I’ve already done), and die. Having Primary Immunodeficiency Disease and Myalgic Encephalomyelitis means I can’t fight things off like others can, and the latter takes off about 30 years from my lifespan, but with these infections progressing as fast as they’ve been, I won’t get the chance to find out. So that’s what will happen if I’m unable to tolerate treatment. But as long as I’m able to handle even a little bit of medicine, I can eventually improve, or at least not get any worse until I’m able to tolerate higher doses of medicine. The risks are of course, damage from the antibiotics, but compared to the alternatives…? You can survive damage to kidneys or livers. Brains and hearts? Not so much. That’s why every treatment failure is such a letdown. It’s essential that I get this treatment now, before something truly terrible occurs.

Thursday I had an appointment with my neurologist. I think he’s given up on me. I’m too complicated a case, and he’s just not sure what to do about it. He gave me the name of a new neurologist that’s in my city. As far as the brain lesion, he’s trying to get in touch with the neuro-radiologist who discovered it, and find out why no one mentioned it before now! But otherwise he just didn’t know what to say, and it was basically a case of “please see another doctor.” He also couldn’t speculate on whether or not the spot had anything to do with these “episodes” I’ve been having, but he knows the doctor who took care of me in the hospital, so they’re going to talk about my case and I suppose get back with me this week. Ultimately, no answers, but I left with medicine for seizures and migraines, Topamax and Treximet. I got a Migraine followed immediately by one of the “episodes” as I was leaving his office, so I got to try out the Treximet right then and there. First Migraine I’ve gotten rid of without caffeine in over 12 years! The Topamax is primarily a seizure medication, but it can reduce the number of migraines as well, so even if I am having seizures that just didn’t show on the EEG, I’ll be covered. Amazingly, I’ve had minimal numbness during the past two days, and no “episodes” yet! I’m not sure if it’s just timing, or the Topamax, but I am so, so happy to be on it. Hopefully it will calm down my poor nervous system during the “headache phase” of my treatment, which is the first few months, when everything is really irritable and prone to spazzing. (Well, like we’ve seen.)

In other good news, I can tolerate drinking Ensure again! But I’m going to limit it to one a day and hopefully that will ward off any further problems. So yes, that’s great news as well! I’ve had a normal appetite and limited swallowing difficulties, so we’re all thrilled.

Slowly but surely I am regaining strength, which I will desperately need in the following weeks. On the ability scale I’d say I’m at 4% physical activity (3-5), 7% cognitive ability (5-10), and 7% symptom severity (5-10). We just need things to keep getting better… Considering that the antibiotics will make me worse at first, I’m not sure how that will happen. But that’s why I’m going to be on such a small dose. Even if it’s baby steps, we have to do this.

Also, completely out of the blue, someone on my forums told me there’s a Lyme Disease support group twenty minutes from me. So we will be attending soon! A Lyme group in my part of the country, how ironic. Turns out this part of the state is sort of infested, which is kind of crazy considering the CDC only reports a few cases per year, if that? Things like that make me wonder if a random tick really was the cause of my Tourette’s as a child.

This doesn’t blend in at all with the rest of what I’ve been typing, but… My friends have surprised me. I know that might be wrong to say in a way, because I’ve known a lot of them for almost or over a decade, but… I guess I was still halfway expecting people to not care or think I was important. Or maybe that’s the bugs talking, I don’t know. (Probably. That sounds bug-like.) But everyone has been so supportive, and sweet, and understanding, to the point that I almost just want to cry. It’s comforting to get to this stage in my life, where you honestly have no idea what’s going to happen, and know that you are surrounded by people who genuinely love you, just for being you. ♥ It keeps me going, to know that there are people rooting for me, and not just passer-by support like you get on a Twitter list or support forum, but people who consider me a major part of their life, even part of their family. I love them so much. ♥ I never could have imagined things would get like this so fast, but that in the midst of it, I’d be surrounded by close friends on every side. To someone fighting illnesses such as these, which often rip away all of your friends and most of your family, that is some sort of miracle in and of itself.

a rainbow at night

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