Sunday, November 11, 2018

I'm Still Here...

Well, I haven't written since June. I also basically stopped taking notes on my health, because there are no more triggers to figure out at this time, and I've got a pretty good record of my triggers and reactions if needed for future appointments. I haven't had any major doctor's appointments (just maintenance appointments with my psychiatrist). I also haven't really trialed any new medicines because I'm just trying to live my life. You know what I mean? Just trying to lay low, get by, and avoid making my mast cells angry. I just want to enjoy the calm and survive the storms.

Of course, life has worked against me left and right, as expected at this point. And a million things that seem like they couldn't go wrong or seem like they couldn't cause a problem are constantly happening. I have not been stable, but I've been stably unstable, if that makes sense.

I've still been working my job in transcription since February. I still make a mere pittance, but my typing skills are pretty awesome at this point (when my hands and wrists don't hurt too much). I mostly like the job, although I often feel that I am using up all of my energy for the day to earn about $4 an hour. I work 3-4 days a week for 3-6 hours each day. So anywhere from 10-20 hours a week, basically. It's something I can do and do well (I have perfect metrics, meaning the scores on my graded projects, which really satisfies the tiny part of me left with perfectionistic tendencies.). It's also fantastic to be able to work literally whenever I feel like it. I do all my work in bed, propped up by a bunch of pillows to try to make it ergonomic and not injure anything. But in general, I have increased hand and spine pain from working.

So, one thing that has gotten trickier with working is my sleep schedule. My body really, really hates normal sleeping hours. It's pointless to even try to go to bed before midnight or wake up before 11:00. But with many good jobs being available late at night, I'm often working until midnight, and it takes me another couple of hours to wind down after that. So, I'm often up until 2:00 or 3:00 AM. I get out of bed around noon most of the time. I never sleep through the night. Not in years. I always wish I could improve these hours so I wouldn't be so late-shifted, but whenever I try, I either simply can't sleep or I have terrible sleep quality, and I don't end up getting up any earlier. It's really annoying. I've also been experimenting with reducing the medicines that help me sleep to try to improve daytime wakefulness, but it's been pretty hit or miss. I should probably just stick with what's been working to get me to sleep because if I don't sleep well enough, my daytime wakefulness is not any better.

So, this leads to the brain fog problem. I have many different levels of brain fog. Sometimes, I just have a little trouble following a conversation or a TV show. Sometimes, I have trouble producing words and sentences. Sometimes, I have trouble producing thoughts. And sometimes, I am in a stupor, close to unconsciousness quite frequently. I have trouble responding to my surroundings with speech or movement. I experience all of these levels on a near-daily basis. There is not a day without cognitive impairment. It used to be pretty predictably terrible in the morning and improving in the evening, but that doesn't seem to be strictly true anymore. I can get lost in a fog throughout the day. They are some pretty serious cognitive deficits. My face is often completely expressionless, and it often takes a ton of effort to change that. It feels like I'm wearing a mask.My eyelids feel heavy, and my cheeks feel stiff. My memory is often a huge blur, so it's hard for me to even come up with words to say about what's been going on in my life. I honestly don't remember a lot of it. When people ask me how I'm doing, it is really hard to figure out an answer a lot of the time.

However, I do have a newer symptom which may be a result of my extended social isolation. When I do have a conversation with someone that I haven't talked to in a while, I may be so out of it that I stay in a fog, but I may also get over-stimulated. It's a really frustrating thing, because I crave interaction, but apparently, it is sometimes too much for me to handle, and I become basically hypomanic with pressured speech, and I feel overly-excited. This is followed by a crash later on. I really wish my body could just maintain some kind of homeostasis instead of the highs and lows (mostly lows at this time).

The big life event that has happened since I last wrote was the death of my Granddad. It was very stressful and distressing. I am very grateful that an outdoor meeting was possible and arranged for me to say goodbye to him. I attended his funeral in an unorthodox way, for sure. I sat in the car watching the service over Skype on my phone. It was a little ridiculous, but better than missing out. I also didn't have to feel bad about disturbing the service with my audible sobs. I came into the church, wearing my respirator, at the very end of the service. I just needed to hug my family. It was just so deeply sad, and I needed to be there. So, I was inside the church for a short, but meaningful time. I definitely suffered for it. I developed a full-body tremor when I got back to my car. I waited for another hour or more before leaving. I was incapacitated for the rest of the day, and suffered a reaction for several days afterward. Thankfully, I was able to sleep through this reaction. (I never take sleep for granted!) But it involved a lot of pain, including trigeminal and body pain, lethargy, itching, digestive issues, burning, vertigo, and some fevers.

The season change has been good and bad. As soon as the oppressive heat ended, I noticed that the smells in our apartment (especially seeping cigarette smell) seem to have mostly vanished. I doubt the neighbors have changed, more that the air is cooler, so the smell is less intense. This is for a few reasons: smells are diffused more quickly in hot air, hot air can absorb more scent molecules than cold air, and humidity makes your sense of smell more effective. So all of that works against me in the summer months. I struggled so much when they resurfaced our parking lot. I couldn't be home at all. I became completely manic. But as soon as the air cooled down, I could no longer smell it from our condo window.

So, cool air is easier to deal with that way. Also, mold growth really slows down in the winter, so that's a big plus inside and out. It also helps that we don't have to rely on our wall unit A/C which blows in mostly unfiltered outside air. However, then we have winter problems to deal with. The dry air is killer on my eyes. My dry eye disease was pretty well-managed over the summer, just requiring a few applications of preservative-free eye gel a night. Now that the air is cooler and drier, and we're running the heat, I've already started getting eye abrasions again while I sleep, no matter how much eye gel I use. So, I have to carefully manage our indoor humidity, which can be tricky to avoid mold growth and spread. But I'm managing it. Season change is also very hard for my migraines and facial pain. I feel every barometric pressure change in my face and sometimes in my whole head. Too low, too high, too steep a change=increased pain. But now that I am not often exposed to fragrance for very long, the pain usually doesn't reach the unbearable level.

My girl, Wilma, has been having plenty of problems to keep my mind worrying, and not about myself. She's had more intestinal infections. She lost her appetite completely for a while. I had to hand-feed her meals. She's very, very skinny at this point. But she is eating again. She's on her second round of antibiotic treatment in three months. It helps so much with her appetite and her digestion. I wish she could just stay on it. Probiotics made specifically for dogs and recommended by her previous vet seem to make the problem worse, so we'll stick with what works. She is on a tiny, tiny dose of a very safe antibiotic, and everyone is much happier when she can digest properly.

Unfortunately, she is still dealing with the effects of dementia. We notice it worsening week by week. It also seems to progress every time her GI flares up. She has some really strange behaviors, including getting herself stuck in very strange places (like wedged behind the TV or between a dresser and the wall or under my bed). She also has developed extreme thirst and restlessness late at night and in the overnight hours. This can make it very difficult for me to sleep because my sleep is so delicate. Any little sound or movement, even while wearing my earplugs, will wake me up, and I don't fall back to sleep easily. So, we're managing as best we can and trying to keep her happy, comfortable, and safe. It's just getting harder to do when she puts herself in precarious situations!

I'm sure there's a million other things that I've forgotten, but the only other thing I can think of right now is upcoming appointments. I am seeing my current immunologist this week. I haven't seen her since February, I think, so it is good to maintain that relationship. She also prescribes one of my specially formulated medications. I don't really have a PCP right now, so it makes sense to keep seeing her, even though she has nothing new to offer me for mast cells. I also will be having a dreaded dentist appointment sometime this winter. I haven't been in 3 or 4 years due to scents and not being able to wear my respirator when I am in the office. I don't go inside any doctor's office without my respirator. And I will be in close contact with the hygienist and the dentist, so we are going to try our best to make it an unscented and very efficient appointment. But I will still be absolutely terrified of how severely I'll react. My last appointment led to a month-long migraine, so I am truly fearful for how much pain I will invoke.

In February, I will have two important appointments. I will have my yearly appointment with Dr. Barboi, my autonomic neurologist. I'm pretty sure he won't have anything new for me to try, but I need to remain his patient too. He's a man you want in your corner, for sure, and he understands my situation better than most, even if he can't do a lot to help my current state. Finally, the big news is that I got an appointment scheduled with a mast cell specialist in Chicago. I should really say that my mom got me the appointment, because my past trauma prevented me from being able to make that call myself, and I don't believe it would have happened without her help. I think it is so important that I see this doctor, but I have only a modicum of hope that there is anything else that can be done for me. Nonetheless, it is something I absolutely have to try, no matter what the chances are of improvement.

I think that's everything. I hope everyone reading this is having a nice November. Thank you for those that read and that care, after all this time. I am endlessly thankful for the support I have in my life. I know where I'd be without it, and it's not here.

Here's what I mean when I say I wear a respirator to go out. I mean an actual respirator. Those dinky little cloth carbon masks do nothing for me anymore. This gives me a few minutes before symptoms start, due to skin absorption. But wearing it avoids the worst of the trigeminal pain I get from every scent imaginable. I still end up with miserable symptoms for days after an exposure, but the suicide pain in my face is so much less, as long as I don't stay anywhere too long. It's better than nothing! But it doesn't give me my freedom.