It has been far, far too long since I’ve posted an update. The fantastic news is, I’ve now been off the antibiotics for almost a month, and my quality of life is significantly improved now that the side effects from those are not kicking my ass! I assure you that when you reach a certain level of illness, quality of life is critically important, because that is your ability to not be a completely miserable mess day in and day out, even if you’re not capable of doing the things a normal person might expect to do. Right now, as I’m writing this, I can honestly say that my quality of life has not been this good in YEARS.
We did have a bit of a scare because I’d had worsening digestive symptoms since about December and I’m STILL B-12 deficient, and my doctor was worried that I might have an active H. Pylori infection that would require treatment with different antibiotics. Thankfully, the tests for that came back completely negative. That got me thinking about other things, and I realized it might be theobromine poisoning (chocolate poisoning). I have been eating chocolate in moderation during my illness, but I did not eat it in moderation in my young adulthood. I love chocolate. I mean, I really LOVE chocolate, the darker the better. When I was 20, 21 years old, I ate at least one dark chocolate bar every day, not candy bars, chocolate bars. Some days I had two or three chocolate bars. Eventually, I DID give myself theobromine poisoning, and I had to stop eating chocolate altogether for about ten years. When I was able to eat chocolate again I did so sparingly, and that’s where I’ve been for the past few years.
When I stopped to think about it, the worsening digestive symptoms didn’t match the problems caused by my illness, but they DID perfectly match the theobromine poisoning I had experienced in my early twenties. I had indigestion, bloating, loss of appetite, and heartburn as the most obvious symptoms, with suspicion that the food I was eating didn’t fully digest (resulting in the continued B-12 deficiency). One of the problems with theobromine poisoning is that once you have made yourself sensitive to it, you’re more prone to sensitivity in the future, especially as you get older. I may not be elderly yet, but I wouldn’t be surprised if the digestive problems caused by my illness exacerbated the sensitivity. Thus, I stopped eating chocolate immediately, and within a week the heartburn has reduced back down to very low levels, I haven’t had any weird bloating, and my appetite has almost returned to normal. So, I am confident I have my culprit. Sadly, this means I may need to avoid chocolate for the rest of my life, but better that than theobromine poisoning. Trust me.
The H. Pylori is part of the reason for the delay in posting an update. The question came up in mid-March, and I didn’t want to say anything about it until I knew for certain what was going on since it had the potential to completely change my treatment in the near future. I got the results of the test late last week, and talked to my doctor last Friday about how this is going to work now.
So, I’m no longer on antibiotics, which means I also won’t need a few of the supplements which I was taking just to support my body through the long-term antibiotic treatment. I’m still on all of them right now, but as I run out of some I won’t be ordering more. I will be continuing to take the activated charcoal, which will help to flush the remaining debris from the treatment. I’ll also still be on most of the supplements I was taking before starting the antibiotics, to support my body while it recovers from the anaplasma. The bacteria may be dead, but my body is very damaged and dysfunctional and there is no way to predict how long it will take for me to fully recover.
The best news, though, is that I am recovering!
No matter how long it takes, I am very, very happy about that.
I am now cleared to use my discretion regarding my diet and exercise, with the very emphatic caveat that I not overdo it, because I can easily kick myself in the ass and set back my recovery. I’m still plagued with fatigue, so I’m not specifically exercising yet, but I hope to in the near future. I will be starting very easy, and I’ll have to be careful not to push it. Right now it’s enough to just walk around my home a bit more, and that’s enough to be causing spikes in pain.
As for diet, in recent weeks I have tested my tolerance for both cow milk and gluten. In both cases, I am fine if it’s a minor ingredient in another dish, but as a major component my system can’t handle them. For example, I could eat Indian food, including some dishes with cream or yogurt (but not as a primary ingredient). However, when I had frozen yogurt this resulted in severe abdominal pain about 36 hours later. I have, however, resumed eating root vegetables and sugar, and I have no intention of testing my tolerance of peanuts or bananas anytime soon.
As for my ability to create art, I am happily making things again. I was able to create a knotwork design a few weeks ago, and worked on a cosplay outfit for a friend that proved to me I can once again work with enough precision to make corsets. I’ve mostly been working on garb pieces for myself and Diana to wear when we attend SCA events, which has been my primary social outlet since moving to Las Vegas, and where I’ve made many new friends. It takes me a lot longer to make each item than it did when I was well, but it feels damned good to be making things again.
In the month of May I am expecting to spend most of my energy preparing for panels and a workshop I’ll be giving at Clockwork Alchemy. Also before the convention I need to replace the busk on Diana’s green silk corset, which broke last time she wore it. When I don’t have the energy to work on either of those, I’ll probably be hand-sewing a sideless surcoat I’m currently working on, or embroidering the scalloped veil. I also have decided what to paint the Triskittehs on, so I’m hoping to start the finished piece soon.
After Clockwork Alchemy, I want to get back to some corset making. I still have a couple outstanding customer orders for a couple very patient people, and I want to get their corsets to them. However, it has been two years since I made my last corset, so I feel it’s important to make a corset for myself first to make sure I don’t mess them up, and so I can try some techniques that I’m not completely familiar with.
Oh, one other thing I’m excited about is rather vain, but it has a lot to do with my outward expression of self. My hair stopped falling out as soon as I started the antibiotics, and although it’s grown much more slowly than it used to, it has been growing in with its normal fullness, and it is back to a decent length. In the very near future we will be shaving it back into a mohawk, and before Clockwork Alchemy we will be bleaching and dying it a bright candy color!
On a somewhat similar note, Diana got a me a piercing stretching kit, so I’ve been able to stretch out my earring holes back to 14 guage, so I can re-insert my permanent jewelry. I have seven holes in my ears, but had to take the earrings out before getting MRIs and such. The holes shrank and I couldn’t get the jewelry back in. Now that there are no MRIs in my foreseeable future, I can once again have leave-in jewelry in my ears!
Now I just need to create the artwork for a tattoo to commemorate my return to good health, which I plan to get after I am well enough I no longer need the walker.
Exciting things to come, my friends. Exciting things to come!