One Year Off Antibiotics

This blog entry is an incredibly overdue update on my health situation.  It has been just slightly over one year since I finished an eight month run of antibiotics for anaplasma phagocytophilum.  During this time I kept putting off writing an update with the intention of creating a video update, but I’m not very comfortable with video so that has never happened.

First off, and most importantly, my quality of life is leaps and bounds better than it was this time last year.  As soon as the antibiotics were completely out of my system I was immediately feeling better in very real ways that make my days far less miserable than they used to be.  These weren’t the sorts of changes that would allow me to operate in a normal, healthy, manner, but instead meant that I didn’t spend every waking moment feeling like I had been beaten with the uber-sick-stick.  I still have ups and downs, like at the end of March and beginning of April went through a couple weeks where I was once again feeling so miserable that I could barely manage to take care of myself, but those periods are becoming less frequent and less severe over time.  Most days I can say that my overall sense of wellness is pretty decent, and some days I can genuinely say that I feel pretty good.

For those of you who follow my blog, you’ve doubtless noticed that I have been able to be more productive again, posting embroidery and sewing projects mostly.  It’s felt fantastic to be able to work on projects more often!  It’s still nowhere near the artistic productivity level I had when I was in the early stages of my illness and working full time, but I am making progress.  It’s just a very long process, one that is likely to not see an end for at least a couple more years, if not a few more years.

I’m still not able to walk very far or exercise (no yoga routine yet).  I still use my cane all the time, and the walker when I go out to events.  I’ve still had trouble with seizures, although those seem to be reducing over time.  On a related note I’ve still had trouble with tremors, which still makes it difficult or impossible to work on fine art paintings and drawings most of the time.  Naps are no longer a daily requirement, and most of the time I’m sleeping a fairly normal 9-10 hours each day, unless I push myself.  It is a fantastic thing to be capable of pushing myself to get things done, like a large dragon cake build I did last week for the Barony of Starkhafn Anniversary (SCA), but I still don’t recover from pushing myself like a normal person would.  I’ve been sleeping a minimum of 12 hours every day since (it’s been almost a week), and on Monday in particular I was awake for a grand total of seven hours.  It’s not that I want to sleep that much (nothing gets done when you’re sleeping), but I really don’t have a choice in the matter when my body shuts down.

I still have problems with shortness of breath, especially in the presence of lung irritants like cigarettes or e-cigs (obnoxiously difficult things to avoid if I go anywhere in Las Vegas), or if I try to walk more than about 30 yards, and I still can’t tolerate caffeine.  I tried the caffeine because I wanted to return to drinking my green tea, but I found that it exacerbated my problems with fatigue, which is still the symptom that is the most debilitating for me.

On the bright side, I am feeling well enough that I have started writing again, and have been up to maintaining this blog more consistently.  I have been compiling information for projects and workshops, and hope to have more info on those up on this site in the near future.  I’m working on hand sewing and embroidery tutorials, and a corset pattern drafting tutorial.  I have materials waiting on making a couple corsets again, which I very much want to do in the next couple months.

Despite my best wishes, I am still nowhere near capable of working a normal job or re-opening my business.  Both of those things will happen, but not yet.  On a good day, sure, I could handle either.  On a bad day I still can’t manage much more than feeding myself.  On an average day I wear out too quickly to be genuinely productive or reliable, and if I continue working past the point of fatigue I am guaranteeing myself a run of bad days that could last anywhere from five days to three weeks.

Basically, I am feeling well enough to have a taste for what I used to be capable of doing.  I do my very best to keep this in a positive light and be happy for what I am able to do, but it also gets frustrating because I want to be doing so much more!

Time, my friends.  All I need is patience and more time.  I’ll get there.

Health Update – 1 May, 2014

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!

Medical Update 25 February 2014

I had an appointment with my doctor on this past Monday, and the news is mostly good.  I’m going to be finishing out the antibiotics I have on hand, which is about a month’s worth (a little less for one of them, and a little more for the other), and then I will be stopping the antibiotics and moving on to the recovery faze of my treatment. There is no way to predict how long that will take, or how complete the recovery will be. It may be a couple years, or it may be a great many. No telling.

My blood test was completely within normal range for liver function, despite worrisome numbers last month, which was awesome. Instead she focused on the numbers that indicate I am still B-12 deficient. This isn’t really anything new. I’ve been B-12 deficient since my first blood tests with her this time last year, and the numbers have slowly been getting worse, even though I am on massive (and I mean MASSIVE) doses of injected B-12 and have been since last May. However, since we will be going into the recovery faze shortly, this is now a critical issue to correct, and it is probably related to my digestive problems since my body is not absorbing the plentiful B-12 available through the injections.

I’m quite disappointing to find out that my digestive symptoms are not nearly as under control as I had thought. I have had increasing heartburn and indigestion the past few weeks, but I had assumed it was due to the antibiotics, not my symptoms. Frankly, it can be damned hard to tell which is which since my symptoms are so systemic.

So, my doctor wants me to go on a diet of organic baby food so my body can more easily and quickly digest all the nutrients it needs to be able to absorb the B-12 (and I’m sure other lovely things as well which are not so pointedly trackable). Frankly, we can’t afford for me to eat all-organic anyway, and baby food is sick expensive even when it’s NOT organic. There is no way in hell we can afford to buy enough organic baby food to feed a grown, adult woman who does not and never has eaten a small amount, even with my currently nearly non-existent activity level. I’d probably need to eat nine to thirteen little jars for each meal!

Instead, Diana and I spent a good chunk of today shopping for foodstuffs. We STILL spent a ridiculous amount of money, but we needed to change the proportions of ingredients at my disposal so they would be better suited to the new diet restrictions, and she bought me a Nutri-Bullet machine so I can turn all my meals into blended smoothie/soup/pate concoctions. The green smoothies are going to be fairly easy. I just to need to make sure I’m keeping it closer to a 75%/25% veg/fruit proportion, instead of the more common 40%/60% or 50%/50%. However, I also need to keep my protein intake very high (I eat a a significant source of protein at least two meals a day), so we picked up some hemp protein (the whey protein all had soy in it, so that was out) and I have nuts and can add things like quinoa to the green smoothies, and I will pair that with eggs (she specifically wanted me to up my egg intake, because it has lots of stuff that help with B-12 absorption). In the next few days I’m planning to look up baby food and pate recipes so I can hopeful figure out some blended meals involving meat that are not repulsive. I’m figuring anything I could make as a soup will work, but I’m not totally confident of that.

My doctor is also ordering another blood test that I frankly don’t understand.  My mind shut down completely while she was trying to explain it, but I think it will help her to more definitively sort out why my body is failing to absorb B-12.

I’ll most likely post another update in about a month when I’ve had another appointment and am off the antibiotics.

Health Update 21 January 2014

I just got off of skype with my doctor. She’s still happy with my progress, and my blood work still looks pretty good overall, which means we’re still on course for six months of antibiotics. She’s waiting until I have insurance to order some more labs so we can get a clearer idea of what’s going on inside me (like re-testing for Anaplasma, I’m sure). I did get a letter from the state of Nevada (in all caps, very difficult to read) which confirmed that I qualified for Medicaid, but I have not yet received any of the insurance information I need to actually USE said insurance, and the letter implied that I might not get that until February. So, yay, wait…

In other related news, we did talk quite a bit about the seizures, and she wants to address them since they have gotten worse in the last six months. She is not willing to prescribe pharmaceutical anti-seizure medication (which is great, since I’m not willing to take it), but she did prescribe a homeopathic medicine I can try to help reduce overall inflammation and hopefully help with the seizures as well (can’t remember what it is at the moment, but I’ll post again on this later when I’m actually taking it). She’s also going to look into what else she can recommend to try that won’t have the massive horrid side-effects of the traditional anti-seizure medications.

I love my doctor. Integrative medicine is awesome. Best of both worlds.

Health Update – Five Months of Antibiotics So Far

It has FAR too long since I have recorded an update, but here it is at long last. Treatment is going extremely well, and I have my fingers firmly crossed that I may be done with the antibiotics very soon.

 

I have been feeling well enough to slowly work on some projects that should eventually make their way onto this website.  Unfortunately, I may be feeling well enough to do some of the things, but nowhere near well enough to do all of the things, and some days I don’t feel well enough to do any of the things.  Basically, that means that when I do have the energy to work on projects, by the time I stop I have not had the energy to take good photos or do any blogging about any  of it.  Patience, though, for this will not last forever and I am planning lots of delights to do and to share with you.

Health Update – One Month of Antibiotics & Vlogging

It’s a little over a month since I started on the antibiotics. Things are going well overall. There’s nothing dramatic to report. Intellectually I knew it was unlikely that I would experience dramatic improvements immediately, but emotionally I couldn’t help but hope. Some days are still better or worse than others, with the worse days as bad as ever, but the good days are better than my good days have been in a long time, so I’m happy for that.

I was asked by friends to vlog my progress on the antibiotics, but due to the kerfuffle with my site I delayed posting here until things were mostly functional.  I am listing them here in the order I recorded them.  During the herx reactions I recorded almost daily, but since then I have recorded less frequently.  All of these and any future videos may also be found on their own YouTube Playlist, Kicking the Anaplasma.

 

The Herxening – Day 1

 

The Herxening – Day 2

 

The Herxening – Day 3

 

The Herxening – Day 4

 

The Herxening – Day 5

 

The Herxening – Day 6

 

The Herxening – Day 7

 

The Herxening – Day 8

 

The Herxening – Days 9, 10, & 11

 

Anaplasma Treatment – Two Full Weeks

On this day I decided to talk about the history of my illness and how I have dealt with it.  The video is a little long.  You have been warned.

 

Anaplasma Treatment – One Month

In this video I mostly talk about some of the treatments I’ve been doing other than the antibiotics, to help answer questions and very valid concerns about the dangers of the long-term antibiotics.

 

Started Long-Term Antibiotics

This morning at 6:30 am, I took my first dose of antibiotics. It will be the first of three today. If all goes well, I will continue to take them on a schedule overseen by my doctor for the next six months. I will be taking monthly blood tests to ensure that the antibiotics themselves don’t result in complications. Hopefully the anaplasma infection will be cleared up within that six months, and we won’t need to extend the duration of the antibiotics.

So, herx reactions… Well, so far I’m in a damned good mood, and feeling mostly normal. I do have a cough now, and my nose is running a bit. I’ve also has a weird ringing and pressure in my left ear a couple times that threw my balance momentarily. I suppose just not enough of the buggers have died yet for me to be feeling it much. I’m sure that will change.

Oh, and as for side benefits, I’m keeping my fingers crossed that I won’t have acne for the next several months. ;)

Apple Blossoms