I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've brought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me! ~ Dr. Seuss
This last month has been less than troublesome. At least a whole lot less than I expected. I began my first round of treatment with the first of 24 antibiotic injections on September 14th. I was told to expect the experience to be painful - the thick suspension is injected into the upper-outer hip using a 21 gauge needle. The needle itself is enough to give some a complex - even me if I think about it too hard. It takes about 6 minutes to inject with little pain. The faster it's done, the more it stings. I typically sit on a heating pad for about 20 minutes prior to the injection, which also seems to help a bit. As does sitting on it afterward. The discomfort after each injection is much like what I remember my last tetanus shot to be. We typically do injections on Mondays and Thursdays, alternating hips each time. The right hip will ache until Wednesday, just in time to shoot the left hip on Thursday which will ache until Sunday.
Aside from one injection, the discomfort hasn't been bad enough that I feel the need to discontinue this form of treatment and seek out another. I've lived in chronic pain for so long that it doesn't really bother me too much anymore. And with each injection, I pray that I'm that much closer to regaining my 'old' life.
Many have asked if I'm feeling a difference. In some ways I am but in other ways I'm not and I'm not able to really identify it yet. All of my symptoms are still there but they may just be less severe at times. Hard to say.
I haven't experienced any herxheimer reactions to speak of. Herxing is basically when the treatment kills off the bacteria creating a toxin that exacerbates all the symptoms. In general terms - getting a whole lot worse before getting any better. It's unusual to not experience herxing. Unfortunately, I don't know if I'm just lucky or if I'm on the wrong treatment because my doctor hasn't had time to answer my questions.
We've had two follow-up appointments. The first was supposed to be an hour and may have only been 15 minutes. Just long enough to educate Mom & me on how to do the injections at home. The second was supposed to be a half-hour and we saw the doctor for less than a minute. Her answer to my questions was that we could discuss it at my next follow-up appointment in 3-4 weeks. I'll be 2/3 of the way through treatment by then. We'll see how that appointment goes but I'm seeking out another provider in the meantime. I know there are very few LL providers compared to the number of lyme patients. I can appreciate that I'm not nearly as bad off as most patients. But I still need to know if I'm doing all that I am supposed to be doing or if I need to change things up a bit.
We've been very blessed with a mild autumn, which allows me to still get out to a few of the kids' games or just meet with friends at the park. Both activities allow me to get out for a few hours, get fresh air and sun, as well as spend time with those who are able to accept my limits and celebrate the fact that (for the moment) I'm not bed-ridden.
I've also been blessed with support from childhood and high school friends (some of whom I haven't seen in 15+ years). Thank God for Facebook! Most of them had never heard of Lyme, or didn't know much about it, until I was diagnosed. But they still celebrate and provide encouragement throughout this journey I'm on.
A year ago my vestibular system was so imbalanced I had to brace myself on the wall as I walked from my bedroom to another part of the house. I still have moments now but they're fairly brief. We'll see how the next few months progress and compare them to the twelve months prior. I still have limited energy - only about 2-3 hours a day for activity. I started some amino acids last month in hopes of calming the nervous system but I'm still quite sensitive to stimuli - I can watch my shows on my laptop but struggle with the television; I occasionally have to wear earplugs at the kids' games to provide a buffer from the cheering & whistles and the other morning the carbonation fizzles in a can of ginger ale sitting beside my bed woke me up; lights tend to bother me but not as badly; I seem to be running warmer this year than last; I'm still sensitive to touch - featherlight is as painful as being hit but deliberate, whole-hand pressure has been okay. I went about a month or so of not being able to read any books. My comprehension was that low. I've since been able to get back into books - provided they're part of a series in which I'm already familiar with the story line or there aren't a whole lot of characters/detail to process. I sometimes come across simple terms that I have to look up because I don't recall the meaning of them. If it were humanly possible to examine my innards and compare them to that of a healthy person and I would jump on the chance!
I came across an article featuring Pamela Weintraub's speech at the Institute of Medicine's Lyme workshop recently. I struggled with some of the terms she used but feel that over-all, it's a very well-written example of what Lyme patients have to deal with. Please educate yourself as well as those around you and please do not be afraid to advocate for yourself and those around you. You can find the article here.
I don't know exactly what lies ahead but I do know what lies behind. I'm thankful for the blessings of family & friends, thankful for the acupuncturist who finally identified the reason behind my life-long illness, thankful for the prayers that have been and continue to be prayed, and thankful for the strength and the will that I never knew I had until I needed it to fight. Who says stubbornness is a bad thing?!
