Oh god, I hope so!
I know it's been so long since I wrote anything here. This is a bad habit I have, and one I thought that I could put behind me in the best interest of this project. When I don't feel well, I clam up. I don't want to talk about it because no amount of talking makes it better. And also because when I feel very poorly, it's the only thing I can think about is how poorly I feel. Who wants to hear about that all the time?
I was also hesitant to write about my health because I feel I'm undertaking an experiment that will benefit many of my loved ones if it's successful. I mean that in a couple of different ways. Obviously, if my health resets itself, and I'm able to resume a somewhat normal life, I'll be able to work more, make more money, improve our quality of living, play with my kids, stay up late, go outside in the daylight, live near lilac trees and so many other things. So that's one thing. But also, I have numerous friends who have various autoimmune disease. If this whole gamble pans out, my friends might have a chance at feeling better, too. I didn't want to dwell on the fact that I wasn't feeling well. I've read enough helminth therapy success stories to know that it can take a year or more for it to work. Despite the fact that I was a little discouraged, I just kept breathing through it and waiting it out.
Four weeks ago, on a Tuesday (one of three days I work each week), I woke up and didn't immediately want to go back to bed. I couldn't remember the last time that my first waking thought of the day wasn't my afternoon nap. I got up, did all of my morning stuff, and went to work at noon. All day, I waited for the fatigue to descend. It wasn't like I was dreading it - it is the most recent version of normal for me. But it didn't happen. I maintained my high level energy throughout the entire day, working on projects that had been tabled for weeks. My shift ends at 8 pm, and typically I drag myself home, watch an hour or so of television with my family and then gratefully climb into my bed. But that night, I got home and thought I'd just wash up the dinner dishes real quick before TV time. At 10:30, my son said it was time for him to go bed and I was shocked. I said, "I really need a shower before bed." My partner was worried about me trying to shower so late at night, so she came to sit in the bathroom with me in case I was too fatigued to get in or out of the tub.
But it went fine. Showering. I was able to shower without exhaustion, light-headedness or heart palpitations I stepped out feeling as energetic as I had when I stepped in. I stood there, toweling off and talking with my partner about my day. She seemed anxious and I asked what was wrong. "Nothing's wrong. But you're standing there all wet, and I'm worried you're going to get hives. We need to get you under the blankets." I wasn't even feeling prickly, which struck both of us as very, very odd. I scurried off to bed anyway, because it was likely just a matter of a few more minutes before the histamines started pumping and I'd be in a bad place. I tucked in to bed and my partner brought my bedtime medicines to me. I drifted happily off to sleep.
The next morning, I woke up about 15 minutes before my alarm went off. I got up and got my family off for the day. I did not go back to bed. I did not curl up in the corner of the couch with my coziest blanket and stare out the window. I cleaned the kitchen. And then I folded laundry. And then I proceeded to have a pretty normal day of chores and errands. At the end of the day, I made dinner and danced in front of the stove. At bedtime, I said, "I spilled dishwater all over me tonight, and I feel gross. I'm going to take a quick shower." My partner raised an eyebrow.
"Are you sure? You showered last night."
Because of the effects of showering, I typically only do it a couple of times a week - three times if there's a really good reason. But I smiled and said I was sure. She came in the bathroom again to make sure I was safe while showering. I had the same good results as the night before. And again, I didn't have any prickling afterwards, and certainly no hives. I still hurried to bed because when the urticaria starts, it's vicious and painful.
The third morning, a Thursday, I again woke up before my alarm. I maintained the same high energy and good spirits all day. I risked a third shower in three days before bed, and was no worse for the wear. When I was laying in bed that night, I realized that I hadn't had a single case of cold urticaria since at least Tuesday. It might have been longer but I hadn't been paying close attention until I had had this surge of energy. Before this time, I was still having four or five incidents of cold hives every day. Managing my temperature was one of the primary focuses of each day. Wearing layers that I could take off and put back on, carrying my fingerless gloves with me even in the summer, never wearing sandals (or even shoes without socks) - this was my life. And it stretched beyond just staying warm all the time. I also had to not allow myself to get too warm. Sweating is the body's natural way to cool itself. Thus, getting warm enough to sweat meant almost immediately getting hives, too. It has been a major preoccupation for me.
On Friday when I woke up before my alarm, I just smiled and stretched. It seemed like I was headed into another day of having lots of energy and I was delighted. Throughout the weekend, the pain in my feet, knees and hips dwindled and eventually disappeared. My appetite also decreased, and the weight that I have gained while being sick started to drop away. It was trick-or-treat in our neighborhood, and was unseasonably warm. Still that much walking after dark in the fall, even on a balmy night, would normally have resulted in several days in bed. But once we were done trick-or-treating, we took two of the kids out for pie, and then went home and watched TV. Around midnight, I went to bed (freshly showered again) feeling very excited about what all of this meant.
I wasn't really telling anyone exactly how I was feeling or what I was hoping. My family and friends are so very dear, and have been riding this roller coaster with me for years. I didn't want to get anyone's hopes up, not my own, and especially not my kids. At this point, there is no definitive way to know if this is a result of helminth therapy, or just a variation on my disease activity that will come crashing to a halt.
But one more thing happened that led me to believe that I was seeing the benefits of my worm friends. On Monday morning, my middle daughter woke up with a violent stomach bug. I went to her, of course, and took care of her. I cleaned up the mess and then washed my hands. I got her settled on the couch where I could keep an eye on her. I stayed close to her all day with no fear of contracting what she had, despite the fact that several members of our extended family were also suddenly sick. We quickly ruled out food poisoning, and so knew it was viral. I wasn't worried, though, because I never get sick. Not ever. Not colds, not flus, not stomach bugs - nothing. Oh, I mean, I have mixed connective tissue disease, and allergies, and sensitivities, and an ulcer, and various skin ailments. But for years, I haven't contracted a single viral or bacterial illness. I've theorized that this is because my immune system is so badass that in addition to trying to kill me slowly, it also just defeats anything that tries to get me sick. In fact, at the few points where I thought I was coming down with something, the main symptom I had was major relief from my autoimmune symptoms.
We got through the day, and I hoped that she would wake in the morning feeling much better. She did, in fact, feel mostly well when she woke. I, on the other hand, was sick. I had gotten the stomach bug! For real! I know, I know - it's a weird thing to celebrate. But I think it must be the result of some decent regulation of my immune system by the worms. I didn't get quite as sick as she did, and I recovered quickly. But I actually caught a virus, and I think it has to be a sign of progress.
The next weekend was my birthday, and I got an extra special gift - Another dose of worms. I applied them at about midnight on Saturday night and went to bed. I woke up Sunday morning with intense itching at the inoculation site and seemingly boundless energy. Seriously. I couldn't stop moving. I caught myself skipping. In the house. THREE TIMES! I cooked a big elaborate meal for my birthday dinner and danced all day in the kitchen. My son came to help me with the cake (mom - you CAN'T make your own birthday cake!) and said to me, "You have really good energy today! I can't wait until you're really well and you feel this good all the time." I almost cried.
Things have continued to improve. My feet and hands have almost no swelling in them. I am losing the weight from my illness. I think I've lost about 10 pounds so far. I have several very long days at work and am still able to get up the next day and meet all of my obligations. I am less foggy headed and forgetful. The flare in my arm is at least 50% better, too. Very little swelling and a little less pain than before. Oh! And I almost forgot. My voice has been hoarse for more than three years, but it's finally starting to resolve. My speaking range is much bigger than it has been for a very long time, and I no longer sound like a smoker.
The only symptom that hasn't improved, and has in fact worsened, is my malar rash. There have been several days when it's worse than it has ever been, and no days when it's better. I'm not sure why this is. My main theory is that because my active disease first showed itself with this malar rash, the tissue in my face is more damaged. If this is true, it would explain why my face isn't healing yet. I still have faith that it will improved, too. I just need to give more time. When I look in the mirror and feel impatient, I try to remember to say out loud, "I am grateful for the healing I have achieved so far."
I am grateful for the healing I have achieved so far. And it's just beginning.
I know it's been so long since I wrote anything here. This is a bad habit I have, and one I thought that I could put behind me in the best interest of this project. When I don't feel well, I clam up. I don't want to talk about it because no amount of talking makes it better. And also because when I feel very poorly, it's the only thing I can think about is how poorly I feel. Who wants to hear about that all the time?
I was also hesitant to write about my health because I feel I'm undertaking an experiment that will benefit many of my loved ones if it's successful. I mean that in a couple of different ways. Obviously, if my health resets itself, and I'm able to resume a somewhat normal life, I'll be able to work more, make more money, improve our quality of living, play with my kids, stay up late, go outside in the daylight, live near lilac trees and so many other things. So that's one thing. But also, I have numerous friends who have various autoimmune disease. If this whole gamble pans out, my friends might have a chance at feeling better, too. I didn't want to dwell on the fact that I wasn't feeling well. I've read enough helminth therapy success stories to know that it can take a year or more for it to work. Despite the fact that I was a little discouraged, I just kept breathing through it and waiting it out.
Four weeks ago, on a Tuesday (one of three days I work each week), I woke up and didn't immediately want to go back to bed. I couldn't remember the last time that my first waking thought of the day wasn't my afternoon nap. I got up, did all of my morning stuff, and went to work at noon. All day, I waited for the fatigue to descend. It wasn't like I was dreading it - it is the most recent version of normal for me. But it didn't happen. I maintained my high level energy throughout the entire day, working on projects that had been tabled for weeks. My shift ends at 8 pm, and typically I drag myself home, watch an hour or so of television with my family and then gratefully climb into my bed. But that night, I got home and thought I'd just wash up the dinner dishes real quick before TV time. At 10:30, my son said it was time for him to go bed and I was shocked. I said, "I really need a shower before bed." My partner was worried about me trying to shower so late at night, so she came to sit in the bathroom with me in case I was too fatigued to get in or out of the tub.
But it went fine. Showering. I was able to shower without exhaustion, light-headedness or heart palpitations I stepped out feeling as energetic as I had when I stepped in. I stood there, toweling off and talking with my partner about my day. She seemed anxious and I asked what was wrong. "Nothing's wrong. But you're standing there all wet, and I'm worried you're going to get hives. We need to get you under the blankets." I wasn't even feeling prickly, which struck both of us as very, very odd. I scurried off to bed anyway, because it was likely just a matter of a few more minutes before the histamines started pumping and I'd be in a bad place. I tucked in to bed and my partner brought my bedtime medicines to me. I drifted happily off to sleep.
The next morning, I woke up about 15 minutes before my alarm went off. I got up and got my family off for the day. I did not go back to bed. I did not curl up in the corner of the couch with my coziest blanket and stare out the window. I cleaned the kitchen. And then I folded laundry. And then I proceeded to have a pretty normal day of chores and errands. At the end of the day, I made dinner and danced in front of the stove. At bedtime, I said, "I spilled dishwater all over me tonight, and I feel gross. I'm going to take a quick shower." My partner raised an eyebrow.
"Are you sure? You showered last night."
Because of the effects of showering, I typically only do it a couple of times a week - three times if there's a really good reason. But I smiled and said I was sure. She came in the bathroom again to make sure I was safe while showering. I had the same good results as the night before. And again, I didn't have any prickling afterwards, and certainly no hives. I still hurried to bed because when the urticaria starts, it's vicious and painful.
The third morning, a Thursday, I again woke up before my alarm. I maintained the same high energy and good spirits all day. I risked a third shower in three days before bed, and was no worse for the wear. When I was laying in bed that night, I realized that I hadn't had a single case of cold urticaria since at least Tuesday. It might have been longer but I hadn't been paying close attention until I had had this surge of energy. Before this time, I was still having four or five incidents of cold hives every day. Managing my temperature was one of the primary focuses of each day. Wearing layers that I could take off and put back on, carrying my fingerless gloves with me even in the summer, never wearing sandals (or even shoes without socks) - this was my life. And it stretched beyond just staying warm all the time. I also had to not allow myself to get too warm. Sweating is the body's natural way to cool itself. Thus, getting warm enough to sweat meant almost immediately getting hives, too. It has been a major preoccupation for me.
On Friday when I woke up before my alarm, I just smiled and stretched. It seemed like I was headed into another day of having lots of energy and I was delighted. Throughout the weekend, the pain in my feet, knees and hips dwindled and eventually disappeared. My appetite also decreased, and the weight that I have gained while being sick started to drop away. It was trick-or-treat in our neighborhood, and was unseasonably warm. Still that much walking after dark in the fall, even on a balmy night, would normally have resulted in several days in bed. But once we were done trick-or-treating, we took two of the kids out for pie, and then went home and watched TV. Around midnight, I went to bed (freshly showered again) feeling very excited about what all of this meant.
I wasn't really telling anyone exactly how I was feeling or what I was hoping. My family and friends are so very dear, and have been riding this roller coaster with me for years. I didn't want to get anyone's hopes up, not my own, and especially not my kids. At this point, there is no definitive way to know if this is a result of helminth therapy, or just a variation on my disease activity that will come crashing to a halt.
But one more thing happened that led me to believe that I was seeing the benefits of my worm friends. On Monday morning, my middle daughter woke up with a violent stomach bug. I went to her, of course, and took care of her. I cleaned up the mess and then washed my hands. I got her settled on the couch where I could keep an eye on her. I stayed close to her all day with no fear of contracting what she had, despite the fact that several members of our extended family were also suddenly sick. We quickly ruled out food poisoning, and so knew it was viral. I wasn't worried, though, because I never get sick. Not ever. Not colds, not flus, not stomach bugs - nothing. Oh, I mean, I have mixed connective tissue disease, and allergies, and sensitivities, and an ulcer, and various skin ailments. But for years, I haven't contracted a single viral or bacterial illness. I've theorized that this is because my immune system is so badass that in addition to trying to kill me slowly, it also just defeats anything that tries to get me sick. In fact, at the few points where I thought I was coming down with something, the main symptom I had was major relief from my autoimmune symptoms.
We got through the day, and I hoped that she would wake in the morning feeling much better. She did, in fact, feel mostly well when she woke. I, on the other hand, was sick. I had gotten the stomach bug! For real! I know, I know - it's a weird thing to celebrate. But I think it must be the result of some decent regulation of my immune system by the worms. I didn't get quite as sick as she did, and I recovered quickly. But I actually caught a virus, and I think it has to be a sign of progress.
The next weekend was my birthday, and I got an extra special gift - Another dose of worms. I applied them at about midnight on Saturday night and went to bed. I woke up Sunday morning with intense itching at the inoculation site and seemingly boundless energy. Seriously. I couldn't stop moving. I caught myself skipping. In the house. THREE TIMES! I cooked a big elaborate meal for my birthday dinner and danced all day in the kitchen. My son came to help me with the cake (mom - you CAN'T make your own birthday cake!) and said to me, "You have really good energy today! I can't wait until you're really well and you feel this good all the time." I almost cried.
Things have continued to improve. My feet and hands have almost no swelling in them. I am losing the weight from my illness. I think I've lost about 10 pounds so far. I have several very long days at work and am still able to get up the next day and meet all of my obligations. I am less foggy headed and forgetful. The flare in my arm is at least 50% better, too. Very little swelling and a little less pain than before. Oh! And I almost forgot. My voice has been hoarse for more than three years, but it's finally starting to resolve. My speaking range is much bigger than it has been for a very long time, and I no longer sound like a smoker.
The only symptom that hasn't improved, and has in fact worsened, is my malar rash. There have been several days when it's worse than it has ever been, and no days when it's better. I'm not sure why this is. My main theory is that because my active disease first showed itself with this malar rash, the tissue in my face is more damaged. If this is true, it would explain why my face isn't healing yet. I still have faith that it will improved, too. I just need to give more time. When I look in the mirror and feel impatient, I try to remember to say out loud, "I am grateful for the healing I have achieved so far."
I am grateful for the healing I have achieved so far. And it's just beginning.
RSS Feed