I am reminded today that just because I have these awesome little creatures doing their best to bring my immune system under control, I am NOT off the hook for doing MY best to bring my immune system under control. That is to say, I am still responsible for taking care of myself; I have not abdicated that responsibility just because someone else is on the job.
To explain: I just came home from a long weekend with friends in the mountains. And although we sell it to ourselves as four days of playing in the snow, the truth is (for me, at least) that it is an extended opportunity to eat, drink, and shun sleep in favor of booze-fueled late night snowshoe expeditions. I don't want to make it sound like I run with a pack of gluttons, but the truth is, we love good food, good drink, and each other enough to spend days on end indulging ourselves, with breaks in the action for a little skiing, a little sledding, a little snowshoeing, etc.
I was nervous about this trip. I had no idea how my tummy would deal with all the mayhem I was about to throw at it. I was worried how I would do in a house of 16 adults, 8 kids, and 7 dogs (and three bathrooms.) Add to that the fact that my safety net, John, wouldn't be there, and I was not sure what to expect. But for the most part, my delicate system dealt pretty well. Sure, my tummy hurt pretty much the whole time, I passed a fair amount of blood every time I went to the bathroom, and I felt the need to back off some of those outdoor activities, given the uncertain proximity to the loo. But there were no "urgency emergencies," I didn't have to jump out of bed in the morning to run to the bathroom once, and I even got to enjoy my morning coffee without much ado.
And now, I ask you to re-read that paragraph and tell me what's wrong here. Go ahead. I'll wait while you re-read it.
Done? OK, so did you notice that my whole attitude was about what my tummy did to me to make my life a challenge and not at all about what I did to make life hard on my tummy? Let's start with the most obvious: food. Who in their right mind thinks they can eat two Thanksgiving-sized meals a day, plus plentiful snacks, without repercussion? And really, I shouldn't be chugging the amount of coffee that I did on this trip, but it seemed like the thing to do, especially since I was chronically tired from going to bed a little too late and tossing and turning a bit due to the stomach cramps. Which brings up the issue of sleep: I know as well as I know my own name that getting too little sleep, and especially in a "travel" situation, is asking for trouble. At least I was smart enough to not put myself in the situation where I would need to find a bathroom ASAP out in the middle of a snowshoe hike, but maybe there would not have been any reason to fear that if I had not filled my system with lots of rich foods, a fair amount of beer, and plenty of salty/sweet snacks.
Given all this, I'm pleased that I survived the weekend OK, but the uncanny thing is that I was not 15 minutes into the hour and a half ride home before I had to find a bathroom ASAP. The poor ladies at the gas station were totally startled as I came flying into the store and flung myself down the hall to the restroom, where I locked myself for a good 10 minutes. I got home fine after that, but my whole afternoon was one trip to the bathroom after another until I finally fell asleep on the sofa. Sometimes, my body gives me a break when it needs to, but the bill always comes due.
So I got my come-uppance (and I'm still getting it today, unfortunately.) And even though I know this already, I am reminded oh-so-vividly that I am still responsible for taking care of myself, and my whipworms are just one tool I have to do that. I still need to watch what I eat, get a decent amount of exercise, and heed my body's cries for ample sleep. If I don't do these things, or at least make a good faith effort, it will not matter how many pills I take, how many Remicade infusions I get, or how many helminths I have burrowing into my colon--I will still be sick. It's just a reminder that the Union is a team, we're all working toward the same goal, and it's no fair if I sabotage the team's effort by not controlling the things I--and only I--can.
The next time I'm indulging myself (and let's face it: there WILL be a next time) I'm going to remind myself that as much as I love good food, good drink, and good times with good friends, there is no free lunch. You're gonna pay, and maybe, just maybe, it's better to pay upfront by missing out on a few big meals, a couple of tasty beers, or a couple of late nights than it is to make life that much harder on the Union.
Wednesday, February 23, 2011
Thursday, February 3, 2011
Breaking Up is Hard to Do
Yesterday I had my first check-up with my GI doc since inoculating (is that the right word?) myself with 1,250 whipworm ova. To say that he is not supportive of this treatment would be, well, putting it mildly. When I first discussed it with him last fall, he kept coming back to the same line: "But it's a PARASITE! You'll have a PARASITE!" So I knew going in to this appointment that this was going to be a tough conversation.
Part of me thought that even though he can't really get behind this, he should at least be intrigued by the possibilities, and since I had already done the deed, he'd be interested to see what happens. But he really wasn't. His immediate reaction was to ask about all my meds and current symptoms, becoming concerned when I told him I've had an uptick in my symptoms and actually increased my prednisone. His thought is that because I am so immuno-compromised through my meds, the introduction of the parasite is going to render me completely unable to fend off even the most minor of infections. (To which I say, how come I haven't had so much as a sniffle while John has been fending off one lousy cold after another this winter? Why aren't all the scrapes and scratches I keep getting from trying to keep Scooby the cat entertained turning into raging, pus-y infections?)
Anyway, I told him that first and foremost, I wanted him to know that if he is uncomfortable continuing as my doctor, that's fine, and he should just tell me and I'll move on. He said no, he's not going to toss me out, but now that I've "gone and done this to myself," his main job is to protect me and look out for potential problems. Meanwhile I'm thinking, "What about the potential remission? What about the potential upside?" But he just doesn't see it.
Through the course of conversation, I realized that even if I have a miraculous recovery, he will not believe it's due to the parasites. "It's a totally uncontrolled experiment," he says. "Maybe you would have just gotten better on your own anyway." Now, I ask you, my friends, how likely is it that I would have a spontaneous remission on the exact same medical regimen I have been on for more than a year? I just felt like this is crazy talk. I don't think you have to be a "man of science" to see that just doesn't make any sense.
But I get where he's coming from. This is a guy with a background in clinical research. He has a lot of respect for that process, and told me that even when new drugs go through this incredibly rigorous process of clinical trials and FDA approval, they could still turn out to be dangerous. (Hmmm....like, say, Remicade?) He says that he's not giving this, or any other alternative treatment, a knee jerk negative reaction; he just holds everything--drugs, acupuncture, probiotics, dietary changes, etc.--to the same standard of proof that it works and is safe. He also just can't understand why us "lay people" (I think he means "patients," you know, the people who deal with this crap every single day) are so drawn to "natural" treatments when they can be more harmful than anything put forward by Western medicine.
That was the comment that pushed my buttons the most. I just burst and said, "Look. It's not that I don't respect Western medicine. I've had this disease since 1997 and in that time have tried every single medication my doctors have suggested. But in the last two years, my disease has become less manageable while my options have diminished. I have sat with you in this very exam room every three months begging for ideas of what to try next, and you have nothing to offer. I even advocated for a higher dose of Remicade at more frequent intervals, which you originally balked at. So don't make it sound like I don't want to give what you're peddling a chance. Now I'm at the top end of the dosage for this risky medication that isn't working anymore and you can't understand that I'm looking elsewhere.
"And another thing: don't tell me that just because it has FDA approval and is administered in a nice shiny clinic by well-trained nurses that Remicade is not just as much a roll of the dice as infecting myself with a parasite. In my case, Remicade is a roll of the dice that we know isn't working anymore. Jury's still out on the parasites."
OK, so, my rant wasn't anywhere near that articulate, and there was a little bit of sniveling in there as I tried to get my emotions under control, but I think he was pretty clear on where I stood.
So where do we go from here? Well, as I was leaving, I didn't say that I was LEAVING, but I am seriously thinking about pulling up stakes and moving on. In the meantime, he is consulting colleagues with experience in infectious diseases to see what other systemic dangers I am exposing myself to. I offered (twice) to connect him with the web resources I have been using to gather my info about this treatment, just so he can see where I am coming from, but he's not interested in my internet hoo-ha (my words, not his.)
Problem about moving on is it's not easy to find someone who is a good fit. I want a good GI who is up to date on all the Western medicine stuff, and who will work with me as I go through this other treatment and whatever else might come down the pike. They don't have to be all for it, but it would be nice if they were at least a little bit curious and hopeful about the potential outcome rather than focusing solely on what can go wrong.
Through my work with CCFA, I'm lucky to have met a lot of really great local GI's and I've talked "offline" to a handful of them about this treatment, if only in very hypothetical terms. I did find one who seemed very intrigued, but unfortunately, his practice is about 75 miles from my home, so that doesn't seem very practical. Because this treatment doesn't have the blessing of the medical establishment, it's hard to know what a doc might really think about it until you get behind closed doors with them. One guy I know, a fellow "helminther," suggested that those who find a "worm-friendly" GI mark their doorways with an X or something so the rest of us will know who's OK. Kind of an "underground railroad" for helminthic therapy.
Since it's not really practical to go looking around doctors' doorways for X's either, I will probably start making some appointments to interview prospective docs in the next few weeks. And though I really want to find a good GI, I will probably expand my search to include a few naturopaths or other practitioners who might be more open to looking at the whole picture. (My mother, the RN, is probably spinning in her grave at the very idea.) We also have a center for integrative medicine here in town--maybe I'll give them a call and make an appointment.
But I do know for sure that life is too short for me to spend any more time with someone who's not behind me and my quest to feel better. Breaking up may be hard to do, but it's not as hard as beating your head against the wall.
One more note just for my friends and family: So many of you are so super-supportive, it gives me the strength to know I deserve better from my medical team, that is, the people who are actually getting paid to care about how I feel. But once in a while, you will use words like "inspirational" and "brave" to describe my fight, which makes me uncomfortable. To just let you know how inaccurate that description feels, this encounter with my doctor left me in tears not once, not twice, but three times. Once, in my car driving away from the office. Twice, recounting the highlights of the appointment to my dad. And thrice (Conan O'Brien would be so proud), explaining to John why I'm so frustrated. What would be brave, to me, would be to get over it and move on. To grab hold of this opportunity I'm giving myself to feel better, no if's and's or but's, and don't let anyone get in my way. But that's not what's happening. Until it does, I guess I'll just keep on keepin' on.
Part of me thought that even though he can't really get behind this, he should at least be intrigued by the possibilities, and since I had already done the deed, he'd be interested to see what happens. But he really wasn't. His immediate reaction was to ask about all my meds and current symptoms, becoming concerned when I told him I've had an uptick in my symptoms and actually increased my prednisone. His thought is that because I am so immuno-compromised through my meds, the introduction of the parasite is going to render me completely unable to fend off even the most minor of infections. (To which I say, how come I haven't had so much as a sniffle while John has been fending off one lousy cold after another this winter? Why aren't all the scrapes and scratches I keep getting from trying to keep Scooby the cat entertained turning into raging, pus-y infections?)
Anyway, I told him that first and foremost, I wanted him to know that if he is uncomfortable continuing as my doctor, that's fine, and he should just tell me and I'll move on. He said no, he's not going to toss me out, but now that I've "gone and done this to myself," his main job is to protect me and look out for potential problems. Meanwhile I'm thinking, "What about the potential remission? What about the potential upside?" But he just doesn't see it.
Through the course of conversation, I realized that even if I have a miraculous recovery, he will not believe it's due to the parasites. "It's a totally uncontrolled experiment," he says. "Maybe you would have just gotten better on your own anyway." Now, I ask you, my friends, how likely is it that I would have a spontaneous remission on the exact same medical regimen I have been on for more than a year? I just felt like this is crazy talk. I don't think you have to be a "man of science" to see that just doesn't make any sense.
But I get where he's coming from. This is a guy with a background in clinical research. He has a lot of respect for that process, and told me that even when new drugs go through this incredibly rigorous process of clinical trials and FDA approval, they could still turn out to be dangerous. (Hmmm....like, say, Remicade?) He says that he's not giving this, or any other alternative treatment, a knee jerk negative reaction; he just holds everything--drugs, acupuncture, probiotics, dietary changes, etc.--to the same standard of proof that it works and is safe. He also just can't understand why us "lay people" (I think he means "patients," you know, the people who deal with this crap every single day) are so drawn to "natural" treatments when they can be more harmful than anything put forward by Western medicine.
That was the comment that pushed my buttons the most. I just burst and said, "Look. It's not that I don't respect Western medicine. I've had this disease since 1997 and in that time have tried every single medication my doctors have suggested. But in the last two years, my disease has become less manageable while my options have diminished. I have sat with you in this very exam room every three months begging for ideas of what to try next, and you have nothing to offer. I even advocated for a higher dose of Remicade at more frequent intervals, which you originally balked at. So don't make it sound like I don't want to give what you're peddling a chance. Now I'm at the top end of the dosage for this risky medication that isn't working anymore and you can't understand that I'm looking elsewhere.
"And another thing: don't tell me that just because it has FDA approval and is administered in a nice shiny clinic by well-trained nurses that Remicade is not just as much a roll of the dice as infecting myself with a parasite. In my case, Remicade is a roll of the dice that we know isn't working anymore. Jury's still out on the parasites."
OK, so, my rant wasn't anywhere near that articulate, and there was a little bit of sniveling in there as I tried to get my emotions under control, but I think he was pretty clear on where I stood.
So where do we go from here? Well, as I was leaving, I didn't say that I was LEAVING, but I am seriously thinking about pulling up stakes and moving on. In the meantime, he is consulting colleagues with experience in infectious diseases to see what other systemic dangers I am exposing myself to. I offered (twice) to connect him with the web resources I have been using to gather my info about this treatment, just so he can see where I am coming from, but he's not interested in my internet hoo-ha (my words, not his.)
Problem about moving on is it's not easy to find someone who is a good fit. I want a good GI who is up to date on all the Western medicine stuff, and who will work with me as I go through this other treatment and whatever else might come down the pike. They don't have to be all for it, but it would be nice if they were at least a little bit curious and hopeful about the potential outcome rather than focusing solely on what can go wrong.
Through my work with CCFA, I'm lucky to have met a lot of really great local GI's and I've talked "offline" to a handful of them about this treatment, if only in very hypothetical terms. I did find one who seemed very intrigued, but unfortunately, his practice is about 75 miles from my home, so that doesn't seem very practical. Because this treatment doesn't have the blessing of the medical establishment, it's hard to know what a doc might really think about it until you get behind closed doors with them. One guy I know, a fellow "helminther," suggested that those who find a "worm-friendly" GI mark their doorways with an X or something so the rest of us will know who's OK. Kind of an "underground railroad" for helminthic therapy.
Since it's not really practical to go looking around doctors' doorways for X's either, I will probably start making some appointments to interview prospective docs in the next few weeks. And though I really want to find a good GI, I will probably expand my search to include a few naturopaths or other practitioners who might be more open to looking at the whole picture. (My mother, the RN, is probably spinning in her grave at the very idea.) We also have a center for integrative medicine here in town--maybe I'll give them a call and make an appointment.
But I do know for sure that life is too short for me to spend any more time with someone who's not behind me and my quest to feel better. Breaking up may be hard to do, but it's not as hard as beating your head against the wall.
One more note just for my friends and family: So many of you are so super-supportive, it gives me the strength to know I deserve better from my medical team, that is, the people who are actually getting paid to care about how I feel. But once in a while, you will use words like "inspirational" and "brave" to describe my fight, which makes me uncomfortable. To just let you know how inaccurate that description feels, this encounter with my doctor left me in tears not once, not twice, but three times. Once, in my car driving away from the office. Twice, recounting the highlights of the appointment to my dad. And thrice (Conan O'Brien would be so proud), explaining to John why I'm so frustrated. What would be brave, to me, would be to get over it and move on. To grab hold of this opportunity I'm giving myself to feel better, no if's and's or but's, and don't let anyone get in my way. But that's not what's happening. Until it does, I guess I'll just keep on keepin' on.
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