I am such a sucker for New Year's. Not for the all-night drunk-a-thon, or Dick Clark and Times Square. I'm a sucker for wiping the slate clean, setting resolutions, sweeping out the old and welcoming the new. I get all excited about making promises to cook healthfully, to throw out all the stuff cluttering up my house and my life, to learn new skills, to organize my music catalog.....blah, blah, blah. We can be anyone we want, do anything we want, we simply must resolve to do it! It's so hopeful to feel like anything is within our reach and that we are all masters of our own destinies.
So this being my own little season of hope, it's somewhat fitting that I'll undertake my helminthic journey just as a new year begins. But I'm also keenly aware of the fact that the complete lack of control--of my bowels, of my time, of my life!--is what makes having UC so hard.
The feelings I am having right now about all this are so familiar. I'm so hopeful that THIS TIME things are going to be different. This time, I'm going to feel better, get stronger, and leave my meds behind. I'm trying to remember that maybe it won't work, that maybe nothing will change for me, but the other side of that coin is that maybe EVERYTHING will change for me!
The realistic (maybe a little optimistic) hope is that my treatment will help me quit a couple of my meds and maybe reduce the others. That it will make mornings a little more predictable. And that I can stop carrying around my emergency kit of clean undies and baby wipes.
But if EVERYTHING changes, maybe I can run a few races this summer. Maybe I can actually plan on exercising in the mornings. Maybe I can be med-free. Oh my God, I haven't been med-free since 1997. The closest I've been is, I think, 9 pills a day. I'm getting jittery and excited right now just thinking about it.
My ultimate hope for the new year is that I do in fact reach a full remission. But barring that, my hope is that, at least for 2011, I can find peace no matter where I'm at, health-wise. Because sometimes it's the struggle and the searching that wear me down the most. So even if I can't get better with my friends the whipworms, maybe I can at least accept the things I cannot change. For a little while.
Hmmmm. That sounds like a reasonable strategy, but when the rubber hits the road, I'm probably way too Type A for that kind of Zen. But it's New Year's! A time when all things are possible, changes can be made, we can become whatever we want--all we need is resolve!
Happy New Year, everyone!
Friday, December 31, 2010
Sunday, December 19, 2010
Christmas Blessings
Greetings, fair reader! In a nod to the season, it's time for some good old-fashioned holiday schmaltz! It's Christmas--a good time to take stock, count one's blessings, and consider your hopes and dreams for the coming year.
I don't really think of myself as some kind of Pollyanna, but whenever I feel a little down, I try to be really mindful of what is going right in my life. Having a chronic illness can make me feel so "woe-is-me" that it's important to counter that with some positive thinking. To wit....
This week, a friend of mine landed in the hospital because of her Crohn's disease. After months of unrelenting pain, weight loss, and failed treatments, including what may have turned out to be a needless surgery, she has now spent four days (and counting) in the hospital. She doesn't know what the future holds for her health, her job, her plans to go back to school, or even for her plans to spend the winter snowboarding. Where's the blessing in this? Well, I thank God (or whomever) that she is getting some help, and hopefully, finally, some relief. I'm thankful that I know her and have personally witnessed such strength. The phrase "tough as nails" was invented to describe this woman. And, selfishly, I'm thankful that it isn't me in the hospital!
I've been blessed by my connections to CCFA (Crohn's & Colitis Foundation of America). In addition to offering me one of the best experiences of my life (the Team Challenge half marathon fund-raising program), by working for CCFA as the Rocky Mountain manager of the Take Steps charity walk program, I got to meet some of THE BEST people ever, most of whom know exactly what it is to struggle with these dumb diseases every day. I have had access to the best gastroenterologists not just in Denver, not just in Colorado, but around the country. I have met pharmaceutical reps who really care about the patients, who have actually personally gone to bat for me when making decisions about my treatment, even when it meant dropping the medication they represent. (yeah. Seriously!) Thanks to CCFA, I am much more educated about inflammatory bowel diseases and their treatments and have had multiple opportunities to do something positive in response to them. So here's my plug: if you or someone you know suffers from Crohn's or UC, please, please, please get connected with CCFA and attend a support group, or check out their archived webinars on their website, or participate in their fund-raising efforts that are bringing about real change for people with IBD.
I've also been blessed with the financial wherewithal to deal with my illness. I have really good health insurance, but even so, my monthly share of just one of my many medications is $250. Never as I have made decisions about my treatment options have I had to seriously factor in the cost, whether it be for medications, special protein shakes, over the counter supplements, prescription pro-biotics, acupuncture, or now, helminthic therapy. This is so huge and something that so many people don't take into account when they consider what it is to have a lifelong disease. Even among my friends with IBD, I think it's funny how we are so open about the intimate details of our bowel movements, but we never seem to talk about the toll IBD takes on our wallets.
Most of all, I have been blessed with a huge circle of family and friends who support and encourage me, ask after my well-being, make donations on my behalf to CCFA, and literally and figuratively "show up" every time I need them, even when I think I don't. They know I appreciate them, in what I suspect is mostly an abstract kind of way, but I don't think they know, for instance, that I literally tear up every time I think about them, or that on my worst days, it's my gratitude for TEAM NANCY that pulls me out of my self-pity so I can just get on with it. I try to pay it forward, by acting on the knowledge that any small kindness I show someone else might, to them, be so meaningful. But c'mon, the truth is, I've seen so much generosity shined on me that I'll never pay it all back, or forward, or sideways, or any other way.
As for hopes and dreams for 2011....well just like everyone else, I have the same boring old resolutions, like finally losing that extra 10 pounds or cleaning out my basement or getting my retirement picture in order. But as I stare down that little vial of whipworm ova in early January, I'll be pinning a lot more hope on those little fellas. The hope that I will feel "normal" for the first time in a long time. The hope that my calendar won't revolve around where I am in my Remicade treatment cycle ("Nope. That weekend would be a bad time to take a trip to the mountains because I will be 1 week out from my Remicade infusion and therefore won't be more than 50 steps from a bathroom at any given time.") I hope I can go back to running a little bit, which makes me feel strong, healthy, and focused. I hope I will find a new supportive work environment that keeps me hopping mentally but doesn't stress me out so bad I get sick again. And I hope that as it comes down to counting my blessings at this time next year, I have at least as many as this year, and possibly many more!
I don't really think of myself as some kind of Pollyanna, but whenever I feel a little down, I try to be really mindful of what is going right in my life. Having a chronic illness can make me feel so "woe-is-me" that it's important to counter that with some positive thinking. To wit....
This week, a friend of mine landed in the hospital because of her Crohn's disease. After months of unrelenting pain, weight loss, and failed treatments, including what may have turned out to be a needless surgery, she has now spent four days (and counting) in the hospital. She doesn't know what the future holds for her health, her job, her plans to go back to school, or even for her plans to spend the winter snowboarding. Where's the blessing in this? Well, I thank God (or whomever) that she is getting some help, and hopefully, finally, some relief. I'm thankful that I know her and have personally witnessed such strength. The phrase "tough as nails" was invented to describe this woman. And, selfishly, I'm thankful that it isn't me in the hospital!
I've been blessed by my connections to CCFA (Crohn's & Colitis Foundation of America). In addition to offering me one of the best experiences of my life (the Team Challenge half marathon fund-raising program), by working for CCFA as the Rocky Mountain manager of the Take Steps charity walk program, I got to meet some of THE BEST people ever, most of whom know exactly what it is to struggle with these dumb diseases every day. I have had access to the best gastroenterologists not just in Denver, not just in Colorado, but around the country. I have met pharmaceutical reps who really care about the patients, who have actually personally gone to bat for me when making decisions about my treatment, even when it meant dropping the medication they represent. (yeah. Seriously!) Thanks to CCFA, I am much more educated about inflammatory bowel diseases and their treatments and have had multiple opportunities to do something positive in response to them. So here's my plug: if you or someone you know suffers from Crohn's or UC, please, please, please get connected with CCFA and attend a support group, or check out their archived webinars on their website, or participate in their fund-raising efforts that are bringing about real change for people with IBD.
I've also been blessed with the financial wherewithal to deal with my illness. I have really good health insurance, but even so, my monthly share of just one of my many medications is $250. Never as I have made decisions about my treatment options have I had to seriously factor in the cost, whether it be for medications, special protein shakes, over the counter supplements, prescription pro-biotics, acupuncture, or now, helminthic therapy. This is so huge and something that so many people don't take into account when they consider what it is to have a lifelong disease. Even among my friends with IBD, I think it's funny how we are so open about the intimate details of our bowel movements, but we never seem to talk about the toll IBD takes on our wallets.
Most of all, I have been blessed with a huge circle of family and friends who support and encourage me, ask after my well-being, make donations on my behalf to CCFA, and literally and figuratively "show up" every time I need them, even when I think I don't. They know I appreciate them, in what I suspect is mostly an abstract kind of way, but I don't think they know, for instance, that I literally tear up every time I think about them, or that on my worst days, it's my gratitude for TEAM NANCY that pulls me out of my self-pity so I can just get on with it. I try to pay it forward, by acting on the knowledge that any small kindness I show someone else might, to them, be so meaningful. But c'mon, the truth is, I've seen so much generosity shined on me that I'll never pay it all back, or forward, or sideways, or any other way.
As for hopes and dreams for 2011....well just like everyone else, I have the same boring old resolutions, like finally losing that extra 10 pounds or cleaning out my basement or getting my retirement picture in order. But as I stare down that little vial of whipworm ova in early January, I'll be pinning a lot more hope on those little fellas. The hope that I will feel "normal" for the first time in a long time. The hope that my calendar won't revolve around where I am in my Remicade treatment cycle ("Nope. That weekend would be a bad time to take a trip to the mountains because I will be 1 week out from my Remicade infusion and therefore won't be more than 50 steps from a bathroom at any given time.") I hope I can go back to running a little bit, which makes me feel strong, healthy, and focused. I hope I will find a new supportive work environment that keeps me hopping mentally but doesn't stress me out so bad I get sick again. And I hope that as it comes down to counting my blessings at this time next year, I have at least as many as this year, and possibly many more!
Friday, December 17, 2010
Welcome!
First time visiting this site? Welcome!
Let me orient you a little. First, I want to point out that it's all about UC and IBD here. And I know that can get a little boring, believe me. But I specifically created this blog as a place to put all my ulcerative colitis "stuff" so that I might have a chance of creating a little UC-free space in my real life.
So if you want to hear about the other aspects of my life, like how much I love to cook and watch reality t.v. (not necessarily at the same time), or my struggles to find just the right haircut, or my thoughts on what makes the perfect cup of coffee, or how I like to spoil my dog, my husband and my cat (in that order), you'll have to talk to me in person or on Facebook or whatever. But if you're interested in what's new in my own battle with UC, well, this is your first stop.
More specifically, this blog is about the pursuit of a new, relatively untested treatment for UC: helminthic therapy. Also known as whipworm parasite, I'm planning to introduce 1,000 ova of these little fellas to my system in January in hopes they will be a game-changer in my ongoing slog against this stupid disease. I'll be using this space to document my progress on this treatment for other folks who are thinking of pursuing this course of action.
Please note that under "For your information" I've included some links to what I think are some really good resources on the topic of IBD, including a couple of folks who are also keeping blogs about their experiences with helminthic therapy. I'd like to point out that most of these people are waaaaay more versed on the in's and out's of this treatment than I am, so I trust a lot of what they have to say. Plus, there's even a link to a recent allusion to IBD on Jon Stewart's Daily Show on the Colon Comrades site. We're going big time now!
Now that you know a little about the site in general, I'll just post a quick update on my status. It's been a lousy week. I had a really rough night on Monday, when I was woken from a sound sleep with the realization that needed to get to the bathroom RIGHT AWAY and then didn't quite make it. So there I was, in the middle of the night, cleaning myself up, and then when I got back to bed, I was lying there tensed up with abdominal cramps and the lingering sense that should I fall back to sleep, I just might find myself making another mad dash.
So. Tuesday was spent on the sofa all day, desperately consuming all the fluids I could, and trying to catch some sleep between more trips to the bathroom. It's gone steadily up from there, but still, as of yesterday, I was feeling vaguely achy and flu-ish, which usually means I'm having trouble staying on top of the dehydration game. So I continue to try to remember to drink, drink, drink.
In this last week before Christmas, I'm hoping for a steady increase in well-being so I can participate fully in all the HO-HO-HO that will be going on. That, plus a little more snow, would be just the ticket for a happy holiday!
Let me orient you a little. First, I want to point out that it's all about UC and IBD here. And I know that can get a little boring, believe me. But I specifically created this blog as a place to put all my ulcerative colitis "stuff" so that I might have a chance of creating a little UC-free space in my real life.
So if you want to hear about the other aspects of my life, like how much I love to cook and watch reality t.v. (not necessarily at the same time), or my struggles to find just the right haircut, or my thoughts on what makes the perfect cup of coffee, or how I like to spoil my dog, my husband and my cat (in that order), you'll have to talk to me in person or on Facebook or whatever. But if you're interested in what's new in my own battle with UC, well, this is your first stop.
More specifically, this blog is about the pursuit of a new, relatively untested treatment for UC: helminthic therapy. Also known as whipworm parasite, I'm planning to introduce 1,000 ova of these little fellas to my system in January in hopes they will be a game-changer in my ongoing slog against this stupid disease. I'll be using this space to document my progress on this treatment for other folks who are thinking of pursuing this course of action.
Please note that under "For your information" I've included some links to what I think are some really good resources on the topic of IBD, including a couple of folks who are also keeping blogs about their experiences with helminthic therapy. I'd like to point out that most of these people are waaaaay more versed on the in's and out's of this treatment than I am, so I trust a lot of what they have to say. Plus, there's even a link to a recent allusion to IBD on Jon Stewart's Daily Show on the Colon Comrades site. We're going big time now!
Now that you know a little about the site in general, I'll just post a quick update on my status. It's been a lousy week. I had a really rough night on Monday, when I was woken from a sound sleep with the realization that needed to get to the bathroom RIGHT AWAY and then didn't quite make it. So there I was, in the middle of the night, cleaning myself up, and then when I got back to bed, I was lying there tensed up with abdominal cramps and the lingering sense that should I fall back to sleep, I just might find myself making another mad dash.
So. Tuesday was spent on the sofa all day, desperately consuming all the fluids I could, and trying to catch some sleep between more trips to the bathroom. It's gone steadily up from there, but still, as of yesterday, I was feeling vaguely achy and flu-ish, which usually means I'm having trouble staying on top of the dehydration game. So I continue to try to remember to drink, drink, drink.
In this last week before Christmas, I'm hoping for a steady increase in well-being so I can participate fully in all the HO-HO-HO that will be going on. That, plus a little more snow, would be just the ticket for a happy holiday!
Wednesday, December 8, 2010
Worms in the news
Last week was a big week for my friends the helminths. They got some great PR when Scientific American published an article about the use of parasitic worms in treatment of autoimmune disorders. Then, NPR picked the story up, giving this treatment even a little more mainstream exposure on All Things Considered on December 2nd. (Thanks, by the way, to everyone who contacted me to let me know they heard about the worms on the radio! That was awesome to know that so many people have been keeping their eyes and ears open on this.)
What was really cool about these stories, from my point of view, is that the subject was an ulcerative colitis patient who treated himself with whipworms. This is one of the few people I have heard of who have my same disease and used the same treatment I am seeking. In fact, the company I am working with on this tells me I am probably going to be patient number 25 or so. (Notably, one of those folks is a fella who writes the Colon Comrades blog. I encourage you to check it out.)
So often, research and new treatments for IBD involve Crohn's disease first, and those of us with UC are left to extrapolate results from there. Truth is, although related, these are very different diseases in ways we don't quite understand yet. Of course, Crohn's is so nasty that if I had to choose, I would definitely stick with UC, but still, I feel like a little left out sometimes when it comes to attention to my own ailment.
Also of interest are the findings of the researcher, P'ng Loke. Basically, he describes the function of the whipworms as catalysts for ramping up mucus production in the colon by stimulating production of interleukin-22 (IL-22), while suppressing an inflammatory molecule, interleukin-17 (IL-17.) That's a little bit different than the descriptions I've heard, stating that whipworms give your immune system an appropriate invader to focus on, rather than attacking itself. Also interesting about this study is that it looks like the worms affect the areas of the colon where they take up residence, but not necessarily the colon as a whole. I have what's referred to as "left-sided" colitis because it's in my--you guessed it--left side, so I sure hope the little fellas will know exactly where to go!
No doubt, I am fascinated by all this stuff, but when push comes to shove, truth is I want to just forget I've ever heard of ulcerative colitis, if only for a little while. That's why I'm really excited to get my treatment with whipworms. Late last week, John and I booked our tickets to pick up my worms on January 6th! Given that the treatment can take about 8-10 weeks to work, I am hopeful that by my next birthday on April 8th, I will be seeing some improvement. Just in time for spring running season! Sweet!
Lots of people have warned that I may not see full remission from this treatment, or even any results at all. That's why I've tried to keep my expectations under wraps a little. I am hopeful that I can significantly reduce my meds, starting with prednisone, then maybe Remicade, and hopefully also azathioprine. And I'd love it if my symptoms got just a little bit better. If my mornings were not such a roller coaster ride of several emergency trips to the restroom. If I could actually enter a public place without immediately noting where the restroom is. If I could stop having in the back of my head the possibility that I will spend at least one day a month bedridden from fevers, chills, abdominal cramps, etc. Does that seem like so much to ask of my wormy little friends? I think not!
What was really cool about these stories, from my point of view, is that the subject was an ulcerative colitis patient who treated himself with whipworms. This is one of the few people I have heard of who have my same disease and used the same treatment I am seeking. In fact, the company I am working with on this tells me I am probably going to be patient number 25 or so. (Notably, one of those folks is a fella who writes the Colon Comrades blog. I encourage you to check it out.)
So often, research and new treatments for IBD involve Crohn's disease first, and those of us with UC are left to extrapolate results from there. Truth is, although related, these are very different diseases in ways we don't quite understand yet. Of course, Crohn's is so nasty that if I had to choose, I would definitely stick with UC, but still, I feel like a little left out sometimes when it comes to attention to my own ailment.
Also of interest are the findings of the researcher, P'ng Loke. Basically, he describes the function of the whipworms as catalysts for ramping up mucus production in the colon by stimulating production of interleukin-22 (IL-22), while suppressing an inflammatory molecule, interleukin-17 (IL-17.) That's a little bit different than the descriptions I've heard, stating that whipworms give your immune system an appropriate invader to focus on, rather than attacking itself. Also interesting about this study is that it looks like the worms affect the areas of the colon where they take up residence, but not necessarily the colon as a whole. I have what's referred to as "left-sided" colitis because it's in my--you guessed it--left side, so I sure hope the little fellas will know exactly where to go!
No doubt, I am fascinated by all this stuff, but when push comes to shove, truth is I want to just forget I've ever heard of ulcerative colitis, if only for a little while. That's why I'm really excited to get my treatment with whipworms. Late last week, John and I booked our tickets to pick up my worms on January 6th! Given that the treatment can take about 8-10 weeks to work, I am hopeful that by my next birthday on April 8th, I will be seeing some improvement. Just in time for spring running season! Sweet!
Lots of people have warned that I may not see full remission from this treatment, or even any results at all. That's why I've tried to keep my expectations under wraps a little. I am hopeful that I can significantly reduce my meds, starting with prednisone, then maybe Remicade, and hopefully also azathioprine. And I'd love it if my symptoms got just a little bit better. If my mornings were not such a roller coaster ride of several emergency trips to the restroom. If I could actually enter a public place without immediately noting where the restroom is. If I could stop having in the back of my head the possibility that I will spend at least one day a month bedridden from fevers, chills, abdominal cramps, etc. Does that seem like so much to ask of my wormy little friends? I think not!
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