I am always amazed at myself when I take a months-long break from updating this blog. After all, it's not that nothing's going on in the life of my diseased colon. Usually, it's that I am frickin' sick and tired of paying attention to it, so I sort of bury my head in the sand and don't write about it. But the truth is, that doesn't really make it go away. In fact, I started this blog as a way to journal about my ups and downs in the hope that by giving a time and a place to my stupid disease, maybe the rest of my life wouldn't be so overwhelmed by it. So, now that we're in a New Year, I think it's time to get back to that coping strategy.
Let's get started by doing a little catching up on the last few months:
--I took a short-term job in August that lasted through mid-November. It was a great test-run for my work-readiness, and especially for my ability to deal with the stress. I'm pleased to report it went pretty well. I had my good days and bad, to be sure, but I was mostly able to keep my UC from impacting my work. It took lots of planning, patience, and flexibility, but I definitely count that experience as a "win."
--In December, John brought home another insurance bomb from his employer. They announced, a week before Christmas, that on January 1 they would be going to another insurer. We had until the end of January to choose among, like, 15 different plans, and if we incurred any expenses between January 1 and when we made our choice, we would be reimbursed. Which, I think, was probably a pretty good deal for most people, but what about me, who had a Remicade infusion scheduled for the first week of January? The retail cost of this fun little treatment is over $5,000--who among us is prepared to just put that on the ol' credit card and trust you'll be reimbursed? I will spare you all the ugly details of trying to figure this out, but trust me, they are indeed pretty ugly. The upshot is I stayed on track with my treatments, and I currently have a charge for over $3,600 on my credit card and am awaiting reimbursement, which will hopefully come before my payment is due in a few weeks. Fingers crossed!
--Lest anyone think I harbor ill will toward John's employer over any of my insurance problems, I want to make clear that my beef is with the entire concept of tying health care to our employers. This approach adds way too many layers of administration and paperwork, and its basic assumption is that health care is not a right we should all enjoy, it is a "perk" that employers can offer their employees, like free parking or working from home. If you don't think that's ridiculous, let's just look at how the Catholic Church thinks it should be able to deny its women employees access to birth control medication, despite the laws of the land that clearly state otherwise. Why should any employer have a say in such a choice? But I digress....
--Meanwhile, I was realizing it was definitely time to check on those little wigglers in my belly and see what's going on in there. I had an inkling that this extended experiment was not working out, but the only way to know for sure was to hand over some poop to a lab and let them see if there was any evidence of the little fellas in there. I finally did this at the end of December, and (drum roll, please) discovered that round two of the whipworms failed. (Wah-wah.)
I have such mixed feelings about all of this, but truly, my biggest disappointment is in my "provider," AIT. My suspicion is that the worms they gave me were never viable in the first place--emphasis here is on "suspicion." I haven't felt like taking that line of questioning up with them, but when I discovered that the worms didn't survive, I emailed just to let them know. I was very clear that I just wanted to inform them of this outcome and that I thought they would like to know this as part of their record-keeping on their success rate. I asked them to respond to my note and let me know if they would like me to send a stool sample to them directly for testing, or if they wanted to ask me any other questions about my experience. I didn't hear a word. So, although I know lots of people have had a great experience with Jasper and Marc at AIT, I have to say that I have not been so pleased. I would just encourage anyone who is considering this treatment to do a lot of research, and make sure they are confident in their provider before they pull the trigger. I don't regret my choices, not in the least. But, should I go down this road again, things will definitely be different.
--My GI doc is getting sick and tired of me. Last time I saw him, he was not particularly happy that I weaned myself off my prednisone. He definitely didn't support my desire to drop the Remicade infusions, or even to space them out more. And he's a little frustrated with the fact that I'm having trouble sticking to the dosing schedule of 2 suppositories and 1 foam enema/day that he is recommending. To that last item, I just have to say, it may seem like a fairly small thing to give yourself these treatments, especially if they might help you feel better. But it only seems like no big deal to people who haven't tried sticking medication up their butt three times a day, everyday. All while knowing you may need to do this forever. Sigh.
--I felt pretty good through the holidays, and certainly did my part to eat, drink and be merry. But by the time New Year's Day came around, I just felt....gross. Lazy. Doughy. Generally unhealthy. So, I decided to join in the 21-Day Kickstart program with the Physicians Council for Responsible Medicine (PCRM). This is a 21-day diet plan to turn your health around by adopting a plant-based diet. Good-bye, cookies, tacos, and heaping plates of pasta. Hello, fruits, veggies, and whole grains. It took only a few days to get over the ill effects of too much "ho, ho, ho," and despite my worst fears, giving up all animal-based foods was not nearly the sacrifice I thought it would be. But, I think because this is a very high-fiber way of eating, my digestive tract did not love this plan as much as it could. I made it through the 21 days by adjusting the fiber intake downward a little, and am still staying pretty true to the plan--probably about halfway between my old dietary habits and the ultra-strict vegan guidelines of the Kickstart. I plan to write more about this, probably over on the "How I See It" blog, so if you're interested in reading more, click on over there.
--Just to make sure I didn't get too cocky, feelin' all good, eatin' all that fiber, exercisin' like Jane Fonda in the '80s, my tummy has been in an UPROAR this week. I've had abdominal pain like I can't describe. Really awful gas. And urgent, urgent trips to the potty that often leave me stuck in the loo for a long, long time. No mouth sores, or skin lesions, or fevers--thank Buddha. But it has not been an auspicious beginning to February. Yesterday seems to have been the peak; I'm doing much better today, but UGH. Just a reminder that this disease can be rough goin' sometimes. (By the way, I had wondered what would become of my vegan ways if and when my next flare came along, and I'll just say that dinner last night was a bowl of chicken noodle soup. Comfort food still trumps veganism under these circumstances.)
So that's my world in a nutshell for the last several months. It's really the same old, same old, don't you think? Insurance quandries, crazy new diets, disagreeing with my doc, and being disappointed by alternative therapies. All against the backdrop of difficult GI symptoms. Good lord, the monotony is so B-O-R-I-N-G, isn't it? Well, I remain ever hopeful that it won't be this way forever. I'll get back to remission and won't believe my incredible luck at feeling good, eating well, and living a healthy, normal life! The only question is WHEN?
