As I write this, it has been almost a year to the day that I walked out the door of my hotel for the last time and took the proverbial “jump off of a cliff” into the unknown. As I was walking the dogs this morning, I marveled at how a year could have passed already, and wondered where the time had gone and what, if anything I had accomplished. If you’ve read anything I have posted before this, you know “accomplishment” is something very important to me and, like it or not, something I use as a scale by which to rate myself. It may not be healthy, but it is what it is.
Of course, I am also painfully aware of some of the limitations that I have based on having Crohn’s for so many years, not to mention surgeries, etc; I have become much more sensitive to this over the last year, that is for certain. This time of year when the social engagements are many and my obligation to some of them is expected (work functions for my husband and I), I have found myself saying no to several of them to make sure that I’m not overextending myself. While I love a good party, I can’t drink because of the never-ending cycle of Flagyl that I’ve been on for the last seven years, it is stressful trying to prep for the event by not eating so I won’t need to constantly run to the bathroom, and I just don’t want to sacrifice what sleep I do get each night.
Anyhow, I’m getting a bit off track. As I look back, here’s how I spent the last year getting acquainted with my body and it’s Crohn’s-related demands:
I had deliberately delayed the start of my new part-time job until the beginning of January so that I could have about two and a half weeks off with my husband, who I hadn’t spent any real time with in months given our crazy schedules. I spent the last three weeks of December sleeping a lot. It was like my body couldn’t get enough rest – I was in bed by 10pm most nights and slept until 8 or 9am. I took naps. Part of that was due to the fact that I was in desperate need of an iron infusion and a blood transfusion, something I had used to do religiously every two months for the past six years, given my chronic anemia. I found a hematologist nearby and scheduled an appointment and received blood and iron. I hadn’t been to the dentist in a year, so I did that, too. My parents came out to visit for a few days before Christmas, which was great, and we flew to Boston for a few days to visit my husband’s family, but mostly, I slept.
Once January rolled around and my husband was back to work from his vacation, I started my part-time job, which was two days per week, doing much less stressful work. Still slept a lot on my days off, but for the first time I finally felt almost “caught up”, where I wouldn’t wake feeling as exhausted as I had going to bed the previous night. More iron infusions to boost the hemoglobin. As much as I wanted to start working out again, something that I hadn’t been able to do since we had moved to Texas given my schedule, the hematologist had advised waiting until my blood counts had stabilized and I wasn’t constantly dizzy or out of breath from the anemia. Probably smart. So I stuck to walking the dogs about three miles a day, enjoying the time outside. I rediscovered cooking, and took pleasure in being able to cook dinner for my husband and I each night. It wasn’t easy, being that I’m not the best cook and it had been quite a few years since I’d had any kind of time to regularly make meals.
The end of January brought sad, yet not unexpected news. After a steady decline in his health over the last two years, my father in law passed away at the age of 80. The call from my brother in law came late one night, and once again we flew to Boston for a week to attend to the funeral arrangements and to spend time with the family. I was so glad I was able to do that without having to fight a hectic schedule to get the time off. My husband needed me, and I was able to be there to support him, which meant a lot to both of us.
By the beginning of February, I felt strong enough to begin working out again, after getting clearance from the hematologist. I started jogging a bit, and did circuit training five or six days a week. It was hard to start up again and see how much my health had declined in the last year, but I kept at it and began to notice improvements in my mood, sleep and how I felt about my body. I kept up with my GI and hematologist appointments religiously, and my sleep patterns became more normal, more like 8 hours each night instead of 10. I still napped in the afternoon on my days off, which was such a foreign concept to me that I almost felt guilty. No, I did feel guilty. Here I was, working part-time and staying home several days each week to do what? We didn’t have kids (though our two dogs are very much my babies), so what was the purpose? I felt that I hadn’t “earned the right” to do this, and I struggled with that for several more months.
March was spent getting ready for a trip my husband had planned for my birthday in early April to Santa Fe. Neither of us had been before, and given that we were driving, the thought of 11 hours in a car with limited access to bathrooms was more than a little stressful. The elevation was a concern as well, so I got a few extra boosts of iron and blood before our trip to ensure I wouldn’t have more difficulty acclimating. I upped my cardiovascular workouts a bit to try and prep myself to do some hiking, which is something that both of us enjoy very much.
The drive out to Santa Fe in April went surprisingly well; we left very early in the morning, so I refrained from eating almost all day and just kept hydrated until we arrived. Not the most pleasant thing, for sure, but I did it and was proud of myself. While I had considered myself well prepared for the elevation change, a just-beginning-to-get-healthy body slightly above sea level doesn’t necessarily transition so easily to life at 10,000 feet. We didn’t get to do as much hiking as I would have liked, as I got winded too easily, so we stuck to doing long, leisurely walks around town, visiting galleries and eating lots of great food. We visited Ojo Caliente mineral springs, as I mentioned in an earlier post, which was a lovely way to spend an afternoon. It was a nice trip to have together, particularly since my husband hadn’t really had any downtime since his father had passed.
By the end of April, having returned from our trip, I decided it was time that I start strength training again to complement my cardio workouts. I signed up at a gym nearby and started slow, doing a basic routine three days a week for 45 minutes or so, and began to see improvements in my muscle tone within a few weeks. It was encouraging.
By May, I was starting to feel semi-normal, and had begun to work three days most weeks, a transition that was easy to make. I was gaining confidence that my body was almost back to normal. Not exactly. Sometime toward the middle of the month, I noticed I began to feel sluggish again. My blood counts were good, so it wasn’t that. A few days later, I woke with a familiar horrible aching all over my body and a fever of 103. Off to the ER we went, where I was diagnosed with pneumonia again; this was the second time within six months. Luckily, we caught it relatively early, so with a couple weeks of antibiotics and lots of rest, I was feeling myself again in a couple of weeks.
And then there was the summer. The summer that I have now deemed the “ER Extravaganza”, one in which, between the months of June and August, I visited the ER seven times with bowel obstructions and was admitted three of those times. I’m pretty well-versed on what I can and can’t eat after so many years of trial and error, so these weren’t simply a matter of me eating the wrong thing. That June, my GI and I had decided to begin to tweak my medications, given that I was having progressive neuropathy in my feet from so many years on the Flagyl. I would remain on the Humira, but we stepped down the Flagyl dose and began 6MP, another immunosuppressive medication commonly used to treat leukemia, to supplement it. I had been on the medication years before with mixed results (bone marrow suppression), so I went for weekly blood tests to monitor my TMPT levels to make sure I didn’t develop a toxic level of the drug. All was well until one week, where my hemoglobin counts went off a cliff and I dropped from 10 (which is fairly good for me) to 7. Turns out I didn’t have both enzymes needed to break down the 6MP, so the bone marrow suppression had returned. We stopped the drug, started another similar one, with the same results. I’m sure that this tweaking of the meds had something to do with the flare that consumed me over the summer, but it certainly wasn’t the GI’s fault. We had to do something. Each hospitalization only lasted a few days before my obstruction passed, and I was loaded up each time with several antibiotics and the devil’s brew – Prednisone. My poor husband. I don’t think it was a fun summer for him, either. With all of the obstructions occurring at the same point where CT scans had revealed I had some narrowing, my GI recommended a surgical consult. I really didn’t want to open up that can of worms again.
By the end of August, the GI and I had mutually agreed to put me back on the original Flagyl dose for the time being so my body could stabilize a bit. I needed to get well; my brother was getting married back in Philadelphia the following month and I needed to be healthy enough to make the trip. I made an appointment with a dietician, something I hadn’t done before, as the last hospitalization a couple of weeks before had also revealed that my electrolytes were severely out of whack and my potassium had dropped to a dangerous level. It seemed time to get some expert advice to see what I could do that wouldn’t be in the form of another pill. I got a lot out of that visit, which I have posted about earlier, and made a few changes to my diet which, overall was pretty healthy.
Three weeks of careful eating and lots of sleep later, we boarded a plane for Philadelphia for the wedding, and it was great being back home for the first time in a year and a half. It was an insanely busy week between family commitments and trying to catch up with old friends and colleagues, and I was careful to not to too much to throw my body off balance.
By the end of September we were back home in Texas, and I proceeded with the task of finding an appropriate surgeon to consult with at my GI’s recommendation. Not an easy feat, considering my rather checkered surgical past. A few weeks later I had narrowed my search down to one and made an appointment for the beginning of October.
The visit with the surgeon was a cautious one, with a lot of answers that I had expected. He was very reluctant to operate to remove scar tissue from the narrowed areas unless there was an emergency that dictated it must be done, given the risk that because of my history, complications like fistulas, infection and perforation were a good possibility. I understood and appreciated his cautiousness, but at the same time, I didn’t want to spend another several months bouncing in and out of the hospital and told him so. He requested a small bowel series, a test which is at best time-consuming and frustrating, and at its worst results in vomiting up lots of barium, pacing the halls wearing a hospital gown for hours while you wait for things to “move along”, and get so dehydrated and hungry that you feel like you will almost certainly physically harm the next person that passes by. I went through with the test in early November and it confirmed what he had already told me – the surgery would be too risky unless it was medically absolutely necessary, and at some point that will likely be the case. He told me he would be glad to operate on me when that time comes, and I sat down with my husband so we could put a plan in place should that happen, given that I would need to be transferred from our local hospital to a larger one downtown, where the surgeon is based.
At that point, since I had already met our insurance deductible single-handedly by the month of August, I decided it was time I revisit a chiropractor, as I had yet to find a good one in our area. I have relied on chiropractic care since my teen years and always found it helpful; my deep tissue massage therapist recommended a chiropractor that she worked part-time for that wasn’t far from my home. I made an appointment with him right away, and am so glad I did. This man is far more than a chiropractor – his background is in sports medicine, so the appointments are focused around your overall health and mobility rather than just fixing subluxations in the spine. During the first appointment he took x-rays of my spine, which I hadn’t had done before, and pinpointed the likely source of the constant, grinding pain in my lower back for the last six or seven years. Between two of my vertebrae, the disc that should have been there to cushion the daily impacts was essentially gone, likely a combination of aging, the tons of Prednisone I’ve been on over the years and all of the abdominal surgeries compromising my core strength. He prescribed a regimen at each appointment that begins with electrical stimulation and heat on my lower back for 10 minutes to loosen and relax the muscles, followed by a thorough adjustment that usually lasts about 15 minutes, during which a good deal of time is spent stretching out my lower back, and ends with 15 minutes of traction on the decompression table, where you are essentially strapped in to a straightjacket on a table and then a machine gently pulls your body to lengthen and create space between the vertebrae.
I’ve been going weekly since that first appointment and the results have been amazing. For about three days afterward, I have no pain in my lower back, which hasn’t happened in years, and is a huge improvement. Additionally, he took the time to evaluate my strength training regimen and recommend exercise substitutions for those that would put too much strain on my low back. While it’s been great that I haven’t had to pay any copay for these weekly appointments, once the New Year hits I’m still planning on going at least every other week for maintenance, as it has made such a difference in how my body feels. While it has only been a few weeks, I have to hope that this will have a positive impact on my overall health and maybe even some of my Crohn’s symptoms as well.
So there you have it. My Year in Review. I guess if you’re (and by you, I mean me) looking for “accomplishments”, there have been several. Giving my body plenty of rest, resuming my workout regimen and getting physically stronger, catching up with all my GI and Hematologist appointments, keeping my blood levels stable, keeping my husband from divorcing me despite months spent on massive doses of Prednisone, receiving a dietician consult to evaluate my eating habits, a surgical consult which now leaves me with peace of mind that, when the time comes, I have someone that can operate on me whom I know is familiar with my history and is qualified, and finding a chiropractor to enhance my overall health and wellness, combined with the efforts of my wonderful massage therapist whom I’ve seen religiously since moving here almost two years ago.
It really does take a village, and it takes a lot of time, thought and a consciousness and self-awareness that I know I didn’t have before this year began. So, to that end, I suppose I now need to evaluate what worked this year, what didn’t and what I would like to try and work on in 2015. Finally, I must note that absolutely none of this would have been possible without the amazing support of my husband George and my mother Wendy, both of whom have supported this journey whole-heartedly and without question. Their insights and opinions may not have always been well received (again, I’ll blame the Predisone as well as my general stubbornness), but have carried weight nonetheless.
It’s been quite a year, indeed.