Category Archives: Uncategorized

Am I Asking My Doctor the Right Questions?

Posted on by swollenmystery

After making the trip to see my rheumatologist this week for a 3 month return visit, I kept asking myself whether I asked all the right questions. Maybe it’s because my doctor is 2 hours away and it’s more difficult to make a last minute appointment. Or it could be that I tend to worry more than I should. Regardless of either, I choose to take autoimmune problems seriously. Especially when it comes to medicine. Over the past few months my knee swelling has slightly elevated while the pain has not. I went to my last appointment thinking overall my inflammatory arthritis has improved. But has it? My legs feel stronger. I can literally see more muscle growth in my upper legs and my workouts have progressed. But the flare ups continue with significant effusions above both knees. At the same time I continue to taper my dosage of Prednisone 1mg each month.

While talking with my doctor, he mentioned the possibility that my inflammatory spondyloarthropy may still progress and if the current medicines do not work he will consider stronger methods like TNF blockers. I fear biologics like the plague. And I’ll admit, I’m pretty skeptical of any medicine when there may be potentially harmful, long term side effects.

Since I still have no hard evidence of exactly what my condition is yet, it’s difficult to feel like I’ve made much progress in finding a correct diagnosis. Furthermore, each time I visit my rheumatologist I wonder whether I should ask more questions about methods I’ve discovered to help like exercising and nutrition. Even though I like my current specialist, I feel that most treatment is more standard practice and not enough discovery. As the patient, should I ask for more options? In the past 2 years I feel like physical therapy and slow, steady water exercise has helped me regain strength more than any medicine. Then again, I’m lacking about 20 years of medical education and experience. Maybe it’s time to start med school.

ALCAT – The Good and the Bad

Posted on by swollenmystery

It’s been about 8 months now since I first got my ALCAT test results. After 6 months I decided to start introducing some of the foods on my severley to moderately intolerant list back into my diet. The results have been less than stellar. My first big introduction was malt. I figured malt would be great to try since it gave me several foods to choose, one being all purpose flour, which I had been craving for quite some time. It’s just not the same eating pizza or trying to make bread with all whole wheat flour. Every once in awhile it’s nice to bite into a warm, glutenous hunk of fresh baked ciabatta or a mouth watering sweet roll from Texas Roadhouse.  Beginning by consuming almost two loaves of fresh baked breads and topping that off with malted milkshakes and a beer later that evening may have been a little excessive, but this was after 6 whole months of resisting every temptation. Both my knees did swell up considerably a few days afterward, but I’m still unconvinced that this wasn’t just a part of my normal cycle of flare-ups.

All through the 6 month period, my knees have flared regularly, leaning mostly to the higher side of inflammation most days. And during those 6 months I’ve been religious about not eating anything from my severe and moderate list of intolerant food ingredients. I even stayed mostly away from the yellow foods in the mild category. The ALCAT plan recommends staying away from severely intolerant foods for 6 months, moderately intolerant foods for 3-6 months and mildly intolerant foods whenever possible. This meant that restaurants were out of the question, and eating with friends or family was sometimes difficult since my wife and I usually would prepare all of my meals before going on a trip or eating anywhere but home.

If anything, the ALCAT test has taught me to consider what I eat each day and try not to eat the same foods more than two days in a row. Even though I’ve made it past the recommended 6 month period, I still rotate foods in each meal and consciously watch so I don’t eat the same foods for more than two days before rotating.  I’ve since introduced chicken, lemon, beef and a few others every few days without much difference or reaction.

Another habit I’ve picked up from taking the ALCAT test is daily logging every single food I eat along with my pain level and amount of swelling. This helps me keep a log and cross reference any possibility of a reaction to intolerant foods.

Overall, I can say the ALCAT test was worth it, but mostly because it rules out the possibility that my knee inflammation is caused by food intolerance. Staying with it for 6 months and remaining strict with my food intake has allowed me to really look back at my pain and swelling levels and find any clues in this continuing investigation. I still feel that food may be a part of my autoimmune issue, but not the main cause. On a side note, my sinuses seemed to get worse (pressure and headaches) after re-introducing a few foods on my list like malt. I used to get sinus headaches all the time before starting the rotation and elimination diet. If anyone else has taken the ALCAT test and found success I’d love to hear about it.

Detoxification

Posted on by swollenmystery

I’ll admit, I’ve been a little paranoid lately about toxins. After finding a significant amount of mold growing on all the window sills and patio door last month, and deciding to turn off the in-home humidifier indefinitely, I suddenly had all sorts of questions popping up in my head. Could mold be causing my immune system to freak out? Do my knees swell when I’m exposed to harmful toxins, bacteria or chemicals? Am I eating too many heavy metals with each bite of fish or vegetables? What about the air I breathe?

Overall I feel like I do a pretty good job of eating the most natural foods and staying clear from harmful chemicals or places that might harbor such toxins. But recently I’ve read that there are several other detox therapies that can help with an autoimmune disorder. Herbal chelation, nutritional therapy, massage, high-heat, intestinal cleansing and environmental controls are just a few. Fasting is another method I’ve considered, but don’t know that I could physically last more than 4 hours without a meal. I would be very interested to hear if any of these techniques have been successful for anyone with an autoimmune illness.

Aqua Therapy

Posted on by swollenmystery

Last week I began a program at the the new local YMCA Healthy Living Center in Clive, Iowa. I thought it was time to do something about my leg atrophy and overall lower body muscle weakness from the past year and a half of not working out due to chronic knee inflammation. After meeting with a physical therapist, I decided to start the recovery program for 3 days each week. I was pleasantly surprised by how nice, helpful and concerned the therapists were and the facilities at the new Y are quite nice. Each session I work with the physical therapist in the aqua therapy pool, doing various exercises to re-strengthen my legs. We usually start with leg raises, step-ups and bicycle kicking and move to walking and even full jogging on the underwater treadmill. At first it was difficult getting used to balancing my semi-buoyant body weight under water, but after a few minutes it felt just like old times! Jogging under water is quite an experience and felt so great since I could feel like running without the heavy impact of my own weight under normal gravity. In my last session I was able to do a sort of sprinting technique against a heavy current. It felt so good to actually feel my leg muscles working instead of my joints. I’m looking forward to continuing the therapy sessions for at least several weeks. I’m hopeful that I will regain the strength I once lost without damaging my knees.

Changing Breakfast Habits

Posted on by swollenmystery

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Reading through a post on Marion Nestle’s “Food Politics” blog this morning got me thinking about my breakfast habits. As usual, Nestle makes some great points about corporate marketing and the content of sugary cereals advertised to kids. As a kid myself once upon a time, I grew up in a household of five, including dad, mom, a brother and sister. We all loved to eat cereal. Limited to healthier selections some of the time, we did, like most households get to have some of those delicious, sugary cereals too. My favorites included FrankenBerry (the original strawberry flavored oat formula before they changed it and made it taste like plastic), Lucky Charms, Peanut Butter, Cap’n Crunch and Fruity Pebbles.

After graduating from college and assuming some sort of responsibility with my own health, I decided not to eat any of these sugar-filled meals for breakfast anymore. I’ve not had any of the previously mentioned cereals now for quite a few years and do feel much healthier for it. However, that doesn’t mean I gave up cereal for breakfast. Aside from the occasional eggs with whole wheat toast, cereal has always been my backup.

As I near the 6 month mark of my elimination/rotation diet, I look back and realize I’ve only eaten processed cereal a few times… so few that I can count the number of times on both hands. Granted, the only cereal I’ve consumed has been Kashi’s “Cinnamon Harvest” which follows my strict ingredient disciplines, but it is still processed. The rest of the time, I’ve gone with oatmeal, homemade baked goods, eggs, juice and/or fruit.

While I can’t say I feel a difference in reducing my inflammation, I feel much healthier and happier that I’ve broken a long-time habit.. a habit of convenience.. a lack of time and effort preparing meals each morning. It is good to know that while sometimes trying a new way of eating may not solve one problem, it’s side effects may help with another.

Working Out With Pain

Posted on by swollenmystery

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At what point do you stop exercising due to pain? Unfortunately I’ve had to deal with this question pretty often lately. I’m used to working out with weights or cardio equipment every other day, usually 3,4 or 5 times a week, splitting cardiovascular and strength training, upper and lower body parts on opposite days to allow the most muscle recovery. However, pain sometimes gets in the way. I live for muscle soreness. It means I’m actually accomplishing something and I know that I’ve worked my muscles enough that they need to rebuild bigger and stronger. Throw an autoimmune disorder into that mix and you’ve got a serious dilemma. On the days I have occasional flare-ups, the question always comes up, “Should I go work out tonight?” Afterall, doctors, books and websites all tell you that exercise is good for arthritis and actually helps diminish it’s effects. I believe that is true, but there is a point when you have to say no. It might take 1 day or 3 for an inflammation flare-up to recede, but your body will thank you for the rest later when the inflammation has gone down and your joints can move more freely.

What really helps me is having a spontaneous workout routine. For example, I recently have been going to the gym Tuesday, Thursday and Saturday. I’ll start off with some treadmill walking or 10-15 minutes on the stationary bike to warm up. After that I’ll move over to the weights area and do a few range of motion stretches and then some mild strength training exercises and then another 10-15 minutes of stretching. Some days my shoulder might be in so much pain that I’ll have to skip a set of exercises that use that muscle group, but continue to exercise other muscles as long as they don’t use that shoulder. That would be a good day for some mild decline presses using more triceps and pectorals than deltoids and then moving on to do triceps, biceps and forearms using exercises that control and isolate only those specific muscles in the arms. The key here is not to give up and avoid working out. And when I do workout with weights while dealing with pain, the weights are very mild. It can be humbling to do shoulder shrugs with only 5lb dumbells after years of using 90lbs but it’s always best to start small and work up. Other days my knees might not be able to struggle through a weightlifting routine so it helps just to get on an elliptical or stationary bike and do some cardio for 30 minutes. Every little bit counts. Even going to the gym or setting aside 30 minutes at home just to do stretches can relieve quite a lot of stress. And believe me.. suffering from an autoimmune disorder is a lot of stress!