Ive always had a weight problem and it has gotten worse as Ive gotten older. Several of my long-term medications cause obesity, hypoglycemia and other issues associated with weight gain. So it was natural for me to wonder if my obesity has caused my Wegeners Granulomatosis / Granulomatosis with Polyangiitis, Fibromyalgia, RLS, OSA, confusion, memory loss etc. This isnt a scary question for me right now because Ive finally figured out how to control and/or lose weight over the long term. This is quite a challenge when I cant do much physically, traditional exercise is out of the question, and I have medications seriously amplifying my appetite and dropping my blood sugar. For me the method is to use a calorie counting app for the iPhone that can enter foods just by scanning a barcode, and most importantly at the end of the day it tells me how much weight Ill gain or lose in five weeks if I keep eating the way I just did. To see that my weight might be up 10 pounds or down 10 pounds based on my current calorie count has really enabled me to understand how my eating effects my weight. If you dont have a weight problem then you cant relate to this, but I seem to be missing part of my neural circuitry that applies cause and effect to eating and weight. In the moment I just dont get the trade-off. And so Ive been studying research papers at the NIH and elsewhere on the relationship between Fibromyalgia and weight, as well as a weight connection to GPA. The finding is that these diseases are co-morbid with obesity. So it isnt a cause and effect, but people with chronic pain and/ or an autoimmune disease often gain weight from the lack of inactivity, anxiety, and medications associated with the diseases and their treatment. Interesting. Meanwhile I continue to battle the bulge. I wasnt able to have full gastric bypass surgery because of all the meds I need to take. To reroute a significant portion of my intestine would make it much more difficult for me to absorb the meds I need. Since it has taken years to get everything in the right balance, it seemed pretty risky to go for the full surgery. So my weight loss has been less than I wanted, but it is within the estimates the Mayo Clinic made based on the minimal approach I chose to gastric bypass. On a related topic, its fun to know that another GPA/ Wegeners patient recently climbed Everest. She was an elite athlete before she got sick, but still it takes great courage to climb such a deadly mountain knowing that your bodys ability to absorb oxygen may be seriously compromised. But she did it, and so she stands as a symbol of hope to those of us who expend every single ounce of strength and effort climbing the stairs to go to bed. For folks like me, it takes enormous effort to make the bed every day. To me making the bed says I didnt languish in bed all day. I got up and lived life as best I could. Even if I wind up going back to bed on really bad days, I know that I was truly up. Why can one patient climb Everest and another have difficulty making the bed? Nobody seems to know. This disease presents in so many different ways in all kinds of people that it is difficult understanding why one person dies a rather unpleasant death from lung hemorrhage and another climbs the tallest mountain. For me, for now Ill be happy to make it up the stairs to sleep in a bed I made first thing this morning.
Posted on: Mon, 11 Aug 2014 02:09:09 +0000
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