5 Things you should know about my condition and my activism:
- I was misdiagnosed with lupus (yeah, I know, insert Dr. House joke here) in 1997. In 2007, my TCH levels were elevated and I was put on thyroid medication and most of my lupus symptoms disappeared. I've been told by 4 different health care professionals since then that I probably had subclinical hypothyroidism in 1997. The big hint that was ignored: I gained 90 pounds in 6 months. But you know, mistakes happen.
- Along with the hypothyroidism, I have the usual 50+ metabolic fun (though my blood pressure and cholesterol are borderline and probably not that serious). I have had high blood sugar in the past that is now controlled through medication, but no insulin.
- I adopted the Health at Every Size(r) philosophy in 2001 after spending the better part of my life dieting. I have been a successful dieter, losing over 75 pounds 3 times in my life and gaining all of it back, plus some. In January of 2001, I literally had the revelation on the road from my TOPS meeting that I needed to concentrate on health not weight. For the next two years, I re-learned how to eat. most of the time, I eat when I am hungry and finish when I am full. I have neither gained or lost significant amounts of weight since then. I know this because of the fit of my clothes, not because of actually tracking of weight. I do not weigh myself and only let a doctor weigh me when they present me with a solid medical reason to do so. I test my blood sugar regularly and I also take my own blood pressure on a regular basis. I use my bgs, my bp and my pulse to gage how I'm doing more than anything else.
- In 2004, I thought I sprained my ankle, but in fact, I probably damaged some nerves. Since then I've had to use a cane and eventually a scooter to get around. Undiagnosed hypothyroidism probably aggravated the nerve damage. Now I suffer from full-blown neuropathy. It seems to be peripheral, but it affects both feet and hands. The damaged left foot is now deformed, making it hard to stand for long and also making it hard to know where I'm walking. I haven't had any falls yet, but I've definitely had some "weebling" that scares me. My greatest fear for this is amputation. But I am not one to worry about things I don't have to face yet, so let's call that a fear lurking in the corner of my mind.
- I am a medical sociologist. My interests are in health systems, social factors (especially stigmatization) that affect health and disabilities studies, especially universal design. I teach sociology at a community college, so I don't have an opportunity to do original research, but I would probably prefer to write on blogs and public spaces over academic writing in any case. I believe social contexts are important for understanding health.
I'm not sure I have posts that will help the newly diagnosed, but I can share 5 places that I have written or spoke about health that may put chronic illnesses and disabilities in perspectives:
- My husband, Carl Wilkerson, and I wrote a sociological memoir about my life as a fat and disabled person: Taking Up Space: How Eating Well and Exercising Regularly Changed My Life (Pearlsong Press, 2005)
- My husband, who has been my caregiver for 16 years now and who suffers from fibromyalgia, and I also co-blog at Psychology Today. Couples with Disabilities is about couple's issues when both are suffering from chronic illnesses and both are the primary caregiver for the other.
- I wrote a blog for over 10 years called fattypatties. Much of it was simply my experiences as I navigated the social world I live in that vilifies fat people and persons with disabilities (including chronic conditions). I retired the blog this year, but it is where I wrote the most about Health at Every Size(r).
- I also blog at Psychology Today about Health at Every Size(r) and Fatism in a blog called I Take Up Space. Topics
there have included health care costs, healthism, stigmatization and social empathy.
- The final thing about my work is that I am a sociologist and I write about health care reform and public health often on a blog called First Person, Plural.
So that's way more than I have a right to ask you to read, but I do hope you like at least some of it. I look forward to reading and getting to know some of you as well!