Thursday, April 4, 2013

DAY 4: My Top 7+ Useful Links for Health Resources

  1. Neuropathy: The Neuropathy Association This is the best website I've found for information about treatment and advocacy.

  2. Chronic Invisible Illnesses: The Invisible Disabilities Association A beautiful website dedicated to promoting understanding about chronic illnesses and the frustration many sufferers face because they are not stereotypically sick. (Also check out The Spoon Theory.)

  3. Chronic Pain: In the Face of Pain: Pain Advocacy 101  Note that I really liked the American Pain Foundation, but it has closed its virtual doors due to lack of money and outside pressure trying to link it to drug abuse. Another good source is NORML's section on Medical Marijuana, which is pretty good at keeping up with changes in law and latest research.

  4. Universal Design: Rolling Rains Report  Scott Rains concentrates on inclusive travel, but much of his work is overlaps with Universal Design. (Also check out Universal Design and the Americans with Disabilities Act to see what the difference is between law and practice.)

  5. Hypothyroidism: Thyroid Patient Advocacy  I am not including diabetes in this list and have a problem with most of what I read about hypothyroidism as well. Most of what is available on the net emphasizes weight as an aspect of treatment and often does patient-blaming, suggesting that sufferers of both these conditions may have brought it one themselves. Also, there is a lot of quackery on the net with instant cures and amazing treatments that mostly just rip off vulnerable people. I do belong to several list-serves and FaceBook groups that I trust where we share research and experiences. If you are interested in learning more, just make a comment to that effect and I will be happy to help out.

  6. Caregiving: Couples with Disabilities Okay, this is tooting my own horn a bit and I will admit that we have a ways to go to have a lot of information available for couples like us who both suffer from chronic illnesses and disabling conditions as well as give care to each other. But I want to highlight that there isn't much available in this area. Most caregiving websites I've seen offer standard advice about self-care and taking time off (like that can happen with the American For-Profit Medical System), but always assuming that a caregiver is well. This assumption usually drives me away from the site and thus, I can offer none here.

  7. Health at Every Size®: ASDAH's Health at Every Size® Blog  This is probably the best way to read interesting and current thinking about HAES. Also check out Linda Bacon's site, which will lead you to lots of other information as well. The site is retired now, but if you want a fast amount of links about HAES as well as Fat Acceptance and Fat Liberation, ReVolutions Resources is a place where a lot of information is available in a centralized area, including a "Where to Begin" set of links on the left sidebar.