"If part of what I've learned about living with a disease – an illness – can benefit other people or change the way they look at people with an illness, then it makes what I do worthwhile." ~Steven Arnold 1968-1998
Recently I have read multiple stories on personal blog posts and The Mighty about people being offended by television or movie misrepresentation of their illnesses. Why do people become so angry about such things? Personally, I don’t get upset when television sitcoms make fun of or misrepresent an illness such as when ABC’s “American Housewife”… Continue reading Why People Become Outraged when Media Misrepresents their Illness
I was invited by a friend recently to an event called Frankenfest held by Indiana Humanities at the Indiana Medical History Museum located in Indianapolis, Indiana. I contacted the organizer of the event to determine if it was accessible, and I was told that the museum itself does not have accessible access to the second… Continue reading My Experience With Accessibility at The Indiana Medical History Museum
I was on the phone with my Long Term Disability claims consultant completing a "randomly selected" review of my condition when she asked, "Are you wheelchair bound?" How do I answer that question? My response... "What do you mean by wheelchair bound?" What does anyone mean by "wheelchair bound"? No, I am not bound to… Continue reading Please Don’t Call Me “Wheelchair Bound”
Does anyone see a problem with this picture? We have a problem in America with people not understanding what it means to be truly accessible. As a wheelchair user, I run into situations such as this regularly. Whether it is an "accessible" toilet stall that doesn't even fit my wheelchair, lack of appropriate handicap parking,… Continue reading A Wheelchair Sign Doesn’t Automatically Make It Accessible
When you are living with debilitating symptoms that nobody can seem to diagnose, all you wish for is an accurate diagnosis. I remember the years I spent thinking, "If I could just get a correct diagnosis everything would be fine." Well, I'm here to tell you I was wrong. The diagnosis is only the beginning.… Continue reading With Chronic Illness, The Diagnosis is Only the Beginning
So, it's been a while since I've posted. I've had difficulty obtaining the motivation to write. Do you ever feel that way? You know, the feeling that it doesn't mean anything anymore. The overwhelming lack of purpose. The loss of interest in all activities because you can no longer participate in the activities you previously… Continue reading It’s Been A While
If you could give your younger self any advice, what would it be? A letter to my younger self about what to expect growing up with a rare, undiagnosed, chronic illness, and what to do differently to improve my life.
This is a wonderful post written by Nina Childish! As I sit here anxiously awaiting the arrival of my new power chair I can 100% relate!! Please click on the post below to check out her blog!
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So we know that Zebras are rare, but what happens to those Zebras who are so rare that the other Zebras don't even know who they are? I've been having a lot of medical setbacks lately, and have been struggling to get answers. We all know that the doctors aren't always the best at understanding… Continue reading The Herdless Zebra: When You’re Too Rare to Fit In with the Zebras
The thing about living with chronic illnesses is they are never static. Every day symptoms wax and wane. Some days are better than others, but the symptoms are always present. However, sometimes changes happen when you just know that it is a stage of evolution in your illness that will change how you manage each… Continue reading When Medical Setbacks Change the Face of Your Chronic Illness
