Monday, March 27, 2017

Monday Musings

Last week I mentioned having back pain. Well, as luck would have it, I had an already scheduled check-up with my primary care doctor, so I was able to discuss it with him then. After his poking, prodding, and questioning, he diagnosed me with Sacroiliitis. I didn't tell him that, with the help of "Dr. Google", I'd already diagnosed myself. Here's some information on Sacroiliitis. I was prescribed anti-inflammatories, muscle relaxers, and physical therapy. The doctor feels my Sacroiliitis is most likely caused by arthritis. This doesn't surprise me one bit; having EDS puts me at risk for osteoarthritis. Of course, my reading also told me that sometimes Sacroiliitis can be a part of an autoimmune disease, which I'm at risk of developing another as I already have one. Regardless of the cause, I'm happy to know what is wrong and how to treat it.

Yesterday I went to church; I went by myself as Tim had to go to work for a bit. Because I was having so much trouble walking, I used my cane, and I had several people comment on it. Everyone was nice about it, but it got me to thinking about how I deal with using mobility devices. How I really feel about them. Most of the time, if I'm with Tim, I don't use my cane, I just hang on to him. Now if I'm really having difficulty walking, I'll use a wheelchair, but that's very rare. If I'm that bad, I'm usually too sick to go out. I know I worry about what people think and I know one reason for that. It took me years to get diagnosed, and during that time, it was the medical community that treated me the worst. It really made me doubt myself. I was disbelieved, belittled and ignored.To this day, more than five years after my first diagnosis, I still, at times, doubt myself. Am I really that sick? By using a cane am I just trying to draw attention to myself, or do I really need it? Then there's the fact that my symptoms can be so variable. For example, yesterday afternoon, I was able to go for a walk with Tim. It crossed my mind what people who'd seen me that morning might think if they saw me walking around rather easily later in the day. Of course, they don't know that my pain and mobility are generally worse in the morning, nor do they know that I took a rather long nap before we went for a walk. In this particular instance, I hadn't taken any muscle relaxers or pain meds, but many times, that makes a difference as to what I am able or not able to do. Since the rise of social media, it's pretty common to see the memes floating around regarding what wheelchair users should and shouldn't be able to do. Perhaps you've seen the meme of the woman who is standing up out of her wheelchair to get an item off the top shelf at the grocery store. The thought is that she must not really need the wheelchair if she can stand. Of course, that's not necessarily the case. It's as if people think you must be paralyzed if you use a chair. But, the fact is, many chair users can walk. Some of them can walk some days and not others. Some can walk long distances, some not. Many, have to have someone push them in the chair as they aren't able to to that themselves. There're so many scenarios out there that the average, able-bodied person hasn't thought of. It's obvious this whole topic is one that I feel strongly about. I believe it deserves its own blog post. Look for it in the future.

I suppose it's a bit late, but I wanted to mention that March is National Autoimmune Disease Awareness Month. According to the American Autoimmune Related Disease Association (AARDA), approximately 50 million Americans, one in five people, suffer from autoimmune diseases, 75% of them are women. There are over 100 known autoimmune diseases. For more information, visit AARDA.

How do you feel about using mobility aids? Are you self-conscious? If so, has anything happened to make you feel that way? Please feel free to share. I love receiving input on these kinds of topics.
As always, thanks for reading.


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  2. I can relate to what you wrote about the medical community being the ones that treated you the worst and about still doubting yourself after all this time. I am in year 21 of having fibro and I still doubt myself too. This is a really good blog post.

    1. Thanks for your kind words. I'm sorry you have had to deal with some of the bad ones in the medical community, too. I wish you hope and healing for the future.