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Wednesday, April 17, 2013

Invisible Diseases


 Today I decided to talk about invisible disease. You know the ones I mean. Have you ever seen a person park in a handicap spot and they look perfectly healthy? Kind of makes you want to say something, doesn't it? I admit, I have sat in judgement on people who I didn't deem "sick enough" i.e. they LOOKED fine! But what do I know?
 The funny thing is, I have an invisible disease. I should know better. I have fibromyalgia and Behcet's Disease, which also causes a rheumatoid-type of arthritis. I don't even like writing the word fibromyalgia, because it's something people make fun of as a "non-disease" and for many years has been treated that way by the medical community. In fact, it's not really a "disease" in the classic sense, but it is really described as this from the Mayo Clinic:
 "Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals." 
In the research of this, they are finding that people who have the symptoms may feel pain differently, or their nerves "mis-fire" in some way that causes overall pain. It seems to affect women nine times more than men. It seems to affect people who may have had trauma in their lives.
It is agony.
But, I try to ignore it, because it seems so stupid. Let me clarify that. It seems stupid because even though it hurts so badly, I don't want to think about it. I hate to whine.
But I look fine. I exercise nearly every day. I go to the gym. do I want to? No. Does it feel great? Yeah, when I stop. My physical therapist told me to pay attention and stop when it hurts. I told her it hurts before I get on the treadmill or the elliptical. If I stopped when it hurt, I would never do it at all. 
What does "it" feel like? It hurts in nearly every single part of my body every single moment. I have no idea what it is like to be pain free. I don't know what that means. This is a foreign concept.



Years ago when I was sent to a rheumatologist, she said I hurt because I was "fat and didn't exercise."
Another rheumy doc rolled her eyes at me and just kept loudly sighing and said "What now?" when I had a horrifying flare up last April. (I tried to make an appt at the time of the flare and couldn't see her until JUNE)

It wasn't until September that I was diagnosed with Behcet's. Have you ever had a canker sore? Before I started on meds for Behcet's, I had canker sores on steroids. One of the hallmarks of Behcet's is this: 3 episodes of canker sores in a 12 month time frame. Well, since I was a young child, I have had canker sores more like 6-10 times in a one month time frame. You can get these ulcerations anywhere on your body. Commonly in your mouth, they can also show up in your genitals. Now, with my meds, I still get lesions, but they are not as often nor of as long of duration (a few days long instead of a couple of weeks). Today, I went to a dentist for a root canal. Every needle stick, every scraped area, every "nick" of an instrument will result in a lesion. I am guaranteed of that. It is another peculiarity of the disease called pathergy. I also have lesions in my intestines, which have been mistaken for ulcers which can create a whole other agony of its own.

I have pain in my knees, making it difficult to walk up steps or even to get up from a seated position. I have had a painful shoulder going on its 8th month, so I cannot take a shirt off over my head, nor blow dry my own hair very well. I cannot even scratch my own back. I am exhausted to the point of tears some days.I cannot make a full rotation with my neck, try as I might. It makes driving fun when you are switching lanes.

BUT!  I am so lucky. My arthritis is better than it used to be. At one time, my hands were so gnarled, I couldn't make a fist or even open my hands out flat. I couldn't dig change out of my purse because my fingers could not make the grasping motion. So yes, I am lucky! I have an incredible support system. I have an awesome family and wonderful husband. I am blessed every day. I have seen many with much worse disease and my heart breaks for them. I stumbled on "The Spoon Theory" on a site called http://www.butyoudontlooksick.com/
It really sums up some things I feel every day but don't wish to burden anyone else with. You have your own crap! Forget mine! But it might explain a little tiny bit what it's like to have a disease, invisible or otherwise: (link below)

The Spoon Theory

It is very well written and may help you understand what some people go through day after day. Sadly, in reading the comments posted, a lot of them are mean-spirited and nasty. The old "walk a mile in my shoes" means nothing to some people. Guess you just have to let it go and move on.
Next time you see a person that doesn't "look" sick, be cautious. You might not see it, but it's there all the same.

Smile at everyone you meet, for you never know what pain they are going through.

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