Prison. That's truly how it felt. That analogy came to mind daily as I figured out how to maneuver my body, how to find a way to handle situations that could be embarrassing in public because my body wouldn't behave, and mostly, how to cope with the mental anguish that my body hurt and I was limited. I feel like a free woman right now, and it makes me so appreciate how easy life is without this disease. But, the prison isn't far from my mind, and it often haunts me. I will lay awake in bed at night terribly anxious about the impending return of symptoms if I feel the slightest ache. I'm more than grateful for the reprieve and the reminder of what life is like without symptoms. I've had to relearn to enjoy my body - not cringing at the thought of getting on the floor with my toddler to play, not grimacing as I squat down to use both unlimited knees and pain-free wrists to pick up my infant from his play mat, not wincing as I get in and out of the car or put my purse over my shoulder or dry my hair or . . . the list goes on! I do not take these actions for granted any longer.
I still follow a wonderful blog whose author has helped establish Rheumatoid Awareness Day on February 2nd. This year is the second annual Awareness Day, and I'm happy to help spread the word about it. Kelly Young, the author, is doing another blog carnival, and I've been asked to participate! The topic is
Well, for me, it would mean a great deal, even though I'm currently in remission. Assuming I never deal with the effects of the disease again, I STILL want people to know about rheumatoid disease. For many reasons! It's one of those "invisible illnesses" that people should really understand more. There are so many weird characteristics to the way this disease manifests itself and takes over the body. I've had to learn a lot about it, and I'm still learning as much as I can. It's a disease that's so hard to diagnose, it's often misunderstood - even by medical professionals, and it's not easily spotted in the general public, so more awareness would mean more understanding and less judging.
So, what would it really mean to me? It would mean:
- not feeling embarrassed about how I get on and off the floor of my son's Mommy & Me program, not feeling self-conscious about how I can't participate in toddler activities the same way other parents can
- having people shake my hand in a more comfortable way
- less stares when I'm having a knee flare and walk with a limp
- I wouldn't have to explain the disease, and people would stop trying to come up with my treatment plan based on the commercials they've recently seen... no one does that for cancer, right? You wouldn't just say to someone who just told you she has cancer, "Well, I heard if you eat more broccoli, it will get better," or "Try doing more cardio." I'm not saying that rheumatoid disease is the same as cancer; I'm merely saying that it is a disease, and one that needs to be treated as such - and not just like we would treat a headache or a sprained ankle.
- I'd get more empathy (not pity) when I'm feeling depressed and frustrated because my body has betrayed me
- more money for researching to both understand and to find a cure for this awful (and sometimes fatal) disease
- my friends and family would understand that "pushing past the pain" isn't helpful on a physical level (flared joints should be rested not pushed), and certainly it would help emotionally
- people wouldn't think I was just being lazy or using my disease as an excuse
- my doctors would know which drugs are safe for me, how meds can be used safely before or during future pregnancies, and that I'm not "too young to have this disease" (yes, I was actually told this by one of my doctors)
- my doctors would understand that this is an auto-immune disease that can cause my body to react and inflame in various, weird ways - not just in an "arthritic" way... for example, a skin reaction to an allergen is over-the-top for me (like looking like a burn victim after the anaesthesiologist used tape I'm allergic to for my epidural at my last C-section), or a drug reaction causes mouth sores or itchy elbows or any other number of uncharacteristic reactions anywhere in the body because my body is literally attacking itself or having an inflammatory reaction. I sometimes forget this myself and have to remember not every ailment is a new problem but that it may stem from the rheumatoid disease.
- people wouldn't think I have a low threshold for pain or that I was being weak
- people would understand that I'm not able to play with my two boys the way I have always dreamed of and so desperately want to - crawling on the floor with them, running and chasing them around the house, teaching them how to catch or throw or bowl or swing a bat, throwing them in the air or swinging them around.... and they'd understand just how sad and angry this makes me to be robbed of the rough and tumble play I want to experience with my young sons
- my friends and family would understand the constant fear I have of this disease rearing its ugly head yet again after a year of not having the pain, that they'd understand how careful I am with my body to not injure it or tempt fate to have remission suddenly end
- so many of my friends with Rheumatoid Disease would be better understood - and quite honestly, that many others with "invisible illness" like MS, Crohn's, Fibromyalgia, and Asthma would also be better understood
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