Saturday, January 29, 2011

Arthritis is Unacceptable

     Well, we are good for another month!
We went to the Children's Hospital for another treatment. it went well, even the weather gods were on our side. My daughter had another IV, a visit with her specialist and an MRI was done,both her knees. All went well, no word on the MRI yet, but I'm guessing no news is good news! Next appointment is a month from now. Also a visit with the ophthalmologist coming up, where they dilate her pupils to check inside her eyes.

     It seems she is finally doing a bit better....have a hard time saying that out loud for I don't want to jinx it, but her energy level is way up and I hardly hear her about pain. Keep my finger crossed, and in the mean time we are really enjoying this period of relief! She's active, positive and enjoying school. I could get used to this trend!

     I have read this article on a blog posted on the Arthritis Society's wall. It grabbed my attention and stuck with me. It is slightly negative and harsh, but I find there is a lot of truth in it so that's why i decided to post it on my blog for you to read.
So these are not my words, but I do agree with most of it.

  Arthritis is Unacceptable.
I’ve been thinking a lot about this, especially as we enter a new year and I ponder once more what my hopes and dreams for my family are…Arthritis is Unacceptable. Unacceptable as in: adj. not giving satisfaction, inadequate, unwelcome, intolerable.

For me, the first time I heard the phrase, it was like hearing one of those carnival games where you use a sledgehammer to hit the target to try to push the little metal piece to the top to ring the bell. DING!!!! This was a loud ring for me. A bull’s eye. It resonated loud and clear! And it opened something in me….the part of me that sometimes gets sheepish, or apologetic when advocating or raising money for arthritis was split wide open – revealing a pissed off mom that wants to tell you that arthritis is SERIOUS. It deserves the same attention and respect as other diseases…. Yes, even other diseases that can be deadly. Because…. You know what? Arthritis can be deadly too!

Early last year, the world lost a remarkable person because of arthritis. Somebody who was strong, and funny, and had a heavenly singing voice – somebody who loved hockey and could play the guitar and was fearless. A compelling young woman who could convince people to sneak her outside for a midnight snowball fight on hospital grounds, or arrange a surreptitious tour of the gift shop storage room. Maggie had the world on a string and faced every challenge with a smile – even the battle that ultimately overcame her. For even though there were many health hurdles in Maggie’s path, it was a form of arthritis that proved too much… that had Maggie insisting that doctors keep some of her tissue for research because she wanted them to find answers so no other kids would have to endure what she did. It was arthritis that robbed her family of another Christmas with that sweet girl… and has them entering a new year without her. She was twelve years old. Does it get more unacceptable?

I have another uncomfortable secret to share. Often, when going through the process of diagnosis for juvenile arthritis… one of the potential outcomes parents get to chew on for awhile is Cancer. Leukemia was one of the diagnoses we were testing for when Caitlin was hospitalized with high spiking fever, swollen joints, white blood cell counts off the charts etc. When cancer was ruled out – we were so very relieved. This is very common and I’ve spoken to so many parents who have been through the same thing. One mother, though, had remarkable courage when she told me that sometimes, she wonders if cancer would not have been better. Before you judge, you should know that her son has one of the worst cases I have ever seen, and as a young adult, has already lived over 15 years in excruciating pain with no sign of relief in the future. He struggles with depression and mustering the will to live…. So please understand where his mother is coming from when she wonders if cancer might not have been easier. Either he would have been cured… or he would no longer be in pain. That is a powerful and courageous admission….and reminds me all the time of how unacceptable arthritis is.

Believe me! I am not trying to diminish the severity of any other disease. I am not trying to minimize the importance of any other cause, or discount the pain endured by people who struggle to fight those diseases, or the misery of those who lose loved ones. But we live in a world where some causes are just deemed more important. We live in a world where entire football teams wear specially made uniforms and shoes with pink ribbons. A world where celebrities wear colored ribbons and puzzle pieces, write books, do talk shows, and causes become “buzz” and money flows.

All the while there is still this prevalent misconception that arthritis is no big deal. There is still this ridiculously held notion that it’s just an old person’s disease, that everybody will get it, that you just learn to live with it…. That it’s OK…. That we don’t need to talk about it or raise money for it. Essentially, arthritis is not a cause. It doesn’t currently inspire action. It has no sense of urgency, or pressing importance that will draw people into doing something. It’s not a priority for people’s time, attention, or money. And for me, that is unacceptable. For my daughter, whose entire childhood has been shadowed in this stinking condition, that is unacceptable. For the 50 million people who live in pain, that is unacceptable.

It is not acceptable for people to give up their dreams, and their mobility, and their health. We should not tolerate willingly this loss of quality of life… this financial burden, this tidal wave of malady.

If you didn’t know, making arthritis unacceptable is part of the strategic plan and mission of the Arthritis Foundation. You might have seen the phrase a couple of times in the later part of 2010, and it has generated a lot of discussion.
On one of the message boards, somebody posted that it was counter-productive for her to focus on arthritis being unacceptable, because accepting it was the first step in her being able to get on with life. She had to make peace with the reality of arthritis in order to rise above it. Yes, I have arthritis but it does NOT have me. That made a lot of sense to me…. Because I am always trying to force my daughter not to use arthritis as an excuse. It is a reality that she has to live with… I often insist that she push through pain and go to school and I use the reminder that someday, she will have to do the same thing if she wants to keep a job. In a sense, I am asking her to Accept arthritis, as in: verb: to agree to take, to endure resignedly or patiently.

But what it boils down to for me is something like the serenity prayer….God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.
Do I believe that we can change arthritis? Do I believe we can find treatments and better means of prevention for osteoarthritis? Do I believe that we can potentially unlock cures for forms of auto-immune arthritis? Do I believe that fighting the disease, raising money, and continuously opening my big mouth can make a difference? I do. Arthritis is Unacceptable. And I want everyone to know it.

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