The truth if this diagnoses is correct, I am partially disabled. But it's invisible and working out may actually tear and degenerate my muscles faster.
Not all of my muscles, only the one's mainly affected by my disease. It leaves me not able to work out at all. Granted I am not in a wheelchair. But I don't know if I'll end up in one. It may be sooner than I could have ever imagined.
There is a chance that this treatment will fail.
Or maybe I will end up dying of cancer like a lot of people with my disease. For some reason dermatomyocitis and cancer are often associated.
*BUT* Perhaps they are associated because of celiac disease, which has been shown to be an underlying cause of cancer and now being on a gluten free diet my risk for cancer has greatly decreased?? Perhaps I will fight off this strep, heal my stomach, and my disease will go into remission. I will then take all of this knowledge that I have gained about being healthy and become a for life health nazi. This of course is my ideal scenario.
Wouldn't it be nice.
It would really.
I don't think I've truly accepted the fact that I might not get better. Like I'm in some massive, epic state of denial. It leaves me working hard at trying to get better. It's nice to know there really is a chance, considering I've emailed a woman in Florida with my disease who received remission due to diet. Her take on it was a bit different than the one I am following now. Which is interesting!
Am I convinced still that I am going to die young? I don't think so. I really don't think this is going to happen. Based on a lot of gained knowledge. Based on the amount of improvement.
It's really like a puzzle! A time sensitive puzzle at that. But a puzzle. I do believe it is possible to solve a lot of the mysteries of health. How long each different disease would take, I obviously have no idea.
So I became angry. Really angry at the whole idea of major struggles, some of them being permenant. Wondering why there is so much suffering in the world. And such unequal suffering. Not that I want other people to have to go through what I went through, although I have gained from it. But really, if I live an entire life like this...I just don't think that it is necessary to teach me all that I can learn from this disease. I'd really like my energy back eventually. I'd really like my full mobility back. I put a great deal of effort into being energetic around people, but it's a struggle. I get home and I am really tired. I look at perfectly abled people not using their bodies. People who never really enjoyed being active. But me, I enjoyed being active! I felt an intense passion in being active. I snowboarded, ran, joined the military, worked out, dreamed of climbing a mountain someday, wanted to go backpacking, wanted to run a marathon someday, enjoyed swimming. I am in the process of possibly being kicked out of the military because I cannot pass a physical fitness test. I know I shouldn't feel this way, but it makes me feel shameful. It makes me feel inadequate. Am I going to be able to be a floor nurse a few years down the line?? Possibly not if this disease progresses. Yes I am currenlty a nurses aid, that is a lot of lifting. This disease makes my job twice as hard. But it's all invisible. And sometimes I cry and sometimes I look at the sky and wonder why the world that brings me so much joy can be such a hellish misery at times.
It's perspective? Perhaps. But look at the quadriplegic. Is that quality? I'm not a quadriplegic so I really have to say no. But hey I'm a different person than any other person out there and I have never experienced that type of what I would call suffering. Yes I have suffered. But nothing to that extent. I wonder if there is a quadriplegic out there who is happier than a completely abled person? For some reason I think I can answer yes to that question.
The band the Postal Service.
"Let me please interject here. You're getting carried away feeling sorry for yourself."
Even Michael J. Fox, the man with a disease who up to this point up to my knowledge has never had a case go into remission. Parkinsons disease. He still named his book, Lucky Man. But what is his raw emotion really, what are his thoughts in his lowest moments? And then again there is Hunington's disease. That's a pretty horrible disease. A woman in the nursing home I work at has it. She used to work a full- time job. She used to live a normal life. Now look at her. What are her raw emotions. Both of these diseases take one's mind as the disease progresses. What are the last raw, completely genuine thoughts of people before the disease takes their mind?
Let me say it again.
Let it ring.
"Let me please interject here. You're getting carried away feeling sorry for yourself."
Paraphrasing here, but Fox stated if only my body was where my mind is now.
Disease does make one a better person on the inside, even if they are projecting outwardly in at times a negative and angry way. It matures. It breeds intense compassion and understanding. A time is fleeting and our existence really is tenuous. Just in case you forgot because it is easy to do. Even if one believes in heaven, what does that entail exactly? I guess if it's heaven it's supposed to be good right? In my opinion there is a lot of mystery in this world.
That then turns me to ask another question. Can I be happy with whatever time I have left on this earth, even if it is not my most desired quality? Yes, yes I can be. And that's what I need to start doing. In all honesty it's better for my health. Now that's all nice and easy to be said, but what can I do to actually make this possible? I can list many obvious ideas: yoga, meditation, positive thinking, staying organized, getting enough sleep, seeing friends and family, trying to keep the most normal life as possible...and I can go on...and on...and on...
But what I think is the real answer is on a more umbrella, bigger scale...
I can work hard, learn, live one day to the next, and just enjoy the journey.
Yep. We've all heard it before.
Enjoy the journey.
Every damn day. I had to add this with thought of one of my best friends Roseann.
Enjoy the journey, every damn day!!!
I enjoy the curiosity. The world really is interesting. It keeps me going.
