Wednesday, August 14, 2013

My body and me

You know when you are young and you are just discovering your body - it's that age when you don't really understand what is going on with everything and you are trying to figure things out. For most kids that is puberty - we've been there and done that. Most of us have discovered our bodies and we understand and know what our body does and what it is all about.

For me unfortunately I am still discovering my body. It is such a struggle every day to re-learn what I can and cannot do. Yesterday I learned that the test results came back from the rheumatologist for an auto-immune deficiency disorder.... he retested me for something I have been living with for the last 8 years of my life. Yesterday I found out the tests came back negative. I am so confused. Have you ever wanted to jump for joy and cry at the same time? Cause that is how I felt in that moment. I'm not sure how many of you know what antiphospholipid syndrome is but that is what I was diagnosed with eight years ago and have been being treated for ever since. I was told that I couldn't have children, I was on blood clot watch, I have a weakened immune system, etc... and now... eight years later I am being told that I don't have that.

So needless to say my body and me are struggling. We are not in sync - we are not on the same page - and we are not understanding each other. The doctor thinks that all along I have had rheumatoid arthritis and that the original doctors mistakenly diagnosed me with APL syndrome instead because there are a lot of the same symptoms that tie in both auto immune deficiency disorders.

What I struggle with - if APL isn't the reason I cannot have children - what is? if APL isn't the reason my immune system is weak then what is? Why am I the only one in my family who got stuck with all these medical problems? Why does my body feel like it cannot move or function one day but feels perfectly fine the next day?

There are so many things in life that do not make sense and one of the simplest things that makes sense to most people but doesn't make sense to me is my body. But, it is something that we have to live with. It's like if you loose a limb and have to learn how to function again without it. Or after an accident or a head injury and you have to learn how to cope again with lose of memory or mobility. There is so much to learn and I feel like I am way to young to be walking around like a penguin because my bones and joints are in so much pain I cannot even walk straight.

I guess the next step is waiting on the approval from insurance for the medications - but that can take a while so we just wait. Until then - I just keep learning how to cope. My body and me just learning how to get along slowly but surely in this new life together.

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