I think we all understand your frustration, and perhaps we all even have the same questions in our hearts. I can only speak for myself, that I decided it would make me crazy if I kept trying to find answers to the "why" questions....like "why did I get this?", "why do I have to hurt so bad", "why can't I be normal?".....and the list goes on for days !!!!
There aren't answers right now to satisfy our deepest longings to be free of this disease....but what we can do, my friend.....is this: CHOOSE, that's right - you have the ability to choose and decide how do you want to live with this disease. Do you want to keep asking a question that doesn't have the answer you're looking for......or......do you want to choose how you can make your life as managable as possible with ALL the tools you have in your "toolbox of life" to keep you content. In my toolbox, I discovered that I had an endless supply of love (from family and friends), let's see there's also a ton of appreciation (that I still can see, touch, hear, smell, laugh, love...and learn...yep, even cry). I also have stashed in my life's little tool box....and generous portions of hope - not so much that a cure is found - but hope that God will give me the strength and courage it takes to help make someone else's day a little brighter. Hope that I never forget to be thankful for all I DO HAVE.....and lastly- I discovered that no matter what the circumstances, we all have a choice in how we choose to accept and live our lives. Positive or negative. I choose positive, I choose laughter, I choose friends, I choose family, I choose to talk when I am scared, when I am angry, when I am frustrated.....it helps me get dialed back into reality....that there is still much to be thankful for. There's no greater gift than that of being loved.
Consider yourself loved, consider yourself....and choose joy, because it makes you feel better.
Hang in there friend, take it one day at a time - noone is promised tomorrow - so squeeze all the happiness out of today that you can.
"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown