Thursday, July 21, 2016
I don't know where to begin. I have so many emotions running through me right now. I start to write, and then walk away, only to come back to it later. Then I erase everything and start all over again.
So, how about a brief outline of background info.
In 2001 I was diagnosed with Mixed Connective Tissue Disease (MCTD) which is basically a mixture of Lupus, Polymyositis and Systemic Sclerosis. I loyally did everything my medical team told me to which resulted in my spending almost two years bedridden with a wonderful nurse caring for me. I was a full time single mother of two young children.
At the end of 2002, I weighed 89 pounds, despite being 5 foot, 7 inches tall. I'd lost much of my hair, had mouth ulcers, and my finger and toe nails had fell out. I was so weak I couldn't even keep my arm on an arm rest and couldn't sit up in a chair without supports. I no longer walked, and had to have my arm strapped to my electric wheelchair to be able to use the joystick controller with my hand. I never went anywhere except doctor appointments as I was to miserable to leave my home. It was at this time that I decided I wanted to quit taking the medications I was prescribed, and that quality of life was more important to me than quantity of life.
Throughout the next 13 years, I learned that our bodies will increase it's capacity to handle pain as time goes on. We can build up a huge tolerance for pain, if only we allow it to happen. Pain medications inhibit this process, as does most of the medications we are prescribed. I also learned that swearing off all medications is like believing I really am Wonder Woman instead of just aspiring to be like her. I discovered The Spoon Theory and made it my new motto and learn to plan my day in spoons. During the best times my house stayed clean, and during the worst times I realized that spending time with my children was more important than all the laundry being clean or the dishes always being washed immediately. Simply put, I lived.
Now, here I am. July 2016.
A year ago my body begin an attack in earnest and it hasn't let up. At present it has affected my intestines, my esophagus, and my lungs. I have an every growing crater across my lower back called morphea that is very painful deep within my body and feels as if there is a on going burning across my skin. My breathing has gotten so bad that I had to get a handicapped parking sticker, although my pigheadedness meant I refused to get a permanent one as I am still clinging to the belief that I will be better by the end of the year!
What all of this means ultimately is that I have to go back on medications that I haven't taken since I walked away from them at the end of 2002. Medications I reacted violently to and that never really seemed to help. Medications that I must take to slow and hopefully stop the morphea spreading and hopefully aide my breathing. Medications that may be able to give me a better quality of life than I currently have.
So, I've blocked all my previous posts on this blog as I want to look forward and not back. I want to stay focused on what all I can do, and what I want to do instead of complain and whine over what I can no longer do.
The key to contentment and happiness is perspective. I choose my perspective. It's up to me to decide to be happy.
This just means it's time to change my perspective. Nothing more. So here we go folks. A new journey, a new beginning.
And I'm gonna fight like hell. Cause that's what I do. ;)