Candles on the Sound. A medical fund For Lisa.
On October 11, 2010 I was diagnosed with Systemic Sclerosis Scleroderma. this disease is fairly unknown and rare. A simple way to describe what has happened to me is this...for reasons unknown my immune system started to attack the tissue in my body. If you think about your body and what is made up of tissue you can imagine what is being attacked. The defense of tissue is to rapidly build more. The ensuing result of this defense system has left me disabled. Aside from the debilitating pain this has caused me, I have lost the use of 90 % of my hands and where I thought I was strong I am weakening.
It took a year for me to get diagnosed. My daughter's asthma doctor took one look at me and told me I needed to get to the Mayo Clinic. I could not do this so he said to go to the University of Washington. Which after getting the approval for the referral I was able to do just that. This was October 11, 2010. A day I will never forget. The only thing I could think to ask the room full of doctors was "Is this a death sentence?" The ride home which is about 2 hours is pretty much a blur. Through my tears I asked my husband how to tell my 3 children how sick I am. How do I tell them?
The best comparison I could come up with is cancer, people understand this word cancer. While my illness is not cancer I do undergo cancer therapies. I do get chemotherapy, I do take immune suppressing drugs, I do have to be extremely protective of myself, wear a mask if someone is coughing near me or is sick. I've found myself wishing at times it was cancer. You see if it was, people would understand.
I am extremely blessed with the medical team I have working with me. All of them, from our family doctor to the Professors conducting studies at the University of Washington. I am right wear I need to be.
I travel from home to the hospital every 6 weeks. I am closely monitored. I am tested constantly to see what has been effected. I just completed a CT scan of my chest and abdomen. I also just completed testing in an air chamber. At the time of me writing this I do not have the results. I continue to pray everyday my organs are not affect. You see when your tissue defends itself it gets thick. Thick skin doesn't move and thick lungs tend not to breathe so well. The conversations have begun in regard to stem cell transplant. I can't really put into words how much this frightens me. However, the long term prognosis is brighter with the transplant. As I've told my doctors, I am young enough to want and need long term. I want to live.
The most difficult thing for me is to reach out. I don't really say out loud what I am fighting. I put on my game face after all, I have an 11 year old daughter who needs a fantastic childhood regardless of how I feel. Her childhood memories are not going to be of me, her mother, in bed.
I am also very grateful to have some medical and prescription coverage at a time when so many are without. While I do have this coverage it does not cover everything needed for my health care.
It took a year for me to get diagnosed. My daughter's asthma doctor took one look at me and told me I needed to get to the Mayo Clinic. I could not do this so he said to go to the University of Washington. Which after getting the approval for the referral I was able to do just that. This was October 11, 2010. A day I will never forget. The only thing I could think to ask the room full of doctors was "Is this a death sentence?" The ride home which is about 2 hours is pretty much a blur. Through my tears I asked my husband how to tell my 3 children how sick I am. How do I tell them?
The best comparison I could come up with is cancer, people understand this word cancer. While my illness is not cancer I do undergo cancer therapies. I do get chemotherapy, I do take immune suppressing drugs, I do have to be extremely protective of myself, wear a mask if someone is coughing near me or is sick. I've found myself wishing at times it was cancer. You see if it was, people would understand.
I am extremely blessed with the medical team I have working with me. All of them, from our family doctor to the Professors conducting studies at the University of Washington. I am right wear I need to be.
I travel from home to the hospital every 6 weeks. I am closely monitored. I am tested constantly to see what has been effected. I just completed a CT scan of my chest and abdomen. I also just completed testing in an air chamber. At the time of me writing this I do not have the results. I continue to pray everyday my organs are not affect. You see when your tissue defends itself it gets thick. Thick skin doesn't move and thick lungs tend not to breathe so well. The conversations have begun in regard to stem cell transplant. I can't really put into words how much this frightens me. However, the long term prognosis is brighter with the transplant. As I've told my doctors, I am young enough to want and need long term. I want to live.
The most difficult thing for me is to reach out. I don't really say out loud what I am fighting. I put on my game face after all, I have an 11 year old daughter who needs a fantastic childhood regardless of how I feel. Her childhood memories are not going to be of me, her mother, in bed.
I am also very grateful to have some medical and prescription coverage at a time when so many are without. While I do have this coverage it does not cover everything needed for my health care.
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