My Whole World

My Whole World

Friday, January 31, 2014

My Medical Chaos

Maybe? Just maybe if I type it out, it will help me get it out of my system. 

First, NO! I am not dying....... yet. I have been asked this more times than I should be, and that is my best response. Most of you know about my skin rash. It started seven, YES SEVEN YEARS, ago. When I first got married Tom noticed this small spotty rash on my lower back, and after going to a few dermatologists, I never got any answers until a year ago. I found a dermatologist that was so intrigued by my case that it fueled a type of determination and a possible hope that something could be done. 

Now rewind, what started to be a no bigger than a baseball card size rash on the very small of my back, has now grown up my back, wrapped around my chest and up my neck into my scalp, and is NOW coming down my arms and possibly down my legs. The diagnoses that I finally got was confluent and reticulated papillomatosis, and what I refer as CRP. A rare skin disease and which none of the treatments known to help the symptoms NEVER helped me, so we questioned the diagnoses. 

I have been on so many experimental ointments, creams, medications that I started loosing hope to ever being able to have beautiful skin ever again, and not only that but the scary idea of getting an infection in the rash on such a large area of my body would surely make me septic and die. BUT then came a rare opportunity to be apart of a grand round at the U of U hospital for rare cases that a huge group of doctors come and look at ever inch of your body and ask you questions, then they discuss your case together and come up with a game plan. 

After voluntarily getting naked for all these strangers, I received a call later that day and the news I received was something I was not prepared for. The doctor said they reviewed all the pathology reports and agree that is the most severe form of CRP that any of the doctors have ever seen. They project that it will climb down my arms and wrap onto my face and down my torso, and the only medication that could help me is so potent that I would have to be done having children. So I opted for now to do the experimental phase and try a few new things that I have not tried, only to find out that I cannot bare children during or after I start the experimental phase and that I need to really address the "sterile" issue as soon as possible. 

Now, things I NEVER want to hear "you already have two beautiful boys, be grateful for that." and "you shouldn't ever get pregnant again to begin with, your last one almost killed you, this is God's way of saying NO MORE!" and lastly, "be glad its not something much worse, you should be lucky that is all it is." These are things I have already heard and I warn I might just start crying on the spot if I hear something as ridiculous like what I have already heard. 

Recently this week I have had a series of tests to even see if my body could handle the medications, and the news seems to be a little more discouraging every doctors visit with more warning and more information. 

Just be kind. I do not want sympathy. I do not wish for any advice. Just know I am handling the cards I have been dealt with as much grace as I can and I lean on my family and loved ones. Truth is, I wanted another baby..... very badly. 

The next month I will be discussing all of my options with my doctors, and take it one day at a time and count my blessing one by one. 


Michelle said...

you're an amazingly, beautiful, strong woman!!!!

Cara said...

That is horrible news. I am sorry Sherrie. Hang in there. I'll be praying for you. :)

Anonymous said...

Have you tried using Minocycline?