Learning to Live with Erythroderma

I have been terribly ill with this horrid disease!  The backs and sides of my legs and hips are red, blue, and black.  I couldn't sit or lie on my back or sides for a month because ofthe pain.  I needed the doctor, but he is a 3-hour drive from us and I couldn't make trip in that condition.

Other symptoms were burning hot skin.  The heat just rolled off me, but inside I was freezing.  On a hot summer day, I was bundled up like it was winter.  I ached and hurt all over.  My hip joints were so painful, I could only shuffle across the floor to go to the other room.

I should have gone to the ER, but it is such a rare disease that most doctors don't see it once in a lifetime of practice.  If I couldn't have my specialist at Vanderbilt, I didn't want anyone.  I was too sick to have people messing with me who didn't know what to do.  

On Thursday I had an appointment with my family doctor.  He told me if this ever happens again to go directly to the ER, that they do have a standard treatment for Erythroderma and they do know what to do.  It can't be cured, but they can give me some relief.  He assured me he would take care of me, even though he has never interfered with the specialist's treatments. That really set my mind at ease, knowing I'd have help.

His nurses called around and found a local Dermatologist who would take my case and made an appointment for the very next day!  Another blessing!  

The new doctor changed some of my meds, prescribed new creams and cleanser, gave me a long detailed list of how to treat the different areas of my body.  She also put me on a 3-week regimen of Prednisone.  Thank Goodness!  I've had that before and know how much better I feel when taking it.  I'm also on a Z-pac for infection in my legs.  After only 2 days of meds, I'm doing much better and can sit for short periods.  I believe I can go to church tomorrow.

I believe I might have a chance with a doctor who will try new things until something works.  Depression had set in, and I was feeling so hopeless.  I knew the damage this disease does to my body, and had no clue where to turn next.  Now, I'm hopeful, even positive again.  I'm so thankful to all these people who helped me in various ways.  Bless their hearts!