In the Dark there is Light—Hopeful Light

I didn’t know what was going on. I was confused. I never had this before. This being blisters on my scalp. What could this mean…cancer??? I waited a little bit to see if they would go away, but no…more and more blisters were forming. I went to the doctor and he thought bacterial infection. He gave me some ointment, but the blisters kept coming. I went to an oncologist, but no, not cancer. I went to an Ears, Nose and Throat specialist because I was having pain swallowing and eating. No one could help me…then, I went to a dermatologist who biopsied my scalp. They tested twice because they did not want to believe the diagnosis. It was true…I had a very rare autoimmune and deadly skin disease called Pemphigus Vulgaris. The tissues were attacking themselves from the inside out. In no time, I had blisters all over my scalp, face including ear and eye, chest, and inside my throat, mouth, gums and lips. It was painful to do anything. I had to sleep on my back with a towel under my neck so my head would not touch the pillow. 

The doctors kept pumping me with different drugs to no avail. I was getting worse by the day. I felt very isolated and alone. I live by myself; I did not have a lot of help. My friends would come over and be shocked by the image in front of them; some cried. My friends helped where they could, but in the end I had to do what I had to do. I run my own business helping others get well so we were all in the sandbox together.

I had contacted my siblings and parents who were on the East coast sending pictures, but they were not concerned until I sent my Will to my brother. I knew I did not have much time left. My sister came out first who drove me to Denver to the teaching hospital. My brother came out shortly after and then my Mom came out after I left the hospital. I finally felt hope at that point. It took 4 months to completely shut down my life and it took 6 months to get well with an infusion drug called Rituxan, designed to shut down my immune system. 

I lost a lot of weight because it was painful to eat. The recovery was long and the journey was enlightening. I was able to figure out the root causality of why I ended up with such a horrific disease. I was able to heal knowing what I needed to do to get well and stay well. I had 2 more bouts of blisters in a course of 7 years. I am in remission once again. I am confident that the disease has run its course and it won’t be affecting me, anymore. The light is courage; strength and hope…  stay in, hang in and pray, pray, and pray. I encourage those who have lost hope to find the path that works for you and stay on course. I wish the very best to all.