Catana has learned to let the love for life blur out the pain.
This is the truth—because of the pain, when my husband says “good morning baby,” I often want to cry. Then I see our beautiful sons (our rescue dogs) and his beautiful face and I think beyond the pain. I think beyond the crawling, or my screwed up knees that are as bad as my feet now after 40 years of crawling. Because of the pain, I feel so hopeless, but my parents instilled strength in me growing up that I could do anything.
When I was 8, I learned that I could not run around a grass field to raise money. I found that out myself because they let me try. I made 2 laps. The pain from that story has been overcome as a result of many years and self-confidence that my parents and education gave me. Luckily I was blessed with beautiful friends, many who would help carry me. I think two thoughts every day because of the pain. One is suicide, but the overwhelming one is to stay with those I love and to keep on loving as best as I can. Giving is a great reward! Rescuing animals, my sons, my parents, my husband, and friends, I would sure not be here without them. The pain is significant, but love for life can blur that out.
There are people with worse diseases. I still have hope for never having to take pain medication and hope that fixing PC will help other painful skin diseases, burns, etc. I hope that PC research progresses. I do not care about the distortion of my finger or toe nails. The blisters and calluses are soooooo painful all day, every day and into the night.
My mom’s friend lost her arm from a rare disease and said, “That is why I am always grateful for what I have. It’s different because your pain is constant.”