I was diagnosed the summer I was turning 40. What a way to turn 40, huh? Over the years, I had always questioned certain things like why was I always so cold, why my fingers were turning colors and becoming numb and why I had problems digesting food. I had been a smoker for years and I really loved smoking. If someone would ask me if I wanted to quit I would always say, “Why? I like it, and it is my one little bad habit, I’m not hurting anyone.” What I didn’t realize is that I was really hurting myself.
My symptoms were getting worse and I was going to all kinds of different doctors. Finally, one of the doctors I went to said, “oh, I see you’re a smoker.” and I very proudly responded, “yes I am.” He then replied,” well I can treat your symptoms but I won’t because it would be wasting my time.” It was like someone literally hit me in the head. I have not picked up a cigarette since which is great, but my symptoms have not gotten any better and the doctor really can’t treat me.
In the beginning, it was really difficult to get a diagnosis. I often felt that the doctors thought I was a hypochondriac. Some of the symptoms for autoimmune diseases are vague and tend to come and go. They were even hard to describe. This took a real toll mentally, and the doctors kept telling me it was stress. I finally found a doctor in a city nearby; he was 80 years old and still practicing. He asked me some questions and in about 10 minutes he told me that I had Scleroderma. I thought, “What is that and how do I even say it?”. He was the only one that really listened to my symptoms and how I was feeling.
The thing with an autoimmune disease is that it is completely different for everyone and the symptoms make your immune system work against you. I take medication for the reflux so my esophagus does not erode. I also take something for my thyroid, because it is completely out of whack. At the end of the day, there is nothing that will cure my autoimmune disease and my hands and feet get worse every year. My fingers turn red and white, they get puffy, blisters on the tips, and also go completely numb. The numbness feels like when someone goes outside in the winter with no gloves on and plays in the snow. My hands feel frostbitten, and now my feet have joined.
So what have I learned? I’ve learned to live through it; it could be a hell of a lot worse… I could be dying. There are people out there with more problems than me. I’m very blessed, I have a husband that understands when I’m having a bad day, and he takes on things that are more difficult for me. Surprisingly, grocery shopping is the one that is his favorite. My kids are my greatest gift. I live everyday for them because I want to see every one of their dreams come true. Careers, weddings, births...I do not want to miss a moment of them growing up!
I am so very honored and blessed that my kids want to talk about this disease and me. Not so much for me but the disease itself. They are and have always been my biggest cheerleaders and I know I can always count on them! There are more than 80 different autoimmune diseases. Some are so much more debilitating than mine at this time. There needs to be more awareness and people to talk to. I feel like it takes a toll on me more mentally than physically sometimes. It would be great to talk to other people and learn about what they are facing.