Lupus. It’s a word we all know but a disease most know so little about. I was once a part of the crowd that knew nothing about this invisible illness, and then I found out I had it! There is no simple way of getting diagnosed. In fact this was a four-year process and I didn’t even realize it! When you keep getting misdiagnosed but have faith that the doctors treating you are accurate then it doesn’t really cross your mind that something much more could be going on. It all started one night, four years ago when I awoke in a panic. My heart was racing, my chest felt so tight and painful that I could hardly breath. I could have sworn I was having a heart attack! I can still remember how scared I was, I’ve never felt that kind of fear before. We went to the ER only to be told that my cartilage in my chest was inflamed. They chalked it up to exercising. I was told to simply take some ibuprofen and I would get along just fine.
Around this same time I also had a rash on my torso. I went to several different doctors, all of which gave me a different answer, different medicine and nothing proved to work. I was beginning to feel like I was just imagining things. But, I didn’t really know what else to do other than maybe find a doctor that could not only give me answers, but that I could trust.
During all this time my chest pain would return for days or weeks at a time. Eventually I got to the point where I felt like I couldn’t breath so I went to our new family doctor and he started me out on an inhaler to see how it worked and brought me in for follow-up appointments. I was so appreciative of a doctor that cared for his patients and followed up with them. I wasn’t on the inhaler very long and wasn’t fully convinced that it worked. Then I got pregnant and my symptoms improved, which can happen with Lupus patience.
A few months after having my son my symptoms began to come back along with a new one that I had never seen before. Every time I got cold my fingers would turn stark white and stay that way for a very long time. They would then go painfully numb as the blood worked its way back in. This was a pretty scary thing to see. At first I thought it was just poor circulation but I really felt like something wasn’t exactly right. So, I went in to see my family doctor and showed him a picture on my phone of what my fingers were doing. He immediately called for blood work.
Within a week I had my results back where I was told that they were referring me to a rheumatologist. Everything finally came together at that first appointment. The past four years of chest pains was Lupus, the rash was Lupus, the painful shortness of breath was Lupus, my fingers turning white was Lupus. I didn’t even realize during all this time that I was being misdiagnosed, thankfully I found a doctor that called for the blood work.
This is a problem for so many with Lupus because it’s symptoms mimic that of so many other diseases. No one blood test can diagnose it either. It takes blood work, examining your symptoms and your history. Because of these reasons it can take years before a person is diagnosed, for me it took four years and I didn’t even know it!
So much changed after I received my diagnosis. I am learning my illness and hoping to not only spread awareness so others will not go misdiagnosed, but to spread a little hope and inspiration to others in similar circumstance, because Lupus does not define me!
If you would like to join my team and walk a mile in the annual Lupus Walk or donate to the cause, you can do so by following this link.
Thank you for helping me in my fight with Lupus!