According to The Lupus Foundation of America, Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. The foundation goes on to explain why Lupus is considered an auto immune disease and what that means. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
If you’re reading this blog post it’s safe to say either you have Lupus, are waiting for a proper diagnosis or have a loved one that suffers from the disease. My heart goes out to each and everyone of you, Lupus is an unpredictable, painful auto immune process that affects sufferers as well as their friends and family.
My Lupus diagnosis didn’t come easy. It was two months after giving birth to my second son when the pain in my hands, fingers, elbows and shoulders were too much to bare. I could no longer go into the sun without my cheeks becoming inflamed and a painful rash breaking out all over my chest. My hair began falling out, my stomach and head were constantly throbbing and my level of fatigue kept me home bound for weeks at a time.
My husband and I agreed something was wrong so I went into see my physician. The initial response I received “you’re a new mom, of course you’re sore and tired,” made my blood boil. I KNEW something was wrong (there was that intuitive voice again) so I insisted on seeing a new doctor, who took my symptoms a bit more seriously. After witnessing the swelling and inflammation around my joints, I was referred to a Rheumatologist who then ran a panel of tests to determine if in fact I had an auto immune disease.
A week after going in for blood work, and imaging of my hands and wrists, I received a call letting me know I had a UCTD (undifferentiated Connective Tissue Disease). In my mind all that meant was I was sick, but they couldn’t determine why. The Rheumatologist explained that auto immune disorders are very difficult to diagnose since they have numerous symptoms, many that overlap and it would possibly take years before they could diagnose exactly what was going on.
So what was the answer? Steroids. Had I known then what I know now about Steroids, I would’ve never taken them. Granted, the inflammation came way down at first, but then a whole other set of side effects set in.
After being pulled off steroids, they moved me to the next level of treatment, a drug used to cure Malaria. Yes, that’s correct, Malaria, and when that didn’t work I was prescribed immunosuppressants . At this point my condition was not improving and we decided it was time to pay out of pocket to see a specialist.
Following a two hour office visit and another round of blood tests from one of the most well respected auto immune experts in the field, I was diagnosed with Lupus and in attempt to get my inflammation under control was started on biological medication. For the next year, my husband gave me bi-weekly injections as I would hold my breath and pray to get better.
Each medication became trial and error and eventually the doctors began referring to me as an anomaly. The progression of my disease was atypical and although each specialist I saw stuck to the Lupus diagnosis, collectively they believed something else was going on.
And sure enough, it wasn’t long after when they discovered in addition to the Lupus I was suffering from Hyperparathyroidism and Inflammatory Bowel Disease. Although I continue to battle painful flare-ups, knowing the cause behind them has helped me accept my condition tremendously.