My “official” diagnosis’s are Undifferentiated Connective Tissue Disease, Hoshimotos, Raynaud’s, Hypermobility Syndrome (benign), Amplified Pain Syndrome and I’m sure I forgot a couple in there. But that’s not who I am. I am a Christian, a mother, a daughter, a sister and a friend.
I have been sick since the day I was born. I was three months premature. I have trudged from specialist to specialist it seems for a good portion of my life but no one could seem to explain the pain, fatigue, fog and other medical issues I was having. It seemed to be in my head. My joints started dislocating at the age of 9. No explanation. One day I bent at my knees, playing and the next I was in searing pain and my leg stuck in a sickening way. I was told to not bend at the knees, sit Indian style and my activities restricted. At an early point in my life I had to manage on my own due to personal issues within my family. So I managed the best I could. But I was always tired, in pain and a fog.
Almost two years ago I got injured at work, July 24, 2015 to be exact. A lot of doctors, from my experience, like to dismiss workman’s comp cases. After about 4 months, and lots of PT/OT, I went to a specialty hand surgeon. He took one look at my hand and started asking questions about my overall health. This is the day my life changed both negatively and positively. He explained to me that I had ruptured a sagittal band in my hand but would not perform the surgery until I saw a rheumatologist. It was no longer in my head. It was my new found reality. When you are told for so long (pretty much my whole life) that this is in your head and even sent to psychologist, you begin to believe it and “manage” on your own. People would ask me all the time what was wrong with me? Why are you always sick, tired, in pain? My response became I am dying. No other explanation than that. They would laugh like I was joking, but to me it was no joke, it was and even is some days how I feel! No I am not suicidal. I want more than anything to live my life and enjoy it to the fullest that I can.
My diagnosis’s started coming in February of 2016 when I went to see my rheumatologist. In March 2016, I was scheduled for hand surgery and since then I have had 7 procedures on my hand and 3 on my shoulder. I go to PT 2 times a week. Sometimes I have 3 doctors’ appointments within the week as well. I am now disabled. My medications include Plaquenil, Methotrexate, Gabapentin, Trazadone (amitriptyline did not work for me), Folic Acid, Tramadol and a multivitamin. I have seen some good days and I cherish them but they are too far in between.
We need awareness which brings understanding, we need compassion, we need to be heard, but most of all we need a cure!