The goal is to provide awareness for Mixed Connective Tissue Disease and Juvenile Arthritis as well as support for others who fight daily.
While I had always had medical problems and a low immune system from the time I was a child and even just got tired easier and quicker, I never dreamed that all of that would progress and get just so much worse. By the time I was diagnosed in October of 2011, I had still never even HEARD of Mixed Connective Tissue Disease, much less imagined I would have a lifelong battle with it. This was only th
e beginning of many different medications, secondary symptoms and diseases, and the fight of my life. I felt like I could literally not get back up again after being diagnosed at the Mayo Clinic and coming home to try to find a doctor to manage things from home. I was told by several rheumatologists they did not even see patients with Mixed Connective Tissue Disease, and 2 told me that there was a high fatality rate so it was a liability for their practice. They should have been the point of giving up.... but as my husband says.... I am just MUCH too stubborn!!! I am DETERMINED to live, not matter how much time, as I am DETERMINED to make my QUALITY of life the best it can be and be the best Mom and wife that I can possibly be. It isn't an easy life, but MCTD will NOT get the best of me! It was even harder though watching my daughter who is fighting Juvenile Systemic Arthritis every day who also has a chromosome deletion and Growth Hormone Deficiency. However, she is also a SURVIVOR who is going to kick its butt and continue to do so... until there is a cure. We are praying and advocating for one in her lifetime! What is Mixed Connective Tissue Disease to me?!?! For many people, it takes different forms. For me, that form is Systemic Lupus or SLE,Rheumatoid Arthritis, Polymysitosis, Scleroderma, Fibromyalgia, Sjogren's Syndrome and even harder to treat and to ever reach remission. Most with MCTD can never reach remission, as when one disease goes into remission another just flares up. I also am almost deaf in my right ear and I lost my right eye in 2016, so I have a prosthetic baby blue in that eye. I have a corneal disease called kerataconus and I went through a corneal transplant, so I wear a scleral lense as much as possible in that left eye to help. Over the last year, I have had more and more flareups of something GI related where I have went through severe reflux, throwing up, diahrea, and a daily fight to find food that doesn't hurt the moment it goes down. I also have Polycystic Ovarian Syndrome (PCOS) and I currently have a larger cyst on one of my ovaries. However, I am determined to LIVE so despite all of this, I dance ballet and I go to the gym when I can. I fight.... and when I get down and feel like I just cannot go on at all.... I fight some more. There has to be a cure someday... but until then.... I am determined to kick the butt of Mixed Connective Tissue Disease!
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