I would like to introduce myself and let you know that I have mixed connective tissue disease and although I was diagnosed 7 years ago in August of 2003, I’m at a point in my life where I think I have been through this long enough and tried enough things that I could help other people in a similar situation. My first 7 years with the disease were about finding me and developing a life I could manage and live with daily as well as finding new normalcy and base lines in my life. It also took me 7 years to find balance in my life, however, that is ever changing and I strive daily for balance. Some days I have it and some days I don’t. This is my journey, the good, the bad and the ugly and if any part of it helps someone else than my goal of balance, normal, managing and surviving is enhanced even more.
I was diagnosed with MCTD (Mixed Connective Tissue Disease) on August 14th 2003 exactly 2 weeks before my wedding date. Not only have I had MCTD for 7 years but I have been happily married for 7 years as well. The journey from that day to today has been long. MCTD is an autoimmune disease that attacks your joints, muscles and ligaments. It can be very painful and although everyone is different we all have our “flare-ups” mine consist of a sore throat to start, pain in my body from feet to head, fever, chills and overall terrible feelings in the body and mind. My flare-ups range from manageable to where I still go to work but have a hard time walking long distances to severe where I can barely make it into bed the pain is so bad and the chills are so bad. I experience these flare-ups sporadically and it can be 1 time a week but on really good days I can go 1 time a month. The longest I have gone without a flare-up is 90 days. I keep track in a journal every day about how I feel, what I am eating, how my exercise is going and any other information I deem important. My hope was that if I kept a journal every day I would find triggers or times that I could start to pin point and change. Unfortunately, that has not happened but I highly recommend keeping a journal for your own sanity so you know how long you can go between flare-ups and make goals to try to get a little bit further but don’t get down if you don’t make your goal. This disease is unpredictable and frustrating and affects everyone differently.
If you are newly diagnosed or have been living with this for many years you will learn that you will have great days and to take advantage of those days and when you have bad days understand it is part of your life, embrace it and love yourself even more. I will discuss diet, exercise, alternative medicines and other tips I have learned along the way but know I am not a doctor or a nutritionist or a fitness instructor but I am a women that is about to turn 38 years old, I have a life, a husband, no children, very supportive friends and family and I know firsthand what living with this disease means.