I was diagnosed with Mixed Connective Tissue disease (MCTD) May 14th 2013. I finally found a Dr who would actually do the blood tests I needed! One of those tests was CPK. CPK is an abbreviation for creatine phosphokinase. CPK is the enzyme found primarily in muscles. Normal CPK is 24-175. My result was 5800! From 2008-2013 I was mis-diagnosed or ignored. I look back and wish I had those 5 years back. I could have stopped the damage that was being done to my muscles and other parts of my body. I have overlapping autoimmune diseases, Necrotizing Myopathy (polymyositis), systemic scleroderma and Raynaud’s. I will get into my symptoms and difficulties in my blog. I will also tell my story of how I started my healing journey and how I continue to learn and heal. I have gone from difficulty swallowing, walking, climbing stairs, getting in and out of a car, sausage fingers and severe Raynaud’s (fingers turning white and numb and painful), just to name a few, to a very active enjoyable life. I golf, ride my bike, do yoga and watch and play with my grandchildren just to name a few!!!!!!
I was taking handfuls of medication at one point. Prednisone for 8 months! On February 14th 2014 I took my last prednisone and decided after almost 3 months of research I was going to change how the Dr’s were treating me. Their way was to “manage” this condition, after all I was told there was no cure. I was told they have no idea how one gets this disease and the only option I had was to take medication to help calm down the symptoms and manage the disease as best as they can. I was told nutrition had nothing to do with how I got MCTD and has nothing to do with how I was heading towards remission.
After my muscle biopsy (one of the many tests to help with the diagnosis) the Dr told me it showed “dead tissue” or muscle. My immune system was destroying my muscles, especially my skeletal and proximal muscles. I was so weak and actually had issues with falling down. My muscles felt like they were on fire and burned as if I was running a constant marathon. Once on the medication I had to go to physical therapy. This was May of 2013. I was told it is very likely I would never regain those lost muscles because of my age. After 3 weeks, the therapist told me I was surprising everyone at the clinic. Not only was I the most improved patient they have ever seen but I did it so quickly. Don’t get me wrong, I had a long way to go yet. When I walked in the first day, I could hardly walk let alone pull down on a therapy bar with my arms. Later in the blog I will explain what sent me back to the therapist a few months later, but for now they sent me home to work on my own.
In March 2014 my supportive husband rented a house for me for the whole month in Florida. Cold weather was not good for a number of reasons. I was at the early stages of some major diet and lifestyle changes. In this 4-week time period I went from a puffy prednisone 148-pound body, size 8 down to size 0-2 and 119 pounds. Friends and family were very worried, but I was actually starting to feel better. I was visiting the Dr every 3 – 4 weeks because I had to have blood work drawn to keep an eye on my CPK and many other things because of the side effects of the medication. My CPK actually went down while I was away. But more importantly I could feel some positive changes going on.
Fast forward…I have been on a crazy wild journey. Lots of different naturopathic Dr’s, Functional medical Dr’s and so much more. I cannot wait to tell my story further. I have spent hours reading and listening to others success stories. I have spent Thousands of dollars and without insurance paying for a lot of it. Remember that supportive husband I mentioned? Thank God he is mine! He has rarely even mentioned money and my health. Now, that new outfit and my closet full of shoes or when my expensive eating adds up, he may give me a little speech and the “look”, but in the end he has been by my side loving me every step of the way!
My story is pages long. Someday I hope to put it in book form. As for now this is just a hint of what this blog will be. I will in time share some very private, emotional journal notes. I love to journal and take notes most days, but will admit I have long periods of no notes, because I was not good! I pray this blog will help you and others. God has laid this on my heart and I have been ignoring Him because of my lack of courage. My self-love and courage has grown and continues to grow. So here we go…