MY JOURNEY WITH MCTD

  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.

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3 thoughts on “MY JOURNEY WITH MCTD

  1. Sara Abdulaziz May 19, 2014 at 7:45 pm Reply

    Hi! My name’s Sara and I’m a 18 year old who’s about to enter into her sophomore year of college. I have many hopes for my future and I refuse to not be able to pursue them (such as going to medical school). I’ve been struggling for the past semester with the constant aches and never feeling well. A few weeks ago during my finals I got my first “flare” where my fingers got super swollen and my index finger felt like it was broken. My wrist felt sprained as well. I got my tests back and I have MCTD. It’s a lot to hear in the past week especially being so young. I want to fight it and get my life on track. Everyone’s different! I have a bad case of Raynaud’s but it’s not that bad besides the aches in my joints. I’ve changed my diet and went on a whole foods run! If there’s any way, could you guide me? I don’t know what to expect. I love your optimism and it’s truly inspiring that I can live my life. They’ve put me on Prednisone right now which is doing an okay job and they want me to start Plaquenil. Any experience with the latter? Any tips or words of encouragement? I feel so depressed lately because I am otherwise a healthy 18 year old and I make good grades so I kind of feel like I have a death sentence on me. I know I shouldn’t think like that but I think hearing from another MCTD victim would help! I’m willing to talk via e-mail as well! Or Facebook? Anything would help!! Thank you so much!!

    • mevsmctd May 19, 2014 at 10:04 pm Reply

      Hello Sara
      First let me start by saying thank you for taking the time to read my blog and write to me about your own journey with MCTD. I am not a doctor and therefore I rarely give advice since this blog is strictly about my own journey but since you are so young you have your entire life ahead of you and you can make choices now that will significantly help you down the road. I would highly recommend you read “The Paleo Approach: Reverse Autoimmune, Heal Your Body” by Sarah Ballantyne. Since you are student if you do not have time to read down load the audio version and while you are walking you can listen to it. There are so many important aspects of diet, exercise, sleep, and stress that can really help with MCTD.
      Moving is so important and even though there are days you are in pain and don’t feel like moving the mere fact that you also have days of depression means you should be moving because it will help with your joints and your mood. You have to be careful though since you are in pain and newly diagnosed you may have to gauge your level of activity but walking is great at any level. When I first started walking 1500 steps was agony but my doctor made that my goal and it turned into 3000 which turned into 5000 into 10,000 and now I feel like nothing holds me back. I’m 10 years experimenting with my body and have tried everything. Diet, exercise, and living my fullest life are key for me and you will find your own keys.
      Your question on meds, I have been on prednisone for 10 years and it is a cure-all drug. It can truly make you feel better when you need it but it has its own side effects and I am waiting for the day I no longer have to take this drug but wondering if it will ever come. Plaquenil has been incredibly successful for me and I have taken that one too for 10 years and although they say the life span of these drugs is 5 years for most of us I have been luckly enough to sustain good health for 10 years. There is concern with vision and Plaquenil but I have not found a doctor yet who has seen a case of it so I don’t worry about taking it. If there is a day in my life when I am drug free I will be so happy but until that day comes I take my medications regularly as part of my managing system.
      Keep in mind that MCTD is just a journey in your life, going to medical school and you should is a journey, having a family may be a journey for you so don’t think of MCTD as an identity that makes you a sick person, an unable person or a less than person. MCTD is just a piece of your life puzzle and you have many pieces. You can live with and manage your MCTD so it is not a death sentence. In medical school you will need to research and with an autoimmune disease you need to research. I have made my health a full time job on top of having a full time job and be a vital part of my family. You can have everything you want once you truly believe it and once you can manage your MCTD. Make sure you and your doctors are working together for the same goal and try different things such as yoga, meditation, walking, diet, and make sure you are resting. I get that the idea of rest for an 18 year old seems impossible but it is necessary.
      I truly wish you the best on your journey and hope you stay in touch

      Nicole

  2. Sara Abdulaziz May 20, 2014 at 3:04 am Reply

    Thank you so much for taking the time to write back to me. Reading that gave me so much hope! I just need to take it one day at a time. My first step is to stop getting sad! I’ve been having terrible stomach problems and lower abdominal pain so I’m hoping someone can get to the bottom of this. But then again…I need to not be a hypochondriac and freak out every time something hurts. I’m totally revamping my diet and I’m going to start working out slowly but surely. I hope everything settles at some point!

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