FLARE-UP FREE STILL

Today is 266 days of being flare-up free and now I’m really starting to think when will it come? Some might think that at this point I just should think it won’t happen again but my brain is going in a completely different direction. The other day I was dealing with a high level of fatigue and thought that was my first sign of flare, but not true. After my battle with fatigue I went to Bikram and felt a little dizzy after coming out of a pose where my head was below my heart. That was a first so again I thought; ok this is the beginning, but no not true. Yesterday I went to my weight training session and worked out hard with some serious heart pumping weight training and heavy weight so I was worried about being dizzy as well as what my body would do after. Today I woke up very sore but again no flare. I just finished my Insanity Class and although I was utterly exhausted and sweaty I felt really great. So why is my brain thinking the worst? I honestly think because I have not come to accept that my MCTD can truly take a back seat in my life.

For the last 10 years although I don’t dwell on it and I don’t let it stop me from doing what I would like to do, it has always been at the forefront of every decision I make. I chose to make decisions in my life based on feeling good or not and if I might not feel good for days after. In the past if I was completely exhausted I would shut down and rest, now I realize I can be exhausted while staying connected to family and my husband but modify my rest with fun ratio. For Instance, although I really wanted to stay home and rest on Sunday in the past I would have just said no my health comes first and although my health is still important to me, I went with my family and husband out but I just sat and rested while with them. I did sleep so well that night and probably better than if I would have taken a nap during the day.

I still have to listen to my body as everyone does but I don’t have pretend I’m the delicate flower my husband thinks I am. I am stronger than ever before and more determined to put this MCTD in remission. From the beginning of my journals I wanted to be able to say that my MCTD was in remission. Technically I don’t know how long I would have to go without a flare to be considered in remission and considering I still take all my medications daily maybe that keeps me out of the remission bucket but I do know that I feel great, I haven’t flared, and I’m trying new activities all the time with my new found strength.

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2 thoughts on “FLARE-UP FREE STILL

  1. mjh March 25, 2014 at 10:25 pm Reply

    Yay for you. Flare up free is huge. I was wondering, you mentioned that you are on meds. What are you on or is it just steroids? I remember you mentioning before that you were cutting back on steroids. I have been on Xeljanz for just over a year, but I have been off of it for 4 weeks because of some other medication that I have to take for 6 wks for Basal Cell Carcinoma. My dr put me on 10mg steroids for the 6 weeks and I am strictly on the Eat Right for Your Blood Type diet, which is like Paleo, but I still eat brown rice. I try to walk at least 3-4 miles a day, but I still have flareups, not huge though and not much swelling, which is great! When I am on Xeljanz, my diet and exercise, I am completely flareup free. I definitely can’t do Xeljanz without the diet and exercise though. I tried it and I flared big time. I would like to get off all meds, but I don’t want the pain and swelling that comes with MCTD.

    I look forward to hearing back from you. Congratulations on being flare-up free! Thank God!

    • mevsmctd March 26, 2014 at 1:54 pm Reply

      Hello, and thank you for taking the time to read my blog. I was diagnosed very quickly with MCTD and got started on my regiment of medications right away 10 years ago and have been able to manage fairly well without changing much in terms of meds over the last 10 years. I take a daily dose of prednisone of 5mg along with Plaquenil. I feel very fortunate because typically medications only last about 5 years for us then we have to move on to new or stronger meds. In my case I have been on them for 10 years and they are still working.

      Thank you for your well wishes on my flare-up free period and I hope you find many days of being flare-up free as well.

      Nicoel

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