IT’S A MATTER OF WHEN

I went 300 days without a flare and on day 301 I went back to zero. I got lulled into this false sense of security that I was on a new medication and perhaps my flares were over.  I need to remember it is not a matter of “If, but when” and be ready for them. If they come once a year that is far better than every 60-90 days.  I have hope that I can get more than 300 days next time.  So, everyone asks me what can I do differently or what brought this flare on and what can I do next time.   My husband and I are in the middle of selling our house and building a new one.  We are doing this to be closer to family, to shorten our commutes and to make the quality of our lives better in our “middle years” but the stress that surrounds this endeavor is overwhelming and stressful to say the least.  I’m not 20 building a house like I was the first time I did this and I also didn’t have MCTD the first time I built a house so I knew this year in general was going to wear me down.

Friday night we were sitting on the couch talking and discussing our plans for the weekend and I started to smell gas.  My husband said well you are going to flare so we have to rethink the plans for the weekend.  He reminded me that I smelled gas the last time I had a flare. I had to look back in my journal and sure enough at day 285 I smelled gas and flared the next day taking me back to zero.  Smelling gas is a sign so now I know what to look for but what I do about it I’m still unsure.

I woke up Saturday morning and thought I feel ok and went to teach my yoga class thinking I had either beat the flare or it would come on Sunday.  I got to class and in the warm-up my body started to stiffen, and the shakes came and the sore throat was so severe.  I had 60 minutes to finish this class get in my car and home to bed.  I finished my class, called my husband and he got the heating pad ready, fluids ready and was there to greet me to take me to bed.  The fever came on and the pain was so unbearable.  I ended up finally falling asleep and sleeping soundly for several hours. When I woke I felt mildly better but still as though I was hit by a huge truck.  The rest of the day was spent drinking fluids and falling in and out of sleep.

However, Sunday I woke up as though nothing had even happened so I was back to day 1 and went to my yoga class to teach a full on class with no worries. I did take it easy the rest of the day to ensure that truly got my strength back but I felt so much better. Today I am back to my exercise routine and back to eating lots of food again and feeling great.  Now my job is to take the next 300 days to research and see what I can do when I smell gas to try and either prolong the flare or just not have a flare. I don’t exactly know where to start but I have some time to figure it out.

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2 thoughts on “IT’S A MATTER OF WHEN

  1. jodiebodie June 19, 2016 at 9:25 am Reply

    Thank you for sharing your personal experiences. There were a few extra interesting things in this post of yours.

    a. You smelled gas as a precursor to your flare. Lucky you and your husband are observant and remembered this from the previous experience.

    It might sound like a silly question but when communicating in an international forum like the internet different words mean different things. How do you define ‘gas’? a) natural gas smell from the gas mains that is used to heat hot showers and fuel a stovetop? b) ‘gas’ as in flatulence; or c) ‘gasoline’?

    The reason I ask is that every now and again I sometimes think I can smell natural gas (such as from my stove) and yet no one else in the family can. I find it disturbing because if there were a leak, it could be quite dangerous but on each occasion, I’ve been the only one to smell it, it is intermittent and I can never quite locate the source. It’s puzzled me on at least 2 occasions this year. Now you have given me something else to consider and observe next time it happens. I’ve been going through a patch of up and down days but I couldn’t tell if there were any connection to that and perhaps a hallucinatory smell.

    b. Your flare came on suddenly and they have been quite severe each time you have described them but your recovery seems to have been just as swift. Do you think your fitness is a factor for a speedy recovery?

    c. You have been feeling well for longer intervals between flares. My doctors advised me that I can expect flares to reduce in frequency but when they do hit, they are likely to be worse. Does your general pattern reflect that generally? I hope you don’t mind me asking. There isn’t a lot out there specifically about MCTD so I suppose I am on the lookout for any common patterns that might help me to make sense of this whole thing.

    c. The MCTD/lupus thing. My symptoms don’t present as the ‘typical’ lupus symptoms either yet my bloodwork also suggests it is “at the lupus end of the spectrum”. In some ways I don’t feel like such a freak to find out that there are other people with similar news. Then I can say, “Don’t blame me, blame MCTD”.

    Good luck with your figuring. I hope you share the findings here. I will bear in mind all of your observations so far while trying to work this thing out.

    Take care. 🙂

    • mevsmctd June 20, 2016 at 4:01 pm Reply

      Hello Jodie
      Good point on the communication of wording. I actually smell gasoline and I find it interesting that your sense of smell changes from time to time too. I don’t know if someone without MCTD has the same thing but I can say for certainty that my husband has never mentioned smelling gasoline that wasn’t there. I do think that being as healthy has I can has helped in the quick recovery periods and I hope that once I get back to regular weight training and building back up the muscle and hopefully keeping the muscle my blood work will also look differently. I really think this is all because we are trying to do way too much this summer and my stress level is very high but when this summer is over hopefully our quality of life will be better and rest with relaxation will be a big part of every day life. Good luck with you and hope you can figure some things out too.

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