NEW CHALLENGES

Technically this is day 2 of a new month but new challenges can start any time.  I found a group of people I know also people I didn’t know until now who all have some form of a fitbit.  We have hooked up via the fitbit website and now we do weekend warrior challenges as well as, work week hustle challenges.  It is a fun, friendly way to stay on track with our steps.  Especially since now I’m spending so much time on my yoga mat and trying to work and keep a house-hold it is hard to get as many steps as I was before.  Being invited to these type of challenges is really fun.  We started our weekend warriors challenge Saturday at midnight and it will run until tonight at midnight.  We then have a work week hustle which will start midnight Monday morning and run until midnight Friday night.  No, I am not walking at midnight and won’t start my steps until 4am but because my night ends before many other people they are still up getting their steps in after I have gone to bed so I try to get as many steps in as I can while I am up and about.

During our golf season it was easy to rake in the steps without much effort at all.  Today in Maine it is actually snowing for the first time this season and it keeps us inside.  I am making sure to keep active but I also had 3 hours on my mat so while I’m doing my yoga I am not adding up any steps.  Good thing I’m not that competitive and this is all just friendly competition.  The goal is to try and stay in the 15k per day in order to keep up with the group so my mind is just keeping focused on my yoga and staying active as much as possible when I’m not on my mat.  As I type this I’m on my feet moving around.  I don’t know if I will win the weekend warriors challenge but I’m giving it my best shot.

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5 thoughts on “NEW CHALLENGES

  1. Andrew November 3, 2014 at 12:55 pm Reply

    Hi Nicole,

    I commented once before about my girlfriend with MCTD and how I followed your blog to help her and also myself in navigating her MCTD and hopefully being part of her better health. I know you are not a Dr. but you seem very much on top of your game.

    We have been together a year. I’m not going anywhere. I hope ever.

    For a couple of months now (End of summer, Return to a challenging job, relationship moving to new levels) she has seemed “on the edge of flare”. Achey, occasional cold sweats, lethargy. My question is, when is “on the edge of flare”, not so “on the edge”, and is being on the edge for a length of time risky for permanent damage. Her MCTD is said to present like lupus. In general, it seems mild relative to what you read on the scary mayo clinic sites. For obvious reasons, she is like you in trying the anything but prednizone route. I try hard to help her. Cooking healthy food, learning to make gluten free not seem like a special diet, reduce stress by taking off her full plate whatever I can (though relationships can be stressful at times, especially when “blending families”) but I also try to be an objective observer. I know the power of wishful thinking and denial. So I try to keep a mental log of little episodes to see if they add up to a single larger issue. Its a balancing act because I also want to be a good boyfriend, be enjoyable, not be annoying, but I also don’t want her to deny herself into a worsening health situation.

    Have you experienced periods of this borderline flare? Maybe it is just the “normal” part of living with MCTD. I am just trying to learn the difference as She is the person who might “deny to perform”, at the expense of her health. Hope not too rambling.

    Thanks Andrew

    • mevsmctd November 3, 2014 at 3:19 pm Reply

      Hello Andrew
      First you should know how wonderful it is that you are invested in her health. As someone with an extremely supportive husband and family I know how wonderful that really is even when I forget to show it due to fatigue, lack of energy and sheer grumpyness. We need people to see us from outside ourselves to ensure we don’t push too hard but push enough and you helping her is wonderful. As for flares, if she has to do anything different when she is flare that she doesn’t do when she is not then in my unexpert opinion I would only a wait a day day of being on the edge. However, if nothing changes for her and she doesn’t have to up meds, or isn’t required to bed rest than that being on the verge can last several days. In my case I do not do anything different when I’m flare or not but when I’m in true flare I can only be in bed. My legs, mind, and heart will take me no further and that is when I know I’m no longer teetering but in full blown flare. There are several days leading up to that flare where I’m achy, exhausted, but still functioning in the world. When showering becomes the biggest chore I can accomplish I know my body has had enough and bed rest is required.

      You mention Lupus and I’m not sure what she is dealing with but for me I know I don’t have Lupus because all my internal organs are functionally normally, if the damage you speak about is her internal organs that that part of Lupus I wouldn’t teeter long as we don’t know what this disease does to the insdie of our bodies. If she has a good working partnership with her doctor they should form a game plan for her teetering with flare episodes as some can come and go without no real effort or pain while others need to be looked at more closely. My husband says that when I’m teetering that is the time when I need to buckle down the most and eat perfectly, walking just enough, lift the weight that I can truly endure without great effort, and sleep just an hour longer each night and when I do I can usually get back to base line quicker. Perhaps she can too. I wish you both the best of luck during your journey and keep us posted on how she is.

      Nicole

      • Andrew November 17, 2014 at 4:12 pm

        Thank you so much, I have been observing and trying not to be a nervous nelly but rather a helpful eye. She does make it to work, but I (with pleasure) do find myself rubbing the achy joints of a not too happy camper a fair amount. I know she has had bad flares in the past (week in bed, corticosteroids, hair loss) but since I have known her, the worst I have seen is a few hours of pain, chills, sweats, and frustration. This worst seems to be helped by a dose nyquil pills with anti inflammatory and a sleep aid. She tries hard to be religious about sleep, but she’s a mom and a teacher. Teachers do not work only at school as you may know. And moms… Sounds like she needs to see her doctor, but is otherwise pretty on the ball. I’ll keep trying to feed her good food and be supportive when she just wants to hang and be quiet.

        Your blog is a real tool for me to learn without excess intrusion or annoyance. Thanks again for sharing all you share.

  2. Andrew December 1, 2014 at 3:00 pm Reply

    FYI, a visit to the Dr. a B12 shot has made a huge difference. A short, low dose, one week run of Prednisone, while not exactly what she wanted was prescribed to head off anything which might be in the offing, but the B12 had an immediate effect. Energy, mood, the works. Its possible the general nature of MCTD may inhibit normal B12 absorption, leading to anemia. I don’t know if you have had B12 shots, but I certainly am interested to see if that could safely be used to reduce the exhaustion and stress which seem to lead to episodes. Will keep you posted.

  3. mevsmctd December 1, 2014 at 8:17 pm Reply

    Thank you for the update. I have tried the B-12 shots but have not had much luck, however many people do feel much better so if it works that is wonderful news. I hope she is back to her base-line very soon. Every little win is a huge success.

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