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One Wobbly Step after Another....

Saturday, November 26, 2011

Doesn't it just figure? I have my new iPod Nano strapped to my wrist...I have motivation to burn...I have a new treadmill (which I haven't even tried out yet)...For once I WANT to exercise.....

So what's holding me back?

My body. (Feel free to be creative with adding a few adjectives in there).
I'm in the midst of a whopping flare. My body is swollen beyond recognition and pain is incredible. Exhaustion is a formidable foe as well. Yesterday, despite the early stages of "flare-dom" I had to go out for the entire day with my family...my visiting daughter and her boyfriend and my husband....to go and gorge ourselves on Japanese food and then walk ...and walk.....and walk at store after store. I had to use my cane which I haven't used for a while...and even then had great trouble staying on my feet. Even joints which had been replaced were hollering at me...which somehow seems to not only be unfair, but somehow breaking the rules.

But with this disease, there ARE no rules. I'm open season. It can shoot at me at will.

I"ve just discovered that I likely have Ankylosing Spondylitis in addition to the Psoriatic Arthritis (which is a twin sister or Rheumatoid ARthritis)....In AS the spine gradually becomes fused into one solid piece of bone....Forming a fragile, brittle spine where fractures can occur at the least provocation --and thus paralysis and even death are real possibilities. I have a bloggie friend who died of AS just about three weeks ago...and I'm still mourning the loss of her in my life.

In a week or two I have two appointments in NYC. One is with a famous rheumatologist at Joint Disease Hospital and the other is with a Spinal surgeon...to see if there isn't ANYTHING which can be done to at least reduce the chances of total paralysis.

But all this gloom and doom aside; I'm starting to feel some motivation once again to get my body in check weight wise and to TRY to strengthen it as well. Now that my downstairs is somewhat back in place post Hurricane Irene and the flooding she brought, I can work out in my 'gym" down there. I do have to tell you that that treadmill scares me to death. Its slow speed seems to me to be more like "full -speed-ahead" and it's a pace I'm not sure I can maintain with out tumbling off the machine.

Thanksgiving was just over the top in terms of how much I consumed. And that was maybe a good thing...becuase it was enough to turn me off and make me sick. Sick of being fat. Sick of eating garbage. I actually right now, have a kitchen full of healthful
ingredients...and very little junk so maybe it's time to get serious here, don'tcha think??

For a few months I've been floating around the outskirts of Sparkdom...and just this past week agreed to colead the RA Team. I'm actually excited about this...and hopeful that it will pull me once more to the "center" where I need to be in my mindset and in my involvement here at Spark.
So once more, I"m speaking big words of enthusiasm...but this time with the knowledge that they will have to be followed by tiny steps...because right now, that's all this body will do. But the trick is to get moving in the right direction. Just to move.....and to keep moving.
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Member Comments About This Blog Post
  • KASEYCOFF
    AS is one of those seldom-heard-about diseases that can be so devastating to cope with. Keep us posted after the medical appointments, please - my thoughts and prayers that they can help you turn a corner to better health...
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    3220 days ago
  • _LINDA
    So sorry you are in a massive flare :( There is nothing you can do except ride it out, or get better medicines working for you...
    I never would have chosen a treadmill for working out with your condition. You can't afford the impact. You would be better off trading it in for an elliptical or a recumbant bike or even an arm cycle. Even when my knees were grinding bone on bone and I couldn't walk anymore, I could still get on my elliptical with far less pain. Not having impact, but a great exercise is worth its weight in gold during flares and other road blocks..
    But pool exercise by far is the safest for you, wish you had one you could get to. I miss my pool workouts, had to stop them because of nasty cramps I get from my bad toes running up my leg.
    Hope you feel better soon,
    Hugs,
    Linda
    3223 days ago
  • no profile photo CD11085420
    Thanks for your inspiring words! I have RA,too, and know what a challenge it can be. I have to get it on doing more strength training, as I can feel the strength ebbing away some days.
    Thank you so much for co-leading the RA team!
    I am going to LIVE while dealing with the disease!
    I go to my wonderful Rheumy doc on Dec. 12th. I hope he notices some of the improvements SP has helped me achieve.
    WOOHOO!
    Keep moving! WE CAN DO IT! Baby steps will get us where we need to be! Progress, not perfection!
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    3223 days ago
  • HMKITTEN
    Oh, I understand wanting to add all sorts of adjectives to my body some days, I am sure some of yours are colorful too!

    I hope that the new doc has good news for you and that you can put that energy to good use.

    Till then, many prayers of healing headed your way!
    3223 days ago
  • no profile photo CD5645667
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    3223 days ago
  • REDRUDY5
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    3223 days ago
  • VXWALL1942
    Thanks for writing of your challenges. You enthuse and inspire me as I see you accepting. How great that you have the motivation to move, albeit in small steps. Would that I could accept so well. Would that I could take my life day by day, and find the elements that would bring me from point 'A' to point 'B'. Instead I sit on the sidelines absorbing someone else's commitment. You will be a great co-leader as you share your continuous ability to function - Never give up!
    3223 days ago
  • MARKSTIPANOVSKY
    Thanks for writing some interesting stuff and supporting me on my journey. Have a great weekend and keep focused and using the time wisely. All the best - Mark

    PS. There is always something to be done - I was paralysed for six weeks many years ago and told would never walk again... Can run - never mind walk. Hope you find something that works for you.
    3224 days ago
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