A.S. Face 0276: Margaret

Margaret………….  One of the many Faces of AS

I have lived undiagnosed for many years. (35)  I received my “title” on April Fools Day 2011,

and I just turned 50. Long time coming, but at least “IT” has a name!

Ankylosing Spondylitis…

(even the spell check doesn’t recognize it)

Over the years AS has taught me many things in my life;

  • · First and foremost “IT” taught me I was not NUTS ! There were very good reasons why I was having the reoccurring, crippling pain which only compares to agonizing back labor during childbirth. There really is a reason for my “pain in the neck”.  All those times I wasn’t faking it. I really wasn’t. There actually was something medically wrong with me.
  • · I also learned, under no circumstances, to never shop with out a shopping cart.  There have been times I’ve gotten “stuck” and had to wait for one of my teenagers to swing past me in the back of the store, only to go get a cart for me. (sucks when your shopping alone)
  • · When my body “flares”, the fish seem to bite …. (maybe a weather/ pressure thing?)
  • · In a balanced, kind of up-right position, I can pick just about anything up with my toes!   Lego’s, Crayons, Hot Wheels …..  The list goes on and on…..
  • · Another lesson learned – Nap Time. It is the best part of the day!  And it should be used for just that! Dishes, laundry could wait….. I knew I must rejuvenate…20 minutes is all it takes… do it for the family’s sake.
  • · Always made sure I had a wooden, armed, chair….. It would be my savior…“my chair“…. It can be almost impossible to get out of soft furniture. I like to keep my chair in the TV room… sometimes it ends up in the bedroom, it is an excellent place to sit and stretch 1st  thing in the morning.
  • · I’ve learned that on “difficult” days, it easier to bring all my clothing to one place- “my chair”. Put it all on while sitting, then stand to “pull it all together”  (it’s also easier to put on shoes and socks)
  • · AS has also taught me to keep Ace Flexible icepacks readily available in freezer, and the heating pad hanging on the head board. (isn’t unusual to move around the house with an icepack tucked in the back of my pants)
  • · I’ve learned to NOT trust many Dr’s. Especially the one (1990) that after 3 weeks of unsuccessful  PT told me, as I crawled into the exam room, “ if you lose 50 lbs. you wouldn’t have this problem” Or the Rheumy that told me (2011) “you just need a vacation, just not to Japan” (not too long ago… just days after the tragic earthquake) .
  • · Patients CAN fire their doctor!
  • · Growing pains DO NOT last into your 40’s and beyond…..  Really, not sure if there is such a thing!
  • · I learned how it must feel to have a “hot poker” stuck in the eye. Fire red eye and it’s NOT “catchy“.
  • · My favorite slippers are a pair of running shoes… nothing better than a good pair of shoes.
  • · When the person parking in the handicap spot walks easily w/o trouble, may NOT be able to walk tomorrow
  • · AS has taught me to never give up and always push on!  The extreme, disabling, 10+  pain, shooting from my lower back to my foot, will soon pass. Well maybe not…. or at least it always seems that way. (so thankful it’s only one at a time)

Through out my life, I suffered with out really knowing what was wrong with me. Being a single mother, raising two children, I’ve learned how to be strong, put the pain on the back burner (when possible), work hard and live my life.  I never let “IT” get me down or get the best of me.

But now, more than not, “IT”  IS  getting the best of me.  Every Dr’s appointment seems to be more prescriptions, more side effects,  more diagnosis’ – a vicious cycle. Even now I still wonder if there isn’t more going on with in me.  My current “Rheuy” tells me “your getting what your supposed to get… you should be better”  Am I NUTS again?  Or  are the Drs. wrong again?

So,  recently AS has taught me a few more things….

© I’ve learned to listen to my body… unfortunately it still “screams”!

© I’ve learned to slow down, and take special care of myself.

© Pause, breath, and “take in life”

© Most importantly, I’ve learned to put myself  FIRST so that my family and I will get the “ BEST” of me.

Margaret, just one of the many faces                                     Michigan, United States of America

10 Responses to “A.S. Face 0276: Margaret”

  1. Dear Margaret,
    Thank you so much for sharing your story with us. I loved it.
    My favorite part and one I plan to learn well is…
    Most importantly, I’ve learned to put myself FIRST so that my family and I will get the “ BEST” of me.
    Sincerely Cookie

  2. I enjoyed reading your story. Love that phone booth/toilet shot too

  3. Margaret,

    May I show this to our support group to help?
    Thank you and much love!

  4. Thanks again Cookie! Kristen, it’s an old phone booth, and Jacquie, of course you can show this…. we all have to find the light heartedness in this “wonderful” thing we have….. otherwise it’ll drive us more crazier than THEY already think we are!!

    Thanks for allowing me to be a part of this !!

  5. Loved how you shared your story. Thank you. I, too, am 50 and have learned a lot about AS and what I can and can’t do–and how I can do more than I thought. Hang in there. Elizabeth face 40

  6. I love your MOXI Margaret. I too just learned yesterday that “spell check” doesn’t recognize AS!! ( I’ll bet it can spell Ruematoid Arthritis -those damn RA’ers).

    I love the part about “picking up crayons with your toes…” I got me one of those “claws” a few years ago… the one “Billie Mays” sold. Best thing ever. Bending over to pick up one sock is SUCH a wasted effort (of course now I spend endless time debating with myself whether to just bend over or go search for the claw).

    I see you’ve met our freind iritis. Keep him stuffed in his bottle.

    Have patience with finding the right “cocktail” of meds to treat AS. We are all unique.

    The more I read these stories-the better I feel. Thanks Margaret!

  7. Thank you for sharing your hard earned wisdom!

  8. I loved how you shared your story Margaret. I sure could relate to your list. LOL I will be 50 in july. I’ve had symptons since I was 20 and diagnosed at 35. Oh, how I would love to be able to put socks and shoes on again without it being such a chore LOL. Loved the photos also. Thank you for sharing 🙂

    (face 199)

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