Friday, March 18, 2011

MS Awareness Week - one thing

With everything going on this week in the world I've neglected my usual MS awareness week posts and opted for more upbeat topics like Irish recipes...however the Irish guilt crept in the morning! So this year I am doing an awareness post...but just one post!Last year interviewed by a very precocious 12 year old for her class project and she asked, "if there was one thing you wanted people to know about MS what would that be?"Good question! I think it would be that there is no one version of MS. (This may also be the thing about MS that really is the most frustrating!) Just because you have a relative that was diagnosed with MS and "she ended up in a wheel chair after only a year" or "once in awhile she has to take it easy but she is still working part-time" or even "heck she was diagnosed three years ago but she still teaches aerobics three times a week." Those are all faces of MS.

On the National MS Society website this is how they describe MS symptoms:
"Symptoms of MS are unpredictable, vary from person to person, and from time to time in the same person. For example: One person may experience abnormal fatigue and episodes of numbness and tingling. Another could have loss of balance and muscle coordination making walking difficult. Still another could have slurred speech, tremors, stiffness, and bladder problems. Sometimes major symptoms disappear completely, and the person regains lost function. In severe MS, people have symptoms on a permanent basis..."

There is very little predictability and if you have even a hint of Type A personality that can really drive you crazy. (Or it can drive you to change...is there such a thing as an A- personality?) Perhaps it has just helped me focus and/or pick my "battles." (For instance I have started the Sprigs and Stars Quilt by Kim McLean but I drew the line on the borders - a wide fun border with printed vines and flowers will substitute for appliqued vines and hundreds of leaves....)

On the other hand the lack of predictability makes planning difficult. For instance I have been planning all year (no make that many years!) to take the exam for AQS quilt appraiser certification this April. I had an episode last month that has left me with fatigue and word choice issues that just aren't resolving themselves as quickly as in the past. So I arranged to go to Paducah a day early (Tuesday) which may help me rest up after the drive however I am still worried. The written exam is from 6-8 pm on Wednesday (which is 7-9 on my east-coast-body time.) That is about the time I wind down even on a good day... Yes there are drugs I can take to help with it (Ritalin or Provigil) however I can only take them for a limited amount of time without suffering a "backlash." (And just my luck they'll start drug testing for quilting competitions!) My oral exam is scheduled for Saturday at 2:00...for a person with MS that is the equivalent of a marathon week!

So my challenge for the exam is not going to be can I identify the type of quilt, date the quilt, have I looked at enough quilt sales data...it will be will my hand hold the pen, can I write legibly, can I stay awake, and can I speak clearly....and until the day arrives I just can't predict the answer to those questions.

18 comments:

jovaliquilts said...

Thanks so much for sharing this, it really helps to increase my understanding. I have always been impressed by your wonderful attitude! I'm pulling for you on the quilt appraiser exam! Good luck!!

Judy in Michigan said...

Yes, thank you for helping us understand MS - I never really understood much but I had little glipses when you would tell us about a problem you were having. I think that all of your blog-followers will be praying for you from now until the exam is over (and beyond I'm sure). You are a special person in my bloggie world.

Tonya Ricucci said...

have you asked if they can rearrange your exam times???? I know you've so been looking forward to this...

Impera_Magna said...

Tonya has a point... have you asked if they would provide the testing accommodations/modifications you need to help "level the playing field" under the Americans with Disabilities Act (ADA)?

sewkalico said...

I will be holding thumbs that this does not cause you too much anxiety and stress which will be even more counter-productive. You are an inspiration to me and I know you will do the best you can under the cirumstances. Thinking of you... xka

sewprimitive karen said...

I hope they can make some accommodations for you. I know we all wish we could wave a wand and take MS away from you.

Teresa said...

Thank you for the information and the brave frankness with which you share your journey. I cross paths with 2 people in Michigan who share your journey, and you are absolutely right...those three display very different symptoms and limitations...and they do change, for worse and for better. It is worth a try to reschedule your tests at times of the day that are better for you. But if you are like my friends, you don't want to make a fuss. Good luck with whatever you decide! Hopefully you will be able to focus and draw on all the positive energy that comes from having so many lovely quilts in one place for a week!! Best Wishes!

In stitches,
Teresa :o)

O'Quilts said...

Good luck. Remember that Walt Disney filed for bankrupcy 5 times before he founded Disney World. You have the spirit. We gotta keep on going. I will be sending good thoughts your way.

Debbie said...

I am wishing you the best of luck with the exam. My husband was diagnosed three years ago with MS so I can relate to how it can affect each and every person differently. Saying a prayer that the exam goes fantastic for you!

*hugs*
Debbie K

Janet said...

What a beautiful applique block to go with this post! There is lots I don't know about MS - it is good to learn some. I hope the quilt appraiser exams go well!!

Nancy quiltin' momma said...

Thanks for sharing about MS and the quilt appraiser test you are about to embark on....I will be praying for you!

quiltmom said...

Sio,
I hope that all goes well and that your body cooperates for you. MS is such a challenging illness- I have a good friend who has it - she tries to find the balance between doing the things that she wants and listening to her body and its challenges. Sometimes the challenges win the battle - other times she is able to find the delicate balance of rest, food intake and reducing stress. This past year she has lost a significant amount of weight( by choice)and she says she feels better but her vision remains a serious issue as does hand function. The hardest part is when she has an episode & she finds that she has lost ground that has taken her months to regain- sometimes it comes back eventually other times it appears she has permanently lost her gains. She was my educational assistant( very good at her job) and she is no longer able to work because of the fatigue. Last summer she went to Mexico to have a special treatment as the doctors here can not find a medication that is working for her- the treatment did initially work but it remains uncertain if it will have lasting effects.
I am wishing you all the best for the quilt appraiser's exam.
Warmest regards,
Anna

*karendianne. said...

Sio, what an excellent example of real life with MS. I appreciate the truth of what you shared here and I know from personal experience this stuff is difficult to talk about sometimes. What a shining example you are. (you'll note I didn't do a post this year) *karendianne. feeling like the MS time bomb is ticking rapidly lately

dianne said...

i believe in you!!!

if AQS read your blog, they would have proof positive that you are MORE than qualified ... i can't even begin to tell you how much i have learned from you ... thank you for being here

Penny from S.C. said...

Here's praying that all goes well for you. God know our needs and desires and always come through in the way that is best for each of us, never the same, but always the best! God Bless!

liz said...

What a clear and precise explanation of how unpredictable MS can be. Good luck at Paducah!!

SCquiltaddict said...

Quit worrying Sio...you have done your diligent BEST to be ready for the big test...in the meantime all the worrying does is stress you out...let it go!:>

Alwayskeptintap said...

Thanks for sharing! I agree w/ Tonya and Impera, ask now if they will make accommodations for you to take the exam at a more fitting time for you. Wishing you well earned success on your exam! Cathy