Potsdam Fibromyalgia Support Group

Part 2 …

Last month’s Newsletter printed the first half of Linda’s speech at Fibromyalgia Awareness Day. This month we present the remainder of her speech.

My Journey is Still an Upward Climb

By Linda Dashnaw

ASSISTANCE

This is a blessing, not a curse. It has forced me to slow down. Now I can stop to smell the flowers along the way. I have permission to be human… to admit that sometimes I need help from others and be grateful for it.

Thank you, Lord, for helping me cope. Thank you, to my doctors and Leslie Russek for picking me up off the ground and giving me the strength to go on. Thanks to ALL the good and true “fibro friends” I found in our support group. The outreach programs you do touch so many lives like mine. Last, but not least, thank YOU – My family. You are golden. Mom, Dad, Sharon, Tom, Lisa and Devon, you are my lifeline. I soak up your love every moment of every day. You let me sleep in on Saturday mornings. You help me with chores. You raise my spirits and make me smile. Whenever I get all “stressed-up” with no place to turn, I know that I can always go home and re-group.

ADVICE

You know, everyone with fibromyalgia has his or her own, unique story to tell. It affects us all a bit differently. The more I hear about our symptoms, the more I think about my mother. She is a very sensitive caregiver. She needs to be needed. And yet – sometimes she cares too much. She puts herself last. She gives herself away until there is nothing left. I watched her as I was growing up. She was a basket case before every holiday – trying to get it just right. She would often say “I have been on my nerve over this” and that is how we felt as we tiptoed around her fragile moods.

She often took a nap before cooking dinner for my father. Her mind was so busy at night in the quiet that she could not get to sleep. Each winter, she suffers from seasonal disorder eagerly waiting Ground Hog’s Day to signal an early spring. I tell her, “Mom. I feel better now that I’ve given up hope”. She laughs.

I wonder.

How much have I acquired from living with her and how much is genetically transferred? Will my moods permeate my daughter’s personality or will she learn from my example? I watch her closely. Are those body aches growing pains or early signs of my mother’s legacy?

Where will I be in 30 years? How will I feel? How will I function?

Only time will tell.

I do know this. I am better prepared to face the future.

SPIRIT

I am very fortunate to be working in a daycare center. I thought I was there to teach the children but, they are the ones teaching me:

1. If at first, you don’t succeed, try and try again;

2. Mistakes are O.K. – sometimes even funny;

3. Ask for help when you need it most;

4. When you’re upset, you can walk away to a quiet place and

5. Keep yourself safe.

So keep a song in your heart for those rainy days… It goes something like this:

This little light of mine, I’m gonna let it shine.

Let it shine. Let it shine. Let it shine.

Let pain rule my life? NO! I’m gonna let it shine.

Drown in my self-pity? NO! I’m gonna let it shine.

Take away my spirit? NO! I’m gonna let it shine.

Let it shine. Let it shine. Let it shine.

Thank you.

August 12^th Massena Meeting

The group meets at 6:30 in the Community Meeting Room. Contact facilitator Maxine Dodge, at email maxinesbeach@wmconnect.com or 769-5778, to ask about the topic for August.

Fibromyalgia Picnic July 24th

The Fibromyalgia Support Group will have its annual summer picnic this July 24^th from 5-7 pm at Clarkson Hall. The picnic has always been a great time to hang out, talk about all sorts of things other than fibromyalgia, and laugh with friends. Potsdam and Massena members, family and friends are all invited. Put it on your schedule! It will be at Clarkson Hall, 59 Main St. in Potsdam, on the picnic tables in the front of the building. Rain location is indoors, on the second floor. For Massena members who have never been to Clarkson Hall, take Main St. out past the fire station; we are the 3^rd building on the right. There is ample parking in front and on the side of the building.

Please help Clarkson faculty do research on fibromyalgia!

The Clarkson University Physical Therapy Department is currently seeking people with fibromyalgia (FMS) to participate in a research study. We are looking at different tests of balance and walking ability, to find out how useful these are in measuring functional limitations experienced by people with FMS. Better understanding of these tests may help physical therapists measure and document functional limitations in people with FMS – this will hopefully allow us to ultimately provide better treatment for people with FMS. The project involves participating on 3 different days, each time for about 30 minutes. If you choose to participate, you will be given $10 for each session you attend, as compensation for your time and travel expenses.

The first session includes completing several questionnaires about your symptoms and your ability to do functional activities, as well as a practice 6-minute walk. The other two sessions will include a 3-minute walk and clinical balance assessment or a 6-minute walk and a computerized balance assessment. All participants will be given the results of their tests, so if you have ever wondered how good your balance is, this is an opportunity to find out.

Please help Clarkson become a regional center for fibromyalgia research and treatment! We need your help to succeed. If you are interested in participating or would like more information, please contact Leslie Russek at 268-3761 or email at Lnrussek@clarkson.edu.

If you would prefer to receive these newsletters electronically (and save a few trees), please send your email address to gilberta@clarkson.edu.

This newsletter is a joint effort of Clarkson University and Canton-Potsdam Hospital. If you would like to be removed from the FMSG mailing list, please contact us at the above email or by phone at 268-3786.

July, 2003

Part 2 …

Please help Clarkson faculty do research on fibromyalgia!