Hoochie Mama

"Cultivate your curves - they may be dangerous but they won't be avoided." ~Mae West

A friend and I were going for a walk at the mall combined with shopping for two 'must have' additions to my wardrobe: a pair of black dress pants and a gray skirt. She understands about my SPS, so was unfazed at my army camouflage print baby stroller (surrogate walker) to carry my 50lb. purse, hiking pole, and bottled water. With my SPS perception, going into a mall is leaving rear flank obscurity to charge from the front line in an active war zone.

I love to go shopping with a girlfriend. Unlike a man, girlfriends are not bored to a glassy-eyed catatonic state while you are in the fitting room on Mission Impossible to find a good fit to enhance your figure--for a reasonable price. When you need an honest opinion, a girlfriend will give it to you straight, not a beleaguered, cookie-cutter, "It looks great, Sweetheart. Ready to go?"

I found a church-appropriate length pencil skirt. On my slender frame, I looked like Olive Oyl. Opening the door, my assessment was confirmed with my friend's opinionated, "You need a shorter skirt."

Girlfriends also understand the importance of color. Charcoal gray or pale gray. "Go with the light gray. Summer is coming," her female wisdom suggested. I hadn't thought of that. So the shorter pale gray skirt it was.

Sunday morning, I decided on wearing my new pale gray skirt with a black sweater and lacy black nylons. SPS decides to wrestle with me. After a 10-minute aerobic, contortionist match on the couch, I triumphantly donned my fashionista pantyhose in a victory over SPS symptoms.

I was feeling fashionably good as I went to church. My girlfriend approached me with a big smile and said, "You've got your hoochie mama skirt on."

From Olive Oyl to a hoochie mama. I have to plead innocent. I was influenced.

Copyright © 2011

Man Against The World

“Pain is no evil, unless it conquers us” ~Charles Kingsley~

I loved this song before diagnosed with SPS. I love it more now. It could be a theme at times, the feeling of me against the world. Alone, embattled, abandoned. Ironically, this song is by a group called Survivor.



“Victory at all costs, victory in spite of all terror, victory however long and hard the road may be; for without victory there is no survival.”
~Winston Churchill~

Copyright © 2011

SPS Activity Budget

“We don't see this as a budget exercise. It's about management excellence.”
~David Barna~

SPS is a wicked step-mother with a Scrooge mentality of miserly. Every morning I timidly approach this domineering presence with my syndrome weary hand extended for a few pennies of ability. Gnarled fingers rattle the clinking coins from her full apron pocket in a cruel tease. I hold my breath in anticipation for the meager offering of the day. Will I get a few extra pennies today?

Shining with promise, I count the worn, dull coins in my open palm. How can I make the most of today's offering. What shall I spend my limited treasure on? What shall I sacrifice?

Budgeting my limited ability within medication opportunities is a daily SPS management skill. The challenge is to come under budget. Today's deficit will compromise tomorrow's spending--an overdraft with late fees--also known as a down-on-the-couch day with extra Aleve.

Saturday was difficult as I struggled within the limits of spending my last coins of the day. With nostalgic remorse, I remembered when I complained about effortlessly leaving the house to run to the store for a forgotten ingredient for supper...pre SPS. Sometimes the reality of having an ambitious mind within a challenged body is revisited heartbreak for me.

But the optimist in me resurfaces and is thankful for those precious coins I am given. Because of SPS, I realize the value of a moment. For my health, stay within budget. For happiness, do not hoard. Spend. Spend wisely.

“We're on a limited budget. And I think we've spent every nickel of it.”
~Jeff Smith~

Copyright © 2011

NORD SPS Research Grant

National Organization for Rare Disorders Awards Grant to Support Research in Stiff-Person Syndrome

I am really excited about this research grant for several reasons.

1) NORD will distribute this media release to approximately 11,000 contacts. Lundbeck released it on Business Wire. (I do not know how many that will reach.) SPS will get some serious exposure...awareness for us! ;)

2) Lundbeck's continuing interest & involvement in NORD's outreach through Rare Disease Day sheds light on how many are touched by a "rare" disease. One in 10. Sobering and humbling we were chosen for their donation. I am grateful.

3) The NORD SPS research fund, gifted by several small donations through the years, became a collective research grant of benefit. It takes many to achieve something great. ;)

4) NORD has always been an informative source of support and information for 7,000 rare diseases. They were my first outside contact when I was diagnosed in 1994. They have greatly expanded and continually work for the rare disease community.

5) Rare Disease Day has grown to epic proportions--worldwide in conjunction with Eurodis, facebook, media events, blogs...in a continuing effort to educate and impart understanding to a world unaware of the millions who are afflicted with a rare or orphan disease. Last year's USA Rare Disease Day front liner was an SPS story about an amazing woman with Paraneoplastic SPS & her dedicated husband. (I think highly of this couple.)

6) Research brings awareness, but it also inspires hope. Another puzzle piece may be discovered, a better treatment, maybe a cure! ;)

I hope this research grant gifts you with encouragement that with time, every little thing "one" may do or give can culminate into a major accomplishment. Tom Revenaugh & Stephen Hyde were SPS friends who have passed. Both designated their memorial tributes go to the NORD SPS research fund. I am taking a moment to honor their memories with their contributions to this grant.


Hope on the wings of angels.



Copyright © 2011