Thursday, June 28, 2012

MS and the stars

Last week the reports came in about Jack Osbourne and his MS diagnosis. I felt the emotional pain he must have gone through, remembering my own experience at 26 when I suffered from Optic Neuritus, lost my vision temporarily in both eyes, and was told I may develop MS one day. This was a time before MRIs, when the only 'official' diagnosis was via a spinal tap which I refused because I was afraid of the results (a cop-out, but my choice at that time).

Despite my denial, I was fortunate, as I hope Jack Osbourne will be. I was afraid and alone. So, I started a routine vitamin therapy on my own which - I believe - held additional exacerbations at bay for 14 years. I did not believe I would ever reach a stage of 'disability', but went on with my life and activities as if nothing ever happened: I road my bike in charity drives, I walked daily for exercise and for the love of walking, I travelled with friends and visited relatives overseas, got married-divorced-remarried, I skied, I danced, I did my gardening and yard work, renovated 2 homes, etc. etc. etc. Overall, I had a great life!

But gradually, the additional stresses of my job and the stresses of home life and my own belief that I could go without the MS medication for one year, finally led me to another exacerbation. This put me into the next reality of my experience with this disease - I experienced problems walking, and felt the wave of extreme exhaustion come over me at various times during the day. I couldn't operate 24/7 the way I used to, and multi-tasking began to wear me down. It was time to face the reality of my body's state and treat myself with care. I hope Jack Osbourne does the same so that he can enjoy many years of health and happiness with his new family.

I now walk with a cane at 54, and have a transport chair (my magical carpet ride) for longer stretches which my wonderful husband happily stears for me, I take my medication faithfully and restarted my vitamin and exercise/stretching regimen, I meet friends for dinner, walk my dog, make attempts to ride my bicycle, and have now transitioned to a gluten-free diet. Life is not the same as it was, but it's still a blessing to be alive and mobile!

My condition has taught me so many things about myself, my friends and family, work colleagues and my relationship with God. It is a crazy life, but the joy surrounding each of us every day is priceless. I always think of a little prayer when I'm feeling low which helps me to remember the reason why I'm here, "Thank you, Lord for all the things you have given me, all the things you have taken away, and joy to embrace another day."

Always find a rainbow in your heart!

Wednesday, June 27, 2012

Time Flies when...

It's a blustery afternoon. The wind is blowing around the corners of the front porch trying to catch the pages of the novel I'm reading to force me to the next page. The dog has found a sliver of sunlight to call her own and has planted her belly in a far corner of the porch which is free from these bursty gusts of luke-warm air.

I feel wonderful! Went to see my chiropractor this morning, who worked his magic and balanced me again. I knew something was not right due to my measured gait and aching lower back. His adjustments are like Heaven to me, removing the stress and tension. And maybe, for a little while, I can forget about this damn disease and imagine that I'm 41 and able to move through the day with no restrictions or balance issues. My Grandmother always said, "If you have your health, you have everything." She was right. But, for now, I'm thankful for these moments of reverie, lazing on my porch in an afternoon where the wind is pushing me to finish the last line of a chapter.

It's all good!

Tuesday, June 26, 2012

Sightseeing in my transport chair

(an older post that was never posted..)

I decided that since long walks were no longer an option for me, I would rent a transport chair so that my husband could move me around when needed to avoid my constant rest stops; yet, still allow me to get up and walk when we reached interesting sights to investigate, like shops where I could meander through the goods for sale and drop a dime or two;-)

Last weekend it also provided us with another use - go to a baseball game at Fenway in the rain! My husband rolled me into the park, and since it was raining - with a rain delay on the game - he took the opportunity to wheel me around the food and beer area so I could see all the changes that have been built into the stadium over the years. So much of the building has become handicap-friendly: no more stairs everywhere with no ramps. It was such a nice night even though the Red Sox lost to the Braves:-(

Before, I had to quickly find a place to sit. Now, I'm sitting on my own personal magic carpet:-)

Always keep your mind open for options! I've purchased this chair for my future adventures;-)


Wednesday, June 20, 2012

Summer Blues

It was a bad night last night. Just when I thought all of my weakness issues were under control, I was hit from left field: tried to get up from bed during the night and had no power over the lower half of my body to move. I had to wake my husband to help me. This happened to me once before, so I may be fighting a cold in my system, or the stress I felt this week put me over the edge. I'm ok this morning; just a little weak and tired. Fueling up on vitamins and staying out of the heat today to avoid any further issues. MS is a mystery. And, it's frustrating to go through these unforeseen moments that test your resolve and dash your sense of progress. I just have to keep on moving...

Never give up!

Monday, June 11, 2012


The progress that I want to make in my life, and the reality of these ongoing physical challenges, put me at odds. Yesterday was one of those 'bad' days: my legs were wobbly, my strength was at a low, and my exhaustion added to my 'delight' making me one sad couch potato:-(

So, I woke today with a new attitude, and a promise to my husband that I would pick up my exercises again, get back to writing, and build my world back up one step at a time.

Day One - off and wobbling;-)

Thought for the day: Nothing is beyond the reach of determination!