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Old 10-24-2010, 10:04 PM #5
PegMeerkatz PegMeerkatz is offline
Junior Member
 
Join Date: Oct 2010
Location: Lido Beach, NY
Posts: 47
10 yr Member
PegMeerkatz PegMeerkatz is offline
Junior Member
 
Join Date: Oct 2010
Location: Lido Beach, NY
Posts: 47
10 yr Member
Frown My history with ms

I had symptoms going back to my mid-teens; extreme fatigue following my softball games; sleeping for days after a bike run (I did marathon bike rides); weak limbs; sometimes blurred vision when I was overheated. However, I was heavily involved in alcohol & ah... other substances. So everyone attributed it to that. There was nothing serious enough to cause any long lasting symptoms. When I was 22 I was in a car accident - of sorts.

I was gettting onto a parkway & had a tire blowout. There were 3 of us that experienced the same things (something was sticking out of the curb). We were about 20/ 25 feet off the parkway up on grass changing tires. A young man stopped & was changing my front right tire. I was leaning on the side of the car; a small hatchback. A drunk driver getting onto the parkway saw the thing sticking out of the curb & swerved to avoid it (I am told), he lost control & struck the back of my car (I was the end car).

I woke up in the hospital with a concussion & a fractured elbow. I was told I was thrown over 20 feet. The young man changing my tire was killed when my car came down on top of him.

Following the accident I started having symptoms unrelated to the accident; mostly weak limbs & coordination problems. Doctors spent a great deal of time trying to say it was the drugs & alcohol &/or it was all in my head but when my vision became affected someone gathered all the test results then did a spinal tap as well as some visual tests which confirmed multiple sclerosis; I was 23 years old.

At the time I was diagnosed there were no medications & the doctors knowledge was limited. They call it a time of diagnosis & adios. I eventually got weak enough to be in a wheelchair. By this time I was trying to get clean & sober & had began college after almost 8 years away from school.

I got & stayed cleaned & sober earned my degree & advanced degrees & began a short career as a drug & alcohol counselor working with mentally ill adults; the underserved populations homeless, adult home (deinstitutionalized mentally ill) & those abandoned in nursing homes.

About 10 years ago I started having MS cognitive problems & following an MS relapse I was advised to retire.

9 years ago after 16 years clean & sober & discouraged by having to retire, having to sell my condo & return to NY I relapsed.

With the help of my good friend (therapist, mentor, my everything) I got back into recovery & have almost 7 years clean & sober again. Sandra started out as my psychiatrist helping me get clean & sober & work on family issues; I saw her for over 20 years. She was a couple years older than I am & had lupus. We became friends over that time.

Sandra's birthday was in December & I could not reach her. I was supposed to see her the 1st week of January 2003 & she called & cancelled she left a message on my voicemail saying she was not feeling well but would be in touch. I kept trying to reach Sandra after that but she DID NOT call back then her voicemails were full (home, office & cell phone). On the morning of my 3rd anniversary clean & sober January 16, 2003 I KNEW something was wrong. Sandra promised to be there & I still could not reach her.

Sandra rented her office from a psychologist. I called the psychologist when Sandra's voicemails were still full. He very matter of factly said "Sandra died a couple days ago" & he hung up on me. With a little detective work I reached Sandra's husband. She contracted an infection & then the lupus began attacking her organs. Sandra's husband made lots of promises; he was going to return all of my journals (Sandra had my journals dating back to childhood); some books & other things that she had borrowed as well as some chotskies I gave her over the years. Instead a few weeks later he changed his numbers & I could not reach him. I not only lost Sandra I lost a good chunk of my life.

I have struggled almost every day of my 48 years (I will be 49 next month) & with Sandra I could handle almost anything that came along but when Sandra died a part of me died. I have not been the same & do not think I will ever be the same again. She was my lifeline.

Now the MS is secondary progressive bringing it with it massive limitations & challenges & most days I find it just too hard to cope & often retreat to my bed for days at a time. There have been other therapists since Sandra, I am seeing one now but it can NEVER be the same; Sandra was a part of me.

I HONESTLY BELIEVE that I would be coping a lot better with the MS & a lot better with life if only Sandra were here.

Many people live by the acronym WWJD (what would jesus do) I DO NOT believe in god but almost every day when faced with some difficulty I think WWSD? (what would sandra do)

Last night as I flipped channels on TV Suzy Orman was on & saying something about life not being short & how people can live 85 or 90 years or more. All I could think was how in the world can I make it to 50 never mind 80 or 90.
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"OUR LIVES BEGIN TO END, THE DAY WE BECOME SILENT ABOUT THINGS THAT MATTER"
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chronic pain, cognition, coping, new member, secondary progressive ms


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