Archive for June, 2012

36

An Unlikely Source

“If you worry about what might be, and wonder what might have been, you will ignore what is.” ~Unknown

I recently got the chance to meet Larry Flynt. “Who’s that?”, you may ask? Well, he is one of the world’s most well known publishers of pornography and an unlikely champion of civil liberties. He is best known for his flagship magazine, Hustler, and his life was also featured in the biographical film, “The People vs. Larry Flynt”, starring Woody Harrelson and produced by Oliver Stone. The movie highlighted how Flynt set off a firestorm, dragging into the eventual fray Jerry Falwell, an evangelical fundamentalist Southern Baptist pastor, and the Supreme Court of the United States.

In 1978, Flynt released photos in his magazine of an interracial couple. This upset a lot of people including a white supremacist who shot Flynt leaving him with a speech impediment and paralyzed from the waist down! But Flynt went on with his controversial endeavors, he actually continued with his pursuits. In fact he earned much of his money after the incident. He didn’t let it stop him, despite his disability. He kept going.

Knowing he was wheelchair bound I wanted to at least see him. So after getting clearance from a multitude of bodyguards I was able to roll up near him. He then told the two young ladies sitting by his side to move so I could sit next to him. We talked for about three minutes, which was highlighted by me asking, “How were you able to go on even though being paralyzed.” ( I figured I could be blunt. He seemed pretty liberal. ) He simply said, “I just do what I can. I don’t think about the wheelchair.” I smiled said I appreciated his time, but thought to myself, I’m sure being a multimillionaire doesn’t hurt. After all, he was sitting in a $80,0000 gold plated wheelchair!

I guess it was his choice to go on too. Wouldn’t it be nice if we could just do what we can and forget the rest. I know personally I get irritated and feel defeated when I can’t accomplish things on my own, when I want, how I want. In my brief conversation with Mr. Flynt he gave me some great advice and inspiration to just do what I can.

And for that my friends I am very grateful. Sometimes you can find encouraging words from the most unlikely source.

42

I’m Moving On

“It has been determined that the use of a lower extremity functional neuromuscular stimulation device (the device I want) in the home setting as a technique to restore nerve function and provide ambulation as investigative therefore we are unable to approve the NESS L300… says Blue Cross.

So that’s the end for my dream of getting the Bioness foot drop system. Of course I can always purchase it without insurance, but it costs $6,000 bucks. AGH!!!

The letter arrived a few days ago, but I couldn’t collect my thoughts well enough to write about it. I really thought they might pay for it because they do cover DME (durable medical equipment). Nevertheless they won’t this time. I already appealed the decision and was turned down. I managed to console and convince myself that life with Thelma (my scooter) isn’t that bad. That is, as long as a ramp is provided.

I would also like to share that I was approved for the drug AMPYRA®. It is a medication developed as a treatment to improve walking in people with multiple sclerosis. It’s actually the first pill of its kind. To be honest I don’t know if that’s good or bad. Maybe this will be my best option now. I’ve had few friends comment that I seemed to be getting around better with my walker, so I’m going to count that as a postive result so far.

Despite my set back my spirit is not broken. Oh, don’t get me wrong I was devastated after seeing the rejection. Reading that letter was like being slapped in the face. I had put so much hope in it. But still I’m moving on. At least, that is…Thelma and I.

39

Up In Smoke

My husband and I recently saw a headline in the Canadian Medical Association Journal that read, “Smoking medical marijuana could help relieve some symptoms of multiple sclerosis”. I instantly began dreaming of buying a new house in California next to Montel’s medical marijuana dispensary.

The study found that people with M.S. who smoked cannabis have experienced decreased pain and spasticity. While, thank God, I don’t suffer from any pain, I do endure unbelievable spasticity and clonus in my legs. Sometimes they are stiff like planks of wood. While other times they shake uncontrollably. I currently treat this with muscle relaxers, so I began thinking, “Weed effects can’t be any worse on my body than prescription pills? Lets do this!”

Then reality (i.e. my husband) spoke up as he continued reading and revealed some bad news. People who smoked the study’s cannabis had decreased cognitive functioning and scored low on tests that measured their focus. This result was supported by an earlier study in the journal, Neurology, which also showed Multiple Sclerosis patients who smoked medical marijuana have a doubled risk of developing cognitive impairments. While I would love to improve my spasticity, I can’t afford for my cognition to get any worse. Some of my main issues have been with my inability to track conversations, general confusion and memory.

I suppose I should be happy because this may pave the way for continued studies. Hopefully they will examine whether different doses can result in similar beneficial effects with decreased impact to cognition.

But for now my cannabis cure-all dreams have gone up in smoke.

46

A Painful Lesson

It’s funny how our brain can sometimes play serious tricks on us. But there are just a few things we some how need to be reminded of every once in a while. In the midst of a personal pity party that I held just this morning I said to my husband, “I feel like I don’t have purpose.” He responded, “When’s the next time you go to the psychiatrist?”

This particular party was held after I woke up and had no place to be. It dawned on me that nothing seemed to depend on my presence. To be more accurate, I had no job to report to. You see the last career I had I held in high regards. Though I wasn’t a surgeon that saved lives, I took pride in my job. My life revolved around it. I guess I thought it gave me purpose.

Due to Multiple Sclerosis, I was forced to leave my career behind. So where does that leave me? What’s the appropriate amount of time I should bemoan its loss? Because at this point I haven’t worked or driven a car since 2009! You probably know that as I remind us both constantly.

I forgot that though I’ve exited the structured working world, I have still maintained my worth. Thankfully a good friend reminded me of that. Thank God for friends. I totally dismissed the advocacy work I’ve done with the National MS Society. I know I’ve affected lives with them. I also completely overlooked my impact here with this website! Something that started out as a safe place to go and vent has turned into so much more. You move me. You humble me. You give me purpose.

I’ve been taught to shy away from thinking that something outside of myself gives me purpose. Similar to the way I did with my former career.

Thanks for helping me learn that painful lesson.