Last night I had to give myself the intramuscular injection, Avonex, in the leg. About 6 years ago, I was diagnosed with multiple sclerosis. It is an auto-immune and progressive disease that affects the nerves along the spine and brain. The problem is that there is no cure, only treatment. Imagine an electric wire. It sends electric pulses through the circuit and into the machine so it can work. But it has a protective rubber coating on it to protect it. Medical science does not know why this happens, but the body attacks itselft thinking the protective coating, myelin, is the enemy. Eventually the protective coating is worn down, lesions form, and the nerves are no longer protected. (As of now there are three in my brain.) The body forms scar tissue called sclerosis...over time there can be hundreds of these, thereby creating multiple sclerosis. The medication shrinks the lesions sometimes, and slows the progression. So I take the medication as a preventative measure, and am very pleased with the results. So far, so good.
But it does have its side effects, and it is always unpredictable: flu symptoms, fever, headache, body aches, extreme fatigue, and sometimes severe depression. One day, when I have another uneventful day, I'll tell you how I found out about it...Today, I woke up EXTREMELY fatigued...I didn't even realize it could be due to the medication because quite frankly, for the most part, I usually have no side effects. Last night was rough though. It took three tries...extremely painful tries. One time it was so painful because I couldn't get the needle to pierce my skin without feeling like it was a huge knife. I threw the needle and had a tantrum on the floor out of frustration. But I have become accustomed to the idea that I either go through the discomfort once a week or get worse, and one day possibly end up in a wheel chair.
So this afternoon, I recorded a few videos for my sites. It was just so much fun, especially in the company of my good friends who get my sense of humor. This experience reminds me that I have a unexplored urge to act in movies, or just be on the View, LOL. I am gonna look into it next week.
This evening I went to see my good friend perform at Caroline's in the NYC. She has just started to do stand-up, and after seeing her twice, I am certain she has the potential to make this a career for herself. She just needs to breathe; that's what I told her today. I think everyone should take a day and sing or dance or do stand up in front of strangers. Once you try it, you will treat people differently. You will be more compassionate. You will quickly learn how terrifying it is to put yourself out there, vulnerable and unsure if you can win them over. Once you experience the terror of your inability to control your heart rate, you will never again talk to someone while someone is performing. You will never again make fun or heckle another person. I've been heckled a lot. I used to ignore, perform and run off stage and lock myself in the dressing room crying all night. Now, I ignore then or I simply call them out. I believe a heckler is a very insecure human being who wants attention. So I give it to them...GOOD!!
Anyway, to my friend - and you know who you are - congratulations! Thank you for always making me laugh onstage and off as well! Remember, I said, "joooo can dooo eeet! " Muah!
You always so alive I almost forget that you even have a disease!! Poor baby!! Just want you to know I am still going to see you a 2nd time (1st time was in Whitestone Queens last year). Love Leslie xoxox
ReplyDeleteI must say that you are one of the strongest people I know. You are a ROLE model.
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