First off, to anyone reading this that has already seen an email from me or the note on Facebook, this is NOT a pity-party! I’m not asking the question. I’m going to answer it!
To bring the rest of the regulars at my cyber coffee shop up to date, I have my official diagnosis from Cleveland Clinic. I have MS, PPMS to be exact. That’s Primary Progressive Multiple Sclerosis. The disease is not fatal, I repeat, NOT FATAL. It is, however, incurable, at least right now.
MS is a disease of the central nervous system that claims about 400,000 people in the US in its ranks, roughly 1%. Boy the percentages always get me. I’m never in the middle. I’m 100% looking at the best side of things, 100% loyal to my friends and about 98% optimistic, which makes me about 2% cynical. I’m also, as a Mensan, 2% smart and now I’m 1% sick. Actually it’s smaller than that. The primary progressive form of MS applies to about 1 in 10 people with MS. So I’m not alone, but still relatively unique!
Don’t think I’m taking this all lightly, or it hasn’t hit me yet. It’s a life-long but not life-shortening disease. I have a choice. I can be devastated and depressed and waste myself into dark brooding or I can face it, make adjustments and move on without losing any my joy for living, since I still have a lot of life left. Which do you think sounds like a choice I’d make? It was an easy choice for me. I don’t do dark and gloomy well.
So, why me?
Why anyone? If it were truly up to me, no one would ever get an incurable disease. But they do happen to people and this one happened to me. My attitude makes the doctors and nurses smile. That makes me feel good. Maybe there has to be a certain number of people who have a positive attitude to encourage the medical professionals and inspire others that are inflicted. Maybe that’s why me.
I can be outspoken and I’m a decent writer. Maybe I needed to “have” something to do the research and speak out about it. Maybe there needs to be a smiling and optimistic face for MS. Maybe there are ideas or medications yet to be discovered that I need to be able to help promote or prove they work. I don’t know. I do know I haven’t done anything bad for this to be a punishment, so it MUST be an opportunity.
In the next couple months I’ll meet with my MS specialist again to start the medication trials to find one that will do more good than side effects for me. I’ll also meet with a physical therapist in Cleveland who will set up a PT program that I can do in Toledo. I’m going to get my arms in better shape and get the upper body workout of “walking” in the park again. I need to find a park with good paved walking paths that I can use my wheelchair on. I’ll get back into school in the fall semester and I figure during that semester, I’ll start working on updating my resume. I’m going to take this opportunity to, really knowing my weaknesses now, really discover my strengths and make me the best me I’ve ever been.
I don’t want pity, just a little positive reinforcement here and there. I want to enjoy every day for the treasure it truly is, like I always have. If someone looks at me and feels better about their situation because, “at least I don’t have HER problems,” that’s okay. It’s good. It’s certainly better than ignoring me! I want to continue to be a happy optimist and be an inspiration in whatever way I can.
Feel free to ask any questions you have in comments or email to chronicleofnani@gmail.com.
To bring the rest of the regulars at my cyber coffee shop up to date, I have my official diagnosis from Cleveland Clinic. I have MS, PPMS to be exact. That’s Primary Progressive Multiple Sclerosis. The disease is not fatal, I repeat, NOT FATAL. It is, however, incurable, at least right now.
MS is a disease of the central nervous system that claims about 400,000 people in the US in its ranks, roughly 1%. Boy the percentages always get me. I’m never in the middle. I’m 100% looking at the best side of things, 100% loyal to my friends and about 98% optimistic, which makes me about 2% cynical. I’m also, as a Mensan, 2% smart and now I’m 1% sick. Actually it’s smaller than that. The primary progressive form of MS applies to about 1 in 10 people with MS. So I’m not alone, but still relatively unique!
Don’t think I’m taking this all lightly, or it hasn’t hit me yet. It’s a life-long but not life-shortening disease. I have a choice. I can be devastated and depressed and waste myself into dark brooding or I can face it, make adjustments and move on without losing any my joy for living, since I still have a lot of life left. Which do you think sounds like a choice I’d make? It was an easy choice for me. I don’t do dark and gloomy well.
So, why me?
Why anyone? If it were truly up to me, no one would ever get an incurable disease. But they do happen to people and this one happened to me. My attitude makes the doctors and nurses smile. That makes me feel good. Maybe there has to be a certain number of people who have a positive attitude to encourage the medical professionals and inspire others that are inflicted. Maybe that’s why me.
I can be outspoken and I’m a decent writer. Maybe I needed to “have” something to do the research and speak out about it. Maybe there needs to be a smiling and optimistic face for MS. Maybe there are ideas or medications yet to be discovered that I need to be able to help promote or prove they work. I don’t know. I do know I haven’t done anything bad for this to be a punishment, so it MUST be an opportunity.
In the next couple months I’ll meet with my MS specialist again to start the medication trials to find one that will do more good than side effects for me. I’ll also meet with a physical therapist in Cleveland who will set up a PT program that I can do in Toledo. I’m going to get my arms in better shape and get the upper body workout of “walking” in the park again. I need to find a park with good paved walking paths that I can use my wheelchair on. I’ll get back into school in the fall semester and I figure during that semester, I’ll start working on updating my resume. I’m going to take this opportunity to, really knowing my weaknesses now, really discover my strengths and make me the best me I’ve ever been.
I don’t want pity, just a little positive reinforcement here and there. I want to enjoy every day for the treasure it truly is, like I always have. If someone looks at me and feels better about their situation because, “at least I don’t have HER problems,” that’s okay. It’s good. It’s certainly better than ignoring me! I want to continue to be a happy optimist and be an inspiration in whatever way I can.
Feel free to ask any questions you have in comments or email to chronicleofnani@gmail.com.
1 comment:
Nani, I did not respond yet to your email because I just don't know what to say except that I'm sorry and if I can do anything to help you, I'm here.
Your attitude reminds me so much of my beloved Moo. When he got his diagnosis, he vowed not to let the disease get to him. As it progressed, he kept right on going. My energizer bunny!! He chose not to take the chemo and radiation treatments, but did what he could to make it easier for other folks to deal with their treatments. He also kept the candy bowl at the doctor's office filled with goodies.
I like your positive attitude Nani. It's the best way to treat any situation. Nani, anytime you need a hug or a bit of encouragement, just give me a jingle and it's yours. You have a great day. Hugs, Edna B.
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