Okay onto different topics. I need a break from politics! :>)
I have written some posts recently about my experience with having Multiple Sclerosis. Hey...I think it is almost my one year anniversary of having my official diagnosis. Not something to celebrate certainly but I think I am deserving of a cake. Who can draw a brain lesion with decorator icing? If I didn't find some humor in all this I would surely crack.
One of the very frustrating things about having this disease is waiting for the damn doctor to be able to see me! I am sure this is not an uncommon experience for anyone dealing with any sort of medical issue but...the fact that neurologists are specialists...their time seems especially hard to get.
Here is a little song I wrote about waiting for an appointment with the neurologist. You can read my whole post about this topic here. Feel free to join the conversation and tell your own sordid stories of waiting for the doctor.
Losing my Myelin
(Sung to the tune of REM's
"Losing My Religion")
"My lesions are growing bigger!"
"They're bigger than you"
So won't you please help me.
The lengths that I will go
To get an appointment with my neurologist
Oh no I've said too much
I set it up
That's me in the waiting room
That's me pleading for an appointment
Losing my Myelin
Trying to keep up with you
And I don't know if I can do it
Oh no I've said too much
I haven't said enough
I thought that I heard you laughing
I thought that I heard you had an opening
I think I thought I saw you try
Every time the phone rings
Of every waking hour I'm
Waiting for that cancellation
Trying to keep an eye on you
Like a hurt lost and blinded fool
Oh no I've said too much
I set it up
Consider this
The slip that brought me
To my knees failed
I wasn't drunk
I'm having an MS exacerbation
Will someone please call me
With an appointment
I thought that I heard you laughing
I thought that I heard your nurse ring me
I think I thought I saw you try
But that was just a dream
That was just a dream
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Have you ever wondered what the day to day life is like for someone who has MS? Well if you already have this disease please join in telling people your story. Everyone who has Multiple Sclerosis is different in how their disease manifests and in how it affects their life. You can read about my unique experience dealing with the day to day challenges of having this disease here.
I will be back with more of this and that...you betcha by golly! *wink*
Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
18 comments:
My Ex has multiple sclerosis. It's been pretty insidious for her.
I have a co-worker with it and from time to time it leaves her a bit scattershot with her memory and an unsteady gait, which has been misinterpeted by the highers up as her being drunk all the time.
It's been an uphill battle for her ever since, especially when they've been trying their hardest to make her take a disability retirement, in order for her to go away.
It is bad when you feel the need to compose a song about the frustration and lack of interest you encountered; when something worrisome or terrifying was taking place within you. Beautiful composition, I'm sorry real life brought such words to you.
Two friends of mine have MS and each person has their own challenges.
I didn't realize it was only a year diagnosis for you.
Keep writing, keep smiling.
Ha! I love your song. We've had our share of specialists appointments with my son and managing medical care is so time consuming and frustrating. I love that you can laugh about it.
Thanks for stopping by my blog. It's nice to get a chance to (virtually) meet you.
That's a clever song. You have a sense of humor, you maverick you. Wink.
;->
you handle it well, hon... with humor!
have some more laffs: http://www.koppsbakery.com/malepage2.htm
Hi MerelyMe... It's been a while since I've popped in to read your blog, so I thought I'd at least comment to show that I'd been here and also say thanks for a couple of things...
Thanks for the laugh about the idea of a cake decorated with lesions! Cracked me up...
And thanks for your notes on taking oral prednisolone on the Health Central site -- just what I needed to be reminded of after a recent 3-day course of IV methylpred, where I'm being too hard on myself in expectation of bouncing back quickly... I needed to be reminded of the significance of the 'roids!
Keep up the good blogging... MS or non-MS focused as it may or may not be on any given day!
Cheerio, Miss Pincushion (www.betweencoffees.com/pincushiondiary)
Too funny.
REM is one of my all time favorite groups, and "Loosing My Religion" happens to be one of my all time 5 favorite musical pieces.
I love you humor, it made me smile and I think its a wonderful way to cope with this disease. It can be SO frustrating! I have had to wait THREE months to see a neurologist.
You SHOULD have a cake. To celebrate a year of strength, humor, courage and victory over M.S. :) And I take ANY excuse to have cake!
I was just reading your blog...Very intersting. I think I'll come back to see what you do next. Thanks for stoping by my blog.
Thanks for stopping by. You are a brave woman.
Love that song...and well, there is a little humor on what you did with the lyrics...though I share the frustration of waiting for your doctor!
I am lucky to find a very good neurologist whom I'd say I've developed friendship...
I do like the new look of the blog!
The Trailer Of Love
Hi Meander. It's been a while since I dropped in, but I have enjoyed catching up with your writing. I followed the link here to your account of dealing with MS and I must say I was incredibly moved. It's difficult to know exactly what to say and how to say it appropriately, but I have no difficulty with saying that you are brilliant.
I think you are a maverick.
LOL!!!! VERY GOOD! Next time sing it loud in the exam room while you wait! I LOVE IT!!
Aside from being very beautiful, you ae so gutsy, so bright and so creative. The song is a wonder and having spent years with somebody with MS I know exactly whereof you write. Glad you are my friend and glad I'm yours.
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