A look into the past...

Greetings.

This website is a new one because, at present, my feelings about my life as a person with a disability are spread across a number of message boards (see the links on the right) and I needed one central location to keep my thoughts.  And here it is!

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I look like a fairly typical individual.  Female, on the tallish side, curly brown hair, hazel eyes…    Get to know me and you’ll find out that my mind is my best feature.  Not to brag (much), but I’m intelligent, witty, and creative.  I’m married to a wonderful man.  I love to sing, read, and daydream.

And I have an invisible physical disability.  The invisible part means that you can’t see it.  Maybe you can see my cane or crutches, but I have no broken limbs, no bandaged wounds.  The physical disability part means that I am in pain, somewhere, almost all the time.

It started back in high school.  I was fifteen years old and had recently gone through a massive growth spurt which changed me from looking like an eleven year old into a curvy young woman.  That growth spurt wreaked havoc on my knees, which didn’t know what to do about getting tall so fast and suddenly having hips.  The doctors diagnosed it as patellofemoral syndrome, gave me knee braces, and sent me to physical therapy.  Now, most people who get patellofemoral syndrome “grow out of it” so to speak and never have problems with it again.  In this instance, I do not like being the exception to the rule.  My knee pain is still present and bothersome.

Then I graduated from high school and started college, and hip pain became my new companion.  I blamed the hip pain on the way I walked, etc., trying to be nice to my knees.  It wasn’t fun, but I dealt with and never went to the doctor about it.

In July of 2008 (about a year ago from this posting), I started having hand pain and back pain in addition to the knee and hip pain.  I would wake up every morning very stiff, and then couldn’t do things I used to because of the pain: Make a peanut butter and jelly sandwich.  Go grocery shopping.  Play the piano.  Vacuum.  Write.  and many, many more.

I went to my GP and was put through a whole set of tests with poking and bending and blood work and was told that I didn’t have rheumatoid arthritis, and I didn’t have lupus, and I wasn’t anemic, etc., etc., and they suspected that I had fibromyalgia and sent me to a rheumatologist.

Well, dozens of x-rays, many vials of blood, and two hours in an MRI machine later, the rheumatologist suspects that I have general hypermobility syndrome that causes tendonitis in my joints, degenerative disc disease/arthritis in the lumbar region of my spine, and fibromyalgia.  (I’m not completely convinced about these diagnoses… but that’s another post and shall be written another time.)

I have now tried the following pain killers: Vicodin.  Massive doses of Advil.  Mobic.  Ultram/Tramadol.  Lidocaine.  Other NSAIDs.

Plus muscle relaxers, antibiotics, sleeping pills, and Cymbalta.

Tramadol takes the edge off the pain.  Sometimes.  But it’s really not working as well as I want it to.

Cymbalta has just been a mess of side effects.  Weight loss.  Insomnia.

I’m tired of being in pain.  I use crutches most days to get around.  I feel unsteady on my feet.  I have massive spasms in my back that feel like lightning traveling on my spine.  Other muscles spasm randomly.  Or twitch.  I have stiffness in all my joints, and pain in my hips, knees, hands, and back, and occasionally other joints.  I’m not sure I want to know what the medications I’m on are doing to my body.  I’m tired, but the insomnia keeps me from falling asleep and sleeping well.  I’m having to adapt my whole life, including how I do grocery shopping, the way I take classes at school, how I sleep,… all of it.

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Well, now you have heard the very condensed version of my life… or at least the past year.  If I haven’t bored you to tears already, I invite you to join me on my journey as I seek to discover who I am now and how to live the life of a person with a disability.

(Originally published on another of my blogs: http://ruminarispoonie.wordpress.com)