Rare Diseases Suck

[jupiterjane]

In July of 2007 I was diagnosed with Parkinson's Disease. I was relieved because it explained a lot of the wierd symptoms I was having, unfortunatly it did not cover all my symptoms and 2 weeks after the Parkinson's dianosis I was told I also had a rare neuromuscular disease called Cramp Fasciculation Syndrome. The specialist was very excited and was constanly asking me questions about my symptoms and how I was feeling. Finding it hard to vocalize how I was truely feeling I wrote my experiece with this disease in a poem. This poem is 5 years old now but every word still strikes home.

RARE DISEASES SUCK

Curling under,

my toes

seperate in spasm,

my arches sore,

twitching,

calves throbbing

with each movement.

Muscles cramping

up

and

down

my legs,

circling my knees

and then

slamming

into my groin,

forcing me into

a stiff legged agony,

tears,

curses,

prayers.

Rolling out of bed

onto the floor,

unable to stand,

my body twisted,

my mind screaming

with terror!

I wait out the

uncontrolled dance

of nerve and tissue

until I can

once again

regain control.

Twisting to relieve

the pain,

my hip screams.

Rippling waves

of contractions

travel up my back,

squeezing

across my chest,

pinching my shoulders,

tightening my neck

into a corkscrew

about to pop,

my eyes twitching.

More tears,

more damn tears,

arms heavy.

stiff,

and sore.

My hands,

numb and tingling,

drop all that is

place within them.

Eventually,

the muscles ease.

I climb gingerly

back into bed,

lying still

sleep comes again.

Moving through

the day that follows,

feeling sore,

and tired,

the pain comes

in waves,

my limbs throbbing

as if they have been

deprived of the air

they need to breathe.

Rare Diseases Suck!

Jupiterjane

[WayneP]

Isn't it funny how doctors get excited when the rare cases walk in the door. I am diagnosed with Parkinsism with Gait Freezing but thinks I may have PSP. Every time I see my neuro he brings in some new doctor to show me off to and like "look what I got". So happy they get pleasure from my condition.

[Koko]

I was on a cruise ship awhile back and went to the infirmary for bronchitis. I told the SHip's doctor I had Parkinson's Disease. I thought he was going to jump out of his skin. He callled the nurse in to look at me. THey were so excited. Your poem tells it like it is. Thank you.

[Annie81963]

Great poem! I feel like you wrote it for me.It sums up how I feel most days.

[PatV]

My first neurologist was convinced I had Post Polio Syndrome! The second diagnosed PD and dragged a bunch of student doctors to look at me, told the same lame story to each bunch, holding onto my thigh and patting it like it was a prize poodle. So glad to find third neuro, a PD specialist and research doctor. Answer to my prayers!!!

[PatV in reply to PatV]

Regarding the CFS, some of those symptoms seem to be similar to my PD side effects. Does magnesium help?

[jupiterjane in reply to PatV]

yes some of the symptoms are the same as Parkinson's and for the first couplke of years I was constantly asking my specialist and neurologist which sympton belonges to which disease. Now I just don't care, pain is pain.

Magnesium does not help.

[blessed4431]

I understand how you feel I have PD and I have four children three of which have Muscular dystrophy. They have scapular perioneil MD. I love your poem

Have a Blessed Day

Joy

[PatV]

By sharing we will learn and help each other. Thanks!

[sandeelee]

I have seizures with my PD. After reading your poem, it sounded a lot like one of my seizure.