Someone on my sarc support group posted these and they sum up the nasty disease pretty well. It took me nearly 4 years to get the proper diagnosis and when I finally got the answer that I so longed for, I than found out there is no cure. Hay, that rhymed, maybe I should write a poem?!! :smirk: I think many of you will relate to the feelings written here.
Poetry - By Dale
"I have Sarcoidosis"
I have Sarcoidosis
the mystery disease
it's symptoms are no mystery
to get through them, no breeze
I have swollen glands, swollen feet,
swollen hands
every joint in my body aches
there's no cure, that's the breaks
I have a bad cough, nothing comes up it's dry
how'd I get this disease? no one knows why
I get short of breath
can't get enough rest
for I'm fatigued all the time
and sometimes do whine
The Prednisone made me really depressed
now I have to see a shrink and I'm very distressed
I got the ol' moon face and widow's hump
40 pound weight gain and the skin bumps
There is one more thing I'd like to say
A cure is what I ask from God each day when I pray.
My Life Turned Upside Down
I can feel it within - something is wrong
I am losing energy and not feeling as strong
Complex symptoms - of which there are many
Yes doctor, I too, wish there weren't any
I know there's a lot, but they are all true
Isn't there anything at all - you can do?
I know it's all happening, I sit there and plead
No matter what I said, I just couldn't succeed
Then into my search the right person came
A doctor who finally gave my ghost a name
The force of its strike can put you to bed
No physical boundaries excluded - not even the head.
It just sneaks right up - can make you feel like dirt
Creating problems to even button pants or a shirt
No Known Cause - Not Contagious - they can't figure it out
For Research - For Knowledge - use us we all shout !!!
I do at times sit - with my head in a wonder
What else in my life may I have to encumber?
My body - My life - are at times in a tizzy
This disease of many symptoms, the days that I feel like a sissy
They say there's no cure - so for now - that's the breaks
YES - I continue to fight - no matter what it takes!
It can happen to Anyone - so don't even feel smug
If you meet a person with Sarcoidosis - Please give them a HUG.
Dale C. Lucarelli
a woman of love and strength
and mother of three
WE and MR. "P"
We and Mr. Prednisone - we're holding hands
He's only in our lives - due to physical demands
This LOVE/HATE affair - it is like NO other
Reaching for that bottle - we say worse than - Oh Brother!
This hellacious disease goes on the attack
Then it's hit the ol' "P" drug - to give it a smack
Alternatives? there are few - times we have to surrender
Up the dose? Oh my! Lovely! Another Prednisone bender!!
The wishing to fight with just strong mental power
Our tears of defeat - wash away in the shower
Damn this disease - it doesn't follow any rules
Please convince us it's being studied in medical schools!
Disease symptoms - drug side effects - some choice!
Let the pharmaceutical companies give us a voice
We search to gain knowledge - with great frustration
If Mr. "P" - *?*?*? - allows us the concentration.
With vengeance - SARC patients - do fight back
Many trying several drugs - to cut us some slack
We put people in space - they can walk on the moon
Let us hope for the - ULTIMATE - Sarcoidosis drug soon!
Dale C. Lucarelli
Chippewa Falls, WI.
It is called Sarcoidosis.
Doctor, can you help?
There is a mystery disease; it's real and out there
With no clue regarding the why, how or where
Researchers seek answers, and then only find
Scant funding and attention, which tighten the bind
The symptoms play havoc with your life
Causing daily hardships and emotional strife
You make the doctor appointment, then there you are
Conveying symptoms that sound quite bizarre
Those with Sarcoidosis, unitively proclaim
That doctors treat or look at them like they are insane
Difficulty finding the good doctor-patient relationship
Just that look: Did you come by vehicle or by spaceship?
The disease is what's crazy, not those who are afflicted
Please listen to us; the symptoms can't all be predicted
You feel great frustration, you say, "Hey, I'm no nut!"
The appointment is over, out the door you do strut
People, in all areas of health care professions
Listen to your patients make their symptom confessions
You do not know them, as they know their own selves
Time out! High and mighty attitudes belong on the shelves
Doctors please, try to be more ... diplomatic
It's not our fault that Sarcoidosis is so symptomatic
Please play detective, you'll gain knowledge, too
Let's all work together, finding out what to do!
Sarcoidosis -- it's a multiple system disease
The symptoms are real, not just whims on a breeze
This disease is horrific! The treatments are few
We need our strength to fight the symptoms -- not fight with you, too.
Dale C. Lucarelli
Chippewa Falls, WI. USA
SarcoidWHAT?
You are like a butterfly
flittin' all around...
Then one day you awake
feeling knocked to the ground
You arrive for the doctor appointment
follow the medical routine
You explain so many symptoms
you just want to scream
Some patients get listened to
examined with great concern
Others get that disbelieving look
and do a slow burn...
There's some who get diagnosed right away
but then, for the majority of us all
The road to get answers
is a very long haul...
No matter the timing
when given the name to your ghost
Public and medical reaction is -- SarcoidWHAT ??
and your body -- the host ??
You feel like you've entered the Twilight Zone
Sarc demons invading -- behind you a locked gate
But please don't give up
though the frustration is great
With unity and strong voices
we continue to shout
"It is called SARCOIDOSIS"
and we will get awareness out!
Ms. Dale C. ( Thurlow) Lucarelli
Lehigh Acres, FL.
I have
I have...Sarcoidosis"
say.....whaaat?
So many I have contact with
Are afflicted with this disease
It is called. . ."Sarcoidosis"
"Say.....whaaat?? - if you please?"
"Sar-coy-doh-sis" we repeat - "Ask whatever you would like."
We strive to educate with words
This disease of multi-symptoms
Which to some ... may sound absurd
But hey! Vicious and unyielding - it can surely be!
No rules - No cure -- so, quite daunting
And where it may strike you next
Is a fear that can be haunting...
Any part of you - it can attack
From your toes -- up to your head
A persistent irritating cough - to serious neuro involvement
Knocking your butt - right into bed!
For some it's completely debilitating
And trust me. . .selective - it is not
Be you...black-white-yellow-orange
Or purple - with pink polka dots!
No matter... in the mild form-to severely chronic
Sarcoidosis challenges your daily living
The damage being done to your body
May be permanent and unforgiving
For the lives that are touched by this disease
Be it yourself - a loved one- or a friend
Please spread the word with hope and prayer
That medical research will find an end
Ms. Dale C Thurlow
Lehigh Acres, FL USA
Living With Chronic Illness
* Ms. Dale C. Thurlow
CHRONIC ILLNESS - it can rip right into the "core of your being."
It can be over whelming and your worst enemy.
Unfortunately - statistics show the numbers are high - in the devastation
done to lives - from the interruption of chronic illness.
Be it a spouse, a lover, family, friends, and/or your own self worth - it
can all be altered drastically.
Like the dropping of a bomb - into your life - when all was normal one day -
and then destruction happened. You had no warning......no clue......
no time for preparation......no power to control its wrath and evil.
The war taking place within your body. This battle waged against you -
by the invasion of chronic disease and the drugs used to combat it.
It is happening - your life changing before your very eyes - the stress
of living with something so " alien."
You want to scream...."What is happening to me?"
But wait........no matter what has happened - you are still - YOU inside.
Your spirit and your soul is your strength - and you can still fight and you
can still win - because your attitude is stronger than any illness - any sharp
words - or the loss of what you once thought was concrete love.
You cannot control the behavior of others - but you can still go forth
radiating
all the goodness you have within your own heart.
Of course...we all have times of feeling sadness.
You miss "that person" you used to be.
And now...these foreign feelings are happening to you.
You may be feeling - upset - out of control - un-worthy - inadequate
- LOST - and your brain is screaming. "I am sick of being sick !
With chronic illness - there is NO consistency - of how you can feel.
It can change so rapidly in minutes - hours - or on a day to day basis.
The difficulty you begin to think - YOU cause to people - because you are
sick.
The stress it puts in the relationships - with a spouse - a child - a friend,
etc.
"Well - yesterday you were feeling ok!" "And now today - when I need you
or we have plans - you say...you can't!"
Like...you are doing this by choice?
Chronic illness does change your life - in many ways.
Some of you may have a spouse - a special someone - the devotion
of your family - the friendships built of strength.
And some of you...may feel very very alone.....
But no matter your situation - please... love yourself - be good to yourself
-
and live each day for the gift it is.
Hi Michele, I understand fully the frustration, hope, and longing I read in each of those poems. In many ways I'm lucky to have had remission early in the disease process. Take care and keep us posted on how you're doing. Lindy
good poems...michleb...
R.A R.A it really makes my day
i love the pain as it never goes away
it gets really good as the as the erosions start
R.A R.A Please dont go it would break my heart
i love taking my toxic meds
even better lots of preds
so i would like to say thank you very much R.A
For eroding my ...skeleton all away....
where would i ever be whith out you i love you R.A
Thanks LinB-I read everyday but don't post too much. The remicade is helping for the first 1-2 weeks right after the infusion but than WHAM, I am down for the count. My next infusion is next week Thursday and I don't know how I am going to make it that long. I am loaded up on vicodin and steroid eye drops as my uneitis is flarring something terrible again. I am actually waiting for my doc to call me to see if I should just do another week of steroids to get me by or if its time to say uncle and add in either arava or cellcept to the mix.
Its such a roller coaster to fell almost human, to have the pain go from a screaming 7-8 down to a dull 3-4, to be able to pick up the house or run whatever errand than all the sudden, its back with a vengeance. Its cruel really. I am glad for the little relief I get but man, the ups and downs really get the ole depression going.
I was reading something put out by the Cleveland clinic yesterday that said that only 1-4% of sarcoid sufferers get the chronic arthritis like swelling and pain that I have and that we are in the least likely group to respond to treatment. Not real encouraging! Also 25% of sarc patients have chronic uveitis like me and of those 10% go blind from it. I think I need to stop reading, its too depressing! The sarc is also affecting my heart and medication is not controlling my heart beat so they have talked about implanting a defibrillator in my heart to shock the rhythm back into the proper beating when needed. Sounds like oh so much fun!
sorry dont know much about
sarcoidosis only what i see here..
there looks a lot going on. i hope you find the right med combination
and hope you can avoid surgery...
Boney
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