Re: Re: Discribing RA

[Guest guest]

and group;

 

I save a few post for later use or memories.   This one really describes the

disabling story of RA.  I hope its OK for me to re-post.  I couldn't delete or

paste any of the other posts under it   I would erase the rest off but my PC

wont let me.  I think it's because it is a saved post. 

 

Is Shauna still in the group?  I really enjoyed this post.  And the letter that

was added.  Today with all our technology people still don't understand the

common day diseases,  myself included. 

 

thank you

clora

 

From: shauna4343 <shauna4343@...>

Subject: [ ] Re: Who's (who is) on what for pain

Date: Thursday, July 10, 2008, 4:00 PM

I was officially diagnosed at the age of 17, but the symptoms started

when I was nine.

Honestly, after a while you just get used to it. It's a

different " lifestyle " so to speak. And a very challenging one at that.

The best advice I can give anyone is:

1. Eventually the chronic pain will deplete the natural chemicals in

your brain and most will need an antidepressant. GO FOR IT!

2. Activity REST Activity REST Activity REST

Take naps or just lie down and rest every day and don't feel guilty

about it. YOU ARE ENTITLED.

3. Do what ever you need to do to live a semi-normal pain free life.

If marijuana works for you, go for it. The medical community is all

for it. It is only our congress (con being the opposite of Progress)

that opposes.

I think the following letter might help those whose families and

friends just don't understand.

Dear District Manager:

Thank you for taking the time to speak with me, I appreciate your extra

time and attention

But on a personal note I am compelled to share with you something that

has bothered me since I met you.

It is your statements that because you have a sister-in-law that has RA

you feel you are " intimate " with this disease. Furthermore, I find it

inappropriate for you to make a distinction between challenge and

disability in regard to RA.

I know you mean well, but believe me, when someone who does not have RA

says they have an intimate understanding of the disease because someone

they know has it, it comes across as presumptuous, even arrogant and

condescending.

Until someone has spent years trapped in a body that is hell bent on

destroying itself in the most painful and humiliating way possible, you

simply cannot understand. There is no intimacy.

You can empathize, you can sympathize, be supportive. Accommodate and

encourage but you will never know and understand with intimacy the

debilitating effects of this disease. The unimaginable pain, pain that

is so unbelievable as to be madness in and of itself.

You can't possibly understand what this disease and it's never ending

pain and destruction to one's body does to one's spirit. To be given a

pill at 17 years of age and told, oh by the way this will probably make

your hair fall out....To wake up some days in so much pain as to be

immobile. Unable to walk to the bathroom to relieve yourself.

To be told you can't have a child at this point in time because even if

a pregnancy were to come to full term the birth defects will be

devastating because the RA meds you are taking at that time are

mutagenic.

To watch your fingers hands and arms and wrists and knees and hips and

ankles and neck and feet and elbows and skin disintegrate, twist and

become deformed. To be unable to dress yourself, to feed yourself, to

be unable to attend to your own toilet. When the disease flares to a

point you can't stand on your own feet or hold anything in your own

hand because your fingers have swollen to the size of bratwursts and

are now immobile.

When you have had to undergo more than a dozen surgeries to repair

destroyed parts of your body. Then to add insult to injury, you are

covered with hideous scars and must endure return trips to hospital

because of life threatening DVTs that have formed following surgery.

To find yourself sitting on the kitchen floor crying with frustration

because you can't open a simple carton of milk or any number of

containers or bottles or jars or buttons or zippers or jewelry clasps.

Or to not be able to wear the heirloom rings passed down to you because

your fingers are swollen and twisted. Or not to be able to tear open a

simple paper sugar packet because the pain and swelling in your hands

just won't let you go there.

And that's just the physical aspects of the disease. Only those who

live the life understand the emotional devastation. The impact of the

moment when it really sinks in this is for EVER. There is no cure.

That this is your life, period. It won't get " better. " What you have

to look forward to is only more pain and destruction. This is the

aspect of the disease that leads to depression and feelings of

isolation and hopelessness.

Or the humiliation you experience when you see the look on a man's face

when he finally " sees " the disease and you know he won't be calling you

the next day.

Even if a miracle cure were devised today, the destruction has already

been rendered and the destruction is painful. Those of us whose bodies

have been relentlessly attacked would still need pain management

protocols and would still be disabled in many areas of our lives

because the damage has already been done and much of that damage cannot

be repaired no matter how many prosthetics technology comes up with.

Personally, I find it inappropriate for you to make a distinction

between challenge and disability when you do not live the life. Yes, I

agree with you it is a challenge.

But when you can no longer: run, climb, ride a horse, ride a roller

coaster, ski, roller-skate, jog, play basketball, volleyball, tennis,

racquetball, baseball, softball, field hockey, sky dive, spillunk,

repel, ride a bicycle, bowl, do weight training or gymnastics or yoga

or martial arts or any sort of self defense, kayak, canoe, backpack,

embroider, quilt, take a bath in a bathtub without someone helping you

in and out of the tub or to safely stand in the shower or even

sleep....and on and on and on....

My stars, even I don't fully " know " or am fully " intimate " with the

limitations, challenges and disabilities of this disease..... the point

I'm trying to make here, is if one is unable to participate in any

physical endeavor they choose because they are not physically able that

is disability.

When participation is not an option, it is a disability. When you send

out your resume, get immediate calls for interviews and then you see

the subtle look on the face of the interviewer when they see your

deformed fingers and hands and suddenly the in depth interview comes to

a screeching halt and of course you NEVER get a call back...thus

denying you employment.. ..that is not a challenge... that is a

disability.

When one cannot work a full time job that is a challenge. When one

cannot work a full time job that would provide them with the economic

and medical benefits that they need that is a disability.

Because I can't work a full time job I would be economically

discriminated against as a part time worker in terms of financial

compensation, i.e., pay rate and health benefits.

I find it appalling that those who need health benefits the most are

the ones that are denied it most often. And now that Congress and the

health insurance lobbyists have stepped in, people like me who need

their meds the most can no longer afford them because the big gun RA

meds are Tier 4 meds (catastrophic coverage).

What is that doing to my body? Nothing compared to the emotional

stress that it is inflicting. The emotional stress of trying to find a

philanthropic organization that will help me with the cost of the

medicine I need.

The emotional stress of filling out the endless, bureaucratic red tape

in triplicate must be notarized then delivered to the rheumatologist

who then must dictate the required letters and then sign and fax the

paperwork that the philanthropic organizations need.

The stress of waiting and waiting and waiting for help with the cost of

the medicine I need and praying I don't have a break through flare in

the interim. And those that do know and, are intimate with RA know

that emotional stress is one of the most surefire and destructive

triggers of a break through flare.

I could go on and on with the intimate facts of this disease. Watching

my skin turn to crepe paper. Knowing the disease is systemic and is

destroying my heart and lungs and cardiovascular system as well as my

bones and sinew.

Knowing that the very meds that keep the disease in check are

destroying my liver. And knowing that if my liver were to fail I would

not be a candidate for a transplant b/c of the preexistence of the RA

and the required meds that destroyed the first liver....Catch 22.

Knowing I'm not going to live to be an old lady. That is something I

have come to terms with and I'm okay with. But what I haven't come to

terms with is the look on my daughter's face when she realized I wasn't

going to live to be an " old lady. " That is the most devastating

intimacy of all.

I know you mean well, and I appreciate your attempts at empathy, but

until you live the life you can never know the many intimate

devastation's of it. So please, don't say to me that because you know

someone who has RA you are intimate with it, that you " know " ... " Believe

me, my sister-in-law has it and I am intimate with it, I know..... "

because, honestly, with all due respect, you don't.

Thanks for letting me share this with you.

Shauna

>

> > i wanted to find out if anybody else uses marijuana for pain or

> > nausea. i take percocet, ultram ,lyrica, tramadol, baclofen,

> > ambien,and lortabs occasionally. i am on sulfazine and methotrexate,

> > and prilosec to try and protect my stomach somewhat. i have had

these

> > diseases for two plus years now and 45 years sounds crazy to me. how

> > old were you when you were diagnosed?-- - In RA-