What should I take to the summit???? | Arthritis Information

 

Thanks to katie, I a am able to go to the summit. I didnt know if anyone wanted me to say somthing special? If you want me to say aomthing for you, just let me know, and i would be happy to!!!!Yes, please. Could you emphasize how hard it is first to work with this disease and second how impossible it is to get disability? Also, the lack of medical care and high cost of it are huge issues. Why isn't there some national campaign to say how damaging RA is? Why is the only message out there is how good the biologics are? We need the light shown on how devastating this disease is to us. Our illness is just as important as cancer or diabetes. If as the governments states that arthritis has the highest cost due to lost work/ disability/ medical then why is it not one of the forerunners for research money?I am in the UK but just that you deserve to be recognised and your needs need to be met. Good luck at the summit, I wish you all the best

In addition to focusing attention on these issues, and they certainly are important, how about putting together a "scrapbook" with some short testimonials from people who are suffering from RA...what they are feeling, the suffering and hardships they have endured, their frustrations.  Perhaps you would have an opportunity to give a copy to some of the government officials...help them put a human face on this disease.

For myself, I think the hardest thing for me to bear has been the cold, gnawing fear I sometimes feel, driven by the uncertainty of what the future will bring.  It really sucks the life out of me sometimes, and can lead to despair and depression. I shared the following poem before on this board.  If you decide to put together a scrapbook of RA experiences feel free to use it as my contribution.

Fear
By Alan Duncan

Fear crept in like a fog
That covered a sinking bog,
Sucking down into its deep pool
Any nearby wandering fool.

A cold damp sweats the air;
Icy fingers rip and tear,
Pulling down while reaching
To grasp white bones bleaching.

Images of black despair
Framed the walls of fear's lair,
A collage of dying dreams
Drowned by primal screams.

Is there nothing to bring peace,
Forcing fear to cease
Its foul quest to control
Each aimless drifting soul.

What purpose can we seek
To tame the clawing reek
That oozes from self pity,
An odor of fear for all to see.

The world's shiny machines
Cavort with grunts and gleams,
Sparking lights to scatter gloom
And scare away impending doom.

And yet their ceaseless toil,
As elements return to soil,
Halts amidst piles of rust
Seduced by time's lust.

Where then can hope be found;
From what source a joyful sound
To soothe fear's evil breath,
And scatter visions of death.

In each heart a spark of light,
Straining to burst bright,
Illuminating a passioned plea,
Seeking grace and empathy.

Follow the light to fear's demise;
Stare into it's hollow eyes,
And laugh at the empty gaze
As memory fades with the lifting haze.

Fear creeps out silently,
Transparent now, eyes see
Hope illuminated by love's light,
Heaven bourne by angel's flight.

Maybe searching this forum for some key terms, and looking over our posts, you can find something good to print and show them. Seeing is believing for some people. Thanks guys!

Congratulations on getting to go, I think it is a wonderful thing.  Knock their socks off!

Lori 

 

Hi everyone - I am in New Zealand & my heart breaks when I read what you have to go through. Our health system is a socialised one that unfortunately is heading towards the American system of insurance and privatisation. It is very hard here but not as difficult as what you people have to endure. Our government (a liberal left wing government) has stated that they are going to put all those on an invalid benefit into work - they have postponed this until next year but when challenged on how they are going to help those who are unable to work they just reply by saying they will help everyone into work. This ignorance of auto immune & other serious diseases seems to be worldwide.
I personally think a lot of the problem lies with the Arthritis Societies who seem to do little to promote awareness of rheumatoid arthritis & seem to think with medication & a positive attitude RA can be cured. The disease itself is such a battle and is only worsened by the fact no-one ever listens to us - this only contributes to stress along with the financial burdens,
the loss of relationships, friends & the bureaucratic nightmares
we all seem to go through.
I would like to see the Arthritis Societies more accountable - they are meant to be there for us & I know
in this country they seem to do very little for those actually afflicted with this disease.
I hope you can find a representative from this organisation who will be willing to put a case on behalf of all of you and something positive will come of this.
I read in a book a few years ago that rheumatoid arthritis causes more suffering than cancer and heart disease - at the time I had recently been diagnosed & thought this was an exageration but I now know it was not.
Our system is tough and is getting worse but in the USA
it is truly inhumane - my thoughts and best wishes are with you - at least it seems to be a start and this will
hopefully lead to a better understanding of this disease for all of us. Love to you all.

We need facts and figures. See my new posting, "Can you help me with this?"

Let's give her real ammo to go with.

Also, Alan and Katie, do you want to put together that book of poems? I know how to format something like that, but don't have the funds to publish it? But it could be set up as a 5 1/2" x 8 1/2" booklet that could be copied and stapled. Then it maybe it could be handed out since our collected poems speak to the pain of having this illness.

If someone can come up with a way to print them and Katie and Alan plus anyone else you wants to contribute is willing to do this, we could pull it off if someone can find a way to copy it.

I can send someone the final file, all ready to print on a regular copier and then they can be folded and saddle-stitched (with a staple in the middle). Later, we could try and get this printed through a real publisher.

If you haven't read these, you can go to: http://rasushi.jconserv.net/viewforum.php?f=41&sid=11b3f b0ccfda8c955cfd750432c097a4 for a look.

It would also be great if we could collect some of the postings from this site that speak the great struggle and pain that we have. This is a fairly anomonyous site. What would you think about that?

Print up the "This made me mad" thread that Hillhoney started, along with the article. That is something that needs to be pointed out. We do not have RA because we are fat. Nor because we already had OA. I'm glad that you are going, since you are young. They will be forced to see that RA does not affect old fat people. UGH. How about taking a poll? I'll start it, so you can get an idea of how many of us are under 50. It's so frustrating. GRRRRIf you guys want to email me the poems too, then i will print them out an take them with me. I haveonly found a couple, but i know there are alot more out there!Meg - Go to RA Sushi and look at the Novelists board, there's TONS..lol

List of things to take to summit:

undies, toothbrush, toothpaste, socks, meds....

Really, there is so much info on the message boards...and just speaking from the heart. I think the one thing that stands out in my mind is that there is lack of treatments and while we are waiting around for the research and the drugs that are gonna work...there is a total lack of public awareness about RA and how it differs from other forms of arthritis. There is no real advocacy out there for us. If we make up the largest group of disabled americans, then why is it so hard to us to get disability and other types of assistance?

add to your list a T-shirt that says "I'm not lazy I have RA...what's your excuse?"

omg there are some really good ones on there

Oh, I want one! Then, I'd like to wear it to where I used to work. They said all those things to me all the time. It's the one benefit to not working any more. I don't have to listen to crap any more.

Make me,

If you print up the thread "makes me mad", leave out my post about kicking the author in the ba**s, that might not leave a good impression of us RA'ers. 

I would still do it though, every day
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