Esther Tela Free speaks

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Quest for Enbrel

So there is a medicine out there, that for 10 years, have stopped the symptoms and permanent bone damage of people who have rheumatoid arthritis from suffering from their symptoms. Their hands stop becoming gnarled, they are able to go back to living a normal life without 15 pills a day. This same exact medicine has been approved by the FDA for my disease; Ankylosing Spondylitis. For the past 5 years. People with A.S. have been taking Enbrel and its been able to stop their symptoms as well. The bones aren’t calcifying. The joints aren’t falling apart (like my kneecap just did) and the 24/7 pain in the spine and the sacro-illiac joints are either already calcified so they don’t hurt, but this medicine can stop that calcification from happening. To be honest, I’m not all that eduacated on exactly what the Enbrel does for the A.S. but I can fix that in about an hour. All I know is that the medical studies that I have spent hours reading, say that ENbrel is one of the top medications to help stop the progression of my disease and help cut pain levels. The same things that my meds are supposed to do, well, my meds now don’t stop the progression of the disease, they only take care of the symptoms.

That’s why Trey’s Sand hits so close to home.

It’s hard not to get bitter and angry when Enbrel calls my home asking how my treatment is going. For some reason unknown to me, they think that I am taking the medicine. They don’t know that I can’t afford the 800 a month co pay. And since I have insurance, I dont qualify for any of the other prescription help programs that there are out there. Even Montel’s doesn’t do me any good. It’s hard to live with the knowledge that there is a medicine out there, that has an 80% chance, of putting me into remission, stopping the progression of my disease, and it would also give me back my health. My life before my flares started.

Tell me how you’d feel if you knew the medicine existed, have spent 4 years trying to get it, and the company still calls to ask how the treatment is going because they are so big they don’t realize that they ‘arent’ helping everyone get the medicine like their big huge advertisements on tv say. They don’t help everyone. I’ve literally slipped through the cracks and thanks to PHC I work 32 hours a week, when I am healthy enough, and they don’t fire me when I’m sick and need to stay home.

It’s hard not to be bitter, but of course check out what was in my email today:

The nature of bitterness is rooted in the fact that the pain we feel provides us with a rationale. We may feel that we deserve to embrace our bitterness to its full extent. And to be bitter is, in essence, to cut ourselves off from all that is positive, hardening our hearts and vowing never to let go of our hurt. But just as bitter feelings can be self-defeating, so too can the release of bitterness be life-affirming in a way that few other emotional experiences are. When we decide that we no longer want to be bitter, we are reborn into a world filled with delight and fulfillment unlike any we knew while in the clutches of bitterness. The veil it cast over our lives is lifted, letting light and warmth touch our souls.

I’m gonna be a little bitter today..but later on today..im gonna feel a whole heck of a lot better..

and if you know anyone who can get me help with a copay for the medicine Enbrel, give me an email or a message through here…it would change my life forever..

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March 14, 2007 - Posted by | ankylosing spondylitis, enbrel, FDA, reality

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