Remicade Hope

Hope for Remicade

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A mother with 2 teenage children had been in so much pain from RA that for years she had basically been homebound, dreading any activity that forced her from her home and into more pain. One Saturday, she said to her teenage daughter, "Hey , lets go hang out at the mall". WOW. She couldn't believe the words had come from her mouth. Her daughter stared, dumbfounded.... then grabbed the car keys. This mother had been on Remicade for some period of time and this was a breakthrough moment for her. Suddenly, without warning, she wanted to do something "normal" wtih her daughter. It was the beginning of remission for her.

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Another woman was downstairs in her home and needed something from upstairs. She ran up the stairs, grabbed the item, and ran back down. Then she stopped. How many years had it been since she had done that? Several. Something good was happinening to her body. She also had been on Remicade for a period of time. This was a turning point in her disease process.

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I am basically homebound. I cannot drive more than 1 mile, and then only at certain times of the day because the heavy doeses of pain meds make me a danger to myself and others. Every week, there are more days in bed than out of bed. Even on 60 mg Oxycontin plus breakthrough pain pills, I am in significant pain ALL THE TIME. I have great difficulty breathing and need my oxygen more and more. I can't remember the last time I ran up and down the stairs - but I do remember doing it without a giving it a second thought.

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Today was my 3rd Remicade treatment. I am up to 400 mg per treatment, and my next treatment is 8 weeks from now. If these other women can receive healing then so can I. It will be great day when I say "Amanda, lets go hang out at the mall", or "Michael, let's spend the weekend in the mountains", or "Will, lets go see a movie". Or maybe it will be "Yes, sign me up for that show - I can't wait to go!".

New Treatment Starts TODAY

Today is the beginning of something new.

Today I start on Remicade. There are brand new studies that show it works on Sarcoid AND RA patients. Since those are my two demons, it sounds like a perfect match. I am HOPEFUL. It's kinda funny, Michael came to me with info on Remicade at least 6 months ago and urged me to look into it. At that time, there were no studies out on Remicade for Sarc, plus my Dr. was concerned about infection, so we didn't try it. But now I've survived a round of Embril, which didn't help my disease, but at least didn't make me sicker. So my Dr. feels more comfortable putting me on Remicade. So we start TODAY. The insurance company is covering it, so all I have to pay is $30 per visit. The way it works is I go to a clinic and they run an IV for 3 hours. That's kind of a bummer, but once it gets "going", I'll only have to go to the clinic once every 8 weeks for an infusion. The other good thing is the clinic is at St. Josephs, so we don't have to go downtown every time. Maybe in a few months I can even drive myself there and back!

It feels good to have hope.

And it's bright and sunny outside.

Confusing

Very Confusing

I've started the slow slipping down off Prednisone again. There must have been some people praying for me because we all made it through this round pretty well. But the taper down, now thats tricky. Everything is surreal and I fade in and out of life. So much of the time not feeling anything except the pain increasing as the pred decreases. Your voice bounces around in my head mixing up the words in a jumble until what I hear is not what you said. The other voices are there too, calling me, always calling me. The tradeoff is in full swing now. I don't have enough pain meds. The pharmacist treats me like a drug addict. I sit in silence. Is there anger in there? Will it come out some day? What did I just say? Was that me or you? Where is home base and can I ever get there again? Ah, HOME. what a word. what a place. what a feeling that must be, to be HOME.