Friday, August 1, 2014

Benlysta Round Two

Went in for my second Benlysta IV treatment today. Was a day filled with waiting, getting sick, waiting, etc.

The nurse had to stick me three times to get a vein. After the first two, she swapped over to a new nurse who was able to do it first stick. My body reacted to it and I threw up for half an hour. 

Once I was settled down, they brought me something to drink and then I waited again. It was two hours before they received the IV from the upstairs pharmacy. Then one hour to administer.

It makes no sense to me. If you know I walked in the door, why didn't you order the medicine then? They have to mix it up, warm it up and then send it down. I was told it takes about fifteen minutes. 

Then why the long wait? I've learned to wait, but the friend who took me in couldn't understand why things were so slow. 

I said, "Welcome to the medical world!"

I then told her horror stories of my hospital and ER experiences. She decided if this was the worst that happened, it was nothing compared to other times. 

I agreed.

Once the IV was finally started, they brought us a box sandwich and cookies. Wasn't much, but I was thankful to have something in my tummy. 

Now we wait for the side effects. Last time it took two days to kick in. I hope this is what happens again. If I know it is coming, I can handle it better.

So two behind me and one more to go on August 15th. After that I go once a month until the funds run out. I've put a lot of hope into this medication and would like to continue it, but it all comes down to cost. 

My Go Fund Me site has a great start, but seems to have stalled. If you can possibly help, please visit and donate. $1, $5, $10 - it all adds up and goes to pay for the Benlysta. Wouldn't it be amazing if an anonymous donor appeared and fulfilled the rest of the cost! I believe in miracles!

Here's the link:

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