One Big Blessing

WARNING: This post is VERY lengthy. Grab your tea and a comfy cushion.

With the above said, I'll just dive right in. I haven't posted since my last whine about my RD (rheumatologist) appointment in May and so much has happened since.

I saw my RD again on July 7, and we decided to give Orencia a try if I could somehow cover the outrageous cost. He told me he would use my symptoms, x-rays, joint count, and ADL score to convince my insurance company to cover the medication. I'm not sure how he did it, but they agreed to cover the drug and infusions after I meet my deductible. Since each infusion, even at the insurance company's discounted rate would be more than $600, I would have met my $2,500 deductible by September. But, since I have to have three infusions two weeks apart (and then monthly), that would be pretty much impossible to come up with. Bristol-Meyers Squib, the manufacturer of Orencia, is going to pay for the cost of the drug (not the cost of the infusion itself) minus $50 per infusion up to $5,000 per year. That leaves me to pay $264 per infusion until my deductible is met. That is difficult, but I'm doing it.

I had my first infusion on July 19. I was a little nervous about side effects because I simply don't have time to be down for even a day. I went to my doctor's office for my infusion. They put me in a great big comfy recliner, started an IV, infused the drug, gave me crackers and ginger ale, and took my vitals 3 times. The actual infusion took 30 minutes and I had to wait another 30 for my post-infusion vitals. I had no side effects whatsoever. How beautiful is that? The nurse called the next day, although I missed the call, to see how I was feeling. I was treated pretty good. I'm scheduled again for Aug. 2, Aug. 16 and Sept. 16. I'll also be seeing my RD again on the 16th, which is convenient.

I was told to expect the drug to take up to 8 months to work. Orencia is quite different from other RA biological drugs and is kind of a slow-poke. I read somewhere online that RA is like a running faucet. Other drugs dry up the puddle, but Orencia turns off the faucet. While other drugs control the symptoms (puddle) quicker, with Orencia, it can take time for the puddle to dry up. I'm willing to wait. I've been waiting for control of this disease for more than 5 years. I have a lot of hope and quite a bit of faith in my RD and in Orencia, so we'll see how it goes.

It's funny when you read the warnings for drugs and they make it sound like nobody should take them. If you've ever been pregnant, have hair on your head, like chocolate chip cookies, have more than 7 fingers, blah, blah, blah, you should not take (insert any drug name here). I guess it is good that I tend to ignore most of those warnings now. I've taken almost everything there is to take and I'm still breathing.

I had planned to have my thumb joint replacement this summer, while work is a little slower. And, I'd also planned to have the revision surgery on my elbow. But, my vice president at the university where I'm employed decided to send me to school 50 miles away, two days a week, for 11 weeks, to take a web design class. When I started my graphic design career, there were no computers. So, I guess I do need to learn this, and they are making an investment in me. I'm doing well and enjoying the class, but it has caused quite a few overtime hours to complete projects I would have had no problem completing during working hours. I do have my own .com address for my jewelry business (thanks to my son), so I'll be able to design and maintain my own site.

I'm so much of a perfectionist that I graduated from college with a 4.0 and am finding that I have not changed. I'm determined to get an "A" in this web class. When I attended college before, I did not have RA, and I had a much sharper mind. But, RA has taught me to be fierce, too keep pushing when all I want to do is lie down and just STOP.

My daughter moved back in and we've been rearranging the house again to give her some space of her own. I'm so glad to have my girl home with me again, though. She has been too far away for too long.

With all that is going on, I am very tired and in a continual flare. I'm eating narcotics like candy and putting on my fake smile. I'm getting through and getting by the best I can. Sometimes, I feel I'm walking right up to the edge of a cliff and looking down. One little misstep and I'll plunge into a rocky crevasse and that will be the end. I'll be putting on my brave face again in the morning and looking away from that cliff. I'm going to pretend it isn't there and try to enjoy the minutes, the hours, the days, even if they are filled with pain that doesn't stop and worries that would keep me from sleeping if I weren't so tired. I have a picture in my head. My RD is a knight riding his grand white steed, Orencia, and they are coming to save me. Beware RA dragon, beware.