It has been a crazy busy week, it’s not over yet and I’m exhausted. It seems everything in life is all or nothing. Right now I’m in all.
So Hubby and I made the long trip to the Rheumie appointment on Monday. Thankfully the weather was favorable for the drive. The appointment ended up being 2.5 hours long with a half hour wait to see her. I had to see the biologic nurse and that took some time.
Long story short, the Dr. is calling what I have sero negative rheumatoid arthritis for insurance purposes. She still won’t call it that for me. I’m so confused. Last time I saw her she called it mixed connective tissue disease not yet determined. (You read that right). This time it’s sero negative rheumatoid arthritis, with mild lupus symptoms. I swear I get a different diagnosis or half diagnosis every time I see a specialist.
Anyway the Rheumie is going to bat for me to get on Enbrel. It’s a biologic shot I would give myself once a week. That will help control swelling, pain and progression of the disease. It’s no easy process to get on since it costs $1800/month. Insane. I. Know. I have to of exhausted all other medication options before I have a chance of qualifying for this med. I’m almost there.
There is apparently one other med I have not yet tried but the doc is going to fight the Insurance company for me on it because it’s known to do the same thing all the other meds have done to me. I didn’t know this but I’ve lost 10 pounds because of how sick these meds have made me. The doc says I’m borderline underweight. I was very surprised since I thought I was packing on weight. Like I said the meds have done a number on me, maybe causing more serious issues. Doc wants me to have a colonoscopy. My nightmare.
When I went for all the testing prior to this appointment, part of that was hand x-rays. The tech asked me why I’m getting hand x-rays again when I just had them two months ago. She said there would be no change in two months. Guess what? There was change. That’s scary and shows despite the meds I was on, how fast the disease is progressing.
So jumping through hoops to get mostly full coverage for Enbrel has begun. Good times. If the Ins. company insists I try this other med first I don’t know what I’m going to do. I can’t continue to be sick like I have been. I asked the Dr. how long I’d have to give it. She said three months. If it does the same thing to me, I won’t last that long. It could land me in hospital. So, I’m grateful the Dr. is arguing it for me. Hopefully she wins.
It was a very long day with 10 hours of driving, a dog sitter who bailed on us and we only found out 3/4’s of the way out of town, a 3 hour Dr.’s appointment and a whole lot of information to take in, forms to fill out…But,
I had the nice side of the Dr. The biologic nurse is great. Our neighbour stepped in and looked after our dog for us. And I’m finally on the road to getting on a medication that should help and not make me so sick. Oh and the Dr. told me my kidneys are good even off the meds! That’s the best news because they were iffy before. Can I get a whoop?!
Good News & Tired Blogger,