I didn't post yesterday because I was going through a lot of mental turmoil over the chat with my Dr's assistant. So here we go on that now that I have had time to digest and mellow a bit.
The Dr cut me off. Yep, the Humira ride is at an end. He wants to put me on something called Simponi. I hadn't heard about it till a few months ago when he tried to get me on it and my insurance said "Not gonna happen". I'm not holding my breath that Blue Cross will change their opinion any time soon. So back to square one. UGH!
I had a feeling this was going to happen, but I hoped in some part of me that he'd let me keep going. I also know that what was going on in my body wasn't a good sign. It's really hard to have that glimmer of hope, even a minute one like the miraculously psoriasis free toe, and have it taken away. It's similar to finding your dream job. It's everything you've ever wanted to do in the field you actually love working in. You get the call to schedule the phone interview, breeze through it with flying colors. You get selected for a face to face interview. You are down to you and one other person. You pray, do some ritual dance, anything to give you some spiritual/cosmic edge. They fly you to the place you would be working for a last interview. More ritualistic gifts to God or whoever might be listening. Then at the end of it you don't get the job. TOTAL letdown! Yes you'll survive, but the build up of the possible was intoxicating and dreamlike.
I had several other feelings last night beyond the grief of the loss of the dream. Anger, worry, fear, irritation, and general pissed offedness. Looking in my fridge and seeing 2 sealed boxes of Humira also reminded me of the chunk of money not in my account anymore. OHHH more waves of fury! Anger at my body, anger at the system, anger that yet again I am let down by the wonders of science. Fear that without something to help me I am going to be unable to work sooner rather than later.
Now I've had a night to digest and cool off. I'm no worse off than I was a month ago. I'll deal with the grueling decline, and day to day surprise attacks my body springs on me. I'll keep looking forward and finding something, anything every day that is good in my life. There will always be something good to feel blessed about no matter how small it is. If all else fails I always keep a decent bottle of wine in my pantry.
Information on Simponi.