If you have kept up with this blog, you’ve guessed by now that things have been pretty difficult lately. Flaring with pain, fatigue, swelling and just overall blah has taken it’s toll on me. I admit I got pretty down about everything. The worst part is all the stress I am feeling trying to get everything done for my job, my home, my family, my pets. I’m so stressed from pain and exhaustion that I messed up my dog’s eye medicine (she is more of a #spoonie than I am) and she ended up in the ER in terrible pain from an ulcer in her eye. I failed at managing both her symptoms and mine. I was heart broken and felt so guilty. I added to her pain because I was not able to manage my own. I did this in addition to NOT doing the laundry for 2 weeks, NOT cleaning the bathroom, and ONLY using paper plates and plastic utensils so I didn’t have to do dishes. I just can’t do it all anymore. Somedays, I can do very little.
Then a friend posted this meme on Facebook and I literally broke down.
Limits. Admitting that I am now limited. Wow. It hurts. I think some of it is I am getting older, but a big piece is that I physically can’t do certain things anymore. I let it hurt for about 3 days….then decided it was time to move on or try to at least. I had to remind myself of my saying, “Living with autoimmune arthritis is not the end of the world, it’s just another way of living in the world.” I can’t just preach it, I have to live it. Time to pick myself up and dust myself off and stop feeling sorry for myself (easier said than done, right?) I needed to look at the world again from a new perspective. I know how to do this, I know how to care for myself and my dog, but this painful flare wore me down. I needed a new plan to live well. I decided to try to manage what I could: going to bed on time, eating cleaner, going back to meditation and acupuncture. I can manage these things.
I also called my rheumatologist to get an appointment but was told I had to wait three weeks. My rheumy called me back later that evening and got me in to see her in a matter of days (the people you know, right?). She told me not to take my current biologic drug because she felt it has not been working for about 6 months and she wanted me to switch to another biologic drug. By day of my appointment, I could literally feel each bone in my hands because every one hurt so badly. I was exhausted, running a low grade fever, and so bloated from joint swelling and prednisone tapering that I felt like I could pop. My rheumy talked to me about all of my options. She had a drug in mind and felt it was really helping patients who had only brief success with other biologic drugs. I am now taking an interleukin-17A (IL-17A) inhibitor (2 injections- 1 in each leg once a week for 5 weeks, then once a month). This is a different kind of treatment for me. The potential side effects are still scary, but the thought of becoming unable to care for myself and those I love, is scarier. So I am on my 6th biologic, dealing with pre-authorizations and a new specialty pharmacy….and trying to remain optimistic. I still doubt that I will ever have a pain free existence, but I’m willing to take the risk to try. Heres hoping that the 6th time is the charm..
Oh…and my dog, Georgia is much better. Smiling during her Halloween costume contest (she won!!) and being the best snuggler in the world. Here she is as Audrey Hepburn in Breakfast at Tiffany’s OR Georgia Golightly in BARKfest at Tiffany’s 🙂
Hang in there friend!! I just started Actemera IL-6 infusions. I pray that your new med will do wonders! That you will look back on this time as a distant memory.
I hope you find relief as well! I loved Actemra, but ended up being allergic to it.
Your pup is beautiful. We have one at home who needs constant attention as well. Thankfully my wife tends to her (and me). I don’t know if Sheryl saw your pup we may have another one.
I am so sorry that you struggling my friend. But my number 6 has been a terrific replacement. I hope yours is even better than mine was.
Thanks Rick!! I appreciate it!