So this week brings another “new.” Another something I didn’t see coming. After a while, I guess those things don’t surprise me anymore, and yet, there always seems to be a surprise or two in it. This was the case yesterday.
At a recent followup with my Rheumatologist, the decision was made to begin Orencia infusions. My doctor had wanted me to consider this last December, but I couldn’t wrap my arms around trusting our pharmacy/insurance plan to work as advertised and didn’t want anyone to get stuck with a big ole’ bill for this treatment. Seriously – these things are expensive, y’all. Since “working as advertised” hadn’t happened with insurance since early 2017, I had no reason to think this step would be any different.
Another story for another day.
My doctor was adamant that we had to start some sort of treatment and discontinuing treatments due to insurance issues just couldn’t be the final word. He fights for me, and I’m so grateful for my team. The RA was okay, but the Sjogren’s was barking pretty loudly, so back on treatment we go. This time, to accommodate the insurance errors, infusions.
Yesterday was my first treatment. 11 am.
I woke up on time and my mind immediately started racing. Be sure to take your BP meds. Get the roast in the crockpot for Chris in case you don’t feel like cooking later. Wash your arms extra-good in the shower, they’ll stick you there. Be sure to take some stuff to read. Don’t forget to check your BP. Take a little extra BP medicine. Leave early enough to get some cheddar rounds with extra salt.
Though my goal had been an easy, quiet morning, my brain just wouldn’t settle down. The BP always misbehaves and tanks to miserably low numbers, so propping that little nuisance up was extremely important. If it falls and won’t come back up, it’s a trip to the ER and I was going to the infusion by myself, which would mean an ambulance ride if there was a problem… so being in front of the BP was critical.
'Critical importance' calls for cheddar rounds, y'all.
This is serious business! I left in plenty of time to get these delicious crunchy nuggets of salted gold at the local Pals drive-thru. My east TN peeps will appreciate the richness of this experience!
Seriously... we make our plans around what time Pal's stops serving cheddar rounds. Y'all - it's a thang. I'm not even kidding! Get'cha some.
The scenery driving in is so beautiful, I need this last few minutes of peace. Moments that settle me. Managing stress is important in controlling chronic illness, and East TN does not disappoint. The Sunday drives are so relaxing. I thank Jesus for an easy 20-minute drive in and I don’t miss the big-city days when it took an hour and a half to make that 20-min drive.
After parking the car and observing the beautiful mountains around me, I head on in, me and my Pal's tea 3/4 plain (unsweet), and give my name to the lady at the front desk. In just a few minutes, I’m back in the infusion clinic, in my own little pod with my own little TV and we’re looking for a vein. In the right hand it goes, which is the absolute worst spot for a right-handed piano player! But my nurse is nice, and really, after all these thousands of needle sticks over the last 8 years, anywhere is fine. It’s just another needle stick.
The BP is fine, a little site pain and the drip is slowed down as I settle in my chair. I’d brought my gratitude journal and a brand new Smokies magazine. My beloved Smoky Mountains. We’re annual members of the park, so we get their quarterly magazine and it’s one of my absolute favorite things to read. After a little over an hour, the infusion is done. Other than some nausea and a little “chest-y” kind of sensation (likely the pacemaker just doing its thing), we’re good to go and I head on out.
What took place next caught me off-guard. As I got in the car and had my worship music on, a sensation of “wow… it’s really come to this” came over me. I wasn’t prepared emotionally. I’ve moved from RA pills to injections, to hospitalizations, to infusions and have had my share of ER rides in the back of an ambulance. The progression and chronicity of this whole journey, and I'll admit, being absolutely worn out fighting with insurance for almost 2 years now... was just a bit overwhelming. It was so surreal. There's just no downtime from RA and Sjogren's. It's always on the radar. Always in the thought process. The decisions making. You're just exhausted from it. Weary. Before I knew it, a few tears fell down my face. The ladies in the car right beside me smiled and quickly looked away. These gotcha moments are hard. I sat there sorta stunned for about 15 minutes. The music kept playing.
Of course, the trip home included a detour through Chick-fil-A drive-thru, where I got a salad and a drink. Ate half the salad and drove on home with plenty of salt on board.
Salt. Oh my word. I get so.sick.of.salt.
Once home, I was greeted by my lil’ guy, Tucker – he missed me! He’s such a cutie. After loving on Tucker-man a little, it was a nice hot Epsom salt bath and then PJ’s and a good book. We chronies spend a lot of time in PJ’s, hugging a blanket, and reading a book, can I get an “Amen!” ??
The day finished uneventfully and I enjoyed a pretty decent night’s sleep. I love sleep.
This morning upon awakening, I noticed immediately a marked decrease in pain. I blinked a bit to make sure I wasn’t dreaming. Even turned and twisted to search for the familiar pain that’s there every morning. It just wasn’t today. My hand swelling was down some. I could get my wedding band on and off. The usual 30-40 minutes on a heated mattress cover weren't really needed today. Is this true ??? Excitedly, I called Chris to let him know that things were good. I'd have to be careful not to over-do and I haven't had to worry about that in over a year! As the day went on, the BP needed a little baby-sitting but we're used to that. Salt, salt, salt.... <bleh>
Thank you, Lord, for some energy. For a little less pain. For the ability to get out of bed without half an hour of heat so I can move my body. Thank you for letting me walk in and out of that infusion under my own power, I didn't even have to use my walking sticks or cane. I didn't need the handicapped parking spot yesterday. That would have all been okay, but thank you, Jesus, for the “yes” on my request for that. I’m extremely thankful for a little less pain and some e.n.e.r.g.y.!! – and so hopeful!
So, now we wait. Wait for the meds to take effect and see where we are a few months down the road. My next appointment is scheduled for early August, about 3 months out. In the meantime, we keep on keeping on. Love others and do good. Do all you can, as often as you can, every time you can, for as many people as you can. Live life wide open. You won't get this time back.
Thanks for reading and for the continued prayers. I really meant it when I said I love you guys.
Rock on, Rheumies... rock on!
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