It’s taking me a very long to write this update, which started two weeks ago, I have initiated my one hour publish rule. Apologies for messiness, but I have to be consistent with … me.
A follow-up with my Rheumatologist resulted in her halting the one month try of a weekly pain patch, Butrans. The increase in my already frequently present symptoms were misery-inducing, after it’d been on four or five days. I joked, with a nervous laugh, “Here we go!” as I pulled off the used one and put on a fresh one. By the time I put on the fourth, I wanted to cry as I put it on.
It was misery in a 1 x 1″ -ish square. The constant high pain migraine, constant nausea, sporadic and spectacular vomiting (no there are NO pix. *shiver*), dizziness (yes, I’m already dizzy a large portion of my day. this was “stay low to the ground” dizziness.), fatigue (I call it my lead blanket) and generally feeling constantly wasted. I burned myself more, cut myself more, have more bruises and fewer eyebrows left because of my slow reaction time (long story. derp!) I quit driving completely, which has put an even greater burden on my husband. (saving throw by Housie Jen, who let me accompany her on a double shopping trip!). I’m hoping that the next prescriptions lets that resume.
Now, these side effects are things I already was diagnosed with on the “Vestibular Migraines” list of symptoms almost four years ago. I think that’s what made it utterly debilitating. I would occasionally only get 4, maybe 5 hours a day where I was fully cognizant and able to interact my beyond our home, but I required at least one or two days for recovery.
The patch resulted in my being in a constant state of clumsy, bruised, confused, whiny, cranky and sometimes, downright evil. Eldest kindly me Snippy on a stressful day recently. (He was totally right, I really was. My mood was justified, especially with the amount of pain in play that day, but still I had to try and turn my mood around for him, Chooch and our niece. Definitely not their fault!) This was aggravated by my minimizing other medications that could have added to the relief for fear of becoming addicted or of overdosing because these are not the meds you want to mess up and take too often.
When we told her about the vomiting, my fave story being a vibrant purple splash of color (vanilla nutritional shake with blueberries blended in was SUPER purple!) that I left on the shoulder of I-95 south a week before, she laughed along with us, but remained concerned. I assumed she’d want me to tough it out longer to see if I acclimate to it. And while the mild base of constant pain relief was nice, Dr. says it’s not good enough to offset the symptoms on the lowest possible dosage. But pain relief is pain relief, so I briefly argued that maybe my body needed more time to adapt. In the end, I gotta say, I loved ripping that damned thing off. Didn’t even make it to the car! *ow*
I’ve taken a break off the Butrans before starting the next daily. I needed a damned break from that stuff, the pain increase has been powerful. I’m starting the new daily tomorrow. Bracing for side effects, but as ever, I’m hopeful for relief that I can do long-term. I’ve also gotten a specially mixed lotion (PBJ for good insurance, $900 for 3 month supply of lotion, zero after insurance!) and a regimen change for a regular pain-breaker.
The self-imposed driving ban is going to be extended for at least a week or two after the start of it. I hope to regain being able to drive again. I miss driving and LOATHE inconveniencing Chooch, who already works extremely hard with a 3+ hour near-daily commute. He wants to stay home more than I want to go out, most times, but we have mastered compromise on such things.
So, the process of finding meds that can bring normalcy to my life continues, after my 4th anniversary last fall. And both my Neurologist (neuro issue wrangler) and Rheumatologist (Fibromyalgia wrangler) indicated that there will not likely be anything that fixes me. As in, no cure likely, ever. Frustration? Infinite and immeasurable. Time and money lost (health costs + lost income)? Infinite and immeasurable when compounded by things we’ve NOT been able to do for our sons and loved ones. Gratitude for my problems not being terminal and only being pain? Also, infinite and immeasurable.
It’s at this point that I wonder if I can ever effectively thank the people that have intentionally, unintentionally or specifically shown kindnesses to me since this started. It’s pretty depressing to go back to Square One with every med and track the results. There’s no progress on my health improvement, but I just have too many amazing people that I want to share experiences with. Or watch them strive and obtain their goals or grow their families (preferably both). Or sit in a corner booth with someone and giggle over nothing worth mentioning and/or solve the world’s problems. And, guys, we’ve just hit the tip of the iceberg, there are so many games we have yet to play!
Whether I’ve known you 25 years (we gotta celebrate, Cindy!), 10 years ago, 6 years (Con Fam, you’ve never failed me!) or 2 weeks since we met. Just, ya know, thanks. Good people make the bad days bearable and the good days drip with gold and sparkle like diamonds.