I went to YouTube to go find this song.
It’s my war cry for today. I’m figuratively on my knees- heart screaming and my invisible eyes weeping. “I CANNOT DO THIS!” In fact, yesterday morning, I mistakenly said it out loud, “I can’t!!” And my son, sweet Micaiah asked from another room, “You CAN’T!? What can’t you do?” Oops. I hadn’t realised I’d spoken out loud. So I explained that my fingers weren’t obeying me. I couldn’t open the blister packet and get his tablet out. At the same time, AS fatigue was so strong that I felt I had no energy anyway.
“I can’t!“
My shoulders are steadily getting worse. I handed Amarissa her tablets while I gently raised my arm, and we both heard my shoulder, “Crraaaccckk!” And it stopped moving. For a moment, my arm wouldn’t go higher.
“I can’t!”
Today, I had so much I wanted to do. But just bringing down and carrying bits of laundry (No lifting heavy things for two weeks after surgery) caused lots of uterine pain and I had to clamber into the bed-womb and bones all screaming,
“I can’t!”
There’s a spot on my shoulder where I rub, and I can feel the sore spot. It’s not in the joint. It’s not where the night pain is. It’s just purely along the bone. When I turn my back, I feel my neck creaking, getting ‘stuck.’ I walked into the pharmacy at 9am, hours after I woke up and yet my legs were still stiff. Not normal. I walked as if made of… I don’t know. Like a fictitious zombie would. I felt shy. I don’t want pity. I don’t want to be noticed. It’s as if my leg didn’t want to move. Didn’t want to obey me. It was telling me,
“I can’t!”
I can say for sure that my right SI joint didn’t benefit from the infiltration. They’re charging us R2500 for that!🫣 (Oh, I’m mentioning the prices because there are people I know who are saving up to do things privately but don’t have medical aid. I’ll be transparent.) I also owe for my blood test. My husband thinks I might even be worse. Yet another reason to never try again!
Speaking of blood test. My kidney function still says kidney disease stage 2. No improvement there. It actually decreased by 4 units. But my liver is still fine.
We have a slow burning panic going on. It’s not only me. My husband is also itching for me to restart trying to slow down this stupid. He was asking what the hold up is, asking if the they can’t just write the script and we see if the pharmacy would refuse to order it without medical aid approval. I had to go collect some of our chronic medication on Sunday so he drove me. My pain and sinusitis meds and my daughter’s ADHD meds, heart meds. Though I had picked the option to STOP the Enbrel, they’d ordered it anyway. He was tempted to pay for it so we are “at least trying something while waiting for the new medication.” But I still have three in the fridge. Surely medical aid will have agreed by then? Surely the panel will have sat by the time six weeks is passed, right. (If I need arm surgery, plan to give myself two weeks after the other op before going in again for the ulnar nerve op. And then after that op I need to wait two weeks before I can resume. Surely they’ll have approved and I’ll have ordered the new injections? If not, I WILL use the Enbrel in my fridge while waiting. This disease doesn’t wait. I saw yet another article about people dying because of crushed throats when the disease bends them over. I’ve seen people not even knowing this disease can do that- make you bend and unable to move your neck. Poor woman was asking in our web group why she’s leaning forward and unable to look up or to the side. 🥹”If it’s part of the disease “or something else as the forward weight makes her stumble and fall forwards sometimes. I wanted to wait till after the teens are done with exams then have my ulnar nerve surgery… But the numbness in my hand is too noticeable and the pain, I can’t ignore it. Like what AS does to bone, once your muscle is wasted and useless, that damage cannot be undone. And I am losing my grip strength. I’m also hoping that for the first time ever, I’m wrong. I would rather go tomorrow and be told I don’t need surgery. Because.. that nerve pain is horrendous. Awful. Unbearable. And it took a year for my skin to not be sensitive as much. How long this time, when the surgeon will have not only released it, but actually moved it to a different place completely, as had been the actual plan last time? It’s another slow/ burning anxiety deep inside. This one, not even my husband knows about. I checked out some soft round pillows with holes on which I can try rest my elbow at night. If the surgeon says I’m headed for another operation, I’m going straight to the aisle and buying it and hoping my elbow will be able to be positioned so it’s in the hole so nothing hurts me. I recall my sad updates to friends who used to ask about recovery. How helpless I was. How no painkiller touched the pain. How even my own pyjama sleeve hurt me when touching my skin, let alone pressure off my arm lying on my mattress, or a sheet on it when on my side… I am dreading it… I am hoping he will tell me it’s all good. I still have last week’s surgery gas pain to deal with. Another surgery..? 😏
“I can’t!”
I have parenchymal bands in my lungs, the lower lobes are collapsed and my lung function is decreasing. When you look up “parenchymal bands” you find one article that says it’s mostly in end stage lung disease and another article that says you might consider hospice at that point.
What?? No way! I still have much life in me. Even if it’s not a good life. Body wracked by pain. Nights..My neck and shoulder scream too. And so, in the absence of any kind of relief from the relentless suffering, I looked for “I Shall Not be Moved.” I don’t care what God allows, like a tree planted by the water, the tree in Psalm 1, I will remain grounded and rooted in Him. Though I really feel like He is slaying me, though I feel the AS moving through my body and I can’t do anything about it, I will trust in Him. And I will not die soon.
(My lung function is dipping below 94 at night. It is going to 92%. Normal is alive 95-100%. When it gets to 88, I’ll tell the pulmonologist. We will need oxygen at that point.)
Still…I’m “on my way to heaven. I shall not be moved.“
They said I should write a book 