I don’t know how soon, but soon, I’ll be getting my biologic! I have sent my prescription to the pharmacy via the app, and have applied for help with funding through an organization my rheumatologist’s office told me about.
I had actually seen the name in the Facebook group I left, but I figured that because my second rheumy didn’t tell me, it meant it wasn’t relevant to me! And so, I had to pay full price. This current rheumy’s nurse asked if I’d received help from the organization. Nope! So this time, I’ve filled in a form to apply for help. Now I wait.
I’m also a bit .. I don’t know. There are people who don’t get nuances well and they’ve discouraged me from being candid and open. Not their fault, but their reactions usually don’t match my reality. They’ll rejoice big time that I was approved. Meanwhile approval is just a step in a process of finding out if the biologic will make a difference. If is a very big word.
And if it does, it will only start making that difference around the 16 week mark. Four whole months of getting worse before hopefully stalling the process, or, slowing it down. And that was made extremely clear in a way it hadn’t been before. I have active Ankylosing spondylitis. I am not in remission. I’m not like some patients who are. My disease is moving, damaging, stealing my mobility, causing more pain. And the information sheet for the biologic I’m moving to, Cosentyx, states that after 16 weeks, 68% of patients on Cosentyx got at least a 20% reduction of pain levels and better mobility (ability to move.)
A mere twenty percent.
I hope I am not part of the missing 32% and I also hope I get much more than just 20% pain reduction. That would not be enough. I am struggling more and more each day. That reduction would take me to 2022 levels.
In 2022 I was begging to die. Didn’t know it could reach the levels I’m on. And I know now that it can get worse. I think of my Christian brother-in-law who had so much cancer pain that he was screaming if the sheet was creased. There’s fatigue and pain like this that stops me exercising, walking, driving, teaching. I try, but for the last two weeks, I’ve had little strength when moving for exercise! There’s pain. But there can also be pain that sees me uttering things I wouldn’t utter normally.
I have lost my optimism. I used to not want to just mask the pain by using pain killers as doctors suggested when we were trying to get this diagnosed. But now, three different pain meds give me no full relief. It doesn’t even become a dull ache that I can forget unless I start walking or when it’s night time and I’ve fallen asleep for a few hours. It’s always there. We’re at ‘pain killers don’t mask this at all!’ Instead of being woken by pain, pain is keeping me up. So much for trying to avoid pain meds! Now, you can’t give me too much!
You know, to not have anyone to talk through all this with is lonely. And so, I type. Maybe someone out there, no, I know someone out there is interested in my health and my limitations and joys. I shall type because I can’t speak. My children don’t get it, my husband doesn’t ask if the rheumatologist has written yet so he doesn’t know about the funding nor the Cosentyx prescription. Well, I haven’t told him about the latter because because I read that email at 11pm and he was fast asleep. Telling someone who isn’t invested isn’t the same as telling someone waiting along with you.
I am thankful for the small sisterhood that watches time speeding by and is sad that it goes by with no relief and only increasing suffering. I am sad for those like my migraine sister who are still waiting with no direction given. No lath set out yet.
Side note- I can’t find a pediatric OT even at least 20 minutes one way, away! What am I to do??? I guess I will have to muddle along. It’s better than not trying anything at all, right? I continue mingling OT resources with our normal school day.
My plate is heavy. It doesn’t even feel like a plate, it feels like multiple boulders being pushed down onto me.
I am weary.
I wish I was lying in that coffin instead of my father. But while I live, I’ll continue being the best mom I can be.
You know what? My talkative twin was singing in the bath today. I joined in. And her twin sister spoke-sang (chanted in time) along with us!! And before that, she had growled! She growled the exact phrase I’d said. A three word phrase!! First time immediacy echoing three words. She’d wanted to watch something on the iPad but my son wanted to make her watch a video I had put on. Hey, he wanted to stick to the rules. So I told him, “Ag, let her watch it!”
And in the bowels of the bedroom, behind the door, we heard, “Her watch it!” It was like a demon talking. I’ve heard demons talking (at church). It was hysterical. And cute. It made up for her pushing me out her room when I went to go sit with her. I always feel like I’m not doing enough. A friend sent some true story video where the mother basically isolated a little autistic boy, said words, repetitively, and then suddenly, he spoke. But that’s not what happens with all autistics. And so, I need to stop putting pressure on myself. He never wanted them out his space. He didnt react to them being with him, watching him, copying him.
She does. She reacts. And she don’t want me! Not at that moment. But there are other moments. Like later in the afternoon when I cut her nails and she opted to sit on my lap, and even before that when she’d asked for a kiss. She pulled me down, looked me in the eye and turned her head up a bit. It’s not like she puckers her lips. But we all know what that little upturned face means.
We will follow her lead. And I will let go of guilt. Comparison really is the thief of joy. And so, I’m grateful that nobody is sending me ‘success’ stories anymore. I am fine with her being fine the way she is. Besides communication, I want her to be content.
They said I should write a book 