Update at the Bottom-Babies and Bone Scans

My undiagnosed autistic four year old (undiagnosed because I don’t see a need for it) is scared of babies.

They mention that autistics have big fears, phobias. This has been her phobia since last year when she was terrified by a yawning baby at church. Well, first, she didn’t want to see the baby. The best time, the baby yawned and that was that. She didn’t want to ever go back to church. Today, even seeing a PHOTOGRAPH of herself and her twin as babies was enough to cause utter mayhem. She cried then screamed and threw her juice bottle when a baby’s cries entered the mix. I felt so sad!

So, the phobia isn’t just of babies in the flesh, it’s any babies. And not just yawning, anything they do. Sad to discover this.

I wish my children could enjoy the world around them. It reminds me of my poor boy when we went to the Ear Institute for his auditory processing problems. They had some chairs that were meant to be child-friendly, and had painted palm leaves on the floor. The chairs were shaped like upturned hands with the ‘fingers’ being the back of the chair where you’d rest and the palm being the seat.Both of these were traumatizing for my son. The very things designed to be fun, were anything but!

I join in with the adult autistics who disagree with those calling for autism to no longer be called Autism Spectrum Disorder because they hate the word “ disorder” as they feel perfectly fine with where they are on the spectrum. Nice for them, but for many of my children, autism and its comorbidities has brought disorder to their lives.

It has taken their peace, and as a sweet sister noted today, it has taken my peace as well.

Anyway! The good news is- I don’t know who is reading and only one has asked- is that the paronychia seems to be under control! The cream and soaks and elevation over the weekend seem to have reduced the swelling a bit and definitely reduced my perception of pain. I can’t say the pain is gone because my threshold is high. Maybe for normal people it would definitely still be hanging around. But for me, it’s ’gone!’ Without needing antibiotics.

As for my next AS treatment, I have no clue! The doctor said I can get a form for the disabled parking online and send it through. But no word on treating this awful scourge. I’m more and more tired each day. The other day I fell asleep during the day while reading to my four year old. Had not done that in ages! And my bones feel like they’re on edge. Close your eyes and feel every single bone in your body. Imagine how it would feel if your bones were rusty metal and not oiled at all. Imagine moving that piece of metal with its joints grinding on each other. That’s me.

Tomorrow, I go see a doctor about having a DEXA scan done- bone mineral density scan. My gynae suggested it because of menopause; and given osteoporosis is a big problem in AS patients, I have two reasons to have the scan done and confirm the calcium supplements I’ve taken for the past four years has helped strengthen my bones, same with the exercise I’ve done. Let’s hope for the best and let’s hope I like the doctor! My gynae sent me to another gynae at a hospital 20 minutes away instead of my going to him, 40 minutes away. And let’s hope I get my results! The silence from my current gynae is what tells me the growth wasn’t cancerous.🤷🏽‍♀️

ETA- Less than an hour after publishing this post, I opened my mail and saw a letter from the medical aid saying they’d partially fund the Cosentyx- till October this year. Needless to say, I was relieved but not much. Though I’m suffering, at least I’m not suffering and paying lots like I will have to now that they’ve agreed to pay their little sum. And I’ll be paying and waiting to see if the new treatment even works. And I don’t know how exactly we will pay given the teens will hopefully be in university next year. So yeah. It’s ok news but not amazing. I don’t know how long it will take to work- if it will at all, what the side effects will be and if they’ll be bearable, nor what happens after October. The Enbrel had been approved basically for as long as it would help me.