HELL and THANKFUL

I’m in hell. AS pain getting worse each day. I quit using my pillow earlier this week as my neck pain with it- as flat as it is- was too much. It was then that I bitterly remembered how the rheumatology was surprised that I “still” can move my neck. The bone scan did show arthritis there and in other areas as mentioned, but I had managed to forget it except for when I’m washing my hair.

But this week…Maybe it’s also the cold weather hitting us. I’m limping. My SI joints are aching deep inside. I could go on and on. Let’s just say I woke up with so much shoulder pain that I don’t know now if I should try the pillow again to reduce pressure on the shoulder. But given my hands and knee were also swollen and screaming… It’s not the lack of pillow. My injections under CT guidance will be next Friday. See my rheumy on Tuesday where I will tell her that we are not making any progress with the fight.

Blood tests done tomorrow that she will need. Ahh, the costs!

But…As bad as this morning has been, waking up in the worst pain ever and with my right side swollen and stiff and more painful than the left, with yesterday having included my begging the children to, “please let me rest for a while!!”when they came looking for me, my forcing myself to cook and do laundry when really I felt like my body was in revolt and I needed to lie down, I will mention some positives.

The friend who totally understood the ramifications of the next operation. Who hates the constant pain I’m in and was teary not only about that, but my one autistic child’s academic struggles. I am grateful that someone can sit in the reality. To think, “Hang on, surgery again!??? And the procedure sounds…” and “What about the teens’ exams, when do they write in relation to the date of the op?”

It is not nice, having surgery after surgery and to have that also felt by others was refreshing and appreciated. Especially when it means I can’t fight the stupid AS given I have to take a month’s break due to surgery and there’s still elbow surgery after this.🥹(I want to schedule it after my teens have finished exams because I won’t be able to care for the younger children with one hand only and a broken body to boot.)

I am thankful for Sunday National Benchmark Tests. I mentioned to three people how my son said they are all written on Saturdays (for University of Cape Town application purposes.) But one sent me a list of Sunday dates from last year and I knew we’d be ok. I googled and indeed, there are Sunday dates. When my daughter then went onto the laptop to apply, she very easily saw the options and chose a Sunday date for the tests. And then my son did too. July 7, 7:30am.

I’m thankful that though we can’t fully enter my angel’s mind and she can’t tell us what’s in it, there are moments of connection. Where she pulls me to whatever creation she has been working on and wants me to sit and watch her as she keeps working on it. It’s hard, balancing everyone’s needs- educational and emotional while trying to be good to myself. I would love a full time nanny and a cleaner as the doctor said this week. But for now, I’ll be thankful for moments of connection. And it also makes me even more thankful for the ability to communicate that I had taken for granted with my other children.

These things I’m thankful for today are all ‘minor’ in the great scheme of life. But the major things like health- are under attack. So I will be thankful even for the small things. I know life isn’t a chess game where God moves things around for our benefit so it wwwns trite to thank Him specifically for tests that happen on Sundays as if He orchestrated it. But I am thankful that things worked out.

Also, the faster you put the needle through your skin and into your body, the less pain you feel. I felt NONE this week and I injected super fast. We won’t mention the actual medicine when it enters.