social media woes

I’ve been quiet for a few days. Friday was the anniversary of the fire (yes, April, Friday the 13th, 2007) on a day of the year I have no superstition about but well.. human memory working the way it does it is now a date that has meaning.

But I also saw my hand surgeon on the same day who still wants to do carpel tunnel surgery, but who is also letting me take the time I need to consider everything.

And with Rheumatoid arthritis is it is a lot. I mean a lot.

So here we come to the woes. Social media is a weird place. We get so much information but can only absorb so much. And it seems my repeated explanations of my situation has not been absorbed.

The other side of social media is the desire for new, which means those of us who were pioneers back in the day get treated as noobs when we apparently resurface in a community. And this includes when we talk about health conditions we have been dealing with for more than a decade. But I’ve been getting it with other communities as well.

And both of these issues have been heavy on my mind and on my soul for some months now.

Back to why this instance was so hard.

My surgeon also said I can have the fusion therapy any time from now.

That was so crushing, I can’t even think about it and not cry.

And again, people who live without this condition have no clue why it’s such a big step.

So I’m going to straight up say personal hygiene becomes super incredibly painful with disease progression. But with fusion the pain goes, but degree of difficulty increases.

I asked about this and literally the fix is surgery to fuse one hand bent forward and the other back.

It was so matter of fact and without any real thought as to the emotional baggage that carries. To have a hand fused in this position specifically to use the toilet.

So why fuse? Pain and to make my wrists stable. And this is why CTS surgery is so hard to decide on. I may not even have CTS. My nerve conduction test was not able to diagnose.

My wrists are a massive mess. Bones are missing entirely, and my ulnar sits on top of the small bones in both hands. That has an effect on how tendons and ligaments attach. And the back of my hands have big numb patches.

I have no idea if the surgery will help. In normal circumstances yes, it would be helpful as all the therapy post surgery helps. But RA patients are not in that position. I’m having trouble stretching now as I can’t put weight on my wrists to stretch where I need to stretch.

Not to mention there may only be five years relief. This is also why wrist replacement is not on the table for me.

So aside from the joint instability there is the massive risk of infection. And given I’m back on antibiotics to fix the cough I still have from July last year from the flu (actual flu yes, had it maybe a few times in my life, the last two had me nearly calling an abulance) it’s really quite a significant risk.

In RA I have a line of white blood cells that shed self antibodies. They prosper because well, there is a lot of tissue that matches those antibodies and our bodies tend to put effort into producing productive antibodies.

So one therapy I’m on is an antibody to the blood cells making my self antibody. So this means my immune system is kind of endlessly targeting my own tissue, be it my synovium (surrounds joints and many other tissues) or these white blood cells.

The other therapy I’m on suppresses fast growing cells. White Blood Cells are right up there. But so is skin, and so I have slow wound healing.

I really hope this shows how much thought has to be given to any decision about health. I’d prefer people asking about why than just telling me they didn’t experience the same thing. If what I write is confusing tell me and ask what I meant. It’s not really difficult.

And I really really need to find answers from the RA community in terms of outcomes for a much better picture.

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