The truth about living with Rheumatoid Arthritis

The saga of the Cleaner from Disability Support or how hard is it to get a little help?

For the last few months I have been very sick and spent most of my day lying down.  My house is a mess. I’ve missed appointments.  I’ve not been managing.

So I applied for disability support.  Friends told me about their cleaners and gardeners and personal care workers and I tried to get help like that for myself.  Especially as some of these people have partners at home who could keep their houses clean, and help them with their needs.  I do not.

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Memory problems and this is not normal for me

Yesterday I called my GP for an appointment for pain medications.  It’s my usual monthly appointment.  He was booked solid, so they fit me in because I’m a frequent flyer and several of the doctors down there won’t prescribe my narcotics. They all refer me back to my usual GP.  He is the owner of the practice, and the other doctors just don’t want the headache of narcotics. As an aside, he put me on notice that he would not be prescribing these drugs forever. And that I need to taper off.  That isn’t really going to work for me.  But that’s another post.

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Surgery and the truth about why I hate it

I lied.

It’s not the surgery. It’s not the anesthetic.  It’s the last surgery I had. A simple gall bladder removal. 24 hours post op I was back in the ER with complications. From a simple gall bladder removal.  They thought I had a perforated bowel.  They transferred me by ambulance from the small local hospital to the major hospital at 4am for emergency surgery.  They told me it was very serious and asked me repeatedly who they should call.  Over and over. Who can we call for you.  That ambulance ride was terrifying.  I have never felt so alone and scared in my life.

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It can’t be that bad, why are you having surgery? (cubital tunnel syndrome)

“Well it can’t be that bad, if you’ve been putting up with it for more than two years.  Why are you bothering with the surgery?”

Yes, this was just said to me by someone near and dear.  They seem to think I’m having surgery for fun.  Even though I’m pretty clear about what a huge chicken (and I do mean huge) I am about anesthetic, and how much surgery is NOT fun.

They’re questioning how it got so bad.  In a disbelieving way.  As in, it can’t be that bad. You’re exaggerating.

I’m not.

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