Too Many Patients

There’s been a loud cry for a while now about how there are too few rheumatologists not only in my country, but everywhere. And some places, there are none at all.

It’s bad when you need to start treatment but have to wait months or years. And that’s before knowing what you have. By the time you see one, your undiagnosed lupus might have killed you as what happened with a relative. And as much as I love GP, they aren’t specialists. My GP didn’t even know what Enbrel was so didn’t get the significance of my having to tell her why I’m being extra cautious when I got sick last week. She had to open her medication textbook to look for it. And had to ask me how to spell it.

Meanwhile, when I ask for an appointment for my son, I don’t get anywhere. No commitment, no response.

Too many patients. Too busy. And we fall through the cracks.

I saw my newest rheumatologist on September 22. She said she’d send me a link to the Back to Action AS exercises done by NASS. I’m glad she was so specific because she made it easy for me to find them myself when nothing was sent to me.

She said she would send a gastroenterologist she works with my referral so they can do a baseline colonoscopy as Enbrel isn’t kind to the bowel.

With my finances in a dire strait, and my not knowing if med aid will pay, I will book one myself for January.

Slipping through the cracks.

What if Enbrel DOES do something to my bowel? But also, I don’t have the funds… And again, remember the gastroenterologist who refused me a colonoscopy when I asked for one??? This year way before Enbrel came onto the scene? THAT would have been a perfect baseline scope.

Readers… It’s lonely. I don’t have friends (good for them!) with AS. Plus it’s so different for each patient that I’d need maybe five of them in order to get answers to some of my questions. And they’d all need to be on Enbrel. Tall order!

I don’t know. I blog when my heart is heavy these days. And it’s been heavy a lot lately. I’m sorry. Truly sorry. Even vision therapy is more heartache than happy at the moment. Early days yet, we only started last week. We’re working on getting rid of primitive reflexes. But it’s needing way more motor planning than my poor children can do. And I feel sad for them. My teens watched me trying to help one to CRAWL …CRAWL and they exclaimed, “ Wow. It seems it takes a lot of concentration and effort to do this.”

There’s a lot that makes my heart heavy. Will we manage to stay on schedule? I don’t know! Especially not with my painful body. I honestly can’t. It’s very physical and your body has to bend down low. If I couldn’t even do more than a half a meter of weeding in the garden…

Let me change topic.

Maybe not.

Sometimes, life is about gritting your teeth and faking it. There are times when you really can’t see the silver lining because the darkness is really that dark that it swallows the light.

Intellectually, I know they are there. I know it! But engulfed in pain, not knowing when I’ll start trying to fight this insidious disease, with my children’s exercises showing me how bad my bones are besides the NASS mobility exercises themselves that I can’t do, it’s really hard to appreciate the good because the bad is constantly there. There’s no break.

And I want this virus or whatever it is to just go so my head and chest feel better and I re start treatment.

All one can do from the outside looking in is bear witness. And I’m grateful to those who try and shoulder a burden even I can’t shoulder despite it belonging to me and me alone.

Yes, I am a Christian. But even Jesus had friends. He didn’t live in a vacuum. We all need some love and support and closeness. And that’s something many can relate to whether dealing with poverty, unemployment, special needs or whatever the most PC term is overseas, or chronic illness.

Let’s keep gritting our teeth. We’ll either die one day, or God will come. Either way, it WILL end.