Dinosaur Rheumatologists

Grace by any other nameLeave a comment

When I was a teenager, my knees, fingers, toes and feet started being extremely sore and swollen. I wouldn’t be able to hold my pens at school and my friend said I was walking “like a granny.” I was told-after numerous tests-that I had Juvenile Rheumatoid Arthritis. For years, I accepted that. All they did was give me an anti inflammatory gel to rub on my joints. I was resigned to the pain and stiffness. I wasn’t able to curl my hands to hold a cup, the iron… I couldn’t bend my fingers to write.

But for the past two years, that has not happened in the same way, or to the same extent as it used to.

On the other hand, my lower back pain increased dramatically. It was in my early 20’s that I noticed that I wasn’t as ‘well’ as others my age and younger. I worked in a warehouse and my feet, legs and sacral area were sore while others were still strong. I quit that job and found a caregiving job. That too strained my back but I didn’t pay much attention to it till 2011.

I remember the day vividly. I was sitting on a stationary bike and this awful pain shot through what I thought was my coccyx. And it didn’t let up. I’ve had X-rays, MRIs and all I’ve been told is that it’s mechanical, it’s because my hips aren’t swaying enough when I’m walking, and because I put my daughter on my hip. I’ve seen doctors, chiropractors and physiotherapists. No can do. I stopped looking for answers.

Till last year. I was waking up in excruciating pain, begging God to kill me. And so, one last time, I tried to figure out why I was in so much pain. I went to a pain clinic and the GP there sent me for a bone scan. And there it was. Multiple sites of arthritis. She told me I had osteoarthritis, “ordinary wear and tear” and suggested I get facet block injections into my spine and SI joint. After that, a rhizotomy. (Basically killing the nerve so doesn’t feel pain.)

But there was also enthesopathy (inflammation where the ligaments or tendons join my bone) in my lower limbs. What about that? And if the pain and cause were “ordinary,” how come none of my fellow 42 year olds had struggled with intense pain?

I ended up seeing a different doctor. After all, the treatments weren’t guaranteed to get rid of the pain, I didn’t trust the way the enthesopathy (enthesitis) was ignored, and they hadn’t given me a time the day before the procedure was meant to take place in theatre. How was I to get my ‘driver’ ready and available if they didn’t know when they’d need to take me home? Not fair!

Long story short, I ended up seeing a male rheumatologist. He is not my cup of tea! Very uncommunicative. Sent me for blood tests without telling me what he was testing for. He did tell me my mobility was not good! But he gave me a prescription but didn’t tell me what the medication was that he prescribed! I asked him and all he said was, “Painkillers. Don’t worry, there are no anti inflammatories. I know you can’t have those.”

When I got to the pharmacy, it turned out he’s prescribed Omeprazole to protect my messed up stomach lining, Prednisone for three months, and Sulfasalazine for the foreseeable future. I’d never heard of the latter in all my life! And I didn’t know what he was using it for. Four tablets of it per day a day and no explanation! He tests my urine but doesn’t say why either.

I tried two highly rated rheumatologists. One doesn’t even have a date that I can book an appointment for, and the other set me up for next year May!!

An email from the axial Spondyloarthritis association of our country said that we are short of rheumatologists. I can believe that! And most, just like overseas ones, are old. What will we do when the dinosaur rheumatologists retire?

From that first meeting, I also left with a form for an MRI. At my next appointment, he didn’t tell me my results, I had to ask him, though by the time I saw him, I’d already seen the results on my medical aid scheme (health insurance type company) app!

And that is how I was diagnosed with AS.

Woohoo!

Grace by any other nameLeave a comment

My three year old -soon to be four-is a twin. We suspect they both are autistic but she’s more challenging because her feelings are super strong and she has minimal speech. When she wants something, she will take your hand and lead you to it. If she says “Mommy” know that she won’t say it again till a few months pass. If she says “toes,” there’s no guarantee she will say it again. She is truly what I imagine a minimally speaking autistic is like.

But hey, it’s a step from non-speaking. And if she goes back to no verbal speech whatsoever, I hope she will learn to type or use some other form of AAC to communicate with. I know some adults who just have never been able to communicate in any understandable way. I can’t imagine how frustrating that must be!

This past week, she has been saying, “Some mik” or “Zhoos” when she wants a milk or juice. I always ask, “What do you want?” And then after a brief pause, answering for her. (Last thing I want is to ever make her feel pressured to do something she cannot do, or force her to try do something her brain stops her from doing. Thinking of the adults who said they want to talk but the words become stuck as if behind a wall, and the mouth won’t produce what the brain is thinking.)

But today. Just now… She did it. She took my hand, led me to the fridge. I asked her, “What do you want?”

And for the first time ever, she answered verbally! I am teary just typing it! She said, “Ice lolly!”

I’m so so excited and so, happy!

I know it’s very inconsistent. I know it’s rare. But… It’s possible! And today was the day!

Let’s Try That Again!

Grace by any other nameLeave a comment

I had many view for someone who had only just begun their blog, and after looking for my blog and finding some unknown (to me) website bearing the same name, it made sense. So, I’m no longer going to use The Daily Moan.

Where was I?

I’m a mother on the dark continent, right at the bottom. I prefer anonymity because of my relatives. They are unloving, adoption-hating fake christians, so the less they know about me, the better. And specifically, the less they know about my health that they don’t care about, and my children’s struggles, the better.

I have a large number of children, many of home are neurodivergent. I hope I wrote that correctly! This will be my space to vent and to share. To celebrate and to rejoice. Hopefully, any other mom who comes this way and has a child or children with my children’s issues will find hope. What I don’t like is causing pain to mothers whose children’s abilities are extremely limited. I know how painful it is when you know that though your child has that same ‘label,’ they won’t have that same success story. For me, whose autistic children also have global developmental delay, the miracle I will celebrate won’t be the same as the one someone like maybe, Greta Thunberg’s mother will celebrate. I hope I never cause pain. I hope this blog is either found by people who have totally different problems but want to know how others cope, or by those whose children are less limited than mine are.

As for myself? I have a few health problems, and ankylosing spondylitis. In the next few posts, I’ll share how I came to that diagnosis.Things here in A—ca are very different to those in the Western world. Or, to be specific, the supports I’ve seen in Britain aren’t at all even close to what we have here. I feel like we’ve been forsaken.

Anyway, I had a bad night-lots of joint pain- and I’m feeling terribly sleepy so I’ll end this post here before I write something totally unintelligible!