Tag: axial Spondyloarthritis

My Aunt

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I had a lovely aunt from my maternal side of the family. Gentle, soft-spoken but firm; loving and tender; suffering greatly from the loss of a husband, a daughter, then her son in law, leaving her grandson orphaned, she was love personified.

She was the only genuine mother figure I and my cousin’s wife (Cousin being son to a different maternal aunt) have had. But Covid-19 took her, and our world, our only taste of unconditional ‘parental’ love went with her.

She often used to phone me, just checking on me, on us. Not because she wanted to know how her sister was, but because she loved ME. She never complained, just stated facts when I asked how she was.

She wasn’t well. Bone pain, diabetes complications, heart problems, in and out of hospital, in and out of comas. She suffered terribly. She wished she was dead.

And so, when Covid-19 took her, it was truly bittersweet. Finally, she was free. Finally, she was NOT in pain. No more would her days be either “not too bad” or “awful.” There was no more of a life of “bad” to “worst ever.” But oh, how I miss her. And how saddened I was that she had to suffer before finally dying.

At the start of this year when I was still semi-active on my Facebook page, I shared that finally, after 12 years of trying to get a diagnosis and cure, I got one. Except the disease is incurable and progressive.

Some girl commented, “That’s sad. Oh well! At least you know what it is now!”

Seriously, if someone hasn’t asked you to find them a silver lining for their cloud, don’t do it. Don’t find one for them. Just sit with them in their bad news. In that moment, feel with them what they are telling you they are feeling. I wanted a diagnosis so the suffering would end! Here we are in April and nothing has changed! I just have a name for it now.

I’ve not ever had a ‘happy and healthy’ life. I don’t know anyone in my life who has been in my shoes. Born too early, I was born into suffering. My first ever childhood memory is of me crying in pain after surgery at age three. I can’t describe the exhaustion of being in pain my entire life. I wish I could. I wish so much that I could give a glimpse, give people just a day of what I’ve had my entire life. The tests, needles, operations, loneliness, hallucinations, X-rays, breathing treatments, Emergency room visits. The sufferings I shared with my parents, and the suffering I hid. The extreme pain I didn’t think to share because I thought it was normal. Oh my word. How sad. How sad for the little girl that was me-not telling my parents about the leg pains, the burning, gnawing abdominal pain…They eventually found me rolling around crying silently in bed, which led to a Crohn’s disease diagnosis of seven year old me. SEVEN YEARS OLD. A junior school teacher I never told them snot even after the diagnosis, who seeing my tremendously thin frame asked if my parents don’t feed me.

And so, after decades of the same. Year after year… I am done. I am truly done. If I didn’t have children, it would be very difficult to justify staying alive. When you look at it through cold, hard, non-emotional eyes (Made that up.) , there’s no reason to keep living. I can’t be the person I wanted to be. I can’t visit the sick, I can’t drive to hospitals and find the poor and give small gifts. I can’t be a volunteer. I can’t gos day without pain. That’s kinda messed up. There’s much that I can’t do to be helpful to anyone else. And instead, I cost money and ever will. The costs will only increase. They are only increasing. I’m already going to have to pay over R2000 for today’s rheumatologist visit that a sweet friend remembered yesterday that I’d forgotten was so close. Thought I had a day to go. My ineffective pain pills from the ineffective gastroenterologist already had to be paid for by me despite my medical aid plan.

There is no silver lining. So, don’t tell me “at least” I know what it is. I wanted to know so the suffering would end. It’s not. This is money we desperately need for the children. University is coming soon. The other children need more (specifically my ‘ausome’ ones and ADHDers.) My “at least” will be like that of my aunt-my children will mourn my death, but rejoice that I’m free at last.

I embrace the end. Many of us chronic pain sufferers do. And while we wait, we hope for a ‘better’ day. And we rejoice in those who see us. Who see how hard it is, who cheer us on, celebrate our doing what’s normal for others but almost insurmountable for us.

Delay to Diagnosis

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Our country’s Axial Spondyloarthritis Association sends out info about their global meetings. Through that, I found the British NASS. Ankylosing Spondylitis (Heresfter referred to as AS in my blog) is one of the types of Spondyloarthritis… They say that diagnosis takes around eight years and is around two years longer when it comes to diagnosing women. In fact, they used to think it’s a men’s disease. One woman was even told this year that she can’t have AS BECAUSE she’s a woman!

What is AS? My understanding is that it’s an autoimmune, inflammatory arthritis that is progressive, incurable and leads to the infamous hunchbacks you see due to the finding of the spine. Some people fuse straight as a ramrod. Once your bones are fused, you’re stuck in that position for life. So you can have people who are stuck looking down for life. It has many comorbidities and can shorten your life depending on which organ it attaches and how it attacks it. It’s scary. In White patients, the HLA-B27 gene is expected, but Black patients usually don’t test positive for this gene. I didn’t. It tends to run in families. It might be in mine.

Why “my understanding?“ Because my rheumatologist didn’t tell me anything about it!

So, as a teenager, I was diagnosed with Juvenile Rheumatoid Arthritis. I was never sent to a rheumatologist. And all the GP did was to give me Voltaren gel to put on my aching, swollen joints. For many years thereafter, I knew that winter came with terrible pain and inability to use my hands. I I wouldn’t be able to hood a mug, couldn’t bend my fingers to iron and the pain was horrendous. Winter was bad.

I was active. Jogging, exercising for an hour each day, walking to campus, walking a LOT and far, for exercise. By my early twenties, what I now see as signs of AS started up. I had a warehouse job and walking caused a lot of pain in my feet and lower back. None of the other employees complained as bitterly. I changed job but even in the next job, my back was painful. I thought maybe the nursing home residents were too heavy for me. So I found yet another job.

In 2011, I was sitting on a stationary bike when the most awful pain hit my sacrum. That’s when I started seeking help. But none was to be found. An MRI in 2015 didn’t show much. An X-ray said I had disc height loss in my lower spine but they said that wouldn’t cause the amount of pain I’m in. Nobody sent me to a rheumatologist. I was told to see a biokineticist, a physiotherapist.. None of them helped. They said it was due to low core muscle tone but I knew it wasn’t that.

A chiropractor said it was because I carried my child on my hip. (Soho come others weren’t in such pain??) I’d stand for a while and then have to run to my room to cry from the pain. Along the way, a doctor guessed that I had SI joint pain as my hip also became excruciatingly painful.

I gave up.

But the pain didn’t. It got worse over time. My joints stopped swelling as much but my lower back started to scream. By last year December, I couldn’t take it any longer. Is reached the stage where I was being God to kill me every night. Sometimes I’d try walk and my leg would buckle. I started limping and having to shorten the evening walks with my husband. High impact exercise caused a lot of pain at first, and then all exercise once I stopped high impact, would mean the rest of the day would see an increase in pain earlier in the day.

I couldn’t cook without having to take a break to lie down. I couldn’t clean. I was in agony.

I went to a pain clinic where a GP sent me for a bone scan. I have arthritis and degeneration in my pelvis, shoulders, neck, elbow, knees, right foot. Oh yes, from my early 20’s I used to beg my husband to rub my heel. The GP said I needed facet block try injections and radio frequency ablation to get rid of the pain in my joints. But this didn’t address the enthesitis the scan also found. (Inflation where ligament or tendon meets the bone.) That, plus other reasons saw me canceling the attempts at pain relief

I saw a GP who agreed with me that I needed to see a rheumatologist. But the one with great reviews, a Dr Brijlal even this year can’t tell me when she will be available. Another was only available this month, and I was desperate in December! So I took an appointment with one who was available in January. (Seems to me that the ones who have space early aren’t great. Just my own opinion and based on reviews.)

He sent me for an MRI of my sacrum after marveling that I was about to smile given the results of my bone scan. In his words, I was “full of arthritis.”

The scan showed Ankylosing spondylitis, especially in my right side. The one that frequently became so painful and locked that I couldn’t step on my right leg without lurching about and making my husband offer to carry me.

He gave me a prescription. I asked what the needs on it were. He said, “It’s painkillers. Don’t worry, I know you have chronic gastritis so it’s not anti inflammatories.” That’s all he said. No instructions, no telling me what each medication was. The pharmacist was appalled!

He’s sent me for Omeprazole (a PPI) to protect my chronically inflamed lining from the Prednisone he’d put me on. And sulfasalazine. One of the meds you start with when treating AS (and a few other arthritis, according to the insert.) This doctor didn’t tell me how many months I’d take the medication, didn’t tell me why, didn’t tell me anything. He also injected me with steroid and anti inflammatory.

That, plus my discomfort at having to disrobe and be so closely inspected have made me seek for a female rheumatologist. Another great one set up an appointment for me for NEXT YEAR MAY!! 😭Too far. So I’ve found another who will see me in the meantime in May, which is when my next appointment with the rheumatologist was to be.

I’m nervous. Some doctors have shown a very racist bent and she’s old. (As are most of them. Not next year’s one though!) But very few of us Black people have AS and the one in my SA group who does is in a different province, so I couldn’t ask her for a suggestion. This lady was recommended by one other patient. White patient.

The pain has increased dramatically. (I suppose the effects of the infection have worn off. I saw the rheumatologist early in February) It’s as if I’m not on any treatment BUT I still am not waking up begging to die in the night, so I guess the Sulfasalazine is going something-four tablets a day. The prednisone is more dangerous so I only took it for a short time. It’s for when flares are super bad.

And that is MY delay to diagnosis. I sought help in 2011 and only got a diagnosis in 2023. Many are on chemo meds. But those are expensive and most health insurance companies don’t pay for the needs unless you’re paying a lot each month. A lot lot. We’re paying a lot but not the highest amount so I’m not sure what to hope for. They can work much better but if I can’t afford it, what’s the point in hoping doctors move me onto them?

In the meantime, I wake up in the night in pain. And I spend the day in pain. Diagnosis hasn’t helped much. But it’s a start.

As for my children? My teen daughter started with the “sausage digits” maybe two years ago. Even just barely touching things would cause intense pain for her. It hasn’t progressed to other joints like it did with me. And my son has a hunched over back at his upper spine. He too gets swollen fingers in winter like his sister and I. Yesterday morning was cool and he woke with stiffness.

Our finances aren’t great but I do plan to ask the rheumatologist if they should see her. Just getting MRIs for them would take away all the medical finances we have for the year and I don’t know what bloods and scans she will send me for. Nor do I know that we’d do anything yet regarding treatment. In the meantime, we will do what the Romans do when they start to swell-NSAIDS. (Which is what the GO suggested for my daughter anyway. That plus keeping warm when winter comes.) Thankfully, they don’t have stomach problems so the anti inflammatories should be safe for them if they eat first.

I really hope they don’t have it.🙏🏾

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.