Tag: AS

Creating Awareness?

Grace by any other name1 Comment

Creating “awareness” is so that people who might suffer the same condition know where to get help, and to educate others not to expect the impossible from you, now that they know what you’re fighting against.

Do others “create awareness” for the rest of their lives or do they ever sit down and say they’ve done their part?

I was diagnosed in 2023. I think know it’s time I retire. It was so major, having a name for symptoms that started in childhood and just got worse and worse. More importantly, it was a disease I’d never heard of. So I knew most of my people didn’t know of it either. If it had been common, I’d not have even begun with “awareness.” Those who are in my world don’t have AS nor its symptoms. And too many of those who are in my world find it very hard to be empathetic. To put themselves in my shoes. You’ll find an asinine comment like the following after I celebrated being able to work till later than normal, “Don’t forget, we also get tired.”

Ma’am, we’re fighting inflammation. We are always tired. We don’t get tired, we just get WORSE as the hours pass. And we’re fighting constant pain and stiffness in large bones. We’re fighting the conditions the disease has caused too. It’s very different to a very healthy person with only one child. If you can’t extend mercy and understanding, then awareness has not worked. You’re still unaware.

And so, my awareness campaign has stopped. It’s now left to those who ask specific questions to be aware and to leave me happily aware that the ‘campaign’ made a difference. One even remembered I am also fighting too, too early menopause yesterday!! That meant so much to me! That’s when I realised I could truly hang up my gloves. Those whose hearts are big enough, have retained all the information. I can count them on one hand, but .. there are people I can count! Some literally have NOBODY at all in their personal lives. I have some who check on me and remember what AS and other conditions do to me! Even when I’ve been silent for months about it.

My awareness creation has ended with the awareness that I am in some people’s minds. They’re aware. And they care. I am GRATEFUL.

What was the trigger for this post? This random image above that appeared on my wall, by Positively Rheumatoid. Fighting my pain and fatigue all day, every day, is part of my life; pretending all day that I’m not getting WORSE as the hours pass. I used to post when things changed, when I’d seen the rheumatologist… But one day when I celebrated working too much and for too long in the night, a very healthy person with only one child shared that they had done the same. It’s NOT the same. If they’d been aware, they’d have never compared their healthy body working late, with mine, which suffered badly the following day. Someone telling you with fatigue as a huge burden you and your pain are constantly fighting that “we also get tired” shows they understood nothing of the things they were to be aware of. Instead of celebrating that for once I was a bit more normal, they think it’s nothing. Purely because it’s nothing for them with their healthy bodies. Also because they didn’t gain from the awareness shared, what an inflammatory autoimmune disease is. And so, they helped shape future AS posts. And this blog helped too. And more the two sisters who ask the specifics are enough.

I’m in a global village and I’m thankful. I can also come across people far away who understand each symptom because they are living it. Again… I’m grateful.❤️

I Know what I Want for THIS Mother’s Day(s)

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I want to do more! You know how it is. All the things you want to do and only remember when you’re busy with something else…

Like noticing how untidy the garage is when you’re busy hanging damp washing in it.

As every mother knows. Well, mothers who don’t have live in nannies, that is. As every mother knows, mothering is your calling and job. So when you have four little ones with autism, ADHD, intellectual impairment and nobody else to talk to and plan activities for them, you don’t have time to do those things that irritate you.

Add active AS, and you don’t really have the ability to fix those things that irritate you either.

So what I want is to go into remission. There are people in my Rinvoq (My newest treatment attempt) group who are in remission. That means no pain whatsoever and they’ve almost halted the disease completely. The CEO if the large retailer, Shoprite said in his book that he’s been in remission for 30 years!! And he knows that when the AS starts being active again, he can find other treatments. I can’t imagine having no pain for the next 30 years!! By then I’d be 75! Better now than never, right??

I want to stir food and not be in pain. I want to lift light shopping and not have my husband ask what’s wrong because I forgot he was there and so didn’t hide the grimace the pain in my shoulders put on my face.

So I tried to do one thing I wanted to do.

I put the kiddies to sleep first. The first one to go to bed is this non-speaking angel who threw a very tiny fit because I took her for a drive that was too short. (third drive of the day) I put their soy yoghurt, peanuts and raisins and peeled and separated tangerines on the table and RAN away so she would not pull me. She stopped her half hearted crying! And by the time I came back out to finish off medicating them, she was happy again.

This was sent to me last Friday when I was hiding from having to do the second drive of the day. (See a theme?) She did the arranging of the soft play therapy toys plus her now too small car seat on the treadmill ☺️☺️

I want to enjoy more of that. Her crazy creativity and moments of peace.

I got a lot of ‘crazy’ tonight. She was in her room laughing and laughing on her own! For 25 minutes straight, my girl laughed and laughed! Then she slept.

The next to go to sleep was her twin.

I set up her electric hot water bottle, turned on her walk heater, tucked her in and told her I loved her.

Two to go.

I forgot about their meds. I hope their dad medicated them. I got busy! But I did give my ten year old an activity book to do before lights off. Then I went…

And I’m now lying here putting my hot water bottle on my very sore shoulder and then putting it on my lower back. All because I did something else I’ve been wanting to do.

I went to the garage, knowing I’d already done grocery shopping and breakfast and lunch. And knowing I should therefore REST! But then, the washing was getting damp in the waning afternoon as dew fell on it so I had to drag my sore body out.

And then I saw it.

The thing I always want to sort out but only notice when I’m busy with something else.

The garage

I focused on this area with the box full of damp books. Damaged books. Damaged by the children. And broken toys and some that could be salvaged. I took all the moldy books and papers out to the fire pit outside. Threw away all broken prams, flat balls nobody uses, all of the stuff that irritates. Kept the dirty cups for sand play. Sorted the “stuff” out. Typical and normal night.

It was fun. Earbuds in so I could listen to music without having my son (Who always comes on the drives his sister asks for) asking me what this word means or asking what language I am listening to while I’m trying to sing along.

I want to be able to do this every day, and not suffer afterwards. Not to have to choose between putting my hot water bottle on my shoulder vs on my lower back. I want to be able to work and know that tomorrow, I will NOT be in worse pain.

I want to be able to use the extra energy Rinvoq has given me without fear of what using that energy means to my pain levels.

I want to be much better.

I want to be able to do all the movement activities I plan for the children but don’t get round to because teaching and doing vision exercises are too much as it is.

I want to be a mother in the way I used to be. I want my day as a mother to be as full or as empty as I choose for it to be. I want to stop doing something not because if I do more then I’ll be in worse pain for more days, but just because I feel like I’ve done enough.

For now, I’ll be thankful that I at least had ENERGY to get rid of everything in here and that was in front and around it.

But I want more.

Is that too much to ask?

But also, I want to be thankful that most nights since I started this ‘not so good for my heart’ treatment, I’ve slept better than I have in 40 years. Counting from when the bone pain the GP said was “just growing pain” started keeping me up at night.

I want to acknowledge that somewhere in this horrible world, there is beauty.

Wins

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Since Thursday, I’ve been consistently limping, walking off because of the stiffness in my pelvic bones. I was even stumbling because I struggled to always lift my feet high enough off the ground.

This video was yesterday, Saturday morning. I had never watched myself before. My husband did once complain that while he had a break on a work trip and the teens were at exams, he had a peak at our security cameras and he didn’t know where I was going, about to take a walk with the small four while clearly limping.

Since Thursday, I’ve slowed down. Pain extreme. Exhaustion bad. I didn’t even reach 9000 steps on Thursday yet my usual average is between 12000-14000. Yesterday was worse. Despite all the pain meds, I didn’t even get a minute during which I could say, “I’m pain free.” It was hell. The pain was consistently an 8 out of 10. You couldn’t ignore it.

Today, for three and a half hours, I had almost no pain. I could fully ignore it and only felt it if an inflamed area got bumped!! It was lovely! I was so scared that yesterday heralded days or weeks of no relief whatsoever.

That’s a win for me! I know the nights are bad, and the mornings too. But I’m hoping my day tomorrow will be like today, at the very least.

Second win.

I haven’t heard her calling me mommy in a year. She stopped even saying, “ Dinosaur” for her dad. But she is still saying words, naming the foods and beverages she wants! That’s so different. All other times, her words would disappear for months.

Also, if you listen carefully, she whispered, “Doll” twice! It’s not the first time she completed or added to something I’ve said. As she watched me pouring cereal into a bowl for her, I said to her, “I put it in!” And she added, “ Into the bowl!”

Other things have stayed the same but a bit better too! I noticed that a “blister” she’d had on her right hand was now looking more like an infection so I asked her dad to take her to the doctor yesterday. Honestly, even if I didn’t have AS, I wouldn’t want to take her. She experiences so much suffering! Things scare her, she wants to leave and not wait, she wants to pull me out the doctor’s rooms and doesn’t want to be examined. It’s traumatic for both of us-her being ‘tortured’ and my dealing with her very big emotions while wanting to cry along with her.

Her dad was also not feeling up to it because of her screams and cries and how helpless he feels. He said he’d take her only if or our eighteen year old son went alone.😅I chose my son, who was NOT enthralled with the idea.

She came home screaming.

But guess what, she didn’t scream going in. Didn’t scream or even want to leave while waiting to be seen, and except for when the doctor wanted to measure her height, she allowed him to do other checks!! The ONLY reason she came home screaming was because near the END of the appointment, she spotted a wooden piece of art that she wanted to take with her.

And while waiting for the appointment to start, she spotted her favourite calming object- a plant! Her dad asked, “What’s that?” And she actually answered!! “It’s a tree. It’s leaves.” And she tried to pull her brother’s hand to pick it up.😅Thankfully she didn’t complain when the answer was no.

All in all, it was the best doctor’s appointment she’s ever experienced. Her anxiety and anti psychotic meds are helping! (We still get angry cries over wanting things to happen that can’t ever happen.) I was right that she needs oral antibiotics, and her brother came back much happier than when he left. I mentioned the being right thing because I didn’t want to send my husband on a fool’s errand and have him return telling me I was being worried for nothing.

Maybe one day she will answer all questions and tell us her thoughts and not just blurt out random words like, “ Tiger!” out of the blue when she does speak. Maybe one day she will answer more questions than she can’t. Maybe one day I will know that she UNDERSTANDS me when I tell her I love her.

Maybe.❤️

PS. The doctor asked if she didn’t need Ritalin or something because of how hyper and all over she was. I am so vindicated! Not that my husband said I was wrong in thinking she probably also has ADHD, but it felt good for a professional to wonder if it would “not help calm her down.”😅 We have over a year till she’s even eligible and I don’t even know how we’d assess her for ADHD given it’s all about ability to focus on tasks and how quickly one loses focus and the weak points that show typical learning disorders found in ADHD. She does not stay still! At all! But, we will cross that bridge when we come to it!

Pain and Providence

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I’m always at a 7/10 on the pain scale. But when flare ups hit, I’m in trouble. That’s when the pain flares up.🤣Just in case there’s any reader out there like me. I used to think it meant that the disease the person was referring to comes to life. But in some cases, it means it becomes a horrible monster as opposed to a raging beast.

That’s where I am. Have been since I think Wednesday when my husband said I’m walking like I need a wheelchair. The pain tablets..no combination of them has brought any relief at all. Nothing. I feel NOTHING. No reduction in pain at all. Just my bones screaming. My bones are behaving badly when I do my exercises too. It’s as if there’s a sudden fast decline this week. Better stop now. I still want to drive etc!

As for injection side effects? 24 hours of heartburn , feeling full after eating only a few bites, nausea… At least if I had side effects AND pain reduction, I’d feel better mentally.

Nothing. I’m lying on my back. This used to help reduce the pain. No can do. I can’t focus on reading my Bible.

Flare ups stink.

Mr Arthritis follower, how are YOU doing today? I hope you’re resting from suffering!

This is not a good Sabbath. Let’s hope next one will be better. And if you’re where I am-let’s keep holding on just a little while longer. Maybe the next treatment attempt will bring relief.🙏🏾

But, I almost forgot the gifts Providence has provided me.

Show off!

I asked my son to take photos for a vlog I want to post on where I am with this disease. My sweet angel insisted that she stop her lunch and “do what Mommy is doing!”

She even took time to reassure her sister who had been overseeing her eating, “Don’t worry! I’ll be back! I just want to copy Mommy.”🤣

My youngest blessing, her twin sister… I don’t know. I don’t know if it’s the classical music that research shows has made improvements in the brains of neurodiverse children; I don’t know if it’s the supplements research has shown help (in much higher doses than we can afford. But I figure less is better than none.) I don’t know if it’s because of specific efforts to engage in speech and for her to watch the videos I make; or if it’s natural progress. But my last born has been talking up a storm.

Well, a storm compared to her “non- speaking” days! And within a few days she’s even modified her speech to be more ‘correct.’ From pulling our hands and asking for “some grapes,” she changed it to “want grapes.” If she doesn’t see what she is looking for, she names it. Remember the frustration for me as Mom when I didn’t know what she wanted? And her reaction to the word “No” is so much better. The whole world no longer knows when she’s upset with us.😊

There’s a lot we don’t yet understand about her behaviour. She only had maybe five things she can ask for-for now!! A lot that perplexes and frustrates. I’m still sad that I can’t do her hair and she can’t even handle it being washed-resulting in some funky smells and a need to shave it off. But we all rejoice in the speech that’s coming despite us putting pressure on her. It’s a huge blessing.

This close -and my funny baby

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I came‘this close’ to crying in front of a plumber just now.

AS is a disease of pain. But you get flares where it’s like the whole world’s pain descends on you. That’s today. After a hellish night where it felt like I sweated all night and was therefore made cold when my nightie cooled down, only to get hot and sweaty again, I woke up to a morning of hell.

I do think the NSAID is helping. My elbow and peripheral joints haven’t been as bad. THEY haven’t kept me awake. But good lord, my hips and SI joints are screaming and yelling and screeching in pain. I ended up sending the behavioural optometrist a run down of things my poor angels are struggling with and how I’m therefore breaking their exercises down into smaller steps, and telling her how the exercises are hard on ME too. I can’t bend over and push and pull. It hurts. Kneeling to push and pull (a variation that has to be done on tiles to make them slide up and down) also is a killer. I explained that I have AS and it’s currently not under control. (To put it mildly.)

I gave the children their school work and went to my room and while asking a friend about their sibling, couldn’t take it anymore and wept, asking her to pray right at that moment. It’s not only the bone pain, but something the gynae did to me in order to test something. It’s a cluster duck (heh heh) of pain.

So, the plumber wanted to see me just as I was at my worst point, where I was in so much pain that I couldn’t hide it. So I hobbled off the bed, wiping tears away and hoped I could manage. He could obviously see the pain as he apologised for asking for me.

What about my “funny baby?”

We have a plan. When she doesn’t see me, Twin B is fine. She keeps herself busy and does her own thing. But if she thinks to come open my door or sees me, then it’s game over. I can’t finish my ironing or sweeping or whatever it is I’m doing in peace. She will grab my hand and take me to my closet and want me to pull things down for her. Some of which are markers that she will carry around after removing their lids. Yes, you can imagine the mess. So I try avoid that.

This time, she spotted a box their combined birthday gifts came in, and wanted it. So for the sake of peace, I brought it down. She removed some bath soap that was given, and because of the shape, thought it was toothpaste. She took me back to the kitchen and wanted me to bring her toothbrush down. (That’s how I knew she thought it was toothpaste.)

I took her back to my room, with her protesting all the way. I told her we’d wash her hands. She shouted in anger, “Wash!” And cried even more. But I took her anyway.

I picked her up and sat her on the side of the sink as she cried, turned on the tap, put the soap on her hand and boom, tears all gone! She was so happy! Totally in her element. I ended up having to put the hand towel over her lap as she was now wetting her skirt and leggings. Then she started splashing her face and ‘washing’ it. It was too cute! So much for those initial tears!❤️She also tried to drink the water by sucking at her fingers.

Eventually, we were both done and both happy. And she stayed happy for the next hour❤️

Stand Up and Be Counted

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There’s seemingly only one group in my country that deals with AS. It’s run by a leader who I’ll liken to Chairman Mao. She’s only nice to you if you belong to her ‘communist’ party, if you’re not a communist like her, too bad, you’re on your own.

Not good.

I posted in an international forum and the only answer I got was basically impossible to do here in Africa.

So, in this Facebook group run by Chairman Mao, people post asking about the cost of Consentyx, Enbrel or whatever biologic they’re going to be put on. Far as I know, biologics are medication, right?

But let’s back up a bit. I joined a WhatsApp group that was for my specific province. I asked a question about my eye- when it turned out I had scleritis. I got maybe two answers max. Only one answer was that I should see a doctor. (I’d asked if I should relax because it’s pink eye, or if it’s one of the eye afflictions we tend to have as AS warriors. I’d never had pink eye before so I didn’t know if my symptoms were it or something else. )I felt so ignored, unseen. It was lonely…Support groups are meant to support you.

The very next week, someone asked the same question. Someone who is closer to being communist than I am. The answers poured in, showing lots of concern and telling her to hurry and go to the doctor quickly “because you can’t mess with your eyes. It can go bad very quickly.”

I should have left. I should have left. But I thought maybe I was seeing an issue where there wasn’t.

I know, that was too optimistic of me.🤦🏾‍♀️

A few weeks later, I shared a photo of myself wearing my AS warrior top. A few people asked where I got it. Given the group is ALLEGEDLY all about spreading awareness, I cheerfully shared the number and name of the person who did the printing.

Chairman Mao responded with a, “Do not use this group for advertising.”

That time, I DID leave. It was her tone, like I’m some naughty child. And it was the fact that they had been going on about spreading awareness and this was a tool for awareness

So, back to the Facebook group. A non communist like me joined the group yesterday. She said she’s on treatment but is struggling with terrible pain at night in specific joints and was asking what to do.

Nobody had answered yet when I saw her her question and responded to it. I told her that despite my being on Trepiline which supposedly also aids you with sleep, my sleep is extremely disturbed by pain so I can relate. I mentioned that I’m waiting to start biologics and asked what treatment she’s on. I ended with sympathy for her struggles.

I never received a response notification so I went back in to see why. She’d sounded pretty desperate after all. And I’d wanted to tell her that the med she’s on takes a while to start having an impact, or to tell her to ask her rheumatologist if there’s another option she can try. I just needed to know so we can hope it would yet take effect, or ask her rheumy for further help. It’s been quite a few months since diagnosis.

I realised why I hadn’t received a response to my comment. Chairman Mao had erased my response.

And she’d written that we must not discuss medication.

Do not discuss medication in a group talking about a disease? Excuse me?

And what??

I posted screenshots of where communists like her had spoken about medication, naming steroid injections, talking about Salazopyrin dosages etc.

My goodness, she’d made her communism so apparent.

And so, I left. I didn’t even wait to see what communist nonsense she’d spew to defend herself. I left.

And yes, by ‘her communism’ I mean her racism. I don’t see any other reason why I’d be ignored by a bunch of non Black people, while non Black people with the same problem get lots of support. Nor do I see why she’d only rap a Black person on the knuckles for something White people had been doing all along with no reprimanding.

And why not just issue her command without erasing my sympathetic comment? Was she wishing she could erase the new member and I too? That was the height of arrogance and rudeness. And lack of respect.

I remember sharing some thoughts from the group and my Black friend asking if it’s rare for Black people to have AS because not a single Black person had said anything.

Maybe Chairman Mao made the group so uncomfortable that many left. I’ll never know.

So here I am. All alone. Dealing with a rare disease and no support group.

Better that than to be belittled by some small woman with a large ego.

And I hope they do take my name off their register as I requested, they don’t represent me after all. If they did, one of them would have spoken up.

But they were all silent.

They are all complicit.

Silence is painful. I hope I speak up for anyone I come across who is being blatantly unfairly treated. I hope I never participate in the erasure of someone, but show them that I see them. I hear them. They matter.

What’s Going On??

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Tomorrow I see the surgeon about whatever is going on post op, deep inside. Not the actual wound, but below. Started with a small big pea-sized lump and it’s now a huge area of pain. Well, as big as my hand. Woke me with a huge wallop this morning at 3am and is still aching badly. Literally felt as if something smashed me inside.

I’m scared. I’m scared of the costs of diagnosing the problem, and what will be entailed in fixing it.

I got a call from the rheumatologist’s rooms. The PA said that after long deliberations, I’ll be put on Enbrel. She had said she would send forms, but I haven’t received them. The next step will be to send motivation letter to medical aid.

I’m so scared. I looked up the costs. They are impossible! Google says you’ll inject yourself every week and that depending on the dosage in each injection, I’ll pay between R4300-9000 per jab! That’s weekly! No way I can do that! And my med aid plan is one of those that orders have 100% said didn’t even pay the 80% the more expensive plans pay.

I need this. I’m in so much pain that I can’t even do my AS exercises themselves. And the thought of it progressing without me at least slowing it down… I have my cane. But I want to have the opportunity to feel so well that I don’t have to use it.

When will my body cooperate?

Let’s hope the cause for the pain is diagnosable and fixable. In an affordable manner!

Next up-the red carpet funeral.

Well

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Yesterday was awful. I woke up feeling drugged. I was so tired that I wanted to cry. Even my husband was concerned. But, I couldn’t rest.

I guess I know why… My body was working hard to create more chaos. So we have the huge joints, and my shoulders, a knee, my fingers, feet and now this. You know how you’re meant to rest when tired and pregnant as your body is creating a human being?

That’s how I feel. An exhaustion I can’t combat. Fatigue I can’t fight. But chaos around me that I need to try control. Like checking my one twin isn’t pulling anything off my shelf and turning around to see that her twin has taken something I just finished ironing and is playing with it.

Like being so happy that they love the flowers I was given. But having to sort the mess out. I could sleep for hours. Alas, homeschooling parents of little ones who don’t have support can never rest.

Many doctors focus on the pain, but the fatigue is also a hugely detrimental symptom for us. Let’s see if I’ll ever get treatment that will help.

Dinosaur Rheumatologists

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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.