Tag: axial Spondyloarthritis

Distraction Time

Grace by any other name1 Comment

I stupidly tried to sleep on my tummy. Bad mistake. My neck doesn’t like being turned. Nightmare woke me as usual as the pain reached a crescendo. Hey, it’s better than when I forgot to take the pillow away. I woke up with my right arm down to fingers paralysed, totally convinced that the arthritis in my neck had now permanently damaged my nerve, imagining having to tell the rheumatologist and get more testing.

I’m tired of the testing.

Then I couldn’t sleep. (It’s currently 3:47am) I, even more stupidly, then read the news. An obese journalist died young. Was she dealing with thyroid problems or other health issues that caused her to be obese? She’s younger than I am… Then again, look at me. I had foolishly (See a theme?) hoped I could stop my anti hypertensives but nope, after a few days of not using them, the Rinvoq induced high blood pressure returned and I had to start them again yesterday. So maybe we are both as unhealthy as each other, thanks to AS. My children’s dad did say so helpfully on Sabbath, “You’re going to die. I’ve been listening to a book about sleep. You’re going to die young. You’ve never slept in all your life.” Yeah, very cheering. Especially as it was after I came across research stating that just three NIGHTS of bad sleep raises heart attack risks.

Change topic.

Oh, but now I can’t breathe well. Why didn’t I use my inhaler last night? I’m just tired. Tired of all the medicines fighting the disease. Tired of the medicines fighting the medicines fighting the disease- including the esomeprazole fighting the anti inflammatory impact on my sick ravaged eaten away stomach lining. Tired of the Rinvoq constipation making IBS worse so now I take Soflax tablets for THAT.

Tired.

Then I saw how many people have been shot in the past week in our city. The innocent children, the baby, the taxi passengers, the gang violence that is so endemic.

Shared a status about how THAT triggered the “It could have been me” feeling I had when I was about 11 or 12 years old. The Mowbray Golden Arrow Bus Station was close to the taxi rank. Depending on how long the taxi line was, whether my taxi was there, how long the bus queue was and what time I’d arrived there in Mowbray after walking from school in Rondebosch, I’d then choose whether to take a minibus taxi, or the bus.

One fateful day, I decided to just take the bus I was tired. It was there as I arrived. I didn’t feel like going further down to see how full the taxi was or how available it was. Then the bus kept stopping to let people off and on. So much slower than the taxi. But then, as we drove towards Gugulethu, passing through Gatesville, one of the taxis I usually took was stopped. Nobody was moving around. Shops quiet. The driver was hanging out the door held by his seatbelt. The middle passenger had been someone’s relative. Now she was a dead lady with a beautiful perm and an ugly bullet hole in her head. Head blown backwards by the force of the bullet so we could all see the entry wound from our high vantage point in the bus.

Silence.

Fear.

Heartache. I imagined that she was a kind loving mom and now her children would be wondering where she was. I will never forget that scene. It is as imprinted on my mind as the fear when at 16 as I walked to my cousin’s funeral, a gangster who’d been shot in the head, a youth holding a gun came out a house in front of me and I had to walk behind him in abject fear that he’d suddenly turn around and shoot me dead.

Ok. The news was not a good idea.

No sleep.

Too much pain

Chest wheezing.

Time to think about something better. Ok, before that, let’s get the inhaler! I did promise Ammy that I was taking care of my lungs. She had a bad night two nights ago because she heard an ambulance in the night and then thought about me dying and couldn’t sleep again. What compounded her fear was her imagining my collapsing, having a heart attack and dying. Somehow, she links that with the most recent SI joint infiltrations (those deep injections they do into your SI joints) that had – by the time I had driven myself home all the way from Durbanville- made my legs numb so I was stumbling and falling and all three little ones had to hold me up to get me to my room and bed. That traumatised her. She was scared I would fall down a section where we have two steps, and die.

Ok, yet another reason not to try those injections again. Plus the mild pain reduction wears out and they ARE bad for the joints they penetrate.

Ok… That’s again not a positive thought! Hey, the inhaler is working now. Less wheezing but chest sore.

Ok… Really time to dig deep and try pretend I’m not in pain. And no loud noises from my spasming intestines. What can we think about?

School!

My crazy five year old!🥰

I came out the bathroom where I’d been convinced I’d heard her father shuffling around, and went to the front to go start her sister’s braidlocks. Yep, I am trying for the very last time, to get their locs re-started now that their hair is more grip-able. I’ve begged them to never cut their locs ever again. I’m tired. Loose hair? My natural (read-EXPENSIVE) hair potions are used up in a day. My cheap ones, mixed with water for some reason! Put their hair in cornrows? Ammy fidgets with her hair and it looks terrible within a few days. Do wool braids? They style and re-style and do such tight styles that there’s way too much pulling and they’re too young for the traction alopecia nonsense. The missing hair line… Injibhaba in isiXhosa. (Don’t ask me how to type that. The only Xhosa reading I did was the Bible and the hymn book. Those don’t talk about missing edges!)

Got out there, and Nalo called me back to the bedroom to show me what she’d been doing while I was in the bathroom.😅Back I went, leg and hip burning. She was so proud of herself. “I did Maths! Come see! I did Squeak and Scratch!” (Two squirrels who needed five acorns each.)

“See!? Look! I sat down and I did three plus two! It’s incredible! It’s so amazing!”😂😂😂😝😝

“And then I did THIS dangerous thing! The chair was shaking when I was holding on and my feet were up! Ooooh!”

She killed me with cuteness. She is in love with maths. (For now!) Like many children, she loves kinestethic methods of learning. But she loves numbers in general.

I wish we could bottle up her joie de vivre! It would give us so much energy and joy! Life is good for her. She eats, she does school, she talks and sings a LOT during school, sometimes singing the words she’s meant to be reading, or singing the numbers she’s counting…

We could all do with such happiness! We need it.❤️

WhatsApp and..Bras?

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Warning- I have fellow autoimmune inflammatory arthritis followers so I am very real about what active Ankylosing spondylitis is like for people like me who aren’t responding to treatment. I will include nipples.

She has absolutely NO idea how this long running conversation of many topics has been a help. Because it’s through WhatsApp, I can do other things while still taking a chance to steal a glance and reply. And with the level of pain I’m in, the distraction has been perfect. I’m unable to lie down and rest because of parenting duties, so she’s seeing me through the suffering. If I’m in bed and the pain is this bad, I can’t even try converse because I feel so alone in the war that the other doesn’t realise or can’t imagine. But like this when I have no choice but to keep smiling and guiding and leading… I need the distraction.

It’s mental too. My daughters change their clothes multiple times a day. I had tried to keep their clothes in my wardrobe but I don’t have space. I have quite a few outfits like this- three are thick dresses/robes like this below, and four are onesies. Worn because skirts hurt. And with thick material, you can’t see nipples from a body that can’t wear a painful bra. I mention this because it sometimes comes up in AS groups, women asking if it’s just them who can’t handle clothes and bras. Some don’t wear bras at all. Some stay in their nighties all day… All because of the pain..

That means my own wardrobe space is filled with warm hoodies, normal clothes, and these space stealing style clothes. So I took some out and put them back in their wardrobes. Which then results in this.

I just want to cry. I hate mess. I can’t bend down to pick it up. I got a third of the room done via directing the owner of this shared bedroom and then went to see how much I could get if the other one whose owner was too sleepy and angry to be of much help. See those pink fleece tops by the bed? I reminded my girl to hang clothes, put others in the drawer.

Yeah, that’s not a drawer. It’s all day, every day, it’s draining and frustrating. And I’m tired, readers. I’m so tired of being single mom. Last Sabbath, there was someone constantly coming in so so often that I ended up texting their dad about how Andrew Yates was found guilty of killing her five children by reason of insanity and so avoided the electric chair. I told him that one of the things her defense pointed out was that she “only got two hours a week away from her husband and children.” I pointed out that I get no time away and she was healthy. And I added that I can fully understand the South African doctor who forgave his wife for killing their autistic children when they moved to New Zealand and she was alone with them.

He got the message and told them to sit down and stop bothering me. It should not need to go that far. Surely if people know we are constantly bombarded every day, they should automatically give you a break on a weekend? But anyway, it was a warning that this was unbearable, not that I was about to harm the children. because if anyone would die, it would be me. They deserve life. I’m the one who is stressed and sick. So I don’t understand killing the children. It’s selfish – in MY eyes. I’m the one with the problems, not THEM. Why should I get to enjoy life while little children lose theirs at my hands? Even during the worst of postnatal depression, my wish for someone to randomly come and adopt them, or for them to suddenly be taken into a wonderful baby care facility. Never for them not live. I don’t understand it. But anyway, that’s how it is. Constant drip drip of torture. Yesterday afternoon, my five year old came to the room barely 4 minutes after she’d already come and I’d given them activities to keep them busy, and I exclaimed, “Please, please don’t say anything. Give me one minute. Just one minute, then you can come back.”

She didn’t come back right then. She told her ten year old sister, “Mommy is begging for one minute to rest.” So big sister wisely told her not to come at all because what was the reason she was coming? To ask me to buy them a ballerina dress each. Definitely not something that would exactly make me rejoice! (What they don’t know is that I’d already ordered ballerina dresses and they’re on their way.)

Yesterday I realised that unlike a school teacher, I don’t get break times in the staff room. I’m with the pupils all day every day. I don’t get a drive home like my husband does, who then listens to an audiobook and basically ‘relaxes’ on the way home, leaving the work environment. We live work. There’s no holiday or sick leave.

My shoulder. My thumbs. My leg. My shoulder felt more pain just stirring a child’s bowl of maize porridge. Just doing that. That’s the pain the WhatsApp conversation distracts me from. The back. The hip. The SI joint. The heartache and loneliness.

You can’t feel lonely when you’re alternately laughing and being serious.

So next time your sick friend seems very amenable to chatting, even if there might be long pauses while they feed or medicate or remonstrate or hug a child, please do chat if you can. You have no idea the blessing your conversation might be to them. I crave adult conversation and I’m thankful. Yesterday, as my son ate a clementine, he – who knows full well that we believe God made fruit and fruit trees- asked me how people opened up the peels to glue the wedges together.

That’s the level of conversation I have sometimes. The adult conversation is a blessing. Think about THAT too if you’re chatting to a sick mother who is a shut in. Not all husbands ask about the children. Not all husbands ask about progress with spelling or even know the resources being used to help the children. Some husbands seem to exist only to tell their wives about THEIR work. You sincerely might be the only one who cares and knows and gets frustrated about occupational therapists. A story for another day. If she’s chatting, she might be chatting not only because she loves you, but because she needs you.

❤️

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.❤️

Oh, I Want My Amazing Coloured Coat Too!

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We sang this in school. It was one of my favourite choral productions- Joseph and the Amazing Technicolour Dreamcoat. We sang a lot from there, a show I’d never seen but knew was done by someone extremely famous, Andrew Lloyd Webber. We sang a LOT of his songs in our choir.

My friend told me of how she blacked out this week and got injured. The world no we chronically sick people live in is such a parallel world. We are constantly suffering while everyone rose lives their day hot by hour unconscious of the pain, while the moments that allow the sick one to forget the suffering are minimal. I blacked out once at school. Found myself at the bottom of the steps with my friend extremely concerned and wanting me to go to the sick room. But I didn’t want to miss choir, so given I was feeling ok, I pressed on. I didn’t even think to tell my parents. As always.

This is the same school friend who would tell me I’m walking “like a granny” when what we now know are AS flares started up. The pain in my feet would burn so bad and I’d try curl my toes so they don’t hit the floor hard. My toes and finger so swollen I could barely hold my pen to write and sometimes just listened after showing my teacher why I wasn’t writing. I’d get home and make a mug of cocoa but my fingers couldn’t even curl to hold the handle of the mug.

I don’t know why, but I woke up this morning and as I tried to psyche myself up to get my pain tablets but the pain so bad I didn’t even want to move, I remembered this song. It was sung at the beginning and end of the play. For me, it represented Joseph in prison. Alone and sad. Weeping while the world slept. Forgotten. Sold by those he loved. So alone in his innocence. Just like me when I was a child.

What memories does this little one have hidden behind her smile? Nights of pain. Nights of lying on the bed she shared with her parents rolling around trying to figure out why her legs hurt so much, night after night. Doctors claiming it was growing pains. I’m still waiting to grow, then.🥹The stomach pain bringing her first colonoscopy two years after this photo. The daily burning abdominal pain as she walked to the train station with her daddy after school.

When we were still newly wed and living in Kenya, they had the production going. Joseph and His Amamzing Technicolour Dreamcoat. We’d stopped watching most shows by then but this I just had to see. My husband had also done it at his school, so it would have been nostalgic for both of us.

As I sat and watched, the tears just flowed for so many reasons. Nairobi, Kenya was the first time I knew that Black people (not just a few here and there, but almost an entire cast!) did theatre. It was amazing watching all these Black people singing songs we sang in our very British schools. Just seeing them so energised and hearing those lyrics coming from their lips was emotional. I don’t know how many black people TODAY in South Africa know the works of Webber.

Singing the lyrics as they sang all these songs we’d sung in school, took me back to school. The choir was my safe space. Music always took away emotional and physical pain. It was there too that instead of insults about my looks or body, I was told I could do something well. Very well. So well the choir teacher would tell the first sopranos that I was carrying them and they were flat so I should keep quiet and they must learn to sing the right key. (I can see where I got my absolute distaste of bad singing😩🫣 It’s jarring to my ear. There’s a church that has a very flat woman who leads with a very loud voice. It’s unbearable on top of how many don’t stick to the actual tune which we at our Xhosa churches grew up singing because we sang the notes as they are in the hymn book.) I digress. Beautiful music was my healing place.

I could forget myself and be the person singing the words. I could be Joseph. Betrayed by those who loved him. I could be Joseph, seeing how God allowed the bad to lead to great good. A good better than his past. I could see God better when I sang to Him. Even in normal assembly.

God appears vividly coloured when I sing, just like when I’m reading His word. I can forget the pain I’m in. I can forget that yesterday my ten year old wanted me to go back to bed as the flare began again. I can forget the neck pain, headaches, deep sore in my gum preventing me from eating ok and brushing my teeth (Rinvoq side effects), hip and leg pain when I’m lying here crying over lyrics from decades ago.

I too wish I could have someone “give me my coloured coat, my amazing coloured coat.” (Last line of the song) I just want to be ok. Joseph wanted to be ok. And the God Who eventually led his bones to the promised land, will heal mine one day. But oh, I close my eyes and know the someone far away who is weeping, is me. And maybe Flydah in Kenya, far away. Thank you for reading my heart ramblings and encouraging me.

By the way, I saw THIS version below first when I looked for the song so I could sing along to it. I felt so stupid as I watched. It took me ages to figure out why the lead singer was wearing a colourful ‘dress!’ Ankylosing spondylitis brain fog. Even Ammy quotes “brain fog” at me when the cloud caused by AS messes up by memory or my speech. I love the mix of singers. THIS video is what made me realise how BIG this song is. I truly never knew even though people have acted the entire story. 🤦🏾‍♀️Maybe the blacking out and falling down the stairs knocked some brain cells out.

The First Frisson of Fear

Grace by any other name2 Comments

Haha, I was looking for a picture of a skeleton and this one reminded me of first year speech therapy and audiology. We were each given a human skull to take home or to res to keep reminding ourselves of the bones of the inner ear etc. My husband-to- be thought I was creepy. I didn’t even think about it being human. It was more real cutting open the corpses in the hospital basement. But even then, I just wondered if the corpse I was working on was one donated specifically for us to cut up as some people do (Leaving their body for research or students) or if it was the corpse of an unknown homeless man whose body was brought in for students to mangle learn on. Those were two of the main places the university for corpses from.

Back to why I’m posting today. The chronic issue that gave rise to the name of this blog. I am starting to feel my skeleton and the first frisson of fear has begun. Unlike Enbrel which started working on my AS symptoms after four months, Rinvoq started in the third week. And the difference was much more obvious than with Enbrel – until the flare started last week. But even then, I didn’t have the usual, “God, this is no life. Please kill me,” request.

Until today. In the same way Rinvoq works fast, if you’re just an hour later than normal, your body starts acting up. Now it’s been three doses missed and the cystitis symptoms are still there and instructions from the rheumatologist were clear. “Do NOT resume the Rinvoq until all symptoms are gone.” And they’re not. I still have the pain. And honestly, I wouldn’t want to take it until I am healed. Who would want to change a hopefully easily treatable situation into a potentially kidney function threatening (As if my kidney function needs to get worse as it is), if not life threatening, situation?

So, I wait. But, as I just told my mother in rural Zim who asked how I am, my bones are crying now. I am in extreme pain and the fatigue has returned. Even my sternum is reminding me it exists. My children obviously see it because they kept telling me to go rest when I was tidying their dishes and plates up.

The new fear doesn’t end there with just the fear of an infection that won’t respond to the first antibiotic and will need longer treatment. Remember the ‘many months long’ paronychia when I was on Enbrel? WILL this infection heal soon? But also, what if more infections keep coming and it turns out I can’t keep using Rinvoq because it might kill me, like the way we had to stop using Enbrel? I’d be bereft. This has helped me more than any other attempt.What if the next infection damages more of my lungs? What if the next treatment attempt after having to quit Rinvoq will be like Cosentyx? Useless to me?

As I said, never in my life do I recall having cystitis. I just knew I had it because of my symptoms matching it, not because of experience. The test just confirmed it. By the way, I’m thankful for Intercare that always has appointments available to book online for the following day. I’d also never had a paronychia till Enbrel.

So now, I actually have to pray about these extra possibilities. All along, I’ve been masking up to try avoid those kinds of infection. But as the finger and now my bladder have reminded me, there are infections you can’t prevent. Enemies you can’t predict. Things I don’t think of as threats when I’m praying to not catch a cold or flu. And now my minor blood pressure worries have truly become minor. I guess because I knew that there are anti hypertension medicines but there’s no other way but to stop if I keep getting sick.

And with the improvement I’d started to feel, that’s a big problem. My daughter even asked how I keep making my bones crack when I get up. She thought it was on purpose! Like when people crack their knuckles. I wish!

Ankylosing spondylitis has reminded me who’s boss. It’s still that same incurable, progressive (ie it gets worse or treats you worse as time goes) inflammatory autoimmune disease. As if the leg that’s permanently painfully limping if it has to walk for over two minutes straight or try to exercise wasn’t already reminding me.

Chronically Yours signing off.

The one whose club you don’t want to join and to which if you belong, you wish you could get out of.

And don’t forget my children. My ten year old said she has always remembered my telling them never to play with fire. But, she thought the BLUE flame on our gas stove wasn’t fire. She touched it. It hurt. She was surprised.

She’s turning 11 this year.

As I’ve said. I need many of me to watch them and keep them safe.

My heart sank. At least she’s stopped self harming with needles and scissors. But yes, this life is extremely unpredictable and WORRYING. Their angels are working over time to keep them from permanently leaving this life. She’s promised never to climb up here again.

She can’t ever struggles to keep her promises.

Hmmm

Letting Go

Grace by any other name2 Comments

Years ago! Nine years ago. My oldest girl carrying our newly arrived son, and their sister touching him in curiosity.❤️

My big girl is wearing a skirt I made. It’s the last full item I sewed. (I did sew a few bib sets thereafter that I sold.) After the making of this skirt, sitting had become so painful that even hemming or repairing hems is a nightmare of pain, though I enjoy the actual doing of it. Knitting and sewing gave me peace.

A few years ago, I bought a sewing machine. I told myself that I’d start sewing again once we figured out what was wrong with me and why I could not sit ( or do anything really) without so much pain. I thought we’d find a cure.

That sewing machine is now gone. I gave it away this year. Never used. Still in the box. I don’t know where this disease (AS) will take me and where Rinvoq ( or whatever else will come enxy) will lead. But I do know that I don’t ever want my house to burn down and have things I could have blessed others with, burning with it. Same thing with clothes. Why keep treasure when others need it? I always give away all good quality pre loved clothing as soon as possible. There are children TODAY who need to be covered up. Not tomorrow. Today!

And thus, I let go of my dreams despite the sewing machine not ever having been preloved. I opened the table cloth packaging. Remember, the table cloth I might have blogged about two years ago that I also bought with hope that I’d one day be able to dish out food and sit down on a chair to eat with my family? Why keep it till a time that might never come to fruition?

I’m letting go of SOME dreams, but until I exhaust ALL treatment avenues, I will still hope I can be the mom I used to be. That’s what my children need, more than my homemade skirts.

My Handicapped Disc

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My handicapped disc application process was a nightmare. A mini nightmare, but still one! Like another lady who came after me in the queue, I’d gone to the wrong office first. One three suburbs away. So I limped back to the car and drove (hurts) to the correct department.

Milnerton Traffic Department.

The queue was not for the faint-hearted. I wanted to leave after standing there for so long that it was causing more pain. But what if next time it was longer? I’ve seen it longer and waited in much longer ones. So I waited.

Finally got in, was sent to “Enquiries” by the guard, only for the lady there to tell me the ONE lady who processes applications wasn’t there! I could “wait 10, 20 minutes or leave and come back later.” Just one trip home would take that long! And I’d be hurting myself even more and wasting fuel. So I opted to wait.

I went and told a lady who’d come maybe five people after me. I’d overheard her asking the guard the same question I’d asked, and telling people on the phone that she was there waiting to apply for her dad’s disc. I told her I was suspicious. 10, 20 minutes is one thing, why also the option to leave? Was it really going to only be 10, 20 minutes? She went to the back to ask what in the world they meant, making us wait so long? She came back and told me she was leaving and returning later and I could too, as the ONE lady who does our applications was on lunch break.

I decided to go sit in the car instead of waiting there in that very busy department unable to be comfortable in my N95 face mask.

Waited around 30 minutes and went back in and the ONE lady was called by the “Enquiries” lady. Two ID photos, R100 in cash (No card payments) and a form later, I had my disc. While waiting, I realised that if they granted me the disc, I’d have another reason to be grateful.

It really made life easier when a hospital guard at the gate told me I could park in the “Moms and tots” parking bay recently. I don’t view her and her twin as babies so never had before. But with her weight, with getting her out and into the car seat, with trying to convince her to walk in, it’s better the shorter the distance we have to try convince her not to run away.

So, I got it. My application was convincing. (I fill in a section, send it to my doctor to fill in the rest. Receive it and take it in.) Bittersweet-for those not subscribed to my YouTube channel so won’t see the video I posted. Bittersweet. I don’t know if my hips will ever be free moving ever again. The disease itself only progresses-gets worse. Treatment-when the correct one is found-slows it. So yes, though it was hard reading the form where my rheumatologist had written that “Ankylosing spondylitis is a degenerative disease. No recovery,” it was harder holding the disc in my hand. I applied because I need it. The pain, stiffness, limping caused just by walking from the car into the pharmacy is something you can’t ignore. Add waiting and you’re in trouble.

Also, my lungs… Just carrying two packs of diapers up the stairs at Bayside Mall and to the car makes me short of breath. Same with carting just one bag of groceries to the car at Table View Shopping Centre. It’s as if I was doing a slow run by the time I get to the car.

But, that wasn’t my plan. My plan was to be a healthy mother who can take all her children who need therapy, to therapy and do their home exercises! I was to be able to teach painlessly, instead of wishing I wasn’t teaching at all, instead of being happy when our very short (ADHD) class time ends.

The behavioural optometrist emailed to ask how we’ve been. She misses the children. She means it. She always said they brightened her day. The last time I’d gotten in touch was when Amarissa had knee surgery so couldn’t return to therapy yet. (Visual perception disorders are about the entire brain. So there’s lots of stuff you’d also be doing in OT. Movement, crawling nag, bear walking…) I explained to her that I’m much worse than I was the last time I’d taken my middle two to therapy, and already back then, I would get home and be in extreme pain. Now, things are much worse.

She’s based in Durbanville. There are no behavioural optometrists in our area. My oldest daughter’s Biology practical exams were in Durbanville in May. By then, driving home even after just an hour’s wait- I was in so much pain, grunting in agony, that Eliora would tell me, “Don’t worry, mom…Almost there. We’re almost home.”

Slowly, thankfully slowly, struggling more with breathing only at age 44!? Disabling pain, decreasing mobility, worsening limping so early?

Heavier challenges at home, bigger struggles as a mother?

I need the disc. But it means facing the reality of no cure and for now, not even a treatment that helps relieve me of the enthesitis and bone pain. Every limp is shooting pain in my SI joint. Stiffness in my hip. (Is it fusing? Why are my AS exercises becoming more impossible for the right hip on top of the decreasing spine mobility?)

Worse. Harder. Sadder.

No wonder it was bittersweet, holding that disc in my hand.

Call Me “The God Mother”

Grace by any other name2 Comments

She’s just performed a Lazarus on her older siblings.

So, I’d noticed and smiled when every time I take a walk with the little ones-not very common or daily because of pain and fatigue-my Nālo always mentions God. We walk past a church with a cross on it, she will exclaim, “Jesus died on the cross for us! He loves us!” We walk on grass, walk past flowers and trees, “God created these!” She will yell. Always talks enthusiastically about God, always. I thought it was cute.

Two days ago, my nine year old, Amarissa, heard her and commented, “I wonder why when you walk with us, she always talks about God and Jesus! Only when YOU come!”

Then I thought it was cute and funny!

Call me The God Mother. That’s Who she thinks about when she thinks of me!

And that is also, “perfectly ok!”🥰😃

I also loved this. My girl is so full of contradictions. The other day during a rough episode, she pulled my hair so hard that I felt some pulling out my scalp.

But she also is so calm when she’s calm. She came and decided to get her babies and toys and comforter to lie down on the sofa. Randomly! When I got home from my parking disc errand, I found her there. I got close to say hello and she ever so gently took my hand and pushed me away.

At least ONE of us is able to say, “Give me space!” Mom guilt doesn’t allow me when I want it!

Last night, I was alone with the twins while the teens went to look for gas for our stove and heaters as all our spare gas canisters are empty. None to be found in our area. The twins both sleep in diapers (one is always in a diaper) and a sleep sack, so I got the fright of my life when I heard sudden loud clicking and then flushing. Our little Pharaoh had unzipped herself, and used the loo and out her diaper on perfectly! While I was checking and confirming, her dad phoned so I asked if she wanted to talk to him. (Yes, I’m more ‘single’ mom than ‘married and husband home every evening’ mom than I thought I’d be.)

She smiled so big and said, “How are you..? I’m so happy! I love you! I love you SOOOOO much! And..I like the bread mommy just gave me and..and.I like my Pharaoh hat!” She finished quickly and with many giggles 🤣🥰 Motherhood has sweet, funny little moments.

(Been up since 1am. It’s 3:48am. Might as well blog while hoping the pain tablets start working. As I said in a video I’m yet to post, while I share the sweet mommy moments, AS undergirds every single moment of my stupid life. And so…I got my handicapped/disabled parking disc yesterday. I talk about my feelings and those of my friend who commanded me 😉 not to mention her on YouTube, in the video so I won’t share it here. Suffice to say, I’d prefer many more of the moments above and fewer AS intrusions. I’ve paid for my next injection which I’m due to take on the 6th, waiting to hear how I’ll receive it because with AICF funding it, they have an account with the Biologics Department of Dis Chem (my pharmacy). They’re separate to my normal walk-in pharmacy.

Last month, I paid the R5400 I must pay for this biologic each month, before finding out three days later, that AICF had agreed to fund R1800 of the R5400, so they sent the amount to the local pharmacy I’d ordered my first injection from and I had to go collect the refund then to organise the next injections, email the Biologics people directly from now till October when Discovery stops partially funding the other part of the total monthly R8128.49 cost of the injection. AICF only pays their amount for the duration your medical aid has agreed to fund for. Not sure why, given when they stop funding we’ll have a terrible cost. Bye, bye house fund! Goodbye special needs school fees.

Also not sure how the injection will get to me. Direct delivery? Or sent to my local pharmacy? I asked when I sent in the email to place my order, but was only told to pay then they’d send it.. somewhere. I hate it when people don’t respond to a direct question. This IS my life. My money. My health so surely I deserve the courtesy of knowing how this works?

Oh well!

I can now park closer to store entrances, closer to my pharmacy entrance, hospital -very useful with my not very controllable, and very heavy non-talker, and closer to any other place that has disabled parking. Less painful limping to endure. Less breathlessness as I carry even just two packs of diapers from the store to the car. Better.

And so, the God Mother will leave this there. Sweet moments and mystery biologic delivery, and the positive side of the parking disc.

Good morning and signing off! Yesterday I slept from 5am to 6am after waking at 1:20am but I’d ended up taking a sleeping tablet at 4am. I guess I’ll have to try that. Cos the pain is just not going.)

Thankful for the happy moments that give me brief breaks from feeling. The giggles really help in that moment.

Grateful God Mother REALLY signing off now.

Perfectly Ok

Grace by any other name1 Comment

I always feared trying to educate small ones of differing grades. That was before I knew the extra educational needs and learning disabilities that would befall us.

What is perfect in the day of a sick mother of disabled children?

Whatever it is, it is impossible to attain. So, I will live with “perfectly ok.” Today, was perfectly ok. I limped to go collect our hope in two bottles and went to the bank and then wanted to crawl home and stay in bed.

But it was perfectly ok that I couldn’t. It’s perfectly ok that I feel tired. It’s not only the AS fatigue, it’s also the good kind of tired from USING my body, not only from constant pain and fighting inflammation. I like that kind of tired, even as it contends with my body’s innate fatigue that I wake up with and fight against daily.

It was good be busy. I love being busy. I love doing. And so, when I finally lay down so I could plan the next Bible story segment and learn the memory verse so I could make up a song for the children, it was perfectly ok that that didn’t happen.

Instead, just as I dragged my laptop across the bed and put my feet on my hot water bottle, my littles came in, my four year old leading them. “Can we come lie down in bed with you?”

Well, there went the silence and rest I’d been hoping for! Instead, I got some cuddle time, some Bible video time in bed and random conversation with my littles. It’s a fair trade, right? After all, the most important thing is to help them develop holistically, and that definitely includes emotionally, doesn’t it.

I didn’t do ANY of the school work I’d planned. I’d planned it before I knew I’d need an hour and a half to go collect my daughter’s new med, the Strattera. My hope in a bottle. Last week, during our crazy hospital stay, I told the psychiatrist how my non very talkative angel can’t focus. I try show her pictures, she isn’t interested. We tried sign, she didn’t look long enough to learn the correct sign for the word meant. We speak, she doesn’t copy. We try the iPad, she only wants one specific app- Starfall- and only one specific session. AND she is all over the place anyway, bouncy and busy. Never sitting still.

The psychiatrist asked if we’d tried any ADHD meds. I told her that (based on the extremely judgmental pharmacist who castigated me once when collecting my son’s Ritalin) I’d thought I have to wait till she is six years old for an ADHD assessment, and even with age six, the pharmacist was angry at me and all the professionals who agreed that my boy who was six years old at the time (and our other girl) has ADHD. I wish he could live my life. I wish he could try learn with multiple thoughts buzzing in his head. I wish he could try memorise simple things with other things intruding and stopping him. Seriously, I asked my nine year old what one plus one is and she said two. I congratulated her and she said she’d been guessing.

After all these years, not much stays in the memory despite different learning methods and just rote learning, even with medication. Imagine without!

So, psychiatrist said Strattera should take 6-8 weeks to start working – if it does. It’s generally also sued for ADHD but nobody has ever suggested it to us. The psychiatrist hopes that then her head will be calmer and able to take in more, to learn. My nine year old asked if it would make her talk.

That requires prayer and at this point, a miracle. I told her that what I want is for our girl to learn to communicate, whichever format that may be in. We will learn with her. We just want her to be able to learn.

And so, we have two (out of three- the pharmacy only had two and our usual one close by had zero) bottles of hope. Our hope in a bottle. We need a huge dose for all of us! Today, it’s about my non l-talking angel who moved our hands to get what she wants except for the words, “Cereal, juice, peanuts and raisins, ice lolly..” She certainly has her priorities sorted.😉

If we look at our problems individually, we will faint. Sleepless nights of pain, my right hip seems to be fusing. It’s not behaving at all and it’s scaring me. My limping has increased even according to my trusty Apple Watch. To know I have such precious and so young (intellectually forever young and struggling) is daunting. I can’t do it NOW, how in the world will I do it next year?

And so, today I focus on our hope in a bottle. And I focus- for this blog post because sadly, life isn’t like that, I can’t compartmentalism all the things and problems – on the times she is happy. My daughter’s anesthetist asked why I was limping. I explained that I have AS. His response, “Please tell me Amarissa also doesn’t have it.” Then he did an impromptu check that I still have neck mobility after telling me that AS is an anesthetist’s nightmare. Yeah, I can’t forget the people who can no longer have surgery under general anesthesia because they can’t ve ventilated due to the curve they are stuck with. I also can’t forget the man who thought he was fine and when they inserted the breathing tube, it turned out bone had grown INWARDS into his throat. The bone broke off and unbeknownst to the theatre staff, he choked on the bone as it occluded his airway.

AS is a beast. AS with special little ones is hectic. I changed our angel’s diaper and wanted to cry. How will I do this next year? And the year after? Will she be able to comprehend if I tell her to kneel so I can wipe from that position rather than on her back? She doesn’t comprehend much now… Or, doesn’t react as one who does. “Give to Ella” means nothing. How will this work? And the siblings who also need lots of work? How will we do this?

I don’t know how. But we will. We have no choice. Somehow, we will keep going, even when we don’t feel perfectly ok at all.

And though we didn’t do any of the book work I’d planned, we did lots of physical and occupational therapy home exercises. We were happy. We laughed, we cried. I did laundry….We did stuff. And didn’t I say I like doing? What we managed, was perfectly ok.

Also, I got validation. I researched lots and read books by qualified doctors and researchers. I buy the supplements…The psychiatrist if we’ve tried magnesium, yes. Zinc, yes. All of them, we are doing. Not only for our non speaker, but for our ADHD girl with learning disorders who landed us in hospital last week. Basically, I’m doing everything that I can. The impossible is not in my hands. I need to learn to be perfectly ok with that.

She suggested we take our girl for an educational psych assessment. We’ve done two already in her life. I sent the report and our vision therapy report. Again, validation. I just wish I could ram into my thick skull the knowledge that I am not failing my children. It’s hard to believe you’re doing perfectly ok when the majority of your six are struggling so much. But we must.

Give ourselves the grace we would extend to others. Start with yourself first.

No News!?

Grace by any other name3 Comments

Seriously?? April, in April we applied for a change in medication. It’s now June. Last week I got a reply from Diacovery saying they’d partially pay till October. And I wrote to the rheumy’s office and also asked a question. I asked if we shouldn’t move my appointment further out given we won’t have had four months on the new med by the time I see the rheumy. Said appointment being to see how or IF it’s working.

There’s been dead silence. Every hour of silence feels like a day. And I don’t want to ask again because you know how that goes- you get rapped on the knuckles for having the audacity to ask what the next step is regarding your declining health.

This is apparently a common problem. I’ve seen folk in the States talking about how when they email about a flare, they get seen -regarding the flare-SIX MONTHS after the flare began. Or they just don’t get the level of communication they deserve. It’s not like I’m not willing to pay for an email response. But there’s nothing…Just silence. But hey, I’ll have to pay immediately for my consultation! And it’s a lot of money. A lot.

This really stinks.

So let’s end on a sweet note. My talkative four year old loves life and is very active and energetic and crazy and sweet. I was about to add something sad about an autistic trait but I won’t. Let me see… She loves wearing a pillowcase on her head and being Pharaoh.

There.