Tag: Ankylosing spondylitis

WHAT Sabbath?

Grace by any other name1 Comment

I used to dislike hearing people say, “Happy Sabbath” when greeting me at church. I’m not worshipping for happiness, to feel good, but for blessings that will help me become good, holy, pure in God’s eyes. So I’ve always deliberately said, “Blessed Sabbath,” or, “I hope you will have a blessed Sabbath.”

Nothing strips you if the FEELING of being blessed as pain. Emotional, physical, both types. If you aren’t resting from negative experiences, you don’t feel like it is a Sabbath. Sabbath is meant to bring us closer to God and further away from the earth’s charms and harms!

But not when the devil has your health and your children firmly in his grip. You feel as harried as you would on any other day. Yes, you might not be “doing school,” but you’re still teaching. And AS, ADHD, Autism and intellectual impairment and everything else, have no day of rest.

And so, a day which began with some hope has not ended yet *gulp* , but has come with some hard moments. I’ve been warning my ten year old, our helper has warned her, but still, despite us telling her to stop touching and catching bees, she got stung yesterday. And her finger is still sore and swollen and red at the tip. Normal, but it’s the fact that she caused it that makes it worse. I don’t like worrying about my children. It takes away my peace. And knowing it was by choice sadly doesn’t make me STOP worrying or being sad about her (according to Google) few days of suffering.

The teens have been here for almost a week now. I had THOUGHT I’d be able to take the children to nature on Sabbath last week but my body said no. And it’s still saying no. So I told them they could go wherever they’d like and so it was, they went to the aquarium.

After doing some Bible reading, I felt in a hurry. We took a short walk. And that too is a big deal. We used to take walks in the evenings when my husband is around when the children were calm- twins in bed and middle two reading or playing calmly. But now, there are no teens to watch over them in the evenings or on weekends anymore so we’ve been stuck at home. I could walk alone, but I feel like my limp when alone draws too much attention to me and I feel self conscious. And it’s not like it’s a power walk for exercise. Just a short gentle stroll. A third of the distance I could walk two years ago.😐

Back to the point. I was feeling rushed. We just had a few moments of ‘peace’ till the group returned. I came back home and settled in, trying to finish as much of their nature story as I could. But they arrived before I had finished.

And that is the crux of the matter. Two hours isn’t enough to give true rest. Because of their peculiarities, one twin pulling me when I sit with everyone, the other not focusing well when I’m teaching face to face, I have to then record their videos. Edit them, find engaging pictures. And then put it all together. So I’m sitting.

Pain.

They returned from the aquarium. And chaos started. I went to go warm up lunch and dish it out and my girl began, “Car. Car. Kayi. Kayi.” (Don’t know how the vowels change.) Her dad always says we should say no. After all, they’d gone all the way to the CBD to the aquarium, it’s enough. Nope, not for her.

So I went to hide at his urging. But the girl wanted her car ride come hell or night water. And the loud tears began.

Ten minutes later, I gave up. My driving leg has been giving me a lot of trouble. But I couldn’t handle the fact that SHE was unhappy, and everyone (perhaps excluding her father who was saying no to the car ride) else also had to be party to it. I needed to make things better for the other children.

So I took her for her drive.

Calm restored.

But not my own.

For just an hour after that, I found a mess that didn’t make sense at first. Till they told me they’d been melting crayons with hot water. I know ADHDers are creative. But at this point, I wish all their creativity was in a positive direction. Not something resulting in MORE work like their little sister’s brand of autism results in. How will I even begin to clean this?

And this is the crux of the problem. My body doesn’t allow me to be watching over them wherever they go. And I have to parent and teach, feed and launder. I can’t follow them outside to ensure they don’t get stung by bees. I can’t drive all the time. What happens when my joint on that burning bad right leg is fully fused? Or I’ve caught an infection I don’t want them to catch so don’t want to sit in a car with them? What happens when I’m in an even worse AS state and can’t drive her anywhere? How will she and all of us handle her screams and cries? I can’t be hovering over them to make sure they don’t melt crayons. I can’t do it all.

And because I can’t do it all, lots happens that definitely does not feel like a blessing. That short break I got when they went to the aquarium didn’t feel like one at all. Because I was still giving my body to my children. Not by choice, but because their special needs demand I record so they can learn.

I feel like the strain is aging me.

Today is definitely not FEELING happy nor blessed. It’s stressful, PAINFUL and sad. My pain levels are increasing. Even at night I dreamt I had fused up and was planning surgery to break the bones and fuse them in a better position.

Nevertheless, I keep on. What else can I do?

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.

Stolen Money

Grace by any other name1 Comment

I am desperately trying to find educational, or more importantly, therapeutic centres for my children. Places where they can wear what they need – instead of being bound to a uniform of specific lengths and material.

I am desperately trying to figure out how in the world next year will look. Paying for two university students is no joke. We have no clue how that will work. Paying their mortgage for the townhouse we bought them in a secure complex- how will that work out from our budget?

Oh. No. Let’s go back.

We haven’t bought an apartment. We tried to buy scammers stole our deposit!

The ‘estate agent’ sent through the correct offer to purchase documents showing that the seller had signed after we signed. And sent bank details for the documents.

Only the next day when she asked whether the deposit had indeed been paid did my husband notice – when she again sent proof that she had sent the bank details so didn’t understand why we hadn’t paid-that her email address was not correct anymore and neither were ours. The thieves had swopped a letter here and there so it looked ok at face value. But it wasn’t ok. The money had gone into their account.

This was last week Thursday night and we are still waiting to find out if we can get our money back. He went to sign an affidavit with the police. Then got a case number and the agents have done their portion and have spoken to officers on their end. And now, we wait. The bank knows.

So let’s PRETEND the purchase has happened. How will we pay their mortgage, our mortgage, their pocket money, grocery, laundry soap, crockery, cutlery, etc etc , internet, university fees, car repayment, car insurance (We’d hoped they’d each have a car but they’ll have to share) and all my medical costs, the kids’ medical costs, anything that comes out of the blue and our own fuel as well as the teens’ fuel costs and all other costs?

And that is why I am stuck.

I can’t afford to hire a proper au pair. Those people charge an arm and a leg. Might as well be sending two children to an expensive learning centre- something we already can’t do now, even before the teens’ leave. I can’t pay rent for someone to live close by and also give them a salary to be my assistant teacher, to be my children’s supervisor and watcher and nappy changer and bather. And I can’t build a granny flat in the yard because that too is too expensive. We would have little to eat, and nothing left for my medical needs.

I am stuck.

So, so stuck.

The only thing I can do is cry out to God. I’m in abdominal discomfort from the colonoscopy and gastroscopy. And I’m tired. So, so tired. The screaming, the pushing, the pulling, the soiled toilet seats soiled by an almost ten year old girl, the screaming, the nagging, the sentences I must reply to even though I know they won’t even make any sense so I won’t be able to answer them anyway. The constant busy-ness, the planning, the recording, the sitting, the pain from sitting and recording, the editing, the lack of time to get everything done in 24 hours and still sleep. The pain, the limping, the heartache at each child’s specific problems, the wondering, the anxiety, not knowing what to aim for, planning for more assessments, appointments, traveling, fuel, knee pain, hip pain, fatigue just from folding a t-shirt, arms too tired to fold more. The ironing, the picking up bowls, more bowls, cups, cups inside, cups outside, the laundry, more laundry, bowls in the garage, bowls on the grass, spoons in the drain, toys on the trampoline, socks missing partners amongst the flowers, sharp knives mysteriously found outside, crying, bowls on beds, split raisins, spiky milk, hidden old food, money food hidden in my car, pulling, too much eating, worrying that our non speaker will die from obesity related illnesses, fear that she will kill me one day, hating that I can’t take all the children out because she spoils their joy, hating that I can’t take any children out anyway because of my body.

Toilet. Can’t use the toilet in peace. Teen son comes to ask. Talking twin daughter bangs and screams. Shouts and cries. Non-talker screams and cries and if I dare forget to lock and I’m in there to use the loo and make a call in the relative quiet of the bathroom, she comes in, pulling me, pushing me, then giving up and sitting (very heavily) on me..on the loo. Open the door, children waiting and waiting for me. No peace. Night means research, planning, preparing, editing, recording no, reading aloud, searching for extra to add…

Hoping..hoping the children get back safely from their nature trip. Sad. Unseen. I have nobody here to speak to, cry with, plan with, seek help with, hug me, comfort me, pray for me, wish things were better with. I have to be strong. I’m the only mother, the only parent they have most of the time.

I speak out my fear of the future to an adult in the house . “They won’t be like that.” I get told And I think, “ They are already like that now! But I’m the only one who lives it day after day after morning after afternoon after evening. Can anybody hear me!??”

I am sad.

But I am never going to be broken.

The same woman who sent this message below when I cried out into the ether, is one who too will never allow herself to be broken by any human out there.

I may never get any rest while living on this earth. But I know who will be extremely happy that heaven has come at last and I can finally have the rest I never received on earth. One who will rejoice with me and for me. One who feels for me with all her heart and soul.

I am sad. But I am not sad alone.

I am thankful for technology. And I know that unlike many who make empty promises, this message writer would deliver, because even without making any promise, she just gave. Freely, willingly, of the VERY little she and her precious family had.

I’ve had people not only love me, hear me, but also care for me, sacrifice for me. Cook for me, walk at nine o’clock night to go find something, anything that would stop the violent post-op vomiting that wasn’t stopping.

I used to ask God why He let me give so much- time, energy, prayer, thought, care, worry, money, my own clothes off my own back, food, blankets- yet never receive the same love. What was wrong with me that people could use but never love?

Nothing.

He was just waiting for a time when I would need it the most, for a time I’d appreciate it the most, when words would be just as heartfelt as actions. That time is now. I am on my knees. But I’m not alone.

Video School!

Grace by any other name1 Comment
Jumping with excitement over glitter glue!!

But first, let me share a bit about school work. Someone commented so positively about how committed (or something like that) I am to a project I’m currently doing on YouTube (Studying the book Adventist Home) despite everything else I’m doing.

It meant a LOT!

So, here’s a snippet. My PDA daughter is VERY hard to teach. Interesting..She is truly a version of her mostly non-speaking twin! She does what she does, but differently. Both girl won’t sit down and discuss or be led in discussion or even naming items in a book or on a screen. I can’t teach like I do my other children. And my other children are already harder to teach than my first children. At their age, I could plonk a textbook in front of them, cook while they answer and then go through the answers with them. They were self teaching as soon as they could read. And they read at age four and three. We could do crafts with ease. Snakes looked like snakes. They understood verbal instructions and had hands that cooperated with their brains and with my instructions.

Today, it’s difficult. So difficult. I frequently regret doing crafts and these aren’t even difficult crafts. I do much of the work myself and even then, they can’t stick things down well. They don’t know how to place ladybug legs … And it’s all different children with different problems and only one of me.

Can you tell I’m burning out??

So, back to my ‘newly diagnosed but long known to us as our fourth autistic’ four year old. She had occupational therapy this week! The first time ever!! Some celebrate “First day at school,” I celebrate being able to attend therapy. Something my most desperately in need daughter can’t yet do. She was excited but nervous.

She had had a headband on. When it was time to go, she asked to wear a blanket on her head, held in place by the headband. And this is an adult sized blanket she was talking about so I said no. She did the next best thing. Took a hat, put it on, put the headband on the hat, took a teddy and took the blanket. Armed and ready for war!

Thankfully, she enjoyed it. She enjoyed being “asked questions and playin’ a lil bit.” So, we are set for the next session.

As for home education? I’m back in the thick of hectic vision therapy exercises. Too many, people. I’m not well enough nor have enough time per day. So I’m doing something daily. Just nitpicking every single exercise. But, such is life. My girl can’t sit still when I’m talking, doesn’t listen, tells me she’s bored…

So, given how well she concentrates when watching my Bible story videos, and how well she recalls things I say, I decided to look at the upcoming topic, record myself (try finding peace and quiet with six children!), edit it, add visuals to explain things that might be new to her, add movement breaks either led by me or by online videos I edit into the video, THEN teach via the TV. Sometimes, I add songs. So I first have to find relevant songs -unlike the Bible videos where all the scripture tunes are made up by me- and then learn them and then find the karaoke version and sing along.

It’s a lot. And that’s just one subject.

But it’s rewarding. The peace and concentration is amazing. And the middle two get to learn with her as we watch.

I also did the below for them, which they’ve watched a few times. This was just a general education video I made up for them, not part of Neilo’s Science curriculum.

My title. I’ve had tummy troubles. Began with pain last week and has ended (thus far) with a case of the runs. My rheumatologist wants to be prudent so I am suddenly booked for a colonoscopy and gastroscopy. Something I didn’t want any time soon! The pharmacist said there’s a stomach virus going round. Given how I ended up in hospital for the vomiting one, this might just be the current bug and nothing worse. I hope it’s not a Coesntyx side effect. I want to give Cosentyx a shot at working. But it’s best to be prudent. If my NSAID or Cosentyx has caused an internal problem, better to figure it out soon.

And so, as the evening wore on today. and I felt guilty that I hadn’t done therapy, I called my middle two and made them do one each. I laughed when my son then asked if I wanted to see something he’d made. I replied, “No.”

This was unusual and never happened before! They both froze and said, “Huh??”

It didn’t compute.

“Mom always cares about what we’ve done.”

I giggled at them and then allowed my boy to surprise me with his “robot.”

You can definitely see what it is without my having told you what be created. 😉Right?

I love how proud he was of it. May they both ever be sure of themselves.

We Did It!

Grace by any other name1 Comment

All of us did it! Every sister who asked almost every single day how the day went, if there was any improvement in the children’s challenging behaviour, if I was able to sleep (No), if the twins slept (We’ve double diapered Reo and she’s been quiet. And so, her sister has also stayed asleep.) Plus she’s on meds that help with sleep. Oh yes, that.

Let’s get to that first. Last Monday, I took Twin A, Naynay aka Neilo aka Oreneile for an assessment. I’d filled in the Connor’s questionnaire as her teacher and my husband did the “parent” one. I also did the M-Chat assessment. I added all the observations of autistic behaviour I’ve made over the years, and emphasised the current challenges- I can’t teach because she interrupts me, she thinks she’s also the teacher and takes over, her violence that comes extremely unexpectedly when nobody is even doing anything that should cause harm or she has not asked for anything we have denied… Her irregular speech errors, “What are you going?” instead of, “ Where are you going?” And, “Where you went?” And, “What are you doing a?” Or, “What are you doing the?”

The extreme hyperactivity and inability to focus. Insisting on doing formal school work (We believe in delayed academics), but saying the work is boring and moving pages ahead, or doing her own thing like writing letters on a page teaching her letter recognition when nobody told her to. Her taking over and teaching ME… And her interrupting her siblings as they learn.

I mentioned the excessive role playing. She don’t play pretend, she becomes a character she has learnt about and is that person in her head. “I don’t want to wear a top. Pharaoh doesn’t wear one!”

That day, she decided she was an elephant. I didn’t even try talk her out of it. It was (is) part of her constellation of symptoms, after all! And after her head was messed, weight taken (She hasn’t ever seen him. She doesn’t get doctor sick, she goes big/breaking her elbow jumping on her bed and then her arm the following test jumping on a trampoline and falling off both times.) She has horribly changing moods-laying out and hurting others for no discernible reason after having just laughed with them. Very sudden and distressing.

I also mentioned her prodigious memory. She had the memory of an elephant!! Can be so caring. She kisses my back and prays for me. She tells me to rest. She tells me to lock my bedroom door so her more violent sister doesn’t come pull me everywhere and anywhere, stacking me when I can’t give her what she wants.

After an hour observation, talking to her, talking to me, witnessing her busy-ness and sudden requests to wash her very clean hands, everything showed that she indeed she has autism, ADHD, extreme pathological avoidance. I was shaken by the word ‘extreme.’ I guess in so used to everything being too much that I didn’t realise it really was too much! Every single child is on the extreme when it comes to behavioral challenges that leave me so tired and alone that I b never paused to think, “Why is out PDA so much worse than it could be?” It’s more the older two who exasperate me because I know things could be better, they would be helpful if they were neurotypical and their actual age developmentally. Why suck ink and spread it everywhere on the floor, on your vest… Why throw clothes out the window and make awful messes every single hour?? Why resist so much? Why the screaming? Why does their sister pull only me so much and.. and why can’t I ever REST???”

We’ve begun on a very small dose of ADHD meds and mood stabilizer which also happens to boost sleep. Both girls are on melatonin, SleepVance but we were still struggling. Waking up for HOURS and being loud about it.😆 She’s also on allergy meds as us her minimal talking twin and minimal talker is on another med that send to help with sleep as well. We shall see how to shift things around. So far, no positive change in her behavior.

Back to us! We did it! Yesterday was injection day again. My regular commenter who once sent money even keeps track of the days as the injection day draws in. I’m the one sticking the needle in, but they are the ones who show care and concern every single day. The one who listens to my cries when in do open up. We did it! Four straight months-NO STOPPING!!! )With Enbrel I never even reached two months!

I don’t know yet if it’s starting to work. This just could be the end of a flare and it will become extremely bad again. The fatigue (extreme exhaustion and wanting to lie down began again yesterday after a few days of my having to remind myself to calm down because doing too much would trigger n more pain the next day.) But.. I had a better week where I didn’t beg to die and pain meds actually did reduce the pain a bit. But since yesterday morning, that has changed. Still not bad enough to wish to die though, so I’m pretty chuffed for now. Praying I get better. We got to a whole four months! Thank God for that privilege! I hope this is the treatment that shows this all down and helps my lungs and kidneys too.🙏🏾❤️

Prompted by a comment

Grace by any other name1 Comment

How are things going with my not very predictable, and very physical daughter? This post was prompted by a father of an autistic child who commented under the post in which I spoke snot my daughter hitting me and hurting me.

Sometimes good, sometimes bad. She has no real texture she prefers anymore. She will eat porridge-y Pronutro just fine, and oats. And sometimes..not. Today was one of those “Not oats” days. She came into the house, saw the oats on their table and came storming to the kitchen yelling angrily. I knew what that meant. This time poor Micaiah who happened to come into the kitchen got caught in the crossfire for the first time (in my presence. ) I didn’t know how he’d react when I was telling her to be kind so didn’t even have a chance to warn him to rather stay away instead of getting close. But, it ended ok. Well, it ended ok for him. He left and then when I replaced the oats with original flavour Pronutro-which she keeps gesturing for-she knocked the bowl out my hand and cereal went flying.

I’m sorry the camera glitches so you can’t see it all.

This is what life is like here. Not ALL days, but MANY days. I will need someone to be nanny who understands the unpredictability but will remain calm under fire. I think of a baby who was hired by a lady in a South African homeschool group. She took a month holiday and went home and they had a sub. She wrote to tell the mom that she misses her autistic son who is so loving despite how often he hits her. I’ll need someone like that unless I miraculously find a very affordable therapeutic centre for her. If we lived somewhere like in the States, I’d definitely have an aide for her and send her to one of their special schools. But, I’m here, not there. And we have nothing here. The government only even starts putting our children on their two year plus special school waiting list after your child turns seven! AFTER. And the waiting list is long! Can even be longer than two years. It’s BAD. I really don’t know what to do and am constantly stressed to the max. I’m struggling.

Then we come to the middle two. I’m meant to brush their teeth. And I’m starting to struggle there too. Just folding laundry has been tiring and difficult. My arms have been giving up on me and feeling strain. This week, it’s gotten even worse. I can’t even fold ONE SHEET! I have to put it down half way through the process. One sheet! I was telling my husband that I wish he could feel what I’m feeling. I wish everyone who expects too much of me could feel what I’m feeling too.

I really DO need to stop working.

It became evident that what I’ve been wanting to do is truly necessary (finding them educational and therapeutic external centers) when I couldn’t even brush one child’s teeth without stopping in pain. One set of teeth! But my arms got tired and were extremely sore. Just brushing my son’s teeth so I had to stop and rest a while. What kind of a life is that? Thats the fatigue we mean. It stops us moving. It makes us wonder if we won’t collapse. It is overwhelming.

I need a second mother for my children. A kind, honest, gentle, able to drive, patient, mother to teach. I don’t think they make others like me. I haven’t even met anyone who doesn’t lose their temper at their own children or relatives. How much more when dealing with mine?

Clothes and shoes constantly left outside overnight to get rained on, or for heavy dew to fall on. Socks getting lost by my mine year old daughter. Underwear thrown out the window by one of the middle two. Daughter still making holes in her clothes. Eight year old throwing food down the toilet. Both extremely easily distracted. I’ll tell my son to go wash his face and he will stop to ask me why babies use pacifiers instead of doing so. Then he will forget I ever told him to go. Or my daughter will go get undressed but you’ll find her sitting down with only one sleeve off, reading a book.

I need someone like Job.

I need them NOW. So yes, it’s been up and down. I’ve managed to divert some anger and get my unpredictable girl her to be less violent. I’ve verbalised her feelings but told her straight after that we are kind and gentle and hug each other, we don’t push. Sometimes she hears and then squeezes me for a hug. Sometimes not.

Homeschooling while terrible unwell is another level of torture. I can’t even finish the next day’s lesson and therapy planning as I’m so in pain by 20:30. Hoping for a breakthrough. And a break.

In the meantime, I grasp and clutch to myself every comedic moment and every insane second. Like my four year daughter who only partially listens when I’m teaching -doing what I tell her, but also planning her own thing. Above, she decided on her own that while I’m reading to her, she’d suddenly draw two C’s. And she did. I’ve never had a student like her before. She marches to the beat of her own drum in every single area of her life. It’s funny. It’s tiring. It’s frustrating when her drum beat is out of sync with the symphony I’m trying to conduct. When she wants to do something totally out of line with what she’s meant to do. And she does most of it, with a smile and easy confidence that her wish is not disobedient nor distracting.. and never negative. So what if she can’t say without stopping to want a very specific book we can’t find and she won’t eat until we find it and put it next to her? So what if she sometimes even coughs and splutters a because she’s chewing and singing at the same time so some food goes down the wrong pipe? She will be warned by me. But she continues and then with watery eyes say, “Oh, I’m choking!” 😩🫣Her not very talkative sister does the same too. She will jump and spin with food in her mouth and sometimes cough and splutter when the food goes down the wrong pipe. I don’t know which is worse! Their extreme activity instead of eating- wondering up and down and going around to find toys and books. Or the middle two and how they will take an hour and still not finish a small bowl of food. And it’s not because of the ADHD meds that reduce appetite. They do that even without the meds. To feed them less would be to under feed them. But to make them sit for three hours would mean I don’t get time to teach. So I end up telling them stop and learn then eat again after a short school lesson.

Told you I need a breakthrough.. and a break. The mind can only take so much constant stress before it breaks. And that’s a mind in a healthy body. Even healthy parents of even one neurodivergent child can’t cope if the child is challenging. And I understand it. I need a break. We all need respite. We all need hope and help.

What’s a mother who can’t mother?

Grace by any other nameLeave a comment
“Mommy, I’m her baby!”
I played this purely for the bird☺️

The rheumatologist believes it’s high time I hang up my gloves and stop teaching.

The rheumatologist is VERY worried. I came this close to crying because she kept exclaiming and saying she’s so sorry and it just almost overwhelmed me. I had gotten up when she came in to call me, telling her, “ I’m surging!” when she asked how I am, but the long trip to her area, and a long wait meant that when I stood, my leg screamed out and I couldn’t stand properly, couldn’t walk properly.

“Oh!! What!? When did this start?? You’re not ok!”

I told her, “Honestly, I’m not ok at all. It’s been bad.”

I told her it’s been at least a month now. A month of horror. She didn’t even finish the examination because my legs wouldn’t move. She tried to bend my right leg this way and that way but could feel the joint resisting. My fingers, wrists, hands and extra kilogram all tell the story. A body in crisis. A body that can’t move without stiffness and pain.

She has doubled all my medication. Doesn’t know how I’m sleeping, I told her I’m NOT! Every type has been increased. From six of one type, to 12 a day. From two of the opioid, to four. And I must double my anti inflammatory for the next week and then tell her how I am. Only when I got home did I realise she still thought I’m on the vertigo inducing one. So I’ll try again very slowly and see how it goes this time. After the week of double the anti inflammatory, I will then start on a stronger dose of the anti inflammatory. I don’t know what the plan will be if I’m not any ‘better’ in a week. She also injected me with cortisone.

She discussed schools and homes with big yards close to her and to special schools. And she was shocked that I taught the teens. She thought I was homeschooling only the young four because of special needs.

So yep, she’s looking forward to them passing. So am I! Please let it be so!

She has begun the process for requesting more Cosentyx. She said she loved my motivation letter and that I’m not the norm. Most of her patients don’t fight with the medical aid company, they make her the face of their fight. So it felt good to not be alone.

I drove home past shops I wanted to get veggies from. I’m in too much pain. And then I got home. Went to collect a few items of laundry that I knew would need to be in front of the gas heater or iron as it’s too late in the day for them to dry, came into the house ready to collapse into bed.

But..my angel who refused to go for a walk with her siblings comes out with big brother and pulled me around. She wasn’t sure what she wanted at first. So she took me around the house a bit, then into the play area then finally decided she wanted me to watch her jumping on the trampoline. And like every loving mother everywhere, I stood for as long as I could, and I watched her, spoke to her, loved her. Smiled back at her. And walked away after long enough that she was ok with it. (See, when I had tried to escape before she got on, she kept pulling me back to her side.🥹❤️❤️ If that isn’t as loud as “Mommy!! You’re back!! I missed you!” I don’t know what else she’d need to do to show me. Not when she’s shown me in her own very clear way,

So, I’m home. Thankful for all the doubling of my four types of meds and hoping the injection also starts working. And then, we see if Cosentyx will stop this level of torture

And yes, she looked at my blood test results and was NOT happy at how the inflammation is. Are any of us?

As for the special school issue? I’ve tried and searched and desperately searched this week. She too only knows of two government schools and they’re both too far for me to drive to every day. (They’re in her area.)

But what about weekends anyway? It will still all be on me. The videos, the lack of rest, finding each of them activities, feeding, preparing food, handling the screams and the hair pulling and pushes. Trying to stop the nine year old from banging on cupboard doors when the twins are trying to sleep, sorting out her screaming brother.

I won’t hide this truth. I am a Christian. I believe God have life so only He should take it unless I’ve prayed and He has clearly said I will die soon. Only then would I believe voluntary euthanasia is justified.

I’m not at that point yet where I am sure He can’t change His mind and free me of my suffering. But I did wonder. “Was it sin when kings fell on their own swords rather than to be captured by the army? And if not, would it be sin if I were to fall on my own sword and end this suffering instead of being even worse than this? Would I miss out on a peaceful and God-filled eternity if I stopped living? If I stopped the unbearable suffering? Or would God raise me and tell me that He would have understood back in 2022 when I started begging to die, if I’d taken matter into my own hands, knowing how much worse I was when I finally breathed my last?

I don’t know. And so I have no choice but to live. But it stopped being a HAPPY life long ago. Just typing this has cause excruciating pain in fingers, elbows and wrists. When it’s all your bones crying, you end up saying,

I really, really want to die.

Rheumy Tomorrow. Museum the Other Day

Grace by any other name1 Comment

Telling her I’m giving up. Or rather, I have no more hope left in me. I’m sucking up all the pain tablets I can but getting not enough relief to even feel any relief.

Is there nothing more we can do for pain? Should I see a pain specialist? What can they do? Maybe I should! See, I knew this blogging thing was good for me! I hadn’t thought of going to a pain specialist. Rheumatologists seem to focus on the disease and not the pain caused by the disease. Surely there must be more. I’ll ask her what she thinks.

I did my second Cosentyx injection this Monday and bled for the first time ever. It wasn’t bad. Just weird. Unusual. I’m going to only do my thighs seeing as it’s once every 28 days anyway. I don’t think there’s any risk of the area becoming thick and hardened like with weekly injections. I don’t know if

Life continues as normal. One child pulling my hair and pushing me harder. Some days she’s so happy. Her twin is still into Pharaoh. And school is still hard on me. I’ve failed to find schools that don’t have a uniform, are affordable, and in a safe area.

But the good news is that my teens are definitely- unless they fail their final exams – going to the University of Pretoria next year. I’m so happy for them! I last reported that my son got accepted for both his choices and that my girl got her second choice. Last week she got an email stating she’d been accepted into the The Faculty of Health Sciences!! She will do her beloved Nursing!! Woohoo!

I’m so happy they are going to live their own lives. As I state in a video I posted last week, my mother stopped me from both my first and second choices (I wanted to be midwife or am social worker) because she said they weren’t high class enough. By having freedom to choose, they are living my dream, and it doesn’t hurt that one dream is nursing!🥹☺️ If she changes her mind, I won’t care. I told her dad that they might find they are actually more drawn to something else so to give them some leeway. Advocate Mommy!

We went to the SA national history museum this past weekend. As expected, our Reo motored through and out as soon as possible. I wish she could tell us what she feels. Too much space? Doesn’t like the aircon? Too dark? Too many weird people? She didn’t even glance at any of the exhibits whereas her twin was talking nineteen to the dozen!

You can find the video I posted with more (poor quality photos) HERE.

Edit: I’m not going crazy or overblowing things! Well, I knew I wasn’t anyway! I saw my blood test results after typing all the above. My inflammatory markers have never been this high. Not each time we’ve tested for them, at least. They’ve even gone down a normal 2.4 when I was on Enbrel – for a short time. Otherwise other times it was 6, 5.5… This time it’s 14.4 and our standards say anything above 5 is “High.”

This will really help with my case! I’m truly suffering and need more help than I’m getting. Clearly the anti inflammatory tablets aren’t helping and the Cosentyx hasn’t started (yet.) My liver is also starting to complain. Thankfully it’s not too bad at all. Just gone higher than the norm. My AST and ALT are usually around 7, 18 or 10, 18. This time they were 22, 24. I’m not worried YET because the highest normal is 36. And, my kidneys have stayed stable. It could be worse! But that is not much comfort given how terrible I feel day and night.

Something surely has to be changed, right? Or we really will do nothing until two months’ time when we re-test? How ‘dead’ will I be by then?

My Handicapped Disc

Grace by any other nameLeave a comment

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.