Tag: Ankylosing Spondylitis South Africa

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.❤️

Morning Has Broken

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Autism and ADHD aren’t famous for helping their ‘victims’ sleep well. I have three out of four who don’t go to sleep well, don’t stay asleep, make hectic noise… Some mornings I don’t get to study my Bible because noise woke me and continues. Sometimes there’s boredom and one wakes the other. It’s just constant awareness of ‘something will disturb the night and/or early morning.’

And then when you wake up, you have my chubby five year old and her driving commands. On weekends, her dad takes her on a few of the drives. At first he’d tell me, “Just say no!” when he’d see me reach for my car keys. Now he sees why I don’t. The screaming and crying destroys everyone’s peace. Agreement leads to peace. And added pain for me in my bad leg.

So, we have Violet who comes in too often. The agreement was Monday- Friday and two Sundays till 1pm a month, but she tends to come in on more Sundays than she should! And my nine year old doesn’t help. I cringed one Friday when he said to her, “So we will see you on Sunday??” And she agreed with him! I reprimanded both of them. But, they’d made their agreement!

Some days, I want to cry. Since yesterday, I’ve been in a flare. Bones aching, fatigue back, almost didn’t reach my 10000 steps. Morning has broken and my problematic right hip is not giving me s break despite my 200mg Tramahexal. And that’s on top of the tongue that has two sores on it that are so bad I’ve asked the rheumatologist for help so I can eat.

I agree with the rheumatologist. The stress must be causing fibro issues. But wow, it took three full months for my tongue to obey my brain. It was scary. So I’m never touching Lyrica again. Which means that though I’m already on an antidepressant because it helps with nerve pain too, I wake up with a sinking feeling or am woken up by someone that will cause a sinking feeling that lasts throughout the day.

Why?

“Another day has begun. What will I be putting my body through today? How many times will I reprimand fighting children? How many times will I have to deal with my two PDAers demands and my ten year old’s struggles and my non-speaker’s demands? How do I get out of the multiple drives?”

Violet tries so, so hard. A few times, my girl comes to me saying, “car..car…” and then she is content to play and Violet watches her to ensure she doesn’t hurt herself. Other times she pulls her brother onto a scooter (really meant for younger chosen but her likes to ride on it anyway) and he has to keep riding around. One time, that ‘play’ caused her to speak! I was in there watching them just before I made lunch, and every time he stopped riding, she would pull the scooter. At one point, she shouted, “Good job!”🤣

Sadly, more often than not, she can’t be distracted or doesn’t allow herself to be distracted from her driving urge. And so, if I don’t go, if I try rest, or if I try continue working, it will descend into screams which cause her twin to cover her ears and ALSO scream. And then she and Micaiah complain to me that “she’s making noise!” And if I am in the loo (my bladder etc issues are back and I refused to catheterise myself daily so I have trouble with that aspect- taking ages to relieve myself) she will become so upset that there reaches a point where even when I am now driving, she can’t regulate anymore.

So..I’ll have to do it and have to when she wants. This morning, I’m truly dreading this day. But also, thankful that for a few hours, I’ll have someone in the house who wants to take the burden away.

My children’s photographer when they are at the playground.

Good job indeed. Earned me a few minutes’ rest and time to make their lunch without Little Princess pulling me or pulling plates or dishes out my hand because I’m not going to the “car.”

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

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

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

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

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

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

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

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

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

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

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

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

The next to go to sleep was her twin.

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

Two to go.

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

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

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

And then I saw it.

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

The garage

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

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

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

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

I want to be much better.

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

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

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

But I want more.

Is that too much to ask?

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

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

Letting Go

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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.

We Did It!

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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.🙏🏾❤️

Rheumy Tomorrow. Museum the Other Day

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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?

Call Me “The God Mother”

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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

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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.

Wins

Grace by any other name2 Comments

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

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

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

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

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

Second win.

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

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

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

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

She came home screaming.

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

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

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

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

Maybe.❤️

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

Over 43 Years

Grace by any other name1 Comment

I spent over 43 years feeling and knowing I didn’t matter. Even by age six, I was hiding my physical pain. Till one night my parents caught me thrashing around the bed which eventually led to a colonoscopy when I was seven years old that apparently showed I had Crohn’s disease.

The high school deputy principal couldn’t know it. Couldn’t know that I and the younger Coloured girl who lay next to me on the single bed in the sick room had no ‘love’ to go home to. That we were- first time meeting though it was- the only comfort the other would find. I was feeling tiredness and pain and she was having terrible period pain.

We knew we’d have to take a long walk to the bus or taxi rank and then sit in there with a whole bunch of strangers and then go home to a quiet house because our mothers wouldn’t leave work just because we weren’t well. So we stayed in the dark, sometimes sleeping, sometimes talking about how horrible we felt till the deputy headmistress came in and scolded us, shouting as if we were committing a crime, telling us that if we weren’t going to go home, then we should go back to class.

I don’t think she ever thought that we would have wanted to go home..home had represented comfort and care.

And so, two years ago, my husband lectured my parents about how they not only didn’t love me, the only child who consistently cared for them, bought them food and electricity etc, but they had taught my younger sister to despise me too. And he had had enough of her rude demanding messages to me. And had had enough of how they didn’t care when I was sick or recovering from surgery.

Today, we took the children to Vredenheim Animal Farm. The farm part wasn’t much to write home about. Giraffe House is much better. BUT they have been saved by the big cats. All taken from places where they had been born and raised in captivity- no idea how to survive in the wild, and so kept safe there to live where they’d be fed instead of dying quickly through never having learnt how to hunt.

I’ll add way more photos and video and info about how autism also joined us, in my next ‘random’ YouTube video once I get time to do so. This is just a glimpse.

So, when someone remembers my invisible disease, it means a lot. Some days, even when my arm would be in a sling, it would be forgotten by those who were meant to love me. Today, it was our ‘regular blog commenting’ lady’s turn to remind me that she thinks of me in my entirety when she asked how in the world my back survived my daughter who insisted she was tired and needed to be carried. (Wearing a pillow case on her head as she was pretending to be Pharoah.)

I matter. My silence isn’t taken as a sign of a lack of suffering!🥹She’s so far that our cultures are very different- my dry humour doesn’t translate in her country. But her heart crosses all the borders between us.

She didn’t just see a mom carrying her daughter. She saw an AS patient straining herself even more than normal. I didn’t even tell her that the ride there was already unbearable for me. I didn’t need to. She would have guessed it had she known how far from home the place is.

Connection. It was through Facebook in 2008 I believe, that we connected. And that connection has stood the test of time. We have thanked God for giving us the forgiving, gentle hearts we have, willing to treat kindly those who have hurt us and lied to us. We have discussed our children, our husbands who are generally absent – hers working in a different country and going home once a month, and mine traveling a lot and running and resting a lot when home.

We have despaired, and we have thanked God. We have worried about mutual friends and prayed for our sisters. Maybe it’s because she too had a complex childhood with insults thrown at her. Maybe that’s why she’s a better person. I firmly believe maltreatment in your formative years either leaves you bitter and unable to be human and kind and gentle, or better. More empathetic, caring and concerned about others. She is the latter,

I’m thankful that shared suffering and lack of love has led to a love that transcends borders, time, and distance. I pray we both allow God to transform us so that we all spend time together in heaven where we won’t have any sick children to talk about, or lack of this or lack of that. Just an abundance of goodness.

And lots of love, from the One Who is love personified.