They said I should write a book

I might as well do a whole new post instead of adding to this morning’s one.

Well, I’ve received my reply from the rheumatologist. She too is suspecting Sjögren’s disease so I’m at the pathologist’s waiting for my blood to be taken. Ahh, the joys. I’ve made an appointment to see the opthalmologist this coming week as well. I do not want to go blind. I do not want to get lymphoma or any other cancer. I will book my pulmonologist appointment now that the children are not here and needing my attention.

Sitting in a pathologist’s waiting room is very funny! I felt sorry for a couple before me. The husband had a vasectomy done three months ago and it was time for them to test a semen sample to check it worked. So he and his wife done the deed but then he did his deed into the specimen bottle. And they took it to a lab. But then they said they don’t do semen analysis. They came to the lab I was at. But they were told they don’t do it either. So now, the semen was too ‘old’ for testing. The receptionist found a different branch and had to make appointment for them and she asked if they’d have intercourse at home and then hurry to the hospital where the pathologists are or do it there at the pathologist…I wanted to shrink for them in case they felt embarrassed. The receptionist was feeling bad that she had to ask all those questions with me there waiting.😂But they needed to book a specific time to bring the sample in. So now they also had to figure out if they’d manage to wake up early enough to do it but also not be so early that they hit traffic and don’t make it on time…I know the procedure cos he did it too so I almost shouted that they must not stress, I’ve been there, done that.

And then, because of traffic and the available time slot, they had to start all over again phoning and booking at a different place and answering the same question. I know their surname thanks to that! And what they’d done this morning. Hilarious. Everyone was laughing because where they fest our blood is so open and the rooms so small and just curtains divide the little spaces.

So now we wait. Please don’t let it be Sjögren’s.

A recap of my talkative twin’s verbal feedback from the educational psychologist… Confirmation of what I’ve known. Level one ASD, PDA, ADHD combined type, hyperlexia and highly gifted. She was testing at two years eight months better and at 97th percentile cognitively and academically!!

Her only hold back is her medication! I’ve BEEN saying that! I’d already asked the paediatrician early last year to raise her ADHD meds! Her processing is BAD, 6%. And motor visual skills are worrying so I’ve asked the OT if she’s included assessing visual motor skills in this current set, if they have been working on it or not, so we can see if she’s progressed since she started OT or not. If not, then she will be child number three to need vision therapy.

The other negative is the same as Ammy. Emotionally, she is very hard on her self. She feels like she’s doing badly even if she’s not and wants to be able to do ‘everything’ even things she isn’t meant to be able to do anyway. Very true even at home. She puts way too much pressure on herself. And when frustrated she did mention that she throws things. And hits her poor sister, Ammy!

The last average skill is auditory processing. She sees and recalls much better than she hears and recalls. So that’s another area to work on. I did figure that out because of her struggles with isiXhosa and Afrikaans. She cannot hear the sounds and with isiXhosa she can’t even tell that she can’t make a click or that she’s making the wrong click.

A funny one was how she hadn’t yet learnt that ‘oh’ makes f sound. So she asked the psychologist why in the world photograph is spelled like that. Then she said, “Ohh!! Like Pharaoh!”

She is also very nurturing and caring. Very sociable and actually too sociable and needs to learn not to be so open and loving with people. Very worried about my being sick.😞Wants to take care of people. Exactly what we see here at home. She even told me the other day, “Here are some letters we made for you! Mickey’s doesn’t look so good and I don’t know what it is, but I told him he did a great job! I don’t want him to feel bad!” My heart!🥹🥰🥰

So man, if we work on her visual eg. Skipping down to a different line instead of completing a line when reading, upping or changing her ADHD meds, so she can focus, we will be doing super! I’ve never had a gifted child before. I do know they need extra so they don’t get bored! That’s why she keeps telling me “it’s ok” that the “maths is too easy.”😂🥰

There’s more that I can’t recall that I told my friend just now who asked how the children are but these are the things I recall. I began typing before she asked me.

Regarding performance, she also did the same as she does with me for school. She got up and was pacing up and down, flapping her hands when excited, spinning and dancing BUT still focusing on her work despite all the busy-ness. I love it. She does so many strange things like getting off her chair and sitting on the floor, or singing her work or facing the back of the chair with her legs over it! But she is still working!

I’m so relieved. She will need extra time and struggle with high pressure things like exams, because of the pressure she puts on herself to be perfect, but she is super intelligent!! Highly gifted! Just like Vi and I have BEEN saying. And that means, more opportunities for her future if her ADHD doesn’t trip her up.

As the educational psychologist said, if she was someone else’s child, because she’s so clever, she’d have burnt out around grade 4 when she usually sees them, been told she has high anxiety and then been diagnosed as autistic at age 40. And then all the masking she’d have done and having to handle the mental load of being autistic while people assume your brain is neurotypical like theirs and so they expectations are high would have burnt her out. Nobody would have known she has sensory issues. Nobody would understand how desperately she needs her bunny to soothe and regulate her so she can focus on her work…

I will buy a weighted lap blanket for when she’s doing school. ADHD is hectic. Hers is severe. BUT, her cognitive skills will help balance it out. Like when she takes a while for her working memory to work for memorising counting in two’s, so I bought a poster with the different types of skip counting and she looked at it, sang it and then randomly recited the numbers to me, telling me she had been practicing them all along. The recommendations for that were what I’m already doing so it’s going to be cool!

It’s weird, coordinating with these people all on my own. Going to do blood tests with only me worrying about myself. But my sisters are just a voice note away and we will carry each others’ burdens.

Have a lovely weekend, all!

My poor girl had the same issue with starting a new grade level yesterday morning. Grade 2 Reading (Literature) and she panicked just looking at the first page.

What the OT is seeing during assessment is exactly what I’m seeing with her school work. It’s a mix of both so you can’t even tell her, “No, don’t worry, it won’t be difficult!” because it very well might be. It does make me worry even more about her skills. Or rather, her future.

Before the appointment yesterday, I’d told them how she feels bad she’s not at grade level but at the same time is not doing great even now. We’ve been doing contractions eg. Will not to won’t for ages but she doesn’t remember the term even though every day the book asks her to “Correct these contractions” or match the phrase with its contraction…” Same with prefixes. We’ve been doing them and she knows how to find the root word, but she freezes when she has to tell you what it is. And she gets it wrong. It’s like her brain is a sieve and information falls out with only remnants left. I see it often with Zulu words. She asks me multiple times over multiple weeks, what a word means. I don’t know how to make things stick.

I don’t know how their brother did with his part of his assessment with his occupational therapist, but Twin A did wonderfully. She told me as soon as they got back that she tried her best to remember something and she actually DID! She did “an amazing job!” Which was confirmed by her therapist.😊I wish I could share her abilities and confidence with her sister. My boy is relaxed though he thinks he has better skills than he has.

You just want your children to be ok! You want them to have a bright future. But it’s becoming dimmer and dimmer for my 11 year old and I wonder what that report will say. Last time’s was already sad enough with her emotional age so much younger than her actual age which I still see today. It’s more that her challenges hurt her emotionally. That is the part that makes the heart ache. And I can see we will have a lot to take in when they’re done with their assessments.

Another night with multiple wake ups, night sweat and pain, might as well type! I’ve noticed that my mouth dries up when I talk. Doing videos is becoming frustrating. Mouth closed, not as big a problem. Why?

My friend’s question made me put all my symptoms together and do a search. It’s all still pointing to Sjögren’s disease which I really hope it’s not! I went to a support group and oh my word, I see why Venus Williams had to take a long break from playing. And also besides age, why she is struggling to get as close as she used to get.

The sore throat I get when I breathe in deeply is just the start! It’s now sore on one side especially and been sore for two days. Your throat can become so dry that you choke and die cos you can’t swallow! What????? Heck no! I already have enough throat constriction worries with AS! So they go to their gastroenterologist for him or her to stretch their throat every few years. 😩They too mention how if they keep quiet, their mouths don’t dry out as much! Just yesterday, I was struggling with my upper lip joining my lower lip in dryness and oh my, their lips crack and tear!! I’m already taking the suggestions and using them. One has been a failure. I’ve been using it already for my horrible lip. (According to my mother and shop workers who ask why it’s so dry.)

And that’s the other thing. Everything goes dry! This disease impacts every single moisture producing gland in the body. It’s good my husband stopped being a husband in every sense when he got his floozy and became her sugar daddy. Cos no way! Menopause already caused problems.

But it’s scary, the same issues I have with my lungs- the fibrotic bands and scarring- happens with Sjögren’s disease too. Kidneys, lungs, heart… And what did I recently say about fearing lymphoma? It increases the risk and lots in the group already have it and have gone on chemo for it. Others had lymphoma before they were diagnosed. And others are currently in treatment. What life is this when every autoimmune disease raises cancer risks? How do you relax when you’re already on high alert due to caring for special needs children, sickness and pain and now have to worry about your AS treatment and side effects and impact of the different diseases I have?

But, I MIGHT have a reason for how slow the rheumatologist has been to respond. I’m hoping so at least. Though your blood test can be negative for it – which my blood was for AS- you have lots of tests. Pulmonologist -already have one and annual tests. I didn’t go last year. I am bad. I will make an appointment as soon as I return from Twin A’s educational psych feedback appointment this morning.

You also have a opthalmologist to test your eyes’ dryness and treat them. You get cataracts so he will then do surgery. You have damage from the dryness which he treats too. Like the scratch I got on my cornea one night.

And the lip! A dermatologist ignored me years ago about the lip. But what if it’s not psoriasis but Sjögren’s? It can start like that and stay as the only symptom for years because Sjögren’s is a slow disease to form.

And one of the scarier tests is the lip biopsy. They need to cut the inside of your bottom lip and pull out salivary glands to check how they are working. Stitch you up and off you go. Inner lip. Remove salivary glands. Nooooo!

Maybe she’s putting together the testing? Maybe she’s on leave.

I am hoping she or the GP if I get no response today, will diagnose me based on symptoms alone. Please!! I need help. See ya later!

Am I in pain in my hips and lower back because I exercised too much? Or is it because I really do have Sjogren’s? I emailed the rheumatologist yesterday because of how severe the symptoms have become. I noted all the symptoms I shared here, including how when I eat, I feel full way too soon and I get abdominal pain, and told her I was emailing because I had been trying to breathe in to do one of the AS exercises she’d recommended that tries to keep your ribs from fusing so you can’t breathe well, but the throat pain was unbearable while trying to breathe in. This dryness is now too extreme and my bone pain is increasing – which happens with Sjögren’s too as it impacts joints. How fun. Just when we get a treatment working to slow AS down, something else pops up.🥹

And just a few minutes after I sent my desperate email to the rheumatologist, my friend asked me how I was doing. When you’re used to constant pain, don’t feel like the world revolves around you, you constantly ask what state your loved one is in. Within the span of a day we check on each other twice. Wanting to know how the day began, and it has unfolded. Asking about triggers that could have increased pain ( my method) and her asking straight out how the day went.

And it is GOOD.🥹You know I have even had to take myself to the Emergency room at least twice that I can recall. And was bad enough to need actual treatment each time. He refused to take me and never checked how I was. He never checks how I am. One time I was trying to life up a container of water I’d been using to try deal with the foot pain, but bending is a killer, and lifting it up made some water spill and it was HEAVY. He stood right there in the room and didn’t offer to help. Another time, when my hot water bottle burst and I had to take the entire bedding off, again, no offer to help even though he knows doing bedding hurts my shoulders and back. I was on my own, in horrible pain as it had been in the evening when AS pain builds into a crescendo.

I could go on and on about the emotional and physical neglect I’ve had but you see, it makes both of us even more appreciative when we get the opposite. Just a simple thing like her telling me she liked a dress I was wearing in a video. Her telling me I’m beautiful. Her thanking me for the work I’m trying to do on YouTube to prevent even just one more girl trapping herself in our situation🥹And she has the same reaction when I praise her. It’s so rare it makes you emotional. I used to state on my status how kindness always makes me cry. It’s being cared for when the one who had vowed to care for you, only cares about himself. It’s the loneliness and pain of having an adult who doesn’t care, doesn’t see you yet you poured yourself into them and you see them caring about others.

Life is beautiful when we love from the heart. I posted a video yesterday on how my church is supporting me since revealing to them what my husband has been doing since 2022 and is cheerfully continuing to do. I didn’t mention the one lady I thought of as a friend. We’d both shared how neglectful our husbands are over the years. How they never ask how our appointments have gone… I told her I’d just discovered my husband has been unfaithful again. Her reply? “I’m sorry, sis.”

Then she acted as if I’d said nothing thereafter, messages came of, “How is everyone?” Or “How is the family?” The usual messages she sent asking how we are. But there is no family , there’s a man living his life, a single mother. And I hate that she doesn’t see that. I know she didn’t marry for love, but surely even so, you’d respond with better, more empathy?? So I told only a few directly after that. People I knew would be safe. And they haven’t disappointed. One is one l mention in the video.

So, as I wait for a way forward regarding the body that’s dried up and is in pain, I look back at the terrible night. Eye pain woke me at 2am and kept me up for three hours after I put eyedrops in. Throat pain too remained and I started wondering if it’s not the dryness but the children’s awful virus they’re battling because it began with a sore throat. And after making my trek to the toilet, the bone pain hit hard.

But I went through that with a sister who is in a different time zone. And no, never minimise your pain. I already know you care and see me! And that’s what I love. The way love reciprocated. That is good enough. I checking on you and you checking on me already shows me you see me! But I will say that it is noted because so many complain about two weeks of something I live with daily and act like they don’t KNOW I live with it daily and there’s no cure for mineZ I appreciate every word, even the unnecessary ones. But it sounds self deprecating. And she already has THAT in her husband already.

So, to the readers what does it mean for you? What can YOU do?

Please, I beg. Find your friends whose spouses are neglecting them and pour love into them intentionally. You will go far into healing wounds and showing them how God sees them.

And this is your random modest workout outfit photo, and my children’s sun protection modest swimwear.

Guess what I did! The AS exercises are to try reduce stiffness, try stop your bones fusing in a hunch back position, try stop neck from fusing in a curved position, to stop your living with ribs closed as already mentioned, and building muscle to undo how AS causes muscle atrophy and to help support our dying skeletons better. One is a glute bridge. I added weight to it. I feel sooo rich.😆

And random!

Take care!

Good day, Shabbat shalom, hello! Trying to sound cheerful because I’m not feeling it! Fake it till you make it, right?

Instead, I’m feeling sick and uncomfortable and sad and slightly worried. But let’s begin with the first small drama of the day. Last week, Ms Talkative Twin cried and cried. The first thing she had asked me when she saw me after she woke up, was if she will grow up to become an animal. Preferably a cheetah.😩My “No, my Angel, you’ll always be a human.” Was met with angry disappointment as if I’m the one who decreed that humans be human! Not my fault!

Today, the drama of the morning was that her twin got into her bed. How dare she? Forget that she was out of it and meant to be getting dressed! She wanted her sister out.

Yes, she always covers her head with something. Duvet cover, comforter, since she was a toddler, she used something on her head, to soothe her when lying down.

Let’s go to me. Awful abdominal pain. I don’t know what it is. It comes and goes as if my intestines are twisting.

I don’t know if I have joined the group of AS patients who also have Sjögren’s syndrome (another autoimmune disease commonly occurring in women with Ankylosing spondylitis) or what, but the dry mouth, throat and eyes are bad. When my eyes become too dry, I start not being able to see properly, when I don’t drink within five minutes of my last drink, my throat starts to hurt from being dry. Like the walls are sticking together. My mouth and teeth feel scratchy and teeth feel like they have a thick rough layer, and I feel like my eyes are heavy and they too become scratchy if I take a while to put eye drops in. You can imagine how awful I am during the night when there are no eye drops and no drinking water every five minutes. One time in my sleep, I tried to scratch away the sandy feeling in my eyes and scratched my eye. You can imagine how the pain shocked me into wakefulness!

Pain, eyelids heavy… it’s disconcerting! Sjögrens apparently more common in AS patients with interstitial lung disease. Me. Great.

I’ve just checked. Sjögren’s also causes dry gastrointestinal tract too. And can impact the liver or pancreas. What if these symptoms are all linked and I’ve been complaining about weird IBS for the wrong reason? And like all autoimmune conditions, there’s no cure. Just keep treating it the way I’ve started. Eye drops, dry mouth capsules, dry mouth spray which I’ve ordered, capsules… Maybe there are prescription strength ones that wouldn’t require me to keep putting eye drops in my eye and keep drinking every 5 minutes. I don’t know, guys! If this is Sjögren’s then the daily abdominal pain and bloating?? How do we sort that out? I struggle to drive for more than five minutes because my eyes dry out and I can’t see properly no matter how often I blink.

Then we go to our boy, seen below after I put eye drops in his eyes.

Yes, we have a theme.

I got his father to take him to the opthalmologist today. I cannot risk being in the same vehicle as he (as well as the other small children) he’s still got his very wet, chesty flu cough and bad rhinitis. Plus someone has to keep watch over the crazy calves (Surname means Cow for any new readers.)

The first step will be to use more drops for infection. Four times a day. And just in case the redness is caused by allergies, he also has two drops a day of allergy eye drops at different times to the other type. When I was giving his big brother instructions, he said, “So really, it’s six drops a day!?” And he refused anyway so I shouldn’t have bothered giving instructions. He said he is scared his hands won’t be steady.😅

The opthalmologist doubts it’s simple though, because we’ve already treated Micaiah with eye drops for infection and the symptoms aren’t going yet by now he should be fine. So… He will go back in two weeks’ time for testing if his eyes are still messed up.

As mentioned in the previous post, I’d asked the behavioural optometrist to take a look as the appointment with the ophthalmologist was too many days’ wait. She had indeed said it could show an autoimmune disease, or a disease of low immunity. We will see! Poor boy. I guess that’s what they would be testing for. I really pray it’s nothing. Oh, he also has an infection of his actual eyelid. So we must wash that carefully so it doesn’t enter his eye and make them itchy as the scratching makes his eye inflammation worse.

It’s not great. It is not good. I want to take care of my children more than I can. The stomach pain gets so that I have to come hide. I’m making natural medicine for the horrible flu. Those fevers have been awful. The one nights it was a Sid someone had poured a bucket of water on my poor Twin A’s bedding and pyjamas.

Wait, do you know that I’d never seen fresh turmeric till this week? 45 years old and never seen it. I’m deprived.

So I give them the turmeric, ginger, lemon, honey, sprinkle of cayenne pepper mix, herbal cough mix, homeopathic rhinitis syrup for their leaking thick but blocked noses, Vicks rubs, normal ADHD and ASD meds, normal supplements, echinacea, humidifier… It’s just ongoing. But I feel like I’m not doing enough because I’m doing it behind two masks – so uncomfortable- and I can’t just sit and massage them. I go do one child and then run back to ‘safety.’ Then another…No hugs. But the twins can’t stay away from me. And they’re both using their mouths to breathe on me. It’s scary.

If you’ve read the entire blog, you know that catching an upper respiratory virus is deadly for me. So balancing that fear with being the only caregiving parent is hard. Hoping my children get well soon especially as twins’ autism is not helping. They’re both extremely miserable. And as the days pass and the sickness continues, Talkative Twin is more tearful and sensitive while her twin wants to go drive way too often. I wish their noses would clear up! And no, nasal aspirators don’t work.

I had a light hearted post ready. I was going to post about how Amarissa was asking if you’re jealous of my homemade ice cream and frozen yoghurts. 😊But I’m doubled over in abdominal pain as I type, I’ve taken muscle and pain capsules for back pain, and sad for my miserable children and worried about my boy. The possibilities don’t sound curable. Surely my incurable diseases are enough for my family! Why more?

Hoping for the best. That’s all I can do!

Until next time,

Signing out

Grace by any other name…

Man, it’s been horrible for the past few days. Once again after a trip to the Aquarium, the children started dropping like flies. Do parents take their sick children there? How come shopping trips don’t do this??😭

They went on Sabbath morning at the request of Twin A. The first one to exhibit symptoms was Ms Ammy, above. After a long Sunday of us acting normally, she told us she’d had a sore throat the entire day. Ack! Why hadn’t she told us? I’d have tried to keep them apart from then on! When I told her I’d have to medicate her, give her lozenges for her throat, she said she actually felt fine “now.”

Alas, by the next morning, she was worse and her brother had joined in. Both were weak and miserable. So when T, their special needs aide and driver came for the morning shift, I asked him to rather do some school with Twin A and then watch over Twin B. See, I have a long story and maybe it’s time to tell it!

Segue into another topic…

Our first son was on a good path academically. I knew his strengths and I knew which subjects would work well for him to get his university exemption. But his father told him to choose a subject combination I knew was bad and I’d said should NOT be taken. Needless to say, I was right. And from now on, I will step up and protest like I did when I told the father that he had messed up. Of course there was no apology, he told me to ignore the past! So now, his options are limited because he only got a technical school/vocational school certification which only allows for higher certificates at private universities. He can’t even study a diploma.

Last year, he messed around. Wasted time. Played online games, was on Twitch, Reddit, many different personas for one website! It was creepy and a big waste of money. There are no bursaries for private universities so we have to pay for both children. But he did nothing except pass ONE subject. So he came home.

He’s been home since July. Our aide has been working half days Monday-Thursday and our son has been ‘working’ the afternoon shift. But now he’s chosen his own certificate and will be starting again on February 16th. Big sister is going back to university second year in February 1.

It’s time that our very busy Twin B, who walks around like every 4 seconds all day long, to get used to T being her aide as big brother won’t be around anymore. With her intellectual disability, she can’t tell what’s dangerous to do so she needs to be trailed around all day long! For someone with AS, it’s not something my doctor would ever approve of so we had to get T to stay longer and Mon-Fri now.

With the ones he does vision therapy and Maths with, sick, I asked him to teach Twin A and do the special needs aide thing with Twin B. Thankfully she was more rested so he was able to just watch her. Twin A wasn’t interested in that though. 😅So I did a bit of school while she then went to him.

See, legally, homeschooling is when the parent or grandparent educates the child like 97% of the time in their own home. No online school, no full time tutor. With our son being highly unlikely to have a job or finish anything academic, I decided T will be his full time tutor anyway. Special needs will be my go to should the government ever have an issue with that! And then I teach Amarissa everything else except Maths which she does with T. And I teach N everything. And she wanted the everything as that’s her routine! She is autistic you know!😉

Then we started worrying about her twin. We gave her meds on Monday and hoped her runny nose was her allergies talking but also gave her pain meds in case she too was in pain like her sick sister and brother.

Vi came in yesterday – I’d asked T not to come as I didn’t want him passing the virus on to his heavily pregnant wife- and man, she loves my children!

She checked on the sleeping two who were still miserable yesterday as they’d been on Monday when they slept all day. And it hit me that their father never does that. He just goes past their closed doors and leaves for work. When he comes home, he doesn’t ask how everyone is and if anyone else has caught the bug. She really loves them because she is their second mother. I say so because she said, “Let me go see my daughter” when she came to work yesterday and that really really touched me. And then, she made it even more emotional.

She commented that when your child is sick, you too are sick. You stress and feel horrible for them and helpless and anxious. Exactly! I even forget how sick I am because I’m worrying so much over them! I’m thankful too to their aunty who asks me how they are via WhatsApp. I can’t relax anyway because of the kind of challenges the children have, so to add sickness to children who become overwhelmed already by normal life is awful. I just want to take it away from them and I can’t think straight. I just want them better!

We also were lamenting how Twin B might be also dealing with the sore throat that began the descent into sickness, but can’t tell us. On Monday she was so angry so suddenly that Twin A came running huffing and puffing breathlessly to escape her as she again attacked her siblings and tried to smash the TV down onto the hard tiles. She told me she was running away to get safe. Man, I hate autism!

Later that afternoon, she asked me if we couldn’t swop her twin for a better one. 😭💔 She asked if we can’t give her to someone and then we get her a sister “who doesn’t scratch people.” If she had long hair she’d also know the pain of it being pulled out by the roots and your neck snapping backwards as she pulls on your ponytail.🥹

But by the evening, all was forgiven.

She thought it was sweet that her twin sat at her feet. Close. As close as her autism allows.

And yesterday morning, she followed her wondering twin to my bedroom. “Look! We are here together! I’m following her so she stays safe!” 🥹❤️

Is this what Karen my foreign also abused friend says she loves in me? Is this the strength she’s talking about? To not fall apart when life is so painful? I haven’t asked her. But she has said words to that effect. And it is a blessing. I have just felt so alone and unseen in this special needs life for so long!

And that is why having Vi also as miserable as I am has been great. Imagine all day knowing you left sick children with a wife who must not get sick but you never check on them all day! Then SA insists on visitation with such fathers after divorce when they couldn’t even truly father when they had your support! Very unfair to the neglected children. This is the stuff that makes women stay. At least if the children are always with you 24/7, you can be their safe space. The older one who can choose, said they’d only want one day a month visitation. And not 24 hours. Just a visit during the day and then come home to me.

When we divorce, will the court agree that I’m the only safe parent? They force shared visits here. As in, if this year they have a birthday with me, next year it must be with the father. A father who never celebrates them!? A father who has never bought a gift!? Not even a card? And is never interested enough to even ask what the card and gifts I bought his children, are!??

That is not love. Love is asking how they are. Love is T hoping they will get well soon when I tell him to not come yet. Love is the WhatsApp message asking how they are now and remembering the other issue…

Possible autoimmune disease for our 10 year old son due to an eye infection that also saw us notice nodules in his eyes. One nodule has grown so big we don’t even need the optometrist’s machines to see it. The combination is either due to a low immune system disease or autoimmune disease. Or just random. But my one friend knows I was concerned about his blood tests last year. Something was off with a lot of numbers that the paed ignored. Lots of “H” for high, and “L” for low, warnings in his full blood count. But he was only focusing on his low iron. Now I wish I had taken him to a haematologist to discuss the full results.

So yes, folk. Those of us who love the children are worried about their virus and about my boy’s eyes. Both red and worrying. I am grateful for the care the children have from those who have given them the attention they should be getting from their father. It means a lot. We can share the worry over the coughing that has disturbed my night which means Twin B is going to be even more miserable and dysregulated. We can be sad that Twin A is sick. She came to me multiple times last night late into the night, complaining of her blocked nose. At 3am today, she was up. And at 4am she came, couldn’t sleep again as her throat is too sore. Aashhh.

But after this closeness, would you be surprised? She kindly suddenly decided to play her sick twin’s favourite song on the Kahn Kids Academy app and her twin came very close to her after I’d managed to keep the others a bit far away.

During the holidays, they even wanted to phone T! They’ve never wanted to phone their father when he’s been away. They don’t hug him daily like they hug Vi twice a day especially when she’s leaving and they are sad. My Twin A even wanted me to get her to sleep over! But we don’t have beds! I would! It is so relaxing to know I can rest my sore body and she will watch them in the evenings. Alas, no space!

As for me… I’ll have to continue wearing my mask and hope the children get well soon and we get an answer to the eyes and their inflammation and nodules.

I’ve been up since 3am and it’s now 5:17am. Before that, my ooor girl’s coughing was disturbing me. I don’t have the mental ability to edit. I’m so sleepy and nauseous – medication side effect. Chat to you soon!

My boy’s dysgraphia has improved! You can read what he was trying to write! First time ever that anyone could make it out. I think the dysgraphia curriculum might be helping because just recently in October, even he didn’t know what he had written in the twins’ birthday cards! Obviously, there’s no cure, but they can improve! When she came down for holidays, Eliora spotted that Ammy’s writing has improved since she last saw anything she’d written! Ammy very proudly told me her big sister had told her her writing had improved very proudly.

Also, my boy has struggled with his ADHD and focusing. He hadn’t hit above 90% for any test or quiz, so he will be so chuffed to know what he got!

And it is confirmed. When I was NOT preparing Maths school for the two older kiddies, and not preparing or teaching any formal school for our boy, the pain was less. But now that it’s not only the girls who are doing school as had been the case for a few weeks, now that it’s the full complement of subjects, my body is screaming again much earlier, I am resting much later (alive just finished prepping for tomorrow now at 20:45 while their father is already nicely asleep..and the fatigue is back. Add IBS-C flare and you have a mother who just wants to lie down and rest! I see why the rheumatologist wanted me to stop working, folk! I feel so SAD! I was even able to exercise with the children and not feel it! Until this week.

I have learnt to never ever praise any man ever again. There was a time I thought this one man was such a good HUSBAND because he praised his wife for each baby born to them. Praised her strength even online, spoke of how emotional it was watching their son emerge… I used to wish my husband could be like him. Labour is taxing, and other men also spoke so admiringly of their wives. Never happened for me. But, that same man told me he had been beating his wife and also had been unfaithful for who knows how long, with multiple women including her own sister.😭😩😩I think he knew someone would have told me since when I told a young lady, she said she thought I’d known he was like that as “the whole church knew!” Oops, then I clearly had ever been excluded from being a true member! He had been saying that if we divorce our cheating spouses – she had turned the tables on him and wanted out the marriage and he’d found out about her infidelity the very same day in 2016 I found out about my husband’s- and married each other, he would write a book on how to turn your life around and stop beating your wife and live a pure life and I’d be his fresh start.

🫣

Needless to say, better the devil you know (very intimately!) if you can’t escape your marriage at all.

So, he actually was not worth admiring anyway.

So I’ll just say that I wish my husband would tell people how hard I work and how late into the night I go- for the sake of OUR children.

This is a worksheet for part of Amarissa’s Maths work tomorrow. It’s from the dyscalculia-friendly curriculum. I wish I had someone to boast about all the research I do and effort and time spent researching different curricula for our children’s learning disorders. My friend, and he himself, tell me about the praise they hey from their bosses. Where is my acknowledgment of how I’m killing myself to give my children every chance possible to reach their potential?

Or how about how the children are on different curricula completely, depending on who has which challenges? Surely it’s noteworthy that you have no clue what’s out there but here it is, in your home, prepared for your children? Planning taking place at night because during the day, motherhood and teaching were happening?

For this one in the photo above, the manual has many questions and he must choose the correct one from his flash cards. He can read these words perfectly. But I love the executive function aspect of the task so I included it for tomorrow but with only five clue sentences or hints. Where are the eyes to see that? Where are the hands to rub my extremely painful back?

I gave a lot. I would send loving texts, naughty texts, and prayerful texts. I even taught another church lady to be naughty and she embarrassed her husband once by sending one while their son was there and the dad turned red-if he could have, given he was black. 🙂The one I used to pray for once even told church that when met with a challenge and then suddenly able to figure a way out, he knew it was because I had just prayed for him.

But he has no clue what my difficulties are and there have been no accolades, rewards, versions of Boss’s Day gifts… No “I value you.” Just pain. And as I lay with my body wracked in agony, the emotional neglect hurts even more than when I’m not in as much pain. I am dying..and it’s not even appreciated. Yet it’s for OUR children, not mine.

The truth is ugly. The truth is painful. The truth will help people see how you can bow under continued strain, but don’t have to buckle under it and crawl on your belly like the one who treats you like you’re horse dung. Through Christ.

Yesterday was the first ever visit to the dentist for Twin A. The others have been, but I’ve always taken them one at a time and sat inside with them as has our helper once also gone in with Amarissa. There was a dentist who was recommended by Google as being great with autistic children but when I asked the children’s father to take Twin B, they didn’t even understand that she would need to sit on his lap as they were brand new to her and They didn’t expect her extreme anxiety and fear! Insisted she sit alone and even with us she barely opens her mouth! They also kept them waiting AGES which made our Twin B even MORE anxious and stressed.

So, scrap that for now. After all, I’d only sent her in because I wanted to be sure she wasn’t angry because of tooth pain. They allegedly did check and she had no cavities. Couldn’t even start cleanings And this now, is another reason why I had sent her with her father who is allowed to lift her while I’m not.

So, I decided to write in a community group, asking if anyone knew of dentists who really are neurodivergent-friendly. I got a few recommendations. One is a block away from us and I see his rooms often. I even recalled my husband had seen him. He didn’t remember. He said he didn’t ever see him. I told him I’m sure he’d been. And yep, he’d gone to him in 2010. One thing I know is my memory isn’t that bad after all! (Remember how I thought I was having the beginnings of dementia when the brain fog and menopause brain had kicked in? I am happy to report that the brain fog has reduced in intensity! It was scary! Not knowing where I’d placed something, never recalling what I’d wanted to say, putting things in the wrong place and only realising later when I or someone else finds it there…)

But, their father said he wants to go to the dentist we used before as he knows them. The one he saw when he purposely almost got me killed and bust up my tyre badly so it was undriveable . Remember that? When they told him to take the sedative for a procedure once he’s waiting in their waiting room but he thought he knows better than the experts? The time I got into my car with him as I’d need to drive him back sedated and I asked if he had remembered to bring the sedative along and he then told me as he drove, that he’d already taken it? When I then told him to stop driving and get out so I can drive but he refused?

I remember the fear as he laughed at me. “I’m not getting out! Are you scared?” and laughed. I panicked. There was no red traffic light. His whole demeanour changed and he became the person he truly is. His character appeared. And it was frightening. It was like I was being driven by the devil. I kept yelling at him to stop the car so I can at least get out! He refused and sped up instead, laughing at me . He started weaving in and out the lane, making me worry he’d smash into other motorists, going faster and faster. He ran a red light and I was so scared traffic that was allowed to come would smash into us but at the same time, it would have stopped him.

He then drove to the edge of the road over the yellow line where there’s a Vlei (body of water) and thankfully, eventually drove where there is a safety barrier. So he scraped my car on it as he drove in the edge of the road. I just heard scrape, scrape, scrape as he kept driving. I was so scared as we approached a curve where there’s no barrier to keep the car from rolling over but he kept going. No stopping. I phoned the police to try get them to form a blockade to force the car to stop by smashing into them but we were now close to the dentist anyway. He kept smashing the front tyre into the pavement, drove wide and across the lanes onto a centre MyCiti bus lane then back again over the bus lane kerb and went SMASH, HARD, into the pavement. Tyre burst funny and rim damaged. That small pause helped a I jumped out the moving car as he turned the steering wheel to go on to the dentist.

The pain in my legs from jumping out the moving car was horrible. A man could tell I was in distress but he kept walking after asking if I’m ok and I told him no. My car was damaged, my legs sore because of sheer arrogance! He did go into the complex and parked wrong. He opened the door and like an extremely drunk man, sat but couldn’t sit so he was bent over at the waist then swaying backwards like he was going to fall as I limped to the parking lot and watched through the see through fence.

I couldn’t lift him. He couldn’t walk without support. So I had to go in to the dentist and ask the ladies to help me get him in. Given his flirtatious nature, I was terrified he’d say something inappropriate to the ladies as we supported his heavy weight in the elevator up to the floor their rooms were on.

I went back down but I had no tool to remove the lug nuts. The sellers had not left it with the wheel jack etc. I had to call my insurance emergency line, they said their lug nut guy wasn’t working as it was a weekend so would search around for someone and gave me numbers for a place nearby but it was closed. I had to ask church friends and hope they’d not gone to church, (They had not.) if perhaps their Audi had the same ‘key’ but when they came, it was not a match. Finally, Audi found a guy who had master keys for all types of nuts and he came.

I had even asked my oldest brother who owns an Audi. Plus I just needed someone. I was now traumatized guys. I’ve never had someone just ramming me into barriers and laughing as I pleaded to be let out. It was terrifying and the damage was so bad and deep into the side of my car that my brother was angry.

Later, the dentist said they’d not even imagined how senseless he’d be because I had looked so calm. But I did not feel it at all. My husband could have killed me. All because of narcissism that tells them they know better. I wonder if he ever told his floozy about THAT.

So..those dentists are the ones he wanted to take the children to. Despite my saying the one a block away knew neurodivergence so he’d be better. I couldn’t get hold of his choice on Dec 7. Their WhatsApp line didn’t work. I phoned, no answer. Eventually last week the children’s father phoned them while he was in Johannesburg and no, he didn’t make an appointment like he’d wanted -having all three talking children going on the same day- he told them to phone me to make an appointment for him to take the children and have his teeth cleaned. What??? Am I an unpaid PA? It was his choice dentist, his choice to take the three all at once and he is ordering people to phone me!??

(I’m sharing this because the elders at my church have known for years about the emotional and financial abuse but did nothing except encourage him by asking him to preach and teach. And they have known since October 16 about the extramarital relationship and have done jack all. Literally. They haven’t asked how I am, how he’s treating me after I exposed him to them, nothing. Not a single church leader has cared. So I now will speak the truth for myself on my own. Nobody standing up for me against his abuse and infidelity nor against the elders’ allowing it and encouraging it and the arrogant ego that almost got me killed.)

So those poor people phoned me and I set up an appointment for yesterday. And guess what. For all his insistence that he’d rather go further away because he knew them, turns out the old dentists he knew are gone anyway. It’s some new guy.

My children came back after their appointment yesterday. It was Twin A’s first ever dentist visit, remember. They all have ADHD and autism and our girl who isn’t diagnosed yet seriously does show autism and PDA like the neuro paed suspects. But it could be mood disorder etc etc! But readers, he left all three children alone with the dentist and went out to do who knows what. Or talk to who knows who.

Never would I ever do that. I don’t think any true parent would! Micaiah sat the wrong way round on a chair and spun around and around while the dentist worked on one child. Twin A was, in her 11 year old sister’s words, “So nervoused!” I felt so bad that my poor child was scared and had no parent with her. But, she also was dancing around and purposefully making Ammy laugh while the dentist cleaned her teeth! It was ADHD central. Anxiety and fear made them even worse! I feel sorry for the poor dentist!

And why was our girl nervous? She thought the dentist would say she needs braces and that she’d get them. She had not expressed the fear and if she had, I’d have told her it’s not the dentist who does braces! 🥹During the weekend, we’d mentioned how one dentist I had taken Ammy to had said she will need braces, we had spoken of their big sister’s horrible brace experience, and somehow she took that to mean all dentists say you need braces..and then somehow believed she would get a set. Poor baby!

The first thing she yelled when she came in was, “I didn’t get braces!!”

I will warn every one I can. Run away from narcissistic men. They want children to give the illusion of being great fathers, but they don’t want to parent them.

Twin A asked if she could read a book about sloths on Sabbath afternoon. I said yes, it’s Creation, so she could learn. She took her tablet down to where her pool floatie was so she and the floatie could read together.

“Look at its claws, Mommy!”

So I told her to look at then the claws.

Reminds me of the damage Twin B inflicts on us in her anger.

My contact lens in my eye is sitting funny! My poor girl, Ammy, has a welt like this on her hand. The sting takes ages to go away.

I love my children. I will be even more of a single mom to them than I already am. Never again will I allow them to be with a strange, new, dentist alone. I’ll ask Big Bro to take one at a time for me or if our helper is around, her. (Seeing as driving and sitting are not good for me.) And somehow I need to stop Twin B from growing so she doesn’t become even stronger. Only one of these is possible.

In the meantime, I’ll enjoy how their brains work. Like when Twin B got out the water to go to the kitchen to get a wooden spoon to pretend she was rowing a boat. For a few seconds.

I lived my life as a girlfriend, THANKFUL for the narcissistic love bombing. It felt like true love, not an attempt to trap me. I didn’t even know love bombing existed when I was 18! I even mentioned it in my vows. “Why do I love you? It must be because of the ways you show me that I matter so much that you put my needs above yours. It must be the way you move so that you sit next to an open window in the cold wind, so that I am shielded from it… It must be because you care about my wants as if they are your very own.”

Little did I know that as soon as the wedding was done, that would end. By the time we got back to the UK less than a month after those vows, back to the UK where we’d BOTH worked hard and saved rent and flat deposit, the real woman he was married to made her mark. She’d stolen our money.

And he did nothing.

Suddenly, I wasn’t even a factor in his life. His mommy, living with her married lover, was the real wife. (See my channel on maternal son enmeshment.)

And I kept quiet. I had nobody to tell. My high school friends said I was too religious. My church friends weren’t close to me. I had no loving family to talk to. And I had not yet met the other sister in law again after the wedding (that actually never happened. If you watch my videos I mention how I was told I’d be a bridesmaid, had my hair undone by the mommy even though the bride -and the other bridesmaids-said my style was perfect for the wedding and I had said to leave my hair alone. The wedding didn’t happen because the families had done everything as it should be done but then last minute, bride’s family said she’s not allowed to marry so she ran away to go to the country the mommy and son lives in. But then her family arrived on the day of the wedding and because she wasn’t yet 21 which was the legal marrying age in her country, it was a fake wedding and even before the reception, her family put her in the car and took her back to her country.)

Trapped by a Christian marriage that only allows adultery as a reason for divorce, to a non Christlike husband.

I kept quiet over the years for a very long time. Not because I accepted being treated like I’m nothing, but because I was praying and hoping. After all, if you TEACH the truth surely you want to live it? He would tell men at family camps to say something complimentary to their wives every day while never doing it even weekly for me. Surely we just needed time to grow.

Instead, I finally got a reason but no way out. Infidelity. Still I kept quiet.

Until probably two years ago. All these years since 1999, I’d kept quiet when I was spoken to like I am an idiot. I never said, “Do you see you were wrong?” But that silence didn’t lead to anything but my erasure in the family as a mother and intelligent human. So I spoke.

Note in the call above in the photo for help they mention Shoprite and Checkers? These are two well known supermarkets. The company brand Shoprite owns both supermarkets. One day, as we drove past Bayside Mall during renovations, there was a sign on the outside of the building. Besides the usual shop names – Checkers, Markham etc, they had also put up a Shoprite board. I commented, “Oh! There’s going to be a Shoprite and Checkers here now!” He replied, “You do know that Shoprite owns Checkers and Shoprite!?”

I replied, “Yea. I know that. But they aren’t going to advertise the parent company on the mall! They are going to add the shop!”

Him, “I work in retail. I know what I’m talking about.”

And that day, I decided I was done being quiet. My quiet never led to humility and asking for forgiveness. It never led to confession for being wrong. So why!? Why demean myself, dim my intelligence, make myself seem stupid or accepting of the psychological abuse? No reason!

I waited. I bided my time. I knew I’d eventually get the proof, seeing as, as ever, my word was meaningless to him. Finally, the renovation of the Mall was complete. I went to Markham to collect a parcel and went down one corner then to another part of the mall. I took photos. Shoprite supermarket and Checkers supermarket.

I sent the photos together with the words, “I may not work in retail, but we laypeople have sense too. Please don’t treat me like I’m stupid ever again.”

The underwhelming reply

“Ok”

No matter how conciliatory you are, as soon as you stand up for yourself, narcissistic men lose their minds. You’re just a trophy. You’re not meant to think independently! You’re not ever meant to make them realise they are not perfect! In their minds, they are always right and your job is to keep showing them they are always right.

And so, he was right in being unfaithful over two periods in 2016 and is right to still be in a relationship with the same woman since 2022. Perfect. Even in sin. Perfect even when God frowns. And his fellow misogynistic church leaders think exactly the same way. Women are not allowed to think for themselves and be independent minded. All men are perfect. Only women do wrong.

The first time I spoke up, showed me the lack of character. No apology. No humility. No recognition of innate intellect and common sense. And I’m tired of playing the part of a silent cipher. But I’m trapped. You can’t don’t a single income up when you have university fees. One is R78 200 and the other is close to that.😩 Not sure if that means I will have to live with the worst IBS-C flare of my life until I am free. It’s bad. Really bad and as I said in another post, not going away! And what triggers flares? Stress.

Now to figure out what we can give to the victims of the fire. My children were shocked by its spread. It was small when they passed it in one direction. When they were returning home, it had spread dramatically, even jumping over the road to homes on the other side. Dunoon is a very low income township- many shacks were burning badly. Helicopters had to be called in. So to hear that they saw a weeping woman, crossing the street with her only salvageable possessions in a tiny pink suitcase broke my heart just like it broke Amarissa’s. Does she even have a job? Was she still job hunting like many are?? Did she get her documents? How will they rebuild?

May none of my pain ever make me blind to the plight of others. May my children see action where possible so they never lose the ability to empathise with those who are weeping. May they have characters from Christ.

Reader, my rheumatologist never discusses side effects of the medications she gives me. None at all. Not of the pain meds, muscle relaxants, antidepressant for nerve pain, anti inflammatory, nor the big guns we use to try slow the disease down and reduce the disease burden. Never. Except for protecting my stomach with an extra medication as I have chronic gastritis so my anti inflammatory is a problem even more for my already ravaged stomach lining. I understand why, because not taking the medication and the biologics or as in my case now, JAK inhibitors means faster death and before that, disability. So it’s a no brainer. But still…

I knew Sulphasalazine was bad for you and to avoid the sun, but in April it will be a year on Rinvoq. It could have been a year of not knowing that you are meant to avoid the sun! Why? Rinvoq raises the risk of skin cancer and lymphoma. Do you know how scary lymphoma is to me? And it’s so difficult to detect early. It’s bad enough AS itself raises cancer risk anyway and like in my case, has attacked my lungs and kidneys. But now the meds increase other different cancer risks.

Skin cancer. I was checking out my Facebook feed – if I removed you it’s because you’re not acting like a friend and what I’m currently sharing on there is only for friends -and I came down to a post in my Rinvoq support group. And that’s when I found out about the skin cancer. I already have a mole I always knew I should keep an eye on. But though I’ve known to check it since I was a teenager, I haven’t been diligent. I did once take a photo of it -it’s right by my ear so I don’t see it daily, I remember it when it’s itchy which is rarely-but I don’t know where that photo is! And right now it’s dark so any photo I take now while I remember to is going to be unclear.

The woman in the group was asking if it’s ok to use a tanning bed before she travels to a very hot island so she can darken nicely in the sun even though she knows to not be in the sun. Now that, to me as an African who uses nothing to change her appearance, was already a bad idea anyway. Tanning beds are a no no for anyone! And to darken nicely in the sun you should first darken yourself unnaturally? I had no idea that was even a thing white people do. I got plenty dark when we visited my grandparents in their mountainous village without any tanning in a bed first! (And my mother made sure I knew it, making me put milk of magnesium on my face and wear hats so I don’t turn even uglier darker than I already was.)

But I also didn’t know the skin cancer risk! I checked and yep, you are told to avoid sunlight, and if you do have to be in the sun, to use sunscreen with a high SPF. And the one I do already do, to wear protective clothing – long sleeves and bottoms to cover your skin from the sun’s rays and of course, to wear a large wide brimmed hat or peaked cap. I didn’t know.

I had been feeling guilty that I was too busy to be out in the sun for longer than it takes to hang and bring down, hang and bring down two loads of laundry. But it’s actually GOOD! I did buy sunscreen when I first heard of skin cancer decades ago when it came out that Bob Marley had it under his toenail despite being Black. Popular wisdom had said Black people don’t need sunscreen. I also knew that though our risk is lower than that of white people, we have worse outcomes because our skin tone itself stops us catching the signs fast enough and so when Black people realise they have skin cancer, it’s more advanced and the prognosis very poor. For white folk, the 5 year survival rate is 94% vs 70% for Black.

How did I not know the skin cancer thing? I can actively try avoid the sun like I actively (with my N95 mask) avoid catching viral respiratory infections! I believe it’s better to tell us of the diseases we can try reduce the risks of. I can also check my skin more often. Our skin cancer often presents differently to that of pale folk. I’ll be more diligent from today!

Here’s a random photo of me.😅

I turn 46 this year folk! I have survived. I went from praying to die due to extreme AS pain to being grateful I am alive each new day. My children need me. And though it’s hard to force a smile on my face, this mother has no choice. Not only because it’s a principle I glean spiritually, but also I have seen the damage of an emotionally absent mother in my diaghetr’s birth sister. So even when the AS fatigue hits hard and the pain has built from a busy day, the smile comes on even when the tears want to spring out instead when especially my talkative six year old comes often wanting me to download some random wild animal video “NOW!” (Pathological demand avoidance is stressful even for us who support the ones who have it!)