Author: Grace by any other name

For a few weeks now, I’ve kept a silent vigil over my eyes. dryness causes a gritty sandy feeling in the eyes when you wake up. When I went for my follow up eye tests at the opthalmologist’s, blinking between each test made no difference at all. I had no tears. En route to the rheumatologist I realised I’d forgotten to put eye drops in and didn’t have spare in my bag. So I played sad music (Christ on the cross ) and cried to lubricate my eyes.

That’s crazy! Unimaginable. And something I’m only sharing now for the first time. That’s how intense the dry issue has become.

The eye appointment didn’t go super well. To put it mildly! One of the intake questions they ask is about glaucoma and other heritable diseases in the family, so I told them my mother had glaucoma. Thus began our regular check to check the pressure in my eyes. It’s not great. And has gone a bit worse since four MONTHS ago. MONTHS. Not years, months and I’m only 45. Really??

But oh, there’s more. I have another cause of blindness thanks to dry eyes, but that one is treatable. A horrible treatment though. A treatment I can’t fathom having. Would YOU want to have your eyes clamped open while awake for an hour to an hour and a half while they scrape off the top layer of your eyes, put drops in to keep the new improved shape (my corneas’ have changed shape leading to the vision loss issue) and then shine laser into your eyes with periods of long waits between each of the steps? And then go home and be in excruciating pain for five days and nights a pain you can’t ignore unless you’re asleep but then your children don’t even let you sleep even at night, let alone day time?

Me neither.

And what have I done yet again which has caused this? Woken up and flown straight into parenting instead of self medication.

Mixed up colon cleanse meds for our non verbal daughter who is back with fecal impaction again. I gave her meds to sleep after her abdominal pain woke her early this morning and when she wakes up, the terrible way to get her to drink it – a big war that might not be won. I cannot believe we are back here so soon. For weeks it’s been building up and this one I didn’t keep to myself because. Usually, when nobody asks, I don’t answer unasked questions and tell but this worry is not about me.

My daughter’s birth mom said something so profoundly beautiful as we discussed her experience with the narc who fathered her last baby and then became the epitome of Satan himself, just in Malawian form. She said my narc will know that I have people who support me now. Ie. Her in my space with me daily.

I found it extremely sad that people I have hired are the village my children and I belong to. The lawyer’s assistant, the children’s aide who is the only one in the household who asked how the rheumatologist visit went, our outgoing helper who wanted to rip her uniform off when I was going for surgery as she was tired and angry at my attending important procedures and appointments all on my own and now our incoming helper. Ammy’s birth mother. We discussed how the children are mistreated, the things I’ve been subjected to and she noted that now he’d know that I have someone in my corner. I’m no longer uncared for in my own home. She and the children and their special needs facilitator are there. So, I’ve been sharing my concerns about our non verbal angel’s deteriorating health. And her facilitator saw it first hand when she did no OT at all yesterday. Did a big sweep of the room and items and even neighbour’s homes as she looked out the second floor window outside and across at a torn gazebo, and announced very clearly thereafter, “Get ready to go!” And left. The trio there alone was longer than her session. All because of PAIN and discomfort. And I KNEW the treatment plan we were given wasn’t good enough. I wrote as much to the paediatrician on May 25 before we now reached this week when she now has had no movement at all. Impacted. Again. I will text her helper. I don’t know why because there’s nothing she can do. But I’m sad. And she worries and is always available sometime in the day to reply.

But they aren’t there in the evenings, on the nights the children wake up too early in the night, in the busy mornings where children’s needs and medications take precedence over my own health. And I then risk my eye sight.

When I go to bed, I am supposed to point thick ointment in my eyes. But the Rinvoq knocks me out while I’m still planning on being awake and I wake up when it’s too late. Already dry through the night. Then I’m woken with a fright by a child bashing the door open and demanding my attention immediately, and my needing to give that attention so that the other children don’t wake up. The other part then gets forgotten. I’m meant to put eye drops in as soon as I awake. But I’m busy when I wake up. And a morning passes. Like now.

I’ve only put the first of five doses of eye drops in at 9am but I’ve been busy since 5am.

Due to her extreme weight gain, and the need for hormonal treatment for the PMDD Amarissa has, I had to take her for blood tests to test thyroid function, test for diabetes via pancreatic function, insulin and glucose and more.

The admin lady saw the doctor had written “adhd and autism weight gain” and wondered if she’d be ok with the blood tests as there is only one phlebotomist on duty. Thankfully, our girl not feeling much is a blessing when it comes to that. She was definitely not one to need another staff member to hold her down.

I thought I had explained adequately why she was there, but when she loudly asked, “Why are you taking my blood!?? I won’t have any left!!” I wanted to hide. I’m really not an uncommunicative mom. She knows. She has had blood tests before! But it was also funny. And cute.

We are back home. And we celebrated the first part of the anniversary of the day my son was born 21 years ago today.

They lost the sellotape hence the very obvious taping. They were so so excited. All week! I shouldn’t have told them so early.😉😅

And thus it always is and always will be on this earth.

A mixed day. Worry and happiness. Blessing and a curse.

And the vigil over my eyes. I wasn’t wrong. It’s not the “Ugh, I need a stronger prescription lens”‘decline I noticed. It was like blind spots. Darkness descending. Moments when things are invisible especially for my left eye. Times I drive and I have to try unblur the vision so I can see the road sign only 10m ahead.

My vision is slowly deteriorating and we have keratoconus and glaucoma to blame. I’m at a pre glaucoma stage where the vision is declining and the pressure worsening. But also, the dry gritty feeling with its blurred vision causes reflexive scratching when a child wakes me up and I need to find my glasses, socks, gown and get them quite very fast. Look up cross linking for keratoconus. And find what real patients have gone through. THAT is the scraping I referred to. And glaucoma? As we all know, there’s no cure for glaucoma caused blindness.🥹

So, we wait and watch and then after the procedure, we will then test my prescription strength, as obviously that too has declined, so we move onto stronger glasses and contacts too. The cross linking usually stops the blindness from the scratched cornea by keeping the better shape that they create when they scrape your top layer off your eyes and laser them after putting vit B in. We reassess in October then decide if we do it then or if my eyes retain the current shape at the very least.

Happy birthday to me for having my first ever child 21 years ago!😆

Today was a hectically long appointment for my girl, A. She’s going to have a bunch of blood tests to be sure it’s the Abilify causing weight gain, not thyroid. Iron cos she had super low iron even before puberty hit, so she might be joining me in iron infusions if the double dose iron hasn’t helped her. Also testing how healthy she is given the weight she has. And then I’ll go back next month without the little patient to discuss which pill to put her on depending on her fasting insulin and fasting glucose and all that stuff.

It was long but productive. Lots of ‘stop, look into each others’ eyes and crack up laughing’ moments. The absurdity of the behaviours where you both think, “Well, she doesn’t have a conscience yet anyway so THAT solution won’t work..” Or laughing at how home is calm until she herself causes the trouble.🫣

The doctor suggested she go to her room when angry, to calm down. But she said that’s a bad idea because she breaks the light switch, tears her clothes with her teeth, breaks doors… At least she has an accurate inventory of the damage she inflicts on the room.😬

She made me smile with the paintings she took pictures of. She’s such a lover of beauty.

And then, as always, the question came to me. I’ve put great supports in place for her, give her different places to go to and people to converse with, but where is my own support? Who is my village to watch the children and I rest on weekends or holidays. Who takes the children away for some hours so I can enjoy a quiet Sunday morning?

I told her I have no village.

And of course then she strongly commanded to have therapy as all this neurodivergence around me is stressful and draining and AS will never calm down seeing as stress triggers flares and I have nobody here to share the emotional and mental burden with and give me proper rest.

She suggested online meetings so I don’t kill my body traveling then sitting.

I don’t know. Maybe after the divorce.

Somehow, God will have to provide a circle that will enfold us all and give me chance to breathe. Because my mind is stretched out. I feel like I’m two seconds away from tearing at my hair and screaming and screaming and screaming..and never stopping.

Each appointment for each child, each bit of research for each child, each interruption by each child, every fight over something so trivial even the others complain, takes a lot from me and I’m barely there to begin with. I need a miracle. Or a village. But a therapist will have to do. One day…

Two Sundays ago, Amarissa asked her father to buy a specific type of muesli that she and the others really enjoy. His reply was, “I’m not going to Pick n Pay for that.” Pick n Pay is in the same shopping centre. But he can go get a whole bunch of weird running supplements and powders. But not muesli for his daughter.

This week, she asked for granadillas aka passion fruit. Again, he refused. He said he didn’t have money for that. But he has money to buy himself pudding from woolies with more than double the cost. I have ended up buying them a pudding to share when he gets himself one. And..I ordered granadillas for her when I needed to buy other stuff.

It’s so hard to be honest, because we are told to be silent. And for a long time, I assumed everyone had the same kinds of issues. After all, I’m not perfect. So when I’d share good stuff, it never dawned on me to share the other. So people assumed things were great. Or, not so bad that a child would be denied certain foods.

But, you decide for yourself.

In the meantime, I’ll tell you they finished the entire pack in two days. And little Miss Twin A recycled (one of her favourite words) the shell and used it as a bed for her Lego baby, ‘Princess.’ She sleeps with her next to her on her pillow.😊

When my girl asks for something healthy, I will give it. How about you? Would you break away from the ‘submission’ they use at church to starve your child of fruit? Or would you buy it yourself?

When I see the rheumatologist, besides measuring with tapehow far my back can no longer bend, she gets me to lie down on the bed and she manipulates my leg turning it this way and that and putting pressure on my hips when she puts me foot on my other calf, bending my knee and pressing down to see how my pelvic bones respond, to test stiffness etc.

After last night, I lost some of the confidence I had. Even though I knew, I didn’t want to accept.

This is simple. It’s not weight bearing. We already know my right leg can’t always carry me and a sharp pain shoots through my SI joint as it collapses. I know that lunges hurt and cause weakness after I do them. Same with squats. But stretching my glute like this has been easy. You just felt the muscle stretch nicely. Keep the stiffness caused by AS away for as long as possible.

So what happens when you can’t? When stretching the muscle means twisting a bone that’s actively Ankylosing aka fusing at the joint? Pain. Extreme pain and a dull ache radiating through the entire buttock. A sharp pain that begins that night and has become worse and stiffer and caused greater weakness the next morning.

Is this it? Have I lost yet another mode of movement? Or is it a flare? But then after a flare (a sharp rise in inflammation and symptoms), the healing process causes more bone to build in the joint or among the bone. Either one is a negative.

I am wearing gloves as I type. I am so stiff and in pain. I keep telling the children I need to shower. But the pain of standing, the fatigue I’m feeling. I can’t. So I type and hope to gather the courage. And no, a bath would be worse. Sitting on bones that are swollen from inside is painful on cushioned chairs. Imagine on a hard bath.

Yesterday when my attorney sent evidence he’d filed my divorce plea, I prayed. I don’t know how my future will be as the disease causes more and more disability. I have my son for now as he studies, but if he gets a job far away, who will help me care for the children? I prayed for strength, for the enemies who rejoice when families break apart (my mother in law who’s seen off two daughters in law already cos her precious son is also a philanderer and she’s happy to have his undivided attention) to at least know I cut the cord. She must know her son is not admired by those with morals and his cup does get full just like it will or has for the Heavenly Hand also holding a cup. I prayed for wisdom and strength to fight for the monies he’s given away instead of paying for his children’s home (mortgage ). I prayed for the justice my friend and I have not seen in the church that claims to serve God.

What a scary time in many ways. The physical pain, debilitating and making me wonder if I need to get my walking frame from the garage is unbearable. Nothing is taking my mind off it. My fingers are stiff so I’m typing with only one finger.

I hate that my range of motion is being controlled by my disease, not by my hopes.

I’m being stripped of my abilities bit by bit.

And that’s more frightening than getting a divorce and being even poorer than ever. Medical costs are extreme! Very bad. Very high. But we will be ok just like others who have gone before me are. I don’t know them, but surely somewhere there’s a constantly in pain homeschooling mother of autistic and learning disabled children who is divorced.. in Africa without the benefits (welfare) system of the country that had colonised it. (UK.)

Right?

Oh my word, how I hate Sjögren’s disease! Because we don’t have enough saliva, our taste buds suffer. We either have distorted taste where we don’t taste as we should, or even NO ability to taste at all! That’s been my problem.

I used to eat vegan gluten-free pizza maybe once a month. But now , they all taste disgusting. At first, I thought the stores had changed how they make them… Then I found out what the lack of enough saliva does.

When people read ‘dry mouth,’ they have no clue the ramifications. And when I say “people,” I mean ME!

The only thing I can still taste properly is chocolate.🤦🏾‍♀️ Do not ask. Everything else is just to be endured.

That was my introduction to how I almost threw out a whole big pot of pasta. I made it with pesto but the taste was AWFUL! I used to enjoy basil pesto. But I was convinced I had made such disgusting food that nobody would eat it and more importantly, it wasn’t fit to be eaten. It would be punishment to make them eat it.

But first, I asked Amarissa to taste it. I wasn’t going to eat it as it’s wheat pasta, so I figured those who would, should. Just in case. My brain is so slow that as I type, only now am I thinking, “But surely the fact that she ate it when it was on the sides of the blender when you mixed it with spinach, the fact that she unscrewed the bottom of the blender to get more of the pesto from the base beneath the blades was proof enough that she she liked it! What’s wrong with you!?”

She said it was great.

But I wasn’t sure and asking my already finicky others who don’t eat all food anyway wasn’t worth doing as their tastes don’t reflect those of the majority. I waited for big brother to get back from campus.

He loved it.

I was relieved! I’ve been having back spasms as my body deals with worsening AS pain and my muscles suffer. To make a whole new plan after 6pm and a busy day straining my body was not going to be cool.

But man, I can’t trust my tastebuds. I see why I’m shocked they love the soup I hate when I taste it! It’s not them. It’s me!

PS. My attorney is getting ready to serve the divorce summons. The sheriff has ten days within to do it. I did not marry to divorce. Alas, I married someone who doesn’t think lies are bad. So he lied on our wedding day and thereafter. It’s weird. I’m asking the children for their maintenance plans -when you’re older than 18, you make your own requests, not your parent. And looking at them and editing them. They’re so sweet in how little they think they deserve. Eg R80 worth of data a month.

I’m sharing this part of the process because I have nobody who divorced so I didn’t know how it worked. Now the next person dealing with an unfaithful wife or husband knows how it goes. Give a broad overview of the maintenance you and the children expect and it will be added to fhe summons. So you’d better start looking at your costs. Not easy, because you have to separate YOURS from the grocery you buy for everybody.

Little things that took me almost a week to put together. When you’re creating your exit plan, start looking! I told him I bought a pressure cooker and the microwave now, in preparation for being divorced and not having the money to buy one thereafter when we now have to pay for yet another home’s rent, water etc. He didn’t complain. Which is good. I’ve eaten supper on many days only because Woolies has ready made food and I don’t have to stand over a pot when already in pain. (Seeing as we eat separately with my meals having to be IBS friendly.

(ETA I posted a lie!! I got a bladder infection and had to quit! And then I got an abscess in my groin and had to quit again. Wow, my memory is SHOT!)

Our ausome non verbal angel and her traitor domestic worker who is leaving next month.

The nerve to be leaving to take her children from grandmother and raise her herself! Who cares that she misses her children and they need her?😉

It’s been hectic! AuDHD lives are non stop as it is. But our ausome non speaker has never been well since December when her symptoms began, then hospitalisation, then discharging with incomplete emptying but her hating the medication to help her out…And two flu attacks back to back. Not a cold, flu. She’s not rested. Which means those who medicate are trying to get even more medication into her -and failing because she clenches her teeth together and how do you fight that?

Once again, this disorder deserves to be called a disorder in the way it manifests in her. She has no understanding that the stuff I’m giving her is to help her. To us, it tastes ok. Ok one is horrible, but before the flu she was allowing me to syringe the not tasty one throughout the day into her mouth and refusing the other completely. When the first flu bout came, that ended. She now takes almost zero meds without a fight, or it not happening at all.

The children came down with it too. Then they started recovering, though our current big girl of the household- seeing as big sister is away studying-was still coughing.

Their dad came back with a bout of the flu. And this one was bad. He kept complaining, I kept telling him to then take anti inflammatory pain tablets! He even went shopping with chills and sweats that made his clothes wet. Then the children fell ill. It was and is sad – sore throats, headaches, respiratory problems, coughs, horribly blocked noses, nausea, weakness, fatigue, body aches, painful lower limbs, “I can’t walk. I think I’m turning into a grandma” my poor six year old wailed as I had to put her on my back and put her back in her bed.🥹

It’s been the worst ever. The only ‘solace’ is that it’s not just us. I’d read an article about how flu season started too early this year and is worse than other times according to suffering patients. I was so relieved that I wasn’t ignoring some crazy pneumonia or TB! It reminded me of some other time I started doubting my ‘Florence Nightingale’ routine and thought maybe I should have taken them to a doctor. I knew though that there’s no actual real treatment they can give that I can’t, but for a day, I thought I was ignoring pneumonia. Then the next day recovery began. I thought I could be treating a strain of the flu when it’s something else completely…

But then three got it. And my anxiety grew even as I sighed in relief. Less time to rest due to treating everyone and also giving their normal meds, means less rest. Less rest means lowered immunity. And to fight AS, I’m already on treatment to lower my immune system so it stops fighting my body when it should only be fighting disease and not me! If they get it, what if I get it? We can’t afford that, not NOW!

Nobody wants the awful flu the children have. Nobody wants the flu when they are the only caregivers the other patients have. I’ve been there before. I made the GP angry because I ignored how bad I was because I was worried and helping others who were actually better off -good thing they don’t have fibrotic lungs. I also know how desperate one feels when they’re suffering but still have to force themselves. I live it daily with AS. But if I get sick, I have to go off the AS treatment that reduces the severity of the disease so that my body can try fight the sickness. That means double torture and still no rest. Stronger AS symptoms added to the flu. Noooooo!

But also, we’re about to do my bloods. My red blood cells have been decreasing each time. We need them to stop that! We need to know exactly how badly Rinvoq is impacting them. We need to test me while I’m on it. We need to check that my liver is still ok. Two more members in the group had to quit and try a different treatment because it almost killed their livers.

This AS patient needs proper info so we know the way forward.

And it’s anxiety you hold inside. You don’t tell your children. You just try bottle it up and smile while you hope your check up hurries up so you can know you got tested and seen while on your meds.

I went to fetch ironing and the lady handing it over had the flu too. And like my children, she’d gotten better and then WHAM it returned with a vengeance. It’s barely winter. It’s clearly going to be a very long one.

We’re in for a tough ride. But for now, in the AS world, we thank God that a year came and went and I didn’t have to go to hospital multiple for IV pain relief as I did in the previous year!! Here’s to more years of Rinvoq! Please. And no flu so we know if it’s harming or only helping reduce symptoms which is good enough for me!A

As for Vi and our ausome angel outside…

The whole thing will shake like it’s going to be blown over, and she won’t care. So we take it in turns to go keep her safe for her ascent up the slide. I must say, she’s grown stronger! She couldn’t climb up before. Now she can -depending on the shoe! Her arm strength has improved! 🥰But wow, doing this when winter is starting…🤦🏾‍♀️

She laments when sickness comes twice to visit the children and she lamented yesterday despite her own sickness. She’s one of those who has internalised how horrible life is for neurodivergent, sensory sensitive people anyway, without adding the extra sensations that come with being unwell. I appreciate that!

First, our non verbal baby girl has been unwell since December and hasn’t gone back to stable yet. That’s a very long time for a mother to bear an extra worry. Include the hospitalization after multiple Trauma visits and you have a mom who needs a rest for her mind. I wish I could forget my worries about her just for five minutes.

Just as the children were recovering from a very terrible and long lasting flu, their father got sick and passed on a different kind of flu. Lots of malaise, cough, nausea, fever and chills. In that state, he insisted on sitting in the car with our non speaker even though I begged him to NOT do so. Our big son would sit with her all day because he has his phone and it saves him from other chores, so can her siblings. But I think he wants to play victim to his floozy -that’s what the psychologist thinks is the reason he sent her confidential assessment of our daughter to the floozy-so he sat ‘with’ her in a normal five seater sedan and she fell ill all over again.

Yesterday, it was her twin’s turn to fall ill.

Micaiah took a blanket and went to lie down with her to keep her company. And they say autistics have no empathy!

But then, he too woke up sick today. while she woke up worse than yesterday. Fever, chills, malaise, coughing. I knew it would be bad when she didn’t come out her bedroom. She is usually the one who wakes up the rest of the children, coming bounding in cheerfully but not as cheerfully for me and my cold feet, wanting a snack to eat. I went to her room an hour and a half after only one child had woken, and she was groaning. That was heart searing. Never should a little child need to groan.

All you see are heads and blankets.

Guys, I only rested at 15:20 today. I’m paying for it big time! I lay down an hour and ten minutes ago for ten minutes but those minutes did nothing. I haven’t felt this much pain in ages! It’s like Satan is squeezing my upper skeleton in a vice and making me feel as cold as if someone poured ice into my swollen bone marrow.

I went out to make myself some tea-first ‘meal’ of the day at 16:20. But then got distracted when I realised it was time for Twin A to get her pain meds. Then the next time, it was time to make a beverage for Twin B. Motherhood never takes a break! But the drinking thing gives me one little positive!

She has drunk properly for the first time in three weeks. She’s still coughing and miserable inside herself so she couldn’t handle the extra sensory stressors (New bird with strange noises in a different room) at OT today, but she drank three proper servings of liquid! Given her bowel issues especially, I am so relieved. You can’t force a strong child to swallow. It’s terrifying watching a child starve or dehydrate. And knowing hospital will see them tearing out drips and tubes like a precious hospitalization. Maybe next week I’ll be able to get more medication into her and try fix her bowel so she doesn’t go to hospital again. A mom can dream! Amarissa also appreciated how amazing it is that she drank!🥹

Big sister is ok in Pretoria, big brother was doing a week of online lectures. They alternate between going to campus vs learning at home. And he is impressed! Remember how he flunked last year because he was playing games, wasting time on Twitch and Reddit day and night? I take his phone at 20:30 and laptop at 21:30. No staying up anymore and being sleepy during the day. I make sure nobody disturbs him during the day and am after him to study when the evening starts.

Also, the lecturers here in Cape Town are also very different to the ones in Pretoria. Pretoria lecturers were awful! Didn’t pitch up after students got there, only spoke for ten minutes of a three hour lecture…Our Cape Town guys are all South African and know what they are doing and how to pronounce words in English. The lecturer for one course warned the children that his subject is difficult so they can contact him via WhatsApp any time if they become lost and confused! The lecturers actually use the lecture time, mark tests fast, keep a record of attendance and are passionate about what they are teaching… And that has motivated my boy too. Guys, he’s turning 21 next month! What will I call him? He’s not a boy anymore!

I’m happy for him.

And Ammy? Miserable and sad. Twin A might as well be her twin, the way she needs her. She even went to the bedroom to read to her but poor little mite couldn’t focus so she stopped. “I don’t care if I also get sick! I miss her!” was her cry when I reminded her not to breathe in the same air coming from her sick sister.

So, she busied herself making this for M plus N (Micaiah and Naynay). Naynay told me, “I think she really wants me to get better! She gave me this!”🥹

I hope for better days for my children. I hope for less pain for myself and more strength and TIME! I’m meant to be working on what I want for divorce maintenance but he has always done all the insurance applications, he pays the eldest two children’s fees, buys them textbooks even when they are the wrong ones…How will I get time to study everything I have to do make up something useful for the attorney!?

Hmmm…

Doing my Ankylosing spondylitis ‘slowing of disease progression ’ exercises is becoming more difficult. My one side does not agree to go down much. And doing normal exercise is becoming more frightening. After a lower body workout, I cannot walk properly at my hip and right SI joint. It’s like I will collapse because my legs don’t want to move. Not muscle fatigue, but the actual pelvic area is stiff and weak, shaky and doesn’t obey my commands me to carry me and walk to the bed!

For this bridge above, I rely on my left leg to hold me up. My right one just sinks down. Doing marching bridges-where you’re basically walking while doing a bridge, means a sharp pain when my right leg is holding me while the left knee comes up.

At the same time, I hate that I am in so much pain that I cannot exercise (normal exercise) as much as I want to. By the time night time comes and allows me to -I asked the children’s father if he could do his 5am treadmill running in the evenings as the time change doesn’t impact his body’s ability but it hasn’t happened-the pain has built up through the day and I’m too fatigued and sore to do it. I take pain meds but they don’t reduce the pain.

I wonder if the children were in school as the rheumatologist said, if I’d be in as much pain by night time. One evening this week as I was writing out the work the aide was tk do, I ended up writing, “I’m dying. Just do the next sections.” (Usually I look at weak points and create or find worksheets to reinforce the areas Amarissa and Micaiah struggle in that he deals with.)

But more than that pain during exercise issue, is the reduction in mobility of my right side that is worrying me. When I am fused, will I be able to bend to sit? Will my leg give way even more? Will I actually fall as opposed to being able to stop myself from falling when it gives way now? It’s been years. How effective is the Rinvoq in slowing this process down? But, when you are fully fused, you feel no more pain. Which is worse? Suffering no through the day and night? Or being permanently unable to move that area? Why do I have to ask myself these questions? Why does AS exist?

Any kind of lunge is bad for me. Doing a side plank on the right side is painful for me. It’s like afterwards a nerve is pinched and making me numb so I can’t feel my leg and stumble.

This is all insane and terrifying. How will I survive when I’m living with older, stronger children? Already, our non speaker has crazy strength. Remember the very experienced paed who’s never had a child as strong as she is yet she’s only six!? One mom’s now 21 year old has broken her leg. What happens when she’s 10 and twists my neck like she tried? Especially given the fragility of AS bones?

When my father started getting super sick, I took him for bone scan way before I realised I’d also need one. The amount of inflammation in his body was horrific. My doctor friend who gave him the lifesaving prostate injection, bringing her White Afrikaner female self to Gugulethu to administer it, prescribed diluted morphine for the pain.

Y’all know the pain where I tell God I just want to die? He’d lived it for 40 years, always telling people it was a car accident that caused his back and leg pain. Like me, he also couldn’t sit in church. But he couldn’t even barely handle lying down for the bone scan and I knew then that it wasn’t the accident even before they sent me the report. (Another reason I’ll never have another injection into my spine. Lying there on that hard surface for temporary minimal gains…)

He suffered. His shoulders fused by the end of his life, so two men had to try help him get dressed for my mother’s funeral. It’s that fusing that scares me. I don’t have the luxury of people helping me. I am the one helping my other people who are getting stronger and scarier. She doesn’t want her nappy changed sometimes, I’m not even meant to change it nor dress her anyway… But sometimes I have no choice. A live in helper would be a dream! But until then..

My father gave even when he should have been resting. Their ‘caregiver’ would disappear and they’d not tell me until weeks later when he wants me to track the person down to return his car. And so my father would be the one washing my mother’s soiled bedding. (She took months to accept adult diapers but with nobody to change her anyway…) He’d be the one I find don’t ironing when I take grocery to them. He’d also be the one telling me not to be crazy and buy them new dish towels when theirs are fine (full of holes!)

I am glad my father is in no more pain. His other children from his first wife took his morphine away. Gave him herbal pills instead. This is the couple where the wife told me I’d be healed from Ankylosing Spondylitis if I saw her counselor who traveled IN HIS MIND to Ukraine and spoke to Zelensky🤯🫣Where were they when I was killing my back sitting in Groote Schuur hospital queues for his cancer appointments?? Where were they when I paid R13000 for a bone scan for him?Africans and morphine! Were they there when I sat with him discussing with a doctor that we’d need to cut his testicles out to stop the hormone driving the cancer? But they were there to remove the one painkiller that helped him move around with less suffering.🥹

Given by the very same palliative care, cancer specialist doctor who helped him have many more years of life and allowed him to wait the long hospital waiting times for THAT surgery. “Yes,”my 92 year old father said, “Cut them off, I don’t need them.”

If I could surgically fuse my SI joint like many in the States are doing, AND be guaranteed it would work, works for most in taking that pain away, I also would tell them to cut me up.

And lastly, I am also glad my father is dead because only now will I have no pressure on me. I have a sibling who’s a terrible drunk who makes babies everywhere. Old church members have seen him with his latest floozy at the public clinic, having a pregnancy check up. I have nieces and nephews I don’t know about. His wife said she wanted to divorce him. My father often told me, to phone her and tell her not to divorce my money finishing, adulterous, ‘does he not have STDs?’ brother.(She has a child my age that she had as a teen. Why would I tell a grown woman what to do with her lousy husband?)

Ironically, she had been in the UK all those years so it was the children telling her about the women they’d find, and the beer bottles. He told me last month that she’d back in South Africa and living with him. No comment.😅My father would have been happy!

And my mother would be firmly on the cheater’s side too. After all, my solely caring for the children day and night and worse so when their father travels, wasn’t taxing. She would feel sorry for him when just once a month I’d leave the babies with him and take grocery to my parents as a form of me time. I did nothing in her and his mother’s eyes. Apparently keeping children alive, fed, taken to hospital, EDUCATED, is nothing. And so she too would have come down hard on me like my father would have.

Now, I have sister friends who get it. One of whom regrets having ever told me NOT to divorce back in 2016. And no contact with relatives to pressure me. No contact with church elders who pressured me last time to act romantic towards their cheating idol. “I used to admire him…I still admire him.” Good on you, you should marry him then, is what I should have told him.

The irony? He was upset when his wife received birthday money from a man-the man’s wife asked him why his wife was talking to her husband and receiving gifts. I think it was R200 airtime . But somehow, my situation-“It was just a loan!” (SSaid and ‘repaid’ after I found out about the R19500 a MONTH to his floozy) evokes no anger. Sexism is …

I see why more women now prefer to just worship God alone.

This is the part I cannot and do not and never will, understand. This is the part that makes no sense to me and doesn’t allow me to bridge the gap between me and others. It is the thing that doesn’t allow me to be as giving (of my life) to them as I am to one who does get it and doesn’t leave me baffled.

There is a book by our founder, called Desire of Ages, a play on how Christ is the desire of all nations, according to the Bible. It is a book even the most disinterested pastor sometimes tells church members to read. It doesn’t have any of the practical steps one should take like Paul’s writings had so it’s a ‘safe’ book for them. It doesn’t talk about who should and should not be a minister, a member, a missionary…

But it’s the very book that changed my life when I was 16 years old. It is the book that opened my eyes to the magnitude of God’s love for me. And because I knew how much He had loved and sacrificed for me, no sacrifice was too much. I would give up anything to tell Him, “Thank you!”

But why don’t our church members do the same? We have so many very plain commands in the Old and New Testaments about how to show our love, show Whose kingdom we are aligned with, how to be “holy priesthood and a royal generation.” But we don’t obey. We are not holy in our habits and choices. We are just meh. There is no line of distinction between us and the world like there was between Israel of old and the world and like that between the early Christians vs the rest of the world.

Why? Why don’t we do what we know we should do? Why isn’t Christ’s sacrifice worth our dying to self? Why do we act as if the Word is just a bunch of suggestions?

The current chapter my friend and I are on, in the book, is one I hate. The older I get, the more painful Christ’s emotional, mental Gethsemane experience becomes. The harder it is to continue reading the rest of that awful evening and the more heartbreaking it is to know that not only are many ignoring His cry, “If you love me, keep my commandments.” (All of them, not just the ten.) but they are actively teaching others to also ignore Christ’s call to obedience and reverence. I hate that we don’t care about anything that was written in the New Testament, let alone anything written later by our founder that would show the world that we are His.

At the same time, this passage is one I always hold onto. I love it. I mentioned it to my step mom in law recently. If Christ the Creator could want sympathy, how much more do us weak ones not deserve sympathy and love? My point was that to feel abandoned by those we rejoiced and mourned with but who don’t do the same for us, is not wrong. It is normal. It is expected that we’d assume those we loved out loud would be as loud in loving us back.

Their silence is deafening.

The trivial, light conversation when there are deep painful ones is painful too.

So, like many others as we age, I continue to sift out the people who only have a ‘surface only love.‘ I want deep connection and real conversation. I want heart to heart, and two hearts need to be united in order to understand each other fully. And that can only happen when your principles, habits and values are guided by the sane Person.

I am so thankful that I do have someone who sits with me in my moment and doesn’t insert herself in my tears. She knows I sit with her too and so she gives me a chance to get sympathy just as I give her a chance to get sympathy from me.

I need that in this trapped season of hardship and worsening AS and Sjögren’s suffering. I need it as my children’s situations worsen in many aspects or the future becomes more dire, as the light at the end of the tunnel grows dimmer. And so, though I will never understand those who spit in Christ’s face after all He went through for us, I sure understand those who want to give up even more, for I do too.

I have this constant feeling that I owe Him so much MORE! The gift He gave was all of heaven, an eternal peaceful life! What can I give back to Him, stop doing that will thank Him adequately? We wrestle with the questions together, as we read His word, together. I am grateful.

I spoke to a pastor who has been a lawyer for nine years this year. One question he asked was about finances. I told him that I’d wanted to get a real picture of our financial position since last year but the guy has refused to send me bank statements. Totally refused. The most recent time I asked was Friday, and then yesterday morning. All I keep trying is a breakdown in Excel of how much our household is using.

I told the gentleman that when I asked what his medical aid costs each month, seeing as he took the children and I off his one and separated himself from the children and I, the answer was, “Look on the internet.”

He asked, “Did he ever respect you!?? Who answered like that??” I told him that that had ever been how I’m spoken to. In 2023 I started asking if that’s how he also answers his boss and stranger women. He asked me if I want to start a fight.

So yeah, it’s a no. He doesn’t respect me at all. That harlot will see his misogynistic side but she’s a gold digger with him for the money so maybe she sold her soul for it like she sold it for him.

I am tired. I am wide awake at 3am thanks to a non sleeping twin and the back pain, arm pain, hand pain, hip pain, foot pain, pelvic girdle pain and a pain that’s at the base of my SKULL making wearing my headscarf painful, are all also “awake!” I just need to be alone. Yesterday morning I killed myself, straining my body taking care of our children alone while he got his endorphin rush. I have asked him to at least exercise in the evenings on some days so I can exercise in the morning and he take care of the twins when they wake up. Or just so I can rest my body while we wait for the morning AS stiffness and pain to depart.

It hasn’t happened because.. only he should get exercise, clearly. By night time, I’m in too much pain to do it after they all eventually sleep, which I’m only sure of after ten pm.

I might as well be a single parent in my own space. Then there’d be nobody replying in an uncouth manner to me and I wouldn’t be woken by him going to go exercise while I wait for the door that will open and a child come galloping in after the other woke me already in the night.

I’m praying for relief and a miracle. I can’t take this when it’s all piled up like this.

Yesterday, I came to the bedroom to turn the humidifier on for my Sjögren’s dry nose, throat, eyes, mouth, skin and lungs. The dry cough it had been producing is awfully painful. I then also got some information together for an autism dad and tried to lie down and rest while doing that and also editing my Bible story video.

When the children came wanting something, I had to get up and as I drew closer to the kitchen, the smell of burnt pumpkin assaulted my nose. I’d forgotten I was also cooking😩 This happens often. I multitask so I can try get things done, emails sent, lessons planned any time the children are not interrupting me, and Vi has saved many a pot. This one made me sad.

The smell was worse than it looked! She saved the food?? as Shay’s, But what made me sad is how last week when the father was on leave, I had been cooking and then Little Miss I Pull You Everywhere, had taken me up and down. I opened the bedroom door and could smell the burning food?: P Thanks zzzzzzz n sa ya q?. He was right there. But he hadn’t turned it off. And it truly was burnt. So I had to start afresh with the cooking and it hurt. Hurt because there was an adult right there but they didn’t care to help, because it and it hurt physically.

It’s better to suffer alone while alone than to suffer alone when there’s someone who is meant to partner with you in the home.

In the words of Queen ‘mmmm, “I want to break free!”