It has been an interesting day. Typing this at 20:56. My husband asked if I’m “at peace” with my worsening situation. See, yesterday we went for a walk and he had to stop me. Make me stop and realise…I was panting. We were walking slowly (too slow for my liking!) yet I couldn’t converse and breathe normally up that very mild incline. So. In light of that new situation, yet another sign of declining lungs, he asked if I’m at peace with disability caused by AS moving forward, If I’m ok with never being able to hold (carry) our future grandchildren when we see them. I told him I don’t even know that I’ll be alive to see any grandchildren anyway.
It was a sobering day but I didn’t feel sad.
So this next event brightened up the mood considerably!
Here’s the thing. I talk to my girl all the time. The males and my teens don’t get why I’m so insistent on talking to her. Slowly, short sentences and using lots of repetition. The teens don’t get any feedback from her, and they assume she barely understands what they do say. My son said as much when I asked him if he’d warned our girl in advance that our new helper star would be caring for her and her three siblings while I took him and his teen sister to their exam venue.
He replied grudgingly. “Yes, I told her, but I don’t think she understood anything I said anyway.” I told him that that didn’t matter. He just needed to keep using short sentences and speaking anyway! On the way to town where their exam venue was, I told them about an autistic who started speaking very late. That’s when I found out my son has given up. He thought my daughter had no chance of ever using speech. Ever.
I think my husband also felt the same. This evening, while they recited the fourth commandment, our girl chimed in, “Six days shalt thou labour and do all they work…” As clear as a bell!! A very loud bell! Her twin sister- who usually keeps quiet- decided she didn’t want to be left behind, so she yelled the rest of the verse loudly!
It was crazy! It was a cacophony of sound! It was BEAUTIFUL AND GLORIOUS.
It was a fitting way to end the day while thinking of how my husband saying, “So…Maybe there is hope for her!” I had thought it was obvious to him that there’s always hope. Till the day she dies, I’ll hope. ☺️
I know that it’s wonderful that she recalls the words and says them in perfect timing. It’s amazing even if it’s pure echolalia.
I’m not sure what to do. About 19 years ago when we first moved to this area, a White man (my husband’s boss, actually), told us it’s very closed up. People like us aren’t exactly welcome. And I’ve certainly seen it in some groups.
But I never figured that it would mean that they don’t want our money either. Which it should have. Look at how hard it was to find a rental because people didn’t want to rent to Black people. Not even to sell to them! What apartheid nonsense is that!?
I’m stuck. Terribly stuck. I’m in increasing pain. I can’t drive far. But our occupational therapy options are nonexistent. One didn’t reply when I told her we couldn’t afford her services but would contact her when things improved. No acknowledging that she got my reply. Plus, she talked down to me like I’m a dummy. But I had been willing to ignore it for my daughter’s sake. Also, she at least had the grace to admit when wrong. (I’d told her that I believed my daughter had a visual processing problem and she disagreed with me. But then while doing her assessment, a visual area was touched on and it led to her adding a visual assessment that indeed confirmed my fears. But.. No human ‘soul’ in her and no written report after the assessment.
Another one, she would want to be paid YESTERDAY, but would make us wait MONTHS for the report. Hardly fair! And always an excuse, no apology.
I contacted one. This one, I’d actually been sent to by our son’s neurologist. But back then, this OT gave me to an OT who didn’t even have training in what the neurologist had pointed out needed therapy. She gave me to the therapist above who twice, took MONTHS to give reports🤦🏾♀️I emailed this year asking for help for my daughter.. silence. Given her disinterest years ago, and the disinterest now, maybe she only wants clients that look like her.
I contacted another one. I told her I was not available on Tuesdays (only three of them, specifically) so we need a different day to start the process if we were to begin while my first daughter is using more Tuesdays to be taken to Somerset West. She suggested..TUESDAYS!! I replied that the next Tuesdays were out.
Silence. And even the Tuesday offer came because she had gone ghost on me after I replied to her about the children and asked for a session! I received no reply to my request. I ended up re-sending my email that I had sent. And to that, she chose a day I had made sure to tell her I couldn’t take 🙄
I truly don’t know where to look for help for my daughter. Her executive functioning skills need improving. Same with my son. They need those foundational skills.
I am so, so anxious! The teens got A and B for their first set of AS level exams and now they will be doing their last set. If they pass, they’ll be DONE! I can’t picture what that will be like.
They’re extremely sure of themselves while I’m nervous. Very nervous! They haven’t flunked any past papers that we used for practice, but my son struggles with Comp Sci paper 2, only getting 50’s till the last paper he practiced. That was with having found videos from his previous year (one level /grade down) to make sure he knew the foundational principles before I got him more of this year’s AS level videos and it helped- so he claimed. And my daughter didn’t do super well with Biology 1 at the start of our prep season. Hoping they do as well as they did with their last practice! I’m nervous, did I say that??
I hope we are done. It will be a long time till we find out! August 20 something!! In the meantime, we continue with our university applications. And she will also apply through Mediclinic for their nurse training too.
Life is good.
I am limping a lot these days. My respiratory rate is too high. As in, “You are sick” high. It was like that before my bronchitis, now just worse. Normal is 16-20. Mine has even reached 30 on some days and this is while asleep. Or just sitting still. My average is 25. I’m breathing faster than I should be. Which makes sense. Your lungs do that when they aren’t passing enough oxygen to your blood, which my diffusion test already proved anyway.
My blood oxygen once went down to 82% this week. Which I wouldn’t have known till my husband traveled for work and used his ‘pocket’ money to buy me an Apple Watch that measures your blood oxygen levels.
So, I’m still dying.
And my bones are bad. Real bad. Can’t find a comfortable position. And I haven’t heard back from the rheumatologist about our start date which matters because woohoo!! I don’t have to plan surgery yet! My hand surgeon said we will give my nerve four more months before we operate. He is hoping it will settle down. But if not, the surgery will be “bigger” and worse. Which I already figured
Life is good.
I was limping along coming from the orthopedic surgeon when I told my friend about the good part. She and I have always mourned the twin bond my very talkative twin, Neilo, wants to have with her twin sister. (By the way, she doesn’t want us to wash her hair. Now I have two four year old girls who don’t want their heads touched. HELP!) There are times Neilo just wants to hand her something (not even a hug or holding her) and she will refuse.
But in the bath, Reo slides forward till she’s almost squashing her poor sister.☺️ And yesterday she happily allowed Neilo to pour bath water on her calf. Neilo was so pleased that my heart almost burst 😍
Today, I caught them taking spoons for their breakfast. Both girls standing there with the kitchen drawer open. Each had more than one spoon in their little fists already! But Neilo took some more and handed one to her sister, which she took and kept close to her chest. Man!! This is what brings joy. I want to live long enough to witness 40 more years of this!
And you know what? Yesterday as I hugged R in the kitchen. She hugged me. I knelt down to squeeze her tight and she rocked and hugged my head tight. ☺️ She played with my hair, she was so loving. The moment was long. Who needs spoken language during such moments anyway?
I don’t need to hear “I love you” when I can feel it.
And so, I carry those moments in my heart. Nothing can take them away. I may lose my breath walking up to my car, but I’ll never lose that moment.
Life is good.
And….For the first time ever, I left the four little ones in the care of someone else. Someone who’s not one of our family of eight! And it went well! My minimally talking angel laughed and laughed at her. And allowed her to change her diaper while my very talkative Neilo was in a rush to get us out the house so she could be alone (with her three siblings) with Aunty V. 😅”Bye, BK! bye Ella! You can go now!” I hope it works out. Then at least next year I’ll have a help when the teens go to university. Holding thumbs!
Oh, I didn’t tell you? We felt the teens should focus on school during their exam season, so I hired someone to do the housework last month. Reo loves her. That’s our litmus test. If R loves the person then we are fine because she’s the hardest to please. Also, she herself loves the children and doesn’t treat R like she’s got no brain. (Thinking of the woman I tried who would walk right past her or behind her as if she’s a chair, while smiling at, or talking to the others.) This ‘aunty’ understands that behind the ‘non-speaking autism’ is a normal little girl.
I came home and she was laughing and laughing. She had laughed when the aunty changed her diaper too. And to think how worried my eldest was. He was extremely stressed about my leaving the you n er four ‘alone’ with aunty Vi. He thought our girl would panic or run away. But nope, they had the typical hiccups we’d have, and then got along famously.
It’s my war cry for today. I’m figuratively on my knees- heart screaming and my invisible eyes weeping. “I CANNOT DO THIS!” In fact, yesterday morning, I mistakenly said it out loud, “I can’t!!” And my son, sweet Micaiah asked from another room, “You CAN’T!? What can’t you do?” Oops. I hadn’t realised I’d spoken out loud. So I explained that my fingers weren’t obeying me. I couldn’t open the blister packet and get his tablet out. At the same time, AS fatigue was so strong that I felt I had no energy anyway.
“I can’t!“
My shoulders are steadily getting worse. I handed Amarissa her tablets while I gently raised my arm, and we both heard my shoulder, “Crraaaccckk!” And it stopped moving. For a moment, my arm wouldn’t go higher.
“I can’t!”
Today, I had so much I wanted to do. But just bringing down and carrying bits of laundry (No lifting heavy things for two weeks after surgery) caused lots of uterine pain and I had to clamber into the bed-womb and bones all screaming,
“I can’t!”
There’s a spot on my shoulder where I rub, and I can feel the sore spot. It’s not in the joint. It’s not where the night pain is. It’s just purely along the bone. When I turn my back, I feel my neck creaking, getting ‘stuck.’ I walked into the pharmacy at 9am, hours after I woke up and yet my legs were still stiff. Not normal. I walked as if made of… I don’t know. Like a fictitious zombie would. I felt shy. I don’t want pity. I don’t want to be noticed. It’s as if my leg didn’t want to move. Didn’t want to obey me. It was telling me,
“I can’t!”
I can say for sure that my right SI joint didn’t benefit from the infiltration. They’re charging us R2500 for that!🫣 (Oh, I’m mentioning the prices because there are people I know who are saving up to do things privately but don’t have medical aid. I’ll be transparent.) I also owe for my blood test. My husband thinks I might even be worse. Yet another reason to never try again!
Speaking of blood test. My kidney function still says kidney disease stage 2. No improvement there. It actually decreased by 4 units. But my liver is still fine.
We have a slow burning panic going on. It’s not only me. My husband is also itching for me to restart trying to slow down this stupid. He was asking what the hold up is, asking if the they can’t just write the script and we see if the pharmacy would refuse to order it without medical aid approval. I had to go collect some of our chronic medication on Sunday so he drove me. My pain and sinusitis meds and my daughter’s ADHD meds, heart meds. Though I had picked the option to STOP the Enbrel, they’d ordered it anyway. He was tempted to pay for it so we are “at least trying something while waiting for the new medication.” But I still have three in the fridge. Surely medical aid will have agreed by then? Surely the panel will have sat by the time six weeks is passed, right. (If I need arm surgery, plan to give myself two weeks after the other op before going in again for the ulnar nerve op. And then after that op I need to wait two weeks before I can resume. Surely they’ll have approved and I’ll have ordered the new injections? If not, I WILL use the Enbrel in my fridge while waiting. This disease doesn’t wait. I saw yet another article about people dying because of crushed throats when the disease bends them over. I’ve seen people not even knowing this disease can do that- make you bend and unable to move your neck. Poor woman was asking in our web group why she’s leaning forward and unable to look up or to the side. 🥹”If it’s part of the disease “or something else as the forward weight makes her stumble and fall forwards sometimes. I wanted to wait till after the teens are done with exams then have my ulnar nerve surgery… But the numbness in my hand is too noticeable and the pain, I can’t ignore it. Like what AS does to bone, once your muscle is wasted and useless, that damage cannot be undone. And I am losing my grip strength. I’m also hoping that for the first time ever, I’m wrong. I would rather go tomorrow and be told I don’t need surgery. Because.. that nerve pain is horrendous. Awful. Unbearable. And it took a year for my skin to not be sensitive as much. How long this time, when the surgeon will have not only released it, but actually moved it to a different place completely, as had been the actual plan last time? It’s another slow/ burning anxiety deep inside. This one, not even my husband knows about. I checked out some soft round pillows with holes on which I can try rest my elbow at night. If the surgeon says I’m headed for another operation, I’m going straight to the aisle and buying it and hoping my elbow will be able to be positioned so it’s in the hole so nothing hurts me. I recall my sad updates to friends who used to ask about recovery. How helpless I was. How no painkiller touched the pain. How even my own pyjama sleeve hurt me when touching my skin, let alone pressure off my arm lying on my mattress, or a sheet on it when on my side… I am dreading it… I am hoping he will tell me it’s all good. I still have last week’s surgery gas pain to deal with. Another surgery..? 😏
“I can’t!”
I have parenchymal bands in my lungs, the lower lobes are collapsed and my lung function is decreasing. When you look up “parenchymal bands” you find one article that says it’s mostly in end stage lung disease and another article that says you might consider hospice at that point.
What?? No way! I still have much life in me. Even if it’s not a good life. Body wracked by pain. Nights..My neck and shoulder scream too. And so, in the absence of any kind of relief from the relentless suffering, I looked for “I Shall Not be Moved.” I don’t care what God allows, like a tree planted by the water, the tree in Psalm 1, I will remain grounded and rooted in Him. Though I really feel like He is slaying me, though I feel the AS moving through my body and I can’t do anything about it, I will trust in Him. And I will not die soon.
(My lung function is dipping below 94 at night. It is going to 92%. Normal is alive 95-100%. When it gets to 88, I’ll tell the pulmonologist. We will need oxygen at that point.)
Still…I’m “on my way to heaven. I shall not be moved.“
Is it possible to ever get used to a world in which my daughter, R, will never ever answer a question? Never have a conversation with me? Never tell me something is sore, funny, yummy..? Is it possible that I will accept it in the next 20 years?
I don’t think so. Sylvester Stallone’s son is a grown adult over 30 years old and the son’s mom still hopes he will speak, converse. We can’t give up. I guess it’s human to hope. You forget all the other months and years of silence and hope today something will be different.
My angel…She loves sitting in her room arranging her toys- very specific ones- in different ways. She can spend hours alone in there. I go in…Sometimes she gently pushes me, asking me to leave her in peace. The other day she shut the door on her dad when he peeped in. Most of the time, she’s happy to see me. Still no, “Mommy!” but she doesn’t cry, doesn’t get angry. But also doesn’t let me engage in play with her or even next to her. If she’s playing with a set of blocks and I take my own set, she takes my set and adds them to hers. No conversation.
Sometimes it’s ok. Sometimes I’ve grateful that she pulled me to her room to go watch her play. That satisfies me all day long! But sometimes, my heart breaks. Yesterday, I took some pictures in. Just simple body part pictures. She wouldn’t look at any of them. Definitely didn’t repeat any word I used. I then took her doll and asked, “This is..?” She blurted out, “Baby!” Then I pointed at her bunny and she said, “Doll!” I asked her to touch the doll’s hair and she did.
Then that was it. No more engaging. She was back firmly in her world. No talking about feet, toes, no matter what I did. She used to love touching my toes when I moved them, and once suddenly shouted, “ Toes!” when I wiggled them. But not this time. That was our ‘conversation’ the entire day.
So, knowing she watches video and repeats what she hears on video whereas she doesn’t often repeat much of what we say here at home, I just decided to teach her a different way. Can’t wallow in heartache all day, can I? I have a child’s brain to try teach! And her twin sister will benefit too, learning from a South African accent instead of only hearing and relating the American one she hears when watching toddler videos.
I did this for the children here at home. Minus the introduction, of course. And dear readers, my silent angel giggled and giggled and laughed and laughed when she watched it!!!🥹🥹🥹
I may not be able to reach her in a typical way, but I can reach her. It was made for them here at home. Just something random to help them learn. Very specific for our needs – building vocabulary, using sentences and teaching a lesson- no running in the house! I cut the video, it was bad. But my very talkative twin is fine. (So much for the orthopedic surgeon who said she must not run, not fall for the next two weeks to allow her arm to heal fully!)
This is a different glimpse of our homeschool life. Needs must…
PS There are some moments… On Friday evenings, we say the Lord’s Prayer when praying. Yesterday, she met saying, “ Our Father…” before the roaster began, and during. 🤣 “Our Father…”
And this is why we don’t give up. Connections are forming. It takes years- we’ve said the Lord’s Prayer every Friday since the teens were babies! And yesterday was the first time she showed us that she ‘hears’ it… And so it’s disheartening in the moment, when she doesn’t look or seem to see it hear. But I pick myself up and keep trying. Why I keep trying to form connections throughout the day. Firstly, why not? And secondly- because I hope springs eternal. The sound of her laughter makes up for the sound of my breaking heart.
I really want to know. How do you know your SI joints are now fused?
A lady in our group had similar gynae surgery to mine and woke up with a fractured pelvis. They had not realised her joints were fused. The surgeon moved her leg while she was under. Yep, there’s that dignity where they now begin the less dignified stuff AFTER you sleep. I appreciated that on Friday. I slept before they even took the blanket off my legs. But in this case, when put under, you can’t scream in pain. And so, they moved her leg and boom, (or…CRACCKK!?)her pelvis fractured.
So I really do want to know…How will I know my SI joints are fused? I don’t want to wake up broken. Nor do I want to break myself by mistake. Let me run to the group and ask.
It’s getting harder to enjoy living. 2022 I had hoped to die. But here I am. Yesterday I had the surgery and ablation and yes, the surgeon (my gynae) did find a growth that he has sent off for testing. But like the other growths and tumors, I am trusting it’s going to be non-cancerous.
The problem is..I am chronically yours. I get irritated with people who tell me about their operations if they don’t also deal with constant pain. We can’t relate. You aren’t going in in pain even before the procedure. But I don’t tell them that. I can’t. It’s my own problem to deal with. People try to do the best they can. They care.
But AS is not only forever, it’s raging. It’s untreated. It’s bad. It’s awful. I can’t find anyway to reduce the pain. Even sitting in my friend’s car coming home from hospital today, she kept pitying me as I shifted around unconsciously, trying to take my weight off my painful SI joints. Impossible. You can’t sit without sitting on your bum, can you?
And with each increase in pain, is an increase in fear. What will happen? What is happening? Am I going to be bent over in a year? Will my neck be moving in six months’ time?? And here I am, writhing in post-surgical agony. I don’t know if it’s gas from anesthesia, pain from the procedure itself, or constipation. After all, your intestine rests on your womb and mine hasn’t been emptied in at least three days. It feels like where my left tube used to be, something is twisting hard and the pain is going to my rectal area. Four hours of this and counting.
There are things worse than death. Living while feeling useless. Being a mom when you desperately need to be mothered instead. Smiling when you should be crying and letting the suffering out. And worst of all, knowing that your chronic disease and this surgery aren’t the worst. The worst is yet to come when I book and undergo ulnar nerve surgery while bearing the pain of ankylosing spondylitis.
My pre-op consultation is this coming Friday. My bones are not giving me a break. Swollen, screaming, even if approval for the next attempt at treatment had arrived, I would have to wait two weeks to start it. And approval hasn’t arrived- when will that happen?
It’s a good thing I don’t live in a country where euthanasia is allowed. I have no choice but to live. And so I will try living with grace. As my friend said today, “and yet you’re still smiling.”
Better than making us both cry by weeping in her car, right?
Since yesterday, the pain has been steadily increasing. For now, it actually is WORSE than before. I see online that you can even take two weeks to feel improvement. I hope it does come.
And this is similar to what you’ll find in the groups. Not many got any benefit from this steps and pain med combo into the joints. But it was worth a shot (pun intended)
I’m meant to wake up in an hour and get ready to be at hospital in the other side of town at 7am. Surgery happening at 9:35. Dreading the hospital bed, the boredom and hoping it will be warm. Woke at 1 to take my last allowed swallow of water with my pain tablets. If they haven’t even worked in over two hours, definitely in for a bad hospital bed experience.
BUT such is life! We have to take the good with the bad. And the good is that my daughter’s cast is off, and she is happy about THAT!
Two nights ago, I kept waking up because of severe pain. We’ve now moved me to a full Trepiline tablet at night. It helps pain a bit, but more importantly, helps with sleep so you sleep through the pain..hopefully. But I’d taken only half and my body was in big trouble.
I had taken my oldest daughter far away from home to go do the first of three sessions of exam preparation for her Biology practicals. And, as most of us know, the pain from too much activity or sitting, rises AFTER the event. And so it did.
I woke up and was suddenly in a panic. “I’ve not been on any treatment even after diagnosis, basically! I’m doomed! The pain is because my joints are fusing right now as I lie here!! I’m going to wake up walking like a mummy.” (It didn’t occur to me that mummies don’t walk!) “Should I go to the fridge and just inject the Enbrel in there? After all, we can’t just leave it unused!”
Sanity prevailed. Why would I jeopardise my life when I have an operation coming up tomorrow? Why would I dare reduce my chances of fighting any potential infection or slow down my healing? Would I be so dumb?
I wasn’t. But those injections keep calling my name every time I open the fridge. They are a huge temptation. Moreso because I don’t have approval for the medication we are hoping to start. Half a loaf is better than none, right? So I might as well use what I’ve got than nothing, right?
And then there will probably be elbow surgery too. Long, long wait. So I patiently wait for the certificate from the panel of rheumatologists allowing me to start taking the new treatment, and approval from the medical aid to pay their very low percentage.
It IS scary, feeling the disease progress. But it would be scarier knowing that I’ve put myself in harm’s way by injecting myself when I have high risk situations happening soon. So…I close my fridge door and hope for the best.
Oh yes, I did my bilateral SI joint “infiltration” last Friday. The intact so far has not been felt. Well, not the positive impact. I’m lying in bed and the pain is already there at 7:04am. I tried working out earlier on but was too stiff so will try later.
After a bad night, I’m sleepy now. But my kiddies wake up (the twins) in 3 minutes and counting! I must set my alarm for 2am tomorrow to take my pain tablets before my fast for surgery. I hope it vibrates and I hope they are effective for those horrible hospital beds.
I went to look for new books at CUM bookshop at Canal Walk the other day. But they didn’t really have much. I chose maybe one book for my middle two, a biography for myself that I’ll lend the teens when I’m done with it, and then this card game.
My aim with educating my middle two, is to make sure that their foundation is strong. Given they are learning disabled, why force typical learning for their non typical brain? So I mix things up. Sometimes a page or two from their normal school books (Christian Light) and anything therapeutic I can put my hands on, always bearing in mind the specific challenges they have.
This one seemed perfect for working their working memory. They have four of each card so up to four can play.
Today was my first time using them with my eight and nine year old and we played SNAP! I chose 4 pairs of cards upside down so I don’t weary their brains, and they each would pick up two cards and turn them over. Then put them back upside down and the aim was to hope that the players recall where each card was so that if they pick a matching one, they go back and pick it.
And before I could even mention it, Amarissa asked if they have Bible verses on them! Win! So we discussed the animal, the number on the card, and the verse..and worked on working memory in such a fun way that they were sad when it was over.
Win!
As for my four year olds? Play includes learning so there isn’t much happening except my taking note of unusual speech patterns in my very talkative one and making videos that playfully correct them. And showing and modeling saying “Thank you” for my (mostly) non speaker who does ask for specific foods but hasn’t learnt to say thank you yet.
My twin above- on the left of the picture as we view it- constantly begs me to read to her. She’s obsessed with two books. A “Seek and Find” David and Goliath book, in which every left side page has some items for you to look for in the right side page (sheep, the sling etc) and God Rescues- a book about Pharoah and Moses. I laughed recently. She came to my room instead of going to bed. and asked me if I’d read to her. I said yes. She ran out my room and told her biggest sister who was waiting to get her to bed, “Ella, Mommy said, ‘Let’s read!’” I love that interpretation!🤣
She is super busy, always wants to be read to, to play… Her quiet alone time has reduced in length.
And my non- speaking angel?
She is hilarious. She is still happy without us. I knelt down next to her while waiting for her to be changed out of her shoes for nap time, told her I love her..and she gently pushed on my knees, showing me I must get out her room.
Her dad popped his head into her room yesterday as she stood by the door getting toys out the wardrobe. She saw him..and tried to shut him out by pushing the door closed.
They’re happy. They’re getting over a horrible cold that has kept their poor noses blocked and miserable. We adults know how frustrating it is to have a blocked but runny nose and we can sniff! They aren’t there yet.
Anyway! This was meant to be a ‘homeschool tip’ type blog so I’ll end here because my wrist is extremely sore. Stupid AS. I’ll share some more on my YT channel. It hasn’t impacted my jaw this time ! Look for @thandilocks
They said I should write a book 