Update at the Bottom-Babies and Bone Scans

Grace by any other name2 Comments

My undiagnosed autistic four year old (undiagnosed because I don’t see a need for it) is scared of babies.

They mention that autistics have big fears, phobias. This has been her phobia since last year when she was terrified by a yawning baby at church. Well, first, she didn’t want to see the baby. The best time, the baby yawned and that was that. She didn’t want to ever go back to church. Today, even seeing a PHOTOGRAPH of herself and her twin as babies was enough to cause utter mayhem. She cried then screamed and threw her juice bottle when a baby’s cries entered the mix. I felt so sad!

So, the phobia isn’t just of babies in the flesh, it’s any babies. And not just yawning, anything they do. Sad to discover this.

I wish my children could enjoy the world around them. It reminds me of my poor boy when we went to the Ear Institute for his auditory processing problems. They had some chairs that were meant to be child-friendly, and had painted palm leaves on the floor. The chairs were shaped like upturned hands with the ‘fingers’ being the back of the chair where you’d rest and the palm being the seat.Both of these were traumatizing for my son. The very things designed to be fun, were anything but!

I join in with the adult autistics who disagree with those calling for autism to no longer be called Autism Spectrum Disorder because they hate the word “ disorder” as they feel perfectly fine with where they are on the spectrum. Nice for them, but for many of my children, autism and its comorbidities has brought disorder to their lives.

It has taken their peace, and as a sweet sister noted today, it has taken my peace as well.

Anyway! The good news is- I don’t know who is reading and only one has asked- is that the paronychia seems to be under control! The cream and soaks and elevation over the weekend seem to have reduced the swelling a bit and definitely reduced my perception of pain. I can’t say the pain is gone because my threshold is high. Maybe for normal people it would definitely still be hanging around. But for me, it’s ’gone!’ Without needing antibiotics.

As for my next AS treatment, I have no clue! The doctor said I can get a form for the disabled parking online and send it through. But no word on treating this awful scourge. I’m more and more tired each day. The other day I fell asleep during the day while reading to my four year old. Had not done that in ages! And my bones feel like they’re on edge. Close your eyes and feel every single bone in your body. Imagine how it would feel if your bones were rusty metal and not oiled at all. Imagine moving that piece of metal with its joints grinding on each other. That’s me.

Tomorrow, I go see a doctor about having a DEXA scan done- bone mineral density scan. My gynae suggested it because of menopause; and given osteoporosis is a big problem in AS patients, I have two reasons to have the scan done and confirm the calcium supplements I’ve taken for the past four years has helped strengthen my bones, same with the exercise I’ve done. Let’s hope for the best and let’s hope I like the doctor! My gynae sent me to another gynae at a hospital 20 minutes away instead of my going to him, 40 minutes away. And let’s hope I get my results! The silence from my current gynae is what tells me the growth wasn’t cancerous.🤷🏽‍♀️

ETA- Less than an hour after publishing this post, I opened my mail and saw a letter from the medical aid saying they’d partially fund the Cosentyx- till October this year. Needless to say, I was relieved but not much. Though I’m suffering, at least I’m not suffering and paying lots like I will have to now that they’ve agreed to pay their little sum. And I’ll be paying and waiting to see if the new treatment even works. And I don’t know how exactly we will pay given the teens will hopefully be in university next year. So yeah. It’s ok news but not amazing. I don’t know how long it will take to work- if it will at all, what the side effects will be and if they’ll be bearable, nor what happens after October. The Enbrel had been approved basically for as long as it would help me.

No Garlic Powder

Grace by any other name1 Comment

It’s been a while now. I’ve wondered if anyone with AS has ever been given a disabled badge so they can park closer to the entrances of shops etc. Today, I looked it up when the garlic powder came into play.

I needed fruit. I needed loo paper amongst many other things. I was alone. I had trouble just bending to take things out of the trolley and it was a third of the usual amount. I went first to the supermarket then to Clicks for the toilet paper. Rather, I limped. It was painful and I was stiff. And so, when I had to go to another supermarket to get their ‘non clumping together’ garlic powder, I couldn’t.

The agony and stiffness in my right leg were too great. My hip wasn’t cooperating. I was suffering and I barely got myself to the car. It was as if my hips were dying on me.

No garlic powder.

I sent the teens. But what will happen when they are gone? I see that my rheumatologist must fill in a form for the traffic department stating whether it’s a temporary or permanent disability. The form asks if I can walk and get out the car on my own or if I’m in a wheelchair and need aid. It asks if I’m using aids. I can’t use any. The cane hurts my painful wrists and I can’t try any other aid as I have a trolley to push.

Today was emotional. Who knew I, the exercise fiend, would one day not even be able to WALK to get garlic powder in a shopping centre?

My wrists are sore. I’m just SORE and so sad! Someone thought they were helping me by reminding me that Jesus loves me. I didn’t want to sound churlish so I didn’t reply. It’s not like I’ve ever said He doesn’t. But more importantly, His love isn’t buying me garlic powder. It’s not getting rid of my suffering. His love isn’t helping me fulfill my duties. I can’t exactly ask Him to go get my shopping for me.

His love is no cure or treatment or help. I need tangible help. I am in need of practical help not platitudes. Those who regret not being able to help, that is understandable. I know they are sad for me. But telling me Jesus loves me…Do I seem like I don’t know it? 🤔

AS is a systemic disease not a memory disorder. 🥹 And yes, I say this as someone who was blasting Christian songs as I drove and sang at the top of my voice. “My God is awesome,” yes. But I need hands and help. My helper can’t get a driver’s license. What to do?

Will keep praying and seeking answers. There are very few domestic workers who can drive. There are very few domestic workers who are patient with the drama that is ADHD and autism and intellectual impairment. And I need one every day now.

Jesus, take the wheel and lead me to help.

I’m Stopping

Grace by any other nameLeave a comment

I’m dropping the Enbrel. It really IS too much of an immunosuppressant for me. I’ve been very careful about catching viruses. Been resting my mask and going to shops when it’s not full. But what about bacteria?

It seems the paronychia is back.

I’d never been convinced it was fully healed anyway. My rheumy had seen fluid still inside my finger -even though I felt no pain-when she performed an ultrasound on it when I showed her it was still puffy.

The GP agreed it looked infected but the hand surgeon told me it was ok. It was just going to remain like that but was ok.

Well, the same finger is painful, had the small peeled off area and is more swollen than before. I’ll treat it conservatively today-hand elevated, salt soaks, topical antibiotic cream, and hope for the best. Last time it took three round of antibiotics to look kinda ok (though still worrying to me and the GP!)

This photo is today. Not too bad yet. The pain level is at the level at which I ignored it last time then couldn’t sleep that night and it had become awful by the next day. I hope it goes down instead of ‘up.’ My husband saw the picture and texted, “No more Enbrel.”

I’ll also contact the rheumy and ask what the plan is regarding treatment and tell them I’m officially quitting my Enbrel despite the three syringes left in my fridge. Or ask for recommendations for people who treat paronychias. But I’ll do that IF this doesn’t get sorted or if one round of antibiotics doesn’t get sorted. I’m holding out for Monday morning when I can see the GP who treated the first attack that wouldn’t disappear.

Sigh!

What a Day

Grace by any other name2 Comments

Well, I was going to post about how sweet it was to dance (to Father Abraham) with my twins this morning. All three of us turning around and stamping our feet. Precious moments. Excuse the noise the teens were making. And excuse my weird outfit- my exercise skirt and a warm top.

But I’ve just had my hair pulled and been punched in the side of the face by my angry, screaming, crying twin and I don’t know why. I suspect she might be nauseous from antibiotics she’s on. Maybe. I found vomit on the floor in her room. But I’m guessing. And she spat the anti nausea tablet out.

I wish she could communicate.

Instead it’s screaming and screaming and I’m downloading a sensory video to try calm her down before she hurts herself. See, she hurt me when I stopped her hurting herself. She’s thrown herself down onto her back and was about to hang her head down.

I hate autism with a passion. I’m already at my wits’ end as it is even without the meltdowns. I truly can’t do this. If someone told me to choose between a wonderful autism friendly centre and my currently nonexistent AS treatment, I’d choose the centre any day.

Except I have no choice. No Centre and no AS treatment to choose between.

I feel so, so alone and so tired and so weary and so worried and so sad.

Did I mention I hate autism?

ETA- Well, someone did happen to ask how the children are at the wrong moment for her. She got an earful via text. Offloading helps even though there are no solutions.

Wins

Grace by any other name2 Comments

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

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

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

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

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

Second win.

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

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

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

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

She came home screaming.

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

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

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

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

Maybe.❤️

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

Not Even a Minute

Grace by any other nameLeave a comment

Today, I have experienced not a minute, not even a single minute without extreme pain. Not enough to make me writhe in agony, but enough for me to wish I was sedated. All day. Not even a minute during which I could say, “Ahh, the pain tablets have worked.”

And this is while still using the Enbrel. Toes up to neck. Pain. Swelling. Pain. Stiffness. I could hardly walk today. It’s like my joints- hips and SI- were made of hard cement.

If I needed any further sign that Enbrel is not working for me, today is it.

I did write to Discovery yesterday, asking them their reasoning. The auto reply said it would take 30 days to get back to me.

I don’t have 30 days.

I don’t even have 3.

Everything is getting worse TODAY.

My mobility is frighteningly reduced. Where will I be next year? Or, at the end of the year?

I’m praying that this is “just” a winter flare, though they do say that every flare causes even more damage than normal AS.

Pink is me last week. I can’t get any higher. Black was in December 2023 and even then, I had been frightened because I’d become worse than I’d been in August.

I feel worse.

I am worse.

I hate AS

And though I keep thinking I’m ok psychologically, my husband says I am depressed. I guess I fit in with the description of those with AS in every aspect.

I still think though, that my depression is more because of the helplessness around getting my children the intervention they need, and thereby, getting the REST I need. It’s the combination that is so vicious. Pain, fatigue, hard work – inescapable work. No leave. No time off.

I need a miracle. Maybe more than one.

An Inconvenient Truth

Grace by any other name1 Comment

(Alluded to in a recent video, but different day, slightly different thoughts for my new readers who aren’t on YouTube.)

We are Christian homemakers and homeschool educators. This means, it’s on us. The home, the education- it’s all on us whether we like it or no, whether we think it fair or not.

I write this as a 40 plus year old mother looking back at her 20’s and 30’s. I was like the young mother who contacted me absolutely tired. Not tired as in, her body was exhausted, but tired of the fact that she is always mom. No break. No weekend. Always mom. (Refereeing children who have upset each other, making my sure they are eating, making sure clothes are clean and children bathed.)

Her husband would come home and relax. She’d still be stressing with their two little ones. It took him a long time to agree to cook once a week. But even that was a hollow victory as he took the easy way out and fried or baked burgers and (I think) chips (baked in the enablements.). She wanted him to REALLY cook. To make a well thought out, balanced meal.

But as much as I hate comparing, there are still the men who won’t cook or fry or bake ANY thing. I grew up with a dad who baked and fried and Sunday breakfast was him- either yummy fermented sorghum porridge, with toast and cocoa, or chips and amagwinya aka vetkoek. His baking was always on point so I just assumed all men helped in the home. He worked, he’d sweep, clean what he can, iron his own clothes. I took over ironing his pants when I was about out 14 years old and even then, only for a short time or when we didn’t have a helper. But there are men who won’t even fry a burger. Sad. Very sad. And not Christlike at all.

But anyway, I did rail at how unfair it was back in the easier times when I only had two children. When I wasn’t a mom and had a normal job, my time at home was relaxed. Now? Not so much. Today is a public holiday. I lay there in agony not wanting to wake Mr I’m on Holiday by opening my pain tablets. I tried not to even shuffle around to find a comfy position. No holiday from disease either, for this mom.

We did work as a team in the morning, with him washing some dishes while I made the children’s lunch, and then it was the Sunday Usual, “I’m going to nap now.”

How many mothers would love to have a nap? I saw lots of people who have Mother’s Days and general days like mine. I’ll leave it there for you to get what I mean. But suffice to say, breakfast in bed..? For us? Never. Napping? Impossible.

So, I rolled up my sleeves and got cracking.

The laundry wouldn’t sort and fold itself, would it? There’s no point in complaining, whining, getting angry. It is what it is. When you signed up to be a Christian homeschool mom, I am pretty sure your husband didn’t promise first that he would ensure you get a break on weekends and holidays. We certainly didn’t agree to it.

This is honestly where you just turn the other cheek, as unpalatable the idea is for many of those raised with feminist ideals. You just do your duty and forgive the one blind to your broken body. There’s absolutely nothing wrong with asking for more equitable treatment for all, but when it doesn’t come, it’s not the end of the world. That’s between your husband and God. And what’s between you and God, is how you will spend the time while he naps.

Will you be angry? Will you bang pots and pans around? Will you let the children run amok in protest?

I know what I will do. I will be a homeschooling mom every hour and minute that I need to be one. I will fold and sort the laundry and tidy up where I can. I will be the one who comes up with ways to keep the children active and busy in non destructive ways.

I will give my best because you see, my reaction is also between me and God. That is the inconvenient truth. GOD is Who my real boss is, not me. What will God see in me when the perceived injustice wants to overwhelm me and I also covet the rest many men get? Will He see me graciously and happily accepting the cup I chose when I chose to be a mother?

Or will he see the devil in me, angrily railing at the world and upset that what I feel I deserve has not been given me?

What did Paul do? Even though he was worthy to receive tithes and offerings, he didn’t. He cheerfully did God’s work for no pay, sacrificing time and health to toil when he did not have to. And so I too will cheerfully do my work. I am laying up my treasure in heaven. Self forgetfulness, sacrificial giving, meekness, turning the other cheek, godliness with contentment? God sees. And that’s Who I live for before I even think of living for myself.

It is tiring. It is lonely. All we can do is give GOD and our children, our best. And God will help us to do so.

I Summoned the Devil

Grace by any other nameLeave a comment

I summoned the devil. And I knew I was about to! But, I’m desperate. And have no clue what exactly I’m waiting for from the rheumatologist’s office . Are they going to appeal? Are they done with helping me? And the last time I asked for info a month after the original request for change in meds, I was reprimanded like I’m some irritating dummy by her nurse. So I won’t be asking.

Back to the devil. This devil is an oral tablet called Sulphasalazine or Salazopyrin. I emailed the rheumatologist asking if I can try it for my fingers and other peripheral joints. See, my first rheumy gave it to me in January and it did nothing. In May, the next rheumy said they didn’t know why I’d been put on it and it alone seeing as my worst symptoms were my spine and SI joints, which Salazopyrin apparently doesn’t work on. It works better on the peripheral joints – fingers, wrists, feet… Given how bad things are, I figured, “Ok, I’m getting worse. I have no clue if the rheumy’s office is appealing nor what the way forward is because they ignored my first email saying I’d be waiting to hear what the way forward is. So, let me try Sulphasalzine as I have some in my house and maybe it can reduce my suffering. “ I was really upset the night my HAND of all things, woke me after a terrible sleep anyway. It is just such a small part of my struggles, so it was a personal affront that it- not my back, shoulder, neck- decided to scream out that night!

This is now war!😅

I emailed the rheumy asking if I can try it, and she said yes, and sent a script. I knew what I was letting myself in for. It’s so horrible a medicine that you have to take it super slow before you get to a therapeutic dose which is four tablets a day. I suffered starting on two tablets last year- headaches and urgent diarrhea -so yesterday and today, I only took one. And even so, the side effects have begun.

I knew I was calling more suffering upon myself. And I know it takes six weeks to kick in once on full dose, so I’m giving it eight weeks before I assess if I should continue.

Send help. 😩😉

ETA: As I was sending the script, I saw that my current rheumy has very different instructions. She actually DOES want her patients to start on one tablet first. Heh heh, I’m not as clever as I thought. The first guy just wanted to overwhelm me too quickly

At Night

Grace by any other name1 Comment

A group member asked if when we dream, we have AS in our dreams with its attendant pain like she does when in pain in the night. I told her, no. What happens with me is that I have nightmares. Always have no matter what causes the pain-post op recovery or bones. I have nightmares when in pain in the night.

They’ve been getting worse. Prolonged. More personal. Usually, something bad has happened-like a dead father. Or something bad WILL happen and I have to escape. But now, it’s happening to me directly. Two nights ago, I was being viciously assaulted -r*ped. I’d try run to freedom and help, and THAT man would r*pe me where your bowel movement comes out. THAT back passage pain remained so strong throughout the multiple dreams that I was sure I’d wake up with some weird buttock (u guess my SI bones were screaming) pain. I’d wake myself up (or so I thought) but I’d wake up into a new nightmare. I ended up thinking I was in a coma and would never be able to wake up, stuck in horrendous dreams.

I did wake up.

Last night, bombers were attacking our university and chasing us individually. I ran to a shopping centre-there was a knife man. I couldn’t run away. My legs wouldn’t move.

And of course when I did wake up, heart pounding as always, I was in extreme pain. My knees are getting worse. More swollen and more sore, for longer. Same with elbows, right shoulder, fingers, neck and back. Neck today has been bad. No position was pain free at all. Nothing helped. My husband was asleep and I didn’t want to try shift too much in case I woke him. My daughter has been awake since three am and I heard every bit of her laughter till I woke him at 6am to go check her diaper.

I discovered yesterday when trying it with my husband and child, that I can no longer lie on my tummy and go up much with my hands on the floor and arms not. I’m as high up as when my elbows are bent. So that’s what I will stick with. I won’t let this stupid disease bring me down so much that I give up on my AS exercises.

And I’m not done fighting. I emailed the principal officer for the med aid and have asked what requirements they have that I haven’t met yet. I asked the pharmacy to do my last box of the Enbrel. I had canceled it when we were sure I would be approved for Cosentyx. I did my third post-op Enbrel injection on Friday. I’ve bought sanitizer for the car for after I’ve paid for fuel or been to the pharmacy, I’m wiping trolley handles down and try to remember not to bite my nails. I’ve put a mask in each bag I take with me to the store or pharmacy. I’m ordering stuff even when I can send the children as I’m scared THEY will catch a cold or something while waiting in a queue.

I’m down but not out. I couldn’t think of anything positive to say to God yesterday. The pain and fatigue were too intense. And today, the pain worse. I couldn’t post a positive status.

I’m down.

But not out.

Americans

Grace by any other name1 Comment

I genuinely felt sorry for the Americans in my groups. The ones whose health insurance tells them, “This year, we’re not paying even though you’ve done ok for 14 years on this biologic.”

I have no clue what has gone wrong. I d didn’t expect this. After all, I’d seen this.

Then yesterday, I got THIS

I have no idea what to do. I wasn’t going to rejoice, but for me, it was a given that they’d agree to partially fund the biologic. I just knew the approval was going to be the first step on a very long road. That’s the thing. But it was an obvious step. I’d even asked the nurse what the chances were of my getting declined and she said it basically never happens, we just have to follow the process.

Well, here we are. I’m stuck with a R7400 biologic and no way of accessing school fees for any of the children. And that’s the problem. I could handle being sick better if I wasn’t also homeschooling. It’s not like the Cosentyx would have helped me immediately. It’s not immediate- if at all! And it still does suppress your stupid immune system that’s on overdrive so maybe I’d have still gotten sick and needed a break. I needed four months. Four months of suffering before knowing if Cosentyx is the right med. Instead, I have THIS. No Cosentyx. No journey to trying to slow this down.

They said I don’t meet the requirements. Of course they don’t give you the contact details of the decision maker so you can ask what requirements those are! And honestly, there’s nothing extra we could say. We gave them everything the first time. And still they said no. That’s what’s hard when people I tell ask about lodging an appeal. I have no new information. It’s still the information they said “So what?” to. How would an appeal help?

I feel like I’m one step from losing it. I can’t homeschool four small and out of control special needs children. I need school. I will never be able to afford special school.

What a mess. I feel hopeless and sad. Today is a bed day but instead I’m off to meet a cardiothoracic surgeon and HOPE he has something better to say about my daughter’s rib than “Wait till you’re older then the pain will hopefully reduce in intensity.”

Things are bad.