I set up a blog instead
The video I believe I said is create LAST week. Sorry folk! As you can tell, as has slowed a lot down. And as you know, work has increased but at least now I can share – for those who can hear- how my daughter’s sister felt about meeting her for the first time ever.
HERE or just click on the play button.
Do you ever think about your shoulder? As in, the entire bone running from your neck all the way down to your fingers? I still wish I could tell that dismissive orthopedic guy that he was a dummy. Even a GP took my shoulder pain seriously enough to inject cortisone into it. Anyway…
I don’t think about my shoulder. I do think about my painful and swollen, ribs, stiff neck and hip and SI joint and back. And feet. But it had been a long time since my shoulders had wanted to remind me they exist. Last night and today, they joined in and I just couldn’t sleep. Hands sore, left shoulder sore. From neck down to the tips of my fingers.
Cape Town is definitely no good. We have high humidity and I’ve often wished we could move to somewhere warm in winter to avoid winter flare ups. No weapon formed against AS has won yet. And I’m tired. Tired of pretending to be ok. Tired of knowing people know I have AS but not giving grace and empathy and tenderness. It’s so LONELY. It’s my ten year old who worries. So let me re-phrase that. Except for my ten year old when she notices I’m limping, there’s no empathy and tenderness and worry and, “I don’t know how you do it.” No concern and care. All I got when the rheumatologist said I need to ‘resign’ my teaching job and go on disability aka stop homeschooling, was a husband asking, “Is she crazy?”
And I’m not alone. Too many men don’t want to understand how bad it is. I’ve often wished I could give him just an hour of the pain and fatigue I’m pushing through. Just an hour. It’s so common for men not to get it or want to get it. If you’re in my shoes, you and I aren’t the only ones. I personally know people, and have seen it in AS groups. In general for all ailments, most men don’t get it.
And then, with the confirmed learning disorder diagnoses, comes more work, not less.
I have mixed two dysgraphia curricula together as one full one that the educational psychologist recommended is just too expensive. Not only did physical goods like these ‘unknown to me’ things that arrived yesterday, but a whole lot of ebooks too. It’s a whole new journey that I first have to study. And I’m not even coping with the current one.
I forgot to put antibiotic ointment in my girl’s eye yesterday. Thankfully we’d reached the right number of days but I wanted to do some extra days because she fiddled so much with her eye lid. Thankfully the pain is gone and it is settling down after surgery. I forgot to take all my medications yesterday (and most days.) When I woke up from pain, I was wheezing. Time to take the forgotten inhaler and use it. Time to take my forgotten nasal spray for the chronic sinusitis and use it.
I am on the edge of breaking but the children rely on me. The hours in the day don’t match what I have to do for each child. Nor for the amount of rest the rheumatologist and I both know I need.
Of course, having to study the dysgraphia curriculum and figure out what is needed per day is adding to the daily trials. Besides a husband who doesn’t understand, there is a lack of special schools anyway. I’d be trapped either way. And so, I have to get a heater and get this room warm so I can prepare even later into the night and start earlier in the mornings. Complicated by increasing pain that sees me having to wait for the painkillers to kick in a bit so I can focus on my Bible reading FIRST. But I find myself falling asleep when reading. AS fatigue keeps you tired anyway. But add lack of sleep…
Winter in Cape Town (and elsewhere but I’m here!) is brutal. Pretoria is less humid and so my oldest two had had no problems with their fingers like they have had for YEARS here in our winter. Until yesterday. My poor daughter’s fingers swelled up way more than mine but thankfully she’s not feeling any pain yet.
We need more hours in the day. And with my non- speaker responding more I have to add more for her too. Puzzles! She’s been loving looking at the picture. She pointed at each animal I asked her to point at. Every single time! She’s never done that before! She shouted in a high pitched- kinda scary because it was an unexpected and new -voice, “Puzzle pieces!” for the first time ever when I took a new puzzle to her room and told her “Puzzle!” She gestures more. Wants the room dark when she’s having her quiet time. She copied my movements when she had struggled with the pieces. Understanding what to do after I only did one for her.
Everyone needs more work and attention. But my body is failing me, there’s not enough time, and their education is becoming more complex. What a crazy ride this has been. And it’s not about to end!
I hope the trials of your day today don’t wear you down. I hope we all survive today and every day. I hope an end is coming soon and I’m thankful to the author of @lyfedreams for commenting. When I have time, I’ll scroll all the way down. People all over are dealing with trauma and pain. Overcoming and sharing to help others. Let’s do it! Grace and peace to all!
A lot has happened, folk! One morning last week, I suddenly planned for my ten year old, Amarissa, to meet her birth half sister the very same day. I’d already arranged with older girl who is studying at uni, to fetch a laptop we’d bought her but my fear had been Ammy might be overwhelmed so I’d planned for when I thought she’d be in surgery. (Who was I kidding!? As happens for me, you’re starving and thirsty and two hours after the time you were told to get there, you still have no idea when exactly you’re going in!) Anmy was terrified. The knee surgery scared her for any new surgery. Even a song I played in the car had her asking me to skip it because it was the song that was playing the day I’d begged for an appointment and during it, was told to go home and pack and go straight back to hospital for IB antibiotics and surgery. She never said it then, but the drive home after realising I hadn’t just been overly cautious about her leg was scary for her. So now knowing she needed eye lid surgery to remove a cyst was terrifying. The closer we got, the more anxious she was. My heart broke for her and I couldn’t take her. My stupid, failing body wouldn’t manage the drive and also the sitting. So I thought she needed a distraction.
It was great! I’m so glad I did!
I plan to do a video about it before this week is over so I won’t say much about THAT.
My Twin B had an allergic reaction to ‘something’ that impacted her finger and cheeks, and then from scratching the cheek area, her poor face was infected, so went on antibiotics which I believe caused prolonged constipation. (That was a long sentence!) She became sadder and sadder and ate less and less. After prunes and prune juice didn’t work- was thankful she enjoyed eating the pureed prunes as she has become stricter about what she doesn’t like- I then moved onto OTC laxative syrup and after four long days, we had POOP! Whew! I know what prolonged constipation is like thanks to my IBS so my heart was breaking for her and I was WORRIED. What if I was ignoring something bigger than a reaction to antibiotics? After all, my experience with antibiotics has been abdominal pain, nausea and runny tummy. Not blocked up tummy. Was I wasting precious time and she had something worse going on? I had set up an appointment for the latest possible time just in case… And I’m thankful I DID have to cancel. I have put her on a maintenance dose of Lacson for a few more days and literally shouted, “Yay! She pooped!” this morning. As if she hadn’t begun the previous day!
My oldest two came for holidays this week. Eduvos- where they are studying- has blocks (quarters) instead of semesters so this is block number two holiday season. Ammy and oldest daughter have always had a prickly relationship and this is by far the worst. I blame both girls. I told Ammy once that she’s acting like a teenager and as replied, “Uncle T also said that!” Two stereotypical ‘teenage’ girls sharing a bedroom is a recipe for disaster. It has been constant fire fighting and telling them to just stop! So I thought I’d try some reverse psychology I left the room when I heard their raised voices yet again, and proclaimed to Amarissa, “Alright! I am changing Eliora’s flight. She will leave sooner now. Then you can be in peace.”
It had the desired effect. Ammy shouted, “Noooo!!” and went back to their bedroom which she’d left in a huff and hugged her and told me, “She’s NOT going! She’s NOT going!”
Boy am I glad that worked! If she’d agreed, I’m not sure I’d have afforded a new ticket!
And, I gave my son… I have a 20 year old son! Me! I don’t feel old enough! A wallet for his belated birthday gift. I didn’t plan the timing to send it well – once again even my Apple Watch stats are telling me my walking is bad and I feel it. I feel horrible, always tired and am faking being ok a LOT. I realised too late that Paxi wouldn’t deliver on time, so I just told him he’d get it when he comes. I sent a birthday cake, and ordered them take out on his actual day. That’s our birthday thing on top of a gift. The birthday person chooses a restaurant meal they want and mainly because of our non speaker and my inability to sit long, we then get it delivered. I had to now buy TWO cakes and meals because the small ones said they too were celebrating his birthday and deserved the same even though he wasn’t here. All things I can’t eat thanks to stupid IBS!
For me, it’s the anniversary of the day I became a mother for the first time. Given how my values are based on the fundamental teaching that the mother is the educator, spiritual guide and nurse and nanny, this is a very important anniversary for me too. Plus of course, it came after prayers and failed ovulation medication to boost fertility. So it’s big to me. I too should get a gluten free cake on birthdays. After all, without me, none of them would be here in this family.😎
But buying a gift is difficult. Because he now has his own Kindle app, I don’t know which books he has and hasn’t read, so I couldn’t buy him a book. So I got a wallet.
I thought it would be boring for my son who said to his little siblings that no, he does NOT feel like he’s a man. Not even close to feeling like a man😅. But I loved the inscription so to me it was worth a shot. At the very least, he’d know I was thinking of him.
I was not prepared for how he immediately emptied his old wallet and transferred everything into THIS one. That meant the world to me! And a day later, I found out exactly how much it meant to him to.
This is one happy mom. All I want is for my children to never forget what their mother has taught them. I am not homeschooling him anymore, but the prayer and hopes and trying to be a pure influence remain forever. I want His Creator to tell me I did everything I could to make his path to heaven smoother.
Let the church say, “Amen!”
I used to bake. From when I was 13, I baked. Sometimes my dad and I would bake at the same time. I’d bake chocolate cake and he’d make muffins. He was the one in the family who made idombolo (Traditional S African steamed bread made in a large pot of water.)
I baked when I’d go home on weekends. I baked when I went vegan. I baked gluten-free when my gastroenterologist pointed that gluten is a huge IBS trigger. I baked for my oldest two.
But then AS progressed – as it does- and I couldn’t bake anymore. Not often and not without having to rest and then sometimes forgetting there’s something in the oven because I’m now working on something and it burning.
I had hopes. I truly believed Rinvoq would revive me. I thought I’d be able to handle laundry like it’s nothing. But wow, i feel like collapsing after just one load hung or brought down, and my arms don’t want to be raised for long. I can’t be the mother and worker I wanted to be. Also, I thought I’d be able to stand and bake. Instead, I don’t even make my own IBS-friendly food because I’m in so much pain after cooking for the rest of the family. Rinvoq has not changed my right leg. I can’t even do might walking exercise for five minutes. Movement and standing and sitting cause worse pain than ever And so, the cupcake liners I had bought, remain unused.
Unused till today, when Ammy (my ten year old) had decided to raid the kitchen and find unorthodox hair decorations. She found some-the cupcake liners to do something different with their wool I’d put in their hair.
It was a painful trigger. It was a waste buying them. The hope was not fulfilled. So instead of being angry at the wasted money, angry at them being used without permission for something they were not bought for, I held my peace and instead commented on how they should ask before taking people’s possessions , and that it’s very creative.
Hurray for crazy creativity. She should be one of those designers whose clothes when on the runway dazzle ( If you have different tastes to me) but aren’t for normal people.😄
AS keeps stealing from me. But my children have taken a few things back and use them for a different purpose.
This morning, someone sent me a voicemail passing condolences to me regarding an in law who passed away. Except I didn’t know the in law had died. They’d become an outlaw when they pointblank refused to care for their child and left them for others to feed and love.
Never even a visit to see the child, nor to have the child visit him.
So I contacted the relative and with a sense of irony to gushers where she stood, passed condolences on for the death of her husband. The relative quickly replied that they would pass the message on to their child who. unlike the relative and I, is truly grieving.
Children have an idealized version of their fathers. Especially little children. Moreso one who engaged with father only via telephone. He could be any kind of hero when he’s just talking and not reprimanding you or making false promises or not in your presence just sitting there while mom is mom and dad.
But I and the widow know better. So do other relatives and friends I told. Some people are ‘mourned’ with as much sorrow as if they were complete strangers, because of how they acted, or worse yet, there is a sense of freedom in being freed from shackles binding one to the now deceased spouse.
What will YOUR wife say to herself when random people think she’s grieving and treat her accordingly? Will she think, “Really!? He wasn’t a great husband, what is there to miss?” Or will she think, “My heart is so empty. What will I do when people move on and I’m still here grieving?”
When colleagues and ‘friends’ praise you, will she think, “Yeah, to YOU he was like that because he craved admiration, but to me who saw through him, who saw the lies he pretended to live when he spoke to you, he was as artificial and as loving as a plastic flower.”
Or will she think, “Yep, that’s him alright. I will miss all those qualities and the ones he had as a husband, a role he played only with me, his wife?”
God matters but many men (and women) don’t care about God, and God isn’t the One sending my relative messages. God isn’t the One asking my relative to pretend to feel feelings he never awoke in her. People are. And people are very easily deceived.
Are you a liar? Pretending to study God’s word when in reality you only study when you’re going to preach or teach? Or are you living in His Word? Would your wife say you were a godly husband? Or is she hoping you don’t die so she never has to say anything about you?
Are you really a family man as you pretend to be at work? Or are you fully invested in the interests of your wife and children in a way you can’t even fully portray at work?
Were you generous to strangers who would praise how giving you were, but withheld your love, attention, affection and heart and ears from her?
Or would your wife stand up front if asked to speak, and be lost for words because you were her heaven on earth and now she’s in her own version of hell?
What I know is that the same word came from the widow as came from me when I told a friend the husband had died.
“Numb.”
We aren’t cold hearted enough to not care. But we have only a shadow, an idea to miss. Someone others loved because he pretended to be loving, when in reality, he was a source of strain and pain to those who truly tried to love him..and win him to God.
What will your wife say to those who are close enough for her to be truly open with?
And if it’s justifiably negative, what are you going to do about it today?
We sang this in school. It was one of my favourite choral productions- Joseph and the Amazing Technicolour Dreamcoat. We sang a lot from there, a show I’d never seen but knew was done by someone extremely famous, Andrew Lloyd Webber. We sang a LOT of his songs in our choir.
My friend told me of how she blacked out this week and got injured. The world no we chronically sick people live in is such a parallel world. We are constantly suffering while everyone rose lives their day hot by hour unconscious of the pain, while the moments that allow the sick one to forget the suffering are minimal. I blacked out once at school. Found myself at the bottom of the steps with my friend extremely concerned and wanting me to go to the sick room. But I didn’t want to miss choir, so given I was feeling ok, I pressed on. I didn’t even think to tell my parents. As always.
This is the same school friend who would tell me I’m walking “like a granny” when what we now know are AS flares started up. The pain in my feet would burn so bad and I’d try curl my toes so they don’t hit the floor hard. My toes and finger so swollen I could barely hold my pen to write and sometimes just listened after showing my teacher why I wasn’t writing. I’d get home and make a mug of cocoa but my fingers couldn’t even curl to hold the handle of the mug.
I don’t know why, but I woke up this morning and as I tried to psyche myself up to get my pain tablets but the pain so bad I didn’t even want to move, I remembered this song. It was sung at the beginning and end of the play. For me, it represented Joseph in prison. Alone and sad. Weeping while the world slept. Forgotten. Sold by those he loved. So alone in his innocence. Just like me when I was a child.
What memories does this little one have hidden behind her smile? Nights of pain. Nights of lying on the bed she shared with her parents rolling around trying to figure out why her legs hurt so much, night after night. Doctors claiming it was growing pains. I’m still waiting to grow, then.🥹The stomach pain bringing her first colonoscopy two years after this photo. The daily burning abdominal pain as she walked to the train station with her daddy after school.
When we were still newly wed and living in Kenya, they had the production going. Joseph and His Amamzing Technicolour Dreamcoat. We’d stopped watching most shows by then but this I just had to see. My husband had also done it at his school, so it would have been nostalgic for both of us.
As I sat and watched, the tears just flowed for so many reasons. Nairobi, Kenya was the first time I knew that Black people (not just a few here and there, but almost an entire cast!) did theatre. It was amazing watching all these Black people singing songs we sang in our very British schools. Just seeing them so energised and hearing those lyrics coming from their lips was emotional. I don’t know how many black people TODAY in South Africa know the works of Webber.
Singing the lyrics as they sang all these songs we’d sung in school, took me back to school. The choir was my safe space. Music always took away emotional and physical pain. It was there too that instead of insults about my looks or body, I was told I could do something well. Very well. So well the choir teacher would tell the first sopranos that I was carrying them and they were flat so I should keep quiet and they must learn to sing the right key. (I can see where I got my absolute distaste of bad singing😩🫣 It’s jarring to my ear. There’s a church that has a very flat woman who leads with a very loud voice. It’s unbearable on top of how many don’t stick to the actual tune which we at our Xhosa churches grew up singing because we sang the notes as they are in the hymn book.) I digress. Beautiful music was my healing place.
I could forget myself and be the person singing the words. I could be Joseph. Betrayed by those who loved him. I could be Joseph, seeing how God allowed the bad to lead to great good. A good better than his past. I could see God better when I sang to Him. Even in normal assembly.
God appears vividly coloured when I sing, just like when I’m reading His word. I can forget the pain I’m in. I can forget that yesterday my ten year old wanted me to go back to bed as the flare began again. I can forget the neck pain, headaches, deep sore in my gum preventing me from eating ok and brushing my teeth (Rinvoq side effects), hip and leg pain when I’m lying here crying over lyrics from decades ago.
I too wish I could have someone “give me my coloured coat, my amazing coloured coat.” (Last line of the song) I just want to be ok. Joseph wanted to be ok. And the God Who eventually led his bones to the promised land, will heal mine one day. But oh, I close my eyes and know the someone far away who is weeping, is me. And maybe Flydah in Kenya, far away. Thank you for reading my heart ramblings and encouraging me.
By the way, I saw THIS version below first when I looked for the song so I could sing along to it. I felt so stupid as I watched. It took me ages to figure out why the lead singer was wearing a colourful ‘dress!’ Ankylosing spondylitis brain fog. Even Ammy quotes “brain fog” at me when the cloud caused by AS messes up by memory or my speech. I love the mix of singers. THIS video is what made me realise how BIG this song is. I truly never knew even though people have acted the entire story. 🤦🏾♀️Maybe the blacking out and falling down the stairs knocked some brain cells out.
The range is actually 30-40% delayed thinking, functioning, planning, memory, organising… I believe this. Especially for my older two who amongst other challenges, have moderate to severe ADHD. It also matches the outcome my ten year old had after an assessment. Her emotional age was six years old yet she was ten. I hope it helps any other person out there to understand why their child is being more childish than they ‘should’ be. Why they lack common sense or logic that ‘should’ exist at their age. Obviously, some aren’t as lacking, and some are even more behind than 40%.
(ETA doing the hair of ADHD kiddies is an exercise in patience. You see other children absorbed in their tablets or iPads. Mine are absorbed. They recite what they’re watching. Especially Nalo. “I e is ie for pie.” She knows every line coming up. But they still move around soooo much. Given they cut a lot of their hair. We had no choice but to cut it all, so it’s SHORT. Trying to grab a hold of short hair is hard. Add a child who just as you have it, then sharply turns their head merely to see what the other is doing on their iPad even though they can hear it… (And yep, they all broke their noise canceling headphones. Even my poor son who needs them the most.)
Now, onto the smiley things. The things that make me smile!
My boy is the girls’ personal butler. His five year old sister used him the most.
I was working on closing the ends of wool journey. Haha, I call it a ‘journey’ because as with my locs, I learnt online. Someone coming here for just one head would cost R1000! Imagine all that money! Impossible. I’ll save our hair products myself. The girls kept finishing our sprays and moisturizers in one week or less. Breaking lids and emptying contents even onto the floor. And they creep into my room to get them even when I try hide them. It was constant “Let’s go to the mirror and comb our hair.” And they’d hate starting their school day because they hadn’t litter their hair to be puffy. Cue, the jumbo box wool braids to stop the madness till we can (for the THIRD time, resume locs and hope that this third time will see them never cutting their hair again.)
That was a much longer paragraph than planned! I asked him if he’s HAPPY that Nalo keeps asking him to make toast with peanut butter for her. Their appetites return with a vengeance after their ADHD meds wear off, so evening is hunger time! And my sweet boy goes up and down fetching bread, peanuts and raisins. He said he LOVES to feed his siblings. Ammy is a bit miffed. “Why him? Does she like HIS bread the most? Why doesn’t she ask ME?”😅
Another smiley one is our non speaker insisting on her older sister using her tablet in her wardrobe. Our schedule includes breaks where they each get their tablets and do educational apps or watch educational videos I’ve either created for them, or have downloaded for them. It’s been months of this. It’s crazy but cool. And her sister is totally happy with it. We all need some darkness and calm.🙂
The last smiley thing is Nalo’s absolute joy of learning. I posted two or three little snippets of our one class session. Besides thinking about her work, her brain (AuDHD) is running in multiple directions. I hear, “I love you” out of the blue and she tells me ‘completely unrelated to school or to the topic’ things.
But what was made me laugh was when I came out the bathroom and she proudly showed me all the pages of one of her reading books that she’d read while “waiting” for me to come out. I don’t know if she’d the right judge but I’d like to believe she did read everything correctly. 🙂 I truly hope she never stops enjoying school.
But it was much better than the previous night, and for that, I am grateful. I’d told a young lady who always checks, how scared I was to sleep. And you can therefore imagine how great it felt to tell her that I survived the night.
Resuming Rinvoq after the break meant that it felt as if I was starting it afresh, never took it. Every side effect was as bad as the first time. The stomach bloating and pain and weird creepy crawly intestine as if I’m in an IBS flare where it feels like you have a baby that’s kicking and making waves in your belly. The headaches. The swollen throat that closes up and causes bad snoring… (That one never stopped except for when I was off the treatment.) I can’t even make the Afrikaans g sound anymore. It’s quite scary what this has done to my throat. And the horrific dreams. Extremely vivid and mirroring in a gruesome way, the actual pain I’m feeling.
Thursday night was the worst. The children slept better so they didn’t keep waking me with their noise, which meant, I could sleep better. Too better. Remember, Rinvoq makes many of us feel anesthetized and terribly sleepy almost all day too. That night was so bad I contemplated just quitting and letting the disease continue taking my lung function and turning me into a ball of hellish, burning pain again.
I dreamt I was holding something which then turned into glass right before my eyes. The glass shattered into small shards. And pierced my right hand. Many pieces embedded in my right hand. As I used my left to try pull them out, pieces that were stuck in my left hand would pierce my right hand too. I looked at my fingers, full of little slivers of glass, the pain horrendous as the pain grew worse.
Then I woke up. In real life, I had pain from elbow to the tips of my fingers. My hand was swollen and stiff and sore.
Then in another, my husband somehow got a branch into my throat from in front of me as opposed to through my mouth and down. I couldn’t speak to tell him he was killing me. But then he realised and started trying to get the branch out my throat. But each time he tried to pull backwards, the branch would cut off my airway completely and I didn’t have the ability to tell him I was dying. Then he’d realise and lower it again. Then he tried again to remove the bean h, the roughness causing extra pain in my throat, but again I’d choke and have no air.
Turned out I was on my stomach and my throat was so swollen that when unconscious, it wasn’t staying open. It was painful and swollen feeling in real life. THAT was when I truly started believing the treatment will kill me before my diseased lungs do.
There were other dreams when I tried to sleep. I couldn’t roll over but on my stomach I was being smothered and dying.
But, last night was normal. And so, I hope that today will be normal too.
Haha, I was looking for a picture of a skeleton and this one reminded me of first year speech therapy and audiology. We were each given a human skull to take home or to res to keep reminding ourselves of the bones of the inner ear etc. My husband-to- be thought I was creepy. I didn’t even think about it being human. It was more real cutting open the corpses in the hospital basement. But even then, I just wondered if the corpse I was working on was one donated specifically for us to cut up as some people do (Leaving their body for research or students) or if it was the corpse of an unknown homeless man whose body was brought in for students to mangle learn on. Those were two of the main places the university for corpses from.
Back to why I’m posting today. The chronic issue that gave rise to the name of this blog. I am starting to feel my skeleton and the first frisson of fear has begun. Unlike Enbrel which started working on my AS symptoms after four months, Rinvoq started in the third week. And the difference was much more obvious than with Enbrel – until the flare started last week. But even then, I didn’t have the usual, “God, this is no life. Please kill me,” request.
Until today. In the same way Rinvoq works fast, if you’re just an hour later than normal, your body starts acting up. Now it’s been three doses missed and the cystitis symptoms are still there and instructions from the rheumatologist were clear. “Do NOT resume the Rinvoq until all symptoms are gone.” And they’re not. I still have the pain. And honestly, I wouldn’t want to take it until I am healed. Who would want to change a hopefully easily treatable situation into a potentially kidney function threatening (As if my kidney function needs to get worse as it is), if not life threatening, situation?
So, I wait. But, as I just told my mother in rural Zim who asked how I am, my bones are crying now. I am in extreme pain and the fatigue has returned. Even my sternum is reminding me it exists. My children obviously see it because they kept telling me to go rest when I was tidying their dishes and plates up.
The new fear doesn’t end there with just the fear of an infection that won’t respond to the first antibiotic and will need longer treatment. Remember the ‘many months long’ paronychia when I was on Enbrel? WILL this infection heal soon? But also, what if more infections keep coming and it turns out I can’t keep using Rinvoq because it might kill me, like the way we had to stop using Enbrel? I’d be bereft. This has helped me more than any other attempt.What if the next infection damages more of my lungs? What if the next treatment attempt after having to quit Rinvoq will be like Cosentyx? Useless to me?
As I said, never in my life do I recall having cystitis. I just knew I had it because of my symptoms matching it, not because of experience. The test just confirmed it. By the way, I’m thankful for Intercare that always has appointments available to book online for the following day. I’d also never had a paronychia till Enbrel.
So now, I actually have to pray about these extra possibilities. All along, I’ve been masking up to try avoid those kinds of infection. But as the finger and now my bladder have reminded me, there are infections you can’t prevent. Enemies you can’t predict. Things I don’t think of as threats when I’m praying to not catch a cold or flu. And now my minor blood pressure worries have truly become minor. I guess because I knew that there are anti hypertension medicines but there’s no other way but to stop if I keep getting sick.
And with the improvement I’d started to feel, that’s a big problem. My daughter even asked how I keep making my bones crack when I get up. She thought it was on purpose! Like when people crack their knuckles. I wish!
Ankylosing spondylitis has reminded me who’s boss. It’s still that same incurable, progressive (ie it gets worse or treats you worse as time goes) inflammatory autoimmune disease. As if the leg that’s permanently painfully limping if it has to walk for over two minutes straight or try to exercise wasn’t already reminding me.
Chronically Yours signing off.
The one whose club you don’t want to join and to which if you belong, you wish you could get out of.
And don’t forget my children. My ten year old said she has always remembered my telling them never to play with fire. But, she thought the BLUE flame on our gas stove wasn’t fire. She touched it. It hurt. She was surprised.
She’s turning 11 this year.
As I’ve said. I need many of me to watch them and keep them safe.
My heart sank. At least she’s stopped self harming with needles and scissors. But yes, this life is extremely unpredictable and WORRYING. Their angels are working over time to keep them from permanently leaving this life. She’s promised never to climb up here again.
She can’t ever struggles to keep her promises.
Hmmm
I’ll start with unloving mothering before I go into special needs mothering. Readers know the two posts I typed about the missing Joshlin Smith. Her life imprisonment sentence even made it into international papers so I won’t go into that except to say that I wish we could get the TRUTH out of her so everyone who loved Joshlin could hold a memorial service for her. (You can tell what condition I feel she’s in.)
I saw today that a mother reported her two year old as missing but it was quickly found that she had sold the child for R75 000 to a witch doctor. The witch doctor has been found and has shown police where he buried the little one.
AGAIN?? Just like Joshlin but for a much higher ‘price.’ But at least this time her little bones have been found and so has the evil witch doctor who practices death and darkness.. and that’s where I’ll stop.
It’s when you see things like this that you realise how perhaps loving your children isn’t normal. I know that most parents in my ADHD groups have yelled, hit, sworn at their children for doing things mine do. I’ve never done any of that. So hey, I can’t be too terrible a mom. I have not sold my child nor do I angrily scold them no matter what they do.
It is heartbreaking that while I stress that our twin is hardly eating vegetables, preferring dry cornflakes, dry pasta, noodles and grapes, some are ok with giving their children to a killer. Clearly like Joshlin who was neglected and abused, this little one also must have not been loved even while in mommy’s care. It beggars belief. The wrong people keep falling pregnant.
And unlike stereotypical African society, I’m not ashamed of them nor their challenges either. God has a plan to fulfill through them and my job is to ensure I allow Him to work.
So, we move onto our special needs parenting wins. I became weary of telling my teens to TALK to their last born sister. Just because she doesn’t answer doesn’t mean she can’t hear. And just because she’s intellectually impaired doesn’t mean she’s deaf, mute and blind. She is easier to reach than the great (though unlike our kids) neurotypical Hellen Keller. But they didn’t. So I’ve carried the torch alone. Naming things over and over. Naming what she pulls my hand for. Naming anything we come across.
And this week, she asked for one of the things I always name which she had never said before. “Cornflakes.” She said it verbally. First time she’s said the word cornflakes!
Same with popcorn. I made up a video for the word “questions,” and one segment included me asking, “Who ate all the popcorn?” And then I show a video of her eating popcorn. She stopped pulling me to look at the TV screen and repeated another word she’d not said before, “popcorn.”
I am so grateful that I experience little moments of knowing she is taking in what I’m saying. Well, at least she’s clearly taking in the names of things and people.
Another victory is water. She isn’t into water, but her twin is now finally drinking plain water. With her non-speaking twin, I have an eighth of the cup filled with fruit concentrate and the seven eights made up of water. So it was awesome that a while ago, little miss in the photo above drank a cup of water and sometimes asks to drink the entire cup of water I give her to swallow her tablets with. (Hoping that makes sense!)
Another victory for the other three is SPINACH! They don’t like the texture so I chopped up potatoes that I didn’t peel, boiled and mashed them with spinach, a touch of garlic and turmeric.
They finished it all! I was pleased. It’s a struggle getting veg based iron into them. And as for little miss, basically impossible. She likes smoothies though, this one was blueberry smoothie. Maybe I’ll add spinach leaves so they all get good quality iron besides the supplements they’re on .
There’s a lot I could say about motherhood and homeschooling but I’ll end with this because I recorded a vlog that I haven’t edited etc so much would be repetitive if you are subscribed to my channel. SnapType Pro has allowed my son to ‘write’ numbers and letters we couldn’t decipher before. I first bought it for our ten year old and then another for our son. Well worth it. You take a picture of the page you need to fill in or write on and then you type the answers in the blank spaces. It’s made school less stressful.
I’m thankful that my six children are happy, loved and safe. I wish all were guaranteed that. Safety, thoughtfulness, and true love.
Until that day comes when only Love will reign, I will try advocate, answer about how I parent without the yelling, and pray for our children. Their mothers are letting them down. May all loving mothers I know keep on keeping on. Jesus said the angels are always telling the Father about what’s being done to His children. They are special. Strength and patience to parents of neurodivergent and neurotypical children. We have to do this. We have to love. Maybe our love will overshadow the love other bad things going on and we will be our own personal feel good stories.
They said I should write a book 