This close -and my funny baby

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I came‘this close’ to crying in front of a plumber just now.

AS is a disease of pain. But you get flares where it’s like the whole world’s pain descends on you. That’s today. After a hellish night where it felt like I sweated all night and was therefore made cold when my nightie cooled down, only to get hot and sweaty again, I woke up to a morning of hell.

I do think the NSAID is helping. My elbow and peripheral joints haven’t been as bad. THEY haven’t kept me awake. But good lord, my hips and SI joints are screaming and yelling and screeching in pain. I ended up sending the behavioural optometrist a run down of things my poor angels are struggling with and how I’m therefore breaking their exercises down into smaller steps, and telling her how the exercises are hard on ME too. I can’t bend over and push and pull. It hurts. Kneeling to push and pull (a variation that has to be done on tiles to make them slide up and down) also is a killer. I explained that I have AS and it’s currently not under control. (To put it mildly.)

I gave the children their school work and went to my room and while asking a friend about their sibling, couldn’t take it anymore and wept, asking her to pray right at that moment. It’s not only the bone pain, but something the gynae did to me in order to test something. It’s a cluster duck (heh heh) of pain.

So, the plumber wanted to see me just as I was at my worst point, where I was in so much pain that I couldn’t hide it. So I hobbled off the bed, wiping tears away and hoped I could manage. He could obviously see the pain as he apologised for asking for me.

What about my “funny baby?”

We have a plan. When she doesn’t see me, Twin B is fine. She keeps herself busy and does her own thing. But if she thinks to come open my door or sees me, then it’s game over. I can’t finish my ironing or sweeping or whatever it is I’m doing in peace. She will grab my hand and take me to my closet and want me to pull things down for her. Some of which are markers that she will carry around after removing their lids. Yes, you can imagine the mess. So I try avoid that.

This time, she spotted a box their combined birthday gifts came in, and wanted it. So for the sake of peace, I brought it down. She removed some bath soap that was given, and because of the shape, thought it was toothpaste. She took me back to the kitchen and wanted me to bring her toothbrush down. (That’s how I knew she thought it was toothpaste.)

I took her back to my room, with her protesting all the way. I told her we’d wash her hands. She shouted in anger, “Wash!” And cried even more. But I took her anyway.

I picked her up and sat her on the side of the sink as she cried, turned on the tap, put the soap on her hand and boom, tears all gone! She was so happy! Totally in her element. I ended up having to put the hand towel over her lap as she was now wetting her skirt and leggings. Then she started splashing her face and ‘washing’ it. It was too cute! So much for those initial tears!❤️She also tried to drink the water by sucking at her fingers.

Eventually, we were both done and both happy. And she stayed happy for the next hour❤️

Adventist?

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I was born a Seventh-Day Adventist. I will die one. What that looks like on paper, I don’t know. Outside people used to say we are a cult following a deluded lady called Ellen White. Not at all. Everybody is just living how they want and Ellen White, who gave us the name SDA-is a thing of the past, according to some hard hitting stats that came out last week.

See, I love my church. But I don’t love what we are doing. We USED to be like a cult in that we all used to be modest or get into trouble if we weren’t. But now we are all just doing what want, dressing how we want, eating what we want, and definitely not following Ellen’s writings. We once were banned from watching anything untrue,how that’s all we ever do. Well, you could choose to fill your time with fiction, but with that choice,came the choice to no longer be an Adventist. Now those who don’t read or watch fiction are the outliers. Those who read the Bible and EGW writings are a dying breed. And of course, just because someone is reading doesn’t mean they take to heart what they’ve read.

This church will never again be viewed as a cult. Which is sad, for Christ was one of the greatest Sabbath-keeping cult leaders ever. I wanted to be known for being different and rebellious with my fellow cult members. I wanted us to be one, as Christ prayed. I want us to share everything like the disciples did. To help those who need help and be united with one goal-purity.

All I can do is press together with those who love the Word and love God and love His people. One day, we will indeed all be dressed alike in our white robes and crowns. The best ‘cult’ ever.

Coronavirus

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That’s what I have. My rheumatologist’s office manager told me yesterday evening… AFTER my husband got in from work, said something that made me laugh which made me cough and he had told me, “Oh stay away from me and don’t kiss me! You’ve got Covid!”🫣

Her prescription that included ‘rest’ doesn’t work when you have four children whose brains are all basically operating at age 3 or under and have impulsivities included and teenagers who have gone to write exams.

My husband is working from home. Which means that I have to watch them even more. Like the time earlier on this morning when the twins ran after me when I wanted to wet their face cloths. I turned around and there was only twin behind me, the other was standing slap bang next to her dad and making the meeting come to a screeching halt as I heard the dad explain who she was.🤣

She eventually came back to me but then when I went out as fast as I could, none followed me! One rolled around behind her dad and the other went right back to join the meeting.

After an angry yell by one, the other one came out beaming, a beautiful smile on her face as she told me proudly, “Mommy! I was talking with the aunties and the uncles and daddy!”

🤣🤣🤣🤣

Parenting is fun!

Tomorrow

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Someone asked my husband if my teens have started AS levels yet given he had just recently told the person their IGCSE marks from June this year.

The answer?

“They’re writing two AS level subjects next month!” (That was last month!)

Yep, we dove straight into AS levels after only a two week break after exams. I’d wanted a six week holiday but by day mine, my son was already secretly studying. We began all four subjects but they quickly realised that to wait a year to write all four would be pointless for them as they were almost done with English and Geography.

So with great trepidation, I registered for exams before they were even done studying.

But they’re done. I am scared. A mom wrote how her daughter had been getting all As for IGCSE and past papers of AS levels but tanked big time. Only getting D’s in the exams.

I haven’t told my teens that. But I have told them not to be complacent.

We wish results didn’t take so long to come out! Tomorrow is it. The beginning of the end of my homeschool career with my oldest children.

I don’t know where we will go with my middle two. And my one twin-we’reooming at an autism centre with a waiting list so there’s no guarantee for next year… She is signing maybe once a week, but using signs that don’t match what she’s saying verbally.🤣❤️So my only hope and prayer is that we find a method of communication that meets her needs. That will be my goal for her ‘education.’ Next year will be therapy for all, that, I’m sure of.

I think one twin is going to be able do traditional home education. But it still feels like the beginning of the end. Plus, she IS only three years old. So I don’t know what will come in the future. I hope it’s My Father. But if not..let’s see!

Slowly, the time is coming when I’ll only have four children in my care…And for my teens’ sake, I hope it is soon. Cos that will mean they didn’t fail. 🙏🏾

And typical teen, my girl is excited that her brother will be taking them to go write. Though she did read to me that when it’s only teens in a car, the risk of accident goes up by 400%!🤦🏾‍♀️🫣

Yes, I’m grateful each time they get gone without mishap, like when they took three siblings with them to church this Sabbath.

A Man of Sorrows

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Christ was a very serious man. Constantly being harassed by his family, the church leaders, people reminding Him that he was “illegitimate…” Mocked for not attending school…

Surrounded by suffering. Healing the many who came while unable to touch them ALL. And kept awake at night by seekers like Nicodemus or woken up on boats that would never sink while He was on them, trying to rest.

He never rested. Was always seeing the weak, the sad, the heartbroken and the stumbling. Always in a fight either with demons or priests. Almost killed- taken to the top of a hill, and eventually, tortured to death.

His life was lived with imperfect people when He came from perfection. Talk about draining and heartbreaking daily. It’s like me going to walk in a trash heap for 30 plus years! Sitting with people whose odour is foreign to me who spent all my life in a garden of fragrant flowers.

We can’t imagine the order and peace and joy He left to come to our disordered world.

The Bible is littered with heartbreak and injustice. All the things that make us long for a better place. From the fall of man and the first death, in Genesis to the time when the beast will force people to worship him or die, written by a blinded prisoner on a lonely isle. But I love it. I read it and wish I had more time to read more.

Today was surreal. Truly surreal. Only those with true chronic illness and children with special needs will understand how every hour comes with reminders of how bad things are. Yes, we have air. Yes, I have a home. But if you ask me how I am, it would not be me to tell you, “I’m great!” Cos it’s not true. But someone ranted at me that that’s exactly what they want from me.

A sanitized version of my history, and a fake version of my present. I’m not allowed to mention that as I’m typing, my SI joints are miserable, only that I’m glad I can type. I can’t tell you that just vacuumed my room but needed to ask the teens to finish off due to pain and fatigue, only that I vacuumed part of my room.

I’m not a Pollyanna Christian. I’m real. I want to show people that you can love God IN the valley. Not pretend I’m on the mountain peak-that would be lying by omission.

There are great days. Or rather, there are days when I slept for five hours with no insomnia. Yes, aided by medication. But they are there. They’re just followed by children who hide used diapers in wardrobes and skip lines when I’m teaching them to read. I have to remember my medication, and the medication of four other angels.

I will tell it all, or tell nothing at all. I know my Saviour is seeing it all and strengthening me through it all. If HE can bear it, so can all those who bear His name, just like I could bear everything others came to me week about-mothers who insulted their mouths, saying they look like pigs’ anus- I can bear it. Tell me you were assaulted -I can bear it. Tell me your aunt tried to kill you with an axe at your only mother figure’s funeral, I will be shocked and hurt with you. I can do it. And when I’m awake at night, I have more to pray for so I can focus on you not on why I’m awake.

“Bear ye one another’s burdens…”

“I can do all things through Christ Who strengtheneth me.“

I can bear the victory. But I can also bear the war that came before, and the war you will fight till we “study war no more.”

I hope one day, this old acquaintance finds that it’s in being hopeful while in hellish circumstances that purifies us and forms us into His image-the One Who bore our disgusting sins without flinching, living knowing He came only to die, till he breathed His last for us.

Pollyanna Grace will come when we live in heaven. Because there, everything-my present and my recent history after a day or two- WILL be perfect. And I want to experience THAT!🙏🏾

Too Many Patients

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There’s been a loud cry for a while now about how there are too few rheumatologists not only in my country, but everywhere. And some places, there are none at all.

It’s bad when you need to start treatment but have to wait months or years. And that’s before knowing what you have. By the time you see one, your undiagnosed lupus might have killed you as what happened with a relative. And as much as I love GP, they aren’t specialists. My GP didn’t even know what Enbrel was so didn’t get the significance of my having to tell her why I’m being extra cautious when I got sick last week. She had to open her medication textbook to look for it. And had to ask me how to spell it.

Meanwhile, when I ask for an appointment for my son, I don’t get anywhere. No commitment, no response.

Too many patients. Too busy. And we fall through the cracks.

I saw my newest rheumatologist on September 22. She said she’d send me a link to the Back to Action AS exercises done by NASS. I’m glad she was so specific because she made it easy for me to find them myself when nothing was sent to me.

She said she would send a gastroenterologist she works with my referral so they can do a baseline colonoscopy as Enbrel isn’t kind to the bowel.

With my finances in a dire strait, and my not knowing if med aid will pay, I will book one myself for January.

Slipping through the cracks.

What if Enbrel DOES do something to my bowel? But also, I don’t have the funds… And again, remember the gastroenterologist who refused me a colonoscopy when I asked for one??? This year way before Enbrel came onto the scene? THAT would have been a perfect baseline scope.

Readers… It’s lonely. I don’t have friends (good for them!) with AS. Plus it’s so different for each patient that I’d need maybe five of them in order to get answers to some of my questions. And they’d all need to be on Enbrel. Tall order!

I don’t know. I blog when my heart is heavy these days. And it’s been heavy a lot lately. I’m sorry. Truly sorry. Even vision therapy is more heartache than happy at the moment. Early days yet, we only started last week. We’re working on getting rid of primitive reflexes. But it’s needing way more motor planning than my poor children can do. And I feel sad for them. My teens watched me trying to help one to CRAWL …CRAWL and they exclaimed, “ Wow. It seems it takes a lot of concentration and effort to do this.”

There’s a lot that makes my heart heavy. Will we manage to stay on schedule? I don’t know! Especially not with my painful body. I honestly can’t. It’s very physical and your body has to bend down low. If I couldn’t even do more than a half a meter of weeding in the garden…

Let me change topic.

Maybe not.

Sometimes, life is about gritting your teeth and faking it. There are times when you really can’t see the silver lining because the darkness is really that dark that it swallows the light.

Intellectually, I know they are there. I know it! But engulfed in pain, not knowing when I’ll start trying to fight this insidious disease, with my children’s exercises showing me how bad my bones are besides the NASS mobility exercises themselves that I can’t do, it’s really hard to appreciate the good because the bad is constantly there. There’s no break.

And I want this virus or whatever it is to just go so my head and chest feel better and I re start treatment.

All one can do from the outside looking in is bear witness. And I’m grateful to those who try and shoulder a burden even I can’t shoulder despite it belonging to me and me alone.

Yes, I am a Christian. But even Jesus had friends. He didn’t live in a vacuum. We all need some love and support and closeness. And that’s something many can relate to whether dealing with poverty, unemployment, special needs or whatever the most PC term is overseas, or chronic illness.

Let’s keep gritting our teeth. We’ll either die one day, or God will come. Either way, it WILL end.

It’s Just Hair!

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No, it’s not.

Look how neat and cute this girl’s pony puffs are!

I loved my hair. I held nothing against it except for when we washed it in the bath tub and the water would cascade over my face and into my nose and ears. But other than that, we had a good relationship. Sometimes, a young family friend would come and plait it on Sundays and I was convinced that plaiting it made it grow.

I also liked my hair because it was different. In those days, in the Black schools, even little girls had bald heads. But I didn’t! I felt I looked like a girl whereas sometimes I couldn’t tell from behind if I was looking at a girl or a boy. I just felt so sorry for them. No fun experimenting with different styles Sometimes some would have sores on their scalps…

I liked my hair until the day the Muslim girl asked our White teacher why I never won her “Neatest Hair” competition and the answer was, “Because her hair isn’t like ours. It’s different.”

Different meant bad.

Different meant it never looked neat.

Different meant less than.

I had known she looked down on me. I didn’t realise she thought my hair itself wasn’t good enough. I knew my cornrows were very neat. I knew my hair was nice, the other girls said so! Even asking how I got it into my small curls. (My Afro hair- with its natural kinky curls.)

But nope. She hated me. And she hated my hair. It wasn’t good enough. Never would be.

And so, I started burning it (and my poor scalp) into submission. First with perms (I think Americans call it Jheri curl?) and then with relaxers. I tore my hair out my scalp with braid extensions and yearned for long, fly away hair.

My hair was an extension of me. Black. Less than. Not like them. Different. Never good enough.

But today, I marvel at the beauty of our hair in its natural form.

I marvel at its elasticity as I start a new set of microlocks on my teen daughter’s hair.

I marvel at our different curl patterns and its versatility.

Showing off my grey❤️

It’s not just hair. OTHERS have made it an extension of their idea of the value we hold, our worth.

Well, it is not just different. It’s different and wonderfully made. It can win any competition it wants to enter because it’s not less than. Who needs to burn their hair into submission, raising their chances of ovarian cancer in the process, when their hair is beautiful with the texture it was made in?

God made no mistake when He created me to have pony puffs and cornrows. His creation was good enough.

Still An Autism Mom

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We went to the aquarium a while ago. Recently… I was nervous. I didn’t know what it would be like. I pictured myself missing my husband as Twin B raced ahead with him in tow like last time.

I was so wrong!

This time, I was the object of her affection. Which meant that I’m the one who had to do the zooming ahead. She enjoyed the freedom of going walking fast all over the place. I wanted to see the new fish though so the zooming wasn’t achieving MY goals! She won! Though I did double back a few times with her as you can see. And at other times, they waited for us to come back round.

Seeing her happy made me happy. So, I held her hand and zoomed with her as we raced up the wide passages and down again.

Haha. I got down here. My knees protested painfully, but as I was quickly getting up, she came and unexpectedly sat on me. I fell over. As I laughed-after screaming in shock-husband asked, “ What ARE you doing!?”

I answered as if it was totally normal, “I’m falling!” With a “Duh!” in my head for good measure. 😉

Then there was this day. She was tired but not falling asleep so I went in and applied deep pressure by lying on her. She loved it!

Bad photos but good times!

We are still not really speaking to communicate but there are many words! She looks at us intently and will suddenly blurt out, “ Chicken! Pig! Cow! Bubbles!”

But she’s very clear when she grabs my hand and these days instead of leading me to the cupboard to get food, pulls me to the garage and says, “Car!”❤️❤️

And this morning when her dad was singing “no more wars” she stood in front of him and blurted out, “W-w-double yoo. War!”

I love those moments because what she’s saying matches what she’s thinking or hearing. I told my husband that given she’s so intentional and we get what she’s referring to at these times, then there’s a link with the random words … So, clearly when she says “cow” to me, she’s saying ‘Mom, you’re as fat as a cow.”😉

Guilt

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I’d started typing this on Facebook then changed my mind and came here…

Lack of lumbar mobility

I hated that when it was time to do seated stretches and toe touches specifically, I couldn’t anymore.

I didn’t think…I didn’t know…

This week, the new rheumatologist was the first one to use a tape measure to measure my spine as I tried to touch my toes. (Google says it’s Schober’s Test)

Except, for the first time ever, I couldn’t touch my toes when standing.

How can that be? I could touch them in January when I saw the first rheumatologist?

Today, I decided to see how exactly I am bending. I tried as hard as I could to touch my toes. And looked at my back in the mirror and got the shock of my life.

I tried to get lower but my spine hurt and I could not. My back refused to move any further down.

I looked like some guy with AS I’d seen who was trying to bend. His back was flat.
My back was flat!

And then the worst…

Because I’ve suspected for a long time that I passed this stupid disease onto my children, I went out to ask THEM to bend. We’ve (my oldest girl and I) always said Bk has it worst-if he has it.

Indeed, she was like me at her age of 17, still able to touch her toes.

But my boy, my sweet son who has complained of back pain besides the swollen fingers they’ve both been getting like I did as a teen, couldn’t.

This was his best. And the curve at the top of the spine there is worrying.

Of course, I’ve sent this photo to the rheumatologist’s rooms and asked for an appointment for him “just in case.” I told them how I’d rather be sure it’s NOTHING than to waste 12 years looking for help in the wrong places.

I found this new rheumatologist through my husband’s retired PA whose 75yr old husband also has AS and is slightly bent forward.
His 29 year old son also has it.

It’s one of those that does tend to run in the family.

As an adoptive mom, I will NOT mind if he chooses to save a child from the possibility of this painful disease and ONLY adopts.

Same with my daughter.

But first things first. We need to find out what it is.

I’ve just returned from asking them their plans for building a family. It turns out they’d already decided that they didn’t want to pass AS onto their children she had discussed how they’d only adopt.

Let’s hope their future partners- if they have any- will be as open. I certainly don’t mind not having bio grandchildren. Any grandchild is going to find a way into my heart, no matter how they get into my family.

Better Injection!

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I’m so, so thankful! Last week, I had that horrible reaction not even an hour after injecting myself. I brought the injection day forward so that I’d hopefully be ok by Sabbath – my poor middle two were extremely upset at not going to church.

I don’t get anything. No reaction. No welt. No diarrhea. No excruciating burning pain! Nothing! I don’t know what tomorrow will hold, but I know that today held ME!

AND I had a whole hour of no pain. I could not only tell my middle two what occupational therapy exercises to do for their core, but I joined in with them. My sweet eight year old asked in shock, “MOMMY!! What are you DOING!!??”

Priceless!

Enbrel number 3. Done and dusted. First time injecting into my belly. I’ll be better at it next time.