They said I should write a book

I see books answering why Christians suffer.

As I’ve said before, why shouldn’t we?

I don’t get why we’d assume that following Christ gives us immunity from trials and suffering and pain.

When you know your Bible, you know many good people who went through terrible things. So one thing I can tell you I did NOT do was to waste the night asking why me. Not in the sense of “But I don’t deserve it!”

What I did during those hours was try sleep, was go take two Panados and try again. Then I read a book by a British foster carer (All the ones I’ve seen have been by British women. Maybe Americans aren’t allowed to write even under pseudonyms like the Brits?)

I told myself that the parting is exactly why I preferred to adopt. I can’t. The mourning they go through, the mourning their bio children go through when the children find adoptive families or go back to their parents or into a different care system is too painful. They are stronger than I could ever be.

And it explains why the foster mom seemed so sour when we got our girl from her. Actually, I know it is because later she said she didn’t like a couple that adopted one of her babies and then said insightfully, “But I think it’s because I don’t think anybody would be good enough for the baby. I wouldn’t like anyone!” It took her a while to warm up to me. And it was only after we both had lots to say about how bad the adoption agency was. (Remember how she asked ME why she had to fetch our baby from a baby home as an emergency placement and care for her fractured arm? Why was her arm broken? And why didn’t they tell her anything? Did I know anything? And as you may recall, I only knew because a different foster mom told me the truth.)

I asked God how I’m meant to parent when He allows me to suffer so much. I also prayed for people -my friends, my children. Lots of time to pray.

I emailed the rheumatologist to ask for stronger pain meds.

I wondered if I’d done too much work during the day.

And I went to the loo a few times.

That’s what I did all night long. Then I got up and washed my hair.

And I’m typing here listening to my out of control children outside and wondering how we will survive all these days with no ADHD treatment. Last night was AWFUL. And it’s almost exam time for my teens.

I googled therapeutic Omega 3 dosages and found that it’s in dispute that high doses actually help anyway. Not what I wanted to read. So, when I go fetch my meds this morning, I’ll look for any other supplement that promises me help while I continue the Mentat and Omega.

I had LOTS to think about!

I regret it!

Firstly, that pharmacist was WEIRD and I need to take care of myself better. She said my needs would be expensive so she would give me much less of the Synaleve than what was prescribed. I did the baths and agreed. And honestly, I didn’t feel much difference in my body on it so didn’t mind that much. But I found it off putting because I hadn’t SAID I can’t afford it. And she said I must just take it when I need it.

I did tell her I would ALWAYS need it as I have a chronic and progressive illness and am waiting for biologics but she didn’t get it.

I didn’t stand up for myself.

Then, she offered a generic for the Trepiline. It’s a tablet I have been given before-for also issues and post-op for nerve pain. The pharmacist offered the generic because it’s apparently easier to break in half (They always prescribe only half a tablet a night.) Now, that was a good reason, and I’ve always heard that genetics are as good as the original AND cheaper.

Never again!

Those blue tablets, Veikerin, are even HARDER to break in half! I actually had to use a cutter! And, I woke up with a massive headache that steadily grew each day in intensity till Sunday when I also had a vomit attack.

I don’t know if the two were linked but both were awful. My children thought I was dying, and the force of the pulling so bad I was convinced I’d bruised a rib and turn some mesh stitches. And still had the headache from hell.

I then tried again on Wednesday, to test if it really WAS the generic. And yep, headache again the next morning.

When it comes to Trepiline I’ve learnt my lesson. No generic!

I wonder if I’d have spent my whole night awake due to pain if I had it in my system. And the pain is certainly worse than with the Synaleve.

I ordered my full dose. And spoke verbally to a pharmacist telling her I wanted my original Trepiline repeat, which she typed into the system.

Let’s hope we don’t have a repeat of tonight. I’ve never had NO sleep at all because of AS pain. Broken sleep? Yes. She only till 2am? Yes. But no sleep at all???

And no relief in the unconsciousness of sleep received m from any painkiller including nothing from the Tramahexal the rheumatologist had also given me? It’s a first.

Insert a word that has been ruled illegal. And finish off the statement, “These Blacks are all the same…”

Or what the one guy said to us, “We Coloureds don’t like Black people. Especially Xhosas. They’re all lazy.”

Yeah, racism is built on a lie. It’s evil.

I wish I could show all the racists in our country articles such as this one from News24. A group of XHOSA residents trying to fix the mess SOME other Xhosas made during their protest. I see dignity and ownership. I see hard work and sorrow.

Do you see laziness?

I have seen sweat and tears. I see domestic workers and gardeners. I see shelf packets and cashiers. I see job SEEKERS and security guards. I see road workers and police officers. In my country, I see students who can’t finish university-out even start-because they can’t afford the fees after working hard in high school. I see street sweepers and bus drivers. I see all those Blacks. I see them working hard.

I was told that my mother and sister felt I don’t deserve my “big car” because I’m not employed. (It’s a 7 seater vehicle we got specifically because we have six children.)

I have always liked high cars. SUVs of almost any type. I just like high cars because I feel safer as the car in front of me doesn’t obscure my vision of what’s ahead of THEM.

I’ve been struggling with SI joint pain almost non stop now, even on the rheumatologist’s meds. But even before that, I had read that automatic cars are kinder for people who have back pain. The mother of one of my friends even bought her an automatic car because she has back problems.

And that’s the thing. Why want me to not be comfortable? Why want me to NOT have a “big car?” Does that not say more about you than about me? What do my goods have to do with you? I don’t borrow your money, instead, I use my money to help YOU! The irony!

More so today do I realise that actually, I do deserve a “big car.” I am not worse than any other human being who has one. And I am pretty sure I’m kinder than some who drive big cars. I want everyone to be happy, doesn’t that count? I think I’m a good person. I certainly have no ill intent and those who know me know I don’t fight fire with fire. You lie about me, I’ll ignore you. I hate confrontation and arguing and proving myself right and you wrong. I’ll just pray for you and ask why you felt the need to lie and paint me in a negative light.

Anyway, everybody who is a Christian knows that God desires good for us, but also knows we deserve all the bad. We ARE sinners after all. Christ died for us and we pay Him back with less than half the zeal He showed for us. We truly deserve the bad too. Because-guess what? We are not good. Some of us Christians are trying by His grace to be molded into His likeness. And that does count for something.

But we are still imperfect. So yes, we may be good, but we slip. And I have slipped. So no, I don’t deserve my car. But then, those complainers don’t deserve my money either, yet I give it to them.

So, God allows me to have a car. And I’m to do good with it. Like using it for taking parcels of food and clothing to the needy. I deserve it if I will use it to glorify God. And I do. It doesn’t go anywhere where He would not want me to go. And so hey, I deserve it. And more importantly, I wish everyone else who deserves it could have one. I wish all my unemployed friends could find employment so they could use their money for good. I wish we all had money. Well, those of us who won’t blow it on drink and drugs.

Back to the car. I am rambling today because my children aren’t well so they’re all needy and interrupting what should be my usual quiet/writing time.🙃I was going to say. I was in an Axial Spondyloarthritis group (umbrella term that covers AS too) and someone had asked what kind of car they should buy.

Every single AS patient said the car should be automatic and have heated seats and be high. SUV were winners as they are less painful to get into. And automatic gears means less shifting of your SI joints. And heated seats provided pain relief. I don’t have heated seats, but I definitely have a high car.

If I have to suffer this stupid disease with no treatment in sight, do I not deserve something to ease my plight? Like..a car I don’t have to bend down into? Like the car I drive right now? Every sick person-more especially those who did not bring it down upon themselves after clear warnings they disregarded- deserves anything that will reduce their suffering.

I deserve my car. Let people say what they want. I am ‘worth’ anything positive that comes my way.

If you go and drink and drive and then crash your car, I won’t be saying you deserve a replacement. Just saying.

That’s what our taxi drivers in my country do. They poop in their own beds. They harm the very ones who need help the most. I despise the way the majority seem to behave and think. It’s mindless and it’s evil.

There’s currently a strike going on. Why? Because they kept breaking the law and getting fined but not paying the fines. So our local government started impounding the taxis when they break the law.

And that’s bad.

🙄

I first knew about it when my husband-who was traveling from Johannesburg to Cape Town-sent me an internal message stating that worker’s lives were important and to organise early home time and alternative transport. The strike had begun. And people weren’t ready.

I went to buy bread, and the cashier told me they’d been told there were no taxis so they’d have to walk home. And indeed, husband saw many people walking home from work. People walked over ten km to get home! Unplanned! High heeled shoes, tires grandmothers…Burning cars, trucks, attacking police vehicles and yesterday, stoning normal people’s cars.

The rich could get home in their cars. But the poor who rely on those lawbreaking taxis had no way to get home. Bus queues were horrendous. People waited three hours and some still didn’t get on. Some of the staff at my husband’s work had to be put up in a hotel overnight then we’re dismissed early in the morning to make their ways home. Imagine the children who were stuck at home with no parents!

I hate, hate, hate how our people ‘protest.’ And I don’t pity them. The protests are usually over the wrong things. From a sense of entitlement.

Will we ever come right?

I hate that I homeschool.

Scratch that.

I hate that I’m so sure that I SHOULD homeschool my children. I hate that I’m so aware of my principles and values and of how there’s no affordable (read-government) school that has such values or principles.

I hate that I’m sick.

I got my results back from last Friday. We are meant to be moving me to Enbrel injections (Anyone with any experience, chime in!) and I had the tests done for baseline. And I’m sure to make sure I’m healthy enough to begin.

Now, last week, I told my friend that my kidneys felt sore.

Yesterday, my results returned and I have mild kidney function impairment. I thought maybe I was crazy last week, but it seems you CAN feel pain when your kidneys start struggling.

I won’t even go into the emotional and mental ramifications of that result. I was expecting the one result -and therefore happy that my inflammatory markers were high as it would reinforce to medical aid that I really do have an inflammatory disease going on STILL since my first tests in 2011. But the kidney one was a shock. Yes, I had kidney pain last week but…And I’ve had it before and brushed it off.

Till Google claimed you DO or CAN indeed feel pain.

I don’t know what that means for the Enbrel.

What I do know is that I’m so tired. I thought it was purely AW fatigue but I read that struggling kidneys can also cause fatigue. And I’m not able to fake energy as well as I used to. The cashier today asked, “How are you?”

I told her, “Ag, I’m fine. And you?”

She replied, “Well, you don’t look fine…”

I thought about it and thought to myself, “Well, I’m actually not ‘fine.’ Can anyone with a chronic illness ever be fine when they are sick for life? But when I say I’m sick, I mean the flu etc. When I ask my friend with cancer how she is, I mean above and beyond the cancer, which is always lingering. (Thankfully, it’s CML and basically has been undetectable for YEARS. )

The cashier then adds, “You look tired. But hey, school holidays are over. You can go home and rest now that the children are back at school.”

Me, “Well…”

It’s been a bad day. Pain. Fatigue.

And the silver lining? The twins are both napping! I got to iron a few things and I’m going to mark. I get a breather of sorts.

But sjoe, I really wish I could come home and rest. I know a few people who have had to take disability due to their AS. They get to rest at home. I can’t.

And honestly, even if I wasn’t married to the home education idea, the meds I’ll be on are too expensive. We will never be able to afford them AND school.

So what will I hope for?

I’ll hope that I stop wheezing, and that my meds provide the amazing relief other patients have had.

I’ll pray that the fatigue and pain disappear.

In the meantime, I’ll chuckle the day after another mad day in my crazy house, where all the children go nuts either in teen rebellion or autistic meltdown or have gone plain old ‘angry throw non matching things up in the air because I can’t fit them into each other.‘