Rheumy Tomorrow. Museum the Other Day

Telling her I’m giving up. Or rather, I have no more hope left in me. I’m sucking up all the pain tablets I can but getting not enough relief to even feel any relief.

Is there nothing more we can do for pain? Should I see a pain specialist? What can they do? Maybe I should! See, I knew this blogging thing was good for me! I hadn’t thought of going to a pain specialist. Rheumatologists seem to focus on the disease and not the pain caused by the disease. Surely there must be more. I’ll ask her what she thinks.

I did my second Cosentyx injection this Monday and bled for the first time ever. It wasn’t bad. Just weird. Unusual. I’m going to only do my thighs seeing as it’s once every 28 days anyway. I don’t think there’s any risk of the area becoming thick and hardened like with weekly injections. I don’t know if

Life continues as normal. One child pulling my hair and pushing me harder. Some days she’s so happy. Her twin is still into Pharaoh. And school is still hard on me. I’ve failed to find schools that don’t have a uniform, are affordable, and in a safe area.

But the good news is that my teens are definitely- unless they fail their final exams – going to the University of Pretoria next year. I’m so happy for them! I last reported that my son got accepted for both his choices and that my girl got her second choice. Last week she got an email stating she’d been accepted into the The Faculty of Health Sciences!! She will do her beloved Nursing!! Woohoo!

I’m so happy they are going to live their own lives. As I state in a video I posted last week, my mother stopped me from both my first and second choices (I wanted to be midwife or am social worker) because she said they weren’t high class enough. By having freedom to choose, they are living my dream, and it doesn’t hurt that one dream is nursing!🥹☺️ If she changes her mind, I won’t care. I told her dad that they might find they are actually more drawn to something else so to give them some leeway. Advocate Mommy!

We went to the SA national history museum this past weekend. As expected, our Reo motored through and out as soon as possible. I wish she could tell us what she feels. Too much space? Doesn’t like the aircon? Too dark? Too many weird people? She didn’t even glance at any of the exhibits whereas her twin was talking nineteen to the dozen!

You can find the video I posted with more (poor quality photos) HERE.

Edit: I’m not going crazy or overblowing things! Well, I knew I wasn’t anyway! I saw my blood test results after typing all the above. My inflammatory markers have never been this high. Not each time we’ve tested for them, at least. They’ve even gone down a normal 2.4 when I was on Enbrel – for a short time. Otherwise other times it was 6, 5.5… This time it’s 14.4 and our standards say anything above 5 is “High.”

This will really help with my case! I’m truly suffering and need more help than I’m getting. Clearly the anti inflammatory tablets aren’t helping and the Cosentyx hasn’t started (yet.) My liver is also starting to complain. Thankfully it’s not too bad at all. Just gone higher than the norm. My AST and ALT are usually around 7, 18 or 10, 18. This time they were 22, 24. I’m not worried YET because the highest normal is 36. And, my kidneys have stayed stable. It could be worse! But that is not much comfort given how terrible I feel day and night.

Something surely has to be changed, right? Or we really will do nothing until two months’ time when we re-test? How ‘dead’ will I be by then?

Let’s CELEBRATE!

Man, I was nervous for my children!

Many parents in the Cambridge group had complained that there is a huge leap from IGCSE to AS levels. They spoke of children being traumatized after exams, of terrible marks, of needing to start studying as if from the beginning with tutors and taking a further 12 months to truly be ready…

So while my children were excited to be receiving their results this week, I was secretly nervous. I didn’t want their confidence to have been misplaced.

My daughter’s wasn’t! She got a high B and an A! My son..I don’t know if anyone recalls my saying one of his signs of his ASD was how he answered English essay and composition questions… He was so sure he’d gotten an A after the exam but nope, he got a C. And a B. His poor sister was so devastated on his behalf that she wept in my arms for him. I’d secretly shown her his results so that she wouldn’t make too much of a fuss over her better marks, not knowing how he’d done…He wanted A and B only.

You win some, you lose some! Later on, she was able to have a big ole “Yay!!” moment 😊

For me, it’s a relief. They PASSED!!!!!!!!!!!!

I was able to delete my Geography and English folders tonight!! We have a lot to work on. Their remaining subjects are very hard for them and I already see the struggle. But hey for more, most of their high school battle is OVER!!

They passed!!!

Prison Time?

The homeschool furore has nothing and EVERYTHING to do with race. The powers that be are Black. They say that homeschool parents are keeping their children out of schools so they don’t have to mix with Black children. Their response has been to come up with a new Education Bill. One of the proposals is to put home educating parents in jail if they don’t register with the education department. IF they approve your homeschool registration, they want to oversee what you do. They want you to have a schedule with school times that have to be of a certain length each day, they want you to keep your child’s school records for three years, they want to assess if THEY believe your home is ‘suitable’ And they want YOU to hire an external assessor to come every year and test your child. And of course, your curriculum must be according to their standards.

Nope! Must homeschooling parents didn’t register their children even before prison was mentioned. Some parents who have registered have had no response for up to two years. Some have had officials drop in without warning. One was told she couldn’t use the dining room table because the light wasn’t directly above it. Of course, some have had things run smoothly, and others don’t care that strangers pop in randomly. But the rest of us do mind.

My children have never used the South African curriculum. They’ve never been assessed by anyone external and yet here my teens are, with an A average (so far) for their official Cambridge exams. There’s no NEED for someone to assess the children. The parent knows full well what strengths and weaknesses they have!

On the opposite end of the spectrum, are my special two. They have significant barriers to learning. My entire formal school day for them is 30 minutes long. They can’t handle the length of time the government would want them to have. They’ve incidentally begun the academic portion of their assessments -today is the final hour- and the psychologist told me that even that hour with different activities was too long for my daughter, she got “tired.” That’s exactly what I’ve heard from other therapists too. If an hour of varied activities is too long and wears my girl out, what kind of torture would I be putting my child through by making her sit and write for many hours a day?

My son apparently found some of the activities “terrifying” so she had to stop and just play with him. Impossible to do under the government guidelines. She said he was very hard on himself, scared he would fail even though she assured him that he wasn’t being ‘tested. ‘ (My teens are writing exams. Maybe that is where he’s getting the idea that exams or tests are pas or fail and that failing would be terrible. My children carastrophise a lot.😅)

The whole point of home education is flexibility-meeting the child where they are and tailoring their education to suit THEIR needs, not government standards. It’s not like the government will pay for therapy when our children are burnt out from too much pressure.

Also, this would mean that I’m paying someone to come tell me what I know. “My children can’t handle mainstream education.” That’s a huge waste of money! And imagine how stressed they’d be having some stranger doing typical exams with them.

Nope.

Might as well cuff me how. My children’s hearts and minds matter more than government pettiness. And yes, not a few homeschooling parents ARE racist. Most of them ARE White. But they aren’t the only homeschool families in South Africa.

I’ll have to face jail time before I change my flexible, child-friendly homeschooling programs to “doing school..at home.”