Author: Grace by any other name

I won’t believe I’m done teaching the older two till their results come and they have a place at uni.

I will believe that my life is super complicated and that home education for special needs children when yourself have special needs is hard. Very, very hard.

During the bone B density scan, the lady conducting it asked if I have children and about pregnancies. Obviously, that led to us discussing my two awesome adoptees. And with my being sick and taking all the children myself, she was blown away. 🙂 She also said that people who GC adopt should automatically go to heaven as very few would do so.

I’ve never really thought of character development, Christianity and adoption from that perspective. I wish I could just waltz into heaven! She said that the path of suffering God has put me on is not for the faint of heart. I don’t really ever stop and think of it because I’d be depressed.!

But I can’t! So I’ll stay here on earth and look forward to the future.. when my resting days finally arrive. What a glorious day that will be.

Finger misbehaving still.. Pain increasing today.Let’s see what tomorrow holds. Today was fine-ish. Let’s hope tonight brings more sleep than the norm. 🙏🏾I have children to teach!

Dear Medical Diary,

On Thursday, I was rushing to get into the car for my bone density scan and closed the door with my elbow sticking out. Elbow got smashed by the door towards my face. My hand was holding my car key and that car key then went smash into my eye.

Friday morning, I saw the opthalmologist who told me it would heal in a day and said that my eyelid was covering the laceration (cut) so I didn’t need antibiotic drops or anything. I asked him if he was sure, given I’d used Enbrel which I’d been told slows wound healing. (Which is why you go off Enbrel at least two weeks before surgery.)

It’s now Sunday and the pain is still the same. Every blink is torture. Night time eye pain wakes me and the redness is not going away yet either.

I’m seeing even worse discoloration, spreading, than before Friday and I’m not happy. I really hope it hurries up and heals. The pain from blinking is like someone is punching my eye. This is definitely not healed after a day. Aaarrggghhhj!

You’re in everlasting pain,

Me

Jesus chose very specific people to be His best friends. It wasn’t Pharisees, it wasn’t Saducees, it was humble humans who wanted to know Him more. People who were willing to be poor like He was, so they could be rich in His works.

I read the first chapters of 5 Testimonies this week and I was refreshed and revived. And I felt as if I was being acknowledged. Going no contact with toxic family is not the norm. Many want me to continue being a victim of abuse. No thank you! And so I have been encouraged by the Bible that tells us to turn away from such, to flee the workers of iniquity, and upheld by those who live by principle, not be feeling.

Not only is it about protecting myself from more hurt and harm, it’s about making sure I am not allowing my mind to be filled with their unholy thoughts. Only a fool will think they aren’t going to be influenced by people refusing to be influenced by God. I need to be careful and be grounded in truth. Only.

This passage spoke to me. It told me I was on the right path. And yes, it is extremely painful to separate from associates who don’t want to fully associate with God. It is. It’s not pleasant to have to bid farewell to those you love. But if I’m truly converted, I will.

Hastening… Lingering is not good. Look what happened to Lot’s wife.

And so, thought right, thorny and lonely and hard this path is, I take it knowing it’s the path set before me.

If you have any condition that beds this medication and you haven’t begun yet-be warned…

I’m not sure that I will continue the Salazopyrin! The headaches, abdominal pain and other symptoms are building as it builds up.

Most reviews online are bad. Many people have ended up saying it’s not worth it and I agree. I don’t know..

I just wish we’d all find cures for all our incurable diseases. And I wish the cures were gentler than these ‘treatments.’ The swelling itself seems to be responding to the yellow devil, but the other pain it’s causing and the time spent in the bathroom is bad. And those joints it’s meant to be working on are still painful and stiff, though I do know it takes weeks and I’m not yet on the full dose. I don’t even know if I’ll have recovered enough to get to the consultation regarding the bone scan!

I actually feel hopeless and distraught. Trapped and suffering. Any drop of water I take, starts the loo trip and awful abdominal pain all over again.

I hate AS. I love God. But I’m struggling. I dreamt I found a learning centre for the children and was so happy! Alas. I’m still homeschooling while sick and sicker still because of treatment.

I feel so sorry for chemo patients who go through even worse. This is hell.

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.

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.

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.