Injections, twins and dyslexia

They all say that biologics don’t reverse damage already sustained, don’t improve the level of disability already existing. And, they will work after some months to slow the disease down- if at all.

I don’t know whether to laugh or cry! So, what does this actually mean for people who are constantly and quite speedily getting worse and will presumably continue getting worse while in treatment UNTIL the meds have built up in the system?

Will I be same to have a run of four months(one injection per month) without needing to take a break this time? Will I be she to fully know if this new holistic, Cosentyx, is the one? Or will I suffer too often, and too many “adverse effects” like I did on Enbrel, so we never find out?

I don’t know! I can live in hope though? And so it was with hope and an emptier pocket than ever, that I collected my first Cosentyx injection on Friday evening. I -still- had not received a phone call from the Cosentyx nurse on how to inject so I learnt from YouTube via Consentyx itself.

And I did it. And it was so easy! I don’t have to aim, I don’t have to make sure I inject fast enough to pierce the skin. Sometimes, I’d be too gentle and it would meet resistance and the needle not go deep so I would have to start again. With this one, you take the lid off, put the instrument (auto injector) against your thigh or tummy, press down enough for the sensor in the injector to feel that you are pressing down then the needle clicks and jabs you. You watch the medicine go down into you and when complete, it clicks again. You wait a bit and then remove the needle from out of you. Simple!

I hope it works. I can’t walk at a normal pace, I can’t walk without pain in my leg at the top where it is at buttock level and my right leg gives way or I limp along stiffly or walk stiffly. Also, the very AS exercises I’m meant to do to help slow this down are – some of them- too painful to do and also impossible.

This is the first her or highest I can go with the back stretch now. And this hurts my back now. Who would ever imagine that this position would cause incredible pain?

Doing THIS, raising my legs feet..awful! I feel a pull from the front of my hip going all the way to my knees and it HURTS! I can’t do the below position anymore.

I’m praying for a miracle and preparing for the worst. We have realised that next year when our teens are at university, I’m going to need two helpers. One to clean, and the other to keep the chaos down for me- to dress, change diapers, to swop… This Sunday, the teens had to go write their NBT- National benchmark tests. Many universities want the students to have passed them on top of getting qualifying final year marks before deciding whether to make an offer or not. The nursing faculty at the University of Pretoria wants them and other info before choosing their nursing students. Whereas they already offered the teens places in their other choices. They weren’t here. It was me and my husband and four crazy kids!

Oh.my.word! It was then that it stood out how disordering my children’s specific learning disorders are! With ADHD that comes with dysgraphia, dyscalculia and dyslexia, the mind itself can’t really understand verbal instructions. I knew it had an impact on our school work, but it makes EVERYTHING more difficult. Hands are clumsy, planning is poor. We had hoped our nine year old would help dress our talkative twin while dad handled our heavier twin who still needs diapers. NOPE! My girl couldn’t even help her sister get her stockings on. When it was time for a walk, she put the left boot on her little sister’s right foot! I had to therefore bend down a lot and by 8:45 when I got back from a walk, I was done. Excruciating pain! Miserable. Absolutely miserable and tired.

And it was a walk with drama. Our minimally speaking angel didn’t want to walk. She wanted to go to the flooded and wet park. But she needs exercise anyway, even if it hasn’t been all wet! And her twin wanted to walk to go splash in puddles. (We’ve had tons of rain.) Nobody else wanted the park either. She screamed and screamed and starting jumping backwards like she will fall backwards, I elected to stay home with her but her talkative twin didn’t want to walk with daddy, she wanted Mommy. So I took them to the puddles, some so deep she shouted, “Help! I’m drowning!”🤣

I definitely can’t ever survive the physical aspects of taking care of my children. And we can’t expect any help from our older children.

So…Next year, we will be seeking a nanny who can drive so she can take them to therapy and has energy and love for special kiddies who need loads of love.