They said I should write a book

Many months ago, I dreamt my dad had died and told my best friend. He did yesterday. I didn’t want to add it to yesterday’s good news that came hours before his death.

I don’t know what happened exactly. He had had a fall and was taken to hospital with a large bump on his face. It looked bad. (From the photo sent) He also looked thinner than ever. I can’t say how long he lay there with no help. Sadly, he kept rebuffing my brother and I when we wanted to hire a full time caregiver for him. My other in law even (again) got social workers to go investigate but he was adamant that he is fine with the level of neglect he was living with.

Saturday, my husband went to the hospital to see how he was. We’d heard that he was to be discharged as they had said he didn’t need hospital anymore. But when he got there, the hospital said he wouldn’t be allowed to see him-that ward only allowed those who had taken him there too see him. It is Trauma-Frail Care Centre. Weird rules and no rule bending. Groote Schuur Hospital sucks! How can you not allow a one person to see a patient given he was alone!? There didn’t even need to be a swop. He was alone. 💔🥹

I guess now that he has died, we know his situation was critical . But I wish he’d known we’d tried. I don’t know if he was conscious and aware of all those hours in hospital and thinking nobody cared to see him . I don’t know if he was in pain. He’d been put on oxygen but was now off it and when he’d arrived at hospital he had apparently been talking, telling them his eye and wrist were sore.

That’s what bothers me the most. The morgue I got for my mom didn’t do an autopsy for her. They just wrote “natural causes.” I surmised that it was her heart because the doctor duringa previous hospitalization the year before, had told me she was dying of congenital heart failure and she had been coughing for some months at night-something I know comes with it. But I still wanted to know if that was the real reason it if she’d fallen and the back twisting that happened as she fell out of bed is what killed her. I wanted full knowledge. Stroke? Heart? Fall? And here we are again. Stroke? Heart? Fall? Brain bleed after the fall? I’ll never know.

I’ve been up since midnight. I took my Salazopyrin tablets yesterday only because in getting worse and there’s still no word from the doctor. But midnight, I woke up to the room spinning fast as I lay on my right side. I then tried to sit up to go to the loo but the room was still spinning and I felt like I was going to fall over even while seated.

I am guessing it’s the meds so I’ll go off them. But then I’ll lose the little impact it has had. And it does not help that google says arthritis in the neck of an AS patient can cause the same symptoms. I’ll try going off the Salazopyrin even though my knees no longer feel like they are cracking. But it’s dangerous. I even considered crawling to the toilet! It lasted till 1:30.

And then, my non verbal angel woke up at 2am. The other day it was 4am, then 3am and all those times, she stays up. So I’ve been awake for ages guys! And I’m sad for my dad and in pain. So much pain. Typing hurts. Elbows, wrists, thumbs. And my back is getting no reduction in pain at all.

I phoned the rheumy’s rooms and the best I got was that I’ll be copied in to an email going to the Cosentyx nurse who is meant to teach me how to inject it. Except, I don’t have meds to inject! And it’s not like you can the script today and then get the meds tomorrow.

Life stinks. All of it. I am so sad over my dad. He deserved to be treated with love and dignity. Sadly, he chose the person who was living with him who was not loving nor caring. And because he was compos mentis, the social workers couldn’t force anything on him. Hands tied. Bad last memories. And a dad who died with bedsores from home. I am heartbroken.

If you look at the distance between me and the floor, the space between my body and the floor, it tells a story. Black was me yesterday and worse yet, it was PAINFUL. My back was sore after trying. And the trying didn’t last very long.

This is now beyond urgent. This is scary. My right hip is behaving wrong too. Stiffer than ever, and a horrible burning, pulling pain I’ve never experienced in my life till this horrible long night that has just passed. It’s like the joint is freezing up. I would swear it is fusing. I wonder what an MRI and bone scan would show today as compared to last year’s. I have stumbled going to the loo. And when I forced myself to try sleep after the pain woke me and forced me to take a pain pill way too early, I was back in nightmare mode. I dreamt I’d injected myself with Cosentyx and was driving somewhere but then a strange woman took over and she was driving erratically and I thought I’d die in a car crash. I reached my destination – some sort of guest house- and the pain in the front of my hip was so bad that I had to lift my skirt to look at my thigh where I’d injected. My thigh was blue. A deep blue bruise and it was hard like bone and was bleeding. It had been bleeding for hours! Many trails of blood. The hardness scared me. Did I have a huge blood clot? Was I going to lose my leg??

I hadn’t had such vivid nightmares in five days. I also had increased my amytrypiline dosage but then reduced it in the hopes it was just a placebo effect that made me sleep a bit better on the higher dose. I guess not. I needed it to sleep longer and better.

I’m now scared. I don’t want to need a hip replacement. I don’t know if there’s any solution for a fused SI joint. And I know that fused SI joints cause problems for the knees. Knees already sore since Saturday. I lifted my arm to pull my blankets up over my shoulder and my shoulder screamed in pain.

This AS thing is quite a nightmare! Yesterday, I couldn’t reach. Too tired and too sore. My girl was happy but sad that the holiday was because of increased pain.

And no, I didn’t have any Salazopyrin yesterday. I’ll start again today though my knee did start again before yesterday… This probably is so incoherent. I just needed to document where I am. And no, no answer from the rheumatologist either. I wish this was an issue a GP could solve. All I need is a prescription for the Cosentyx! And lots of money when it arrives at the pharmacy. But I need to try because sniff is too awful to bear.

I was dizzy while lying down. It felt as if I was rolling off the bed! It was CREEPY! I turned on the light, wanted to get up to get my pain meds and oh my word, the room was spinning. And I have a heavy feeling in my head. Middle of my skull. I was so scared I even shouted out for my husband who was in the closet area eating before going to work. I was really scared guys. It lasted for too long and was so severe! I thought I’d need to go to hospital. He had that kind of dizziness when his kidneys were failing.

I read that Salazopyrin causes dizziness but the advice is, “Don’t drive, don’t operate heavy machinery and sit till it passes.” What I have experienced was worse than what seems to be something so trivially written of. My head still feels wrong. I’m still shaky. And I don’t know that it IS the salazopyrin. Add the kidney effects it has to my already not good kidney function and you have one very worried patient.

I don’t think I’ll take any today. Which means even more pain than ever. Things have steadily progressed while I wait for the next biologic. Went to church and someone who just greeted me only, wrote to say I looked tired, and asked if I’ve begun the Cosentyx. Needless to say, that made me happy and sad. For someone to understand that it’s linked is cool! Better than any concern and care, deeper and … Nobody in my family ever cared even when I told them I was about to switch off for surgery. They never asked thereafter how the surgery went. They don’t know anything about my current trials and tribulations because they wouldn’t help any. So it means a lot that someone gets this stupid diseases!🥹Also, the pain was horrendous. My knee, back, shoulders, neck… It was all over, but the knee and back were the worst. And when I got up to leave, having taken a short break and stood up before sitting down again, I couldn’t help but limp. My body didn’t like sitting for those few minutes! I limped down the stairs where I came across someone coming into church who asked why I’m limping. I can’t explain AS… He was a funny Malawian man. Funny because he speaks his mind and sometimes his mind is crazy. But he always shows concern. But nobody gets AS. None of the other Malawi people I’ve mentioned it to, so I just told him I was in pain.

Ammy, poor nine year old Amarissa was so scared I’d fall down the stairs that she even told me to hold onto the rail.

My sweet boy said, “I’m so glad you joined us, Mommy,” as we drove home. I wasn’t. I regretted having tried! But I am happy he felt happy.🥰

I’ve never suffered this much after such a short period spent seated. (Ok, the drive to that church is longer than the distance to my other appointments but still…)

And the breathing. The toilets are down some stairs. Stepping was painful. Walking up left me struggling to breathe. Singing hymns, I struggled for the first time ever. I kept telling myself, “They must be singing very slowly. That’s why I can’t hold the notes. It’s not me, it’s them. Because if it’s me, I’m in big trouble!”

All this led me to email the rheumatologist again. I need to try Cosentyx. I need to slow down what’s going on in this body of mine. I’m now really scared. Yesterday was our usual grocery day. I wanted to cry from pain. I wanted to weep in frustration. My legs didn’t want to move. It’s like my pelvis was freezing up on me and my husband kept having to slow down. This is me! The one who he used to say was “racing ahead.” Now he has to slow down for me.

I feel nauseous. I feel sick. I feel sad. And I’m waiting for plumbers as we have leaking pipes in two different areas IN OUR WALLS!! I just want to try lie down. I want to be comfortable – which is not really presentable for strange men. We can’t do bras. We can’t do clothing, really. I’m not teaching school today unless a miracle happens in the next two hours.

I’m in pain but scared to take any pain med in case it’s the cause of this attack. But not taking it will be bad. Look at Sabbath. I had taken one and the Salazopyrin but was visibly struggling.

What a mess. I hate AS. And my fingers are becoming more painful as the hours pass. Sorting laundry – ouch. I just want to lie down with a hot water bottle in my hands. The number of times I’ve had to erase cos they don’t want to type properly. Ahhh!

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.