They said I should write a book

John 13:35

By this shall all men know that ye are my disciples, if ye have love one to another.

What is love? Love in the Christian sense. Is it to be okay when you see your brother doing what you know will cause him eternal damnation and not worry about him? Or is it to try show him the way through example if he has already heard the truth and you’ve tried to speak it?

What does it mean to speak the truth in love? It definitely doesn’t mean water the truth down so they can’t even tell what you’re saying. But it means to be kind, sad, not exacting and harsh. It’s to make the cord of whips and overturn the tables, but not to use the cord on any human.

Is it love to hate a cousin because they live a life purer than yours? To shun them, label them, abandon them while they loved you no matter what spiritual state you were in? Is it to shut them up for speaking truth, hurling hurtful words at them, or saying hurtful things to others about them, which will invariably reach them anyway?

What is Christian love?

I see lots of it in the ones who other ‘reformers’ would say are lost. The offers to come clean my house have come from more of the so-called lost than from reformers. Literally only one woman who wants to be sanctified has come. I asked one lady, “But why do you love me so much?” (Context being how my own family that lives like her but I’ve never taught or rebuked don’t love me because of the way I live, yet she can love me, someone who she has heard verbally rebuking certain choices she is still making.)

She said, “You know…I feel like a big sinner compared to you and I feel like hiding from you. But I can’t. You’re caring, thoughtful…”

That’s the essence of Christian love. To not water down the truth, to not change yourself, but to still care about others. It should work like that no matter who we are. If I’m living a life on the broad path, why can’t I extend the love I have to other broad path walkers to those on the narrow way? After all, I might one day join them. Imagine how much better it would be if we already have a relationship and then we walk together. Less awkward than if I vilify you then have a Damascus experience and realise I should join you instead of hating you. Remember how cautious the believers were when Paul suddenly pitched up when all along he’d been the hateful Saul?

Truth is- there ARE only two ways in this Christian journey. And I find more love and understanding of my choices from non Sabbath keepers than from my own blood that keeps the Sabbath. That is very sad. That is not how it should be. The world teaches us that blood has our back no matter what. In my case and in the case of a few others on the narrow way, that’s not true. And so, we form our own families- forged together by love and understanding.

I was worried that a month’s break would take me back to the first immediate reactions I had. The erupting volcanic stomach, the thigh pain, the big welt on my thigh, the headache… Nope!

It went perfectly. And by the time I injected myself, the numbing effects of the Emla cream had worn off, but I went ahead anyway. It was a mental block making mg me use Emla to numb my skin and I’m done with it. No more buying Emla when the tube is finished. I pierced it despite the resistance and it went perfectly!

Enbrel injection number 7, done and dusted. Now, they do say most side effects start a day later, and that did happen with me. BUT at least I didn’t get the immediate ones I had last time. I hope I feel normal tomorrow too.

Sad that ‘normal’ means, “In pain, limping, taking a whole day to cook one meal which I’m still cooking at 20:30 and that meal doesn’t even include MY substitutes for the things I can’t eat…” Normal stinks. Normal isn’t nice. But..it could be worse!

And another perfect thing is my angel.

More words. PURPOSEFUL SPEECH! We’ve searched high and low for a special centre for her but the two suitable ones don’t work. One has no space. The other wants them to wear shorts and short-sleeved T-shirts. That’s not us… And the others are too far away. The fuel would kill us. My one option is to look for a lift club for her and hope it charges less than the fuel would. It stresses her dad a lot that she can’t express her needs and wants. We both want her in a specialized centre for her own growth, but also for my sake. I can’t teach when she is pulling me around. But for my husband, he wanted to know he had tried everything he could to get her the help she needed. (On top of the therapies we will be doin.)

Can we just say how expensive these places are!? It’s like buying spectacles every month. Huge sacrifices would be needed.

Back to the perfect… She still calls her dad “Dinosaur!” She still doesn’t call me anything. But she now pulls and speaks! She tells us when she wants “some cereal” or “soya milk” or “mingo” (mango) or “some grapes.” Haha, yes, there’s a theme. But she also says “bocks!” (Wooden blocks.)

And..AND!!! When her dad was pretending to take her dried fruit roll away from her, she told him (what we always say when she wants more and more food.) “Not for you!”

Perfect context.

The funny one was the door one. She realised she was tired of being outside with her siblings and wanted to come in and find me. I always close my door when I’m lying down to rest from pain so the door had been closed…She pulled her biggest sister and told her, “Some doors!” Ie. “You’d better open the door and get me in!”

I loved her with the lack of speech. But I hated that she could not express her wants. I wanted more for her. I am relieved for her sake that she seems to be getting somewhere! May the trajectory continue🥹❤️

As for behaviors… I’m leaving this post on a light note! Let’s celebrate the speech for now. 😉

This is so..lonely. Everyone has moved on but I have INCREASED pain… I wish I had people who have gone through the procedures I’ve gone through. The surgeon didn’t give me ANY guidelines at all.

So, I turned to Google.

The NHS says I should only do proper exercise after four weeks. I’m only week two today and I started a while ago. What if I’m the cause?? I will blame myself so much if when I go to the urologist, he sees incomplete healing.

I have the email address for the urologist’s office but they have not been replying to my emails. And calling is overkill. Well, the elbow surgeon said I should not ask questions and made me feel like a total idiot for asking when I can resume full exercise. I didn’t realise this surgery was that big a deal till I felt the pain. And till it took longer than I thought to be painless- which instead of becoming painless, yesterday got WORSE- sudden attacks of sharp pain.

I think this is the part I hate most with chronic illness. The isolation. Nobody to share experiences with, nobody to check if what I’m going through is normal or if I’ve damaged myself. There isn’t a forum for people with my surgery. No information. And even those who know me personally, we’ve moved on. No encouragement or prayer specifically on this, and I’m not going to ask, do you know how much I’ve asked for especially on behalf of my children lately?? Yesterday I updated someone on a symptom that seems to have passed and I didn’t even get a response to THAT. To be fair, she hadn’t actually asked how recovery is going, I just assumed we cared about each other that way. Which is unfair of me. As I said, people have moved on from surgery. And I think..I think this is something I read long ago in someone else’s chronic pain blog…She feels worried that she’s boring people, so she keeps quiet. That’s where I am now. When a positive is ignored, no way I’ll share a worry. That’s the problem with CHRONIC…if it’s not the illness, it’s the illness and the various surgeries I’m having done. And the sheer amount makes no sense. It’s not normal. Is it linked to AS? I don’t see other AS patients with half as many ops (not linked to AS line neck fusion or hip replacement). So, I blog to process. And so that if anyone else ever hunts for info, they find it here.

Don’t exercise too soon. Ask your surgeon when you can start. And no, AS doesn’t take a break just because you’re undergoing extra ‘stuff!’

Man was not meant to be alone.

But THIS man, feels VERY alone in THIS.

I’m scared to even do my injection till the pain is fully gone though my rheumatologist had said it’s ok to start from tomorrow.. I don’t know…It’s..LONELY.

And THIS loneliness is something I know many chronically ill people feel at some point, no matter what their specific situation is. I wish I could make things better for us. What I can do, is show you you’re not alone in it. Let’s be lonely together.

And then, someone asked how I am and for a photo of my last born. I’m about to unleash the whole truth. AS, everything. Only because her question made me weepy. I’m obviously not having an awesome day!🫣

But hey, I’m on YouTube! You can find me if you search for The Ankylosing African Sabbath-Keeper.

I asked the lady who had referred me to the rheumatologist what their experiences were. She said the admin lady is DEFINITELY awful. Her husband even referred to her as a female dog. He too tried to get an appointment for his now late father and she never set one up. His daughter (Both have AS) absolutely hates the woman. She says she’s cold and terrible.

I’m glad. I’m glad I’m not imagining the coldness. I’m glad I’m not alone. The wife (That’s who I’ve been communicating with) said that she suggested to her husband that when he next goes in to see the doctor, he take his complaints, his daughter’s, and now mine as well to the doctor directly. I told her I definitely endorse that, he can freely mention my name.

But it also is sad. Because this means it’s her character. And I don’t see her being fired. Some people are just BAD at their jobs and the doctor doesn’t have time to be following up to check she’s doing it. I mean, if I’ve told you to phone Doctor so and so and another patient is waiting to come in, when will I even remember to come back and ask if you DID schedule that appointment when the next patient also probably has an instruction you need to follow?

And the heart. You can’t change someone’s heart. They need to desire for it to be softened. They should already have a love for suffering patients. You can’t give them a warning that will suddenly make them caring.

She needs a Damascus experience like Saul. Only One from above can show her where she is going wrong. And I get the feeling she’s not ready for such an experience to come from us patients.

More than ever, this has made me understand something. People always used to say that I listen to them. I remember their issues and they felt comfortable telling me their sorrows. One even said she loved me because without me she’d have nobody who cared about her worries and challenges.

If I only had friends like Karin (I do have one. I no longer answer fully when she asks how I am.) I’d also feel seen if I suddenly found someone who tried to immerse themselves in my life. Who cares, who followed up and asked how I am doing after my revelations. We need more of that kind of heart. A heart that tries to bear your burdens, imperfect as it may be. But the attempt is what matters. And when mistakes are made, grace is freely given because we know you try. You try to understand.

May we be that kind of brother or sister to our contacts. May we be a soft place to hide from the hardships of this life. May we love one another as Christ desires.

I have a lovely new rheumatologist. She ticks all the boxes. But there were things not done that should have been done. Appointments scheduled that never were. Links sent which never came.

But I brushed it off. Kinda.

Then earlier this week, Dr Rheumy herself sends a voice note via her office manager. Now, this is something the second rheumatologist also did- where there’s only one email address that both rheumatologist and office manager access. No direct line of communication with my doctor at all. I didn’t think much of this at the time until the voice note.

In it, Dr asked how I’ve been doing on Enbrel, and suggested that a rhizotomy might be the way to go for pain control. She also asked about the pulmonologist etc.

I then responded to her question. I told her I’m NOT doing well at all. I’m in pain. I sometimes limp. I even gave specifics of when the pain becomes unbearable. I was honest, vulnerable and real. I told her I’ve even added my own pain medication to the prescribed one and I’m still suffering daily.

I also added that I’ve become less mobile since August but i acknowledged that I’d had five weeks of the injections then a break, a week on, then the break thanks to surgery. So who knows..? Maybe I’d feel better without the breaks?

Guys, no doctor had ever checked on me and asked how I am. And remember, she is the rheumy who added pain meds (Which I sadly had to stop thanks to my wonky kidneys) without my even mentioning during our face to face that I’m not coping. I sent her voice note to close friends, showing them how blessed I was.

Wow… A response came from the office manager. Basically, she said-This is the TONE we ALL got from her response , “You need to have been on Enbrel for a full three months before deciding you feel terrible on it, you idiot. Other patients are doing well on it so you have no reason to feel otherwise. Wait till you have re-started and have been suffering for another three months and THEN get back to us and start whining.” (The parts in italics are the TONE we got from this short, uncaring, cold, dismissive email.)

I asked my fellow brown people. I sent them the voice note, my response to it, and the admin’s response. I sent it to my white people. We all agreed. This office manager woman is dangerous. Firstly, does the doctor know she responded to my email? Did the doctor herself READ my email? Or did this woman delete my response to her? Why is she talking to me like I’m impatient? I myself mentioned that I do realise I’ve taken a break. More importantly, I didn’t just suddenly write and ‘complain.’ I didn’t even MENTION that Enbrel might not work for me. (Which it definitely might not! Duh!) I was replying to a question asked by my doctor.

Where does she come in?

I waited in vain, hoping the doctor would respond. After all, this was on the back of her having contacted me to ask how I am. And she had mentioned a possible solution to the pain.

Now, I don’t know that she got my reply. I don’t know anything except that we all agree that I’m not safe there. It’s so bad that my other acquaintance of the paler persuasion even spoke to her mom about the office manager’s cold hearted, patronizing tone and begged me to see her mother’s rheumatologist who is quite far from us.

I wish I could say that I was imagining this. But I’m not.🥹I sent the communications as they were, and everybody saw it. I didn’t even need to justify why I was sending it or argue my case.

They saw it.🥹

What are we meant to do??? If I was in Joburg I know where I’d be looking. There’s one type of doctor where I’ve ALWAYS been treated wit respect and kindness. Where both the office manager and the doctor have both been guaranteed to see me, an adult with big problems. And sadly, there’s no rheumatologist in our province who belongs in that grouping.

I told my acquaintance that she can suggest her mom’s rheumy, but she isn’t like me. So they need to find out if people like me are treated with dignity.

What will I do in the meantime?

I’ll ask the office manager and the doctor (whoever happens to read the email first) to send me to someone who won’t respond to me the way I was responded to. This is a lifelong disease. I need to know my health, life, care is safe with whoever I’m paying to keep it as safe as possible.

Wish me well. To ignore me when I’m crying out, is despicable. I’m thankful for the ones who can’t let it go/forget about it even days later. Because I too can’t. Knowing I’m not alone helps a LOT.

There was a White patient (young lady, maybe in her 20’s or early 30’s) next to me who had surgery on her leg ACL I believe. I didn’t hear properly. Her mother was there with her. The physiotherapist came in and said he’d help her walk. They got her a pair of crutches -mainly for pain as he told her her knee was more stable and able to bear weight.

She was terrified. I am pretty sure moving her leg was already painful in bed. She swore as she got up (and apologised.) As she tried to stand, she started crying from the pain. Nurse who was meant to be removing my catheter called the mom and told her to LEAVE!!!😳She asked her to get out the ward. When the physiotherapist questioned her, she said that patients act up when their parents are there! The poor mom had started walking out till the physio told her she could stay if she wanted.

This nurse (who had already made me angry when she wouldn’t do what the doctor said quickly enough despite him urging her to hurry up) then said to me in isiXhosa that when parents are around, patients become crybabies and whine. I didn’t even know what to say to her.

I’ve been the patient who is in excruciating pain when needing to walk. I’ve been alone. Believe me, I’d rather weep with a supporter there and keep trying, than to weep inside with nobody to cheer me on or encourage me. I was alone in a ward. I felt awful. And I thought I’d collapse with nobody to help me up. If I had a lovely mom like the patient had, I’d have definitely wanted her with me! And you know, it’s not like the patient was refusing to try. 🥹

We need to do better. How dare she chase a mother out? And why was she interfering anyway? When I answered the survey for the hospital, I mentioned her behavior and her name. I’ve had her before whenj went for my de Quervain’s surgery. She’s very brusque. It’s scary that the mom was ready to leave just because she was bossed by this nurse. Who knows what else she’s said or done that made a patient’s suffering worse?

I’ve learnt to advocate not only for myself, but for anybody else who is marginalized. I hope they talk to her and she listens. I hope the patient is feeling better with each passing day.