Author: Grace by any other name

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.

If I have ever spiritualized your suffering instead of empathising, forgive me.

If I have ever told you, “Oh well, it will make sense one day” when you tell me of incomprehensible pain, I am sorry.

If I have spoken at you instead of listening to you, I apologise.

If I have made up a silver lining around YOUR cloud of darkness, I was wrong.

I will sit with you, I will hear you, I will try imagine what it is like, and I will weep WITH you.

I will listen, hear, and feel your experience. I will not sermonise, spread false cheer and trivialise your here and now moment by moment anguish by making you look at a heavenly future that doesn’t undo your current agony. I will ask, I will not tell.

This is something many Christians do, and as one of them, I hope I never did it to you.

While waiting for my husband to come collect me, a nurse asked a patient’s mother if she could speak Afrikaans, to go assist a gentleman in another ward…

As we were paying for my medication, the woman came out, telling us that her Afrikaans is actually not that great.

Then, we heard the nurses telling the man that he should have had a driver picking him up we signed for, and that he should not leave. He was insisting. So they begged him to at least wait till their shift was over so they could walk with him to the bus stop. He refused. We asked the nurses where he lives, because I told my husband, “ I’m so dizzy, there’s no way this man will be safe in my state, walking to a bus stop and climbing on etc.”

They said he lived in Atlantis- a mostly Coloured area further away than our home is. We offered to take him to the bus stop in our area..but as we drove, we felt he should just be taken all the way to Atlantis, so they dropped me off (sitting was SORE!) and kept on driving.

So, this man has seven children. He lives with his children and his grandchildren. He works in a factory and he was about to go to work! That’s why he didn’t want to wait for the nurses to finish their shift! He said he’d asked them for written evidence of his surgery to go and show his boss to thereby ask for the night off, but the nurses apparently told him, “We don’t have paper here.”

If we’d known, we’d have tried to insist on SOMETHING! And they’d cut our identifying bracelets off so he didn’t even have that. He was there for a urethral procedure so he couldn’t exactly show his boss… Hw said that his boss fired people for bringing evidence late, and the nurses had told him to go back the following day for a doctor’s note – too late for him. So he was going to work… Dizzy. In pain. To keep his low paying job.

He refused to be taken all the way to the town his job is in, said my husband had already done too much, so he dropped him off at the Atlantis bus station.

Life is hard. You’re desperate. If you don’t work, none of you will eat. And so, you force yourself to go to work the very day you’ve had surgery. It’s as if apartheid hasn’t ended. He lives far away in the Coloured area, and has the kind of job set up for Coloured people, is oppressed at work and there’s no hope of an improvement in his lot.

Sobering.