No Social Media??

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I’ve always filled in a green anesthesia form but yesterday was the first time I read it properly before signing.

Besides not drinking alcohol (I don’t anyway), operating heavy machinery, driving, making important decisions (that one I did know) and not looking after an infant for the first 24 hours post- anesthesia, I’m also not meant to use social media either!

I can’t agree to that! I’ll be texting my friends as soon as I think I’m coherent. Which I sometimes realise – after 24 hours- I wasn’t!🫣I’ll sign for not posting publicly for 24 hours.

Today’s the day. Remove the growth, check and test, enter into bladder, do some x-rays to check it, and do urethral dilation. Now, I’m not sure why this part. Won’t removing the growth already widen it back to normal? Or is he thinking there will be scar tissue in the way, or he won’t remove it entirely so he needs to widen the passage another way? I hope I remember to ask why when I get there.

Like, what are the chances? Both children?? 🤣It’s certainly motivation to keep going with vision therapy. And I can see us needing to add more sessions at the end of the scheduled ones! It was hilarious to me. I didn’t laugh out loud, I’m too kind. But it was bizarre! One turning nine years old next month, and the other is eight. Why us?😝

My other school aides are Reafing Eggs and Khan Academy and Education.com. That way, they don’t have to write. And as you can tell, I’ve not given them age-appropriate Marks work in ages. (Pun intended) Let’s try build a foundation… It’s shaky though. I definitely see dyscalculia in my girl. She can’t even do age 4 ‘Maths.’ So, we wait, watch, work slower, and figure out the way forward next year when we have a higher medical aid plan to pay the psychiatrist her Paed thinks our girl needs, and the occupational therapist all four younger children will need. I foresee my son doing lots of driving after all the assessments are done because united we’ve got my AS under control, the pain and fatigue will just be too much for me.

I’m also still working on fine motor work. I think I got this activity from The Ultimate Therapy Bundle. Making them ‘wash’ clothes and then use their fingers to grip and open and close pegs to hang the items. My tactile defensive boy was nowhere to be seen till right at the end. My mostly non-talking daughter dumped her sock into his water and wandered off looking for food. I had two out of four valiantly and happily doing the task though! So it’s a win! And I got to see my girl NOT like the grass on her bare feet. Ahh, sensory issues, we’re e familiar with those, aren’t we?

I also bought these Melissa & Doug dress up packs. I like how they catered for not just one skin tone and hair type. I think it will be too difficult for my not talking much twin, but she will enjoy collecting the small pieces-THAT’S her thing! But, she might surprise me!

He eventually realised the boots needed help 😉

And that, was part of our school morning yesterday. The day ended with my girl worrying that I “won’t survive the operation” and unable to sleep, scared of how much pain I’ll be in. All I could do was remind her that I usually get better. She allowed what time I’d be back, if she’d still be awake. I think I will be home before her bedtime… Needless to say, only the teens know that the urologist will be checking for signs of cancer. She already was sad that they need to cut the growth out. And that knowledge and worry are enough for her.

Perspective

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From ‘the patient’

A young friend and I are always bemused by people who lament and so over what is the equivalent of a broken false nail. What we’ve realised, especially in our neck of the woods, is that for many ignorant Black people, cancer is the only word to be feared. No other diseases can ever match the fear that word brings. For me, MND is one of the ones I fear more than cancer. In fact, anything ‘incurable and progressive,’ is bad news. Where there’s no hope, there is literally..no hope.🥹

Let me explain and illustrate what I mean. I have seen this in someone with an extremely treatable form of cancer. As in, she just has to take one tablet a day and she will be fine. She did. Yes, chemo was awful. So awful that after her numbers went down (CML -a long lasting, slow leukemia) she stopped chemo. For ten years she has been lying to her doctor and pretending to be taking her chemo. And for ten years, she’s never had to “change” to a different chemo pill because her numbers have been so low that basically she’s been in remission, though sometimes the levels start creeping up and her doctor asks, “Are you taking your medication?” For ten years, she has hoarded the chemo pills the hospital had given her. So, she has a stash that can control her cancer IF it becomes detectable again-she goes for tests every six months.

If cancer sufferers were allowed to choose a cancer to have, this one, her one, would be one of the top contenders.

I recall the day I told her, “My current infection is getting better. I’m not as sick anymore. But the pulmonologist believes my lungs have fibrosis. They are scarred at the bottom, especially the right side. There’s no air going through. If I wasn’t exercising, he’d be going into my lungs. But because I’m doing what I can to get air into the rest, he’s studies that I’ll have a better chance than others, of fighting infection that settles in there. But he wants a CT scan to see how bad things are.”

Her response, “I’m glad you’re better.”

I told her about AS. I told her it’s incurable. I told her it gets worse. I told her what can happen. I told her my kidneys have lost function. I told her that it can take ages to find treatments that work. I told her I have to do exercises daily to try keep things from getting bad fast. Like opening up my chest and breathing in deeply so my ribs don’t fuse. I told her about the man in our group who had to have some ribs removed because they’d fused and his lungs were compromised.

“Will pray.”

That was it. No acknowledging how scary, unpredictable, weird this whole thing is. I can imagine the more terrified response if I’d said, I have bone cancer. I don’t even have to imagine it, I’ve seen it in how she tells me about relatives I have never heard of, who have been diagnosed with cancer. That’s when I see the fear, the anxiety, the sadness that we AS people whose disease is not yet controlled feel. I see it in those who have to dump treatments due to life threatening side effects. I see it in those who have tried every single available option and none have worked. None.

And so, my friend and I (my adopted sister). Adopted by me.😅) always wonder why people just don’t try to get it. And others don’t even have any form of cancer like this particular person who is wrapped up in her own anxieties. I did call her out. Tell her that her response didn’t match the situation. But she said her problems have made her not think clearly.

Ok then…Scratch THAT friend off the list of updates. I haven’t told her about the bladder op this coming week, nor the colonoscopy nor the gastroscopy.

But you get those who do know. But then they complain about trivial problems. Light issues. Things that have a solution. Believe me, life can’t get much harder than having no family and having no job and no social benefits. Literally living through those who love you. Strangers. Not blood, but ex-colleagues and adoptive sisters. That’s the situation this young lady is in. She knows real suffering. Don’t come to us about a broken fake bail. Don’t come to us crying about one night of insomnia as if the world has ended. I haven’t slept properly since childhood. Ask me about nights spent rolling around the bed, legs cramping. Or stomach on fire. Ask me about arthritis pain. Ask me about IBS flares and headaches and stomach aches day and night.

We don’t mind knowing the trivial. But please, put it in perspective, especially when talking to us whose problems are insurmountable. 🙏🏾 If you want to complain about your boss asking you to do some extra work one evening g, acknowledge that you’re talking to someone who has no boss, and no job and would be so so happy to have a demanding boss -one evening- if it came with a salary. If you want to complain about how boring being a mother is, think about those of us who appreciated the boredom of neurotypical children and are harried and strained and stressed by neurodiversities and challenges so hard that we don’t even post about them because other autistics say we stigmatise them when we share our reality from our position as loving but tired and scared caregivers. How would YOU feel if your child -who meant no malice whatsoever/pushed you over as you bent to sweep sand into a dustpan -sand they had dragged into the house? It’s scary! She’s strong. And getting stronger. What if she never stops pulling me around? How will we both survive being pulled into the road when she’s heavier than I am? It does happen with some autistics. (I know she meant no malice as I was in the doorway. She didn’t know to go round the other way and I was therefore in her way. And she ‘needed’ to get through. She was making a way. She wasn’t intentionally ‘making mom fall.’)

My type of parenting is HARD. I have an eight year old (turning 9 next month) still urinating on herself day AND night. The stench on the clothes is unbearable. We did physical checks and her bladder doesn’t seem to be the problem…I don’t mind light hearted complaints about neurotypical children, cos hard times do exist. Just don’t forget who you’re talking to. Don’t ignore me. If we’re in a relationship, relate to me too, please. That’s all I ask.🙏🏾That’s all we ask.

And in the same way we wrack our brains for things to be thankful for, please also acknowledge the blessings you have! One friend complained about not getting a raise, but she’s been doing MUCH less work than what she was hired for, AND is living rent-free on the boss’s premises. Hello!???

PS. I haven’t even pretended to edit this. Sorry for all typos. They are totally intentional this time as I don’t have time to glance over it right now but I felt called to say this.

She Texted Me!

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I arrived just a few minutes before my 10 o’clock appointment two days ago. A lady walked in soon after who you could just tell, was not used to the setting. If I am not confusing her with a different patient, she knocked instead of just opening and coming in, and greeted me like we were both waiting for an exam or interview. Very different to how others act.

The practice manager asked who she was, and it was ascertained that she was the 12 o’clock lady. Talk about coming early!

After the doctor saw me, while the practice manager was talking on the phone after we’d started fixing up my paperwork and also trying to sort out the next patient, I asked why she’d arrived so early! She said she was new to all of this… Never sick, never been to a hospital, is scared of doctors. And she had never been to this area so has been scared she would get lost and be late. She was “NERVOUS!”🥹

She then said, “I heard you talking. You seem like you know all these things. You spoke about colon what what and the doctor who sent me hear had mentioned colonoscopy..”mispronounced.)

“Could I please have your number so I can ask you things when I get scared?”

Who could say no?

I told her she should not only ask me anything, she MUST send me a text so I can pray for her when she knows when her colonoscopy will be.

She’d been healthy, no bowel problems and suddenly, a low full of blood. And it happened more than once when passing stool. She became terrified, phoned her mom, panicked, her mom panicked… “Do I have cancer!?” I felt so, so bad for her!

I know there are some non malignant bowel diseases that can cause blood. But yeah, it IS a sign of cancer. I told her that I really hoped for the best for her. That I’ve had tumors removed which have thankfully been benign and I hoped that her cause was benign to, but that it is great that she overcame her fears because it definitely needs checking out ASAP and that I too have bladder surgery scheduled because of a growth I need removed which we are hoping is non cancerous. I understand her nerves and have been there for. The thumping heart, the asking yourself if your crazy. I’m glad for her that she has a mom who doesn’t belittle her worries.

So, when the practice manager then asked if she should squeeze me in this Monday, or the next one, though this Monday would have been better, I feared that her case was urgent and she would need the squeeze, and chose the following Monday.

I hope I don’t have anything awful going on in my belly. And if I do, I hope an extra week’s wait won’t have done anything bad. And I don’t mind the wait.

Last night, after we wondered if she WOUKD get in touch, she did. She said she had been emotionally and psychologically spent the day of the appointment but was now reaching out. And yep, they will be getting in on Monday to check out what’s up.

I’m glad she got in touch. We aren’t all veterans. If I hadn’t been operated on multiple times as a child, maybe I too would be as scared as many adults become before surgery. Her mom is very far away. I hope I can provide peace.

Dear Doctors

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You’re allowed to be human and admit you make mistakes. Dear “Medical Fraternity,” you’re allowed to admit that none of you are infallible.

The only sour note yesterday was when I was asked how long I’ve had AS for. I told the Prof that I’ve had it since I was a child but I was just told I had juvenile arthritis like it was nothing. No follow up or extra help was given. Just told to put anti inflammatory gel on my swollen limbs and fingers.

I said that in adulthood, I started seeking diagnosis in 2011 “but it was missed…” He quickly jumped in before I could continue, with something along the lines of, “But these things take a long time to show up. It’s not that they miss it, the signs don’t immediately come up…”

He spoke for so long then considered the subject over with once he’d made his pronouncement that he moved onto another topic, so I didn’t remember to continue with, “..and when my rheumatologist looked at the very first MRI done in 2011, the SI joint damage and inflammation were very visible. The wrong people looked at the MRI and didn’t look for the right signs.”

I hate that we patients are treated like we know less than the medical fraternity about OUR own personal situations, experiences and histories, and I hate how they stand together to protect each other’s reputations at the expense of a patient that is telling their reality. It would have taken nothing away from him as a doctor if he had not interrupted me and if he had let me finish by stating that obviously, I had been going to the wrong medical professionals. I bet if I’d known to go to a rheumatologist as opposed to a GP, or to a back surgeon (orthopedic surgeon) then it might have been found much sooner. But each person is trained only to look at their own narrow areas. And I guess my SI joints aren’t part of my back. Same with the radiographers who write reports saying that all is well…It’s ok to admit that they make mistakes.

I’ve blogged about this before, how even an old friend forgot she was a friend because the medical brotherhood comes first before decency and honesty and transparency. How she wanted me to not hold a doctor to account for not fixing a problem he said he’d fixed. How if I’d gone to her to fix his mess, she wouldn’t have because I didn’t keep quiet about the first one’s mess.

You are human. Accept it. If the IT guy at Telkom can make a mistake, so can you. Stop thinking you are gods because sjoe, those of us who have traveled this road for decades know very well that your feet are made of clay. We don’t need perfection. We just need you to admit when you’ve messed up, and FIX IT. Believe me, we’ll respect you more if you tell us you don’t know how to do something than if you experiment on us then don’t admit your experiment failed. We still need you.

Just admit your frailties and we will accept them just as we accept our own.

Now THIS is a doctor!

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I had an inkling this was a more inclusive practice when the practice manager answered in Afrikaans but then giggled at herself when I responded in English and corrected herself.

She was extremely talkative over the phone. Giving lots of information. More than I needed, actually! And she came across as very kind.

I hadn’t wanted to go to that office. I’d had a bad experience with the gastroenterologist in Claremont. And another Afrikaans orthopedic surgeon also did me wrong, so I was nervous. But the other area where there are gastroenterologists on my network is more Muslim-friendly. My sister was admitted there and the nurses weren’t as kind to non-Muslims as they were to Muslims…

I showed the professor’s picture to my husband, assuming he’d also agree that I was setting myself up for disappointment if I made an appointment at his office. Instead, my husband thought he was perfectly safe! I should have shown him the orthopedic surgeon’s photo then he’d have known why I had a trauma response to his face! They are same-same language, same age…

But that’s where the similarities end.

He was so thorough that he even checked my heart, seeing as AS can affect it. He explained how AS sometimes impacts the intestine, stomach and said the magic words, “..and sometimes they have chronic gastritis…”

BINGO! Remember the gastroenterologist who said it doesn’t exist!? Grrrrr. The one who refused me a colposcopy?

So, I’ll be having not only a colonoscopy, but a gastroscopy too. He also plans to biopsy my wall even if it looks healthy, to check for h. pylori. Five days after my bladder surgery is when I booked for it to be done. I might be too brave having it so soon and so close to my bladder, but I want all the theatre stuff over and done with.

Husband is kinda worried the bladder issue is cancer and I’ll need more surgery on that same date. I don’t know! Maybe I’m stupid to be so blasè about the growth, maybe I’ll worry just as they wheel me into theatre, but I honestly think it’s yet another benign one like the ovarian tumor and the uterine polyp. I’m only worried about the recovery process.

His office manager was also a dear. Very informative, very kind. She definitely said a lot, but she’s lived long and seen bad and good doctors so I forgive her the extraneous stories. They were cute. Just not good for a patient in pain. (She used to work at a large hospital but had taken pension and retired when she was asked if she could fill in for the Prof’s office manager temporarily. Which ended up not being temporary after all.) She too was dismayed that the other gastroenterologist refused to do a scope on me. She muttered, “I wonder who HE trained under!” (Prof does a lot of training and two of the gastroenterologists the rheumatologist had suggested were trained by him-but are not in my medical aid network.

I don’t know if medical aid will pay for another gastroscopy but there’s only one way to find out, right? Thankfully with there having been gastritis found every time I have endoscopic procedures shows them that I’m not just wasting time, and my last colonoscopy was in 2014, so there is no way they’d not pay for THAT.

People, I felt seen. I felt heard. I knew I deserved to be rested and for him, it was an invited thing too. He even told me of a medication that would protect my heart and reduce AS inflammation- he said it’s brand new research. A tablet that is take once a day. Pity I can’t tell my rheumatologist to try whatever it is! I didn’t catch the name. He also suggested ways of dealing with my IBS-C and the worsening of symptoms thanks to the tablets I’m on.

He’s a keeper. He and the office manager truly show respect and concern. It made up for the bad doctors. I told a patient who was in there waiting to be seen that she’s in the right place. I told her I’ve had colonoscopies very often and apparently had one when I was seven years old (I don’t recall) and seen different gastroenterologists and he’s one of the best.

Let’s hope for rapid recovery and that the scope for the colonoscopy especially, doesn’t make things worse for my bladder, recovery. And that there’s nothing TOO concerning inside this body!

Oh, about the orthopedic surgeon… I went to him after two GPs couldn’t help my heel pain and shoulder pain back in December 2021. They tried… They cared. They believed me. The one even tried injecting my shoulder joint with cortisone but the joint was “maybe calcified” and he couldn’t get the needle into my joint no matter what he tried and no matter how many times he pulled the needle out and poked me again. I wanted to be done! He was sweating and feeling so bad! But now I know it’s AS (seeing as my shoulders have lost mobility too.)

The orthopedic surgeon spoke to me, a very obviously non Afrikaans person, in Afrikaans. He didn’t ask me any questions such as, “How long have you had these painful areas? What have you tried? He ignored me when I told him that when I raise my arms, I had started hearing cracking. Instead he told me that his shoulders also get sore sometimes, that everybody’s bones crack, and didn’t even address my heel issue. He hurried me out and I felt like crying.

The only tears I’d have shed today were tears when the office manager -after I told her and the patient that theirs was a practice that cares-said that God puts us where we should be, that if her husband hadn’t needed open heart surgery, they’d have been gone to an overseas country that I won’t name. Instead, she stayed on at the job when the lady she was subbing for wasn’t available anymore, and she helped calm the fears of the lady who’s brand new to sickness

I Need Morphine

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(I have found that the AS patients whose AS is not under control, who aren’t thriving, who end up with double whammy issues – one with AS and cancer, don’t continue blogging. It’s the “I’m so strong, I have run 29 marathons despite having AS” people who keep their blogs up. It’s the ones who don’t have it as hard. It’s the ones who aren’t suffering MUCH, who keep sharing their successes and triumphs and how ‘strong’ they are… It’s very few who keep telling their truth. I’ve only found one young lady on IG who is open. Who shares the better days, and the awful days when she needs a walking frame- despite being on biologics for years, now moved onto infusions as the biologics didn’t really help much.

So, here I am. I hope to continue as long as there’s a reader. And if I join the “my AS is under control” group, I won’t post about it, but more about my other life. The other issues that are chronically mine by virtue of belonging to my dear children-the autism, the ADHD, the vision therapy. I don’t want the sufferers to feel alone. And that’s how I feel. I’m glad others can run up 10 flights of stairs. I can’t even walk up 5 flights of stairs. And I know there are others who can’t either. We will keep each other company. We will be strong despite our bodies weaknesses.

People need to know that AS is not the same for everyone. They need to not look at so and so who’s doing awesome, and expect you to be like them. So, while the sick ones drop off, I will continue. And I hope they aren’t like the ‘celeb’ I’d never heard of who killed himself due to pain. I hope they’re just tired of blogging the same old story. I hope they’re still alive… Even the one who began his terminal cancer and AS blog. I hope you are silently surviving with much support.

Now we begin my original blog post for today.)

Like, seriously… This has been hell. True hell. I recently DREAMT I was at as hospital begging for morphine and I think it’s that bad that if I could, I’d ask for it!

I now know for a fact that NSAID do help me, if they’re at the right dose. I also do know that I’m no longer a “I only get swollen and sore in winter” patient anymore. When I was still on the NSAID, I wondered if perhaps my fingers were ok not because of it, because of Spring.

I have no more doubts. Even my big toe is crying. Yesterday I wanted to type but both hands were swollen and stiff and so painful. I didn’t know it would get worse till my HAND pain woke me in the night. Seriously!? Come on!

Yes, the Exinef 90 made a huge difference.

But…They say that if you go off a biologic, your symptoms can come back with a vengeance. Like, BIG time. And damage can speed up. Could that be it? Can it wreak havoc even though it had not made even half a dent in the pain and stiffness and fatigue? I thought you’d only feel the impact if it had worked. Now, I’m not so sure.

All I know is that hell is back. All I know is that I’m back at the point I was at when I thought I’d give it one last shot at diagnosis. I’m right back feeling the pain that made me beg God to just kill me.

My husband said that he was watching on video as I took the little four on a walk on Monday morning. He said he sat there watching his phone screen and thinking to himself, “What is she doing!?? Where is she going? She is already walking like she’s suffering.”

When we take walks, I don’t realise my state. He always tells me I’m limping. I took a morning walk yesterday as the sun is now rising early. Oh.my.word. He’s right. I stay limping early. And by the time I turned back home, it was a link with horrible pain in my right SI joint. I wondered what others thought as they watched me. It was too visible.

I am not at my best and I have to go quite a distance today to go see a gastroenterologist and ask for a colonoscopy. Let’s hope he’s a good old man. I know he’s old. He’s been at it for 40 years and he looks old. I hope he’s like the obstetrician who delivered the twins. 🙏🏾 Let’s hope it will be worth it. We need all the good doctors we can amass.

The Birth Cycle Continues

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The birth mother I’m in touch with finally admitted that she gave birth last month. Told me only because her eldest asked her if she had told me. I didn’t want to say anything harsh or condemnatory when she already feels the way she does, but you can guess what I thought.

1. I’ve read how some adoptees wonder why THEY were placed yet younger siblings born into the exact same situation are kept. Why weren’t THEY kept too? Why were THEY not worth being kept?

Do I ever want to reveal this fact? Will my child ever even ask? Unlike my friends’ children at even much younger ages, she hasn’t said anything much about being adopted, especially this year. It’s just a fact that she knows but it’s meaningless to her.

On the other hand, my one friend’s child asks to speak to her birth mother on the phone and calls her Aunty B and speaks to her bio aunts. My other friend’s child asked why they can’t adopt her other (older) siblings so they too can eat the kind of food she eats…. And my other friend’s child prays for her birth mother every day, hoping she is happy and is eating enough.

Mine says.. nothing. Even birthdays don’t trigger it. I know it’s part of her “challenges” as she calls her disorders and disabilities. She knows she didn’t come from my tummy and has known someone else gave birth to her, but last year when I asked her what a birthday is-referring to her upcoming one-she said it’s the day when she came out my tummy.

Maybe she will never be curious about other siblings. I especially hope not about the younger one because –

2. This third child has been born exactly into the same situation the other two were born in. The eldest child was raised and mothered by an aunt till Covid came along in 2020. The second child is mine. Both fathers were not fathers though my child’s father is there emotionally, but is not employed and finds food in nefarious ways that have seen him doing some punishments where the courts of law house him – if you get my drift…We even communicated while he was ‘away’ last year.

This third child is in trouble. The birth father didn’t want the little one to be born so he has disappeared. So she’s raising the child alone and has been unemployed since 2022. She’s asked me for old baby clothes already.

3. I wish we could learn from our past mistakes so we don’t repeat them. Stress in the womb, stress outside the womb, no real food. The cycle is continuing and I don’t know what the eldest will learn.

What I do hope is that if the eldest ever gets a man, she will get a real man who will acknowledge that he made a child possible and must therefore help with that possibility if it becomes real, instead of wanting the easy way out. Easy for him and other females who choose it, but not for those who are tormented by guilt thereafter.

She makes beautiful babies. I just wish the relationships they came from were just as beautiful so there’d be peace, not turmoil. When someone tells you they’ve “dug a hole” for themselves and are “trapped,” you know that all the feelings boiling inside you are justified.

She’s looking forward to the child grant from the government. (Social benefits for indigent mothers). A friend said that’s R510 a month. Not enough for even two weeks of diapers. I am sad. Troubled. Disheartened. And worried for both dejected mother and little one. What kind of a life will either of them have?

What did YOU do on Sabbath?

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Well, I decided to take the children to Tygerberg Nature Reserve. The flowers, birds, a turtle…

Our usual crier was remarkably happy! This is someone who once got to a park and immediately screamed and screamed because we didn’t want to stay next to some tree she liked. So she played around it with her dad. Now with dad not being there, we weren’t sure who would be doing what she wanted. Nor did we know what she would want.

Besides wanting to enter the men’s loo when her brother went in, she was FINE!❤️🥰

But her twin! That girl can talk the monkeys off the trees! And she is such a typical Miss Independent. There were times I knew the path was ok so I let her go, there were times she AND her twin wanted to hold my hand when I really would have been ok on my own😉and times she decided she knew better than me and ran, fell into a hole and her bunny flew into the air and onto a bush!

It was good. We had never used that path or trail before so turned back when we felt we’d walked long enough. Next time I’ll go without little ones and see how long it is and if they’d have made it all the way round.

Oh, the other thing of note was Twin A nagging as we walked back that she needed an EYE doctor for her sore finger. One of the bushes she didn’t want to stay away from stings! I tried to mollify her by telling her I’d put cream on it when we got home, she didn’t buy it, she wanted the EYE doctor. I told her I’d give her pain meds. Nope, “eye doctor!” But lo and behold, when we got into the car and I handed her some Vaseline, the placebo worked immediately! She was suddenly and very quickly, “Better!”😉

And yes, as Flydah and my husband predicted-which they always do when they know I’ve had an active day, I paid dearly for it with even more pain later. I read a thread on Reddit where 5000 steps a day was the max some people could do and know they’d be fine the next day, no suffering from the after effects of too much. But man, that doesn’t leave me with much time to do chores etc if I have to do so few steps. I’ll keep hoping that we get to the other side of the surgery, that we find a biologic that will reduce my symptoms and slow down the disease.

My first daughter and I

Oh. One thing I added which nobody commented on was how I kept sleeping when we’d stop at a red light. I’m the driver… I don’t know if AS fatigue is increasing (I’ve read others’ accounts of them falling asleep in a parking lot or dropping their children off at school..), I don’t know if I’d taken way too many pain pills (Some make you drowsy) or if it was lack of sleep catching up on me. But either way, I realised I’m really not well!

But here we are, home safe. Nobody had to hoot to wake me up and the children didn’t even notice. It was a good Sabbath.

I Didn’t Fail

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My husband is overseas and keeps telling me to sleep. I keep telling him I’m in too much pain!!! (It’s 11pm here.) Ahhh. I’m at the stage of pain where if you are chatting to me about nothing linked to me, or about something trivial, I can’t. I just can’t. I need to curl up into a ball and focus on something deep. Something deep about to take my focus away. I can’t do trivial when my body has been on fire all week and the only person who seems to get it is in America.

Pain is lonely.

Pain borne alone is very lonely.

BUT I also have the joy of knowing I don’t fail. While my children were awake, I didn’t let the pain overwhelm me. I didn’t snap at them. I tried to do as much housework as I could so my teens didn’t feel like glorified slaves once they got back from their exams. I did bed time with my talkative twin. I did so much school with my middle two that they asked to stop. I did that with screaming bones.

And so, I know God understands that I’m too distracted to read the Bible right now. It needs depth I cannot give it. And He knows I’m thankful for much. Like my eight year old who knows exactly how to engage with my non-talkative twin. Who sits with her instead of trying to force her to engage with her. Proud of my little girl.

She’d made me put the box on the sleeper couch and just lay next to it for a long time. My girl respected that and worked with it.