I was going to post about the latest infection. Never had it before. Doctor said his patients weep when seeing him. Joys of chronic and high intensity pain, we have taught ourselves to grin and bear it. But I hadn’t type well. So I did a video
Not my will but Thine
Oh my word! People can be so interesting. I’ve been told I have AS because I have trauma I am refusing to go resolve…I don’t have faith…And today’s one was “Because I’m not doing hot and cold therapy and using charcoal” in a nutshell.
This person kept digging and digging at me. Telling me that I got sick because I don’t “follow health reform” and that if one “follows health reform,” they won’t need surgery. Umm, tell that to my strange abdominal muscles that feel like “soft tissue.” Or to my urethra that narrowed itself so bad that it was basically strangled. Or the polyps and fibroids that keep popping up. Or the little baby that born with three urethras whose kidneys are in trouble.
Yep, all our fault because we don’t use charcoal🙄 Or maybe he has fetal trauma he hasn’t addressed?
One thing I’ve got a major problem with, is others wanting me to heal without asking God if that’s His will. What if by being ill and in pain, I’m avoiding some activity that would eventually lead to pride? I’ve seen it in runners, sharing their stats instead of just posting that they ran, wanting to take part in marathons to show others (And I mean specific people I know. Not judging others for their motives for running the Comrades.) what their bodies are capable of. Even planning and running specific times (as per schedule they have ) on the Sabbath because they’re preparing for the Comrades. And as a Christian I ask, “But what will this do? Will this help you? Will this inspire anyone to be holy, better, kinder? Why sacrifice your soul by focusing on the Sabbathbon some far away race when right now the devil is fighting?”
What if I’d be like that if I could run? Health doesn’t need intense activity. It needs commitment and moderation. They will be just as healthy doing shorter runs and being more useful to their families. But maybe I’d be like them if I could run. Who knows? Or maybe I’d be out the house shopping for hours on end and neglecting my children. I don’t know the ‘worse’ that is waiting for me out there.
And so, for the saving of my soul, or to prevent me from thinking I’ve made it spiritually, the thorn is allowed. What if it’s to keep me from other harm I can’t see with my non God eyes?
Why blame me for NOT being well?
For indeed, this morning was all about blaming me. By someone who suggested charcoal??? Seriously? At least know what the disease is before telling me what to use to ‘fix’ it.
Not Chronically Mine
Woohoo! On Monday I went to the Endodontist and this time I left- for good! (Unless I need her services again one day.)
But she’s a specialist I don’t need right now! The hole in my jaw is GONE!
No more check ups, no more long drives, one less problem! No more dental x-rays.
I’m free!!
(After I go get a crown replaced, don’t ask, I’ll be doing injection number 8 but only number 2 post- op. Can’t believe I’ve lost two months. That’s a lot of money on a failed experiment🥹And now I share the financial loss with Mama Abby aka Flydah, who sent some money towards treatment. Let’s pray HARD that I can go for 2-3 months with NO breaks needed. Time is of the essence. The pain isn’t going and my mobility is getting worse.)
White People are Vile
Quoting something someone posted on X.
No offense, but to me, that’s just as vile as the person who promoted her to type that is. It was in response to some teen (who should know better) calling a young Black man, the K word.
What followed was a lot of “See? I told you White people are evil! See, they’ll never change.” And the above line. Going ahead generalizing a whole group of people because of one idiot who hasn’t yet emigrated. Please, do us a favour, if you hate us, leave our continent! I’ve asked this before. 😝
And while we are calling White people “vile,” let’s not forget ourselves too. I hope when the next taxi protest starts and buses are petrol bombed, innocent people attacked, she will say, “Black people vile.” Keep the same generalising energy, sis. Or change it completely.
I’ve walked past quite a few Black staff members in shops. Not wanting to work hard, not wanting to leave even ten minutes after the shop closes to count stock etc. Not wanting to be helpful to a customer who can’t find something… Should I then say “Black people are lazy?”
South Africa is a mess. Our economy is going down the drain. We should be focusing our ire on the criminals scaring tourists away and scaring overseas investors. We should be protesting and demanding that the government to build proper toilets in all schools so that no more children die in pit latrines. But other than lambasting White people, these people aren’t into reality, but into celeb watching. That celebrity won’t save or economy. Won’t raise the number of available jobs.
I love my country. I love all people. Criminals, racists, petrol bombers..are vile.
As a Christian, I’ll repeat a portion of scripture I referred to when racists were vile to me.
For I am fearfully and wonderfully made. Great and marvelous are they world, and that my soul knoweth right well. Ps 139:14
White people who uplift others, who care, who share, who don’t paint everyone with a brush that only a select few deserve…They are wonderfully made. Just as much as Black kind-hearted people are.
Remember the Black Sash and the Whites who fought against apartheid… It wasn’t only Mandela and Zuma who were fighting. People of all races did. Read their books. See how even their three year old children were targeted. I wish that unity would prevail and fill our whole land with peace-lovers.
I guess we will have to wait for heaven for that. If you’re a Bible reader, you know things are only going to get worse.🥹
A Better Start
The Psalms tell us to tell of God’s goodness. I don’t know if He had a hand in it, or if the flare is over, but today I had a MUCH better start to my day, and I’m HAPPY.
I usually wake up stiff, fatigued, bone tired fatigued, exhausted, very stiff (Yes, I know!) and in excruciating pain. Pain so bad I can’t move until I have pain tablets. Well, I move. But I can’t be active fully and my normal self till after the second dose of pain tablets -about six tablets spaced out over two hours. By the way, I’ve found that my shoulders are stressed or tense. They’re raised up. I have to keep telling my shoulders to relax. Is that stress or is that part of the disease? I keep getting scared I’ll fuse with my shoulders up. It’s kind of a weird feeling that I can’t really explain. Maybe it’s from ‘holding’ myself upright and keeping myself going while in pain? That tension??
Anyway, back to topic. I woke up and was able to do my Bible study. I was able to clean three large mirrors. I dusted a shelf. Then re-dusted it later when I realised the difference it makes when I clean with my glasses ON🤣and was able to sort out two loads of laundry. That’s laundry for EIGHT people! And I did all that before 6am!!
I finally needed the pain meds at 6:30am when wow, I had to go lie down quickly. Which is where I’m blogging from. But man, this was a reprieve! I got to be useful way earlier and without having to handle extreme pain and exhaustion.
It was a good 45 minutes. I hope one day to have days and months where I don’t need pain tablets to survive. Where I don’t work a bit then collapse and feel achy and broken and like my joints are grating on each other as has happened now, wondering how I’ll survive the rest of the day.
Keeping hope alive. And if God gave me those 45 minutes nice and early for a change…Thank You🙏🏾
See What I Mean? ☺️
We went from random unusual sounds and NO speech at all, to words and not only single words, sometimes whole phrases and sentences! Today she came to me and proudly pointed at her ears while shouting, “Ee-yors.” I responded, “Yes! Ears!” Who cares about pronunciation right now when words are so new!?
Caught her running to my room…
And after she entered, I was rewarded with more!
And “Let’s go!” Not sure where to! Her first time saying that.
What is so exciting to me is how she herself seems to find her ability to speak amusing and amazing! She just says random words too with joy and abandon! It’s like the words ‘taste good’ to her. It’s lovely. It really is.
But it’s a privilege I can’t post elsewhere. I have an acquaintance who has my number and their autistic six year old is not talking (yet.) My girl is four years old. They’ve been everywhere for help and he has been going to special schools (Due to aging out , he’s actually leaving the one we wanted but has no space for her.)
I know how it hurts -for a lack of a better word- when someone you were walking with suddenly runs ahead and leaves you behind leaving you even more isolated, even when you know they have ‘severely autistic’ (Neurologist’s words, not mine) challenges to deal with, like behaviour that’s inexplicable or the insatiable desire to keep eating. I can’t do that to her, I can’t throw our growth in her face when she’s wishing for it for her child. So, I share my surprise here. I pray it continues. I hope it progresses till she can tell us what’s in her heart, her mind, what bothers her, and what she likes. When we go out, to have her tell us WHY she’s screaming would be such a blessing. To know what makes her uncomfortable would help us reduce the discomfort, protect her from the places or smells or sights, and create more safe spaces for her. Oh, that would be such a lovely thing to happen.
Her twin-she will scream and cry. But then she will tell us that she doesn’t want a certain song to start playing until she’s there in front of the TV instead of with me in the bedroom. We now know to have her sister call her if they’re about to play music so she’s there. We know why she’s crying.
What a dream come true if the same could happen for her sister.
Keeping hope alive and VERY grateful for where we are today.
Alright no. I couldn’t keep it in. So I hid the mom instead. I post a bit about AS (Mostly what it does to others. Only two people know I’m dealing if with digestive side effects from Enbrel .) It’s only fair to post a bit of my good news.
Pain and Providence
I’m always at a 7/10 on the pain scale. But when flare ups hit, I’m in trouble. That’s when the pain flares up.🤣Just in case there’s any reader out there like me. I used to think it meant that the disease the person was referring to comes to life. But in some cases, it means it becomes a horrible monster as opposed to a raging beast.
That’s where I am. Have been since I think Wednesday when my husband said I’m walking like I need a wheelchair. The pain tablets..no combination of them has brought any relief at all. Nothing. I feel NOTHING. No reduction in pain at all. Just my bones screaming. My bones are behaving badly when I do my exercises too. It’s as if there’s a sudden fast decline this week. Better stop now. I still want to drive etc!
As for injection side effects? 24 hours of heartburn , feeling full after eating only a few bites, nausea… At least if I had side effects AND pain reduction, I’d feel better mentally.
Nothing. I’m lying on my back. This used to help reduce the pain. No can do. I can’t focus on reading my Bible.
Flare ups stink.
Mr Arthritis follower, how are YOU doing today? I hope you’re resting from suffering!
This is not a good Sabbath. Let’s hope next one will be better. And if you’re where I am-let’s keep holding on just a little while longer. Maybe the next treatment attempt will bring relief.🙏🏾
But, I almost forgot the gifts Providence has provided me.
I asked my son to take photos for a vlog I want to post on where I am with this disease. My sweet angel insisted that she stop her lunch and “do what Mommy is doing!”
She even took time to reassure her sister who had been overseeing her eating, “Don’t worry! I’ll be back! I just want to copy Mommy.”🤣
My youngest blessing, her twin sister… I don’t know. I don’t know if it’s the classical music that research shows has made improvements in the brains of neurodiverse children; I don’t know if it’s the supplements research has shown help (in much higher doses than we can afford. But I figure less is better than none.) I don’t know if it’s because of specific efforts to engage in speech and for her to watch the videos I make; or if it’s natural progress. But my last born has been talking up a storm.
Well, a storm compared to her “non- speaking” days! And within a few days she’s even modified her speech to be more ‘correct.’ From pulling our hands and asking for “some grapes,” she changed it to “want grapes.” If she doesn’t see what she is looking for, she names it. Remember the frustration for me as Mom when I didn’t know what she wanted? And her reaction to the word “No” is so much better. The whole world no longer knows when she’s upset with us.😊
There’s a lot we don’t yet understand about her behaviour. She only had maybe five things she can ask for-for now!! A lot that perplexes and frustrates. I’m still sad that I can’t do her hair and she can’t even handle it being washed-resulting in some funky smells and a need to shave it off. But we all rejoice in the speech that’s coming despite us putting pressure on her. It’s a huge blessing.
Ye Are My Disciples
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.
Perfect
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. 😉
We Need People
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.
They said I should write a book 