Author: Grace by any other name

God-lover

I Sense Trouble

Grace by any other name1 Comment

Firstly, finger is still an Enbrel no-go. My rheumatologist scheduled an emergency appointment yesterday and did an ultrasound on my finger and the infection is still there. (I knew that anyway because I still am in pain and it’s WHY she asked to see me.) She gave me a script for antibiotics and for another full dose in case the infection gets worse or recurs. She’s hoping I’ll be able to inject next Wednesday.

Trouble…I noticed that my sinuses were acting up maybe two days ago. Throat got croaky when talking, had to clear it, and had to swallow drainage yesterday. Today I wake up and I’m wheezing or crackling when I breathe. And there’s definite drainage.

I have more of the super sinus antibiotic I was given when the last infection took to long to clear and my lungs got impacted. And an appointment with my pulmonologist set for January 24. Let’s hope I don’t need to find another one before then. 🙏🏾

All in all, I’m not happy. I sense trouble and I’m already in trouble as it is! Last thing I need is to get sick! I’m now REALLY paranoid of strange places. My children have been so much healthier with our fewer church visits. But I’m still going to doctors, going for blood tests, standing in pharmacy queues with coughing babies and parents…And I don’t WANT Yet Another Reason to delay treatment.

This was truly just s as health update. I have no pearls of wisdom. No, “But THIS thing is going well, it’s not ALL bad…” Because yes, even though the other thing might be going well. THIS is not. And THIS (my trials) is what the blog is about.

I’m now using laser light therapy and salt soaks and keeping my hand elevated as much as possible. I will work on my sinuses too and hope I catch it before it gets worse…Maybe I DO have chronic sinusitis as the pulmonologist feared. Who knows?

Definitely not me.🤷🏽‍♀️

ETA: I thought I’d try more natural remedies but it’s been too many days now. I’ll fill the script. I’d hesitated and hadn’t done so yesterday.

Now Injection This Week

Grace by any other nameLeave a comment

I still haven’t recovered from the infection to the point where the rheumatologist thinks it would be safe to unleash an immunosuppressant on me. “No redness and no swelling.”

Instead, I have white. The hole is no longer producing the stuff you’d assume would cause the current whiteness. Pus. I hate the word. Sorry for grossing you out! The joke itself has not closed up.

And I definitely do not have “no swelling.”

In fact, pain has increased.

Normal finger

Not so normal finger.

I really woke up hoping for the best today. Hoping to inject. Looking FORWARD to the stomach pain and bloating.

I always understood intellectually the cancer survivors who’d write how distressed they were that their white blood cells weren’t a high enough number for more chemo. A count reduced by the very chemo! Thats where I am. Enbrel has probably suppressed my ability to fight. But I desperately want it so we can know the way forward sooner rather than later.

I’m disappointed. Sad. Tired. I want to be pain free. I don’t want to get up from sitting on the toilet, or stand up straight from bending over the bin and scream from pain from those movements as what happened today. (Hopefully that’s the last time!)

I just want a bit of hope. Please 🙏🏾

What if it’s Family?

Grace by any other name2 Comments

I will set my face against anyone who turns to mediums and spiritists to prostitute themselves by following them, and I will cut them off from their people. Consecrate yourselves and be holy,because I am the Lord your God. Lev 20:6,7

I wish I was an island. Or let me re-start, family is sometimes more trouble than safe space or safe place. I wish I could hide…

I have been and always will be a Christian. I will die with God, even if He takes me way too early (Ie. When my children aren’t able to survive without me.) I have read the Bible, I believe that was prophesied happened (The Roman Church and the Protestant martyrs) and more is yet to come. I believe the prophecies of Isaiah were fulfilled in Jesus. And I believe the saints who go to heaven when He returns are those who keep the commandments of God (Rev 14:12), not those who disobey them. And His commandments are broader than just the literal wording on the two tablets of stone.

I believe, will not doubt and have no interest in debating.

Unfortunately, others don’t seem to get that. How often I’ve sent messages sent by relatives to my dear friend. Messages I did nothing to provoke. I blog about my Christianity. I post about it on my status where these relatives are ABSENT, and have never spoken a word to them about my beliefs because I know how far from God their own take them.

Sadly, my silence seems to mean that I’m open. And because they are older and we are African, it is extremely difficult to tell them to leave me alone just as I have left THEM alone. Or to tell them to stop wasting their time and my space sending me articles on why the Bible isn’t real, telling me to meditate to spiritualistic music that taps into Satan. (Basically.)

Yesterday was one of the dumb ones. Sometimes, I don’t bother reading or listening, but I had been hoping that things had changed, that the aim of communication was NOT to remove my hold from God. I was wrong. And funnily enough, single thing that was meant to change my beliefs only cemented them further!

I don’t want to offend those who believe that the dead communicate with them, so if you do, now is the time to stop reading. Maybe tomorrow I’ll give you a health update.

But wow, it was the dumbest video I’ve ever seen. The speaker was saying we will know who we are by asking some long ago dead people who THEY were. I am bigger than my people’s past. I have choice, I have will, I create my own present and future and I do so with the One Who created those dead guys.

Bloodlines also matter regarding who to marry. Well, the blood of Christ is what matters to me. I don’t care what bloodline someone has if they are evil, immature, rude, aggressive or abusive. I want cultured, kind, and someone in pursuit of holiness. And…I’m already married! So that’s a bit late now anyway!

My choice of career or pastime is to come from what some dead guy liked doing. So, if he was a hunter…? Am I meant to go kill animals now? What about my having agency over who I become? What about freedom to follow my own dreams?

I’ve simplified the points massively. But at the end of it all is this. I will not make the mistake of hoping people have changed their beliefs, no more hoping for the best. I know now that others are heavily steeped in their ancestor worship. I worship God Himself. And I will stick to reading the Bible. I will stick to learning Who HE was, what He liked doing, and emulating HIM, the only One Who knew me before I existed, before those dead guys existed, and loved me anyway.

Let no one be found among you who sacrifices their son or daughter in the fire, who practices divination or sorcery, interprets omens, engages in witchcraft, or casts spells, or who is a medium or spiritist or who consults the dead. Anyone who does these things is detestable to the Lord; because of these same detestable practices the Lordyour God will drive out those nations before you. You must be blameless before the Lord your God.

Deut 18:10-14

Digging into the lives of dead people to get guidance for my life is the same as the two scriptures I’ve posted. And that same Bible tells me to stay away from those who work works He does not want. So what do you do if it’s family? Block WhatsApp? Thats how all these beliefs are shared with me. I guess I’ll just not read. And delete as soon as they arrive. I know in Whom I have believed. And He is enough.

So…

Grace by any other nameLeave a comment

Antibiotics finished.

Infection still around.

Definitely no injection tomorrow as was meant to happen.

Slightly desperate times. But at least my whole hand is not sore anymore and though worse than the day I went to the GP, slightly better.

Maybe Friday?

Please this week…

The pharmacy guys phoned to ask if they should order my last bkx of Enbrel (the script is for three months at a time.) I still have four injections in my fridge and surgeon and anesthetist’s bills to pay, so..no.

I’ll wait.

Hope.

Watch

Pray.

And beg for a chance to wage war against this disease.

Not my will but Thine

Grace by any other nameLeave a comment

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

Grace by any other name1 Comment

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

Grace by any other nameLeave a comment

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

Grace by any other name1 Comment

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? ☺️

Grace by any other name2 Comments

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.