Tag: AxSpa

True Love Sees

Grace by any other name2 Comments

True love bears your burdens and is solicitous.

We bear each others’ burdens. My people know I worry about them just as much as they worry about me. We care equally for each other. I immerse myself in their problems and cheer for their victories. I love them deeply.

This angel above is in her 20’s in Malawi. Daughter of a church sister. Maybe two years ago she heard what I wasn’t hearing as I sent her a voice note and walked around my home. “Mom, why do you sound like you’ve been doing too much? You’re not breathing properly! Please stop! You need to rest!” That is love! She broke my heart recently when I asked her how she is, she answered vaguely if I remember correctly and then when I queried it, she said sadly, “Everybody I love is sick.” And that was before we knew my lungs were deteriorating. Her mother has a chronic leukemia that usually patients have to take lifelong chemo tablets for. Her close friend has heart problems. Major ones.

It was the fact that she picked up the breathlessness. And how I stupidly thought maybe it’s from walking too fast around the house.🤦🏾‍♀️

It’s this friend

She told me to stop an exercise by Juice and Toya because during the video as I spoke, I started coughing and became breathless. She told me to obey m the pulmonologist who had told me walking 3 times a week is ENOUGH exercise for me. (He didn’t know I cough and splutter for that workout. I need to try and talk for all my supposedly low impact workouts from now on. I hadn’t thought to try them all while talking to myself. I thought as long as I don’t cough it’s ok. There’s one I dumped because I became way too breathless and tired even without talking. I thought that should be my criteria) She said it out of concern as she watched, not knowing that it’s actually true advice from experts too.

As I said, we all share our problems. Life is not perfect and will never be perfect on this earth. Every day brings challenges we overcome, screaming children we try work with, another day with no job interview, heartbreak over children in their ministry who are neglected… But it seems sometimes, that love is one- sided.

I shared once how my husband was bemused and slightly disapproving that I was doing housework late at night. After all, I had been caring for our family of eight during the day too. And we knew I had AS. Some commented that they too also work till at night.

I reminded them that the context was that AS patients should be resting and not working all day and night. One lady totally got it. The other very healthy, younger, less than three children who sometimes go to relatives so she gets to rest from parenting (If I said how few children she has, people might recognise her so I won’t) told me, “Don’t forget, we also get tired.”

That was when I realised that I bore her burdens, but she had no desire to take in anything I’d said. We AS warriors and others with chronic issues (especially us without treatment yet) wake up already tired! It only gets worse during the day. And now I know too that my lung deteriorating means my the lack of enough oxygen reaching my blood which also causes fatigue. Again, I begin the day tired. I just wanted to be grateful that despite my problems, I’d worked too much more than usual and was happy that the day wasn’t as bad as usual. Why can’t we rejoice for each other? Your A might be better than my A if you’d always been a D student and I’d ever been an A student! It’s not the A, it’s you doing phenomenally for YOU. I celebrate that for my people. And my people celebrate it for me. My true friend above even said that she knows that if I were well, I’d do even more. THAT meant a lot. This stupid disease is holding us back a lot. (As do many other diseases!💔)

I had a bad night. Woke up and emailed my rheumatologist about pain relief-the joint injections and if there’s anything we can do my shoulder and elbow. My chest has been weird and I coughed a lot. We are given sleeping tablets that also allegedly reduce some pain so that we can sleep through the AS pain at night but nope, it’s been no match for the shoulder, elbow and last night, SI joint pain. And so, my posts will reflect that. It’s not all sunshine and roses. Finally gave up trying to sleep at 3am. We wake up tired not only from the disease, but from pain-filled nights. And we gotta keep parenting and working. And that’s ok. Everyone has trials. This is my blog, and my trial.😅

I’m still grateful that my little ones miss the struggle. My very talkative four year old asks to sit on my lap for story time. It HURTS even more. But I do it anyway. (Though I try avoid it happening daily.)

Today, I just wanted to thank those who were worried before I realised I really did have something to worry about. The ones who worry today-not only about me, but about all the challenges each of my children have. Who wonder with me who can solve each problem…Like one child (not the four year olds) with a terribly leaking bladder who doesn’t want to wear a pull up but is causing the bed for lots of washing as the ammonia smell is strong on clothing worn. I need to share that. It felt great to see a post on lack of bladder control by an aunt and to see other aunts agreeing that they too can’t control their bladder for various reasons and felt validated. I want to validate any mother in that situation. Not forgetting my shirt size angel who has outgrown baby diapers and is nowhere close to being potty trained. I see parents in my special needs groups having to buy size small adult diapers for their children, teens. We’re in this together, parent, I appreciate you. This road would be harder without you.

I’ll Thank Him ANYWAY

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Wow, wow, wow. After a terrible night where my elbow (the one that was operated on ) was keeping me up, today took me back to 2011. The pain is low, where my coccyx is. And it has not reduced in intensity no matter which tablets I’ve taken. I just want to CRY. Or kick. Or scream!

This is nonsense! Deep ache going down my leg. It’s like someone is drilling into my back, and I don’t know why it’s so bad! I didn’t overdo anything yesterday. I didn’t sweep anywhere today. I didn’t bend into a trolley like I do sometimes when Mr doesn’t do the grocery shopping with me. I didn’t do much of a workout, only 15 minutes…I didn’t even wash dishes- I stacked the dishwasher. Ok, I guess THAT bending might not have helped. But it shouldn’t be like that! It shouldn’t be like this!!!! Life is not meant to be about levels of pain. It should be pain free completely.

I read something shared by one of the Associations. I can’t recall if it was the British AS one or the other one called something like ‘Autoimmune inflammatory Arthritis society,” that covers all the autoimmune inflammatory arthritis types out there, but anyway, the article said that scientists had found that unlike rheumatoid arthritis where it’s the joint that’s inflamed, for AS, it’s the bone, not the joint. No duh!! We feel it throughout, it’s not only in the joint! I could have told them that for free. But I felt validated too. Because every time I tried to seek help and they’d try tell me it’s muscle not bone, I’d tell them that to ME it feels like my bone. They would try poke my JOINTS in my between my spinal vertebrae even up to my middle back area (as opposed to down in my my SI joints where I said the pain was!) and of course I didn’t feel much there back in 2011-2015!

What do I with all this? The excruciating pain? The fatigue that was so evident that Mr felt sorry for me, telling me at midday that I look “so tired, shame!” What do I do when I feel extremely alone, nauseated from the pain tablets and helpless?

I thank God anyway. He must be doing SOMETHING with all this suffering. It can’t be for nothing. It’s been decades and it’s relentless. He MUST be preparing something stupendous and amazing for me. I know He will wipe the tears away, I know He will be excited to give me a new body. I know He sees my pain and hates that I’m going through it. And I know He loves that I lean on Him anyway. Even though He isn’t healing me.

Even though He isn’t healing me.

God isn’t a fairy godmother like I thought when I was a child and expected Him to work miracles for me. He isn’t magical. He doesn’t just do things for the sake of just doing them. He doesn’t NEED to perform a miracle in order for me to believe in Him, trust Him and love Him like He has to for some doubters. So..Why SHOULD He heal me when I don’t need to be well in order to glorify Him?

I can ‘live’ for God even when I feel like death would be preferable. I can show His character to every radiographer. To every doctor…The GP just had this look of awe on Friday as he heard about my life- he’d wanted to write me a sick note to be off work for the finger, not my bones. Like he was seeing what the friend of an acquaintance saw in me, like I’m an angel. (Not that I FEEL like one.)

God made me to glorify Him in the pain. And I can do THAT perfectly. I can smile at my children, sympathize when they spin and smash into the TV stand, getting a bloody lip. I can praise my teen daughter for giving away a whole box of expensive, fancy biscuits (she’d bought for herself) to a beggar on the street whose board claimed he had no food at home. I can be a present mom precisely because I know God is present for me too.

I’ve been studying the book of Job. I always study the Bible from the start to the end. I don’t do thematic study except for when it comes to Daniel and Revelation where I compare similar themes. This month more than ever, I felt Job. When his friends hurl accusation after accusation, he can confidently tell them he KNOWS God is not punishing Him for something because he has done nothing wrong, and done everything right.

And so do I.

I got sick from infancy. I did nothing wrong. And I aim to do everything right. Unlike some accusations hurled at me over the years, I DO have faith. Faith that God knows best. Unlike some accusations, I know I will not be miraculously healed by seeing some weird guy who claims to fly to Russia in his head! I know my healing will be when God comes. After all, I’ve heard of some AS patients going into remission. But not healed. Why should I think I deserve what they don’t have? I know of too many AS patients who have died due to it. Why should I live? I’m not any better or more worthy than they were.

And that’s ok. I’ll thank Him anyway. I’ll praise Him for the good and the bad. I’ll thank Him for the little milestones. Like how my non-talking twin was terribly afraid of dolls for AGES! And now suddenly has been taking her big sister’s baby girl from her room. I will tell you that I left the shops extremely sore but happy that I found two brown babies for the twins so the one stop stealing her big sister’s baby, and so the other stops crying that she too doesn’t have one in HER hand.

My baby girl isn’t scared of dolls anymore!! I’ll thank Him. Now and forever more.

Another Win

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I need to give the office manager of Dr Greg Paulson a shout out! Since Friday, I’ve had a red eye, and I was paranoid. Just last week the rheumy had asked if I had any eye issues and I hadn’t…Till Friday afternoon!

Google told me that “left untreated,” uveitis could leave me blind. Except, what if it wasn’t uveitis? So I waited. I knew uveitis would feel awful quickly, but I also have a high pain threshold, so I wasn’t sure if I was just tolerating the extreme pain better.

Sunday, I tried to find emergency opthalmologists on our med aid network but there aren’t any. I debated going to Trauma, but when I’ve taken my twins for eye issues, they’ve just used a normal torch and I knew you need to test pressure too. So I didn’t go.

This morning, I started looking for available opthalmologist. Wouldn’t you know it, like too many specialists, the ones I got through to were only available in June. I’d be blind by THEN! And this is where Dr G Paulson’s right hand lady comes in. She phoned me back with MANY other options and told me to go to Trauma at our closest hospital and who her opthalmologist that’s there, would check on me. She gave me alternate numbers… She was amazing!

One of her suggestions was a Dr Mouton. I was told that he was fully booked, but that she would take my details down. “You have anky what?” Needless to say, when the opthalmologist heard, he wanted to see me asap.

And so I went!

He is a breath of fresh air too! So personable and kind. I told him how guilty I felt taking up time without an appointment. He reassured me that it was urgent and that it wouldn’t take too long. Thankfully, two patients decided not to pitch so we both rejoiced! Now I didn’t need to feel bad for making some poor people wait and wait and wonder why they were waiting so long!

Scleritis. Similar to uveitis in terms of possible blindness but not as extreme with regards to pain and where the inflammation occurs. And like uveitis many of us autoimmune disease people get it. I must continue with my anti inflammatory tablets from the rheumy, and do seven days of steroid eye drops. And take it from there! We had a discussion-started by him-on wonderful African kings and leaders. And he had quite a few patients of colour. He is a gem. I highly recommend him.

And from now on if I have a long wait, though I will definitely be in pain, and would appreciate it if they phoned to alert us about being behind like my children’s paediatrician does, I’ll tell myself the delay is because some very desperate soul had an emergency and had to be fitted in.

My eyes (and bath) are sore, tired and I have a headache. My typos will therefore be even more evident in this post as I won’t be editing it.

I’m scared. I have a swollen wrist and arm about 6cm higher up my wrist. My neck hurt when I reached up to being washing down, gave an audible crack. It’s not turning properly when I’m reversing out the garage. It’s as if my AS is speeding up and spreading more. I don’t like it. Though I began and spent many years on a vegan anti inflammatory diet and the AS didn’t exactly hide like it does for some (before I realised it was triggering IBS flare ups) I might try it again. But I will need some protein that isn’t legumes. What to do. I know where God stands. And I’ll be honest, I tried it. I can’t. I tried anti inflammatory diet with white meat protein and it’s too gross now. I’ve spent too many years not eating anything that moved that the texture, the concept… I don’t know. I need protein. And I can’t have legumes. Husband agreed that someone in my situation needed fish or chicken-free range-but I can’t. I tried and threw it out. The smell, texture and taste are gross for me. I even tried free range eggs and I couldn’t handle those either! 20 years of none of that had changed my tastebuds and tastes. But I’m struggling. I really am. I need to try halt this speeding train. Maybe this time it will help. Or, it will at least reduce the burden, reduce the amount of pain I’m in. I will see.

(I’m on a plant based diet because that’s what Adam and Eve were on and God wants me cholesterol-free and as healthy as possible. Except now I am not sure the wants me to do it and die faster.)