Tag: Ankylosing spondylitis

Perfectly Ok

Grace by any other name1 Comment

I always feared trying to educate small ones of differing grades. That was before I knew the extra educational needs and learning disabilities that would befall us.

What is perfect in the day of a sick mother of disabled children?

Whatever it is, it is impossible to attain. So, I will live with “perfectly ok.” Today, was perfectly ok. I limped to go collect our hope in two bottles and went to the bank and then wanted to crawl home and stay in bed.

But it was perfectly ok that I couldn’t. It’s perfectly ok that I feel tired. It’s not only the AS fatigue, it’s also the good kind of tired from USING my body, not only from constant pain and fighting inflammation. I like that kind of tired, even as it contends with my body’s innate fatigue that I wake up with and fight against daily.

It was good be busy. I love being busy. I love doing. And so, when I finally lay down so I could plan the next Bible story segment and learn the memory verse so I could make up a song for the children, it was perfectly ok that that didn’t happen.

Instead, just as I dragged my laptop across the bed and put my feet on my hot water bottle, my littles came in, my four year old leading them. “Can we come lie down in bed with you?”

Well, there went the silence and rest I’d been hoping for! Instead, I got some cuddle time, some Bible video time in bed and random conversation with my littles. It’s a fair trade, right? After all, the most important thing is to help them develop holistically, and that definitely includes emotionally, doesn’t it.

I didn’t do ANY of the school work I’d planned. I’d planned it before I knew I’d need an hour and a half to go collect my daughter’s new med, the Strattera. My hope in a bottle. Last week, during our crazy hospital stay, I told the psychiatrist how my non very talkative angel can’t focus. I try show her pictures, she isn’t interested. We tried sign, she didn’t look long enough to learn the correct sign for the word meant. We speak, she doesn’t copy. We try the iPad, she only wants one specific app- Starfall- and only one specific session. AND she is all over the place anyway, bouncy and busy. Never sitting still.

The psychiatrist asked if we’d tried any ADHD meds. I told her that (based on the extremely judgmental pharmacist who castigated me once when collecting my son’s Ritalin) I’d thought I have to wait till she is six years old for an ADHD assessment, and even with age six, the pharmacist was angry at me and all the professionals who agreed that my boy who was six years old at the time (and our other girl) has ADHD. I wish he could live my life. I wish he could try learn with multiple thoughts buzzing in his head. I wish he could try memorise simple things with other things intruding and stopping him. Seriously, I asked my nine year old what one plus one is and she said two. I congratulated her and she said she’d been guessing.

After all these years, not much stays in the memory despite different learning methods and just rote learning, even with medication. Imagine without!

So, psychiatrist said Strattera should take 6-8 weeks to start working – if it does. It’s generally also sued for ADHD but nobody has ever suggested it to us. The psychiatrist hopes that then her head will be calmer and able to take in more, to learn. My nine year old asked if it would make her talk.

That requires prayer and at this point, a miracle. I told her that what I want is for our girl to learn to communicate, whichever format that may be in. We will learn with her. We just want her to be able to learn.

And so, we have two (out of three- the pharmacy only had two and our usual one close by had zero) bottles of hope. Our hope in a bottle. We need a huge dose for all of us! Today, it’s about my non l-talking angel who moved our hands to get what she wants except for the words, “Cereal, juice, peanuts and raisins, ice lolly..” She certainly has her priorities sorted.😉

If we look at our problems individually, we will faint. Sleepless nights of pain, my right hip seems to be fusing. It’s not behaving at all and it’s scaring me. My limping has increased even according to my trusty Apple Watch. To know I have such precious and so young (intellectually forever young and struggling) is daunting. I can’t do it NOW, how in the world will I do it next year?

And so, today I focus on our hope in a bottle. And I focus- for this blog post because sadly, life isn’t like that, I can’t compartmentalism all the things and problems – on the times she is happy. My daughter’s anesthetist asked why I was limping. I explained that I have AS. His response, “Please tell me Amarissa also doesn’t have it.” Then he did an impromptu check that I still have neck mobility after telling me that AS is an anesthetist’s nightmare. Yeah, I can’t forget the people who can no longer have surgery under general anesthesia because they can’t ve ventilated due to the curve they are stuck with. I also can’t forget the man who thought he was fine and when they inserted the breathing tube, it turned out bone had grown INWARDS into his throat. The bone broke off and unbeknownst to the theatre staff, he choked on the bone as it occluded his airway.

AS is a beast. AS with special little ones is hectic. I changed our angel’s diaper and wanted to cry. How will I do this next year? And the year after? Will she be able to comprehend if I tell her to kneel so I can wipe from that position rather than on her back? She doesn’t comprehend much now… Or, doesn’t react as one who does. “Give to Ella” means nothing. How will this work? And the siblings who also need lots of work? How will we do this?

I don’t know how. But we will. We have no choice. Somehow, we will keep going, even when we don’t feel perfectly ok at all.

And though we didn’t do any of the book work I’d planned, we did lots of physical and occupational therapy home exercises. We were happy. We laughed, we cried. I did laundry….We did stuff. And didn’t I say I like doing? What we managed, was perfectly ok.

Also, I got validation. I researched lots and read books by qualified doctors and researchers. I buy the supplements…The psychiatrist if we’ve tried magnesium, yes. Zinc, yes. All of them, we are doing. Not only for our non speaker, but for our ADHD girl with learning disorders who landed us in hospital last week. Basically, I’m doing everything that I can. The impossible is not in my hands. I need to learn to be perfectly ok with that.

She suggested we take our girl for an educational psych assessment. We’ve done two already in her life. I sent the report and our vision therapy report. Again, validation. I just wish I could ram into my thick skull the knowledge that I am not failing my children. It’s hard to believe you’re doing perfectly ok when the majority of your six are struggling so much. But we must.

Give ourselves the grace we would extend to others. Start with yourself first.

Twenty Percent

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I don’t know how soon, but soon, I’ll be getting my biologic! I have sent my prescription to the pharmacy via the app, and have applied for help with funding through an organization my rheumatologist’s office told me about.

I had actually seen the name in the Facebook group I left, but I figured that because my second rheumy didn’t tell me, it meant it wasn’t relevant to me! And so, I had to pay full price. This current rheumy’s nurse asked if I’d received help from the organization. Nope! So this time, I’ve filled in a form to apply for help. Now I wait.

I’m also a bit .. I don’t know. There are people who don’t get nuances well and they’ve discouraged me from being candid and open. Not their fault, but their reactions usually don’t match my reality. They’ll rejoice big time that I was approved. Meanwhile approval is just a step in a process of finding out if the biologic will make a difference. If is a very big word.

And if it does, it will only start making that difference around the 16 week mark. Four whole months of getting worse before hopefully stalling the process, or, slowing it down. And that was made extremely clear in a way it hadn’t been before. I have active Ankylosing spondylitis. I am not in remission. I’m not like some patients who are. My disease is moving, damaging, stealing my mobility, causing more pain. And the information sheet for the biologic I’m moving to, Cosentyx, states that after 16 weeks, 68% of patients on Cosentyx got at least a 20% reduction of pain levels and better mobility (ability to move.)

A mere twenty percent.

I hope I am not part of the missing 32% and I also hope I get much more than just 20% pain reduction. That would not be enough. I am struggling more and more each day. That reduction would take me to 2022 levels.

In 2022 I was begging to die. Didn’t know it could reach the levels I’m on. And I know now that it can get worse. I think of my Christian brother-in-law who had so much cancer pain that he was screaming if the sheet was creased. There’s fatigue and pain like this that stops me exercising, walking, driving, teaching. I try, but for the last two weeks, I’ve had little strength when moving for exercise! There’s pain. But there can also be pain that sees me uttering things I wouldn’t utter normally.

I have lost my optimism. I used to not want to just mask the pain by using pain killers as doctors suggested when we were trying to get this diagnosed. But now, three different pain meds give me no full relief. It doesn’t even become a dull ache that I can forget unless I start walking or when it’s night time and I’ve fallen asleep for a few hours. It’s always there. We’re at ‘pain killers don’t mask this at all!’ Instead of being woken by pain, pain is keeping me up. So much for trying to avoid pain meds! Now, you can’t give me too much!

You know, to not have anyone to talk through all this with is lonely. And so, I type. Maybe someone out there, no, I know someone out there is interested in my health and my limitations and joys. I shall type because I can’t speak. My children don’t get it, my husband doesn’t ask if the rheumatologist has written yet so he doesn’t know about the funding nor the Cosentyx prescription. Well, I haven’t told him about the latter because because I read that email at 11pm and he was fast asleep. Telling someone who isn’t invested isn’t the same as telling someone waiting along with you.

I am thankful for the small sisterhood that watches time speeding by and is sad that it goes by with no relief and only increasing suffering. I am sad for those like my migraine sister who are still waiting with no direction given. No lath set out yet.

Side note- I can’t find a pediatric OT even at least 20 minutes one way, away! What am I to do??? I guess I will have to muddle along. It’s better than not trying anything at all, right? I continue mingling OT resources with our normal school day.

My plate is heavy. It doesn’t even feel like a plate, it feels like multiple boulders being pushed down onto me.

I am weary.

I wish I was lying in that coffin instead of my father. But while I live, I’ll continue being the best mom I can be.

You know what? My talkative twin was singing in the bath today. I joined in. And her twin sister spoke-sang (chanted in time) along with us!! And before that, she had growled! She growled the exact phrase I’d said. A three word phrase!! First time immediacy echoing three words. She’d wanted to watch something on the iPad but my son wanted to make her watch a video I had put on. Hey, he wanted to stick to the rules. So I told him, “Ag, let her watch it!”

And in the bowels of the bedroom, behind the door, we heard, “Her watch it!” It was like a demon talking. I’ve heard demons talking (at church). It was hysterical. And cute. It made up for her pushing me out her room when I went to go sit with her. I always feel like I’m not doing enough. A friend sent some true story video where the mother basically isolated a little autistic boy, said words, repetitively, and then suddenly, he spoke. But that’s not what happens with all autistics. And so, I need to stop putting pressure on myself. He never wanted them out his space. He didnt react to them being with him, watching him, copying him.

She does. She reacts. And she don’t want me! Not at that moment. But there are other moments. Like later in the afternoon when I cut her nails and she opted to sit on my lap, and even before that when she’d asked for a kiss. She pulled me down, looked me in the eye and turned her head up a bit. It’s not like she puckers her lips. But we all know what that little upturned face means.

We will follow her lead. And I will let go of guilt. Comparison really is the thief of joy. And so, I’m grateful that nobody is sending me ‘success’ stories anymore. I am fine with her being fine the way she is. Besides communication, I want her to be content.

No News!?

Grace by any other name3 Comments

Seriously?? April, in April we applied for a change in medication. It’s now June. Last week I got a reply from Diacovery saying they’d partially pay till October. And I wrote to the rheumy’s office and also asked a question. I asked if we shouldn’t move my appointment further out given we won’t have had four months on the new med by the time I see the rheumy. Said appointment being to see how or IF it’s working.

There’s been dead silence. Every hour of silence feels like a day. And I don’t want to ask again because you know how that goes- you get rapped on the knuckles for having the audacity to ask what the next step is regarding your declining health.

This is apparently a common problem. I’ve seen folk in the States talking about how when they email about a flare, they get seen -regarding the flare-SIX MONTHS after the flare began. Or they just don’t get the level of communication they deserve. It’s not like I’m not willing to pay for an email response. But there’s nothing…Just silence. But hey, I’ll have to pay immediately for my consultation! And it’s a lot of money. A lot.

This really stinks.

So let’s end on a sweet note. My talkative four year old loves life and is very active and energetic and crazy and sweet. I was about to add something sad about an autistic trait but I won’t. Let me see… She loves wearing a pillowcase on her head and being Pharaoh.

There.

I’m Stopping

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I’m dropping the Enbrel. It really IS too much of an immunosuppressant for me. I’ve been very careful about catching viruses. Been resting my mask and going to shops when it’s not full. But what about bacteria?

It seems the paronychia is back.

I’d never been convinced it was fully healed anyway. My rheumy had seen fluid still inside my finger -even though I felt no pain-when she performed an ultrasound on it when I showed her it was still puffy.

The GP agreed it looked infected but the hand surgeon told me it was ok. It was just going to remain like that but was ok.

Well, the same finger is painful, had the small peeled off area and is more swollen than before. I’ll treat it conservatively today-hand elevated, salt soaks, topical antibiotic cream, and hope for the best. Last time it took three round of antibiotics to look kinda ok (though still worrying to me and the GP!)

This photo is today. Not too bad yet. The pain level is at the level at which I ignored it last time then couldn’t sleep that night and it had become awful by the next day. I hope it goes down instead of ‘up.’ My husband saw the picture and texted, “No more Enbrel.”

I’ll also contact the rheumy and ask what the plan is regarding treatment and tell them I’m officially quitting my Enbrel despite the three syringes left in my fridge. Or ask for recommendations for people who treat paronychias. But I’ll do that IF this doesn’t get sorted or if one round of antibiotics doesn’t get sorted. I’m holding out for Monday morning when I can see the GP who treated the first attack that wouldn’t disappear.

Sigh!

Wins

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Since Thursday, I’ve been consistently limping, walking off because of the stiffness in my pelvic bones. I was even stumbling because I struggled to always lift my feet high enough off the ground.

This video was yesterday, Saturday morning. I had never watched myself before. My husband did once complain that while he had a break on a work trip and the teens were at exams, he had a peak at our security cameras and he didn’t know where I was going, about to take a walk with the small four while clearly limping.

Since Thursday, I’ve slowed down. Pain extreme. Exhaustion bad. I didn’t even reach 9000 steps on Thursday yet my usual average is between 12000-14000. Yesterday was worse. Despite all the pain meds, I didn’t even get a minute during which I could say, “I’m pain free.” It was hell. The pain was consistently an 8 out of 10. You couldn’t ignore it.

Today, for three and a half hours, I had almost no pain. I could fully ignore it and only felt it if an inflamed area got bumped!! It was lovely! I was so scared that yesterday heralded days or weeks of no relief whatsoever.

That’s a win for me! I know the nights are bad, and the mornings too. But I’m hoping my day tomorrow will be like today, at the very least.

Second win.

I haven’t heard her calling me mommy in a year. She stopped even saying, “ Dinosaur” for her dad. But she is still saying words, naming the foods and beverages she wants! That’s so different. All other times, her words would disappear for months.

Also, if you listen carefully, she whispered, “Doll” twice! It’s not the first time she completed or added to something I’ve said. As she watched me pouring cereal into a bowl for her, I said to her, “I put it in!” And she added, “ Into the bowl!”

Other things have stayed the same but a bit better too! I noticed that a “blister” she’d had on her right hand was now looking more like an infection so I asked her dad to take her to the doctor yesterday. Honestly, even if I didn’t have AS, I wouldn’t want to take her. She experiences so much suffering! Things scare her, she wants to leave and not wait, she wants to pull me out the doctor’s rooms and doesn’t want to be examined. It’s traumatic for both of us-her being ‘tortured’ and my dealing with her very big emotions while wanting to cry along with her.

Her dad was also not feeling up to it because of her screams and cries and how helpless he feels. He said he’d take her only if or our eighteen year old son went alone.😅I chose my son, who was NOT enthralled with the idea.

She came home screaming.

But guess what, she didn’t scream going in. Didn’t scream or even want to leave while waiting to be seen, and except for when the doctor wanted to measure her height, she allowed him to do other checks!! The ONLY reason she came home screaming was because near the END of the appointment, she spotted a wooden piece of art that she wanted to take with her.

And while waiting for the appointment to start, she spotted her favourite calming object- a plant! Her dad asked, “What’s that?” And she actually answered!! “It’s a tree. It’s leaves.” And she tried to pull her brother’s hand to pick it up.😅Thankfully she didn’t complain when the answer was no.

All in all, it was the best doctor’s appointment she’s ever experienced. Her anxiety and anti psychotic meds are helping! (We still get angry cries over wanting things to happen that can’t ever happen.) I was right that she needs oral antibiotics, and her brother came back much happier than when he left. I mentioned the being right thing because I didn’t want to send my husband on a fool’s errand and have him return telling me I was being worried for nothing.

Maybe one day she will answer all questions and tell us her thoughts and not just blurt out random words like, “ Tiger!” out of the blue when she does speak. Maybe one day she will answer more questions than she can’t. Maybe one day I will know that she UNDERSTANDS me when I tell her I love her.

Maybe.❤️

PS. The doctor asked if she didn’t need Ritalin or something because of how hyper and all over she was. I am so vindicated! Not that my husband said I was wrong in thinking she probably also has ADHD, but it felt good for a professional to wonder if it would “not help calm her down.”😅 We have over a year till she’s even eligible and I don’t even know how we’d assess her for ADHD given it’s all about ability to focus on tasks and how quickly one loses focus and the weak points that show typical learning disorders found in ADHD. She does not stay still! At all! But, we will cross that bridge when we come to it!

I Summoned the Devil

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I summoned the devil. And I knew I was about to! But, I’m desperate. And have no clue what exactly I’m waiting for from the rheumatologist’s office . Are they going to appeal? Are they done with helping me? And the last time I asked for info a month after the original request for change in meds, I was reprimanded like I’m some irritating dummy by her nurse. So I won’t be asking.

Back to the devil. This devil is an oral tablet called Sulphasalazine or Salazopyrin. I emailed the rheumatologist asking if I can try it for my fingers and other peripheral joints. See, my first rheumy gave it to me in January and it did nothing. In May, the next rheumy said they didn’t know why I’d been put on it and it alone seeing as my worst symptoms were my spine and SI joints, which Salazopyrin apparently doesn’t work on. It works better on the peripheral joints – fingers, wrists, feet… Given how bad things are, I figured, “Ok, I’m getting worse. I have no clue if the rheumy’s office is appealing nor what the way forward is because they ignored my first email saying I’d be waiting to hear what the way forward is. So, let me try Sulphasalzine as I have some in my house and maybe it can reduce my suffering. “ I was really upset the night my HAND of all things, woke me after a terrible sleep anyway. It is just such a small part of my struggles, so it was a personal affront that it- not my back, shoulder, neck- decided to scream out that night!

This is now war!😅

I emailed the rheumy asking if I can try it, and she said yes, and sent a script. I knew what I was letting myself in for. It’s so horrible a medicine that you have to take it super slow before you get to a therapeutic dose which is four tablets a day. I suffered starting on two tablets last year- headaches and urgent diarrhea -so yesterday and today, I only took one. And even so, the side effects have begun.

I knew I was calling more suffering upon myself. And I know it takes six weeks to kick in once on full dose, so I’m giving it eight weeks before I assess if I should continue.

Send help. 😩😉

ETA: As I was sending the script, I saw that my current rheumy has very different instructions. She actually DOES want her patients to start on one tablet first. Heh heh, I’m not as clever as I thought. The first guy just wanted to overwhelm me too quickly

Over 43 Years

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I spent over 43 years feeling and knowing I didn’t matter. Even by age six, I was hiding my physical pain. Till one night my parents caught me thrashing around the bed which eventually led to a colonoscopy when I was seven years old that apparently showed I had Crohn’s disease.

The high school deputy principal couldn’t know it. Couldn’t know that I and the younger Coloured girl who lay next to me on the single bed in the sick room had no ‘love’ to go home to. That we were- first time meeting though it was- the only comfort the other would find. I was feeling tiredness and pain and she was having terrible period pain.

We knew we’d have to take a long walk to the bus or taxi rank and then sit in there with a whole bunch of strangers and then go home to a quiet house because our mothers wouldn’t leave work just because we weren’t well. So we stayed in the dark, sometimes sleeping, sometimes talking about how horrible we felt till the deputy headmistress came in and scolded us, shouting as if we were committing a crime, telling us that if we weren’t going to go home, then we should go back to class.

I don’t think she ever thought that we would have wanted to go home..home had represented comfort and care.

And so, two years ago, my husband lectured my parents about how they not only didn’t love me, the only child who consistently cared for them, bought them food and electricity etc, but they had taught my younger sister to despise me too. And he had had enough of her rude demanding messages to me. And had had enough of how they didn’t care when I was sick or recovering from surgery.

Today, we took the children to Vredenheim Animal Farm. The farm part wasn’t much to write home about. Giraffe House is much better. BUT they have been saved by the big cats. All taken from places where they had been born and raised in captivity- no idea how to survive in the wild, and so kept safe there to live where they’d be fed instead of dying quickly through never having learnt how to hunt.

I’ll add way more photos and video and info about how autism also joined us, in my next ‘random’ YouTube video once I get time to do so. This is just a glimpse.

So, when someone remembers my invisible disease, it means a lot. Some days, even when my arm would be in a sling, it would be forgotten by those who were meant to love me. Today, it was our ‘regular blog commenting’ lady’s turn to remind me that she thinks of me in my entirety when she asked how in the world my back survived my daughter who insisted she was tired and needed to be carried. (Wearing a pillow case on her head as she was pretending to be Pharoah.)

I matter. My silence isn’t taken as a sign of a lack of suffering!🥹She’s so far that our cultures are very different- my dry humour doesn’t translate in her country. But her heart crosses all the borders between us.

She didn’t just see a mom carrying her daughter. She saw an AS patient straining herself even more than normal. I didn’t even tell her that the ride there was already unbearable for me. I didn’t need to. She would have guessed it had she known how far from home the place is.

Connection. It was through Facebook in 2008 I believe, that we connected. And that connection has stood the test of time. We have thanked God for giving us the forgiving, gentle hearts we have, willing to treat kindly those who have hurt us and lied to us. We have discussed our children, our husbands who are generally absent – hers working in a different country and going home once a month, and mine traveling a lot and running and resting a lot when home.

We have despaired, and we have thanked God. We have worried about mutual friends and prayed for our sisters. Maybe it’s because she too had a complex childhood with insults thrown at her. Maybe that’s why she’s a better person. I firmly believe maltreatment in your formative years either leaves you bitter and unable to be human and kind and gentle, or better. More empathetic, caring and concerned about others. She is the latter,

I’m thankful that shared suffering and lack of love has led to a love that transcends borders, time, and distance. I pray we both allow God to transform us so that we all spend time together in heaven where we won’t have any sick children to talk about, or lack of this or lack of that. Just an abundance of goodness.

And lots of love, from the One Who is love personified.

I’ve Got It!

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Today’s exercise gear- winter is here

I always used to not get it! Wow, that was grammatically messy. I never used to get it when they would say AS is worse when not moving and better with movement. After all, the more pressure I put on my AS joint, the more my leg buckles and a sharp pain shoots through and I cry out.

That doesn’t happen when I’m lying down!

Today I finally got it.

I almost didn’t get out of bed but..you know..they clam that CHILDREN NEED A MOMMY. So I got up. Almost instantly, the excruciating “Why am I still alive” all over body pain disappeared! It was now more specific areas that hurt. My SI joints ten minutes into a walking exercise session, my fingers which I out gloves on, and my head and neck.

It still sounds bad, but it is far better than the all over body pain. I really thought I’d have been dragging myself around and wanting to sink into a puddle and just cry. But I don’t. Not when I made myself get out of bed.

Now I understand the whole “Move, you will feel better” trope. Except when your joints are damaged and the arthritis is in your joints, it’s indeed that you will feel BETTER, but definitely, not OK.

And that’s ok. I’d rather feel this than the pain I felt before I got out of bed. Scary how we swop around the type of pain we’d ‘rather’ feel. Scary and sad that we (those in my shoes) have not yet reached the, “I have been great but then a flare came up” stage.

Maybe it will come. Let’s keep hoping!

No News-Saturday AS Awareness Day

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Faking being ok even though she told me not to

I’m seriously going to use the last three injections in my fridge!

Medical aid finally wrote today. I’d been waiting and waiting and had planned to email the nurse to ask what’s up.

Well, what’s up is NOTHING. Medical aid wants a letter of approval from the rheumatologists’ panel, and information from my doctor about what medication I’ve had and for how long. THEN they will decide if they approve or not.

This was not the email I thought I’d be reading when I opened it. I can’t even say I’m waiting again because I don’t know if the panel has met. I don’t know when they’ll meet. I don’t know why my doctor didn’t send the info together with the initial application anyway. I’m disappointed, folk. I hurt. I hurt. I’m getting even less sleep than ever. My neck, my shoulders hurt at night on top do the usual back and elbow pain… Today, I drove my daughter to her final Biology practical exam prep session and the entire way there and back I stopped myself from telling her that my foot hurt every time I moved it to brake or accelerate. The rheumatologist had felt it even before I consciously suffered from it-the damage and swelling in the front of my foot where it joins with my leg. I have NEVER had that area that sore before while driving, driving was actually ok for the foot and only bad on my SI joints and lower back.

Well, all bets are off. It’s like Satan has slowly been letting out bits of the fiery pit and sending the flames to me and now it’s getting hotter and I didn’t know it could. I know I always wonder how BAD someone’s pain is when they complain. It’s not like I can feel theirs and they can’t feel mine. Maybe compared to mine, it’s virtually nothing. Maybe it’s the same, but telling me you’re in pain ain’t enough. Is it keeping you awake? Can you ignore it and it remain in the background of your day?

I am suffering incredibly especially today after the long drive to the school (Let’s just say they were all shocked to find out where we live when my daughter mentioned it, and wondered about heavy traffic coming in), after waiting for class to finish, and the longer drive back. (Longer due to traffic.)

I already can’t sleep- pillow or none- because my neck and shoulders are fully in the mix now, not only my elbows, fingers and si joints.

I want to start treatment. I want to be better. I wanted to do a movement activity with my little ones this morning but couldn’t, I would take a step and leg would give way and an unexpected bullet of pain would streak through my SI joint and cause me to yell in pain.

I need the medication.

I don’t know when the panel will meet. I don’t know if they’ll agree that I need the mediation. I don’t know when my rheumatologist will do her part.

I just know that I feel like I’m losing my mind.

Please God, help me. I don’t want to buy a walking frame because of my leg that suddenly goes on a break when I need to use it. But I don’t want to get used to limping and shouting out unexpectedly. I don’t want that to be my norm. I’m too young for this. I can’t do this. I will go insane. So, please help me.🥹

And no, there’s a reason we are stopping the injections I was on. If I do end up desperate (I still have till Saturday for my “No injections of biologics till two weeks past surgery” rule to take effect, then I’ll inject and be worried that it will again reduce my immunity TOO much and I’ll catch a sickness and then I’ll get approval but be too sick /still sick and unable to start. Not that I know how soon my pharmacy will have it. They don’t stock biologics as not enough patients have them to justify them buying them without knowing there will be a patient who needs them. It took two weeks for the Enbrel to be in stock at my closest pharmacy.

What do I want you to be aware of?

The patients who are so desperately in pain, who have ‘failed’ their treatments and know that tomorrow will be even worse than today. I looked up voluntary assisted suicide on Sunday. Someone with AS did do it. He was in Canada. His loving wife cooked lovely soup for his last meal. I want you to be aware that there are some of us who are like that. So desperately aware that only death brings release- certainly not night time no matter how many pain killers are in our system.

I haven’t reached that stage yet. I’ve only failed one biologic. But I know the PAIN and wishing for death so it finally ends. We aren’t only the successful people like Whitey Basson for whom AS is almost meaningless. We are ones who feel like we are dying daily, (And whose lungs actually are.)

I Shall Not Be Moved

Grace by any other name1 Comment

I went to YouTube to go find this song.

It’s my war cry for today. I’m figuratively on my knees- heart screaming and my invisible eyes weeping. “I CANNOT DO THIS!” In fact, yesterday morning, I mistakenly said it out loud, “I can’t!!” And my son, sweet Micaiah asked from another room, “You CAN’T!? What can’t you do?” Oops. I hadn’t realised I’d spoken out loud. So I explained that my fingers weren’t obeying me. I couldn’t open the blister packet and get his tablet out. At the same time, AS fatigue was so strong that I felt I had no energy anyway.

“I can’t!“

My shoulders are steadily getting worse. I handed Amarissa her tablets while I gently raised my arm, and we both heard my shoulder, “Crraaaccckk!” And it stopped moving. For a moment, my arm wouldn’t go higher.

“I can’t!”

Today, I had so much I wanted to do. But just bringing down and carrying bits of laundry (No lifting heavy things for two weeks after surgery) caused lots of uterine pain and I had to clamber into the bed-womb and bones all screaming,

“I can’t!”

There’s a spot on my shoulder where I rub, and I can feel the sore spot. It’s not in the joint. It’s not where the night pain is. It’s just purely along the bone. When I turn my back, I feel my neck creaking, getting ‘stuck.’ I walked into the pharmacy at 9am, hours after I woke up and yet my legs were still stiff. Not normal. I walked as if made of… I don’t know. Like a fictitious zombie would. I felt shy. I don’t want pity. I don’t want to be noticed. It’s as if my leg didn’t want to move. Didn’t want to obey me. It was telling me,

“I can’t!”

I can say for sure that my right SI joint didn’t benefit from the infiltration. They’re charging us R2500 for that!🫣 (Oh, I’m mentioning the prices because there are people I know who are saving up to do things privately but don’t have medical aid. I’ll be transparent.) I also owe for my blood test. My husband thinks I might even be worse. Yet another reason to never try again!

Speaking of blood test. My kidney function still says kidney disease stage 2. No improvement there. It actually decreased by 4 units. But my liver is still fine.

We have a slow burning panic going on. It’s not only me. My husband is also itching for me to restart trying to slow down this stupid. He was asking what the hold up is, asking if the they can’t just write the script and we see if the pharmacy would refuse to order it without medical aid approval. I had to go collect some of our chronic medication on Sunday so he drove me. My pain and sinusitis meds and my daughter’s ADHD meds, heart meds. Though I had picked the option to STOP the Enbrel, they’d ordered it anyway. He was tempted to pay for it so we are “at least trying something while waiting for the new medication.” But I still have three in the fridge. Surely medical aid will have agreed by then? Surely the panel will have sat by the time six weeks is passed, right. (If I need arm surgery, plan to give myself two weeks after the other op before going in again for the ulnar nerve op. And then after that op I need to wait two weeks before I can resume. Surely they’ll have approved and I’ll have ordered the new injections? If not, I WILL use the Enbrel in my fridge while waiting. This disease doesn’t wait. I saw yet another article about people dying because of crushed throats when the disease bends them over. I’ve seen people not even knowing this disease can do that- make you bend and unable to move your neck. Poor woman was asking in our web group why she’s leaning forward and unable to look up or to the side. 🥹”If it’s part of the disease “or something else as the forward weight makes her stumble and fall forwards sometimes. I wanted to wait till after the teens are done with exams then have my ulnar nerve surgery… But the numbness in my hand is too noticeable and the pain, I can’t ignore it. Like what AS does to bone, once your muscle is wasted and useless, that damage cannot be undone. And I am losing my grip strength. I’m also hoping that for the first time ever, I’m wrong. I would rather go tomorrow and be told I don’t need surgery. Because.. that nerve pain is horrendous. Awful. Unbearable. And it took a year for my skin to not be sensitive as much. How long this time, when the surgeon will have not only released it, but actually moved it to a different place completely, as had been the actual plan last time? It’s another slow/ burning anxiety deep inside. This one, not even my husband knows about. I checked out some soft round pillows with holes on which I can try rest my elbow at night. If the surgeon says I’m headed for another operation, I’m going straight to the aisle and buying it and hoping my elbow will be able to be positioned so it’s in the hole so nothing hurts me. I recall my sad updates to friends who used to ask about recovery. How helpless I was. How no painkiller touched the pain. How even my own pyjama sleeve hurt me when touching my skin, let alone pressure off my arm lying on my mattress, or a sheet on it when on my side… I am dreading it… I am hoping he will tell me it’s all good. I still have last week’s surgery gas pain to deal with. Another surgery..? 😏

“I can’t!”

I have parenchymal bands in my lungs, the lower lobes are collapsed and my lung function is decreasing. When you look up “parenchymal bands” you find one article that says it’s mostly in end stage lung disease and another article that says you might consider hospice at that point.

What?? No way! I still have much life in me. Even if it’s not a good life. Body wracked by pain. Nights..My neck and shoulder scream too. And so, in the absence of any kind of relief from the relentless suffering, I looked for “I Shall Not be Moved.” I don’t care what God allows, like a tree planted by the water, the tree in Psalm 1, I will remain grounded and rooted in Him. Though I really feel like He is slaying me, though I feel the AS moving through my body and I can’t do anything about it, I will trust in Him. And I will not die soon.

(My lung function is dipping below 94 at night. It is going to 92%. Normal is alive 95-100%. When it gets to 88, I’ll tell the pulmonologist. We will need oxygen at that point.)

Still…I’m “on my way to heaven. I shall not be moved.“