Tag: AxSpa

The First Frisson of Fear

Grace by any other name2 Comments

Haha, I was looking for a picture of a skeleton and this one reminded me of first year speech therapy and audiology. We were each given a human skull to take home or to res to keep reminding ourselves of the bones of the inner ear etc. My husband-to- be thought I was creepy. I didn’t even think about it being human. It was more real cutting open the corpses in the hospital basement. But even then, I just wondered if the corpse I was working on was one donated specifically for us to cut up as some people do (Leaving their body for research or students) or if it was the corpse of an unknown homeless man whose body was brought in for students to mangle learn on. Those were two of the main places the university for corpses from.

Back to why I’m posting today. The chronic issue that gave rise to the name of this blog. I am starting to feel my skeleton and the first frisson of fear has begun. Unlike Enbrel which started working on my AS symptoms after four months, Rinvoq started in the third week. And the difference was much more obvious than with Enbrel – until the flare started last week. But even then, I didn’t have the usual, “God, this is no life. Please kill me,” request.

Until today. In the same way Rinvoq works fast, if you’re just an hour later than normal, your body starts acting up. Now it’s been three doses missed and the cystitis symptoms are still there and instructions from the rheumatologist were clear. “Do NOT resume the Rinvoq until all symptoms are gone.” And they’re not. I still have the pain. And honestly, I wouldn’t want to take it until I am healed. Who would want to change a hopefully easily treatable situation into a potentially kidney function threatening (As if my kidney function needs to get worse as it is), if not life threatening, situation?

So, I wait. But, as I just told my mother in rural Zim who asked how I am, my bones are crying now. I am in extreme pain and the fatigue has returned. Even my sternum is reminding me it exists. My children obviously see it because they kept telling me to go rest when I was tidying their dishes and plates up.

The new fear doesn’t end there with just the fear of an infection that won’t respond to the first antibiotic and will need longer treatment. Remember the ‘many months long’ paronychia when I was on Enbrel? WILL this infection heal soon? But also, what if more infections keep coming and it turns out I can’t keep using Rinvoq because it might kill me, like the way we had to stop using Enbrel? I’d be bereft. This has helped me more than any other attempt.What if the next infection damages more of my lungs? What if the next treatment attempt after having to quit Rinvoq will be like Cosentyx? Useless to me?

As I said, never in my life do I recall having cystitis. I just knew I had it because of my symptoms matching it, not because of experience. The test just confirmed it. By the way, I’m thankful for Intercare that always has appointments available to book online for the following day. I’d also never had a paronychia till Enbrel.

So now, I actually have to pray about these extra possibilities. All along, I’ve been masking up to try avoid those kinds of infection. But as the finger and now my bladder have reminded me, there are infections you can’t prevent. Enemies you can’t predict. Things I don’t think of as threats when I’m praying to not catch a cold or flu. And now my minor blood pressure worries have truly become minor. I guess because I knew that there are anti hypertension medicines but there’s no other way but to stop if I keep getting sick.

And with the improvement I’d started to feel, that’s a big problem. My daughter even asked how I keep making my bones crack when I get up. She thought it was on purpose! Like when people crack their knuckles. I wish!

Ankylosing spondylitis has reminded me who’s boss. It’s still that same incurable, progressive (ie it gets worse or treats you worse as time goes) inflammatory autoimmune disease. As if the leg that’s permanently painfully limping if it has to walk for over two minutes straight or try to exercise wasn’t already reminding me.

Chronically Yours signing off.

The one whose club you don’t want to join and to which if you belong, you wish you could get out of.

And don’t forget my children. My ten year old said she has always remembered my telling them never to play with fire. But, she thought the BLUE flame on our gas stove wasn’t fire. She touched it. It hurt. She was surprised.

She’s turning 11 this year.

As I’ve said. I need many of me to watch them and keep them safe.

My heart sank. At least she’s stopped self harming with needles and scissors. But yes, this life is extremely unpredictable and WORRYING. Their angels are working over time to keep them from permanently leaving this life. She’s promised never to climb up here again.

She can’t ever struggles to keep her promises.

Hmmm

Morning Has Broken

Grace by any other name1 Comment

Autism and ADHD aren’t famous for helping their ‘victims’ sleep well. I have three out of four who don’t go to sleep well, don’t stay asleep, make hectic noise… Some mornings I don’t get to study my Bible because noise woke me and continues. Sometimes there’s boredom and one wakes the other. It’s just constant awareness of ‘something will disturb the night and/or early morning.’

And then when you wake up, you have my chubby five year old and her driving commands. On weekends, her dad takes her on a few of the drives. At first he’d tell me, “Just say no!” when he’d see me reach for my car keys. Now he sees why I don’t. The screaming and crying destroys everyone’s peace. Agreement leads to peace. And added pain for me in my bad leg.

So, we have Violet who comes in too often. The agreement was Monday- Friday and two Sundays till 1pm a month, but she tends to come in on more Sundays than she should! And my nine year old doesn’t help. I cringed one Friday when he said to her, “So we will see you on Sunday??” And she agreed with him! I reprimanded both of them. But, they’d made their agreement!

Some days, I want to cry. Since yesterday, I’ve been in a flare. Bones aching, fatigue back, almost didn’t reach my 10000 steps. Morning has broken and my problematic right hip is not giving me s break despite my 200mg Tramahexal. And that’s on top of the tongue that has two sores on it that are so bad I’ve asked the rheumatologist for help so I can eat.

I agree with the rheumatologist. The stress must be causing fibro issues. But wow, it took three full months for my tongue to obey my brain. It was scary. So I’m never touching Lyrica again. Which means that though I’m already on an antidepressant because it helps with nerve pain too, I wake up with a sinking feeling or am woken up by someone that will cause a sinking feeling that lasts throughout the day.

Why?

“Another day has begun. What will I be putting my body through today? How many times will I reprimand fighting children? How many times will I have to deal with my two PDAers demands and my ten year old’s struggles and my non-speaker’s demands? How do I get out of the multiple drives?”

Violet tries so, so hard. A few times, my girl comes to me saying, “car..car…” and then she is content to play and Violet watches her to ensure she doesn’t hurt herself. Other times she pulls her brother onto a scooter (really meant for younger chosen but her likes to ride on it anyway) and he has to keep riding around. One time, that ‘play’ caused her to speak! I was in there watching them just before I made lunch, and every time he stopped riding, she would pull the scooter. At one point, she shouted, “Good job!”🤣

Sadly, more often than not, she can’t be distracted or doesn’t allow herself to be distracted from her driving urge. And so, if I don’t go, if I try rest, or if I try continue working, it will descend into screams which cause her twin to cover her ears and ALSO scream. And then she and Micaiah complain to me that “she’s making noise!” And if I am in the loo (my bladder etc issues are back and I refused to catheterise myself daily so I have trouble with that aspect- taking ages to relieve myself) she will become so upset that there reaches a point where even when I am now driving, she can’t regulate anymore.

So..I’ll have to do it and have to when she wants. This morning, I’m truly dreading this day. But also, thankful that for a few hours, I’ll have someone in the house who wants to take the burden away.

My children’s photographer when they are at the playground.

Good job indeed. Earned me a few minutes’ rest and time to make their lunch without Little Princess pulling me or pulling plates or dishes out my hand because I’m not going to the “car.”

Hahaha Too Dramatic!

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Nobody ever tells me (unless a friend or two catch a photo of me like a friend did who saw this photo on my profile) I look good. So I fight the past on my own. If I like my look, I take a photo of myself. My ten year old (and her siblings) used to visit my parents. Heard the snide comments, the yelling..and could feel the dislike emanating from my mother who didn’t accept her and our other adoptee. She asked me maybe three weeks ago, so randomly! “Mommy, how come you are so kind and loving? Where did you learn? How did you learn to be nice when your parents weren’t nice?”

So you see, even though she never heard the comments about how ugly I am, about my forehead being bc too big and my lips being “embarrassing as if I’m a drunk,” she knew.

And it felt awesome knowing she feels great. That I love her and she knows it.

So..call this a late lesson in loving myself. But honestly, I took the photos because I can still stand up straight. AS hasn’t taken that away from me and I’m so grateful that if I’m just standing still and not walking and limping, nobody would know I have a disability. I will photograph every moment of normality when I feel I look nice in my eyes, in case it ends one day and I only have photos to show me who I used to be externally.

But, that’s not the aim of this post! Because I’m sick, the minds of my family are a bit… I think they carry trauma!

Exhibit A. The week the teens came home on holiday, they had turned on one of the educational videos I put together for the little ones. As I walked towards the TV, a song was playing, “Circle, circle, can you draw a circle?”

As I watched the perfect circle being drawn, I replied to the question, thinking of my not so great circle drawing, “No, not well actually …” My teens both exclaimed, “Oh no!” and “ Oh, sorry mom!” I asked why in the world my poor circle drawing would elicit such responses!

They said they thought I’d said, “I’m not well, actually!” And became worried.😅😅😅

Exhibit B. This morning, I read in an AS group that we ‘should be’ dyeing our hair blue next month for AS awareness. So I tell my husband, “I’m meant to dye my..” He interrupted in shock. You’re meant to DIE?? Why??

I cracked up again! He was truly wondering why I had a “I should be dead” idea going on😆

Behind the laughter, is the wheezy chest I haven’t told them about. I am faithfully using my pump but I don’t think my body is reacting as it should. (YET) It’s the body so sore and so tired that I literally feel like I am dying. It’s the fear that while I’m waiting for the Rinvoq to start working, it could be killing my heart or liver. Two of our members were hospitalised this week with blood clots in their lungs thanks to Rinvoq. The side effects that are happening almost daily to our group members are so bad I’m not telling them about them. So I actually AM living with a fear that I’ll die. After all, what happens to the members who DO die from blood clots? We won’t exactly hear from THEM. How many are there?

And so, I ignore all the anxiety and laugh at my poor family that thinks I’m “not well actually” and think I’m predicting my death. We all laughed. And we need every moment of lightness possible.

What’s a mother who can’t mother?

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“Mommy, I’m her baby!”
I played this purely for the bird☺️

The rheumatologist believes it’s high time I hang up my gloves and stop teaching.

The rheumatologist is VERY worried. I came this close to crying because she kept exclaiming and saying she’s so sorry and it just almost overwhelmed me. I had gotten up when she came in to call me, telling her, “ I’m surging!” when she asked how I am, but the long trip to her area, and a long wait meant that when I stood, my leg screamed out and I couldn’t stand properly, couldn’t walk properly.

“Oh!! What!? When did this start?? You’re not ok!”

I told her, “Honestly, I’m not ok at all. It’s been bad.”

I told her it’s been at least a month now. A month of horror. She didn’t even finish the examination because my legs wouldn’t move. She tried to bend my right leg this way and that way but could feel the joint resisting. My fingers, wrists, hands and extra kilogram all tell the story. A body in crisis. A body that can’t move without stiffness and pain.

She has doubled all my medication. Doesn’t know how I’m sleeping, I told her I’m NOT! Every type has been increased. From six of one type, to 12 a day. From two of the opioid, to four. And I must double my anti inflammatory for the next week and then tell her how I am. Only when I got home did I realise she still thought I’m on the vertigo inducing one. So I’ll try again very slowly and see how it goes this time. After the week of double the anti inflammatory, I will then start on a stronger dose of the anti inflammatory. I don’t know what the plan will be if I’m not any ‘better’ in a week. She also injected me with cortisone.

She discussed schools and homes with big yards close to her and to special schools. And she was shocked that I taught the teens. She thought I was homeschooling only the young four because of special needs.

So yep, she’s looking forward to them passing. So am I! Please let it be so!

She has begun the process for requesting more Cosentyx. She said she loved my motivation letter and that I’m not the norm. Most of her patients don’t fight with the medical aid company, they make her the face of their fight. So it felt good to not be alone.

I drove home past shops I wanted to get veggies from. I’m in too much pain. And then I got home. Went to collect a few items of laundry that I knew would need to be in front of the gas heater or iron as it’s too late in the day for them to dry, came into the house ready to collapse into bed.

But..my angel who refused to go for a walk with her siblings comes out with big brother and pulled me around. She wasn’t sure what she wanted at first. So she took me around the house a bit, then into the play area then finally decided she wanted me to watch her jumping on the trampoline. And like every loving mother everywhere, I stood for as long as I could, and I watched her, spoke to her, loved her. Smiled back at her. And walked away after long enough that she was ok with it. (See, when I had tried to escape before she got on, she kept pulling me back to her side.🥹❤️❤️ If that isn’t as loud as “Mommy!! You’re back!! I missed you!” I don’t know what else she’d need to do to show me. Not when she’s shown me in her own very clear way,

So, I’m home. Thankful for all the doubling of my four types of meds and hoping the injection also starts working. And then, we see if Cosentyx will stop this level of torture

And yes, she looked at my blood test results and was NOT happy at how the inflammation is. Are any of us?

As for the special school issue? I’ve tried and searched and desperately searched this week. She too only knows of two government schools and they’re both too far for me to drive to every day. (They’re in her area.)

But what about weekends anyway? It will still all be on me. The videos, the lack of rest, finding each of them activities, feeding, preparing food, handling the screams and the hair pulling and pushes. Trying to stop the nine year old from banging on cupboard doors when the twins are trying to sleep, sorting out her screaming brother.

I won’t hide this truth. I am a Christian. I believe God have life so only He should take it unless I’ve prayed and He has clearly said I will die soon. Only then would I believe voluntary euthanasia is justified.

I’m not at that point yet where I am sure He can’t change His mind and free me of my suffering. But I did wonder. “Was it sin when kings fell on their own swords rather than to be captured by the army? And if not, would it be sin if I were to fall on my own sword and end this suffering instead of being even worse than this? Would I miss out on a peaceful and God-filled eternity if I stopped living? If I stopped the unbearable suffering? Or would God raise me and tell me that He would have understood back in 2022 when I started begging to die, if I’d taken matter into my own hands, knowing how much worse I was when I finally breathed my last?

I don’t know. And so I have no choice but to live. But it stopped being a HAPPY life long ago. Just typing this has cause excruciating pain in fingers, elbows and wrists. When it’s all your bones crying, you end up saying,

I really, really want to die.

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.

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.

AS Today

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Still waiting. I see some movement on my app. Things that were approved in the background and calls to medical aid from a specialized pharmacy my current rheumy uses. A pharmacy I signed consent for to distribute the Cosentyx. So I’m hoping they will email me with good news soon! Pretty please.

Today… When you think you can’t feel worse and still survive, you do. You keep breathing, despite. You move even though your bones feel like they will split. Somehow, you keep living.

I was so excited reading of other women’s struggles with showering. Fatigue overwhelms us and we do it through sheer force. Some don’t shower daily. And others go shower only when the husband tells them they’re becoming a bit stinky. I’ve never reached the “Nope, not this week” stage, but there have been days I’ve wished I could just turn the water off without putting soap on face cloth. Or mornings I am even more tired than when I got out of bed- more tired half way through my shower than before I got up. I’m so relieved to know it’s not just me.

The one person who commented that she USED to feel like this is someone who has found the right biologic for her needs. Will I ever find one?

I was also grateful to read that many of us struggle with tight clothing. Or clothing that is skin tight. Like leggings, bras, waistbands… I prefer dresses over skirts because of that. It feels like my skin is being pressed hard. Like my clothing is painfully tight. Knowing others also prefer to be naked in summer (Well, not also because I don’t ever stay naked!), are looking for comfy bras for when out in public… Winter is hard with its need for layers. Will see. Maybe look for long long hoodie tops that are as long as long dresses, and wear tracksuits under them, instead of leggings, or track pants with skirts and petticoats. Way before my diagnosis I bought one top fromTruworths which was advertised as long but it only reached my knees. I know. Boring if you’re not living this discomfort! Sorry!

But again, I’m thankful. If we can’t even shower how am I teaching and smiling and planning and printing?? How am I making things happen every single day without collapsing from the sheer mental strain of keeping my body moving when it only wants to rest?

I wish I could share my suffering with my family. They’d really appreciate every grain of rice, every veggie burger if they knew how much effort it took.😅

But, I can’t! So, if you’re friends with an AS warrior and they never seem to want to go out, this could be why. Terribly painful bones, and/or a body that wants to collapse and feels like it’s carrying the weight of the world.

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.)

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.