Tag: AS warrior

Oh, I Want My Amazing Coloured Coat Too!

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We sang this in school. It was one of my favourite choral productions- Joseph and the Amazing Technicolour Dreamcoat. We sang a lot from there, a show I’d never seen but knew was done by someone extremely famous, Andrew Lloyd Webber. We sang a LOT of his songs in our choir.

My friend told me of how she blacked out this week and got injured. The world no we chronically sick people live in is such a parallel world. We are constantly suffering while everyone rose lives their day hot by hour unconscious of the pain, while the moments that allow the sick one to forget the suffering are minimal. I blacked out once at school. Found myself at the bottom of the steps with my friend extremely concerned and wanting me to go to the sick room. But I didn’t want to miss choir, so given I was feeling ok, I pressed on. I didn’t even think to tell my parents. As always.

This is the same school friend who would tell me I’m walking “like a granny” when what we now know are AS flares started up. The pain in my feet would burn so bad and I’d try curl my toes so they don’t hit the floor hard. My toes and finger so swollen I could barely hold my pen to write and sometimes just listened after showing my teacher why I wasn’t writing. I’d get home and make a mug of cocoa but my fingers couldn’t even curl to hold the handle of the mug.

I don’t know why, but I woke up this morning and as I tried to psyche myself up to get my pain tablets but the pain so bad I didn’t even want to move, I remembered this song. It was sung at the beginning and end of the play. For me, it represented Joseph in prison. Alone and sad. Weeping while the world slept. Forgotten. Sold by those he loved. So alone in his innocence. Just like me when I was a child.

What memories does this little one have hidden behind her smile? Nights of pain. Nights of lying on the bed she shared with her parents rolling around trying to figure out why her legs hurt so much, night after night. Doctors claiming it was growing pains. I’m still waiting to grow, then.🥹The stomach pain bringing her first colonoscopy two years after this photo. The daily burning abdominal pain as she walked to the train station with her daddy after school.

When we were still newly wed and living in Kenya, they had the production going. Joseph and His Amamzing Technicolour Dreamcoat. We’d stopped watching most shows by then but this I just had to see. My husband had also done it at his school, so it would have been nostalgic for both of us.

As I sat and watched, the tears just flowed for so many reasons. Nairobi, Kenya was the first time I knew that Black people (not just a few here and there, but almost an entire cast!) did theatre. It was amazing watching all these Black people singing songs we sang in our very British schools. Just seeing them so energised and hearing those lyrics coming from their lips was emotional. I don’t know how many black people TODAY in South Africa know the works of Webber.

Singing the lyrics as they sang all these songs we’d sung in school, took me back to school. The choir was my safe space. Music always took away emotional and physical pain. It was there too that instead of insults about my looks or body, I was told I could do something well. Very well. So well the choir teacher would tell the first sopranos that I was carrying them and they were flat so I should keep quiet and they must learn to sing the right key. (I can see where I got my absolute distaste of bad singing😩🫣 It’s jarring to my ear. There’s a church that has a very flat woman who leads with a very loud voice. It’s unbearable on top of how many don’t stick to the actual tune which we at our Xhosa churches grew up singing because we sang the notes as they are in the hymn book.) I digress. Beautiful music was my healing place.

I could forget myself and be the person singing the words. I could be Joseph. Betrayed by those who loved him. I could be Joseph, seeing how God allowed the bad to lead to great good. A good better than his past. I could see God better when I sang to Him. Even in normal assembly.

God appears vividly coloured when I sing, just like when I’m reading His word. I can forget the pain I’m in. I can forget that yesterday my ten year old wanted me to go back to bed as the flare began again. I can forget the neck pain, headaches, deep sore in my gum preventing me from eating ok and brushing my teeth (Rinvoq side effects), hip and leg pain when I’m lying here crying over lyrics from decades ago.

I too wish I could have someone “give me my coloured coat, my amazing coloured coat.” (Last line of the song) I just want to be ok. Joseph wanted to be ok. And the God Who eventually led his bones to the promised land, will heal mine one day. But oh, I close my eyes and know the someone far away who is weeping, is me. And maybe Flydah in Kenya, far away. Thank you for reading my heart ramblings and encouraging me.

By the way, I saw THIS version below first when I looked for the song so I could sing along to it. I felt so stupid as I watched. It took me ages to figure out why the lead singer was wearing a colourful ‘dress!’ Ankylosing spondylitis brain fog. Even Ammy quotes “brain fog” at me when the cloud caused by AS messes up by memory or my speech. I love the mix of singers. THIS video is what made me realise how BIG this song is. I truly never knew even though people have acted the entire story. 🤦🏾‍♀️Maybe the blacking out and falling down the stairs knocked some brain cells out.

Rheumy Tomorrow. Museum the Other Day

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Telling her I’m giving up. Or rather, I have no more hope left in me. I’m sucking up all the pain tablets I can but getting not enough relief to even feel any relief.

Is there nothing more we can do for pain? Should I see a pain specialist? What can they do? Maybe I should! See, I knew this blogging thing was good for me! I hadn’t thought of going to a pain specialist. Rheumatologists seem to focus on the disease and not the pain caused by the disease. Surely there must be more. I’ll ask her what she thinks.

I did my second Cosentyx injection this Monday and bled for the first time ever. It wasn’t bad. Just weird. Unusual. I’m going to only do my thighs seeing as it’s once every 28 days anyway. I don’t think there’s any risk of the area becoming thick and hardened like with weekly injections. I don’t know if

Life continues as normal. One child pulling my hair and pushing me harder. Some days she’s so happy. Her twin is still into Pharaoh. And school is still hard on me. I’ve failed to find schools that don’t have a uniform, are affordable, and in a safe area.

But the good news is that my teens are definitely- unless they fail their final exams – going to the University of Pretoria next year. I’m so happy for them! I last reported that my son got accepted for both his choices and that my girl got her second choice. Last week she got an email stating she’d been accepted into the The Faculty of Health Sciences!! She will do her beloved Nursing!! Woohoo!

I’m so happy they are going to live their own lives. As I state in a video I posted last week, my mother stopped me from both my first and second choices (I wanted to be midwife or am social worker) because she said they weren’t high class enough. By having freedom to choose, they are living my dream, and it doesn’t hurt that one dream is nursing!🥹☺️ If she changes her mind, I won’t care. I told her dad that they might find they are actually more drawn to something else so to give them some leeway. Advocate Mommy!

We went to the SA national history museum this past weekend. As expected, our Reo motored through and out as soon as possible. I wish she could tell us what she feels. Too much space? Doesn’t like the aircon? Too dark? Too many weird people? She didn’t even glance at any of the exhibits whereas her twin was talking nineteen to the dozen!

You can find the video I posted with more (poor quality photos) HERE.

Edit: I’m not going crazy or overblowing things! Well, I knew I wasn’t anyway! I saw my blood test results after typing all the above. My inflammatory markers have never been this high. Not each time we’ve tested for them, at least. They’ve even gone down a normal 2.4 when I was on Enbrel – for a short time. Otherwise other times it was 6, 5.5… This time it’s 14.4 and our standards say anything above 5 is “High.”

This will really help with my case! I’m truly suffering and need more help than I’m getting. Clearly the anti inflammatory tablets aren’t helping and the Cosentyx hasn’t started (yet.) My liver is also starting to complain. Thankfully it’s not too bad at all. Just gone higher than the norm. My AST and ALT are usually around 7, 18 or 10, 18. This time they were 22, 24. I’m not worried YET because the highest normal is 36. And, my kidneys have stayed stable. It could be worse! But that is not much comfort given how terrible I feel day and night.

Something surely has to be changed, right? Or we really will do nothing until two months’ time when we re-test? How ‘dead’ will I be by then?

Perfectly Ok

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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-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.)

Pain and Providence

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I’m always at a 7/10 on the pain scale. But when flare ups hit, I’m in trouble. That’s when the pain flares up.🤣Just in case there’s any reader out there like me. I used to think it meant that the disease the person was referring to comes to life. But in some cases, it means it becomes a horrible monster as opposed to a raging beast.

That’s where I am. Have been since I think Wednesday when my husband said I’m walking like I need a wheelchair. The pain tablets..no combination of them has brought any relief at all. Nothing. I feel NOTHING. No reduction in pain at all. Just my bones screaming. My bones are behaving badly when I do my exercises too. It’s as if there’s a sudden fast decline this week. Better stop now. I still want to drive etc!

As for injection side effects? 24 hours of heartburn , feeling full after eating only a few bites, nausea… At least if I had side effects AND pain reduction, I’d feel better mentally.

Nothing. I’m lying on my back. This used to help reduce the pain. No can do. I can’t focus on reading my Bible.

Flare ups stink.

Mr Arthritis follower, how are YOU doing today? I hope you’re resting from suffering!

This is not a good Sabbath. Let’s hope next one will be better. And if you’re where I am-let’s keep holding on just a little while longer. Maybe the next treatment attempt will bring relief.🙏🏾

But, I almost forgot the gifts Providence has provided me.

Show off!

I asked my son to take photos for a vlog I want to post on where I am with this disease. My sweet angel insisted that she stop her lunch and “do what Mommy is doing!”

She even took time to reassure her sister who had been overseeing her eating, “Don’t worry! I’ll be back! I just want to copy Mommy.”🤣

My youngest blessing, her twin sister… I don’t know. I don’t know if it’s the classical music that research shows has made improvements in the brains of neurodiverse children; I don’t know if it’s the supplements research has shown help (in much higher doses than we can afford. But I figure less is better than none.) I don’t know if it’s because of specific efforts to engage in speech and for her to watch the videos I make; or if it’s natural progress. But my last born has been talking up a storm.

Well, a storm compared to her “non- speaking” days! And within a few days she’s even modified her speech to be more ‘correct.’ From pulling our hands and asking for “some grapes,” she changed it to “want grapes.” If she doesn’t see what she is looking for, she names it. Remember the frustration for me as Mom when I didn’t know what she wanted? And her reaction to the word “No” is so much better. The whole world no longer knows when she’s upset with us.😊

There’s a lot we don’t yet understand about her behaviour. She only had maybe five things she can ask for-for now!! A lot that perplexes and frustrates. I’m still sad that I can’t do her hair and she can’t even handle it being washed-resulting in some funky smells and a need to shave it off. But we all rejoice in the speech that’s coming despite us putting pressure on her. It’s a huge blessing.

My Blessings

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One of the AS patients who died this year had a wonderful mother. Yes, she didn’t see how bad things were, thought her daughter had to just buck up and get on with it till she realised she was in liver failure, but in general, she was a loving and supportive mom and an amazing grandmother.

It made me glad that my mother figure (Step mom in law) is far away. She can’t see what I go through. She already feels so desperately worried the few times I mention it that I don’t ask how she is on my worst days because I know she will ask how I am.

Then I realized that though my biological mother wasn’t the best, that I didn’t have any recent heartwarming memories, I DO have those who care about me. Who contact me purely to check on me, not to use me. Those who send messages because they love me, not because they want something from me.

I see it in their actions. In the way they study the various conditions my children have, in how they share videos that remind them of my children, in how they try give (money) because they aren’t here to do (anything for me.)

They are my blessings.

I am thankful for every true hearted query. For every well thought out sentiment. For every, “Oh no, that means you’ll have a terrible day” after I relate something I did that will tax me or have bad consequences.

Like allowing my daughter to sit on my lap for a very long time as she made me read two books to her despite how the enthesitis in my pelvis has been raging.

My husband was saying this morning that he’s got grey hair because of me. In the past, I was sick but it was random issues, random surgeries and we were en route to diagnosis and HEALING. But now, now he knows there’s no cure at all. There’s no healing. And it gets worse… It’s knowing that we are trying treatments. Trying. We don’t even know if this Enbrel is the magic bullet or if we will have to keep trying and failing while the disease keeps on stealing my mobility from me.

It’s scary.

But we have our blessings. And we are thankful for them.

Where Are They?

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AS is like many other incurable diseases, it manifests differently, can be mild, or can be incapacitating. I have tried to find other blogs, but the people are either very well and stronger than I am, or they just..disappear. One had liver problems and other issues that were getting worse and she just..disappeared. One’s blog did have a conclusion- when she died due to her ribs not expanding and her not being able fight off an infection.

We lost an eight AS patient this year.

And I can understand what can go wrong.

I can’t do this particular exercise. Well, there are a few I can’t do. But this one is scary impossible. It’s like there’s a huge weight standing on my shoulders and back pushing my arms down. They are bent and I can’t breathe and I can only stay up for about 6 seconds before running out of air and energy.

I wish I could describe how scary that is. Does that mean my back has fused? Does that mean I’m going to end up with a hunchback and this is just the beginning of my body not going in the direction I am trying to move it to? Or will I have the ‘privilege’ of at least remaining ramrod straight?

I did the shoulder extensions after the failed back stretch, and then tried lunging. I couldn’t. I lost my breath after five steps. That’s two one side, and three on the other leg. And then I could not breathe.

It reminded me of yesterday morning. Before going to church, I recorded a Bible story segment and the nature story for the children to watch in my absence. I went out to pick two flowers, and became breathless. Just.from.picking.two.small.flowers.

Something is very wrong and I don’t know if it’s enough to know I have atelectasis (partially collapsed lungs) that seem to have caused fibrosis in one lung. It seems extreme all of a sudden. Or is it a symptom of the extreme exhaustion that comes with AS? Do your lungs also feel too tired to work?

I really don’t know. It’s just worrying when you see your outside not behaving, and you feel your inside also not behaving. I don’t know where I will be when my blog comes to an end. I am hopeful that it won’t be an abrupt end after noting that my organs are in trouble. I hope against hope that this will all get sorted and that it will improve.

As I plan to go get my kidney function looked at and a colonoscopy done…

Ankylosing Spondylitis is a BEAST

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Wearing masks because I don’t want to catch the virus ALL my children have.

I felt on top of the world yesterday. Granted I had way too many pain tablets to even count, but I felt on top of the world.. once they kicked in.

Today, I am paying for it. I am paying for it and I want to cry. I often had days before diagnosis when I’d tell my husband, “I can’t. I just can’t do this. I wish there was a nursing home that I could go to where I could sleep, be served food and sleep through the night-unlike a hospital where nurses and patients keep you awake at night. I want to be nurtured, mothered, looked after. I can’t do this. The pain and fatigue are too much. I wonder why.”

That’s the kind of day I’m having, I know why, and it’s only just past 8am.

The loud noise of the children’s shouting to each other from different rooms, my teen daughter’s very loud laugh all set my teeth on edge. I want to join in and just SCREAM as loud as I can. Shout that I need a break. But what would that hell except to frighten them? I want to be in a quiet place, resting my weary body.

I shouldn’t have been a hero yesterday. Moving my heavy queen size bed to clean under it, vacuuming and mopping multiple rooms, hanging laundry, bringing laundry in, hanging more laundry, ironing, working out…And daring to print practice exam papers and do dishes. It was too much for the me I am today. The me I will be until we try biologics AND they work.

For it’s still a long process. I don’t even know when I will be approved. I don’t know if we will afford it. And I don’t even know that the first attempt -Enbrel- will work. What I do know is that all my joints are screaming and I know the screaming is so loud that not all the pain meds in the world will bring the volume down to the level it was at yesterday. What I also fount out this morning I s that doing glute bridges hurts too-as well as some of the other AS specific exercises I’m meant to do.

What I do know is that I’m limping and nobody in my world knows how bad today is. And why should they? It’s not like they can come take the load off my painful, weary shoulders. And they know AS is forever. So, I come to my trusty online journal and share what many others are going through with their ailments.

We will survive -somehow. Don’t ask me how, as I hear my twins screaming and crying and want to join them instead of having to be the one to find the strength to sort it out.

Just breathe. The day is not infinite. Somehow we will find a moment of rest even if it’s right at the very end of it. And we will learn from yesterday to never try again to be the us we used to be before disease took over us.

Today, I have AS and AS has me. But it doesn’t change who I am. Weaker, slower, walking unevenly, silently crying but still holding on and being the me my children deserve. So help me God.

What’s Going On??

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Tomorrow I see the surgeon about whatever is going on post op, deep inside. Not the actual wound, but below. Started with a small big pea-sized lump and it’s now a huge area of pain. Well, as big as my hand. Woke me with a huge wallop this morning at 3am and is still aching badly. Literally felt as if something smashed me inside.

I’m scared. I’m scared of the costs of diagnosing the problem, and what will be entailed in fixing it.

I got a call from the rheumatologist’s rooms. The PA said that after long deliberations, I’ll be put on Enbrel. She had said she would send forms, but I haven’t received them. The next step will be to send motivation letter to medical aid.

I’m so scared. I looked up the costs. They are impossible! Google says you’ll inject yourself every week and that depending on the dosage in each injection, I’ll pay between R4300-9000 per jab! That’s weekly! No way I can do that! And my med aid plan is one of those that orders have 100% said didn’t even pay the 80% the more expensive plans pay.

I need this. I’m in so much pain that I can’t even do my AS exercises themselves. And the thought of it progressing without me at least slowing it down… I have my cane. But I want to have the opportunity to feel so well that I don’t have to use it.

When will my body cooperate?

Let’s hope the cause for the pain is diagnosable and fixable. In an affordable manner!

Next up-the red carpet funeral.