Tag: Ankylosing Spondylitis South Africa

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.)

Disease Progression

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There was a day when even modifying my back stretch exercise to a much easier version didn’t work. When it caused too much pain. I thought, “Is this the beginning of the end? Am I headed inexorably to being hunched or fused straight?”

There was a day I couldn’t do my shoulder and back exercises. I gave up in dismay, but hoped it was “just a bad day” and not something more sinister.

There have been DAYS where I have told my husband that I can’t search for my clothing because my shoulders hurt too much and I need to bring my arms down. Days when just hanging laundry tires me out and my arms shout NO. Times when I realised my arms weren’t moving as far as they should during my AS exercise. But I told myself I had begun badly -unable to do that exercise ever- so maybe it was not any worse.

I have mentioned the increasing pain here too many times to count.

And so, it should not have come as a surprise when my rheumatologist tried to move my joints, felt me and things were proven to have gone bad. My shoulders wouldn’t move as much as they could. She felt them protesting. Stiff. My fingers, wrist are swollen. My foot is swollen. My neck… My back… The measurement test she conducted on my back show progression. The phrase “incurable and progressive” doesn’t really show the horror to many non native speakers of English. Nobody ever says, “It gets WORSE? You mean this is the best you’ll be? But this is already bad!!” It’s too benign a description for what it means.

And so, medication change. I get sick too often to get any benefit from Enbrel. Consentyx is a once a month injection that ironically costs way more than Enbrel😔 and medical aid doesn’t even pay half the costs even though we are paying them way more in monthly premiums after moving to their most expensive plan.

I was extremely down yesterday. It’s one thing to feel pain and increasing stiffness. But I thought it was some prolonged flare. I didn’t know it was that bad.

So, we await medical aid approval and for the panel if rheumatologists to convene and agree. In the meantime, I’m not crazy. I really am worse. And will continue at a fast pace given I’m off treatment anyway for surgery.

I loathe all invisible diseases. Nobody can see the fatigue or the pain. My teens didn’t know I was suffering because I never verbalized it and my body language didn’t show it. I need nurturing. But I can’t rest.

I hope for better nights one day. I hope Cosentyx will be the one. After all, my husband said he felt the second biologics were try would be the one, let’s hope!

😝Not that he’s even close to being a prophet!

Now Injection This Week

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

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

And I definitely do not have “no swelling.”

In fact, pain has increased.

Normal finger

Not so normal finger.

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

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

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

I just want a bit of hope. Please 🙏🏾

Better Injection!

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I’m so, so thankful! Last week, I had that horrible reaction not even an hour after injecting myself. I brought the injection day forward so that I’d hopefully be ok by Sabbath – my poor middle two were extremely upset at not going to church.

I don’t get anything. No reaction. No welt. No diarrhea. No excruciating burning pain! Nothing! I don’t know what tomorrow will hold, but I know that today held ME!

AND I had a whole hour of no pain. I could not only tell my middle two what occupational therapy exercises to do for their core, but I joined in with them. My sweet eight year old asked in shock, “MOMMY!! What are you DOING!!??”

Priceless!

Enbrel number 3. Done and dusted. First time injecting into my belly. I’ll be better at it next time.

Stand Up and Be Counted

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There’s seemingly only one group in my country that deals with AS. It’s run by a leader who I’ll liken to Chairman Mao. She’s only nice to you if you belong to her ‘communist’ party, if you’re not a communist like her, too bad, you’re on your own.

Not good.

I posted in an international forum and the only answer I got was basically impossible to do here in Africa.

So, in this Facebook group run by Chairman Mao, people post asking about the cost of Consentyx, Enbrel or whatever biologic they’re going to be put on. Far as I know, biologics are medication, right?

But let’s back up a bit. I joined a WhatsApp group that was for my specific province. I asked a question about my eye- when it turned out I had scleritis. I got maybe two answers max. Only one answer was that I should see a doctor. (I’d asked if I should relax because it’s pink eye, or if it’s one of the eye afflictions we tend to have as AS warriors. I’d never had pink eye before so I didn’t know if my symptoms were it or something else. )I felt so ignored, unseen. It was lonely…Support groups are meant to support you.

The very next week, someone asked the same question. Someone who is closer to being communist than I am. The answers poured in, showing lots of concern and telling her to hurry and go to the doctor quickly “because you can’t mess with your eyes. It can go bad very quickly.”

I should have left. I should have left. But I thought maybe I was seeing an issue where there wasn’t.

I know, that was too optimistic of me.🤦🏾‍♀️

A few weeks later, I shared a photo of myself wearing my AS warrior top. A few people asked where I got it. Given the group is ALLEGEDLY all about spreading awareness, I cheerfully shared the number and name of the person who did the printing.

Chairman Mao responded with a, “Do not use this group for advertising.”

That time, I DID leave. It was her tone, like I’m some naughty child. And it was the fact that they had been going on about spreading awareness and this was a tool for awareness

So, back to the Facebook group. A non communist like me joined the group yesterday. She said she’s on treatment but is struggling with terrible pain at night in specific joints and was asking what to do.

Nobody had answered yet when I saw her her question and responded to it. I told her that despite my being on Trepiline which supposedly also aids you with sleep, my sleep is extremely disturbed by pain so I can relate. I mentioned that I’m waiting to start biologics and asked what treatment she’s on. I ended with sympathy for her struggles.

I never received a response notification so I went back in to see why. She’d sounded pretty desperate after all. And I’d wanted to tell her that the med she’s on takes a while to start having an impact, or to tell her to ask her rheumatologist if there’s another option she can try. I just needed to know so we can hope it would yet take effect, or ask her rheumy for further help. It’s been quite a few months since diagnosis.

I realised why I hadn’t received a response to my comment. Chairman Mao had erased my response.

And she’d written that we must not discuss medication.

Do not discuss medication in a group talking about a disease? Excuse me?

And what??

I posted screenshots of where communists like her had spoken about medication, naming steroid injections, talking about Salazopyrin dosages etc.

My goodness, she’d made her communism so apparent.

And so, I left. I didn’t even wait to see what communist nonsense she’d spew to defend herself. I left.

And yes, by ‘her communism’ I mean her racism. I don’t see any other reason why I’d be ignored by a bunch of non Black people, while non Black people with the same problem get lots of support. Nor do I see why she’d only rap a Black person on the knuckles for something White people had been doing all along with no reprimanding.

And why not just issue her command without erasing my sympathetic comment? Was she wishing she could erase the new member and I too? That was the height of arrogance and rudeness. And lack of respect.

I remember sharing some thoughts from the group and my Black friend asking if it’s rare for Black people to have AS because not a single Black person had said anything.

Maybe Chairman Mao made the group so uncomfortable that many left. I’ll never know.

So here I am. All alone. Dealing with a rare disease and no support group.

Better that than to be belittled by some small woman with a large ego.

And I hope they do take my name off their register as I requested, they don’t represent me after all. If they did, one of them would have spoken up.

But they were all silent.

They are all complicit.

Silence is painful. I hope I speak up for anyone I come across who is being blatantly unfairly treated. I hope I never participate in the erasure of someone, but show them that I see them. I hear them. They matter.