It’s kinda scary. I was bent over forwards trying to sweep up into a dustpan, a mess the twins had made, and one came behind me and pushed me out her way. She’s heavy. I stumbled.
What will happen when she’s older? And bigger? And stronger? Hopefully she will use her words. Or will understand how to behave.🫣
On a happier note. She dislikes the texture of the zinc chewable supplements so I thought her the syrup. She surprised us one day this week by picking up the bottle, going to the kitchen, opening the cutlery drawer, taking out a teaspoon, and wordlessly handing her medication (She did the same with magnesium!) to her big brother to give to her.
Every time she shows some kind of planning and thought, our hearts swell. Remember, we couldn’t even tell how delayed she is both times she was assessed. We know the delay is there. So seeing this makes our day.
It’s the little things.
Like trying to engage with her and not getting any ‘response’ but when hugging her good bye, she looks at me and gives me a gentle kiss. And another when I praised her for it.❤️
And no, there’s NO day with NO word anymore! Thats another thing. The words might not match the situation, she might mostly be looking deep into our eyes before suddenly saying “efunt” (elephant) or lion, but she’s saying lots! And sometimes it totally matches the situation, like when she burst into my room and I was resting and I told her to cuddle with me, “No, No, No.”
Alright. This is for AS patients who are still actively trying to figure out if they’re on the right biologic. Those who are new and not sure of what they’re experiencing is normal, and don’t know if they’re the only ones dealing with random issues.
This is my bit to speak for all the patients who write in groups that the medication is working BUT the side effects are unsustainable. Here’s why it’s hard for ME. This post is for all the people who wonder what actually CAN happen?
So, Enbrel is not going to leave me unmarked -internally. It’s a lot going on and I have not been telling anyone the extent to which it’s impacting me.
Damned if you do, extra damned if you don’t.
Fatigue. AS already is a disease marked with extreme exhaustion. The day after my injection, I suffered a lot but today that aspect is gone.
Just know that some problems you might have had before starting Enbrel (or any other biologic) can spring up worse and more often. I’ve had a problem that began 24 years ago and was bad enough for me to get help many times, but no real answer except to be told it’s going to stay with me forever and will keep flaring up, and to be told only total deep surgical excision would get rid of the problem. (Hint- staphylococcus bacteria is sometimes impossible to get rid of)
Just know that sinusitis can do weird things when you have Enbrel in your system. Like your nose pouring out what might as well be water uncontrollably.
Just know that you can have gastrointestinal problems that also last days. Think the opposite of the IBS I have. (Mine is constilation dominant.)
I don’t know, warriors. They say side effects get worse the more you have it in you. I don’t know what that will look like for me. I don’t know if I’ll settle down instead. I’d like to give this a real chance to work.
Back to the staph issue and what the dermatologist said about deep surgery…It would mean I’d also need reconstructive surgery and skin grafts given how widespread the problem is.🥹 And you have to quit your biologic if you’re due to have surgery. So even if I was contemplating it, stopping AGAIN before Ive found out it if it works is not something I’d do unless it’s a matter of life and death or permanent disability. We need to know if this is even the right treatment.
It’s one thing to be told, “I had to try so many meds before I could find one that didn’t impact me” to actually live it. How bad is bad enough to try something else? And now I can understand the patient whose rheumy changed her meds because of her side effects, a change which which made her upset as she felt the biologic was helping the AS so would have preferred to weather the side effect stork and control the Azs. Uncontrolled AS is awful. Worse (for us) than the side effects sometimes. But the side effects can kill. And maybe the rheumy knew what was ahead…
And so… we walk on blindly. Nobody who has lived our specifics, nobody we tell our specifics to. Just hoping for a break.
That’s AS reality when your disease is not yet under control and you’re still new to a biologic.
On the positive side, my skin hasn’t reacted to the injection. No site reactions. Some people have to quit because of them as they spread and become thick, permanent and get painful and… So though I almost forgot to add it in, it’s important to note. At least that’s not a possibility I’m dealing with.
Monday was a happy day. And the twins certainly enjoyed their fourth birthday.
But of course, those who live in the valley can’t help but think of said valley. I didn’t know I had AS when they (and my other two) were conceived. I have heard NOW that patients are told to first have their AS under control, and THEN fall pregnant as AS seems to be dangerous for the unborn babies.
Oops.
Also, research has shown that AS patients have a flare up in their second trimester. That is ME! I always had horrible morning sickness till week 16. Then two weeks where I bloomed and blossomed and felt happy. No more threatened miscarriages that always happened in the first trimester, no more sickness all day. Then week 18 would come, and like clockwork, all hell would break loose. And I didn’t know why. I’d have to take breaks when shopping because the pain was horrendous. My rib cage felt like it was breaking. I feared I’d never be able to walk again. I wasn’t able to exercise- leading to insensitive women complaining about how fat I became instead of celebrating the healthy babies. Pregnancy was torture.
We had a lovely birthday Monday.
But today is Thursday. And today, I had to go repeat my kidney function bloods. I had a moment in the shower. I was (am) feeling much more fatigue than normal- I assume it’s the effects of yesterday’s Injection number five. I had to drag myself into the shower and I just wept. I didn’t “WANT to go get my bloods done. I don’t want to have to wonder how gentle or rough the person will be. I don’t WANT to keep doing this. It’s been 43 years of being chronically ill. I’m tired…”
But I went anyway.
And a very talkative gentleman came and sat next to me. He started by talking about how full it is for so early in the morning. He told me how he’s TIRED of being pricked all the time. He knew he’d never be cured, so why not just let him die? He didn’t want to be there to be pricked often and he’s lived a full life at 80 years old. Boy could I relate to him.
David, Isaiah, Jeremiah, many lamented the state of things. The church, their lives… Their heads were bowed with sorrow and their eyes were heavy with tears. Lamenting is nothing new, and nothing God can’t handle.
And, like those Bible warriors, we keep going anyway. Tired but aiming for triumph. Sad, but accepting. Wishing for better, while appreciating the good. He has lovely children, he has delightful grandchildren… His life has something worth celebrating.
Thank you to my faithful commenter who celebrates and laments with me. We are in this world, we sadly can’t have one without the other, right? But, we soldier on.
Smiling and hiding it. Like all good mothers and grandfathers.❤️
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…
I came‘this close’ to crying in front of a plumber just now.
AS is a disease of pain. But you get flares where it’s like the whole world’s pain descends on you. That’s today. After a hellish night where it felt like I sweated all night and was therefore made cold when my nightie cooled down, only to get hot and sweaty again, I woke up to a morning of hell.
I do think the NSAID is helping. My elbow and peripheral joints haven’t been as bad. THEY haven’t kept me awake. But good lord, my hips and SI joints are screaming and yelling and screeching in pain. I ended up sending the behavioural optometrist a run down of things my poor angels are struggling with and how I’m therefore breaking their exercises down into smaller steps, and telling her how the exercises are hard on ME too. I can’t bend over and push and pull. It hurts. Kneeling to push and pull (a variation that has to be done on tiles to make them slide up and down) also is a killer. I explained that I have AS and it’s currently not under control. (To put it mildly.)
I gave the children their school work and went to my room and while asking a friend about their sibling, couldn’t take it anymore and wept, asking her to pray right at that moment. It’s not only the bone pain, but something the gynae did to me in order to test something. It’s a cluster duck (heh heh) of pain.
So, the plumber wanted to see me just as I was at my worst point, where I was in so much pain that I couldn’t hide it. So I hobbled off the bed, wiping tears away and hoped I could manage. He could obviously see the pain as he apologised for asking for me.
What about my “funny baby?”
We have a plan. When she doesn’t see me, Twin B is fine. She keeps herself busy and does her own thing. But if she thinks to come open my door or sees me, then it’s game over. I can’t finish my ironing or sweeping or whatever it is I’m doing in peace. She will grab my hand and take me to my closet and want me to pull things down for her. Some of which are markers that she will carry around after removing their lids. Yes, you can imagine the mess. So I try avoid that.
This time, she spotted a box their combined birthday gifts came in, and wanted it. So for the sake of peace, I brought it down. She removed some bath soap that was given, and because of the shape, thought it was toothpaste. She took me back to the kitchen and wanted me to bring her toothbrush down. (That’s how I knew she thought it was toothpaste.)
I took her back to my room, with her protesting all the way. I told her we’d wash her hands. She shouted in anger, “Wash!” And cried even more. But I took her anyway.
I picked her up and sat her on the side of the sink as she cried, turned on the tap, put the soap on her hand and boom, tears all gone! She was so happy! Totally in her element. I ended up having to put the hand towel over her lap as she was now wetting her skirt and leggings. Then she started splashing her face and ‘washing’ it. It was too cute! So much for those initial tears!❤️She also tried to drink the water by sucking at her fingers.
Eventually, we were both done and both happy. And she stayed happy for the next hour❤️
I was born a Seventh-Day Adventist. I will die one. What that looks like on paper, I don’t know. Outside people used to say we are a cult following a deluded lady called Ellen White. Not at all. Everybody is just living how they want and Ellen White, who gave us the name SDA-is a thing of the past, according to some hard hitting stats that came out last week.
See, I love my church. But I don’t love what we are doing. We USED to be like a cult in that we all used to be modest or get into trouble if we weren’t. But now we are all just doing what want, dressing how we want, eating what we want, and definitely not following Ellen’s writings. We once were banned from watching anything untrue,how that’s all we ever do. Well, you could choose to fill your time with fiction, but with that choice,came the choice to no longer be an Adventist. Now those who don’t read or watch fiction are the outliers. Those who read the Bible and EGW writings are a dying breed. And of course, just because someone is reading doesn’t mean they take to heart what they’ve read.
This church will never again be viewed as a cult. Which is sad, for Christ was one of the greatest Sabbath-keeping cult leaders ever. I wanted to be known for being different and rebellious with my fellow cult members. I wanted us to be one, as Christ prayed. I want us to share everything like the disciples did. To help those who need help and be united with one goal-purity.
All I can do is press together with those who love the Word and love God and love His people. One day, we will indeed all be dressed alike in our white robes and crowns. The best ‘cult’ ever.
That’s what I have. My rheumatologist’s office manager told me yesterday evening… AFTER my husband got in from work, said something that made me laugh which made me cough and he had told me, “Oh stay away from me and don’t kiss me! You’ve got Covid!”🫣
Her prescription that included ‘rest’ doesn’t work when you have four children whose brains are all basically operating at age 3 or under and have impulsivities included and teenagers who have gone to write exams.
My husband is working from home. Which means that I have to watch them even more. Like the time earlier on this morning when the twins ran after me when I wanted to wet their face cloths. I turned around and there was only twin behind me, the other was standing slap bang next to her dad and making the meeting come to a screeching halt as I heard the dad explain who she was.🤣
She eventually came back to me but then when I went out as fast as I could, none followed me! One rolled around behind her dad and the other went right back to join the meeting.
After an angry yell by one, the other one came out beaming, a beautiful smile on her face as she told me proudly, “Mommy! I was talking with the aunties and the uncles and daddy!”
Someone asked my husband if my teens have started AS levels yet given he had just recently told the person their IGCSE marks from June this year.
The answer?
“They’re writing two AS level subjects next month!” (That was last month!)
Yep, we dove straight into AS levels after only a two week break after exams. I’d wanted a six week holiday but by day mine, my son was already secretly studying. We began all four subjects but they quickly realised that to wait a year to write all four would be pointless for them as they were almost done with English and Geography.
So with great trepidation, I registered for exams before they were even done studying.
But they’re done. I am scared. A mom wrote how her daughter had been getting all As for IGCSE and past papers of AS levels but tanked big time. Only getting D’s in the exams.
I haven’t told my teens that. But I have told them not to be complacent.
We wish results didn’t take so long to come out! Tomorrow is it. The beginning of the end of my homeschool career with my oldest children.
I don’t know where we will go with my middle two. And my one twin-we’reooming at an autism centre with a waiting list so there’s no guarantee for next year… She is signing maybe once a week, but using signs that don’t match what she’s saying verbally.🤣❤️So my only hope and prayer is that we find a method of communication that meets her needs. That will be my goal for her ‘education.’ Next year will be therapy for all, that, I’m sure of.
I think one twin is going to be able do traditional home education. But it still feels like the beginning of the end. Plus, she IS only three years old. So I don’t know what will come in the future. I hope it’s My Father. But if not..let’s see!
Slowly, the time is coming when I’ll only have four children in my care…And for my teens’ sake, I hope it is soon. Cos that will mean they didn’t fail. 🙏🏾
And typical teen, my girl is excited that her brother will be taking them to go write. Though she did read to me that when it’s only teens in a car, the risk of accident goes up by 400%!🤦🏾♀️🫣
Yes, I’m grateful each time they get gone without mishap, like when they took three siblings with them to church this Sabbath.
Christ was a very serious man. Constantly being harassed by his family, the church leaders, people reminding Him that he was “illegitimate…” Mocked for not attending school…
Surrounded by suffering. Healing the many who came while unable to touch them ALL. And kept awake at night by seekers like Nicodemus or woken up on boats that would never sink while He was on them, trying to rest.
He never rested. Was always seeing the weak, the sad, the heartbroken and the stumbling. Always in a fight either with demons or priests. Almost killed- taken to the top of a hill, and eventually, tortured to death.
His life was lived with imperfect people when He came from perfection. Talk about draining and heartbreaking daily. It’s like me going to walk in a trash heap for 30 plus years! Sitting with people whose odour is foreign to me who spent all my life in a garden of fragrant flowers.
We can’t imagine the order and peace and joy He left to come to our disordered world.
The Bible is littered with heartbreak and injustice. All the things that make us long for a better place. From the fall of man and the first death, in Genesis to the time when the beast will force people to worship him or die, written by a blinded prisoner on a lonely isle. But I love it. I read it and wish I had more time to read more.
Today was surreal. Truly surreal. Only those with true chronic illness and children with special needs will understand how every hour comes with reminders of how bad things are. Yes, we have air. Yes, I have a home. But if you ask me how I am, it would not be me to tell you, “I’m great!” Cos it’s not true. But someone ranted at me that that’s exactly what they want from me.
A sanitized version of my history, and a fake version of my present. I’m not allowed to mention that as I’m typing, my SI joints are miserable, only that I’m glad I can type. I can’t tell you that just vacuumed my room but needed to ask the teens to finish off due to pain and fatigue, only that I vacuumed part of my room.
I’m not a Pollyanna Christian. I’m real. I want to show people that you can love God IN the valley. Not pretend I’m on the mountain peak-that would be lying by omission.
There are great days. Or rather, there are days when I slept for five hours with no insomnia. Yes, aided by medication. But they are there. They’re just followed by children who hide used diapers in wardrobes and skip lines when I’m teaching them to read. I have to remember my medication, and the medication of four other angels.
I will tell it all, or tell nothing at all. I know my Saviour is seeing it all and strengthening me through it all. If HE can bear it, so can all those who bear His name, just like I could bear everything others came to me week about-mothers who insulted their mouths, saying they look like pigs’ anus- I can bear it. Tell me you were assaulted -I can bear it. Tell me your aunt tried to kill you with an axe at your only mother figure’s funeral, I will be shocked and hurt with you. I can do it. And when I’m awake at night, I have more to pray for so I can focus on you not on why I’m awake.
“Bear ye one another’s burdens…”
“I can do all things through Christ Who strengtheneth me.“
I can bear the victory. But I can also bear the war that came before, and the war you will fight till we “study war no more.”
I hope one day, this old acquaintance finds that it’s in being hopeful while in hellish circumstances that purifies us and forms us into His image-the One Who bore our disgusting sins without flinching, living knowing He came only to die, till he breathed His last for us.
Pollyanna Grace will come when we live in heaven. Because there, everything-my present and my recent history after a day or two- WILL be perfect. And I want to experience THAT!🙏🏾
There’s been a loud cry for a while now about how there are too few rheumatologists not only in my country, but everywhere. And some places, there are none at all.
It’s bad when you need to start treatment but have to wait months or years. And that’s before knowing what you have. By the time you see one, your undiagnosed lupus might have killed you as what happened with a relative. And as much as I love GP, they aren’t specialists. My GP didn’t even know what Enbrel was so didn’t get the significance of my having to tell her why I’m being extra cautious when I got sick last week. She had to open her medication textbook to look for it. And had to ask me how to spell it.
Meanwhile, when I ask for an appointment for my son, I don’t get anywhere. No commitment, no response.
Too many patients. Too busy. And we fall through the cracks.
I saw my newest rheumatologist on September 22. She said she’d send me a link to the Back to Action AS exercises done by NASS. I’m glad she was so specific because she made it easy for me to find them myself when nothing was sent to me.
She said she would send a gastroenterologist she works with my referral so they can do a baseline colonoscopy as Enbrel isn’t kind to the bowel.
With my finances in a dire strait, and my not knowing if med aid will pay, I will book one myself for January.
Slipping through the cracks.
What if Enbrel DOES do something to my bowel? But also, I don’t have the funds… And again, remember the gastroenterologist who refused me a colonoscopy when I asked for one??? This year way before Enbrel came onto the scene? THAT would have been a perfect baseline scope.
Readers… It’s lonely. I don’t have friends (good for them!) with AS. Plus it’s so different for each patient that I’d need maybe five of them in order to get answers to some of my questions. And they’d all need to be on Enbrel. Tall order!
I don’t know. I blog when my heart is heavy these days. And it’s been heavy a lot lately. I’m sorry. Truly sorry. Even vision therapy is more heartache than happy at the moment. Early days yet, we only started last week. We’re working on getting rid of primitive reflexes. But it’s needing way more motor planning than my poor children can do. And I feel sad for them. My teens watched me trying to help one to CRAWL …CRAWL and they exclaimed, “ Wow. It seems it takes a lot of concentration and effort to do this.”
There’s a lot that makes my heart heavy. Will we manage to stay on schedule? I don’t know! Especially not with my painful body. I honestly can’t. It’s very physical and your body has to bend down low. If I couldn’t even do more than a half a meter of weeding in the garden…
Let me change topic.
Maybe not.
Sometimes, life is about gritting your teeth and faking it. There are times when you really can’t see the silver lining because the darkness is really that dark that it swallows the light.
Intellectually, I know they are there. I know it! But engulfed in pain, not knowing when I’ll start trying to fight this insidious disease, with my children’s exercises showing me how bad my bones are besides the NASS mobility exercises themselves that I can’t do, it’s really hard to appreciate the good because the bad is constantly there. There’s no break.
And I want this virus or whatever it is to just go so my head and chest feel better and I re start treatment.
All one can do from the outside looking in is bear witness. And I’m grateful to those who try and shoulder a burden even I can’t shoulder despite it belonging to me and me alone.
Yes, I am a Christian. But even Jesus had friends. He didn’t live in a vacuum. We all need some love and support and closeness. And that’s something many can relate to whether dealing with poverty, unemployment, special needs or whatever the most PC term is overseas, or chronic illness.
Let’s keep gritting our teeth. We’ll either die one day, or God will come. Either way, it WILL end.
They said I should write a book 