I’m officially done. We read of Hezekiah crying and wailing, upset that God has told him to set his things in order as he’s going to die. His tears move God and the sun goes backwards.
Nope. Not for me. The pain is unbearable. I’m tired of being woken by it. I’m tired of being sad over my children’s struggles. Struggles I can’t help. I can’t anymore. My lungs seem worse, I’m more breathless with exertion But maybe all would be? Maybe I’m imagining a decline. I just know that carrying loaves of bread to the car made me breathe hard. Maybe it’s because it was raining so I walked too fast??
I revelled in the jumping happiness when my girl received her Temu Pharaoh hat. I tried to ignore how inept my almost ten year old was when we made these below for a “ladybug party” suggested in her Preschool book. It was physically and emotionally draining, dealing with three children of very different ages but all as clueless as the four year old. Nothing helped-not showing, demonstrating, slowing down… I regretted doing such a simple activity as it took a lot out of me physically and emotionally. If they can’t copy and follow along with big objects, how will they read well? Lots of adjusting to put the blueberry head where it should be, and the wings how they should be.
I suspect Cosentyx has caused abdominal problems.
I tried so hard to find positives even though the disease is progressing and making it hard to do my children’s hair and to cook- my arms this time, not only the back. AS stinks.
And then..no sleep! Both girls are awake! Both twins! Help!🤣🤣It’s 3:44am, been up since 1:47am. Bedding and pyjama changes as they weed and pooped through!
My life is crazy. My husband was telling me about a colleague whose sons have now left home and how he and his wife sometimes have no clue what to do with themselves. He said I too would be so lonely and bereft.
Not really! I always enjoyed my own company and I’d finally read books for myself, not on therapy! But, I’ll never have an empty nest. I’ll always be supervising and making sure this child doesn’t hurt that child and finding things for them to fill each day. 😩
I have seen some adult day cares for people like my children. Maybe in my 70’s I’ll get a chance to breathe during the day on week days. It’s my only hope for a break from the relentless supervision, breaking up arguments and keeping the other safe from the other and lack of mental and physical rest. We’ve looked even in other provinces for centres but they only help children with moderate special needs, not severe like my non verbal angel.
Someone sent a happy birthday message and I thanked them. Then I reminisced on how my father had great genes because many of that part of their family are just not aging. My niece still looks like she did 30 years ago! I hoped they all had a long life, “though I’m becoming crippled.“
The reply was to tell me to just be “happy and grateful “ as my birthday is a day of happiness.
Yeah, easy for others to pretend I’m not suffering. Especially when they’ve never actually tried to understand what active Ankylosing spondylitis does. I am still in touch with the Cosentyx nurse, I have some side effects that I’m not sure the cause of- yesterday I had debilitating diarrhea. Is it the sulphasalzine or is it the Cosentyx? Both cause tummy issues and I had gone back onto the sulphasalzine/Salazopyrin because of how relentless the suffering is- but not back at full dose- only half- because that vertigo really frightened me.
This is a card made by my nine year old. She was up at 2am which incidentally, was when her noisy younger twin sister was also up. I am too scared to hurt her by asking what she was trying to write, but I do see the part about my being sick.
My girl looking at me… I tried to tighten her locs yesterday. I was seated. But just moving my arm hurt. It was like my shoulder and back were burning. I’ve never had that struggle before, reader! Ever! I ended up not doing even ten!
And speaking of locs, her twin sister went through a time when she pulled her hair when angry and some are extremely loose (my girl’s hair is very thick but very soft. It’s almost like older baby hair texture, it has never become kinky like ours. And so it gets out of the locs very easily even though she has had locs for long enough for the hair to have fully loc’d. So now she has bits flying around, she herself plays with her hair and breaks some locs
And in my mind, is aggression and violence. Her little sister still gets angry and violent. And my other non talking twin is the same. If you dare say the word “sorry” to someone, not even to her, she lashes out. She did so yesterday while I was doing my girl’s hair. I told her I couldn’t do much because of pain. She said, “Sorry, mommy” and whack, suddenly the other twin smacked her or tried to scratch her face, it was so fast I couldn’t tell. But the victim was calm. “What happened? Why did she do that?” I told her she’d said sorry.
This should not be my life. I should not be falling asleep on my feet. I should be able to do my children’s hair. I should not be worrying about violent children. Nor should I be worrying about my nine year old who seems to be having auditory and visual hallucinations. Voices telling her to do stuff, and seeing my deceased father doing stuff. The voice one happened while she was awake. I’m hoping she just had a lucid dream when she saw my father entering our bathroom and carving into the wall in blue that he died when this child was that age, this one this age…
I should not be in extreme pain and increasing disability..
More importantly, I should not be dealing with people who want to act as if my life is perfect. I had a typical, normal day yesterday. I can’t escape. Birthday or not, special needs are there, I have to teach, I have to mother.
And I have to accept hard things. Like how my non talking twin is not interested in learning or engaging. She has specific portions of the learning app, Starfall, that she wants to do. You are meant to count the number of items in a container and then pick the correct number of three choices given. She just wants to pick. If it’s wrong, she goes to the next choice. She isn’t interested in my counting the items first, instead, she pushes me out as is her norm- Well, yesterday she asked me for cereal before pushing me out her room.
I felt helpless and sad. She is just too busy to take much in. She repeats oft repeated phrases in educational videos but I don’t know how much she understands from it. I just know that true happiness, is impossible. For me to pretend my day is stress-free because it’s my birthday is impossible.
So, today is one of the days that was only meant to bring me two pupils in my little homeschool. But my nine year old, Ammy, called her little sister so now I had three children at three different levels doing three different lessons- all at once.
Because they can’t read, or, the reader becomes distracted and then forgets what she has read, and loses her place and then forgets what the words conveyed to her, I have to sit and discuss with each of them while the others wait. Usually, I tell the older two what to do and then I call the younger sibling so they can work while I teach her. Not today. Today it was mild chaos.😉
My nine year old’s lesson included learning the difference between is and are. So, I said to her, “Ok, look at the children here at this table. Count them… Must I say, ‘How many children is at the table? Or must I say, ‘How many children are at the table?’”
They all agreed that the correct word is “are.” And then my littlest girl added, “Three children! Ammy, Mickey,” and then pointing at herself, “and Pharaoh!”
I had to ask her again. She’s so proud of herself!
Yes, she’s only got stockings on her lower half. She was meant to be having quiet time in bed! But she and her conspirator older sister brought her out in stockings and a T-shirt.
I don’t know how many months this phase will go on for. I know my teens are embarrassed when out in public with her. I’m relaxed- as long as she isn’t hurting anybody, and doesn’t cause any problems for anybody, I’m ok with her hyper fixation. It could be worse.
I never chose this club though with adoption of a preemie, adoption of a child with no prenatal history and the host of problems I had during pregnancy culminating with an emergency c-section when the twins stopped growing and e found they’d received no sustenance from their broken down placentas and our non talking angel with meconium, it was a possibility.
But I didn’t choose it. It chose me. I didn’t even know about it, never saw it in anybody’s life. So I’m living it alone. I guess same with AS. Living it alone.
So, to make sure it’s just typical autism sleep issues and not pain, I’ve emailed the pediatrician fora check up (though she hates being touched) and am looking around for dentists who can painlessly sedate my angel. She definitely needs a thorough cleaning as she bites the brush and doesn’t open her mouth when we brush her teeth. She needs a clean, and she needs to be checked for cavities. This is so complicated, readers! And I’m lying in absolute agony too. How will I do all this? Will medical aid pay for the anesthetist? How soon can it be done? How painless will it be? I don’t want to ever witness my child rolled in a blanket, screaming, looking to me for help while medical staff prick and pick and sweat and prick all over and find no vein and thank me for telling them to just STOP. Even writing it makes me cry. That’s a memory my son doesn’t have in HIS mind but will never be erased from mine. It needs to be sick and easy for both of us. (We ended up sedating him and going to theatre where the needle was put in a vein in his neck.)
I pray for a miracle but none comes. Everything is getting harder. I need a break. I truly can’t do this. I feel like my brain is going to snap. I feel like I’ll have some kind of weird stroke and my brain will literally explode. I’ve said that for a while and it hasn’t happened. I guess that’s a good thing?
The days are long and the nights longer. How can this be? Isn’t dealing with pain day and night bad enough? Why now when my days are becoming more difficult physically? Truth is, no time would be better. No parent would voluntarily sign up to stay awake from 1am, no napping. Nobody would.
So, it’s time to find out if there’s a cause we can treat.
I need a diagnosis AND a cure for something! There’s none for AS, for autism, ADHD, GDD, intellectual impairment. Please let there be one for the sleep problem.
They all say that biologics don’t reverse damage already sustained, don’t improve the level of disability already existing. And, they will work after some months to slow the disease down- if at all.
I don’t know whether to laugh or cry! So, what does this actually mean for people who are constantly and quite speedily getting worse and will presumably continue getting worse while in treatment UNTIL the meds have built up in the system?
Will I be same to have a run of four months(one injection per month) without needing to take a break this time? Will I be she to fully know if this new holistic, Cosentyx, is the one? Or will I suffer too often, and too many “adverse effects” like I did on Enbrel, so we never find out?
I don’t know! I can live in hope though? And so it was with hope and an emptier pocket than ever, that I collected my first Cosentyx injection on Friday evening. I -still- had not received a phone call from the Cosentyx nurse on how to inject so I learnt from YouTube via Consentyx itself.
And I did it. And it was so easy! I don’t have to aim, I don’t have to make sure I inject fast enough to pierce the skin. Sometimes, I’d be too gentle and it would meet resistance and the needle not go deep so I would have to start again. With this one, you take the lid off, put the instrument (auto injector) against your thigh or tummy, press down enough for the sensor in the injector to feel that you are pressing down then the needle clicks and jabs you. You watch the medicine go down into you and when complete, it clicks again. You wait a bit and then remove the needle from out of you. Simple!
I hope it works. I can’t walk at a normal pace, I can’t walk without pain in my leg at the top where it is at buttock level and my right leg gives way or I limp along stiffly or walk stiffly. Also, the very AS exercises I’m meant to do to help slow this down are – some of them- too painful to do and also impossible.
This is the first her or highest I can go with the back stretch now. And this hurts my back now. Who would ever imagine that this position would cause incredible pain?
Doing THIS, raising my legs feet..awful! I feel a pull from the front of my hip going all the way to my knees and it HURTS! I can’t do the below position anymore.
I’m praying for a miracle and preparing for the worst. We have realised that next year when our teens are at university, I’m going to need two helpers. One to clean, and the other to keep the chaos down for me- to dress, change diapers, to swop… This Sunday, the teens had to go write their NBT- National benchmark tests. Many universities want the students to have passed them on top of getting qualifying final year marks before deciding whether to make an offer or not. The nursing faculty at the University of Pretoria wants them and other info before choosing their nursing students. Whereas they already offered the teens places in their other choices. They weren’t here. It was me and my husband and four crazy kids!
Oh.my.word! It was then that it stood out how disordering my children’s specific learning disorders are! With ADHD that comes with dysgraphia, dyscalculia and dyslexia, the mind itself can’t really understand verbal instructions. I knew it had an impact on our school work, but it makes EVERYTHING more difficult. Hands are clumsy, planning is poor. We had hoped our nine year old would help dress our talkative twin while dad handled our heavier twin who still needs diapers. NOPE! My girl couldn’t even help her sister get her stockings on. When it was time for a walk, she put the left boot on her little sister’s right foot! I had to therefore bend down a lot and by 8:45 when I got back from a walk, I was done. Excruciating pain! Miserable. Absolutely miserable and tired.
And it was a walk with drama. Our minimally speaking angel didn’t want to walk. She wanted to go to the flooded and wet park. But she needs exercise anyway, even if it hasn’t been all wet! And her twin wanted to walk to go splash in puddles. (We’ve had tons of rain.) Nobody else wanted the park either. She screamed and screamed and starting jumping backwards like she will fall backwards, I elected to stay home with her but her talkative twin didn’t want to walk with daddy, she wanted Mommy. So I took them to the puddles, some so deep she shouted, “Help! I’m drowning!”🤣
I definitely can’t ever survive the physical aspects of taking care of my children. And we can’t expect any help from our older children.
So…Next year, we will be seeking a nanny who can drive so she can take them to therapy and has energy and love for special kiddies who need loads of love.
The Cosentyx nurse and general admin around Cosentyx is very different to Enbrel! I did speak to the Enbrel nurse, and I did hear from the Cosentyx nurse today, but that’s where the similarity ends apart from how they both sound kind.
The Cosentyx nurse sent an official video on how to use the auto injector. She also sent a pamphlet about what side effects to look for and when to go to hospital, with the obligatory, “some patients have died from taking this medicine” warning.
She wants me to take photos of the injector after use, and also a photo of the batch number. She will phone to find out how I feel, and then every month she will check on me.
Very different to the Enbrel experience. I just got on with it. Then again, it was less admin- no batch numbers needed. But, I don’t mind!
……….
Oh my word! Today was killer! My eldest wasn’t well so it was mom on duty for more children than normal. Like Sunday, if you read yesterday’s post! We already had our minimally speaking angel up from 2am. And then dressing and all that took a lot out of me as expected.
But the afternoon was the craziest! The bath and kitchen had no hot water. No, I didn’t think to check the DV board- the geyser switch had tripped but I didn’t know.🤦🏾♀️So, the bath the twins usually use didn’t have hot water. I ran their water in my bath, took their bubble bath and face cloths to my bedroom and then …It came to a screeching halt. Well, not for my talkative twin who enjoyed the novelty. But for my non talkative twin. She refused! She cried, screamed, threatened to hurt herself. And she was already undressed! She’s bathed in our bath before (Ok, it WAS years ago, but still!) but nope, not today. So I walked up and down from our bathroom to the normal bath with dishes of hot water. I wanted to cry! My back was not happy with me at all!
And then..she refused to come out the bath. She only wanted her brother to get her out. Can you see how troublesome next year is going to be?? What are we going to do? I guess she will have to adjust. For now, I called her brother out of his bedroom to lift her out and get her into the room.
All’s well that ends well…
Let’s hope that unlike the windy and lashing rain nights, mingled with crazy thunder boom since Saturday, we get less noise from the elements, and more sleep. Less wakefulness from the twins, more rest. Less wakeful pain, more peace.
So, from birth, the twins didn’t sleep. We finally got some medication help for each around the time they turned three. (Prescription anti psychotic that happens to help with sleep for my diagnosed angel, and a natural one for her twin sister.) This year they turn five. We had a good year and a half but things have come off the rails this year.
I had bad nights since I was five years old. Leg pain made me stay up in utter agony which lasted till I was a teen and then became full blown arthritis, and abdominal pain some doctor claimed was Crohn’s disease after a colonoscopy at age seven.
Then IBS insomnia and stomach pain hit from my 20’s on till I found the FODMAP diet in my 30’s. I always woke up at 3am on the dot and couldn’t sleep thereafter.
So, I’d had decades of not sleeping properly.
Then we get to what we now know is AS pain.
That started being a night time terror at age 40. I’d wake up at 4am- not too bad. But I was also very tired now. It’s been too long, I suppose! From 2022, it was any time- I’d wake up any time and struggle and toss and turn and pray to die and then fall asleep as soon as I’d done my Bible study at 4:30am. Wake up at 6am.
Now we come to 2024. My girl who doesn’t talk much is very loud. She will wake you up when she’s up. Not crying, just loud noises. Shouting noises. And her bladder is producing a LOT of urine because she’s asking for a LOT of juice. She has been peeing through her diaper but had been staying asleep while very wet till last month. Last month, she started waking twice a week from 3am and staying up. We changed her meds because of the weight gain and hoped Abilify would be better. But it doesn’t help her sleep like the risperdal did! She’s not sleeping through the wet pyjamas at all anymore.
At the same time, my AS started KEEPING me up and not allowing me to sleep till 11pn or later. Twice, I stayed up all night because of pain. And all day. I increased my night time trepiline pill that also adds to your sleep. But you can’t sleep when your child wakes up and stays loudly up from 2am even with help from Big Pharma. And yes, I did try natural meds first for my sleep but the nightmares caused by pain are too real in valerian root and this other herb I tried. Way too real and too long. I always screamed and woke my husband up too!
Which brings us to tonight. I slept at 1am due to pain. I woke at 2am. My dear loud, wet pyjama angel ALSO has a cold. Very blocked nose. There is no way she will sleep.
And I’ve made up my mind. Abilify is not for us, not now. Not until I can try a larger dose of melatonin and get it via syrup instead of hard tablet. I am hoping very hard that once this stupid cold passes, she sleeps through the wet diapers more with the risperdal, like she HAD been. Oh. And because of the weight gain, she’s too large for the largest diapers for her age and too young for the teen sized diapers which are too wide at pelvis so force her legs open.
I don’t know the solution to all these problems. We have tried to reduce the amount she drinks when she asks for juice. And she doesn’t drink after 4pm!! Surely she should have peed it all out? And nope, potty training won’t work. She doesn’t get the concept and wants OFF as soon as possible.
And now? When I’m up at 2am, the pain is screaming.
What a mess. Ankylosing spondylitis, autism, all day, almost all night lack of sleep.
I wish I had my girl’s energy. Nothing will keep her down during the day! She acts as if she has had ten hours sleep!
Help!
And then we have men. Men truly act as if they have the mythical man flu! (Man flu is the belief that men complain way more about symptoms of the flu that are less extreme than those of women. Ie. They act as if they are about to die when they’re really just dealing with sniffles. ) I believe in general, it’s really that men are oblivious to how heavy women’s burdens are. They don’t put themselves in women’s shoes and don’t really listen when women express their level of sickness and so act as if what they are going through is the worst thing ever. When their women had just experienced, or still are going through- something worse. And they can be so oblivious! They hear but they aren’t listening. 🙈My oldest brother has a terrible cold. I heard it when we spoke over the phone on Monday. Then Monday evening, my husband went to meet him at my dad’s house to choose stuff we want and get the books my dad bequeathed to me. He was there with them for hours. I didn’t go because my pain is unmanageable.
Yesterday evening, he comes back from work with signs of a cold. His reasoning, “It must be the lack of sleep. My body is extremely run down.” And I thought, “Because for two weeks you’ve woken at 2am, your body is so run down it creates a cold… After decades of less sleep than that, I’d have the mother of all colds- perpetually! Can’t you see me and what I’m hoping through?” It’s very likely from my brother, who sounded awful yesterday. Really scary bad. The cough… The blocked nose…The joys of an invisible disease. It is easy to forget it exists. And who would speak up about something they’re enduring every single day, all day? You don’t wake up and say to your spouse, “Well, again, I’ve had only two hours of sleep.” Invisible disease-so easy to forget when you’re not the one going through it.
Oblivious. Men are some times so wrapped up in their lives they are oblivious. The same man who will exclaim over how you ran for your pain pills as soon as he woke up will forget that very fact- that the pain is extreme sooner than ever. Our diseases leave us more than ‘run down,’ and for a very long time. We’d have pneumonia and be on life support if our bodies were to manifest the lack of sleep.
I really wish AS had red lights that flashed and sirens that screamed when the pain was unbearable. Then people would get it and when we tell them we have hardly slept, they’d remember it because of those red lights flashing and the sirens screaming and keeping them up too 😉I’m not too mean though, I’d allow them to escape the noise…But at least they’d know how long and often it is that we smile and talk through intense agony. (Though yesterday by 7pm I was seriously suffering and wanting to cry, visibly limping and dragging myself, not even completing my AS stretches. No smile from 7pm.) Then they’d understand how two weeks of waking at 2am or 3am to go change a diaper, is kinda not as bad as what the person they are complaining to endures. 😉
Wish I could do that for the people who know I’m unwell and never will be cured but blithely text, “Hi! Hope you’re having a wonderful day..” and end our conversation with, “Have a lovely day, enjoy it!” That is impossible. I can’t ever have a wonderful day. Even on biologics. It would be a miracle day! I can’t enjoy a life of constant suffering and not being able to do even more things every day, having more things stripped from me. But I CAN survive. I CAN keep my temper and stay gentle with my family even when there’s a fierce storm inside me. And that’s what I’ll have to do with the lack of sleep too. Survive and smile. Survive and smile.
I don’t know how soon, but soon, I’ll be getting my biologic! I have sent my prescription to the pharmacy via the app, and have applied for help with funding through an organization my rheumatologist’s office told me about.
I had actually seen the name in the Facebook group I left, but I figured that because my second rheumy didn’t tell me, it meant it wasn’t relevant to me! And so, I had to pay full price. This current rheumy’s nurse asked if I’d received help from the organization. Nope! So this time, I’ve filled in a form to apply for help. Now I wait.
I’m also a bit .. I don’t know. There are people who don’t get nuances well and they’ve discouraged me from being candid and open. Not their fault, but their reactions usually don’t match my reality. They’ll rejoice big time that I was approved. Meanwhile approval is just a step in a process of finding out if the biologic will make a difference. If is a very big word.
And if it does, it will only start making that difference around the 16 week mark. Four whole months of getting worse before hopefully stalling the process, or, slowing it down. And that was made extremely clear in a way it hadn’t been before. I have active Ankylosing spondylitis. I am not in remission. I’m not like some patients who are. My disease is moving, damaging, stealing my mobility, causing more pain. And the information sheet for the biologic I’m moving to, Cosentyx, states that after 16 weeks, 68% of patients on Cosentyx got at least a 20% reduction of pain levels and better mobility (ability to move.)
A mere twenty percent.
I hope I am not part of the missing 32% and I also hope I get much more than just 20% pain reduction. That would not be enough. I am struggling more and more each day. That reduction would take me to 2022 levels.
In 2022 I was begging to die. Didn’t know it could reach the levels I’m on. And I know now that it can get worse. I think of my Christian brother-in-law who had so much cancer pain that he was screaming if the sheet was creased. There’s fatigue and pain like this that stops me exercising, walking, driving, teaching. I try, but for the last two weeks, I’ve had little strength when moving for exercise! There’s pain. But there can also be pain that sees me uttering things I wouldn’t utter normally.
I have lost my optimism. I used to not want to just mask the pain by using pain killers as doctors suggested when we were trying to get this diagnosed. But now, three different pain meds give me no full relief. It doesn’t even become a dull ache that I can forget unless I start walking or when it’s night time and I’ve fallen asleep for a few hours. It’s always there. We’re at ‘pain killers don’t mask this at all!’ Instead of being woken by pain, pain is keeping me up. So much for trying to avoid pain meds! Now, you can’t give me too much!
You know, to not have anyone to talk through all this with is lonely. And so, I type. Maybe someone out there, no, I know someone out there is interested in my health and my limitations and joys. I shall type because I can’t speak. My children don’t get it, my husband doesn’t ask if the rheumatologist has written yet so he doesn’t know about the funding nor the Cosentyx prescription. Well, I haven’t told him about the latter because because I read that email at 11pm and he was fast asleep. Telling someone who isn’t invested isn’t the same as telling someone waiting along with you.
I am thankful for the small sisterhood that watches time speeding by and is sad that it goes by with no relief and only increasing suffering. I am sad for those like my migraine sister who are still waiting with no direction given. No lath set out yet.
Side note- I can’t find a pediatric OT even at least 20 minutes one way, away! What am I to do??? I guess I will have to muddle along. It’s better than not trying anything at all, right? I continue mingling OT resources with our normal school day.
My plate is heavy. It doesn’t even feel like a plate, it feels like multiple boulders being pushed down onto me.
I am weary.
I wish I was lying in that coffin instead of my father. But while I live, I’ll continue being the best mom I can be.
You know what? My talkative twin was singing in the bath today. I joined in. And her twin sister spoke-sang (chanted in time) along with us!! And before that, she had growled! She growled the exact phrase I’d said. A three word phrase!! First time immediacy echoing three words. She’d wanted to watch something on the iPad but my son wanted to make her watch a video I had put on. Hey, he wanted to stick to the rules. So I told him, “Ag, let her watch it!”
And in the bowels of the bedroom, behind the door, we heard, “Her watch it!” It was like a demon talking. I’ve heard demons talking (at church). It was hysterical. And cute. It made up for her pushing me out her room when I went to go sit with her. I always feel like I’m not doing enough. A friend sent some true story video where the mother basically isolated a little autistic boy, said words, repetitively, and then suddenly, he spoke. But that’s not what happens with all autistics. And so, I need to stop putting pressure on myself. He never wanted them out his space. He didnt react to them being with him, watching him, copying him.
She does. She reacts. And she don’t want me! Not at that moment. But there are other moments. Like later in the afternoon when I cut her nails and she opted to sit on my lap, and even before that when she’d asked for a kiss. She pulled me down, looked me in the eye and turned her head up a bit. It’s not like she puckers her lips. But we all know what that little upturned face means.
We will follow her lead. And I will let go of guilt. Comparison really is the thief of joy. And so, I’m grateful that nobody is sending me ‘success’ stories anymore. I am fine with her being fine the way she is. Besides communication, I want her to be content.
I last had Salazopyrin last Tuesday but still have dizziness today and had real vertigo till Friday morning. I even fell while crawling!!
BUT, my other joints that I started the salazopyrin for are complaining big time! AND I keep having what feels like kidney pain too!🥹🥹Is it the Salazopyrin? Is it the NSAID?? Is it even kidney pain anyway? What if it’s gastritis again? It radiates through my abdomen to my back. With doctor not even present in office I can’t ask what the heck I can do to help myself! I would love to have my blood tests sooner than my August date. My knee feels like it’s broken again. Like right across the patella and joint beneath it, someone chopped my leg with an ax.🥹
I’m struggling. Truly struggling. Yesterday -funeral- was horrendous. Not emotionally, that one I expected. But physically. I had made up my mind to sit at the end of the aisle so I could get up every now and then but as niece(who happens to be much older than me) insisted that she and her husband sit there. The pews are narrow so she had to keep standing up and moving into the aisle when we needed to go sing or make speeches so I don’t want to add to the disruption. Which meant I sat there in extreme pain. My poor pelvic area and lower back were taking it hard.
I don’t know. I really don’t know what to do. I just know that I have been abandoned by my rheumatologist and nurse and I am struggling. When I asked about getting handicapped parking discs and they said I should send the form in three weeks ago, why didn’t they tell me that the very next day they’d be out of office till July??
What I do know, is that I’m going to restart the Salazopyrin slowly again and if the vertigo does again get worse, I’ll know it’s definitely it. I need at least my knee to reduce the other pain burden I’m under.
Many months ago, I dreamt my dad had died and told my best friend. He did yesterday. I didn’t want to add it to yesterday’s good news that came hours before his death.
I don’t know what happened exactly. He had had a fall and was taken to hospital with a large bump on his face. It looked bad. (From the photo sent) He also looked thinner than ever. I can’t say how long he lay there with no help. Sadly, he kept rebuffing my brother and I when we wanted to hire a full time caregiver for him. My other in law even (again) got social workers to go investigate but he was adamant that he is fine with the level of neglect he was living with.
Saturday, my husband went to the hospital to see how he was. We’d heard that he was to be discharged as they had said he didn’t need hospital anymore. But when he got there, the hospital said he wouldn’t be allowed to see him-that ward only allowed those who had taken him there too see him. It is Trauma-Frail Care Centre. Weird rules and no rule bending. Groote Schuur Hospital sucks! How can you not allow a one person to see a patient given he was alone!? There didn’t even need to be a swop. He was alone. 💔🥹
I guess now that he has died, we know his situation was critical . But I wish he’d known we’d tried. I don’t know if he was conscious and aware of all those hours in hospital and thinking nobody cared to see him . I don’t know if he was in pain. He’d been put on oxygen but was now off it and when he’d arrived at hospital he had apparently been talking, telling them his eye and wrist were sore.
That’s what bothers me the most. The morgue I got for my mom didn’t do an autopsy for her. They just wrote “natural causes.” I surmised that it was her heart because the doctor duringa previous hospitalization the year before, had told me she was dying of congenital heart failure and she had been coughing for some months at night-something I know comes with it. But I still wanted to know if that was the real reason it if she’d fallen and the back twisting that happened as she fell out of bed is what killed her. I wanted full knowledge. Stroke? Heart? Fall? And here we are again. Stroke? Heart? Fall? Brain bleed after the fall? I’ll never know.
I’ve been up since midnight. I took my Salazopyrin tablets yesterday only because in getting worse and there’s still no word from the doctor. But midnight, I woke up to the room spinning fast as I lay on my right side. I then tried to sit up to go to the loo but the room was still spinning and I felt like I was going to fall over even while seated.
I am guessing it’s the meds so I’ll go off them. But then I’ll lose the little impact it has had. And it does not help that google says arthritis in the neck of an AS patient can cause the same symptoms. I’ll try going off the Salazopyrin even though my knees no longer feel like they are cracking. But it’s dangerous. I even considered crawling to the toilet! It lasted till 1:30.
And then, my non verbal angel woke up at 2am. The other day it was 4am, then 3am and all those times, she stays up. So I’ve been awake for ages guys! And I’m sad for my dad and in pain. So much pain. Typing hurts. Elbows, wrists, thumbs. And my back is getting no reduction in pain at all.
I phoned the rheumy’s rooms and the best I got was that I’ll be copied in to an email going to the Cosentyx nurse who is meant to teach me how to inject it. Except, I don’t have meds to inject! And it’s not like you can the script today and then get the meds tomorrow.
Life stinks. All of it. I am so sad over my dad. He deserved to be treated with love and dignity. Sadly, he chose the person who was living with him who was not loving nor caring. And because he was compos mentis, the social workers couldn’t force anything on him. Hands tied. Bad last memories. And a dad who died with bedsores from home. I am heartbroken.
They said I should write a book 