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.
I was walking in the kitchen as my husband cooked, and something in my groin cracked loudly and I almost lost my balance as my leg painfully gave way. I screamed. Then laughed. (Don’t go to the kitchen when you’re not eating because you’re doing colon prep for colonoscopy! The smells will kill your.)
See, just a few minutes before, he’d told me that I was obviously having a very bad passion day because I was making a lot of noise. Groaning to pick things up off the floor, moaning when bending, breathing hard and loud. I hadn’t noticed. But he was right. Because two of my pain tablets contain codeine (causes constipation) I decided not to take them to help the colon cleaning mess do their job. I don’t want to go through this prep again any time soon! Especially having been told not to take any pain meds at all today/this morning. (They want my colon etc as empty as possible so they can see everything clearly. I’ll also be having biopsies done-as always-which are so painful AFTERWARDS!)
In the middle of the night, as I sat up supporting myself with my right hand as I got up, my shoulder cracked so loudly it woke my husband up. As I sat down on the loo, CRRACK from my pelvic area. My shoulders have also been cracking when I’m doing lat pull downs too… Given my reduced shoulder mobility and how I started getting worse each time I had cracking and pain (Like back in 2021), this is not welcome at all.
Everything is hard. I’m meant to do 30 seconds of these, three times.
When I began in August, I could do two 30 second holds and a few seconds of the last set. I can’t even complete one set of 30 anymore. And I can’t go up as high.
I mentioned how bad this was back then, I didn’t know it would get worse this fast. My back pulls me down. It’s unwilling to bend. It’s as if the whole weight of my body, like gravity itself, is working against me and I can’t breathe and end up collapsing.
It’s scary.
Watching your body give up on you is indescribable. Feeling it get worse is horrific. The pain is unbearable. I can’t wait to at least start trying to find something to slow this down. Right now, my pre-filled syringes are accumulating in my fridge. I need them in my body.
Did I tell you how the pharmacist reacted as she added up my total when I went to fetch my injections and the prep for today’s Tess? She knows me well as I always collect from that branch, “Mrs Nkomo!??? No! This is not right. I’d hate to be you!” Yeah, I hate being me too sometimes! As my husband put it, “Don’t worry about the cost of six children. Your health is costing us more than all of them combined.”
Ouch. That’s including their therapies and meds.
Yeah, being a burden and a financial cost was never on my agenda. Being the cause of worry was never my plan. Disability was not one of my goals. But unless we slow this freight train down, that’s exactly where I’m headed.
And guys, I really, really am not enjoying this prep thing. No sleep! It was actually my bladder working over time in the night because of the amount of liquid they want you to drink. Only a few times did I empty my bowel. Only NOW is that really happening…And I really, really should not have booked today’s procedures to be done less than a week after surgery. But it could be worse! I could be living in my first home as a child, where the toilet was out in the back yard. I guess I’d be using a bucket and waiting for day light to go empty it. Yuck! It could be worse.😉
I had an inkling this was a more inclusive practice when the practice manager answered in Afrikaans but then giggled at herself when I responded in English and corrected herself.
She was extremely talkative over the phone. Giving lots of information. More than I needed, actually! And she came across as very kind.
I hadn’t wanted to go to that office. I’d had a bad experience with the gastroenterologist in Claremont. And another Afrikaans orthopedic surgeon also did me wrong, so I was nervous. But the other area where there are gastroenterologists on my network is more Muslim-friendly. My sister was admitted there and the nurses weren’t as kind to non-Muslims as they were to Muslims…
I showed the professor’s picture to my husband, assuming he’d also agree that I was setting myself up for disappointment if I made an appointment at his office. Instead, my husband thought he was perfectly safe! I should have shown him the orthopedic surgeon’s photo then he’d have known why I had a trauma response to his face! They are same-same language, same age…
But that’s where the similarities end.
He was so thorough that he even checked my heart, seeing as AS can affect it. He explained how AS sometimes impacts the intestine, stomach and said the magic words, “..and sometimes they have chronic gastritis…”
BINGO! Remember the gastroenterologist who said it doesn’t exist!? Grrrrr. The one who refused me a colposcopy?
So, I’ll be having not only a colonoscopy, but a gastroscopy too. He also plans to biopsy my wall even if it looks healthy, to check for h. pylori. Five days after my bladder surgery is when I booked for it to be done. I might be too brave having it so soon and so close to my bladder, but I want all the theatre stuff over and done with.
Husband is kinda worried the bladder issue is cancer and I’ll need more surgery on that same date. I don’t know! Maybe I’m stupid to be so blasè about the growth, maybe I’ll worry just as they wheel me into theatre, but I honestly think it’s yet another benign one like the ovarian tumor and the uterine polyp. I’m only worried about the recovery process.
His office manager was also a dear. Very informative, very kind. She definitely said a lot, but she’s lived long and seen bad and good doctors so I forgive her the extraneous stories. They were cute. Just not good for a patient in pain. (She used to work at a large hospital but had taken pension and retired when she was asked if she could fill in for the Prof’s office manager temporarily. Which ended up not being temporary after all.) She too was dismayed that the other gastroenterologist refused to do a scope on me. She muttered, “I wonder who HE trained under!” (Prof does a lot of training and two of the gastroenterologists the rheumatologist had suggested were trained by him-but are not in my medical aid network.
I don’t know if medical aid will pay for another gastroscopy but there’s only one way to find out, right? Thankfully with there having been gastritis found every time I have endoscopic procedures shows them that I’m not just wasting time, and my last colonoscopy was in 2014, so there is no way they’d not pay for THAT.
People, I felt seen. I felt heard. I knew I deserved to be rested and for him, it was an invited thing too. He even told me of a medication that would protect my heart and reduce AS inflammation- he said it’s brand new research. A tablet that is take once a day. Pity I can’t tell my rheumatologist to try whatever it is! I didn’t catch the name. He also suggested ways of dealing with my IBS-C and the worsening of symptoms thanks to the tablets I’m on.
He’s a keeper. He and the office manager truly show respect and concern. It made up for the bad doctors. I told a patient who was in there waiting to be seen that she’s in the right place. I told her I’ve had colonoscopies very often and apparently had one when I was seven years old (I don’t recall) and seen different gastroenterologists and he’s one of the best.
Let’s hope for rapid recovery and that the scope for the colonoscopy especially, doesn’t make things worse for my bladder, recovery. And that there’s nothing TOO concerning inside this body!
Oh, about the orthopedic surgeon… I went to him after two GPs couldn’t help my heel pain and shoulder pain back in December 2021. They tried… They cared. They believed me. The one even tried injecting my shoulder joint with cortisone but the joint was “maybe calcified” and he couldn’t get the needle into my joint no matter what he tried and no matter how many times he pulled the needle out and poked me again. I wanted to be done! He was sweating and feeling so bad! But now I know it’s AS (seeing as my shoulders have lost mobility too.)
The orthopedic surgeon spoke to me, a very obviously non Afrikaans person, in Afrikaans. He didn’t ask me any questions such as, “How long have you had these painful areas? What have you tried? He ignored me when I told him that when I raise my arms, I had started hearing cracking. Instead he told me that his shoulders also get sore sometimes, that everybody’s bones crack, and didn’t even address my heel issue. He hurried me out and I felt like crying.
The only tears I’d have shed today were tears when the office manager -after I told her and the patient that theirs was a practice that cares-said that God puts us where we should be, that if her husband hadn’t needed open heart surgery, they’d have been gone to an overseas country that I won’t name. Instead, she stayed on at the job when the lady she was subbing for wasn’t available anymore, and she helped calm the fears of the lady who’s brand new to sickness
(I have found that the AS patients whose AS is not under control, who aren’t thriving, who end up with double whammy issues – one with AS and cancer, don’t continue blogging. It’s the “I’m so strong, I have run 29 marathons despite having AS” people who keep their blogs up. It’s the ones who don’t have it as hard. It’s the ones who aren’t suffering MUCH, who keep sharing their successes and triumphs and how ‘strong’ they are… It’s very few who keep telling their truth. I’ve only found one young lady on IG who is open. Who shares the better days, and the awful days when she needs a walking frame- despite being on biologics for years, now moved onto infusions as the biologics didn’t really help much.
So, here I am. I hope to continue as long as there’s a reader. And if I join the “my AS is under control” group, I won’t post about it, but more about my other life. The other issues that are chronically mine by virtue of belonging to my dear children-the autism, the ADHD, the vision therapy. I don’t want the sufferers to feel alone. And that’s how I feel. I’m glad others can run up 10 flights of stairs. I can’t even walk up 5 flights of stairs. And I know there are others who can’t either. We will keep each other company. We will be strong despite our bodies weaknesses.
People need to know that AS is not the same for everyone. They need to not look at so and so who’s doing awesome, and expect you to be like them. So, while the sick ones drop off, I will continue. And I hope they aren’t like the ‘celeb’ I’d never heard of who killed himself due to pain. I hope they’re just tired of blogging the same old story. I hope they’re still alive… Even the one who began his terminal cancer and AS blog. I hope you are silently surviving with much support.
Now we begin my original blog post for today.)
Like, seriously… This has been hell. True hell. I recently DREAMT I was at as hospital begging for morphine and I think it’s that bad that if I could, I’d ask for it!
I now know for a fact that NSAID do help me, if they’re at the right dose. I also do know that I’m no longer a “I only get swollen and sore in winter” patient anymore. When I was still on the NSAID, I wondered if perhaps my fingers were ok not because of it, because of Spring.
I have no more doubts. Even my big toe is crying. Yesterday I wanted to type but both hands were swollen and stiff and so painful. I didn’t know it would get worse till my HAND pain woke me in the night. Seriously!? Come on!
Yes, the Exinef 90 made a huge difference.
But…They say that if you go off a biologic, your symptoms can come back with a vengeance. Like, BIG time. And damage can speed up. Could that be it? Can it wreak havoc even though it had not made even half a dent in the pain and stiffness and fatigue? I thought you’d only feel the impact if it had worked. Now, I’m not so sure.
All I know is that hell is back. All I know is that I’m back at the point I was at when I thought I’d give it one last shot at diagnosis. I’m right back feeling the pain that made me beg God to just kill me.
My husband said that he was watching on video as I took the little four on a walk on Monday morning. He said he sat there watching his phone screen and thinking to himself, “What is she doing!?? Where is she going? She is already walking like she’s suffering.”
When we take walks, I don’t realise my state. He always tells me I’m limping. I took a morning walk yesterday as the sun is now rising early. Oh.my.word. He’s right. I stay limping early. And by the time I turned back home, it was a link with horrible pain in my right SI joint. I wondered what others thought as they watched me. It was too visible.
I am not at my best and I have to go quite a distance today to go see a gastroenterologist and ask for a colonoscopy. Let’s hope he’s a good old man. I know he’s old. He’s been at it for 40 years and he looks old. I hope he’s like the obstetrician who delivered the twins. 🙏🏾 Let’s hope it will be worth it. We need all the good doctors we can amass.
Well, I decided to take the children to Tygerberg Nature Reserve. The flowers, birds, a turtle…
Our usual crier was remarkably happy! This is someone who once got to a park and immediately screamed and screamed because we didn’t want to stay next to some tree she liked. So she played around it with her dad. Now with dad not being there, we weren’t sure who would be doing what she wanted. Nor did we know what she would want.
Besides wanting to enter the men’s loo when her brother went in, she was FINE!❤️🥰
But her twin! That girl can talk the monkeys off the trees! And she is such a typical Miss Independent. There were times I knew the path was ok so I let her go, there were times she AND her twin wanted to hold my hand when I really would have been ok on my own😉and times she decided she knew better than me and ran, fell into a hole and her bunny flew into the air and onto a bush!
It was good. We had never used that path or trail before so turned back when we felt we’d walked long enough. Next time I’ll go without little ones and see how long it is and if they’d have made it all the way round.
Oh, the other thing of note was Twin A nagging as we walked back that she needed an EYE doctor for her sore finger. One of the bushes she didn’t want to stay away from stings! I tried to mollify her by telling her I’d put cream on it when we got home, she didn’t buy it, she wanted the EYE doctor. I told her I’d give her pain meds. Nope, “eye doctor!” But lo and behold, when we got into the car and I handed her some Vaseline, the placebo worked immediately! She was suddenly and very quickly, “Better!”😉
And yes, as Flydah and my husband predicted-which they always do when they know I’ve had an active day, I paid dearly for it with even more pain later. I read a thread on Reddit where 5000 steps a day was the max some people could do and know they’d be fine the next day, no suffering from the after effects of too much. But man, that doesn’t leave me with much time to do chores etc if I have to do so few steps. I’ll keep hoping that we get to the other side of the surgery, that we find a biologic that will reduce my symptoms and slow down the disease.
My first daughter and I
Oh. One thing I added which nobody commented on was how I kept sleeping when we’d stop at a red light. I’m the driver… I don’t know if AS fatigue is increasing (I’ve read others’ accounts of them falling asleep in a parking lot or dropping their children off at school..), I don’t know if I’d taken way too many pain pills (Some make you drowsy) or if it was lack of sleep catching up on me. But either way, I realised I’m really not well!
But here we are, home safe. Nobody had to hoot to wake me up and the children didn’t even notice. It was a good Sabbath.
My husband is overseas and keeps telling me to sleep. I keep telling him I’m in too much pain!!! (It’s 11pm here.) Ahhh. I’m at the stage of pain where if you are chatting to me about nothing linked to me, or about something trivial, I can’t. I just can’t. I need to curl up into a ball and focus on something deep. Something deep about to take my focus away. I can’t do trivial when my body has been on fire all week and the only person who seems to get it is in America.
Pain is lonely.
Pain borne alone is very lonely.
BUT I also have the joy of knowing I don’t fail. While my children were awake, I didn’t let the pain overwhelm me. I didn’t snap at them. I tried to do as much housework as I could so my teens didn’t feel like glorified slaves once they got back from their exams. I did bed time with my talkative twin. I did so much school with my middle two that they asked to stop. I did that with screaming bones.
And so, I know God understands that I’m too distracted to read the Bible right now. It needs depth I cannot give it. And He knows I’m thankful for much. Like my eight year old who knows exactly how to engage with my non-talkative twin. Who sits with her instead of trying to force her to engage with her. Proud of my little girl.
She’d made me put the box on the sleeper couch and just lay next to it for a long time. My girl respected that and worked with it.
Yesterday, I reached the lowest I could reach. But then I was lifted up.🥹
Someone said something that made it patently clear that they have no cooking clue how bad this is. How the fatigue weighs me down daily. How it’s scary to feel my lungs suffering when I try exercise. How frustrating it is that things I could do easily just months ago, are impossible now. They have no clue, despite the amount of awareness posts I’ve done, how all-consuming and painful, oh, so painful this disease is.
If I DO sleep, I have nightmares that people are drilling into my SI joints with the swords. Or I dream that I’m at the hospital begging for morphine. (That’s just this week’s worth of dreams that I can recall)
I realised you can never raise awareness of everything and make it make sense to everyone. The whole point of ‘awareness’ for me as a Christian AS patient with other organ problems) is that people understand the reality, to know that for some people, that one step forward took much effort, so don’t except them to hike up a mountain. Awareness -for me-is so we are all kinder and more thoughtful of what we say to each other because we have no clue how many smiles are painted on but not genuinely FELT. It’s to show that I am “content with whatsoever” God allows, but I’m not well. For people to know that the happy grin is hiding a grimace of pain. I’m just trying to live the gospel, to be a living example of faith-resting in His promises instead of my present reality.
But if all efforts at awareness fail, it’s time to stop and just blog. Thats the problem with an invisible disease. It’s not as dramatic as something visible and so they act like your reality is nothing horrendous.
BUT, know my awareness hasn’t totally fallen on deaf ears. I have a young newlywed who even years ago when all she knew about were the sleepless nights due to pain and IBS, the iron infusions told me that it helped her appreciate her life of painlessness. She said she’d never been sick so couldn’t comprehend but it made her more gentle and kind to others. And more aware of suffering. Her words and the words of a mom of many keep me going when it seems those closest to me inflict the worst pain by their ignorant comments. And there’s no point in flogging a dead horse. At least now when I’m not at church, members who have my number and see my posts understand the multiple reasons why I’m not there. (Children and me) And when I AM, they can understand why I leave early. I guess my awareness job is done via that platform.
I watched a video this morning and what the AS patient said reminded me of her statements and brought tears of “YES! You get it! And I get YOU!” rolling down my cheeks. And this is someone on helpful treatment, but he still has bad days. It validates me who after more than a decade of actively seeking an answer, had a diagnosis in January and is still untreated. And instead of moving forwards with help, having to stop one med that definitely was helpful, and unable to keep trying one out to see if it WILL be helpful. I have every right to be forcing myself to ‘be’ and to expect those closest to me to understand how exhausting the mental and physical burden is.
The brain fog is an aspect I haven’t touched. I think mainly because menopause also comes with memory issues. So, I got home and was very sure that I left my shopping in the trolley in the parking lot. Then I couldn’t find my car key to go check if that was so. Then my son brought the key, telling me I’d left it in the ignition. And yes, all the shopping was there. But I can’t recall if I put the trolley away or just left it there in the parking lot for a trolley guy to find. And I hate that. I usually try go put it back safely or put it against a pillar so it doesn’t roll into a car. But I don’t know what I did.
And that’s just a bit of it. I could not find my phone. Yet I’d brought it to my room. These things seem mild, but forgetfulness and mental fatigue are bad. Especially when you have children who need to be medicated. (Did I tell you I’m on a huge ‘let’s limit the meds and try supplement with supplements so they don’t have to use as MUCH?” And also trying to help my definitely ADHD four year old who can’t be medicated anyway. I need my brain. I need to remember all the exercises my children need for vision therapy, for occupational therapy, and to remember to plan their school work.
I was going to post this as a status, but you see, there’s lots to say because it doesn’t end with tears of heartache.( Typing while I listen to my screaming, over reacting son. There’s an emotional pain that comes with special parenting that I don’t even try to raise awareness of. A daily, constant, grinding worry and draining, gnawing anxiety.)
See, I have different people for different parts of life, and that’s ok. We can’t be everything to everybody, though we can be sensitive to each other and choose our words, say things to those whose health is also intact rather than to those who wish they were healthy- a lesson to me too, to be watchful and sensitive…
She sees me. Her child suffers daily though mostly invisibly too. She knows that pain and trying to ‘live’ at the same darn time are not easy at all. You’re forcing yourself to ‘be’ when you wish you weren’t…I don’t know how long I can go through with the fake “incredible woman” act though! My husband has certainly seen his share of tears when he’s around to see them. Busy traveling all the time!
I have a friend who’s mourning the death of a neighbour who had a very young autistic child, worried about the level of love and care the little one will have, worrying about MY little ones. She sees. She sees the totality.🥹 She too has secondary gnawing anxiety of a sort. And she worries dreadfully about the financial impact – I have to pay the hospital R4050 for the surgery and the doctor’s fees aren’t fully covered either. And who knows how much the anesthetist will charge! It’s a horrible stress to have. I think of the new father who has joined our group who wished he was dead so his family didn’t have to deal with the consequences of this stupid disease.
I don’t need everyone to get that every day is a battle. I don’t even need any one to understand how horrific every day is. Yet some do. And really, that’s most important. My terrible attempts at awareness did make a difference.
There are those who live it and share it, who I can weep with. There are those -the very same person who made my awareness feel like it has failed-who put all the pieces together (the struggling lungs when I exercise, when I wake up from surgery, when I get sick) to make what I know is a very ugly puzzle but is sadly not a puzzle I can throw away. To have parts of me seen is more than others have. Others truly don’t ever get seen at ALL.
And I am thankful. Thankful that though He is as invisible as my diseases, He is definitely as present as they are, no matter what unbelievers and doubters may say.
And He sees.
Today, I choose to be silent about me and how bad things are, like I was yesterday . It’s a bad day. Worse than yesterday, and yesterday was so bad I couldn’t even shower. My husband phoned and I tried to get out of answering his questions re my health. I couldn’t even do all my AS exercises yesterday. Just did some arms and the breathing to try slow down the fusing shut of my ribs. I can’t describe the anxiety in that thought while also not treating the disease at all. I’ve seen this kill people. It plays on my mind even when I’m not in excruciating pain like this week because it HAS to. I HAVE to do those exercises. I’ve already lost more mobility than I should have. And I will tell it to God- and whoever is unfortunate enough to be reading this blog. Sometimes I feel bad blogging about AS or kidneys or operations but then I remind myself, “Your url is chronicallyyours! They know what they are here to read! Don’t sugarcoat anything!” So here I am.
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.
Two years ago, a friend who I’ve complained bitterly to about my back (Remember, I only got my diagnosis this year) came to take care of me after surgery. I asked her to watch over my children at home while I convalesced in an AirBnB which she slept in too. She remarked one day, “Sisi, I see even more that you need a helper. Your floor!! I started sweeping and wow, even MY healthy back started complaining. There’s no way you can do the entire floor and mop and do all the other chores. It’s too much.”
Very true. Even healthy moms homeschooling six crazy children would find it hard if they have my standards of cleanliness. (Quite a few have said they wouldn’t clean as thoroughly as I do.😅)
I have a three half days a week lady who comes. But ironing is not her forte, to put it mildly. But she’s awesome with the children. My ‘I don’t like strangers. I don’t talk’ twin even told her big sister to “Open” a door leading to where our helper was sitting and eating, and even said “Climb” to ask her to help her climb onto the dining room chair. My angel sat with her for a whole five minutes!🥹So she will stay even if her ironing is bad. But that leaves us with that bit done. I try and my back complains. I try, and I get scared I’m causing my back to fuse bending forward. Maybe I’m paranoid. But with uncontrolled AS, who knows? I think I would prefer to be fused totally straight. IF I were to fuse at all. Given I’ve lost so much mobility that my rheumatologist is amazed just can’t still turn my neck when changing lane, imagining myself being fused isn’t a step too far
So yes, here we are with a husband who wears formal shirts to work, children who play a lot and get very dirty, mainly from food they spill on themselves! And we are left with way too much ironing for me.
Enter a third ‘helper.’ The Iron Lady, located a few blocks away. Their prices are very competitive given you can take as much laundry to them as you want. As often as you need. And they do the job really well. And they want to know how you want it, which for an OCD man is great. (He wants the hanger to face the left with shirt facing you, the holder. And no lines on shirt sleeves – I forgot to tell them that one- and no lines on pants either. And of course, no ironing if black work pants on the outside. Which the Iron Lady people make sure to tell you they do not do.)
The owner is a wonderful lady. I told her how yes, it’s a paid service, but for me, it’s a blessing because I WANT to iron our clothes but my health stops me. She said that she’d never heard of AS, doesn’t know what it does even now, but she has two other clients who also have it. And that she would pray for me and when they iron things I wear, they’d pray over me. 🥹
Thursday afternoon, when I went to collect some ironing, she told me that it’s quite busy, so I might need to collect the stuff on Saturday. So I told her, “I’ll do it Monday then.” She reminded me that they do open for half of Saturday and I explained that I’m Seventh-Day Adventist. As soon as I said that, she said, “Ahh! I know! No work on the Sabbath!”❤️
And I got my washing yesterday (Friday). Which reminds me to thank her and her staff because I was really ok with collecting on Monday!
Those are the things that make life easier. More expensive, but MUCH easier!🙏🏾
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.
They said I should write a book 