It’s getting harder to enjoy living. 2022 I had hoped to die. But here I am. Yesterday I had the surgery and ablation and yes, the surgeon (my gynae) did find a growth that he has sent off for testing. But like the other growths and tumors, I am trusting it’s going to be non-cancerous.
The problem is..I am chronically yours. I get irritated with people who tell me about their operations if they don’t also deal with constant pain. We can’t relate. You aren’t going in in pain even before the procedure. But I don’t tell them that. I can’t. It’s my own problem to deal with. People try to do the best they can. They care.
But AS is not only forever, it’s raging. It’s untreated. It’s bad. It’s awful. I can’t find anyway to reduce the pain. Even sitting in my friend’s car coming home from hospital today, she kept pitying me as I shifted around unconsciously, trying to take my weight off my painful SI joints. Impossible. You can’t sit without sitting on your bum, can you?
And with each increase in pain, is an increase in fear. What will happen? What is happening? Am I going to be bent over in a year? Will my neck be moving in six months’ time?? And here I am, writhing in post-surgical agony. I don’t know if it’s gas from anesthesia, pain from the procedure itself, or constipation. After all, your intestine rests on your womb and mine hasn’t been emptied in at least three days. It feels like where my left tube used to be, something is twisting hard and the pain is going to my rectal area. Four hours of this and counting.
There are things worse than death. Living while feeling useless. Being a mom when you desperately need to be mothered instead. Smiling when you should be crying and letting the suffering out. And worst of all, knowing that your chronic disease and this surgery aren’t the worst. The worst is yet to come when I book and undergo ulnar nerve surgery while bearing the pain of ankylosing spondylitis.
My pre-op consultation is this coming Friday. My bones are not giving me a break. Swollen, screaming, even if approval for the next attempt at treatment had arrived, I would have to wait two weeks to start it. And approval hasn’t arrived- when will that happen?
It’s a good thing I don’t live in a country where euthanasia is allowed. I have no choice but to live. And so I will try living with grace. As my friend said today, “and yet you’re still smiling.”
Better than making us both cry by weeping in her car, right?
Since yesterday, the pain has been steadily increasing. For now, it actually is WORSE than before. I see online that you can even take two weeks to feel improvement. I hope it does come.
And this is similar to what you’ll find in the groups. Not many got any benefit from this steps and pain med combo into the joints. But it was worth a shot (pun intended)
I’m meant to wake up in an hour and get ready to be at hospital in the other side of town at 7am. Surgery happening at 9:35. Dreading the hospital bed, the boredom and hoping it will be warm. Woke at 1 to take my last allowed swallow of water with my pain tablets. If they haven’t even worked in over two hours, definitely in for a bad hospital bed experience.
BUT such is life! We have to take the good with the bad. And the good is that my daughter’s cast is off, and she is happy about THAT!
Two nights ago, I kept waking up because of severe pain. We’ve now moved me to a full Trepiline tablet at night. It helps pain a bit, but more importantly, helps with sleep so you sleep through the pain..hopefully. But I’d taken only half and my body was in big trouble.
I had taken my oldest daughter far away from home to go do the first of three sessions of exam preparation for her Biology practicals. And, as most of us know, the pain from too much activity or sitting, rises AFTER the event. And so it did.
I woke up and was suddenly in a panic. “I’ve not been on any treatment even after diagnosis, basically! I’m doomed! The pain is because my joints are fusing right now as I lie here!! I’m going to wake up walking like a mummy.” (It didn’t occur to me that mummies don’t walk!) “Should I go to the fridge and just inject the Enbrel in there? After all, we can’t just leave it unused!”
Sanity prevailed. Why would I jeopardise my life when I have an operation coming up tomorrow? Why would I dare reduce my chances of fighting any potential infection or slow down my healing? Would I be so dumb?
I wasn’t. But those injections keep calling my name every time I open the fridge. They are a huge temptation. Moreso because I don’t have approval for the medication we are hoping to start. Half a loaf is better than none, right? So I might as well use what I’ve got than nothing, right?
And then there will probably be elbow surgery too. Long, long wait. So I patiently wait for the certificate from the panel of rheumatologists allowing me to start taking the new treatment, and approval from the medical aid to pay their very low percentage.
It IS scary, feeling the disease progress. But it would be scarier knowing that I’ve put myself in harm’s way by injecting myself when I have high risk situations happening soon. So…I close my fridge door and hope for the best.
Oh yes, I did my bilateral SI joint “infiltration” last Friday. The intact so far has not been felt. Well, not the positive impact. I’m lying in bed and the pain is already there at 7:04am. I tried working out earlier on but was too stiff so will try later.
After a bad night, I’m sleepy now. But my kiddies wake up (the twins) in 3 minutes and counting! I must set my alarm for 2am tomorrow to take my pain tablets before my fast for surgery. I hope it vibrates and I hope they are effective for those horrible hospital beds.
I went to look for new books at CUM bookshop at Canal Walk the other day. But they didn’t really have much. I chose maybe one book for my middle two, a biography for myself that I’ll lend the teens when I’m done with it, and then this card game.
My aim with educating my middle two, is to make sure that their foundation is strong. Given they are learning disabled, why force typical learning for their non typical brain? So I mix things up. Sometimes a page or two from their normal school books (Christian Light) and anything therapeutic I can put my hands on, always bearing in mind the specific challenges they have.
This one seemed perfect for working their working memory. They have four of each card so up to four can play.
Today was my first time using them with my eight and nine year old and we played SNAP! I chose 4 pairs of cards upside down so I don’t weary their brains, and they each would pick up two cards and turn them over. Then put them back upside down and the aim was to hope that the players recall where each card was so that if they pick a matching one, they go back and pick it.
And before I could even mention it, Amarissa asked if they have Bible verses on them! Win! So we discussed the animal, the number on the card, and the verse..and worked on working memory in such a fun way that they were sad when it was over.
Win!
As for my four year olds? Play includes learning so there isn’t much happening except my taking note of unusual speech patterns in my very talkative one and making videos that playfully correct them. And showing and modeling saying “Thank you” for my (mostly) non speaker who does ask for specific foods but hasn’t learnt to say thank you yet.
My twin above- on the left of the picture as we view it- constantly begs me to read to her. She’s obsessed with two books. A “Seek and Find” David and Goliath book, in which every left side page has some items for you to look for in the right side page (sheep, the sling etc) and God Rescues- a book about Pharoah and Moses. I laughed recently. She came to my room instead of going to bed. and asked me if I’d read to her. I said yes. She ran out my room and told her biggest sister who was waiting to get her to bed, “Ella, Mommy said, ‘Let’s read!’” I love that interpretation!🤣
She is super busy, always wants to be read to, to play… Her quiet alone time has reduced in length.
And my non- speaking angel?
She is hilarious. She is still happy without us. I knelt down next to her while waiting for her to be changed out of her shoes for nap time, told her I love her..and she gently pushed on my knees, showing me I must get out her room.
Her dad popped his head into her room yesterday as she stood by the door getting toys out the wardrobe. She saw him..and tried to shut him out by pushing the door closed.
They’re happy. They’re getting over a horrible cold that has kept their poor noses blocked and miserable. We adults know how frustrating it is to have a blocked but runny nose and we can sniff! They aren’t there yet.
Anyway! This was meant to be a ‘homeschool tip’ type blog so I’ll end here because my wrist is extremely sore. Stupid AS. I’ll share some more on my YT channel. It hasn’t impacted my jaw this time ! Look for @thandilocks
How to stem the tide? My daughter’s birth mom agrees with me that she probably has ADHD. I’ve seen what undiagnosed ADHD does even to professionals with degrees. There’s a case I know of where the manager of a Black female was pretty sure she has ADHD. But the HR department said it wasn’t anybody’s place to ask her to be assessed . This young lady had already been moved from a job she was not performing well. And now, she was going to be moved yet again to smother lower paying role.
We know more who immediately get fired. Even those who are diagnosed and whose bosses know. How much more my child’s birth mom who’s in the kind of job that accepts people who don’t have degrees. Job security is reduced. Have a worker who can’t pass the written part of a menu exam and it’s a mess. It’s a set up for someone with undiagnosed ADHD to fail. Learning ingredients and being tested. No concessions. No checking if she even needs to know the ingredients or if she can’t call a different waiter to do that part if a customer asks. Or give her time to learn the ingredients as time goes by. But nope, she failed the written part and was only given a part time contract. Not the full time job she’d hoped for. Waitressing. And given the staff share tips, they don’t get to keep their own tips, the waiter who might recite the ingredients on her behalf gets some of her tip anyway. Imagine her being a phenomenal waitress, bubbly, but she gets the same tip as a surly waiter who might have not received any tips. And I know she would get tips. At her previous job, customers went out their way to praise her. I even saw an email sent to her manager about her. She is definitely getting tips on the few days she’s working. Pity she’s sharing them. But that’s how that business works. Just sad that there’s no protection for her. It’s not like she could afford any meds for the ADHD anyway. She has to pay for the baby’s nanny and their food clothing…
Helpless.
We had tried to stop the cycle. Birth mom warned and warned her daughter about premarital intercourse. Offered to go with her to a clinic if she thought she’d want to have sex before she’d studied at university. Then we found out the teen daughter had a baby. And there is – yet again- an absent father. Just like with birth mom’s case except for the middle child, my daughter. He is present. Just unemployable. Sad that those with jobs aren’t taking care of their children. And so, it’s all on her. And now she has a grandchild too. All on a waiter’s part time wages.
I might have typed all this when I first mentioned birth sister had a baby. But at that point I didn’t know the potential dad would be absent. I didn’t know all of this would be on birth mom’s shoulders. Even if she wasn’t already clinically depressed and on anti- depressants, this whole situation would have caused depression.
And so, despite our hopes, the cycle has passed onto the daughter. Unplanned baby. No baby daddy present. No formal post high school education (yet.)
I’m sad. So, so sad. We can’t change anything from the outside no matter how high our hopes are. And I mention this because I realise that I’m relieved I never did become a child psychologist. If the child is depressed because of abuse, I can’t help them. If a child is depressed because the mom favours a different child and mistreats them, I can’t fix that. I can’t change the situation. Teaching resilience and strength isn’t what I wanted. I wanted to change a child’s world for the better. But there are too many forces out including the there that prevent that from happening. Including the child herself.
I don’t know why…Before, I had lots of American friends I’d met online through our love for natural hair and locs. I knew they’d be reading my blog like I was reading theirs, so I wrote about my life here in South Africa and in Kenya and back again-and the process of my locs locking.
I also wrote because I wanted people to see that it’s possible to obey God and be content and happy. To have a home that glorifies Him.
Today…I write because life stinks and I want just one Christian with a stinky life to know that they aren’t alone. Invisible illness- if you don’t have a high EQ partner – is a very lonely illness. I’m hoping that one day, a desperate person will be helped by my words like the mother of an autistic child was helped many years ago when I wrote about my now eight year old and his struggles.
That reminds me of the other reason I write. Autism is different for each autistic person. By sharing all my children’s quirks and difficulties, I hope to help another caregiver feel less alone. We are in this endless battle together.
I don’t know if they’ll ever find my little corner of the worldwide web, but I hope they do.
I also write to process my feelings, to educate, to raise awareness. I know of one person who js more aware of the possibility of a child having autism or ADHD. They’re more aware of the world of neurodiversity. And her awareness has led to more sensitivity and thought. And that makes me happy.
I hope I don’t forget these reasons when I’m tempted to stop blogging. Some day, someone in the future might find something in here that resonates. That encourages, that strengthens, that makes them feel less alone.
Or as has already happened, who can get to know me and my world better. Because they’re interested.
There was a day when even modifying my back stretch exercise to a much easier version didn’t work. When it caused too much pain. I thought, “Is this the beginning of the end? Am I headed inexorably to being hunched or fused straight?”
There was a day I couldn’t do my shoulder and back exercises. I gave up in dismay, but hoped it was “just a bad day” and not something more sinister.
There have been DAYS where I have told my husband that I can’t search for my clothing because my shoulders hurt too much and I need to bring my arms down. Days when just hanging laundry tires me out and my arms shout NO. Times when I realised my arms weren’t moving as far as they should during my AS exercise. But I told myself I had begun badly -unable to do that exercise ever- so maybe it was not any worse.
I have mentioned the increasing pain here too many times to count.
And so, it should not have come as a surprise when my rheumatologist tried to move my joints, felt me and things were proven to have gone bad. My shoulders wouldn’t move as much as they could. She felt them protesting. Stiff. My fingers, wrist are swollen. My foot is swollen. My neck… My back… The measurement test she conducted on my back show progression. The phrase “incurable and progressive” doesn’t really show the horror to many non native speakers of English. Nobody ever says, “It gets WORSE? You mean this is the best you’ll be? But this is already bad!!” It’s too benign a description for what it means.
And so, medication change. I get sick too often to get any benefit from Enbrel. Consentyx is a once a month injection that ironically costs way more than Enbrel😔 and medical aid doesn’t even pay half the costs even though we are paying them way more in monthly premiums after moving to their most expensive plan.
I was extremely down yesterday. It’s one thing to feel pain and increasing stiffness. But I thought it was some prolonged flare. I didn’t know it was that bad.
So, we await medical aid approval and for the panel if rheumatologists to convene and agree. In the meantime, I’m not crazy. I really am worse. And will continue at a fast pace given I’m off treatment anyway for surgery.
I loathe all invisible diseases. Nobody can see the fatigue or the pain. My teens didn’t know I was suffering because I never verbalized it and my body language didn’t show it. I need nurturing. But I can’t rest.
I hope for better nights one day. I hope Cosentyx will be the one. After all, my husband said he felt the second biologics were try would be the one, let’s hope!
I googled ‘uterine cancer’ (which is what the biopsies next Friday the 26th will be looking for) which took me to endometrial cancer and I have two symptoms. The inexplicable and STILL continuing main symptom despite the days of the tablets the doctor gave me to stop the flow, and the urinary symptom.
It’s like before the mammogram where there really WAS something. But like it, I am hoping it’s again, NOT cancer. I admit that for the first time, I’m really in a hurry to do the surgery. If it wasn’t for needing to be off Enbrel for two weeks, I’d have done it this week. I’m really anxious. My heart has been working harder for a while now according to my Apple watch. I also have wonky blood test results taken during my hospital trip on March 1…I want to get past this hospitalization so we can continue fighting my normal enemies. And find out if this Saturday’s blood tests -taken for today’s rheumatologist visit-show improvement. My March results were WORSE than ever! And I’d been on my Enbrel fully since January 25. So it was disheartening. My friend and I really hope it was just a blip and all is improved again. To have abnormal numbers that had been fine before, and numbers that have gone way worse than the bad they’d been…)
I was really touched by the sensitivity shown by a friend whose baby died in 2016. It was how he stated that he can’t get over the grief but his wife was “hit harder (obviously.)” It’s that understanding that I love. He gets it but is real about his own grief. His sensitivity is not common. I have seen some men not understanding that it does “hit” mothers of deceased children differently.
On that note. It’s also interesting how his wife is just in shock and horror over everything going on in my life. When I compare my lot with their… Her husband was our groomsman at our wedding so got lots of time to know my family and my in laws too, as one took photos on our wedding day. So I gave them a crash course in everything that has occurred in my life. Kinda. She was horrified. She-who went through the worst grief imaginable- also, like a friend of mine, feels like all of this is too much. The lack of support from family, the challenging family life here at home, the lack of help when our dear helper isn’t here, the unkind acts committed despite how kind an selfless I try to be, my declining health..and she doesn’t know about my upcoming surgery… She said it was as if the devil is trying to just get me down so he’s throwing every single thing he can at me and it’s too much, she wants to pray for things to ease up on me despite how I seem to be accepting of the crosses I bear.🥹
Speaking of crosses. I was wondering if our creator of this magnificent art installation😉will ever be potty trained or if she will remain in diapers forever.
Her dad then told me about a colleague who has a friend with a 16 year old autistic son. He is also non-speaking, not potty trained and cannot walk. Or does not walk. The positive is that he CAN manage school, so his mom gets a bit of a mental break, but sadly, school has brought no gains whatsoever for him. For my husband, it would be worse if our angel was in a wheelchair. I guess so. But I wouldn’t mind if she could find a school TOO! 😉 And I’m mean all of the little four, not just her.😅
She does repeat things she’s heard on video. And randomly shouts out animal names. Or names the foods she wants. And after prayer time on Friday, she suddenly said, “Wow… It’s time to pray.”🤣🤣🤣 I’m telling you, she’s trying to construct her own sentences that she’s not heard before! Good first start!
This girl who was nervous and scared of people… We have cleaning help three days a week. And yesterday was her day to come in. While I was sorting laundry, she told me that she’s found our girl not eating so she offered to feed her. Our girl took one mouthful and decided that was enough… But she did tell aunty, “Good job!”😂😂😂😂❤️❤️
We celebrate every word. It’s hard won. And still not consistent. It’s not like the list of words we hear is growing each day. What she said yesterday will still not be heard again for months if ever-unless it’s a request for food.
This video made me smile. Just seeing the hug and the held hand…It calmed my fears. The day I go for a consultation -at a not very close by hospital- to discuss my elbow surgery is the day both teens will be writing a Business exam. (I feel I’m ready to go write their Business paper myself because they’re both doing it so I’m marking double the number of Computer Science and Biology papers!! So! much! marking! My SI joints do NOT approve of the strain we are putting on them with our school work! I need a huge raise!) My husband will try work from home as he will be in the country that day, but these four need mega watching cos they scatter all over the place and they don’t have a sense of danger, so now that we know our angel is ok with her, I know she won’t cry and run away when it’s diaper change time.
And that..is a relief.
She got into the floor and lay on her tummy…She usually does that when shows or socks are different to her norm and she thinks it’s cool.
I love the energy and activity. So yes, no school for me, no hearing her say, “Mommy” but also, thankful for the ability to move. I don’t know if the young autistic teen is frustrated that he can’t walk, but I think as a mom, I’d be sadder on his behalf. And it must make toileting and bathing more difficult.😔With my bad bones, it would be torture. I can’t even change her diaper without worsening my pain. So yes, I’m thankful for her walking and running and spinning.
I’m in hell. AS pain getting worse each day. I quit using my pillow earlier this week as my neck pain with it- as flat as it is- was too much. It was then that I bitterly remembered how the rheumatology was surprised that I “still” can move my neck. The bone scan did show arthritis there and in other areas as mentioned, but I had managed to forget it except for when I’m washing my hair.
But this week…Maybe it’s also the cold weather hitting us. I’m limping. My SI joints are aching deep inside. I could go on and on. Let’s just say I woke up with so much shoulder pain that I don’t know now if I should try the pillow again to reduce pressure on the shoulder. But given my hands and knee were also swollen and screaming… It’s not the lack of pillow. My injections under CT guidance will be next Friday. See my rheumy on Tuesday where I will tell her that we are not making any progress with the fight.
Blood tests done tomorrow that she will need. Ahh, the costs!
But…As bad as this morning has been, waking up in the worst pain ever and with my right side swollen and stiff and more painful than the left, with yesterday having included my begging the children to, “please let me rest for a while!!”when they came looking for me, my forcing myself to cook and do laundry when really I felt like my body was in revolt and I needed to lie down, I will mention some positives.
The friend who totally understood the ramifications of the next operation. Who hates the constant pain I’m in and was teary not only about that, but my one autistic child’s academic struggles. I am grateful that someone can sit in the reality. To think, “Hang on, surgery again!??? And the procedure sounds…” and “What about the teens’ exams, when do they write in relation to the date of the op?”
It is not nice, having surgery after surgery and to have that also felt by others was refreshing and appreciated. Especially when it means I can’t fight the stupid AS given I have to take a month’s break due to surgery and there’s still elbow surgery after this.🥹(I want to schedule it after my teens have finished exams because I won’t be able to care for the younger children with one hand only and a broken body to boot.)
I am thankful for Sunday National Benchmark Tests. I mentioned to three people how my son said they are all written on Saturdays (for University of Cape Town application purposes.) But one sent me a list of Sunday dates from last year and I knew we’d be ok. I googled and indeed, there are Sunday dates. When my daughter then went onto the laptop to apply, she very easily saw the options and chose a Sunday date for the tests. And then my son did too. July 7, 7:30am.
I’m thankful that though we can’t fully enter my angel’s mind and she can’t tell us what’s in it, there are moments of connection. Where she pulls me to whatever creation she has been working on and wants me to sit and watch her as she keeps working on it. It’s hard, balancing everyone’s needs- educational and emotional while trying to be good to myself. I would love a full time nanny and a cleaner as the doctor said this week. But for now, I’ll be thankful for moments of connection. And it also makes me even more thankful for the ability to communicate that I had taken for granted with my other children.
These things I’m thankful for today are all ‘minor’ in the great scheme of life. But the major things like health- are under attack. So I will be thankful even for the small things. I know life isn’t a chess game where God moves things around for our benefit so it wwwns trite to thank Him specifically for tests that happen on Sundays as if He orchestrated it. But I am thankful that things worked out.
Also, the faster you put the needle through your skin and into your body, the less pain you feel. I felt NONE this week and I injected super fast. We won’t mention the actual medicine when it enters.
Hint- The woman in the Bible who touched the hem of Christ‘s garment.
Since my uterus misbehaved and got itself into early menopause, I’ve not been able to control uterine bleeding. I go on the Pill but it’s dangerous to do for long and as soon as I go onto the placebo, the long bleed starts. I try stay on the hormonal pills and skip the placebo- pharmacy won’t let me. “It’s too early… Yes, I know the doctor doesn’t want you to take the placebo pills but the system won’t allow us to override the timing.”
Try Mirena implant in my uterus. Bleeding continued on and off for four months anyway. After month five, I made an appointment and got rid of it.
Tried Activelle- an HRT- worked okish but ..bleeding continued for four months. See the theme? My hot flushes were disappearing though.
Oh. Did I mention the side effects? I think I did do so in another post, but let me repeat them for this post. No libido whatsoever, discomfort during the acts, terrible hit flushes- “Mommy, why are you sweating so much?” And waking in a cold, wet bed that my sweat soaked.
Then tried a different birth control pill. Thrush. Ugh. Off I went. Tried a different HRT. It was ok for the first four months! Only four days of bleeding. And then suddenly, 23 days ago- it began and has not stopped. Longest bleed since this all began.
Next step? Medication to sort it out. And surgery. Radiothermal ablation (burn the uterine lining to cause scarring which will hopefully stop the bleeding) but first a hysteroscopy (camera to see what’s going on inside) and biopsies of different areas of my uterus for testing-ovarian and uterine cancer come with bleeding in menopausal women… And then the actual ablation and then another scope to make sure nothing has gone wrong (like burning a hole through my uterine wall) and then we wait and see.
Day before my 21st wedding anniversary. Not that my husband will be here till the evening of the anniversary anyway. Traveling overseas for work…
How do I feel?
Scared.
The thought of them burning a hole into me isn’t exactly a comforting thought. But it is one of the risks.
The thought of ‘BURNING’ me is not a comforting thought!
Having to go off Enbrel AGAIN is not a comforting thought! I did my last injection for the next four weeks today.
Of course, it COULD be cancer. But I’m pretty confident that like so my other biopsies and tests, this will prove to NOT be uterine or endometrial cancer.
And if the ablation doesn’t work to stop the flow- total hysterectomy.
That’s also not a comforting thought. Have you seen the hectic obesity and heart disease death stats after hysterectomy?
Not comforting at all.
I would really love a break from this life and body. Just a few months in a healthy body…If wishes were horses..
Instead, I have to ask my pulmonologist to give the anesthetist my lung function report. Talk about complicated body!
I’m thankful for a sisterhood that understands and cares. I’m nervous but hey, I haven’t died yet so I probably won’t.😉
They said I should write a book 