I always used to not get it! Wow, that was grammatically messy. I never used to get it when they would say AS is worse when not moving and better with movement. After all, the more pressure I put on my AS joint, the more my leg buckles and a sharp pain shoots through and I cry out.
That doesn’t happen when I’m lying down!
Today I finally got it.
I almost didn’t get out of bed but..you know..they clam that CHILDREN NEED A MOMMY. So I got up. Almost instantly, the excruciating “Why am I still alive” all over body pain disappeared! It was now more specific areas that hurt. My SI joints ten minutes into a walking exercise session, my fingers which I out gloves on, and my head and neck.
It still sounds bad, but it is far better than the all over body pain. I really thought I’d have been dragging myself around and wanting to sink into a puddle and just cry. But I don’t. Not when I made myself get out of bed.
Now I understand the whole “Move, you will feel better” trope. Except when your joints are damaged and the arthritis is in your joints, it’s indeed that you will feel BETTER, but definitely, not OK.
And that’s ok. I’d rather feel this than the pain I felt before I got out of bed. Scary how we swop around the type of pain we’d ‘rather’ feel. Scary and sad that we (those in my shoes) have not yet reached the, “I have been great but then a flare came up” stage.
It’s not even funny. I have been getting headaches for the past two weeks. It’s only this morning that I realised they coincide with my increasing neck struggles. Whether I take the pillow away or not, my neck is suffering. The night was bad and my headache is back. And I finally clicked that they are linked.
Cervicogenic headaches
I’m considering taking some of the first tablets I tried-sulfasalzine. Just to see if they at least reduce the pain and swelling and stiffness in my hands, fingers, knees, foot. I feel like I’m wearing hard knee pads or.. like I’ve got concrete in my knees. I don’t have many, and you have to start on a low dose because of the bad side effects, and it takes months to work. But I’m desperate. I will take it slow because the side effects were horrible and hope. I don’t even know what to hope for.
I have been finding solace in AS groups where others come along and post their woes. My South African group was full of posts by people whose meds are working so occasionally had flare ups but were generally under control. The larger groups where there are many of us (Over 7000 while the SA one had less than 1000) have been a lifesaver. I told a ‘brother’ that I feel like giving up. But I can’t. And just a day later, someone had posted, “I don’t suppose giving is an option, is it? Because I really want to just give up. I can’t take this anymore.”
I get you, sister!
And so, I go to the groups. But even that is not helpful. We are stuck. People here think America is the land of plenty, but they have plenty troubles too. People whose insurance denied them the biologics they need. People side insurance suddenly stops paying for a biologics that has been working perfectly. It’s not that amazing there. Americans too, don’t have it all. Nobody does.
It’s perverse, maybe. It sounds wrong, perhaps. But when I can only feel the disease getting worse, I am grateful that I’m not going through it alone. You have days where loved ones focus only on their issues and don’t even ask how you are. I go to the groups. I see someone in my AS shoes tell them, “Same here! I’m sorry!” And then I feel seen when replies come.
I just wish there was a group for “Homeschooling AS moms of autistic children.” I might have said that before, right?
Someone posted that they don’t want negativity, only positives under their post, people must share the things that help put them in a happy place. People spoke about their children, their dogs, their expensive adjustable beds, how grateful they are that they’ve found biologics that are working for them, how they have time to read lots because of being stuck in bed resting all day. I should be so lucky!🫣 That was one post and set of comments I couldn’t relate to. Yesterday was a hard day where you couldn’t ignore Autism because she caused lots of suffering. I was praying hard to survive till night. And resting that both girls would sleep. Both are having increasing sleep problems-the twins. It’s hard to handle increasing pain when you have increasing parenting struggles. I had no positivity to share. The replies opened my eyes, instead, to how hard my life really is. How alone I am. It is VERY rare to have multiple neurodivergent children with learning disabilities while this sick too. Hmmmmmm
And yet. I’m not angry for trivial reasons like some meme that shared research on special needs parents started. I don’t snap at my children. I don’t lose my cool. So, I must be’ ok.’ More ok than I thought. I could feel or act worse.
There, I managed to pull a positive out of my ‘chronically yours’ life.👀
I pulled another one out just as I was about to ask my girls who always ask how I am, for prayer. My husband left his car behind. So, my son can go drop his sister off for her exam and then return. I can then still have my car for any emergency or anything that pops up, and then I will go fetch her. I’d been about to type to them asking for prayer as I didn’t know how I’d survive the drive to the school which is NOT close by, the long wait-over two and a half hours-and then the drive back in peak traffic. My staying home alone wouldn’t have helped either. Yesterday’s ’cry a lot’ twin is too heavy for my bones. Getting her into the bath and changing her diaper etc would have been too much for me. But now I have an option to make things a bit easier on these here bones. I might not be able to stay in bed all day, but I reduced the extra suffering that would have been inflicted on me.
I’m seriously going to use the last three injections in my fridge!
Medical aid finally wrote today. I’d been waiting and waiting and had planned to email the nurse to ask what’s up.
Well, what’s up is NOTHING. Medical aid wants a letter of approval from the rheumatologists’ panel, and information from my doctor about what medication I’ve had and for how long. THEN they will decide if they approve or not.
This was not the email I thought I’d be reading when I opened it. I can’t even say I’m waiting again because I don’t know if the panel has met. I don’t know when they’ll meet. I don’t know why my doctor didn’t send the info together with the initial application anyway. I’m disappointed, folk. I hurt. I hurt. I’m getting even less sleep than ever. My neck, my shoulders hurt at night on top do the usual back and elbow pain… Today, I drove my daughter to her final Biology practical exam prep session and the entire way there and back I stopped myself from telling her that my foot hurt every time I moved it to brake or accelerate. The rheumatologist had felt it even before I consciously suffered from it-the damage and swelling in the front of my foot where it joins with my leg. I have NEVER had that area that sore before while driving, driving was actually ok for the foot and only bad on my SI joints and lower back.
Well, all bets are off. It’s like Satan has slowly been letting out bits of the fiery pit and sending the flames to me and now it’s getting hotter and I didn’t know it could. I know I always wonder how BAD someone’s pain is when they complain. It’s not like I can feel theirs and they can’t feel mine. Maybe compared to mine, it’s virtually nothing. Maybe it’s the same, but telling me you’re in pain ain’t enough. Is it keeping you awake? Can you ignore it and it remain in the background of your day?
I am suffering incredibly especially today after the long drive to the school (Let’s just say they were all shocked to find out where we live when my daughter mentioned it, and wondered about heavy traffic coming in), after waiting for class to finish, and the longer drive back. (Longer due to traffic.)
I already can’t sleep- pillow or none- because my neck and shoulders are fully in the mix now, not only my elbows, fingers and si joints.
I want to start treatment. I want to be better. I wanted to do a movement activity with my little ones this morning but couldn’t, I would take a step and leg would give way and an unexpected bullet of pain would streak through my SI joint and cause me to yell in pain.
I need the medication.
I don’t know when the panel will meet. I don’t know if they’ll agree that I need the mediation. I don’t know when my rheumatologist will do her part.
I just know that I feel like I’m losing my mind.
Please God, help me. I don’t want to buy a walking frame because of my leg that suddenly goes on a break when I need to use it. But I don’t want to get used to limping and shouting out unexpectedly. I don’t want that to be my norm. I’m too young for this. I can’t do this. I will go insane. So, please help me.🥹
And no, there’s a reason we are stopping the injections I was on. If I do end up desperate (I still have till Saturday for my “No injections of biologics till two weeks past surgery” rule to take effect, then I’ll inject and be worried that it will again reduce my immunity TOO much and I’ll catch a sickness and then I’ll get approval but be too sick /still sick and unable to start. Not that I know how soon my pharmacy will have it. They don’t stock biologics as not enough patients have them to justify them buying them without knowing there will be a patient who needs them. It took two weeks for the Enbrel to be in stock at my closest pharmacy.
What do I want you to be aware of?
The patients who are so desperately in pain, who have ‘failed’ their treatments and know that tomorrow will be even worse than today. I looked up voluntary assisted suicide on Sunday. Someone with AS did do it. He was in Canada. His loving wife cooked lovely soup for his last meal. I want you to be aware that there are some of us who are like that. So desperately aware that only death brings release- certainly not night time no matter how many pain killers are in our system.
I haven’t reached that stage yet. I’ve only failed one biologic. But I know the PAIN and wishing for death so it finally ends. We aren’t only the successful people like Whitey Basson for whom AS is almost meaningless. We are ones who feel like we are dying daily, (And whose lungs actually are.)
I shared the above this morning in the SOP Reading Club that Claremont SDA Church has formed. I hope it will be a blessing to anyone else out there. A blessing and an encouragement.
Jesus was never cold and unapproachable. The afflicted often broke in upon His retreat when He needed refreshment and rest, but He had a kind look and an encouraging word for all. 4T 488.1
Good morning🙏🏾
This reminded me of the patience mothers also ought to have. I recall from AH how “frequently the call of mother, mother is heard…” and the mom has to stop whatever she’s doing and patiently and kindly be interested in what interests the child or care about their little woes even if in mom’s mind, it’s nothing.
This is so hard especially when sick. Like the disciples, I’ve even heard my older children telling my one twin 4 year old daughter to not come when I’m resting, but she will insist, “I need to see Mommy! I want to talk to her.”❤️🥹So I often yell out that it’s ok, she can come into my bed.
When I told my children that my recent appointment proved that my pain was truly increasing as things were getting worse, my 17 year old exclaimed, “But you’re always so cheerful! I didn’t know! Mom, you really don’t need to force yourself. It’s ok to rest more and to not be so happy.”😅
That’s what matters most. That THEY feel seen, loved, cared for and secure. I want them to see the Saviour’s love through me.
I will apply that to whatever we are involved in and in whatever sphere we are in. May we ever be patient and warm as opposed to “cold.” Welcoming even when we need “refreshment and rest.” May our “they” that is watching us see Christ’s love and patience through us.
Yesterday was awful. I am usually awake by around 5am to study God’s word-on weekends. And during the week it’s 4am. (Mainly because my husband wakes at 4am so he can also do his study before going out to run before work.) It gives me time to try get the stiffness out my bones so I can exercise a bit.
So, I woke up. I couldn’t shake the pain and stiffness. 6:20am I was out the bedroom and moving but still, the stiffness and heavy pain persisted. You know how AS includes swollen bone marrow? It’s as if every single bone in my body was struggling with it, not just my pelvic bones. (Maybe they were! I just only have had MRI on my pelvis and that’s where we know for sure my bone marrow is swollen.)
By 8am, I was struggling. I struggled to take bedding off the bed. Then I wanted to lie down. On the unmade bed. I didn’t have strength. I am now always using the little ones to at least put the laundry into the washer for me- I did two loads yesterday/ usually I do three. We are eight! We have a lot of dirty clothes especially when there are ADHD girls who soil their clothes daily. Badly soiled. Who forget to wear the T- shirt they put paint on that I now keep as their ‘eating top’ so their clothes don’t get food on them. My poor nine year old eats like she needs a huge bib. But I’m too busy to remind her at mealtimes to put it on before she starts eating.
I did go grocery but there too, I struggled. I had to lean against the till behind me. My word, yesterday was horrendous and I’m still unable to bear weight on the worst leg even now at 5:16am. The pain was indescribable. Just folding four pieces of dry laundry killed my shoulders too. I wanted to weep. What is the point in being alive if I can’t do much?
I’m SLOWLY tightening my nine year old’s locs. I just can’t stand long and the fatigue is all encompassing. So, there I was in the evening standing doing her hair before evening worship. I’m in the left bottom corner of the security camera.
I was weeping silently. Before this, we’d been listening to One Voice singing I Can Only Imagine. It was already emotional. Just to imagine myself able to RUN to God, able to kneel at His feet without pain, imagining all of us in the family-me and the children-made whole…
See, I’d made my for old pictured at the top of this post, cry. Like her twin who’s hated us touching her hair forever, she’s now also not into her hair being washed. But it has been too long. I started preparing her last week for a b hair wash. She kept refusing. My teens had said they’d do the hair so I don’t hurt myself. Except my poor angel was too stressed and was crying and her sister just couldn’t do it. I went into the bathroom, told her I was just going to wash her hair with plain water, it had been too long, and just water, no shampoo THEN water. (Hey, anything is better than nothing.) The tears rolled down her face. We have those little rim cap things that ostensibly prevent water flowing into their faces (doesn’t really do that very well but it’s better than nothing) I asked her sister to hold the face cloth over under the rim of the cap thing so no water rolled down into her eyes and just ran as much water as I could over her hair, squeezing out and scrubbing the scalp as much as possible. But the tears came. “Mommy, why are you doing that. Please stop, Mommy.” It was awful! I felt so sad for her.
I could not wash her twin’s. I was in too much pain by then. So the teens will do it in batches-mostly really just using a very wet cloth and shampoo for her because she’s even lied about to handle her hair being touched,
It was a combination of pain, heartache and hope that led to my secret tears as we watched. I truly needed to feel raised because I was down. It was emotional, watching my not very talkative angel standing mostly still sound while the songs were playing. She too feels the emotion in the songs so doesn’t do her usual racing around.
I watched videos of dads talking about their autistic children, the dreams they had that they’ll never be able to fulfill. Playing with their children, playing ball…It was truly cathartic to cry as they too wept. I get my support and validation off my feelings from the emotions other parents are feeling that mirror my own. The suffering when the world hurts the child- light, noise, people, whatever… It’s a terrible worry, not being able to make life easier for them.
And so, I wept.
Usually I go hide in my room at prayer time as sitting with everyone during worship calls my daughter to come sit on me which strains my bones. Add the womb pain and I definitely haven’t gone to pray in the evenings. But every evening, she’d come running anyway, insisting that she has to talk to me.😅So I decided to stay so she doesn’t feel the need to burst into my room. It worked. She got her fill of me and didn’t follow me into the room.
And my heart! She kept trying to sit staring at my face while hugging me with one arm around my neck. It felt kinda weird too, being stared at while singing!😝But it just showed me that yes, I’m unable to do as much as I would have liked, yes I had even googled to see if anyone had ever done assisted euthanasia due to AS suffering (found one in Canada) but I couldn’t leave this world yet to rest even if I wanted to. So I took a photo.
My children need me in whatever state I’m in. I hope we can all have the energy to bear our children while sick. To love them when we too need loving and nurturing. She doesn’t care that I didn’t finish putting her clothes in her wardrobe, that I didn’t finish ironing her underwear. (We have spiders on the washing line. Almost everything gets ironed. More so after Ammy’s terrible hospital admission due to an infected spider bite) She just wants me. And I’m here. That’s all she needs. And so while I wait for release from this suffering, I wait knowing my children would prefer it that way anyway. Waiting. Not yet released….
It has been an interesting day. Typing this at 20:56. My husband asked if I’m “at peace” with my worsening situation. See, yesterday we went for a walk and he had to stop me. Make me stop and realise…I was panting. We were walking slowly (too slow for my liking!) yet I couldn’t converse and breathe normally up that very mild incline. So. In light of that new situation, yet another sign of declining lungs, he asked if I’m at peace with disability caused by AS moving forward, If I’m ok with never being able to hold (carry) our future grandchildren when we see them. I told him I don’t even know that I’ll be alive to see any grandchildren anyway.
It was a sobering day but I didn’t feel sad.
So this next event brightened up the mood considerably!
Here’s the thing. I talk to my girl all the time. The males and my teens don’t get why I’m so insistent on talking to her. Slowly, short sentences and using lots of repetition. The teens don’t get any feedback from her, and they assume she barely understands what they do say. My son said as much when I asked him if he’d warned our girl in advance that our new helper star would be caring for her and her three siblings while I took him and his teen sister to their exam venue.
He replied grudgingly. “Yes, I told her, but I don’t think she understood anything I said anyway.” I told him that that didn’t matter. He just needed to keep using short sentences and speaking anyway! On the way to town where their exam venue was, I told them about an autistic who started speaking very late. That’s when I found out my son has given up. He thought my daughter had no chance of ever using speech. Ever.
I think my husband also felt the same. This evening, while they recited the fourth commandment, our girl chimed in, “Six days shalt thou labour and do all they work…” As clear as a bell!! A very loud bell! Her twin sister- who usually keeps quiet- decided she didn’t want to be left behind, so she yelled the rest of the verse loudly!
It was crazy! It was a cacophony of sound! It was BEAUTIFUL AND GLORIOUS.
It was a fitting way to end the day while thinking of how my husband saying, “So…Maybe there is hope for her!” I had thought it was obvious to him that there’s always hope. Till the day she dies, I’ll hope. ☺️
I know that it’s wonderful that she recalls the words and says them in perfect timing. It’s amazing even if it’s pure echolalia.
I’m not sure what to do. About 19 years ago when we first moved to this area, a White man (my husband’s boss, actually), told us it’s very closed up. People like us aren’t exactly welcome. And I’ve certainly seen it in some groups.
But I never figured that it would mean that they don’t want our money either. Which it should have. Look at how hard it was to find a rental because people didn’t want to rent to Black people. Not even to sell to them! What apartheid nonsense is that!?
I’m stuck. Terribly stuck. I’m in increasing pain. I can’t drive far. But our occupational therapy options are nonexistent. One didn’t reply when I told her we couldn’t afford her services but would contact her when things improved. No acknowledging that she got my reply. Plus, she talked down to me like I’m a dummy. But I had been willing to ignore it for my daughter’s sake. Also, she at least had the grace to admit when wrong. (I’d told her that I believed my daughter had a visual processing problem and she disagreed with me. But then while doing her assessment, a visual area was touched on and it led to her adding a visual assessment that indeed confirmed my fears. But.. No human ‘soul’ in her and no written report after the assessment.
Another one, she would want to be paid YESTERDAY, but would make us wait MONTHS for the report. Hardly fair! And always an excuse, no apology.
I contacted one. This one, I’d actually been sent to by our son’s neurologist. But back then, this OT gave me to an OT who didn’t even have training in what the neurologist had pointed out needed therapy. She gave me to the therapist above who twice, took MONTHS to give reports🤦🏾♀️I emailed this year asking for help for my daughter.. silence. Given her disinterest years ago, and the disinterest now, maybe she only wants clients that look like her.
I contacted another one. I told her I was not available on Tuesdays (only three of them, specifically) so we need a different day to start the process if we were to begin while my first daughter is using more Tuesdays to be taken to Somerset West. She suggested..TUESDAYS!! I replied that the next Tuesdays were out.
Silence. And even the Tuesday offer came because she had gone ghost on me after I replied to her about the children and asked for a session! I received no reply to my request. I ended up re-sending my email that I had sent. And to that, she chose a day I had made sure to tell her I couldn’t take 🙄
I truly don’t know where to look for help for my daughter. Her executive functioning skills need improving. Same with my son. They need those foundational skills.
I am so, so anxious! The teens got A and B for their first set of AS level exams and now they will be doing their last set. If they pass, they’ll be DONE! I can’t picture what that will be like.
They’re extremely sure of themselves while I’m nervous. Very nervous! They haven’t flunked any past papers that we used for practice, but my son struggles with Comp Sci paper 2, only getting 50’s till the last paper he practiced. That was with having found videos from his previous year (one level /grade down) to make sure he knew the foundational principles before I got him more of this year’s AS level videos and it helped- so he claimed. And my daughter didn’t do super well with Biology 1 at the start of our prep season. Hoping they do as well as they did with their last practice! I’m nervous, did I say that??
I hope we are done. It will be a long time till we find out! August 20 something!! In the meantime, we continue with our university applications. And she will also apply through Mediclinic for their nurse training too.
Life is good.
I am limping a lot these days. My respiratory rate is too high. As in, “You are sick” high. It was like that before my bronchitis, now just worse. Normal is 16-20. Mine has even reached 30 on some days and this is while asleep. Or just sitting still. My average is 25. I’m breathing faster than I should be. Which makes sense. Your lungs do that when they aren’t passing enough oxygen to your blood, which my diffusion test already proved anyway.
My blood oxygen once went down to 82% this week. Which I wouldn’t have known till my husband traveled for work and used his ‘pocket’ money to buy me an Apple Watch that measures your blood oxygen levels.
So, I’m still dying.
And my bones are bad. Real bad. Can’t find a comfortable position. And I haven’t heard back from the rheumatologist about our start date which matters because woohoo!! I don’t have to plan surgery yet! My hand surgeon said we will give my nerve four more months before we operate. He is hoping it will settle down. But if not, the surgery will be “bigger” and worse. Which I already figured
Life is good.
I was limping along coming from the orthopedic surgeon when I told my friend about the good part. She and I have always mourned the twin bond my very talkative twin, Neilo, wants to have with her twin sister. (By the way, she doesn’t want us to wash her hair. Now I have two four year old girls who don’t want their heads touched. HELP!) There are times Neilo just wants to hand her something (not even a hug or holding her) and she will refuse.
But in the bath, Reo slides forward till she’s almost squashing her poor sister.☺️ And yesterday she happily allowed Neilo to pour bath water on her calf. Neilo was so pleased that my heart almost burst 😍
Today, I caught them taking spoons for their breakfast. Both girls standing there with the kitchen drawer open. Each had more than one spoon in their little fists already! But Neilo took some more and handed one to her sister, which she took and kept close to her chest. Man!! This is what brings joy. I want to live long enough to witness 40 more years of this!
And you know what? Yesterday as I hugged R in the kitchen. She hugged me. I knelt down to squeeze her tight and she rocked and hugged my head tight. ☺️ She played with my hair, she was so loving. The moment was long. Who needs spoken language during such moments anyway?
I don’t need to hear “I love you” when I can feel it.
And so, I carry those moments in my heart. Nothing can take them away. I may lose my breath walking up to my car, but I’ll never lose that moment.
Life is good.
And….For the first time ever, I left the four little ones in the care of someone else. Someone who’s not one of our family of eight! And it went well! My minimally talking angel laughed and laughed at her. And allowed her to change her diaper while my very talkative Neilo was in a rush to get us out the house so she could be alone (with her three siblings) with Aunty V. 😅”Bye, BK! bye Ella! You can go now!” I hope it works out. Then at least next year I’ll have a help when the teens go to university. Holding thumbs!
Oh, I didn’t tell you? We felt the teens should focus on school during their exam season, so I hired someone to do the housework last month. Reo loves her. That’s our litmus test. If R loves the person then we are fine because she’s the hardest to please. Also, she herself loves the children and doesn’t treat R like she’s got no brain. (Thinking of the woman I tried who would walk right past her or behind her as if she’s a chair, while smiling at, or talking to the others.) This ‘aunty’ understands that behind the ‘non-speaking autism’ is a normal little girl.
I came home and she was laughing and laughing. She had laughed when the aunty changed her diaper too. And to think how worried my eldest was. He was extremely stressed about my leaving the you n er four ‘alone’ with aunty Vi. He thought our girl would panic or run away. But nope, they had the typical hiccups we’d have, and then got along famously.
It’s my war cry for today. I’m figuratively on my knees- heart screaming and my invisible eyes weeping. “I CANNOT DO THIS!” In fact, yesterday morning, I mistakenly said it out loud, “I can’t!!” And my son, sweet Micaiah asked from another room, “You CAN’T!? What can’t you do?” Oops. I hadn’t realised I’d spoken out loud. So I explained that my fingers weren’t obeying me. I couldn’t open the blister packet and get his tablet out. At the same time, AS fatigue was so strong that I felt I had no energy anyway.
“I can’t!“
My shoulders are steadily getting worse. I handed Amarissa her tablets while I gently raised my arm, and we both heard my shoulder, “Crraaaccckk!” And it stopped moving. For a moment, my arm wouldn’t go higher.
“I can’t!”
Today, I had so much I wanted to do. But just bringing down and carrying bits of laundry (No lifting heavy things for two weeks after surgery) caused lots of uterine pain and I had to clamber into the bed-womb and bones all screaming,
“I can’t!”
There’s a spot on my shoulder where I rub, and I can feel the sore spot. It’s not in the joint. It’s not where the night pain is. It’s just purely along the bone. When I turn my back, I feel my neck creaking, getting ‘stuck.’ I walked into the pharmacy at 9am, hours after I woke up and yet my legs were still stiff. Not normal. I walked as if made of… I don’t know. Like a fictitious zombie would. I felt shy. I don’t want pity. I don’t want to be noticed. It’s as if my leg didn’t want to move. Didn’t want to obey me. It was telling me,
“I can’t!”
I can say for sure that my right SI joint didn’t benefit from the infiltration. They’re charging us R2500 for that!🫣 (Oh, I’m mentioning the prices because there are people I know who are saving up to do things privately but don’t have medical aid. I’ll be transparent.) I also owe for my blood test. My husband thinks I might even be worse. Yet another reason to never try again!
Speaking of blood test. My kidney function still says kidney disease stage 2. No improvement there. It actually decreased by 4 units. But my liver is still fine.
We have a slow burning panic going on. It’s not only me. My husband is also itching for me to restart trying to slow down this stupid. He was asking what the hold up is, asking if the they can’t just write the script and we see if the pharmacy would refuse to order it without medical aid approval. I had to go collect some of our chronic medication on Sunday so he drove me. My pain and sinusitis meds and my daughter’s ADHD meds, heart meds. Though I had picked the option to STOP the Enbrel, they’d ordered it anyway. He was tempted to pay for it so we are “at least trying something while waiting for the new medication.” But I still have three in the fridge. Surely medical aid will have agreed by then? Surely the panel will have sat by the time six weeks is passed, right. (If I need arm surgery, plan to give myself two weeks after the other op before going in again for the ulnar nerve op. And then after that op I need to wait two weeks before I can resume. Surely they’ll have approved and I’ll have ordered the new injections? If not, I WILL use the Enbrel in my fridge while waiting. This disease doesn’t wait. I saw yet another article about people dying because of crushed throats when the disease bends them over. I’ve seen people not even knowing this disease can do that- make you bend and unable to move your neck. Poor woman was asking in our web group why she’s leaning forward and unable to look up or to the side. 🥹”If it’s part of the disease “or something else as the forward weight makes her stumble and fall forwards sometimes. I wanted to wait till after the teens are done with exams then have my ulnar nerve surgery… But the numbness in my hand is too noticeable and the pain, I can’t ignore it. Like what AS does to bone, once your muscle is wasted and useless, that damage cannot be undone. And I am losing my grip strength. I’m also hoping that for the first time ever, I’m wrong. I would rather go tomorrow and be told I don’t need surgery. Because.. that nerve pain is horrendous. Awful. Unbearable. And it took a year for my skin to not be sensitive as much. How long this time, when the surgeon will have not only released it, but actually moved it to a different place completely, as had been the actual plan last time? It’s another slow/ burning anxiety deep inside. This one, not even my husband knows about. I checked out some soft round pillows with holes on which I can try rest my elbow at night. If the surgeon says I’m headed for another operation, I’m going straight to the aisle and buying it and hoping my elbow will be able to be positioned so it’s in the hole so nothing hurts me. I recall my sad updates to friends who used to ask about recovery. How helpless I was. How no painkiller touched the pain. How even my own pyjama sleeve hurt me when touching my skin, let alone pressure off my arm lying on my mattress, or a sheet on it when on my side… I am dreading it… I am hoping he will tell me it’s all good. I still have last week’s surgery gas pain to deal with. Another surgery..? 😏
“I can’t!”
I have parenchymal bands in my lungs, the lower lobes are collapsed and my lung function is decreasing. When you look up “parenchymal bands” you find one article that says it’s mostly in end stage lung disease and another article that says you might consider hospice at that point.
What?? No way! I still have much life in me. Even if it’s not a good life. Body wracked by pain. Nights..My neck and shoulder scream too. And so, in the absence of any kind of relief from the relentless suffering, I looked for “I Shall Not be Moved.” I don’t care what God allows, like a tree planted by the water, the tree in Psalm 1, I will remain grounded and rooted in Him. Though I really feel like He is slaying me, though I feel the AS moving through my body and I can’t do anything about it, I will trust in Him. And I will not die soon.
(My lung function is dipping below 94 at night. It is going to 92%. Normal is alive 95-100%. When it gets to 88, I’ll tell the pulmonologist. We will need oxygen at that point.)
Still…I’m “on my way to heaven. I shall not be moved.“
Is it possible to ever get used to a world in which my daughter, R, will never ever answer a question? Never have a conversation with me? Never tell me something is sore, funny, yummy..? Is it possible that I will accept it in the next 20 years?
I don’t think so. Sylvester Stallone’s son is a grown adult over 30 years old and the son’s mom still hopes he will speak, converse. We can’t give up. I guess it’s human to hope. You forget all the other months and years of silence and hope today something will be different.
My angel…She loves sitting in her room arranging her toys- very specific ones- in different ways. She can spend hours alone in there. I go in…Sometimes she gently pushes me, asking me to leave her in peace. The other day she shut the door on her dad when he peeped in. Most of the time, she’s happy to see me. Still no, “Mommy!” but she doesn’t cry, doesn’t get angry. But also doesn’t let me engage in play with her or even next to her. If she’s playing with a set of blocks and I take my own set, she takes my set and adds them to hers. No conversation.
Sometimes it’s ok. Sometimes I’ve grateful that she pulled me to her room to go watch her play. That satisfies me all day long! But sometimes, my heart breaks. Yesterday, I took some pictures in. Just simple body part pictures. She wouldn’t look at any of them. Definitely didn’t repeat any word I used. I then took her doll and asked, “This is..?” She blurted out, “Baby!” Then I pointed at her bunny and she said, “Doll!” I asked her to touch the doll’s hair and she did.
Then that was it. No more engaging. She was back firmly in her world. No talking about feet, toes, no matter what I did. She used to love touching my toes when I moved them, and once suddenly shouted, “ Toes!” when I wiggled them. But not this time. That was our ‘conversation’ the entire day.
So, knowing she watches video and repeats what she hears on video whereas she doesn’t often repeat much of what we say here at home, I just decided to teach her a different way. Can’t wallow in heartache all day, can I? I have a child’s brain to try teach! And her twin sister will benefit too, learning from a South African accent instead of only hearing and relating the American one she hears when watching toddler videos.
I did this for the children here at home. Minus the introduction, of course. And dear readers, my silent angel giggled and giggled and laughed and laughed when she watched it!!!🥹🥹🥹
I may not be able to reach her in a typical way, but I can reach her. It was made for them here at home. Just something random to help them learn. Very specific for our needs – building vocabulary, using sentences and teaching a lesson- no running in the house! I cut the video, it was bad. But my very talkative twin is fine. (So much for the orthopedic surgeon who said she must not run, not fall for the next two weeks to allow her arm to heal fully!)
This is a different glimpse of our homeschool life. Needs must…
PS There are some moments… On Friday evenings, we say the Lord’s Prayer when praying. Yesterday, she met saying, “ Our Father…” before the roaster began, and during. 🤣 “Our Father…”
And this is why we don’t give up. Connections are forming. It takes years- we’ve said the Lord’s Prayer every Friday since the teens were babies! And yesterday was the first time she showed us that she ‘hears’ it… And so it’s disheartening in the moment, when she doesn’t look or seem to see it hear. But I pick myself up and keep trying. Why I keep trying to form connections throughout the day. Firstly, why not? And secondly- because I hope springs eternal. The sound of her laughter makes up for the sound of my breaking heart.
I really want to know. How do you know your SI joints are now fused?
A lady in our group had similar gynae surgery to mine and woke up with a fractured pelvis. They had not realised her joints were fused. The surgeon moved her leg while she was under. Yep, there’s that dignity where they now begin the less dignified stuff AFTER you sleep. I appreciated that on Friday. I slept before they even took the blanket off my legs. But in this case, when put under, you can’t scream in pain. And so, they moved her leg and boom, (or…CRACCKK!?)her pelvis fractured.
So I really do want to know…How will I know my SI joints are fused? I don’t want to wake up broken. Nor do I want to break myself by mistake. Let me run to the group and ask.
They said I should write a book 