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.)
The word “No” is very valuable. Children must never learn that they can have everything they want. She has already taken her nine year old sister’s doll that I gave her for her birthday – necessitating my buying a new one. And my angel 9 year old hadn’t even complained about it.
No.
You cannot have everything you want. Things belong to other people and they are for them, not for you,
A lesson her father tried to teach her today when she wanted congratulatory balloons he received yesterday when it was finally announced at his workplace that he had gained a new role. I say finally because we knew and were waiting for the official announcement so when someone at his office sent me the announcement, it wasn’t news to me but she thought it was- telling me to spoil him. I had already said my words of affirmation when he told me that the Board has decided what they had decided.
“No” has given me 50 minutes of screaming. She has thrown things around. Tried to break her cracker into multiple pieces. Has pushed me. Has tried to bang her head on the wall. Picked up the landline and threw it down. Has tried to bite her sister – the nine year old…
Oh my word. What a morning when my pain tablets haven’t taken and I just want to cry ANYWAY.
The positive is that the Endodontist was just as angry as I was at the dentist who refused to fix their non permanent crown. Its is the first time someone in the medical field got angry at someone else. And that made me feel better. Pity that appointment wasn’t today.🫣
PS. Peace has reigned. She’s doing her usual happy shouting. I wish my heart could recover as quickly. I wish all the physical stuff didn’t make me worry about the future… Next time, the phone might break. Next time, she WOULD bite her sister. Next time, she might push me over. Next time, she MIGHT fracture her skull. But for now…I focus on the now. Time for me to phone the hospital radiology department and book the bilateral SI joint CT guided injections. Ouch.
I’m going to send this link to my people. It’s something that bugged me years ago just out of principle-and continues even worse today. I might have even blogged about it before, I don’t know.
When I ask “How are the boys?” I truly am asking how your sons are. How their health is. How they are feeling that day. Mental health included. An answer like, “Tim isn’t great. His friends are mocking him because we can’t afford expensive brand cricket bats for him. He was complaining about the teasing , feeling bad that he’s already different from the others because we are a different race to him, and now he is less than, in his eyes,” is an answer. I now know he’s struggling. Adoption when you’re Black and your parents are White is hard. Having it constantly brought up, having other differences brought up, hurts when you’re just a little boy wanting to fit in.
That is an answer. So is my other friend’s answer when I ask how her children are, “Oh, the boy has been coughing again. The girl’s tummy hasn’t bothered her much lately.” That is-for me-a proper response to the question, “How are the children?”
But even years ago, telling me a milestone wasn’t an answer, I hadn’t asked, after all. I don’t ask, “So, what can your baby do now?” I know I blogged about the church mom who one day said, “*Pamela showed us last week that her baby can walk now. And look, my son has started…Walk, baby boy. And what about Bukhosi? Let’s teach Bukhosi how to walk.”
I told her, “He’s been walking confidently for two months already. But this is Sabbath school class time and so I never knew I needed to make an announcement!”🙄
Milestones are lovely-for the parents. But they aren’t what I personally use when connecting with others. I was super excited when my son started walking at eight months old but so what? It wasn’t some major announcement to anyone but his aunt who wanted to know how he was progressing. A church friend boasted about how she was a very early walker. But she’s not a very nice person. I’d rather she was that than an early walker.🤷🏽♀️
It’s even worse now. It started stinging when I’d take my now eight year old for assessments. We’d be sitting in the waiting room and another mom would be all friendly and conversational. She’d ask how old he was and then confidently state, “Poor you! He must be crawling all over the place and opening cupboards! Must be so hard to keep up with him, hey?” She meant well. But I was there because he couldn’t sit without support. Crawling was months away. She meant well. But it stung because it was a reminder that all was not well. It was the very ‘why’ for my presence there. To find out ‘why’ my son was not reaching milestones. Why he was so wobbly. Why things were bad.
Today, it’s even worse, being reminded of what is possible for MOST and the norm for most others. I have a nine year old who took her little sisters’ tongs to her bedroom and just snapped them. Broke them. I don’t know why. I find books in her room, pages torn out. I don’t know why. She laughs a manic laugh on purpose that sets my teeth on edge. Very loud and exaggerated. And I wonder, “Is this fetal alcohol syndrome showing its ugly head? I did ask her birth mom if she drank while pregnant on top of everything else she subjected my daughter to in the womb- the multiple abortion attempts that must have impacted her- and her response was, ‘Sis, I lived as if I wasn’t pregnant.’” It’s a concern. We see the psychiatrist on the 18th next month. This is money we don’t have much of, going down the drain. It’s things my children play with, being taken from them. And when I ask why she did it, why she damaged things, I get an almost irritated, “I don’t know!”
My very talkative twin has started smearing her stool everywhere. She has been potty trained. But this week, she’s gone off the rails for some reason and isn’t going to the loo. Clean ups are backbreaking and tiring.
I could go on and on. My eight year son makes no sense sometimes when he talks but expects an answer because in his head, he is making total sense. “But why shouldn’t I eat the muffin?” Yet there is no muffin and I certainly never said he couldn’t eat it (nor any other thing.) And he laughs when I ask what he is trying to say or ask about.
Yesterday, my not very talkative daughter hurt me. She was extremely upset but couldn’t say why. Even the words she was trying to say weren’t real words. It’s bad enough when she says ‘grapes’ then gets upset when I pull the grapes out because she actually meant to say ‘bread.’ But when it’s gibberish… “Pezel’ she will say. And she doesn’t mean pretzel. And there’s nothing specific she usually refers to with that name. So I’ll be lost. I’ll try a few of the therapeutic calming things we should try and they will fail. She will be angry. And things deteriorate. Yesterday, she threw a hard sippy cup with juice in it and it hit me. Hit my mouth. I told her, “No!” She then threw the other one, then her sister’s toothbrush then…And then herself. So I had to bend down to catch her before she cracked her head on the tiles. And my BACK!!
See, that’s the problem. I’m dealing with all this while not even well. I am living with many incurable conditions (even IBS isn’t something mild. I just don’t mention it because at least it won’t leave me disabled or dead like AS and my lungs.) It really is constant mental strain. Every moment my mind is either trying to solve a problem, wondering how to hide something, or causing me extra physical pain.
When I ask people how their children are. I mean it. I’m not asking, “What are your children about to do?” I’m not asking, “Where are you going this weekend?” I know the answers would only reinforce how I am alone (amongst my circle of friends) in my battles. But when I ask, people think that I want to know their movements, plans, activities.
I don’t. I really am truly concerned about the health. Mental and physical.
I’m the wrong person for the other stuff. I get reminded of what’s missing with every response that says, “I’m planning Tim’s birthday party. Sarah’s was last month..” Good for you. Your children can handle people, can make friends. Mine can’t. People cause them stress. Thanks for the unintentional reminder that our lives are very different, yours and mine.
Or telling me, “They’re fine. We’re off to ballet soon.”
Good for you. Your child has coordination and the ability to follow instructions. I’m breaking my back doing exercises to help my eight year old balance. Both he and his sister were asking me why they struggle to walk on a balance beam, why they keep falling off a straight line. But hey, nice for you that yours can dance.
I know they don’t mean to rub it in. But they do. They rub in every dream I had for my children that is an impossibility. Normality is not our reality . They remind me of every struggle I have and every freedom they with their typical children have. It hurt when my daughter asked why they can’t walk on a straight line. Seriously?? Even therapeutic activities remind them how ‘not ok’ they are. And that hurts my mommy heart.
And so, I will share this post. I know you mean well. But I’m the wrong person to share those activities or plans with when I’m not expecting it. It’s like telling me you’re going on holiday when I can’t even get my precious child to go to the shop. Nor could we ever afford a holiday nor feel rested with their challenges. If I was unemployed, starving, and didn’t even have food every day, would you tell me about the expensive cake you ordered for your husband’s birthday when cake is something I’ve not afforded in years? But if I ask you your plans for his birthday, then that shows I am ready to know that you’re eating while I’m not. And will celebrate with you in spirit.
That’s how it is when you tell me the oh so normal things your children get to do when I haven’t asked. Some days I am strong enough to bear the reminder that my life is full of disability while yours isn’t. Those days, when I’m strong enough to bear the reminder, I ask what your weekend plans are.
But on the days when I’m reminded of how limited Africa is for our special needs children, on the days I’m aware that I am only homeschooling special needs because I have no other CHOICE, it’s been taken from me, I can’t find a SMALL (less chance of her bringing viruses home) place for a non potty trained almost five year old, I can’t find a special needs school for my son that isn’t noisy, and all the strain results in more struggle for this dying body…Please don’t remind me of what I’m missing. I know your children go to school. My goodness, do you know how blessed you are that your children can COMMUNICATE? Please don’t tell me, “They’re fine. They’re going to school just now,” when I ask how they are. You have no idea what might have just happened, or is happening in that moment in my soul.
Maybe my child just hurt me and reminded me how desperately I need help and a break. I can’t take disability leave like other AS patients end up doing. I couldn’t even do bed rest right now with this chest infection because they are all home and with hectic needs. I can’t even send them for a walk because my littlest angel refuses to go anywhere. So much for the doctor who yelled at me for not resting.
Please just answer the question I ask. More than anything, I want your children to be healthy and that’s why I ask how they are, not what they are about to do or going to do. The activities? Those are extras and bonuses. And most days, I don’t need a reminder of that when I’m gasping just for air, wishing for their neurodevelopmental health.
Most days, I need a hug. My body is failing. It’s really frightening to be told by a specialist, “Well, there’s nothing more we can do to treat the lungs because it’s AS causing the decrease in function…Any virus or infection is a matter of life or death….Please purchase N95 masks. Ask the pharmacists for that kind of mask to wear in enclosed places.” It’s like a small death sentence- always living in fear. Worse now when I’m not even able to try slow the AS down because I’m sick. (No injections till my chest has recovered.)
But…My children are getting older and stronger and WORSE. I need a hug. Not a reminder that your lives are so unlike mine. I want to relate to you as a mom. Without the reminders that unlike you, I’m a special needs mom and you’re not.
I love you. And I do ask about activities when I’m able to bear it. Everything in your life matters. And so I ask for that one small mercy and thoughtfulness. That you answer only the question I ask, and tell friends like you, friends in your shoes, about the things mothers in your shoes get to do. Things I see slipping further and further away while moms like me do therapy and screaming and meltdowns and pain, wondering what will happen when the four year old child who hurt me is bigger, older, stronger than me.
It’s one thing being sick. My people and I have lived my terrifying lung infections before and heard the weird sounds. But we didn’t know that each sickness was making my long term prognosis worse. We didn’t even know I had any kind of prognosis. But truth is, people with interstitial lung disease with fibrosis live on average 3-5 years. Some live 6 months. So here I am, diagnosed, and suddenly, my clock is ticking. And I tried my best not to get sick.
When I saw the GP, he gave me Duplin breathing meds for my nebuliser. It’s meant to open up my airways so I can breathe better. He said, “and you can keep the ones you don’t use for winter.” I thought to myself, “You obviously have no idea how sick I am. I will finish these ten! Especially given I’m meant to nebulise three times a days! I really feel terrible! This is just the beginning and I came ‘early’ before the worst of the symptoms, only because my rheumatologist said I should. This is getting worse.”
I only have two left. But my chest is still wheezing badly and I’m still not sleeping thanks to bad coughing. So much for him telling me the meds would “stop your cough.” For AS, we have to lie down as flat as possible, not even using a pillow. (To stop the higher risk of us fusing in a bent position.) But I can’t breathe. It’s worse flat, so I wake up gasping and add a very thick pillow. But then that puts weight on my painful bones and I just can’t get comfortable. I’m in a nightmare! I’m so so tired. And scared. When will my lungs heal? What damage is being inflicted? When will the now very settled sinusitis heal? I’m going natural treatments for it on top of the antibiotics for my nose the pulmonologist gave me last year. Sinusitis is bad.
And being off ASAP treatment is BAD!
And the groups, the lung disease groups don’t help at all. I am scared to go in. Someone dies all the time. They’ll be perfectly healthy, get bronchitis (like me), go off treatment because the course is finished (I still have some prednisone and antibiotics), then get pneumonia because the actual bronchitis isn’t gone. and go into hospital and die. It happened last week. Or they get bronchitis and die. Or they get a lung infection and die within six months of initial diagnosis after hoping they’d live with the disease!
The group is proving my research correct. I wanted to plan my last days. I wanted to die in hospice, not at at home, and not in a hospital. Hospital brings no rest, no peace at all! And hospice would be able to manage my bone pain better. But the research journal I saw said that most of us don’t die from the disease progression, but mostly from an infection that suddenly comes up. And when treating it- where do you go? Hospital. It’s not like people don’t recover from infections so you don’t know in advance that THIS is the killer infection and decide to stay home. Plus..it’s painful. The chest is sore, you’re tired, you want help with your breathing. So though most want to die at home, they go in, and die in hospital.
The number of daughters, uncles and sisters and spouses that have come in to announce a loved one’s unexpected death is shocking.
Also, unlike many, I can’t have a lung transplant. So many members have HOPE. But I don’t. Thanks to AS restricting my rib movements, I’d not be a candidate for lung transplant. They transplant into healthy people.
Do you know how horrible that is? Being part of a group you’re not really part of? They have a positive (Well, the long term treatment etc is AWFUL. But I would do anything to be with my children longer) to look forward to. I don’t. Though once in a while, someone does state that the risks are just so high that they have chosen to die rather than try go through transplant. But it’s not the same. The choice has been taken from me.
I hope one day I find a group specifically for those of us who can’t have a transplant. But still, I won’t go in often. We keep dying.
Am I starting to do absolutely fabulously? I’ve seen how many Enbrel (or any biologic) patients with AS don’t ever get full pain relief- ever even when it’s deemed to be helping. When the biologic is working, it means the pain has reduced and damage is slower. That’s all. And sometimes it’s not enough. Patients are “on treatment” but STILL can’t take walks because of pain, still can’t sit long, still can’t go for coffee with their friends. (Naming things real patients have mourned about.)
It’s hard.
But it’s also better.
I am on many painkillers including Tramadol. And I still have to go try the SI joint injections into both sides- when I’m better. So maybe there might yet be relief from those. Last time I thought there wasn’t any relief till it wore out and then I realised it had partly worked after all. It’s like being on a biologic. You can’t always tell because you’re still in pain.
I got distracted! But, it’s also better.
I sit here after two nights of no sleep. After a flare up that began on Monday but has totally disappeared!! It’s never gone away this fast. My last Enbrel injection was on Friday. I don’t know when I’ll be able to inject again thanks to this virus. I need this not only for my bones but for my lungs. It can help slow down the deterioration caused by AS.
Guys, I’m sorry I’m not as coherent as normal. I’m not feeling great at all. My chest is on fire and it feels like it’s crackling inside. But here’s my point.
Last night when I was on the phone with my husband (He’s always traveling) I told him that I thought I’d turned a corner regarding pain and that I think it’s the Enbrel. I had not had to take my Tramadol in the afternoon, in fact, I didn’t take any painkillers in the day time. I usually take three in the morning, sometimes one half way between morning and midday, another three after midday, and three in the evening. But when we spoke on the phone at around 7pm, I’d last had pain tablets in the morning. And I was going to only take the two lighter type of pain tablets- NOT the opioid.
In the night I kind of regretted not taking anything stronger, but the pain was bearable! And that was without the Trepiline I also take at night. I’d forgotten to take it and it makes me groggy if I take it late, unable to study my Bible before the children wake up. Which was ironic because I was so sick from this virus that I didn’t study my Bible anyway. But here’s the thing. I’ve only taken two pain tablets because of the ACHE I have. It’s not sharp. It’s not as if it’s bone grinding on bone like normal. It’s the level of pain I last had in my late 20s!! I feel weird! Like I’m floating! (That might be lack of oxygen talking, or my sinus infection but let’s not go there!)
I read memoirs by other sick people and so many family members and members of the public and church folk give money towards medical bills, travel costs etc and it’s lovely. But that doesn’t happen in Africa. I don’t go to the pharmacy each month and feel bitter about the costs. But reading those books does remind me of how different things are here. But more importantly, I HAVE received! Three people have given me money in the past year. I don’t know how to explain what this means. I don’t have anyone to come help me sweep or mop. So to have someone give money just randomly means the world to me and they will never be forgotten.
I may not have “all these people” giving but I know that those I give to right now, would give to me if they could. I know we love each other and feel terribly for each other. And I know they would come help me clean or put laundry away or cook. One even stayed away after wanting to specifically come and clean when she was sick because of how much she loves me. She gave me health, in a sense – a gift better than money- and at a time when we only knew of one bad lung function. It was in November. Maybe by then my lung diffusion capacity had already also decreased as found in January.
Each payment I make, I remember the money gift that came all the way from Kenya. Prayers do go far. Checking in makes me feel loved. But Enbrel costs money. And so today, I thank my faithful friend who regularly comments on my posts. She makes me feel heard when she does, it helps, knowing I’m not writing into air. And she sacrificed for me despite never having met me physically.
Today, I’m going to be real. Every kind of gift of love matters. But when I realised that though we increased our costs by going to a higher medical aid plan, we would ALSO need to pay R2000 per set of Enbrel injections, my heart sank. I looked at the pharmacist in despair. And she too was upset. Money counts. And knowing that someone gave gives me strength. I don’t despair for long because I remember the gifts. God will provide. He’s already provided sisters who love and check and ask and worry. And money.
That’s the reality. Prayer only goes so far. My feeling thankful despite sickness won’t pay the medical costs. And so, today I focus on money. Not the one I’m lacking. But the one I was given. When I pay, I breathe a prayer of thanks for Flydah, Abby’s mama, who didn’t let borders get in her way. And I pay pretending she’s right there with me.
Let’s see how long this reduced pain lasts. And let’s hope I get better quickly so I can keep injecting. Find someone near you who needs the same and give your time or your money. You know you’ll feel good and I know God will be feeling warmhearted over you when you do. You might be the one to help someone get over their despair.
We bear each others’ burdens. My people know I worry about them just as much as they worry about me. We care equally for each other. I immerse myself in their problems and cheer for their victories. I love them deeply.
This angel above is in her 20’s in Malawi. Daughter of a church sister. Maybe two years ago she heard what I wasn’t hearing as I sent her a voice note and walked around my home. “Mom, why do you sound like you’ve been doing too much? You’re not breathing properly! Please stop! You need to rest!” That is love! She broke my heart recently when I asked her how she is, she answered vaguely if I remember correctly and then when I queried it, she said sadly, “Everybody I love is sick.” And that was before we knew my lungs were deteriorating. Her mother has a chronic leukemia that usually patients have to take lifelong chemo tablets for. Her close friend has heart problems. Major ones.
It was the fact that she picked up the breathlessness. And how I stupidly thought maybe it’s from walking too fast around the house.🤦🏾♀️
It’s this friend
She told me to stop an exercise by Juice and Toya because during the video as I spoke, I started coughing and became breathless. She told me to obey m the pulmonologist who had told me walking 3 times a week is ENOUGH exercise for me. (He didn’t know I cough and splutter for that workout. I need to try and talk for all my supposedly low impact workouts from now on. I hadn’t thought to try them all while talking to myself. I thought as long as I don’t cough it’s ok. There’s one I dumped because I became way too breathless and tired even without talking. I thought that should be my criteria) She said it out of concern as she watched, not knowing that it’s actually true advice from experts too.
As I said, we all share our problems. Life is not perfect and will never be perfect on this earth. Every day brings challenges we overcome, screaming children we try work with, another day with no job interview, heartbreak over children in their ministry who are neglected… But it seems sometimes, that love is one- sided.
I shared once how my husband was bemused and slightly disapproving that I was doing housework late at night. After all, I had been caring for our family of eight during the day too. And we knew I had AS. Some commented that they too also work till at night.
I reminded them that the context was that AS patients should be resting and not working all day and night. One lady totally got it. The other very healthy, younger, less than three children who sometimes go to relatives so she gets to rest from parenting (If I said how few children she has, people might recognise her so I won’t) told me, “Don’t forget, we also get tired.”
That was when I realised that I bore her burdens, but she had no desire to take in anything I’d said. We AS warriors and others with chronic issues (especially us without treatment yet) wake up alreadytired! It only gets worse during the day. And now I know too that my lung deteriorating means my the lack of enough oxygen reaching my blood which also causes fatigue. Again, I begin the day tired. I just wanted to be grateful that despite my problems, I’d worked too much more than usual and was happy that the day wasn’t as bad as usual. Why can’t we rejoice for each other? Your A might be better than my A if you’d always been a D student and I’d ever been an A student! It’s not the A, it’s you doing phenomenally for YOU. I celebrate that for my people. And my people celebrate it for me. My true friend above even said that she knows that if I were well, I’d do even more. THAT meant a lot. This stupid disease is holding us back a lot. (As do many other diseases!💔)
I had a bad night. Woke up and emailed my rheumatologist about pain relief-the joint injections and if there’s anything we can do my shoulder and elbow. My chest has been weird and I coughed a lot. We are given sleeping tablets that also allegedly reduce some pain so that we can sleep through the AS pain at night but nope, it’s been no match for the shoulder, elbow and last night, SI joint pain. And so, my posts will reflect that. It’s not all sunshine and roses. Finally gave up trying to sleep at 3am. We wake up tired not only from the disease, but from pain-filled nights. And we gotta keep parenting and working. And that’s ok. Everyone has trials. This is my blog, and my trial.😅
I’m still grateful that my little ones miss the struggle. My very talkative four year old asks to sit on my lap for story time. It HURTS even more. But I do it anyway. (Though I try avoid it happening daily.)
Today, I just wanted to thank those who were worried before I realised I really did have something to worry about. The ones who worry today-not only about me, but about all the challenges each of my children have. Who wonder with me who can solve each problem…Like one child (not the four year olds) with a terribly leaking bladder who doesn’t want to wear a pull up but is causing the bed for lots of washing as the ammonia smell is strong on clothing worn. I need to share that. It felt great to see a post on lack of bladder control by an aunt and to see other aunts agreeing that they too can’t control their bladder for various reasons and felt validated. I want to validate any mother in that situation. Not forgetting my shirt size angel who has outgrown baby diapers and is nowhere close to being potty trained. I see parents in my special needs groups having to buy size small adult diapers for their children, teens. We’re in this together, parent, I appreciate you. This road would be harder without you.
My nine year old, Ammy, saw me last week taking my injection out the fridge. She even expressed surprise that I was doing it myself. All along, she thought I was going to a doctor to inject me.
I hadn’t even meant for it to be a big production. But I’d had an appointment earlier on so didn’t take it out to warm it up at my usual time. Yes, my older children see it in the fridge when they take stuff out, but it’s not in their faces. (I hope.) I doubt they look inside and think, “ Oh yes, Mom has an incurable disabling disease, this should hopefully slow it down.”
So I was startled and amused when yesterday, Ammy asked, “Mom, is your ankysauraus spondylitis gone now?” I giggled inside at the name, and told her seriously, “No…I will always have it. Why do you ask?” (How could she forget that I’m treating it weekly? Did she think last week’s injection was the last treatment?)
She replied with, “You don’t act sick. You act normal. So I thought maybe it’s gone now.”
The sweetest words this mom could ever hear! There are so many things AS stops me from doing. So many minutes I cannot stand or sit with my children. But they don’t see that! She just sees a mom who is teaching, doing chores, hanging laundry, taking laundry out (I don’t take a huge basketful in one go. So I make multiple trips.) She doesn’t see the CAN’Ts. She sees a normal mom. Sometimes these invisible diseases are better. I don’t want her worrying. When the pain hits too hard, I give them something to do and I go lie down. I try not to burden them with knowledge that will worry.
And that is why I haven’t told any of the children the latest lung diagnosis. Interstitial lung disease isn’t good. To have fibrosis too is worse. The lungs are scarred and struggling. And the only way is down. I haven’t told them a thing.
I know of some angels who put university on the back burner when they hear their parents was not great. Truth is, an infection can kill me before I even get too bad. But I could also live 10 years on a slow decline. So why worry them? Why clip their wings if they want to fly far? (My daughter wants to go work overseas after she’s done her nursing degree.)
And so, I rejoice that to my angel who is a worrier by nature, I act normal. I pray I don’t need oxygen for many years to come. Then I will look normal. Invisible is a blessing when you don’t want to cause little ones to worry and fear.
And a smile, daily smiles, go a long way in reassuring little ones that life is normal.😊
I had so much hope when I began this blog. My original one was about my hair. That was easy! There were changes to discuss, cutting it to discuss, and just sharing about my country. Going from processed to natural was a big thing and I had many fellow loc sisters following along and responding. I had community from all over the world interacting. I knew we were journeying together as they shared tips, or congratulations. I want writing to just Flydah😅(thanks for commenting here despite finding me on WhatsApp too!)
Then, in 2009 I could also share about our time doing missions in Tanzania. Again, there was much to write as wonderful and sad things were happening. Looking for our own project to run, finding AIDS widows and their children with no food. One woman couldn’t even come to the door as she had no clothes at all. We could make a difference and we did. It was lovely! There were highs.
Then my currently eight year old son’s diagnosis, his struggles, his triumphs when he stopped falling and stopped running into walls. When I stopped having to pick up an injured baby and when I didn’t have his blood on my dress anymore. There were highs! There was progress!
This time. I can’t. I can’t find the highs. I don’t have progress. Not in the things that matter most. I am still in pain. I still haven’t found out if Enbrel is working for me and it’s not surprising. I only started taking it on January 25. Instead of highs, my health is getting worse. My lungs are not behaving. And I feel it. I lie here now at 6:22am and I need to take pain medicine before I can even consider moving. That’s my morning every morning. Pray. Read my Bible. Fall asleep while reading. Feel guilty. Read some more. Pray. Feel pain. Try motivate myself to get out of bed to take pain meds. Wait for them to start working. And then try exercise if I won’t be doing too much housework.
That’s not interesting! Telling you that I tried vacuuming and mopping- well, I didn’t try, I succeeded. Telling you that those are activities that cause extreme pain so I am now stopping…What will that help? I started blogs to show God’s mercy and kindness to us, to others, to my children. I shared a mixture of interesting and disheartening things. I had a variety. Now it’s constant.
Constant pain. A huge struggle with depression. This is what is constant.
If it’s not my NotMuchofaTalker angel as above, it’s my son, especially when I’m not with him. When I’m cooking, or cleaning somewhere, or doing a video for them, or making… He screams purely for attention or when he’s angry that he is being corrected. He screams when told to get dressed. He screams when told to bath. He screams just because… Yesterday he screamed and screamed because he fell and nobody saw him so nobody said “Sorry.” So he screamed. My teen daughter went to check on him. He kept quiet. He wasn’t injured visibly. She then went back to cooking. He screamed again. My teen son went to check. He stopped. My son obviously didn’t show the level of concern he wanted. He started screaming again. Loudly. Very purposefully.
I thought of the passersby. Their conversation we could hear and wondered what they thought of the screaming.
My girl. My girl first screamed yesterday because she was stopped from putting a cardboard container of blocks into their toddler swimming pool. She then screamed later because she wanted to put her own slipper on a very tiny bear but it kept falling off. Then later on she screamed because she didn’t want to bath. Yet when in the bath she is happy. Unless she sees me. Now she cries for cereal while in the bath. So I have to hide even when she’s in the bath, not only in general.
How do I get any work done!??
And that’s the problem. Two years ago, I prayed she would progress. I hoped she would stop being so unfocused and would enjoy a toy, a puzzle, a programme on TV for longer than 30 seconds if even that. The things she enjoys for a long period of time, she stops enjoying very quickly. I don’t have money to find new things to captivate her daily! And it’s not like ALL new toys captivate her in the first place.
And that’s the thing. If I were to tell the truth in this blog, it would be heavy. It would always be constant pain. ‘Chronic suffering’ of every sort. And I don’t WANT to be that. And my reader who comments is already available on WhatsApp-she can ask me privately and does anyway on days I don’t blog or don’t post shot out health. So why blog? There is no progress. There is no’ magic bullet’ to share. And you guys aren’t autism moms anyway so you wouldn’t NEED the magic bullet. So…Why blog?
There’s no reason to. Yes, good things happen. But they don’t undo the bad. They don’t make my actual journey smoother. For two years I hoped for peace, less screaming, I wished her mind would rest…
I had hoped I would share those moments, not the ones of shutting windows so neighbors don’t get disturbed by us.
There really is no point in sharing when all there is to share is struggle. With her, with almost everyone in the family-including the medical field that is refusing to help my angel with her rib pain.
Silence is golden. I will wait and hope. I can’t do this for another 20 years. Maybe one day I’ll be back. But not here. I stopped my automatic payment due next month for this site. I just wanted to end it ‘nicely’ so you don’t think I was run over and killed or something.
“Severe” autism and AS have won- for now. I need a miracle before I lose my mind completely. I’m already drowning and have lost my joy. There is no large group of fellow autism mom sisters to respond and reply. Or AS warriors to share tips. I am alone. (With Flydah.🤣 )And she doesn’t need a blog to find out how I am. ❤️
Hoping the other handful of readers have great years ahead. If you’re hoping for a miracle, I’ll hope with you. See ya on the other side! 👋🏽
PS. My husband is not happy about that. “Well, FIND something to write about!” I don’t know… Ok. Maybe I’ll do something for Adventists on our current Testimonies to the Church vol 3. I had been considering doing it via YouTube. Maybe I’ll do it here. It’s still not about my life. But it will be WRITING of some sort. And who knows, maybe the learning centre director who has disappeared and stopped responding, will suddenly appear again. Or someone will find a cardiothoracic surgeon to fix my angel’s rib.
But…I still want my angel to be happy. Always. And only sad for better reasons- like, falling. Or missing dad when he leaves.😅
I don’t thank Him EVERY day. Today, I’m out of options and solutions and hope. Today, I am done. I am tired. I am sad. Today, I am fearful, anxious, worn and weary. Today, I am not feeling anything close to thankful, only desperate.
Truth is, it CAN be worse. But, my goodness, it could be better too! And so today, I will recognise that acknowledging that things could be easier is not wrong. Asking God why He won’t make any aspect easier is a very fair question.
There will be days when we just sink. Distressed, upset, faking the smile that adorns our faces. Patient when feeling impatient with God. Where is the help You promised? Where is the strength You said you’d provide for each day? Because right now, today…I am weak.
I honestly despised the light, trivial, thoughtless happy new year messages I received this year. It was like the sender put no through into it at all. How can this be a great year when none of my years have ever been great, pray tell? How can I be happy – the way it’s meant in that phrase- when every day is painful? Physically and emotionally?
I’m also mindful of those who didn’t send such light, pithy messages. The ones who wished I “get better”…Umm, I have an incurable disease. Keep your miracle hopes to yourself . I know they didn’t mean, “I hope this year brings treatment that brings relief.” I know they actually have no idea what AS and her friends have done to me and continue to do to me. Just like the very same people have no cooking clue how hectic my parenting and educating journey is.
I don’t need messages, I need help. And I don’t know where to find it.
I need affordable special needs educators for all three of my younger children. There aren’t any.
I need my mommy dragging non speaking angel to stop dragging me and stop seeing food when she sees me. It gets in the way of our ‘learning’ and our play and my chores and my interactions with the other kiddies. Will it ever happen?
I need to figure out how to help my middle two who it turns out have words, but have no idea what the words mean. How do you even communicate when you have to ask them to re-phrase just in case what they are passing on isn’t what they intend to share?
Where is the help? I wish we were living in my book. Lol. There’s a foster book I was reading based in the UK . The foster child got the child one on one help via a teaching assistant or aide that sat through each lesson with the child and helped that one child. Ha! What are the chances HERE? That would definitely be something I’d use if I were there. (And a foster mom. I don’t know if the State provides the services to normal families.)
My body pain is increasing. I feel sick – nausea etc (Finished my antibiotics tests and REFUSE to take more!) I’m done . I want to sleep. I want to rest. I want to relax.
While I wait for that opportunity. I’ll rejoice in having hung half the laundry. It could have been none of it. I’ll be glad I did something educational with my talking children who do engage with me. I will rejoice over how once during a very long puzzle play, my non talking angel told me “two!” as she put the number 2 in the correct slot. I’ll be happy in how she now does turn the pieces around, only giving up a few times and asking me (Pulling my hand while holding the piece and directing me to the right hole!!)
I can not thank God for our challenges as they are just too overwhelming. But I’ll thank Him for other things. I hope He sees the above paragraph because I’m too sad to talk ‘happy’ right now. Maybe later 😅
Wow, wow, wow. After a terrible night where my elbow (the one that was operated on ) was keeping me up, today took me back to 2011. The pain is low, where my coccyx is. And it has not reduced in intensity no matter which tablets I’ve taken. I just want to CRY. Or kick. Or scream!
This is nonsense! Deep ache going down my leg. It’s like someone is drilling into my back, and I don’t know why it’s so bad! I didn’t overdo anything yesterday. I didn’t sweep anywhere today. I didn’t bend into a trolley like I do sometimes when Mr doesn’t do the grocery shopping with me. I didn’t do much of a workout, only 15 minutes…I didn’t even wash dishes- I stacked the dishwasher. Ok, I guess THAT bending might not have helped. But it shouldn’t be like that! It shouldn’t be like this!!!! Life is not meant to be about levels of pain. It should be pain free completely.
I read something shared by one of the Associations. I can’t recall if it was the British AS one or the other one called something like ‘Autoimmune inflammatory Arthritis society,” that covers all the autoimmune inflammatory arthritis types out there, but anyway, the article said that scientists had found that unlike rheumatoid arthritis where it’s the joint that’s inflamed, for AS, it’s the bone, not the joint. No duh!! We feel it throughout, it’s not only in the joint! I could have told them that for free. But I felt validated too. Because every time I tried to seek help and they’d try tell me it’s muscle not bone, I’d tell them that to ME it feels like my bone. They would try poke my JOINTS in my between my spinal vertebrae even up to my middle back area (as opposed to down in my my SI joints where I said the pain was!) and of course I didn’t feel much there back in 2011-2015!
What do I with all this? The excruciating pain? The fatigue that was so evident that Mr felt sorry for me, telling me at midday that I look “so tired, shame!” What do I do when I feel extremely alone, nauseated from the pain tablets and helpless?
I thank God anyway. He must be doing SOMETHING with all this suffering. It can’t be for nothing. It’s been decades and it’s relentless. He MUST be preparing something stupendous and amazing for me. I know He will wipe the tears away, I know He will be excited to give me a new body. I know He sees my pain and hates that I’m going through it. And I know He loves that I lean on Him anyway. Even though He isn’t healing me.
Even though He isn’t healing me.
God isn’t a fairy godmother like I thought when I was a child and expected Him to work miracles for me. He isn’t magical. He doesn’t just do things for the sake of just doing them. He doesn’t NEED to perform a miracle in order for me to believe in Him, trust Him and love Him like He has to for some doubters. So..Why SHOULD He heal me when I don’t need to be well in order to glorify Him?
I can ‘live’ for God even when I feel like death would be preferable. I can show His character to every radiographer. To every doctor…The GP just had this look of awe on Friday as he heard about my life- he’d wanted to write me a sick note to be off work for the finger, not my bones. Like he was seeing what the friend of an acquaintance saw in me, like I’m an angel. (Not that I FEEL like one.)
God made me to glorify Him in the pain. And I can do THAT perfectly. I can smile at my children, sympathize when they spin and smash into the TV stand, getting a bloody lip. I can praise my teen daughter for giving away a whole box of expensive, fancy biscuits (she’d bought for herself) to a beggar on the street whose board claimed he had no food at home. I can be a present mom precisely because I know God is present for me too.
I’ve been studying the book of Job. I always study the Bible from the start to the end. I don’t do thematic study except for when it comes to Daniel and Revelation where I compare similar themes. This month more than ever, I felt Job. When his friends hurl accusation after accusation, he can confidently tell them he KNOWS God is not punishing Him for something because he has done nothing wrong, and done everything right.
And so do I.
I got sick from infancy. I did nothing wrong. And I aim to do everything right. Unlike some accusations hurled at me over the years, I DO have faith. Faith that God knows best. Unlike some accusations, I know I will not be miraculously healed by seeing some weird guy who claims to fly to Russia in his head! I know my healing will be when God comes. After all, I’ve heard of some AS patients going into remission. But not healed. Why should I think I deserve what they don’t have? I know of too many AS patients who have died due to it. Why should I live? I’m not any better or more worthy than they were.
And that’s ok. I’ll thank Him anyway. I’ll praise Him for the good and the bad. I’ll thank Him for the little milestones. Like how my non-talking twin was terribly afraid of dolls for AGES! And now suddenly has been taking her big sister’s baby girl from her room. I will tell you that I left the shops extremely sore but happy that I found two brown babies for the twins so the one stop stealing her big sister’s baby, and so the other stops crying that she too doesn’t have one in HER hand.
My baby girl isn’t scared of dolls anymore!! I’ll thank Him. Now and forever more.
They said I should write a book 