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.
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.
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!
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.
Life has give me lemons. And I am on the autoimmune protocol so can’t add any sugar to turn it into lemonade. So I’ll just have lemon water instead.
The chest has finally started behaving, so I cancelled the GP appointment. I had been complaining for a while to my husband, telling him my elbow was feeling wrong. The one that had the nerve release but not the complete procedure I’d booked for- the transposition part. Basically with cubital tunnel syndrome, you’re meant to move the nerve from where it’s stuck in the elbow, and move it elsewhere where it won’t get stuck. To a different place on the elbow- which my surgeon claimed he wanted to but I have no fat so the nerve would have a very thin layer over it, causing me a lot of pain forever. Or, as google and other surgeons say, you can move the nerve to lie on the muscle. He didn’t. He just released it from where it’s stuck..and put it right back.
And yes, even my hand surgeon was displeased.
And now I’m the one paying the price either for the surgeon’s laziness or for his lack of experience. My arm has never healed. I have numb areas, I have areas that feel pain. But now, the nerve has become trapped too. I had been complaining that it felt like it, I have started dropping things- which means my grip is getting weaker, and yesterday confirmed it.
I picked up my dumbbells, hoping to restart my AS exercises. I’d felt too sick to do most. But when I did a bicep curl, BOOM, SHRIEK, my nerve screamed. I tried lighter weights. Same thing. Bending my arm causes pain that I now cannot ignore. And the elbow pain has now begun waking me at night.
I’ve ordered a brace to wear at night. The conservative approach is to stop the movement causing the pain, wear a brace to keep my arm straight at night, take anti inflammatories (which I am on already for the AS) and wait and see a while. But every bit of lost movement cannot be regained. This is a condition that can cause paralysis of the hand.
And so, I wait. And tremble. Recovering from that surgery was BAD, and that was without the nerve fully being moved. I assume the next surgeon I find will do the full procedure. I couldn’t sleep for weeks! My nerve was in so much pain that even a sheet on it with my pyjama sleeve covering my arm, was excruciating. I looked for a doughnut to put my arm on so my elbow would rest on air. Talk about difficulty sleeping, but the thing I got was too hard. I’ll buy a breastfeeding circle pillow as soon as I know I will need the surgery.
So, the glass has water for this thirsty soul. My chest is getting better. But it also has so much lemon juice lemons that it grates my teeth- my nerve is in trouble and I hated the long recovery period. I’m scared of it… And I hated not being able to use my arm. And I don’t know where to find a GOOD surgeon.
And also, I’m going back to the Endodontist today. I had a crown done by a dentist. A bad dentist who didn’t believe me when I said the temporary crown was way too high. I went to a different dentist that evening because I was now experiencing jaw pain from not being able to bring my teeth together and he was in shock. I didn’t even have to bite on the paper thing they use to check your bite- my upper and lower teeth were clearly not close to each other.
Long story short, that crown fell off. Then part of my tooth broke. When I saw the Endodontist she said that if she had put it in, give it was less than a year since it was installed, she would have charged me nothing to replace her poor workmanship. Alas, the dentist not only charged me for the consultation to LOOK and see, but then told me they wouldn’t be able to replace the crown and I really would be fine without it 😏. And now, a further part of my tooth broke off and I’m going to the Endodontist to find out if there is anything she can do to save the rest of it. And get a quote for how much that will cost me. A crown costs a whole R6400… Gulp.
My glass has lemons. I will have to be off Enbrel for two weeks pre surgery and two weeks post surgery. I only restarted yesterday.
I read memoirs of holocaust survivors. Death camps and concentration camps where you had to find your own cup or bowl for the disgusting ‘water soup’ they received. A glass was a luxury they would tie to themselves so no other desperate prisoner would steal. Theirs was usually made of metal, a metal cup. It was the only way they could eat enough to keep their bones loving. And that was a minority. Many died even though they passed a cup.
I have a glass. It is not really half full in my estimation, but things could be worse. I could have no glass at all. So I’ll accept the AS lemons and daily struggles of life. I’ll go and hope my tooth can be fixed. And I will be grateful for a glass. At least I can drink my sour lemon water. It will keep my bones moving.
You know, the Bible in 1 Thess 5, tells us to be thankful in every situation. In my head, I twisted it to mean ‘be thankful for the situation’ itself. But no! Not necessarily! I can be thankful that – if I’m truly surrendered to God- the situation is working out some mysterious plan that will yet be unveiled to me, but I can definitely find other things to be thankful for, even if it’s not the actual situation itself.
Take Ankylosing Spondylitis. I will never be thankful for it. Nobody ‘needs’ it in particular, in order to become a better person. I certainly didn’t need it. I know others have said that it has helped them care more. But I always cared. But I can be thankful for the care providers available – if they’re any good. I can be thankful that I’m not relying on strangers to pay for treatment. I can pay, even if that means losing out on holidays away, fewer books for me to read etc.
I will never be thankful for the past 11 nights of no sleep. Firstly thanks to my cooking, gasping, wheezing lungs, and now also because of AS that was just waiting too come at me full force. But I can be thankful for the people who ask, “Ok…Your meds are finished but you’re not better. What next?” I’m thankful for the concern and care. For a burden borne before I even share it.
I am not thankful for the situation that gave rise to yesterday’s post. But I’m thankful for the gracious friend I sent it to who totally understood. And I’m grateful for the friend who fully understood the audacity when someone else tried to insert themselves in my situation and said they “know” what I’m going through when they cannot ever know, given they only have a third of the number of children I have, none have the intellectual and behavioural problems mine have, are all double digit age, and she has none of the realities I mentioned in the post. And definitely had never felt what I shared in the very final closing sentence. I can be grateful for shared facepalming.😁😁I almost felt like I had written in Greek, that that would be a response to the entirety of my post. I’m thankful for the confirmation that I’m not crazy.
I am hopeful that my lungs will not stay like this. I need sleep. I need to breathe. I need silence. I need not to stumble out of bed to hide in the bathroom hoping my coughing won’t wake the entire house.
I can be thankful that I turn heads.
After all, I walked past a nail salon place and my cough was so stunning that everybody inside there looked at me. I felt like I had the plague!
We all like to stop traffic, don’t we?😉
Yesterday was a public holiday here. Husband went to buy fruit for us so I don’t scare people. I can be thankful for that too. Fruit.
In every situation, I hope I’ll manage to find something to be thankful for.
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.
They said I should write a book 