Author: Grace by any other name

God-lover

My Daughter Hurt Me

Grace by any other name4 Comments

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.

My Children

Grace by any other name1 Comment

Teens are interesting. And teens don’t want me saying too much about them, so I can’t. But suffice to say, they are..alive, stereotypically teen- like😅, very helpful, and battling off the ‘cold’ I gave them. Thankfully my teen son didn’t get it in his chest.

The other day I had to laugh. I was trying to rest- remembering the GP who reprimanded me last time for not staying in bed and resting when I had the chest infection. Next thing I hear, my teen son, “No, no! Mommy needs to rest!”

My talkative twin was having none of it. At the top of her very cheerful voice, she was shouting, “Mommy, are you sick!! You sick!??” As if she’s asking, “Mommy, did you see my surprise!?”🤣

In a lower tone, her not very talkative twin sister was doing her version of yelling and saying, “Knock knock! Knock knock!”

How could I ever keep them out? So I yelled-coughed that they could come in. At least my not so talkative angel came and looked at my face, pretended to climb onto the bed then decided I was boring and started playing around my room. My other one…She waved at me and just went straight for my exercise gear, a puppet and my dumbbells and started playing with them. Didn’t even come close to me!😅 They were prancing about and oh so energetic!

All they wanted was my presence.

Friday afternoon, Reo, my not very talkative angel, refused to go for a walk. So she stayed behind. Loved how she was playing with her siblings who stayed behind with her. She was just so HAPPY! And I loved how she recruited her siblings. She was playing with them!

Presence. Peace. Happiness. These are the lovely moments of my parenting life. When my children are regulated and happy.

The Facebook Group

Grace by any other name1 Comment

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.

Eureka!

Grace by any other nameLeave a comment

I’m reading a book by the wife of an MND patient and she says something along the lines of how sometimes, “focusing on the positives” is actually a form of denial. That’s it!! That is exactly it!

This encapsulates exactly why I hate it when people ask me how I am, I tell them, and they respond with, “At least you…” Classic and real example. I told someone about my daughter’s rib. Her response was, “At least you know what the problem is.”

Lady! Knowing WHAT the problem is doesn’t solve the problem! That’s basically denying that there is a problem! It trivialises and minimizes the reality. And ..you can deny your own reality, but don’t ask someone about their life and then minimise the impact on them! And surprise surprise, knowing has not solved the problem indeed and it ever remains..a problem.

Please don’t say any “at least” statements to someone going through something. If they start to make their hair to chemo and it’s devastating, don’t tell them, “at least you can go buy a wig!” She will still be bald, wig or not! And wigs on bald heads aren’t always comfy apparently. And..it’s not real hair! It doesn’t sit like real hair. If she thought it was minor to be bald, she’d have shaved her head once in a while. She will come to her own place of acceptance in her own time. Let her feel it all. She’s living it after all.

Let’s rather just sit with someone in their reality. Ask them how they feel about it. Follow their lead. If they feel sad that their uncle-the only family they ever had in the true sense of the word-who had some degenerative disease has died, mourn with them. Tell them you’re sorry for their loss, don’t reply with, “At least he’s out of his misery now.” Believe me, she does think that too. But also, he should have never been miserable in the first place. And she loved him. She will miss him. His laughter, his concern, his phone calls. No number of “at leasts” will hide the days of silence. The loneliness of having no loving family -worse yet if you, Miss At Least, do have family and love.

Let the sufferers find their own silver lining. Live our reality. I’ve seen that happening perfectly in my breast ‘waiting for an answer’ situation and I am so thankful! There’s no minimising or denying, there’s instead, mirroring exactly what I’m feeling. There’s concern, wondering how the system is so not patient-friendly. Checking in. Getting upset with me.

The people who live your reality are the ones who will truly celebrate with you when your fears prove unfounded because they lived the fear. You will both truly be relieved if it was yet again, ‘just’ a cancer scare. Or they will mourn with you deeply, if everything goes awry. I’ve ever appreciated the friend who complains in an awed tone that I find positives when really, my situation (AS, lungs etc) is bad! We need more people like that. An ‘at least’ doesn’t comfort. Seeing our reality is comforting. An ‘at least’ means you don’t try to imagine what it’s like. You deny it yet it is too terribly real. Telling someone to focus on the positives will never cure the lived, day and night, reality.

Enter our world. Just as we enter yours.

We will be happy for each other just as much as we sorrow for each- only if we truly sit in each others’ worlds.

Enbrel, My Breast Lump and My Daughter’s Rib

Grace by any other name2 Comments

What I’ve read is true. Two days or so before your next injection, it wears off and you feel all the pain. I don’t even know when my next injection will be! It was meant to be today, and I was reminded of this sad fact by the deep ache I’ve woken up with.

So, I need to get better. And I also need to prove that I don’t have cancer as cancer patients aren’t allowed to be on biologics. Oh, I didn’t mention anything about cancer?

I’m one of those “Check your breasts!” fanatics. It saves lives. Early detection really is the best when possible. Even check just your skin for dimpling or ‘wrinkling’ or something different, even if inside you feel no change. That’s been my mantra for years and those who know me know that.

So, I was lying on my bed on Wednesday night and I decided to conduct a breast check. Went round my left breast first, all the way to armpit, and all felt normal. Went round to my right side and …”Hmm, what’s this?” It is very close to my breast bone (I know that’s not good) and it’s larger than two centimeters across. In a state of panicked, “I really hope I’m wrong, I really hope I’m not feeling something that’s not there,” I went out and asked my teenager, Eliora, if she could feel it. I did the same. Told her to start with the left and then the right. “Nooo!!! It’s not normal! I can feel something here!” I had a mammogram last year January and there were density changes and changes the radiographer thought and good were due to surgery but suggested I go back this year. Now, I’m not so sure they were purely from surgery but at the same time, I hope they were.

Husband arrived from business in Botswana that evening. I lay down, pressed each breast flat, and he couldn’t miss it. You can see ‘something’ raised on the lower side towards the bottom middle bottom of my breast.

I sent photos to my friend and she immediately saw the difference too. And we all know how notoriously bad photos are.

I have no clue what it is. Is it some weird muscle thing? Is it a cyst? Is it scar tissue from the two breast reductions I’ve had in my life? Is it a weird bony growth caused by AS? 🫣Is it a tumour? Is it necessarily malignant if it’s a tumour? Or will I escape for the fourth time with a growth that needs testing but will NOT be a malignant mass?

I do know how stressed a young girl was in university when she found a lump. Her boyfriend and I were visiting her room in res and she was frantic with worry. Hers was in the breast itself, she asked me to feel it and yep, it was there. She went to the varsity clinic and they told her to return two weeks later for a biopsy.

For two weeks I stressed and her boyfriend stressed and she stressed. It was horrible. I didn’t want her to suffer! And her boyfriend was shattered with worry while we waited. Thank God for her, it turned out to not be a malignant tumour. I think it was a cyst of some kind. The relief was beyond explanation. I felt like I could breathe properly again.

I will feel like that after my next mammogram and ultrasound. Maybe after biopsy if they deem it necessary. I did do an online booking at the hospital I did my last one at but they keep the “we will call you back with a date” thing as promised, so I will call. Or maybe I’ll see my gynae and do a full check THEN go? Or I’ll book the mammogram AND book my gynae and see which is available first. I think she’d wanted me to do mammogram every two years and pap every year. I’ll do both. But first, this bronchitis needs to be better so I don’t cough when they’re busy checking me.

Speaking of bronchitis. Someone not yet on oxygen in our ILD group got bronchitis which then turned to pneumonia and ended up in hospital on a ventilator and died scared me! I need to get better fully. And I need to be able to be still for the mammogram. So, here’s to speedy healing and to being able to breathe a sigh of relief. 🙏🏾

I won’t talk about the irony of how when we were choosing which of the two ‘most expensive biologic paying’ medical aid plans, I kept telling my husband that the most expensive one of the two had higher cancer coverage and allowed for treatment overseas so we should take it. After all, Ankylosing spondylitis patients have a higher cancer risk. So…Yes, I believe in natural as being best. But I will use it in conjunction with surgery. And once I know what kind of breast cancer it is, I WILL look for remedies from those who have used natural remedies who will have been at the stage I’ll be found to be at and we’re healed . If it’s cancer, I will remove the enemy lump. If necessary, I will remove the breast too and so reconstruction – as horrible as that itself is. And I think I’d need an implant (as safe as possible) as they can’t take a stomach muscle as mine are behind mesh. I know I can’t do all the natural remedies my slow leukemia friend is on. Broccoli etc that she uses for juicing are bad triggers for my IBS. So that’s the other thing. I can’t use things that will make me sick in this way. I do not need a bowel impaction- those are also dangerous.

But let’s not go there.

We will go for a mammogram and ultrasound and both will tell me that it’s so obviously a cyst or something that I won’t even need a biopsy. I don’t know how long off Enbrel I would need to be for biopsy. If urethral surgery was four weeks surely a biopsy will be some time too, if not as long. After all, there’s still risk of infection… Will find out when I know that I need it.

And I won’t! Right?💪🏾

Oh, and my daughter’s floating rib is still causing significant suffering. My husband has 75% off flight tickets and has been to parts of America for work maybe every years since 2013, so he is au fait with getting about. And doesn’t have AS pain to contend with with regards to flying. And he won’t need to wear a mask so he doesn’t catch sickness. He will take her to America if I can’t find a surgeon here who knows about floating rib syndrome.

Absolutely Fabulous?

Grace by any other name1 Comment

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.

Dead Serious

Grace by any other name1 Comment

I really really want to beg everyone who works with people as clients or patients to be very thoughtful. If you’re sick with something infectious, don’t go spreading it. Take sick leave or if you can’t, wear a mask and tell the person you’re working with or will be working on, that you’re not well so they can decide for themselves if they want to risk getting sick.

What this sweet lady told her relative is what I mailed to my son’s physiotherapist yesterday. We went on Friday, and during the session? I noticed that she was coughing and sniffing quite a bit. I even asked if she had allergies or sinus issues. It didn’t even occur to me that someone would work with clients while sick. She said no, she’s “at the tail end of a cold.” Ie. She was sick.

Instead of running out of there -don’t know how long we’d already spent in her when I asked- I thought to myself, “Oh well, that’s good that she isn’t feel too sick.”

I’m also dense. It’s not only her fault.

I should have run. But we finished the session.

And I brought her ‘cold’ to two daughters who got sick on Monday. and took it into my body. The children are not too bad but I’ve got a hectically sore throat and it keeps closing up. Like..sticking together so I can’t breathe at night. It was a bad night. And my nose is super runny and blocked. A cough has begun today. The very thing my pulmonologist warned against. An upper respiratory tract infection is a matter of life and death for someone in my situation. To treat people knowing you have one. And even if it doesn’t lead to death, it weakens the lungs further. I even told her during the appointment that I have interstitial lung disease with fibrosis when she asked about my restrictions. I’m frustrated. It’s such a stupid way to get sick. Getting it from someone who KNOWS they are sick but instead of giving patients the option to postpone, risks their patients’ health so they can make more money.

My people know how I’ve always complained and hated that- like the lady above- when I get sick, I get sicker than others. It’s scary, listening, knowing the next video after the one I posted. And it’s eerie, knowing she too felt that her calling was to be a help to others. Thats me. I feel I’m here to help others, to bear their burdens.

I had been feeling thankful. I survived Covid. I survived other infections which were so bad I was given inhalers and had chest X-rays for. But my lungs are worse today than last year and than previous years. It will be even harder to survive them and I plan on doing so. I ordered N95 masks to wear in winter in the store and church- if I go. And a pulse oximeter so I can check my blood oxygen at various times (You usually tend to need extra oxygen first at night and when walking/ busy. I do struggle at night but I want solid numbers before I go back to the pulmonologist. It’s not a big struggle.) Have sanitizer in the car. But I didn’t know the first source of infection would be the physiotherapist. I didn’t think to at least wear the disposable masks I wear to see my pulmonologist who also wears a mask.

And so, I ask you to please be more mindful of how your actions will impact others who are vulnerable. Nobody deserves to catch a cold or flu anyway. But for some, every single infection can cause death.

Just like what happened Billie ‘BJ’ Thomas, the lady above, who did HER best to stay safe, thought she was doing well with her lung disease, but was killed by Covid 19- as announced by her sister in the last video posted on her channel.

Your thoughtfulness can preserve a life. Think of it that way and do the right thing. All I needed was the option to attend when she’d fully recovered…That’s all.

Thank you for reading

Open Adoption Trials

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The trials aren’t in the open adoption itself. Birth mom never asks for anything. Well. She did once ask for money for DSTV but I don’t her we ourselves don’t have it. That was years ago. Then she asked for something this past weekend. In tears. But it’s not how you think.

People, I rejoiced so so much when I heard her daughter had passed Matric (Grade 12), First one to finish high school! Birth mom hadn’t managed to. Side note. I told birth mom that from the way she told me why she couldn’t focus in school and they kept telling her she’s naughty, and other things, I believed she has ADHD. She said she agrees. She said when I first told her my ADHD girl’s diagnosis, that she had googled ADHD and found herself saying, “But..this is ME!”🥹And so we have, an adult with untreated ADHD and clinical depression. The depression is being treated.

So, the news that birth sister was pregnant was disappointing. Extremely disappointing. So much for being happy she would enter university. Instead, the cycle was being perpetuated by her too. None more devastated than birth mom who has been telling her for years, to not do what she did. Telling her how difficult it is to raise a child with no income. (My goodness, it might be possible where there’s a good welfare system, but not here in Africa.) They had been sharing a bedroom and bed in their home. That is how deep the poverty is. (I have an acquaintance who will be trying to find them a bed if they move back home. Right now, they’re trying to share food with relatives housing them.)

Now here’s the thing. Birth mom’s recent partner and boyfriend wanted her to abort. She didn’t. He told her he wished she would die. He told her he hoped her HIV would engulf her body and kill her during her pregnancy, apparently weakened by being pregnant. (He’s evil and stupid.)

So we’d already been trying to kind of be a help. And now THIS. Another baby. No clear picture of what the boy’s parents are going to do about their grandchild except knowing they aren’t about to come any time soon.🥹

The trial is not in the open adoption. It’s in the heartache of seeing disaster befall a birth mom who had tried her hardest to at least stop her daughter from following in her footsteps. In their bed at night, she’d warn her, even telling her to only get a boyfriend after university. She wanted her to escape. But she hasn’t.

When we’d thought they’d be able to stand alone and move out the one small bedroom they’re in in a relative’s home, we’d offered to buy birth mom’s child a cot. But then, they can’t move. At least they can share food and get help with baby care in their relative’s house, though birth mom has to pay a baby when she goes to her part time waitressing job. So they’re stuck.

Last week, we did a video call when birth sister was admitted for an induction due to hypertension. My heart broke as her already stressed mom wept as she asked if it’s possible for us to still send the cot. She said they’d move some furniture out the bedroom, she’d sleep on the bed with the daughter’s baby and then her baby would sleep in the cot.

And so, I sent a cot, mattress and sheet which they collected yesterday. But remember, giving birth to my daughter is a secret. The relatives only know of teen daughter and current baby, not about my girl. So I asked her who she told her cousin (who has a car and went to collect the stuff) I was.

Constantia is one of those extremely affluent suburbs.🤣🤣Of course, I’d have just said that we are friends because white lies are still lies in my eyes. But I can’t foist my principles on others so…Constantia!? I wish I could afford a house for all eight of us in CONSTANTIA!😅

PSA: Psoriasis on Black Skin

Grace by any other name1 Comment

I knew it couldn’t be a birth mark. Aren’t you BORN with birth marks? This was sent last year after I saw a rheumatologist who believed it was something else. I believed HER so I sent this to my cousin telling her that I thought I might have found the correct diagnosis.

I really did try scrub it off many, many times. I even used various creams, like my steroid creams..nothing got rid of the patches. But I knew it wasn’t birthmarks. Why both ankles?

When my female rheumatologists (I can’t say all do this kind of exam because the first one didn’t) examined me, they both pounced on the patches and asked me what it was. I told them each that I had been confused too as they had appeared decades ago and I thought maybe I had not been washing properly🤣🤣 then realised it wasn’t dirt but nothing would get rid of them. They each immediately said “Psoriasis. And if it’s psoriasis, we will know when you start biologics as biologics can treat psoriasis.”

Treated? I’m going to put this on my YouTube as well. The days I spent online when I didn’t believe the dermatologist, searching for psoriasis and unable to find my type on Black skin, thereby convincing myself that it was not psoriasis…This one needs to be shared in case someone else has a case like mine. Not because psoriasis on its own is bad. But if she had diagnosed me with it, and then asked me if I have joint pain, we might have then at least diagnosed something like Ankylosing spondylitis which can come with psoriasis, or even psoriatic arthritis. We’d have been closer to the truth and I’d have seen a rheumatologist sooner.

It matters. Knowing what it is matters.

So yes, this is my Public Service Announcements. Psoriasis can look like this. Both ankles are clear. Been on and off biologics since July and fully on since January 25 this year.

Thank me later😉

Michael Jackson

Grace by any other name2 Comments

I am not saying anything about his alleged victims. I am not saying whether he was or was not a man stunted in childhood and wishing for what he didn’t have, but showing it the wrong way. I’m not saying whether he’s innocent or guilty. Only God knows…

What I know is that many of his songs were my life. What I know is that when my high school friend and I made up dances to his songs and I was told to take up dance professionally, I felt seen. I was not a no good.

One Voice Children’s Choir did a cover of this song so it popped up in my music app as a new release. Of course I listened. And it too brought me to tears just like the 1993 original has ever done.

From the beginning, from the day this song came out, my heart felt it. I don’t know who the writer is. But they were speaking my soul. I wanted to be loved, held. I loved the little one doing sign language. It was everything- y’all know I wanted to adopt since I was 10 years old. I wanted to imagine having a loving mother and brother. And this particular concert, where the ‘angel’ comes down?? It always made me bawl too. I wanted, yearned for someone to hold me. I mostly used to recover from surgery alone at home. Nothing as lonely as not being held when in extreme pain. I was reminded of this song last week because a young girl was asking her mom to stay home with her and the mom was loudly telling her that her family responsibility leave is over and she should be grateful that at least she took her to the doctor. There was no, “I’m sorry, I do want to take care of you.” That’s what killed me. It was like the poor child was asking for something she should not have been asking for- being a pest.

I was that little girl at the Clicks pharmacy. It hurts. Lonelienss while in the company of those who outsiders think is caring is a painful kind of loneliness.

The most heartrending lines are “But I’m only human” and “I get lonely sometimes…” Even in 1993 they broke my heart. I wished I could protect from his money grubbing parents. But I wished I could protect myself too.

I get lonely sometimes.

I’m not a super anything, I’m only human. And oh, I want to be held.

Thank you, One Voice Children’s Choir for reminding me of this song and making me go search for it. My God will come with ten thousands of His angels. Real angels. And they will hold me and every heartache will disappear. Every betrayal forgotten. Every wound healed. My body and my heart will be like His- perfect.

Until then, every now and then when I need to let out my emotions and cry, I will listen to this song. (Sorry to those who are offended by some of the dressing or dance moves. He wasn’t a holy roller SDA. But his songs touched this heart of mine.)