Tag: ILD

We Did It!

Grace by any other name1 Comment

All of us did it! Every sister who asked almost every single day how the day went, if there was any improvement in the children’s challenging behaviour, if I was able to sleep (No), if the twins slept (We’ve double diapered Reo and she’s been quiet. And so, her sister has also stayed asleep.) Plus she’s on meds that help with sleep. Oh yes, that.

Let’s get to that first. Last Monday, I took Twin A, Naynay aka Neilo aka Oreneile for an assessment. I’d filled in the Connor’s questionnaire as her teacher and my husband did the “parent” one. I also did the M-Chat assessment. I added all the observations of autistic behaviour I’ve made over the years, and emphasised the current challenges- I can’t teach because she interrupts me, she thinks she’s also the teacher and takes over, her violence that comes extremely unexpectedly when nobody is even doing anything that should cause harm or she has not asked for anything we have denied… Her irregular speech errors, “What are you going?” instead of, “ Where are you going?” And, “Where you went?” And, “What are you doing a?” Or, “What are you doing the?”

The extreme hyperactivity and inability to focus. Insisting on doing formal school work (We believe in delayed academics), but saying the work is boring and moving pages ahead, or doing her own thing like writing letters on a page teaching her letter recognition when nobody told her to. Her taking over and teaching ME… And her interrupting her siblings as they learn.

I mentioned the excessive role playing. She don’t play pretend, she becomes a character she has learnt about and is that person in her head. “I don’t want to wear a top. Pharaoh doesn’t wear one!”

That day, she decided she was an elephant. I didn’t even try talk her out of it. It was (is) part of her constellation of symptoms, after all! And after her head was messed, weight taken (She hasn’t ever seen him. She doesn’t get doctor sick, she goes big/breaking her elbow jumping on her bed and then her arm the following test jumping on a trampoline and falling off both times.) She has horribly changing moods-laying out and hurting others for no discernible reason after having just laughed with them. Very sudden and distressing.

I also mentioned her prodigious memory. She had the memory of an elephant!! Can be so caring. She kisses my back and prays for me. She tells me to rest. She tells me to lock my bedroom door so her more violent sister doesn’t come pull me everywhere and anywhere, stacking me when I can’t give her what she wants.

After an hour observation, talking to her, talking to me, witnessing her busy-ness and sudden requests to wash her very clean hands, everything showed that she indeed she has autism, ADHD, extreme pathological avoidance. I was shaken by the word ‘extreme.’ I guess in so used to everything being too much that I didn’t realise it really was too much! Every single child is on the extreme when it comes to behavioral challenges that leave me so tired and alone that I b never paused to think, “Why is out PDA so much worse than it could be?” It’s more the older two who exasperate me because I know things could be better, they would be helpful if they were neurotypical and their actual age developmentally. Why suck ink and spread it everywhere on the floor, on your vest… Why throw clothes out the window and make awful messes every single hour?? Why resist so much? Why the screaming? Why does their sister pull only me so much and.. and why can’t I ever REST???”

We’ve begun on a very small dose of ADHD meds and mood stabilizer which also happens to boost sleep. Both girls are on melatonin, SleepVance but we were still struggling. Waking up for HOURS and being loud about it.😆 She’s also on allergy meds as us her minimal talking twin and minimal talker is on another med that send to help with sleep as well. We shall see how to shift things around. So far, no positive change in her behavior.

Back to us! We did it! Yesterday was injection day again. My regular commenter who once sent money even keeps track of the days as the injection day draws in. I’m the one sticking the needle in, but they are the ones who show care and concern every single day. The one who listens to my cries when in do open up. We did it! Four straight months-NO STOPPING!!! )With Enbrel I never even reached two months!

I don’t know yet if it’s starting to work. This just could be the end of a flare and it will become extremely bad again. The fatigue (extreme exhaustion and wanting to lie down began again yesterday after a few days of my having to remind myself to calm down because doing too much would trigger n more pain the next day.) But.. I had a better week where I didn’t beg to die and pain meds actually did reduce the pain a bit. But since yesterday morning, that has changed. Still not bad enough to wish to die though, so I’m pretty chuffed for now. Praying I get better. We got to a whole four months! Thank God for that privilege! I hope this is the treatment that shows this all down and helps my lungs and kidneys too.🙏🏾❤️

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

True Love Sees

Grace by any other name2 Comments

True love bears your burdens and is solicitous.

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 already tired! 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.