Tag: chronic illness

Wins

Grace by any other name2 Comments

Since Thursday, I’ve been consistently limping, walking off because of the stiffness in my pelvic bones. I was even stumbling because I struggled to always lift my feet high enough off the ground.

This video was yesterday, Saturday morning. I had never watched myself before. My husband did once complain that while he had a break on a work trip and the teens were at exams, he had a peak at our security cameras and he didn’t know where I was going, about to take a walk with the small four while clearly limping.

Since Thursday, I’ve slowed down. Pain extreme. Exhaustion bad. I didn’t even reach 9000 steps on Thursday yet my usual average is between 12000-14000. Yesterday was worse. Despite all the pain meds, I didn’t even get a minute during which I could say, “I’m pain free.” It was hell. The pain was consistently an 8 out of 10. You couldn’t ignore it.

Today, for three and a half hours, I had almost no pain. I could fully ignore it and only felt it if an inflamed area got bumped!! It was lovely! I was so scared that yesterday heralded days or weeks of no relief whatsoever.

That’s a win for me! I know the nights are bad, and the mornings too. But I’m hoping my day tomorrow will be like today, at the very least.

Second win.

I haven’t heard her calling me mommy in a year. She stopped even saying, “ Dinosaur” for her dad. But she is still saying words, naming the foods and beverages she wants! That’s so different. All other times, her words would disappear for months.

Also, if you listen carefully, she whispered, “Doll” twice! It’s not the first time she completed or added to something I’ve said. As she watched me pouring cereal into a bowl for her, I said to her, “I put it in!” And she added, “ Into the bowl!”

Other things have stayed the same but a bit better too! I noticed that a “blister” she’d had on her right hand was now looking more like an infection so I asked her dad to take her to the doctor yesterday. Honestly, even if I didn’t have AS, I wouldn’t want to take her. She experiences so much suffering! Things scare her, she wants to leave and not wait, she wants to pull me out the doctor’s rooms and doesn’t want to be examined. It’s traumatic for both of us-her being ‘tortured’ and my dealing with her very big emotions while wanting to cry along with her.

Her dad was also not feeling up to it because of her screams and cries and how helpless he feels. He said he’d take her only if or our eighteen year old son went alone.😅I chose my son, who was NOT enthralled with the idea.

She came home screaming.

But guess what, she didn’t scream going in. Didn’t scream or even want to leave while waiting to be seen, and except for when the doctor wanted to measure her height, she allowed him to do other checks!! The ONLY reason she came home screaming was because near the END of the appointment, she spotted a wooden piece of art that she wanted to take with her.

And while waiting for the appointment to start, she spotted her favourite calming object- a plant! Her dad asked, “What’s that?” And she actually answered!! “It’s a tree. It’s leaves.” And she tried to pull her brother’s hand to pick it up.😅Thankfully she didn’t complain when the answer was no.

All in all, it was the best doctor’s appointment she’s ever experienced. Her anxiety and anti psychotic meds are helping! (We still get angry cries over wanting things to happen that can’t ever happen.) I was right that she needs oral antibiotics, and her brother came back much happier than when he left. I mentioned the being right thing because I didn’t want to send my husband on a fool’s errand and have him return telling me I was being worried for nothing.

Maybe one day she will answer all questions and tell us her thoughts and not just blurt out random words like, “ Tiger!” out of the blue when she does speak. Maybe one day she will answer more questions than she can’t. Maybe one day I will know that she UNDERSTANDS me when I tell her I love her.

Maybe.❤️

PS. The doctor asked if she didn’t need Ritalin or something because of how hyper and all over she was. I am so vindicated! Not that my husband said I was wrong in thinking she probably also has ADHD, but it felt good for a professional to wonder if it would “not help calm her down.”😅 We have over a year till she’s even eligible and I don’t even know how we’d assess her for ADHD given it’s all about ability to focus on tasks and how quickly one loses focus and the weak points that show typical learning disorders found in ADHD. She does not stay still! At all! But, we will cross that bridge when we come to it!

I Summoned the Devil

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I summoned the devil. And I knew I was about to! But, I’m desperate. And have no clue what exactly I’m waiting for from the rheumatologist’s office . Are they going to appeal? Are they done with helping me? And the last time I asked for info a month after the original request for change in meds, I was reprimanded like I’m some irritating dummy by her nurse. So I won’t be asking.

Back to the devil. This devil is an oral tablet called Sulphasalazine or Salazopyrin. I emailed the rheumatologist asking if I can try it for my fingers and other peripheral joints. See, my first rheumy gave it to me in January and it did nothing. In May, the next rheumy said they didn’t know why I’d been put on it and it alone seeing as my worst symptoms were my spine and SI joints, which Salazopyrin apparently doesn’t work on. It works better on the peripheral joints – fingers, wrists, feet… Given how bad things are, I figured, “Ok, I’m getting worse. I have no clue if the rheumy’s office is appealing nor what the way forward is because they ignored my first email saying I’d be waiting to hear what the way forward is. So, let me try Sulphasalzine as I have some in my house and maybe it can reduce my suffering. “ I was really upset the night my HAND of all things, woke me after a terrible sleep anyway. It is just such a small part of my struggles, so it was a personal affront that it- not my back, shoulder, neck- decided to scream out that night!

This is now war!😅

I emailed the rheumy asking if I can try it, and she said yes, and sent a script. I knew what I was letting myself in for. It’s so horrible a medicine that you have to take it super slow before you get to a therapeutic dose which is four tablets a day. I suffered starting on two tablets last year- headaches and urgent diarrhea -so yesterday and today, I only took one. And even so, the side effects have begun.

I knew I was calling more suffering upon myself. And I know it takes six weeks to kick in once on full dose, so I’m giving it eight weeks before I assess if I should continue.

Send help. 😩😉

ETA: As I was sending the script, I saw that my current rheumy has very different instructions. She actually DOES want her patients to start on one tablet first. Heh heh, I’m not as clever as I thought. The first guy just wanted to overwhelm me too quickly

No News-Saturday AS Awareness Day

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Faking being ok even though she told me not to

I’m seriously going to use the last three injections in my fridge!

Medical aid finally wrote today. I’d been waiting and waiting and had planned to email the nurse to ask what’s up.

Well, what’s up is NOTHING. Medical aid wants a letter of approval from the rheumatologists’ panel, and information from my doctor about what medication I’ve had and for how long. THEN they will decide if they approve or not.

This was not the email I thought I’d be reading when I opened it. I can’t even say I’m waiting again because I don’t know if the panel has met. I don’t know when they’ll meet. I don’t know why my doctor didn’t send the info together with the initial application anyway. I’m disappointed, folk. I hurt. I hurt. I’m getting even less sleep than ever. My neck, my shoulders hurt at night on top do the usual back and elbow pain… Today, I drove my daughter to her final Biology practical exam prep session and the entire way there and back I stopped myself from telling her that my foot hurt every time I moved it to brake or accelerate. The rheumatologist had felt it even before I consciously suffered from it-the damage and swelling in the front of my foot where it joins with my leg. I have NEVER had that area that sore before while driving, driving was actually ok for the foot and only bad on my SI joints and lower back.

Well, all bets are off. It’s like Satan has slowly been letting out bits of the fiery pit and sending the flames to me and now it’s getting hotter and I didn’t know it could. I know I always wonder how BAD someone’s pain is when they complain. It’s not like I can feel theirs and they can’t feel mine. Maybe compared to mine, it’s virtually nothing. Maybe it’s the same, but telling me you’re in pain ain’t enough. Is it keeping you awake? Can you ignore it and it remain in the background of your day?

I am suffering incredibly especially today after the long drive to the school (Let’s just say they were all shocked to find out where we live when my daughter mentioned it, and wondered about heavy traffic coming in), after waiting for class to finish, and the longer drive back. (Longer due to traffic.)

I already can’t sleep- pillow or none- because my neck and shoulders are fully in the mix now, not only my elbows, fingers and si joints.

I want to start treatment. I want to be better. I wanted to do a movement activity with my little ones this morning but couldn’t, I would take a step and leg would give way and an unexpected bullet of pain would streak through my SI joint and cause me to yell in pain.

I need the medication.

I don’t know when the panel will meet. I don’t know if they’ll agree that I need the mediation. I don’t know when my rheumatologist will do her part.

I just know that I feel like I’m losing my mind.

Please God, help me. I don’t want to buy a walking frame because of my leg that suddenly goes on a break when I need to use it. But I don’t want to get used to limping and shouting out unexpectedly. I don’t want that to be my norm. I’m too young for this. I can’t do this. I will go insane. So, please help me.🥹

And no, there’s a reason we are stopping the injections I was on. If I do end up desperate (I still have till Saturday for my “No injections of biologics till two weeks past surgery” rule to take effect, then I’ll inject and be worried that it will again reduce my immunity TOO much and I’ll catch a sickness and then I’ll get approval but be too sick /still sick and unable to start. Not that I know how soon my pharmacy will have it. They don’t stock biologics as not enough patients have them to justify them buying them without knowing there will be a patient who needs them. It took two weeks for the Enbrel to be in stock at my closest pharmacy.

What do I want you to be aware of?

The patients who are so desperately in pain, who have ‘failed’ their treatments and know that tomorrow will be even worse than today. I looked up voluntary assisted suicide on Sunday. Someone with AS did do it. He was in Canada. His loving wife cooked lovely soup for his last meal. I want you to be aware that there are some of us who are like that. So desperately aware that only death brings release- certainly not night time no matter how many pain killers are in our system.

I haven’t reached that stage yet. I’ve only failed one biologic. But I know the PAIN and wishing for death so it finally ends. We aren’t only the successful people like Whitey Basson for whom AS is almost meaningless. We are ones who feel like we are dying daily, (And whose lungs actually are.)

The Club

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😅

I shared the above this morning in the SOP Reading Club that Claremont SDA Church has formed. I hope it will be a blessing to anyone else out there. A blessing and an encouragement.

Jesus was never cold and unapproachable. The afflicted often broke in upon His retreat when He needed refreshment and rest, but He had a kind look and an encouraging word for all. 4T 488.1

Good morning🙏🏾

This reminded me of the patience mothers also ought to have. I recall from
AH how “frequently the call of mother, mother is heard…” and the mom has to stop whatever she’s doing and patiently and kindly be interested in what interests the child or care about their little woes even if in mom’s mind, it’s nothing.

This is so hard especially when sick. Like the disciples, I’ve even heard my older children telling my one twin 4 year old daughter to not come when I’m resting, but she will insist, “I need to see Mommy! I want to talk to her.”❤️🥹So I often yell out that it’s ok, she can come into my bed.

When I told my children that my recent appointment proved that my pain was truly increasing as things were getting worse, my 17 year old exclaimed, “But you’re always so cheerful! I didn’t know!
Mom, you really don’t need to force yourself. It’s ok to rest more and to not be so happy.”😅

That’s what matters most. That THEY feel seen, loved, cared for and secure. I want them to see the Saviour’s love through me.

I will apply that to whatever we are involved in and in whatever sphere we are in. May we ever be patient and warm as opposed to “cold.” Welcoming even when we need “refreshment and rest.” May our “they” that is watching us see Christ’s love and patience through us.

Yesterday was awful. I am usually awake by around 5am to study God’s word-on weekends. And during the week it’s 4am. (Mainly because my husband wakes at 4am so he can also do his study before going out to run before work.) It gives me time to try get the stiffness out my bones so I can exercise a bit.

So, I woke up. I couldn’t shake the pain and stiffness. 6:20am I was out the bedroom and moving but still, the stiffness and heavy pain persisted. You know how AS includes swollen bone marrow? It’s as if every single bone in my body was struggling with it, not just my pelvic bones. (Maybe they were! I just only have had MRI on my pelvis and that’s where we know for sure my bone marrow is swollen.)

By 8am, I was struggling. I struggled to take bedding off the bed. Then I wanted to lie down. On the unmade bed. I didn’t have strength. I am now always using the little ones to at least put the laundry into the washer for me- I did two loads yesterday/ usually I do three. We are eight! We have a lot of dirty clothes especially when there are ADHD girls who soil their clothes daily. Badly soiled. Who forget to wear the T- shirt they put paint on that I now keep as their ‘eating top’ so their clothes don’t get food on them. My poor nine year old eats like she needs a huge bib. But I’m too busy to remind her at mealtimes to put it on before she starts eating.

I did go grocery but there too, I struggled. I had to lean against the till behind me. My word, yesterday was horrendous and I’m still unable to bear weight on the worst leg even now at 5:16am. The pain was indescribable. Just folding four pieces of dry laundry killed my shoulders too. I wanted to weep. What is the point in being alive if I can’t do much?

I’m SLOWLY tightening my nine year old’s locs. I just can’t stand long and the fatigue is all encompassing. So, there I was in the evening standing doing her hair before evening worship. I’m in the left bottom corner of the security camera.

I was weeping silently. Before this, we’d been listening to One Voice singing I Can Only Imagine. It was already emotional. Just to imagine myself able to RUN to God, able to kneel at His feet without pain, imagining all of us in the family-me and the children-made whole…

See, I’d made my for old pictured at the top of this post, cry. Like her twin who’s hated us touching her hair forever, she’s now also not into her hair being washed. But it has been too long. I started preparing her last week for a b hair wash. She kept refusing. My teens had said they’d do the hair so I don’t hurt myself. Except my poor angel was too stressed and was crying and her sister just couldn’t do it. I went into the bathroom, told her I was just going to wash her hair with plain water, it had been too long, and just water, no shampoo THEN water. (Hey, anything is better than nothing.) The tears rolled down her face. We have those little rim cap things that ostensibly prevent water flowing into their faces (doesn’t really do that very well but it’s better than nothing) I asked her sister to hold the face cloth over under the rim of the cap thing so no water rolled down into her eyes and just ran as much water as I could over her hair, squeezing out and scrubbing the scalp as much as possible. But the tears came. “Mommy, why are you doing that. Please stop, Mommy.” It was awful! I felt so sad for her.

I could not wash her twin’s. I was in too much pain by then. So the teens will do it in batches-mostly really just using a very wet cloth and shampoo for her because she’s even lied about to handle her hair being touched,

It was a combination of pain, heartache and hope that led to my secret tears as we watched. I truly needed to feel raised because I was down. It was emotional, watching my not very talkative angel standing mostly still sound while the songs were playing. She too feels the emotion in the songs so doesn’t do her usual racing around.

I watched videos of dads talking about their autistic children, the dreams they had that they’ll never be able to fulfill. Playing with their children, playing ball…It was truly cathartic to cry as they too wept. I get my support and validation off my feelings from the emotions other parents are feeling that mirror my own. The suffering when the world hurts the child- light, noise, people, whatever… It’s a terrible worry, not being able to make life easier for them.

And so, I wept.

Usually I go hide in my room at prayer time as sitting with everyone during worship calls my daughter to come sit on me which strains my bones. Add the womb pain and I definitely haven’t gone to pray in the evenings. But every evening, she’d come running anyway, insisting that she has to talk to me.😅So I decided to stay so she doesn’t feel the need to burst into my room. It worked. She got her fill of me and didn’t follow me into the room.

And my heart! She kept trying to sit staring at my face while hugging me with one arm around my neck. It felt kinda weird too, being stared at while singing!😝But it just showed me that yes, I’m unable to do as much as I would have liked, yes I had even googled to see if anyone had ever done assisted euthanasia due to AS suffering (found one in Canada) but I couldn’t leave this world yet to rest even if I wanted to. So I took a photo.

My children need me in whatever state I’m in. I hope we can all have the energy to bear our children while sick. To love them when we too need loving and nurturing. She doesn’t care that I didn’t finish putting her clothes in her wardrobe, that I didn’t finish ironing her underwear. (We have spiders on the washing line. Almost everything gets ironed. More so after Ammy’s terrible hospital admission due to an infected spider bite) She just wants me. And I’m here. That’s all she needs. And so while I wait for release from this suffering, I wait knowing my children would prefer it that way anyway. Waiting. Not yet released….

Radiothermal What?

Grace by any other name3 Comments

WARNING- FEMALE ISSUES AHEAD

Gynae stuff.

Read at your own peril

Hint- The woman in the Bible who touched the hem of Christ‘s garment.

Since my uterus misbehaved and got itself into early menopause, I’ve not been able to control uterine bleeding. I go on the Pill but it’s dangerous to do for long and as soon as I go onto the placebo, the long bleed starts. I try stay on the hormonal pills and skip the placebo- pharmacy won’t let me. “It’s too early… Yes, I know the doctor doesn’t want you to take the placebo pills but the system won’t allow us to override the timing.”

Try Mirena implant in my uterus. Bleeding continued on and off for four months anyway. After month five, I made an appointment and got rid of it.

Tried Activelle- an HRT- worked okish but ..bleeding continued for four months. See the theme? My hot flushes were disappearing though.

Oh. Did I mention the side effects? I think I did do so in another post, but let me repeat them for this post. No libido whatsoever, discomfort during the acts, terrible hit flushes- “Mommy, why are you sweating so much?” And waking in a cold, wet bed that my sweat soaked.

Then tried a different birth control pill. Thrush. Ugh. Off I went. Tried a different HRT. It was ok for the first four months! Only four days of bleeding. And then suddenly, 23 days ago- it began and has not stopped. Longest bleed since this all began.

Next step? Medication to sort it out. And surgery. Radiothermal ablation (burn the uterine lining to cause scarring which will hopefully stop the bleeding) but first a hysteroscopy (camera to see what’s going on inside) and biopsies of different areas of my uterus for testing-ovarian and uterine cancer come with bleeding in menopausal women… And then the actual ablation and then another scope to make sure nothing has gone wrong (like burning a hole through my uterine wall) and then we wait and see.

Day before my 21st wedding anniversary. Not that my husband will be here till the evening of the anniversary anyway. Traveling overseas for work…

How do I feel?

Scared.

The thought of them burning a hole into me isn’t exactly a comforting thought. But it is one of the risks.

The thought of ‘BURNING’ me is not a comforting thought!

Having to go off Enbrel AGAIN is not a comforting thought! I did my last injection for the next four weeks today.

Of course, it COULD be cancer. But I’m pretty confident that like so my other biopsies and tests, this will prove to NOT be uterine or endometrial cancer.

And if the ablation doesn’t work to stop the flow- total hysterectomy.

That’s also not a comforting thought. Have you seen the hectic obesity and heart disease death stats after hysterectomy?

Not comforting at all.

I would really love a break from this life and body. Just a few months in a healthy body…If wishes were horses..

Instead, I have to ask my pulmonologist to give the anesthetist my lung function report. Talk about complicated body!

I’m thankful for a sisterhood that understands and cares. I’m nervous but hey, I haven’t died yet so I probably won’t.😉

Yes, that’s one of the risks.

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

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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.

Unless You’ve Cured It…

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My church is big into being healthy. (Kinda) The serious Advevtists prefer the use of natural remedies over drugs, which makes sense given drugs can damage and kill and if used properly, natural remedies are safe.

Except they aren’t always effective. Never more potent than in the messages of an adoptive mom of seven who told me she regretted having tried natural treatment when she first heard she had breast cancer. It was treatable. Stage 1. But she went natural and natural failed her. By the time she realised that all she had done was to give the cancer a chance to speed through her body, it was terminal. She was dying.

She died. And a second of her adopted daughters went on to die by suicide.

I saw the other end. Many tumors throughout my niece’s body as she has the scan. The screen lit up as she just oblivious to the danger. Stage 4 neuroblastoma. Terribly dangerous childhood cancer. Other children lost their battle. She lived. Infertile probably. And shorter than she would have been. But, alive. She can leave a positive mark on this planet.

And that’s the essence of where I am. I was your carob- eating, no sugar, vegan friend. But it didn’t stop AS raging on through my body. I tried everything, not knowing there was nothing. No cure, though it can go into remission (ie. Dormant) for a while. I want to leave a positive mark on my children, specifically my younger ones. My older two will remember my teachings . My younger four, nope. They still need a present mom.

Don’t tell me to use castor oil packs when you have no clue what disease I have. Don’t send me to videos of a woman who has never had my disease, nor treated my disease. Don’t give me unsolicited advice and remedies. I am the expert on my disease…

Give me a hug. Ask to clean my house. Baby sit. Check on me. Research the disease.

The arthritis has increased in my jaw. I wasn’t able to open and chew properly when I tried to eat grapes yesterday evening. Shooting pain wakes me at night. You bet I want drugs. Effective drugs. I owe it to my children.

That would be prideful of me

Grace by any other nameLeave a comment

Around early 2019, a younger woman I met -in her 30’s-asked how I was. She’s one of those who means it when she asks, so I told her that I was in the middle of an IBS flare, and wasn’t in a good physical space due to other long standing issues. Which I now realize are due to AS, or are common co-occurrences-like the IBS itself.

Her response was along the lines of, “You sound like you’ve accepted that this is how your life will be. No! God doesn’t want you to be sick! He desires health for all of us. You must pray…”

That would be presumptuous of me. And prideful. The world is full of suffering of every kind. Bombs, tribal wars, earthquakes and awful diseases. Ever seen a little child suffering from EB? Does God “WANT” little children to be sick? Does He want people to have cancer? If those people, especially the innocent children, have to deal with suffering, why not me? Why would I not accept suffering when they have to too?

I’m not more important or less undeserving than they are. Good, bad, evil, perfect, selfish, selfless, nobody is going to be guaranteed a life free from trials. Why would I expect preferential treatment from God? The same God Who bears long with sinners so that they repent and go home to heaven one day, allows the world we are in to do its thing.

Only heaven will be like heaven. Only in heaven (and the new earth) will God’s will be done. By all of us. It’s not like I’m perfect, why would I expect a perfect life? Until then, His grace is as sufficient for me as it was for poor Paul who begged Him to remove the “thorn in his flesh” many times.

Paul prayed for healing. He didn’t want to be sick. But God had other plans. Anne so Paul’s prayers changed. I stopped praying in 2012. I remember it very well. We’d gone to the shop and my back was killing me. It wasn’t even a long trip. Or was only shopping for a family of four who all ate the same things -it was quick. But by the time I got into the car, I was in agony. I silently asked God why He hasn’t healed me. Why none of the physio helped. Why He wasn’t taking this cup away from me.

I wept and pleaded as never before. I told HimI wanted to be a more present wife and mother. I wanted to visit sick lonely patients in hospital. I couldn’t when I couldn’t even sit in a car or be upright without pain. But He didn’t heal me. I gave up. I didn’t deserve to receive what Paul, the great preacher didn’t get. I didn’t deserve what Christ Himself didn’t get. They didn’t have lives free from suffering, so why should I? I stopped pressing for healing, but have never stopped praying for strength, for grace to suffer without lashing out. For a sinless life. THOSE, I know for sure are His will for me on this plague-filled planet.