Better Injection!

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I’m so, so thankful! Last week, I had that horrible reaction not even an hour after injecting myself. I brought the injection day forward so that I’d hopefully be ok by Sabbath – my poor middle two were extremely upset at not going to church.

I don’t get anything. No reaction. No welt. No diarrhea. No excruciating burning pain! Nothing! I don’t know what tomorrow will hold, but I know that today held ME!

AND I had a whole hour of no pain. I could not only tell my middle two what occupational therapy exercises to do for their core, but I joined in with them. My sweet eight year old asked in shock, “MOMMY!! What are you DOING!!??”

Priceless!

Enbrel number 3. Done and dusted. First time injecting into my belly. I’ll be better at it next time.

Yikes

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Injection number 2 was not as great as number 1. The meds stung going in, whereas the first time I didn’t feel the liquid at all. The welt was not as bad and the following day I didn’t swell there unlike last week.

But an hour later, I felt like a volcano. Sorry for the TMI but this just might help someone else who gets this reaction. They’ll know it’s not only them. Just under an hour after I injected myself, I needed the loo for a number two if you get my drift. But before I could get up from the loo, I felt this awful burning fire going up from my groin and making my belly feel like it will explode.

Fire spread up to my navel, then up to my sternum. I was in excruciating pain, I almost hobbled out to my son to ask him to take me to hospital. I’ve never felt that before. I was on fire inside. And the movement I had had was very loose. Sorry again…

I couldn’t bear the pain yet didn’t feel I should go to the hospital. I googled kf Enbrel can cause stomach problems and found this.

What would they do at hospital seeing as this was normal anyway? So I sent voice notes to maybe five people, and begged them to pray for me.

One told me my voice frightened them. A male. Another asked if I wasn’t sure I shouldn’t go to hospital. My mom in Zimbabwe-she felt utterly helpless and asked where my husband was.

Speaking of husband…He’d commented that it was my day to do my injection and asked if I was ready. I told him, “You know, I don’t know. I don’t know anymore. I need to try. But some with reactions get worse with each injection. What if it becomes worse than just the thigh issue and mild headache?”

Boy was I right! But I didn’t expect it at all! Not this! And here I am blogging two days later and my stomach isn’t doing great.

Time will tell…

Thankful Thursday- Help from the Driver

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Two proud sisters! Their big brother got his driver’s license this week. And boy does this household need it!

The pain meds build up and cause constipation. So after being awake since 1am due to pain while on them, I’ve taken a bit of a break from most. Imperfect timing. Out of 6, I’ve only taken one this morning, and I can feel the difference.

I can’t fake bubbly today. So I asked him to go buy the salad that is meant to go with what I’m cooking, to buy my gluten-free non-bean protein, and I’ve given him the go ahead to take everyone out for a drive (Second time this week!!)

I can’t explain how privileged I am to have a car. This is Africa. I am Black. I think the last stats I saw said only 29% of Black women have licenses, and I know the one awesome sister I helped get a license doesn’t have a car. We’re hoping she’ll get a job that requires someone who can drive the company car- which is what quite a few jobs in her field put in their adverts. Car =privilege.

A son who can drive for me is a blessing.❤️ I can rest and ask him to run my errands. I can rest and he can take his siblings out. In summer I have visions of them going to the park.

But also, I have hope that by summer, my biologic will have started taking effect and we can all go.

Speaking of which, is there anyone out there who’s seeing a rheumatologist? Is it normal for your doctor to start you on a life altering drug with powerful side effects without seeing you and discussing it with you?

My gynae did that… I got a text, “Good day, you are menopausal. Come collect your script…” and it didn’t sit right with me. You can imagine how odd it feels when I’m now injecting myself! No discussion about potential side effects? About what to expect? About when I should start to feel relief? And what to do if I feel none by month three? No discussion about what is normal and doesn’t need me to contact the Enbrel nurse, or what I should ask her about..? No discussion at all? And no reply to my telling you that my pain is not at all under control? Not even a polite, “Girlfriend, this is the highest dose we can give you.” Or “Come in for a cortisone shot” or “Maybe you should ask your GP for steroid shots..” Just silence.

It’s unsettling.

So, I’ll focus on what I CAN control. I can control the amount of mothering I have to do today. Today, I can rest a bit more. Today, I can enjoy the fruits of our labour (I’m petrified of being driven by a learner but I did it once) and our money.

He passed his license this week. On a cool Sunday morning. I’m thankful.

Don’t Adopt?

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(Copied from my other page)

No to Adoption Because of My Children???

I am livid. I have a slow burning fire within me.

I am scarred, my heart seared forever by the 16 year old girl in a wheelchair and on oxygen, stuck in a children’s home who said that I was doing a marvelous job with my adopted special children and that she desperately wants a mom too who will love her and be kind to her.

“We have dreams too. We also want to be loved. Please don’t give up on us even though it’s hard.”

And then you tell me you told your friend not to adopt an innocent 3 month old because you look at MY children and don’t think your friend can handle it?

Why aren’t children like mine worthy of love???

Don’t I look happy??
And more importantly, don’t THEY?

This goes to everyone out there who has whispered, “Maybe you should send them back, they’re causing a strain on your marriage.” (No, THEY weren’t.)

Goes to all the people like someone close in my family who told me to send Micaiah back “and get a normal one.”😡🙄

Every single child is worth expending effort for. Physically unwell. Mentally unwell. Disabled. Neurodiverse.

There’s a South African mom I emailed who had adopted an older child and a younger sibling. The older child was so violent that they had to put him in an institution. But she WILL NEVER REGRET BECOMING HIS MOM. In her words, “He knows he has family that loves him. Isn’t that enough for HIM? Even though we have to visit him instead of housing him, he is ours and we love him.”

This baby’s bio mom is not interested in the baby AT ALL. Her other children are being raised by a long suffering granny. Her sister and her uncle are trying to find a safe, loving mom for the baby. 🥹

This baby deserves a mom. And I’m so thankful that like me, this friend has been unmoved by the ‘advice’ not to adopt.

We are moving ahead! The baby will get a loving mom and aunts like me who will love her even though we are far.

And thank you to Trisha Vellema who is looking forward to being the ‘spoiling’ aunt my children deserve. I once made a desperate plea for tangible love on their birthdays. It didn’t happen so I wrote to her directly. I will look to everyone who has loved me and I WILL find someone who will tangibly love my children too.

I do have a cousin in the Uk who loves them. And an unemployed SA friend who phones them. But in this world where children talk about presents, I want them to also experience presents outside of us-their nuclear family.

Because they all deserve it- adopted and biologically mine.

And so does every child. A 3 month old born from an alcoholic, and the 16 year old with serious medical problems.

If not us, then who?

It is HERE!

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It has been such a long wait! For something that I don’t even know will help! But, here it is. My Enbrel. After Discovery refused to find it because I’m not on the top two (read-most expensive) plans, we asked the doctor and nurse to proceed with an appeal (as they’d said the next step would be).

Next thing, I get a call from the rheumatologist’s offices saying that we’ll, an appeal would not work because of the plan I’m on.

“So, why? Why did we even begin the process if you already know the outcome? Why did you make me wait when you knew I was waiting for nothing!?” I wanted to scream.

But, I don’t scream.

She then proceeded to tell me about a cheaper drug than the Enbrel the doctor had said would be best to start with.

Again, my head spun. “Do you realize that none of you ever told me the cost anyway and you’ve always all assumed I won’t afford it? But if this is the best, then I might as well try! Plus it might not work anyway, or the side effects might be so awful that I’ll have to quit and try this other one. So, let’s just bring out the big guns before trying something less suitable. Why are you patronizing me by not giving me all the costs and siting for ME to tell you I can’t afford it?”

All this time, I’d been told by a patient that they are paying R5600 per injection. But when I asked for the cash price, it’s R5200 for the 50mg injection. (You can get a 25mg one but I was prescribed the larger dose.)

We can make a plan till next year. It will require lots of sacrifice in other areas, but it’s much less than I’d been told. So I told the office manager that we’d do it cash for now.

I don’t know. I just don’t like the way things have been done. The very first time I saw the doctor, she said we’d apply for the meds. And if they said no, we’d appeal, and then if no, apply for ex gratia funding from them.

Suddenly, all that has fallen by the wayside now that it’s time for her to write an appeal… I just don’t feel good. It’s like I was being fooled with empty promises. We’d already planned to take out a loan to fund treatment- don’t ask me how we’d repay! But they never asked. Just went an a path of assumptions and made me wait and fill in forms for no reason.

Oh well. Anyway! On Tuesday, I ordered the injections from Dis Chem and received the call saying they were there yesterday.

Having done IVF before, I know how to inject myself so I just asked the Enbrel nurse about what to expect.

1. If I have a skin reaction, no matter how mild it is, I should go to the pharmacy. If I ignore it, it maybe get much worse the next day and become a runaway fire.

I did get a minor reaction so I went.

Right now, it’s swollen but not red anymore. It’s a wider patch that has swollen than yesterday but no pain and itching.

2. I might get a headache.

I woke up with one but my life is a mess with sinusitis and hormone issues so who knows. Either way, it’s a very mild headache.

3. Extreme fatigue

I’m starting to feel it now, 21 hours later.

4. Some people said they don’t feel like themselves.

I feel like me. So far…

So, we wait and pray and hope. Not only for it to work and to work quickly, but for the windows of heaven to shower us so we can afford all our expenses. I know He is faithful. Two friends have sacrificed a lot already without even knowing how bad things are-one all the way in east Africa! I’m already going to cancel my pulmonologist visit due to low funds. We can’t do it all. Unplanned glasses, vision therapy, having to pay for the Enbrel ourselves, food, mortgage payments, my dad’s electricity, son’s driving lessons and car hire for the test.

Let’s see, people.

Watching..and praying.🙏🏾

Grabbing Her Attention

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My three year old is a huge sensory seeker. She won’t sit still for love or money! When I’m teaching, she’s either trying to pull me away to go get something to eat, or she’s spinning in circles or running around. She only sits for evening worship.

So, how do I get more of her attention? Because when she’s running, she’s also usually making noise too, vocal stimming, so I doubt there’s much she hears. And so I thought, “How about recording myself and teaching using video? That way, she CAN’T pull me and they all get to still hear my voice!”

I did it.

It has worked. And it works for everyone. The children answer my questions when I pause after asking it. And I get a bit of rest.

It’s a win win.

Special needs forces you to change how you parent. Screen time is ‘bad.’ But for my children, it’s the only way they really learn and remember things. And with dysgraphia a very high possibility for my son (the ‘inability’ to write, and my girl’s struggles with writing, typing is better. So, screen time it will be.

Are You the Healthy Husband?

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Every time I read an introduction stating that they are a spouse of someone with AS and want to learn how to support them, my heart skips a beat. It’s not common.

And I am very close to someone who’s living the very opposite of a positive marriage. Where even their child asks the healthy parent if they’ve asked the sick parent how their appointment went that day.

Why propose if you don’t actually plan to love, cherish and honour? This leaves us Bible followers trapped, because the only cause for divorce is adultery- according to the Bible.

So I’d be stuck. Stuck in a loveless marriage, and that’s what my friend says they are in.

Are you the kind of husband (or wife) who asks questions? Who asks how your spouse is feeling? Do you try make things better and easier? Or do they have to ask you? And if they ask, do you grant?

Or do you forget that invisible chronic sickness is still sickness and demand that they do much more than they can just because they LOOK like they can? Are you the kind of man who will sit there while your sick wife sweeps the floor at your feet?

We are all different in our desires as sick people. So I can’t tell you what to do. Definitely do study as much as you can about the disease or disorder-from your spouse, from others who are suffering. Ask then what they need. Try see where he’ll is needed and provide it before it is asked for.

When you got married, you promised to build a life with your spouse. Their life is hard. Sit with them in the hardness, don’t leave them behind while you sprint ahead in perfect health.

Thankful Thursday

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Finally!!

Looking like a king during assessment

Everyone around me knows I’ve BEEN saying my children have visual processing disorder. But a behavioural optometrist I took them to in 2021 said nope, they’re all good.

I had struggled to find even that practice, and her tests had SEEMED to be what I’d expect…

But this year, yet another educational psychologist stated that they need testing by a behavioural optometrist. The list of recommendations included the one I went to in 2021.

You can guess that I didn’t go back. I chose a different one.

And finally this week, it was confirmed. My children DO have visual processing disorder. The testing was very different to the first one, more involved, truly tested their prevention, discrimination, even tested their primitive reflexes (don’t ask me why. But it’s all linked to the brain!) and she was lovely to boot.

Conclusion? As expected, my sweet eight year old has more challenges than her seven year old brother. Her vision is not bad, but she will be getting low plus lenses for educational work only. It’s apparently THE thing for children with ADHD and other special needs that come with processing problems. They’ll both need vision therapy and at the end, the optometrist will decide if my boy needs glasses too.

The frame she chose

Man, it’s been how many years??

And I’m glad. It’s not good, obviously, but I’m glad to have found the right behavioural optometrist.

Now, we can start HELPING my children reach their full potential.

Stand Up and Be Counted

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There’s seemingly only one group in my country that deals with AS. It’s run by a leader who I’ll liken to Chairman Mao. She’s only nice to you if you belong to her ‘communist’ party, if you’re not a communist like her, too bad, you’re on your own.

Not good.

I posted in an international forum and the only answer I got was basically impossible to do here in Africa.

So, in this Facebook group run by Chairman Mao, people post asking about the cost of Consentyx, Enbrel or whatever biologic they’re going to be put on. Far as I know, biologics are medication, right?

But let’s back up a bit. I joined a WhatsApp group that was for my specific province. I asked a question about my eye- when it turned out I had scleritis. I got maybe two answers max. Only one answer was that I should see a doctor. (I’d asked if I should relax because it’s pink eye, or if it’s one of the eye afflictions we tend to have as AS warriors. I’d never had pink eye before so I didn’t know if my symptoms were it or something else. )I felt so ignored, unseen. It was lonely…Support groups are meant to support you.

The very next week, someone asked the same question. Someone who is closer to being communist than I am. The answers poured in, showing lots of concern and telling her to hurry and go to the doctor quickly “because you can’t mess with your eyes. It can go bad very quickly.”

I should have left. I should have left. But I thought maybe I was seeing an issue where there wasn’t.

I know, that was too optimistic of me.🤦🏾‍♀️

A few weeks later, I shared a photo of myself wearing my AS warrior top. A few people asked where I got it. Given the group is ALLEGEDLY all about spreading awareness, I cheerfully shared the number and name of the person who did the printing.

Chairman Mao responded with a, “Do not use this group for advertising.”

That time, I DID leave. It was her tone, like I’m some naughty child. And it was the fact that they had been going on about spreading awareness and this was a tool for awareness

So, back to the Facebook group. A non communist like me joined the group yesterday. She said she’s on treatment but is struggling with terrible pain at night in specific joints and was asking what to do.

Nobody had answered yet when I saw her her question and responded to it. I told her that despite my being on Trepiline which supposedly also aids you with sleep, my sleep is extremely disturbed by pain so I can relate. I mentioned that I’m waiting to start biologics and asked what treatment she’s on. I ended with sympathy for her struggles.

I never received a response notification so I went back in to see why. She’d sounded pretty desperate after all. And I’d wanted to tell her that the med she’s on takes a while to start having an impact, or to tell her to ask her rheumatologist if there’s another option she can try. I just needed to know so we can hope it would yet take effect, or ask her rheumy for further help. It’s been quite a few months since diagnosis.

I realised why I hadn’t received a response to my comment. Chairman Mao had erased my response.

And she’d written that we must not discuss medication.

Do not discuss medication in a group talking about a disease? Excuse me?

And what??

I posted screenshots of where communists like her had spoken about medication, naming steroid injections, talking about Salazopyrin dosages etc.

My goodness, she’d made her communism so apparent.

And so, I left. I didn’t even wait to see what communist nonsense she’d spew to defend herself. I left.

And yes, by ‘her communism’ I mean her racism. I don’t see any other reason why I’d be ignored by a bunch of non Black people, while non Black people with the same problem get lots of support. Nor do I see why she’d only rap a Black person on the knuckles for something White people had been doing all along with no reprimanding.

And why not just issue her command without erasing my sympathetic comment? Was she wishing she could erase the new member and I too? That was the height of arrogance and rudeness. And lack of respect.

I remember sharing some thoughts from the group and my Black friend asking if it’s rare for Black people to have AS because not a single Black person had said anything.

Maybe Chairman Mao made the group so uncomfortable that many left. I’ll never know.

So here I am. All alone. Dealing with a rare disease and no support group.

Better that than to be belittled by some small woman with a large ego.

And I hope they do take my name off their register as I requested, they don’t represent me after all. If they did, one of them would have spoken up.

But they were all silent.

They are all complicit.

Silence is painful. I hope I speak up for anyone I come across who is being blatantly unfairly treated. I hope I never participate in the erasure of someone, but show them that I see them. I hear them. They matter.