Author: Grace by any other name

God-lover

Why ‘Chronically Yours?‘

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I know no other life. My first childhood memory is of pain after an operation. I was diagnosed with Crohn’s disease when I was seven years old and with Juvenile Rheumatoid Arthritis when I was 16 years old. Also, I’ve had chronic iron deficiency anemia ever since I could remember, and asthma also plagued my life as a child and now as an adult. (I have iron infusions every now and then.)

Later, irritable bowel syndrome was added to the list. A diagnosis that took years. And even after being diagnosed, the ‘treatment’ recommended to me was the worst. Eat more wheat. Meanwhile, gluten is actually my biggest enemy. I even ended up in a British ER because of the abdominal pain. (My IBS is the constipation type and I was too busy being young and awesome to realise I was constipated till I had exploratory laparoscopic surgery and the surgeon told me, “You’re full of s—t” with a big smile. (At first I thought he was telling me I was malingering till he added, “Literally. You have spastic colon.”

Fast forward and pass some other operations, and I am then diagnosed with chronic gastritis in 2021. See a pattern here? How could I NOT call this blog ‘chronically something or the other?’

And now here we are. Ankylosing spondylitis. Something I’d never heard of till it shouted loudly in my ear, “I’M HERE!”

Someone complained that they hadn’t slept well that particular week and I wanted to snort. I haven’t slept well in decades! Arthritis and IBS are painful! Add inflammation of my stomach lining and you have someone who doesn’t know what it’s like to sleep well for a month straight.

So, that’s who I am. A chronically suffering mother and friend. And chronically Christian too. I love Him with all my heart and not a day goes by when I don’t have a chat with Him on top of my usual prayers. I’m the crazy one who used to have conversations with her angel while walking to campus as a student. I believe in God and I believe in the existence of good and bad angels.

Welcome to my life.

You’re Not a Biological Child

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I’ll never forget hearing those words. Sent in a voice note to a younger female in law, they were full of venom and evil intent. I knew in that moment that the vile person who said this stupid sentence would never accept MY ‘not biological’ children. I knew she hadn’t exactly welcomed them- after all, she’d said the name we chose was that of the child of a pedophile. “Umm, ok..? Why would your mind even go there?”

Also, if she’s “not a biological child” then what is she? What kind of a child is she? Sperm and egg fertilization are biological processes. Yeah, dummies say dumb things.

I wanted to adopt from childhood. Then met a man who ONLY wanted to adopt. I truly felt it was a match made in heaven! (Once we got past my asking what kind of a Black man doesn’t want children with his seed?🤣) M y wanting to experience pregnancy was purely that. A desire to experience pregnancy. I could have willingly given birth to an adopted child. I didn’t want a bio child and an adoptee, I wanted to be pregnant, and to become a mother.

The first thing my own mother said when we took our first adoptee to meet them for the first time was, “Where is her home? Where is her mother?” I should have known. But I thought she was just fumbling with wording. I knew what she meant, but I responded, “Her home is with us. I am her mom!” Duh!

The pedophile, “You’re not a biological child” person told me we shouldn’t have adopted, as now I’d not go into the workforce. I told her I had yet many more years educating my other children in our homeschool so paid employment wasn’t on the radar anyway.

Then she wonders why my husband didn’t tell her about our second adoption, complaining that she found out through social media like everyone else.

I read a book by an adoptee recently. Sadly, her maternal (adoptive) grandmother made it very clear to her that only her biological grandchildren mattered. And her mother in law who knew she was adopted, told her and her husband not to adopt but to have biological children first. OUCH!

The last few words in that chapter were something like this, “Not biological. Second place.” And that is something I never want my children to feel if I can help it. I have shut out both my mother and the voice note relative. My innocent children come first.

A friend of mine is single and in her 30s and has made it clear to suitors that she will adopt.

They’ve all refused to love a child coming to their family in that manner.

So, single she remains. My heroine!

I don’t know what this obsession is with blood. Or really, sperm and egg. Why people can’t love all children.

At church once as we led a discussion on adoption, a young man sincerely asked my husband, “But how do you do it? How do you love a child that’s not yours?”

His answer was, “Because they are all GOD’s children. Whether they came from my loins or another man’s, none of them are MINE. They’ve been lent to us by God to raise for Him. So, if I can love God’s child from my loins, I can love God’s child from anywhere.”

Side note. The possessive nature too many adoptive parents have is also weird. They go to extremes as if the child is an object. They express dislike towards the birth parents. Even some guy who wrote a self congratulatory book about his adopting children stated that he felt (for a time) that updating the child’s birth mom made him feel like he was reporting to the real parent and he was just a guardian. He felt as if she was judging him and that he shouldn’t have had to tell anyone how HIS child was doing.

I don’t get that. If I love my child, I want them to be loved by everyone! The more, the merrier. I want the birth parents to love the child so much that they will put self aside for our child’s sake. I want them to fall in love with this little human and be willing to sacrifice for them. I WANT them to watch our children grow. It doesn’t feel like I’m reporting to a higher authority, it has always felt like I’m sharing something special and sacred with someone who will also feel the same sense of sacredness. With someone who is hurting and needs the pain to be reduced. Not someone who is in competition with me, like this dad felt.

I need my children’s birth parents to stick around. To be engaged. I want them to stay engaged so that if my children ever have questions I can’t answer that only they can, my children get the answers. The closer, the easier it is for that to happen.

Sadly, the one birth mom who was close and engaged has disappeared. Well, her other daughter who she is living with now has my number should anything bad happen to her. But she has disengaged. The other one- we never did find her.

I wish I could share my children with these women.

Back to the point. I am very ‘judgmental’ when it comes to this. If you can’t love a child sincerely just because of whose belly they came from, I can’t respect you. I just can’t. If you will rant at someone who was abandoned by their mother and tell them they are “not part of the family,” that they “are not a biological child,” I will wish upon you every bit of judgment that God can heap on you. You’ve crossed a line. And I will only allow you back in my life when you change that evil heart and allow love and light into it.

I extend my deepest ‘sympathies’ to every adoptee or step child who has ever been made to feel second rate. You are enough. I just wish those who AREN’T enough didn’t spew their poison over and into you.

Those people are NOT part of MY family.

Where Are Your Hormones?

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I saw the GP this week for a new asthma pump. I mentioned that I’m on HRT for my stupidly early (peri) menopause. “What!?? Where are your hormones!?” he exclaimed.

Yeah, I feel like that too, man!

How did I know even before going to the gynae? Hot flashes that left me drenched in sweat-day and night. So bad that my children would ask me why I’m sweating all of a sudden. Lack of libido. A period that had disappeared since October last year. Terribly brain fog and poor memory. The tests were just a confirmation.

My poor children. Their mother is 42 and apparently looks 22 but her body is acting like it’s 52! And on bad days like today, 82! The pain is not under control and I hope the new rheumatologist has a better but not bank-robbing plan. From what I’ve seen, you have to be swimming in money to afford Ankylosing spondylitis treatment, and I’m not. We already had my poor husband wondering where he’d apply for a loan for my meds.

I’d rather ONLY deal with early menopause.

Dinosaur Rheumatologists

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When I was a teenager, my knees, fingers, toes and feet started being extremely sore and swollen. I wouldn’t be able to hold my pens at school and my friend said I was walking “like a granny.” I was told-after numerous tests-that I had Juvenile Rheumatoid Arthritis. For years, I accepted that. All they did was give me an anti inflammatory gel to rub on my joints. I was resigned to the pain and stiffness. I wasn’t able to curl my hands to hold a cup, the iron… I couldn’t bend my fingers to write.

But for the past two years, that has not happened in the same way, or to the same extent as it used to.

On the other hand, my lower back pain increased dramatically. It was in my early 20’s that I noticed that I wasn’t as ‘well’ as others my age and younger. I worked in a warehouse and my feet, legs and sacral area were sore while others were still strong. I quit that job and found a caregiving job. That too strained my back but I didn’t pay much attention to it till 2011.

I remember the day vividly. I was sitting on a stationary bike and this awful pain shot through what I thought was my coccyx. And it didn’t let up. I’ve had X-rays, MRIs and all I’ve been told is that it’s mechanical, it’s because my hips aren’t swaying enough when I’m walking, and because I put my daughter on my hip. I’ve seen doctors, chiropractors and physiotherapists. No can do. I stopped looking for answers.

Till last year. I was waking up in excruciating pain, begging God to kill me. And so, one last time, I tried to figure out why I was in so much pain. I went to a pain clinic and the GP there sent me for a bone scan. And there it was. Multiple sites of arthritis. She told me I had osteoarthritis, “ordinary wear and tear” and suggested I get facet block injections into my spine and SI joint. After that, a rhizotomy. (Basically killing the nerve so doesn’t feel pain.)

But there was also enthesopathy (inflammation where the ligaments or tendons join my bone) in my lower limbs. What about that? And if the pain and cause were “ordinary,” how come none of my fellow 42 year olds had struggled with intense pain?

I ended up seeing a different doctor. After all, the treatments weren’t guaranteed to get rid of the pain, I didn’t trust the way the enthesopathy (enthesitis) was ignored, and they hadn’t given me a time the day before the procedure was meant to take place in theatre. How was I to get my ‘driver’ ready and available if they didn’t know when they’d need to take me home? Not fair!

Long story short, I ended up seeing a male rheumatologist. He is not my cup of tea! Very uncommunicative. Sent me for blood tests without telling me what he was testing for. He did tell me my mobility was not good! But he gave me a prescription but didn’t tell me what the medication was that he prescribed! I asked him and all he said was, “Painkillers. Don’t worry, there are no anti inflammatories. I know you can’t have those.”

When I got to the pharmacy, it turned out he’s prescribed Omeprazole to protect my messed up stomach lining, Prednisone for three months, and Sulfasalazine for the foreseeable future. I’d never heard of the latter in all my life! And I didn’t know what he was using it for. Four tablets of it per day a day and no explanation! He tests my urine but doesn’t say why either.

I tried two highly rated rheumatologists. One doesn’t even have a date that I can book an appointment for, and the other set me up for next year May!!

An email from the axial Spondyloarthritis association of our country said that we are short of rheumatologists. I can believe that! And most, just like overseas ones, are old. What will we do when the dinosaur rheumatologists retire?

From that first meeting, I also left with a form for an MRI. At my next appointment, he didn’t tell me my results, I had to ask him, though by the time I saw him, I’d already seen the results on my medical aid scheme (health insurance type company) app!

And that is how I was diagnosed with AS.

Woohoo!

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My three year old -soon to be four-is a twin. We suspect they both are autistic but she’s more challenging because her feelings are super strong and she has minimal speech. When she wants something, she will take your hand and lead you to it. If she says “Mommy” know that she won’t say it again till a few months pass. If she says “toes,” there’s no guarantee she will say it again. She is truly what I imagine a minimally speaking autistic is like.

But hey, it’s a step from non-speaking. And if she goes back to no verbal speech whatsoever, I hope she will learn to type or use some other form of AAC to communicate with. I know some adults who just have never been able to communicate in any understandable way. I can’t imagine how frustrating that must be!

This past week, she has been saying, “Some mik” or “Zhoos” when she wants a milk or juice. I always ask, “What do you want?” And then after a brief pause, answering for her. (Last thing I want is to ever make her feel pressured to do something she cannot do, or force her to try do something her brain stops her from doing. Thinking of the adults who said they want to talk but the words become stuck as if behind a wall, and the mouth won’t produce what the brain is thinking.)

But today. Just now… She did it. She took my hand, led me to the fridge. I asked her, “What do you want?”

And for the first time ever, she answered verbally! I am teary just typing it! She said, “Ice lolly!”

I’m so so excited and so, happy!

I know it’s very inconsistent. I know it’s rare. But… It’s possible! And today was the day!

Let’s Try That Again!

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I had many view for someone who had only just begun their blog, and after looking for my blog and finding some unknown (to me) website bearing the same name, it made sense. So, I’m no longer going to use The Daily Moan.

Where was I?

I’m a mother on the dark continent, right at the bottom. I prefer anonymity because of my relatives. They are unloving, adoption-hating fake christians, so the less they know about me, the better. And specifically, the less they know about my health that they don’t care about, and my children’s struggles, the better.

I have a large number of children, many of home are neurodivergent. I hope I wrote that correctly! This will be my space to vent and to share. To celebrate and to rejoice. Hopefully, any other mom who comes this way and has a child or children with my children’s issues will find hope. What I don’t like is causing pain to mothers whose children’s abilities are extremely limited. I know how painful it is when you know that though your child has that same ‘label,’ they won’t have that same success story. For me, whose autistic children also have global developmental delay, the miracle I will celebrate won’t be the same as the one someone like maybe, Greta Thunberg’s mother will celebrate. I hope I never cause pain. I hope this blog is either found by people who have totally different problems but want to know how others cope, or by those whose children are less limited than mine are.

As for myself? I have a few health problems, and ankylosing spondylitis. In the next few posts, I’ll share how I came to that diagnosis.Things here in A—ca are very different to those in the Western world. Or, to be specific, the supports I’ve seen in Britain aren’t at all even close to what we have here. I feel like we’ve been forsaken.

Anyway, I had a bad night-lots of joint pain- and I’m feeling terribly sleepy so I’ll end this post here before I write something totally unintelligible!