I know many autistic adults have a problem with how parents portray their lives as parents to autistic children. Truth is, that is their lived experience no matter how angry it may make us. It’s their reality and everyone is entitled to speak truth. In that vein, I share this Nigerian video done for Autism Awareness month a few years ago.
This video is my reality, especially for my youngest who doesn’t speak to communicate. (Well, minus the dad’s reactions to the doctor presumably saying there’s no ‘cure.’) I was not ready! This video is for my youngest who I also promise to speak for when she needs my voice. For my youngest, who inspires me to bend my back on her behalf so I can meet her where she is instead of making her conform to where society says she should be.
Hugs…Not really. Not always. But this? Yes always. My hair is her happy place. And so I bend my body to give her a bit of comfort and love. She rests on me, leans into me, and relaxes.
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.
Well, dear reader, the blasted needle- I was right-is out. I got to Intercare Day Hospital nice and early at 6:30am, wondering if I’d stay there for hours starving and dehydrated only for the surgery itself to happen at 1pm or some very late hour like that.
The admitting nurse was a lovely talkative Xhosa lady. She took my BP and went to get the folder to ask the usual, “Do you have diabetes? Do you have any dental implants?” questions. She noticed my age and exclaimed, “What?? But your face doesn’t match your age! You look so young!” When you’ve been told all your life that you’re not great looking, having someone tell you you at least don’t look haggard and sad, and tells you your fingers are dainty and tiny, feels cool. * insert shy laugh*
She read the consent form and asked, “Foreign body removal, screening and gastroscopy?” What happened? Did you have an accident and something went into your body?
I explained that I had surgery, and a surgeon left a needle inside me! She was shocked! She said she would love to see me after surgery because this was new to her! And unimaginable. I told her she was definitely free to come again, and as I planned to ask for the needle, she would see it with her own eyes!
I didn’t wait too long. But it was long enough to feel very cold. One thin covering and blanket is not enough for our cold winter. I’d taken my electric hot water bottle with me and it started getting cold. After an hour and a half of waiting, I plugged it into the wall, started charging my phone and took a walk to the toilet.
I returned and found two nurses waiting for me. “Are you Tha—-?” You know me, I immediately then felt apologetic! (As if I’d been told what time they’d come!) I rushed to unplug everything and take my slippers and leggings back off again, climbed onto the bed…And was wheeled to the waiting area.
No hot water bottle. No heat. No glasses. Radio too soft for me to hear the news. I was blind, cold and miserable. When the nurse was done confirming I was the correct patient, she wished me well as she left. That’s when it hit. Surgery is risky. I knew it, I tried to ignore the thought. But when a nurse says it so seriously, it reminds you how fragile life is. Back in the day, the surgeons used to tell me all the things that can go wrong, “And of course, there is the small chance that you could sue, though I’ve never lost a patient,” they’d end. Nowadays, they don’t, so you block off the risks of infection, bleeding..death…It also became more real when I saw them wheel a huge X ray machine in. “They’re going to use that to find the needle…”
Then, it was time! Radiologist first came to talk to me and find out if I had any implants, then it was show time. The surgeon never actually talked to me. He was on a computer the whole time. It was the anesthetist who told me what she was doing, what she was about to do. When she told me I was going to become drowsy, I asked her to please ask the surgeon to keep the needle for me.
And she did.
I woke up properly in the ward to two shocked nurses. Two lovely Coloured nurses this time. “I had to come and see this! I didn’t believe it when I first heard that you said you had a needle inside you! I have never seen such a thing!”
The other agreed, “What was the assistant doing? And if there was no assistant, why didn’t the theatre nurse count? We always count everything and make sure it’s all out! And even if the patient has been sewn up, we have reopened when we saw we had left a swab in them. But a needle!!?? How did they leave a NEEDLE inside you? They could have killed you! You must sue!”
They could have killed me.
Life is so precious! The surgeon came later, told me he hoped the pain from the needle would now be gone. He said that I should be pain-free in two weeks and if not, to let him know. I hope there is no reason to!
As for the gastroenterologist who told me that chronic gastritis doesn’t exist!🙄My gastroscopy found antral gastritis. Given I’ve had gastritis (diagnosed) since 2015, I’d say that’s quite CHRONIC, wouldn’t you? For that, I must keep taking the PPI I’m on already. Yeah, it obviously hasn’t cured me, just like the heavy dose I was on in 2021 didn’t.
And so, after hearing how wonderful the food is, how yummy the sandwiches are from the nurses and anesthetist, I couldn’t eat any. They didn’t have gluten-free anything. By 13:30pm, I was waiting and dressed again.
And here I am. Home and in extreme pain. No, not where they operated, but my throat.
And so, life continues. I had to shift the last assessment my son was to have, and the feedback session for him and his sister that the psychologist had booked.
Let’s see what the future holds!
I emailed my 2001 surgeon today to find out about that TB appendix thing for the rheumatologist. I don’t know what the antral gastritis will mean for treatment. At least it’s not my entire stomach, just the lower portion, but there’s still gastritis, which she didn’t want. We shall see!
The week I found out, I phoned around, looking for surgeons. They were all too, too booked up. (Well, the ones I tried anyway!) I finally found one where the office manager asked if I was a new patient, asked if I wanted a general consult or… I told her I had what I’m pretty sure is a needle inside me and I definitely would be having a pre-surgical consult as I want it out!
She made up an appointment for that same week, telling me that if I need surgery indeed, the doctor could do it the very day after the consult. Which would be Friday.
Instead, Friday, I found myself have a CT scan. The doctor had told me to go book the scan then he’d call to discuss the nitty gritty of surgery. He said everything would move fast after the CT scan.
His definition of fast is not my definition. I waited all of Friday, Saturday, Sunday and only got the call on Monday. We did discuss that he would send me to radiology first for them to mark where the foreign body is, then I’d go down to theater . But first, I’d need to phone the office and book a consultation.
My face fell… Well, I couldn’t see it but I felt like it fell.😩What? Another consultation?? But the first consultation I paid for was already clear that I would be having surgery! He knew what we had to deal with! I asked why I’d be going in for another consultation. He said it was to sign paperwork. In the past five years, I have NEVER gone and paid for a consultation just to sign paperwork. In most cases, I received it via email and sent it back.
So, I phoned the office that same day-Monday morning. Again, same question. “Are you a new patient?” I explained that I felt new as I hadn’t had my surgery yet, but that I HAD been seen once the previous week. She discussed that seeing as I was going in to sign paperwork, I wasn’t new, and that the closest available appointment would be the following week.
Excuse me? You’re telling me you suddenly can’t rustle up an appointment this same week like you did when you heard I was new, a very quick appointment just for me to sign some paperwork? You’re telling me I have to wait a whole week just to SIGN?? What happened to “You could even have surgery the day after you see him?” And if you’re making me wait this long just to sign some papers, how long till the actual surgery?
Those were all in my mind as I queried how long the wait was going to be. She sounded irritated as she mentioned that there was no space that week.
Unfortunately, I don’t get angry, I get hurt. Instead of reminding her that she lured me to the practice by telling me I’d be operated on ASAP and instead I didn’t even have a date yet, I just set up the appointment for this coming Monday, wondering silently when exactly surgery itself would be.
By Wednesday, I was now angry. This wasn’t right, nor safe. With other surgeons, they tell me a date the very first consult. I didn’t have that. And I felt she said what she said about a quick surgery knowing full well they want you to pay for two consultations but that once I’ve seen the doctor once, I’d feel trapped. Now, a week had passed since I had first started looking for surgeons. A week in which I might have found a non-deceptive practice.
It was now a matter of principle. You don’t make empty promises, milk money out of me and get away scot-free. I phoned any and every surgeon. One was listed as being at a hospital called Mediclinic Milnerton. Lies! It went straight to his home landline and he retired seven years ago! I felt so bad, bothering Dr Louw like that. But he was so kind and tried so hard to help. But the doctor he suggested was not available till 9 June. So, I asked for recommendations for “not too busy” surgeons in a neighbourhood group and phoned the first name that someone shared.
He had space that very same week, so I went in to see him yesterday morning. And it’s not that he wasn’t busy because there were many of us there. They created space.Also he didn’t treat me like I’m on some conveyor belt like the other surgeon had. He introduced himself nicely, looked me in the eye as we spoke and I felt at ease.
Better yet, I signed paperwork that very same appointment and I’m having surgery this Wednesday. THAT’s what I’m taking about!
Not only that, he will also carry out the gastroscopy the rheumatologist had requested I have done. We need to see if my Exinef (NSAID for the AS) is killing me, and we need to see if there are biologics I won’t be able to try.
Just a few more days. Just a few more days and this thing will be out of me. He can’t promise that it will be super smooth or quick, because we don’t know what damage the needle has done in there, but at least we will be working on it.
And that, dear reader, is where we are.
I STILL HAVE A FOREIGN BODY WITHIN ME. But Dr Charl Cooper will get rid of it soon.
As in, each time it’s mentioned, it’s not a story to me, it’s reality. From the leafy suburbs where I went to my White school, to the townships guarded by police officers on huge tanks as you ‘enter.’
I tried to join some neighbourhood WhatsApp groups where I live. It’s a previously White suburb. I left. They hanker after the good old days and for me, there is no such thing. They get angry about things that only Black people do. Like, selling vegetables on the pavement without a license. We don’t have that concept! We just have “trying to provide for my family” traditions. They get angry that the people didn’t apply for this and that compliance certificate..They get disgusted because one guy who was selling was picking his nose.🤣🤣They have time for loads of petty complaints. But all I see is, “Those Black peoples who don’t have the capital to buy or resent stores are an eyesore on our pavements.” (Sidewalks)
And there’s actually order. They group themselves in specific areas. It’s like an unplanned marketplace. And no, when I drive past I never feel like “they’re a danger.”🙄
So, that will be the background or context to this rant that I put up on my other social media place. First, I’ll post photos of Gugulethu. That’s the township I grew up in. Home size, home type, and area not of our choosing. Forced there by the apartheid government. Then below the rant, I’ll put photos of the homes in Simon’s Town. I’m sure you’ll understand the heartache and sadness of my childhood experiences.
I’m leaving the descriptions in the adverts on purpose. The difference between Gugulethu and there, is stark and sad.
My goodness!
I am angry and heartbroken in equal measure!
Periodically, we see updates on our Black and Coloured people getting keys or money for land in areas they were forcibly removed from.
This hits hard. Those triggers that the woke talk about?
Takes me back to junior school when I moved from Mickelfield Girls (Independent school. Rebel that took this Black girl when other private schools kept to the law) to Rustenburg Girls (ex-government school), where I felt the difference.
No, the WHITE GIRLS IN MY CLASS MADE ME FEEL THE DIFFERENCE.
During history, “Do you know Zooloo?” (Lessons on king Shaka)
“Do you live in a hut?”
And randomly, they’d ask, “Do you have a house? Do you live a shack? Is it stinky?”
One girl said that her father said “Gugulethu is an eyesore.”
This morning’s news about the Gugulethu people receiving keys after being moved from Simon’s Town hit hard. I had no idea Black people used to live there. It’s such a “White” area!
They took us from beauty and dumped us in squalor.
They took us from the coast, from the mountainside and shoved us where there was nothing to see, none of God’s beauty.
Then the racists have the audacity to long for “the good old days” in the white neighborhoods of theirs!?
Which good old days?
The ones BEFORE they invaded our land, took us from our property and colonized OUR neighbourhoods while forcing us to live where they then mocked us for living??
Or the more recent ‘good old days’ when they smugly lived on stolen land and only saw us when they needed our broken bodies to wash their stolen toilets and weed the grass that was ours?
I’ve never rejoined any neighbourhood WhatsApp group. People don’t think before they type. And my own life is painful enough without reading their dark thoughts.
Sometimes I think my life is just too much… There were times when introducing myself, that newbies would exclaim, “All this for one person?? You’re a Job!” And I’d brush it off. Now, now I agree. It’s like (minor) calamity after calamity.
There’s a whole needle in my body-as far as we can tell! A whole suturing needle in my body, hanging around, waiting to torture me!
And it’s been there for a long time. As in, maybe a year now. People have seen it. And they’ve kept quiet.
What in the world!???
In April, I had an MRI. Don’t ask me about the January MRI because surely they must have seen something in me? I can’t access the images and report so I don’t know. But let’s go back to April. I lay on the bed and the radiologist started scanning. Then she stopped and asked if I have metal in my underwear as metal was showing up on her screen. None of my panties have metal, but I told her she could come check the one I was wearing for herself… So she did. And yep, no metal in my undies.
And that was it. That’s all. It ended there.
Then, two weeks ago, the rheumatologist suggested I have Ferguson view X-rays done of my SI joints as X-rays might show more than the MRI have. I went in. Again, the radiologist-different hospital, different lady-asked if I had metal in my underwear as the screen was picking metal up. I told her about the April question and asked HER where exactly the metal was showing up, and what it looked like.
She said it was in my uterus, and curved.
I won’t lie. A suturing needle did not cross my mind at all. NO MISTAKE crossed my mind. I thought it was a semi shut c-shaped surgical clip that they were picking up. I wondered with a friend, why the gynae hadn’t told me he was going to leave a metal clip in me.
Again, we forgot about it till I received my report and images this past weekend
I looked at the shape and thought, “Wow! This thing is bigger than I thought!” Then I thought, “Hey wait a minute! This looks like a suturing needle! No…It can’t be, can it!??”
Conscious that I didn’t want to put ideas in her head, I asked my surgical nurse cousin what she thought it looked like.
She immediately came back with, “It looks like a suturing needle,” along with some photos of real suturing needles.
I wish I could make your heart drop as mine did.
A needle!? In me? Who did it? What will happen? Who will fix it? What damage has it done?
Tomorrow, I see a surgeon I’ve never met before to discuss removing the needle. I went to hospital Trauma unit first, and they said whoever removes it will need an X-ray machine to find the needle as s/he enters.
They also said I should go back if I start vomiting blood.
I am officially freaked out. I’m nervous. I used to rub this thing, thinking it was my own body being weird, trying to massage the pain away. Do you know how how disconcerting it is to realise I was massaging a needle?? (Or so we all suppose.)
“But what if they turn you against you when they grow up?” A question apparently asked of not a few adoptive parents when they mention that they will adopt. “But what if you invest all your money on this stranger and then they repay you by moving on and forgetting you later, forgetting to be grateful for what you’ve done and forgetting that they owe you?” Is what they are asking.
I have always hated that concept. The concepts-plural. Firstly, gratitude. That our adoptees owe us a whole lot of gratitude that our biological children apparently don’t is plain weird to me. I don’t get it. We give both sets of children life. The bio kid wouldn’t be alive without us. Without our feeding and changing them as helpless newborns, without our getting them treatment when sick, they’d die. So why don’t we ask pregnant women if they’re sure they want to have children given the children might respond to them like Absalom did, with murder in their hearts?
Our adoptees receive a life from us. Hopefully a life of love, compassion, nurturing, education, care, respect…Hmm, nothing different to what we give our biological children! So why should only one type of child owe us anything?
Secondly, the concept of leaving us, or of forsaking us. I don’t adopt so I can keep someone under me. I don’t adopt so later in life they take care of me, or love me… It’s not about what I’ll gain! It’s about being something that someone needs. It’s not an investment that I want a return on! It’s a living human being who deserves love.
If these naysayers died and left behind their biological children, would they expect the guardians to expect to be repaid for raising them? Would they be thinking, “I hope Susie always sticks to Mandy and Jim no matter what. I hope she remembers that she owes them her loyalty for doing what any decent human should do.”
Absalom turned against his own biological father. The ultimate act of rebellion and ingratitude-desiring to murder your father. I’ve seen quite a few articles of family murders. Most have been performed by biologically related children.
Yet nobody has ever responded with, “See!? They shouldn’t have had sex and conceived. Now their child turned against them after everything they did for him.”
If they ‘turn against’ me, I’ll do what I do now. What I did before I met them…
Love them.
I didn’t adopt so I could have a loyal puppy. I adopted so my children could experience family. I’ll have succeeded. I’ll have succeeded if they grow up with a mom they have the luxury of “turning against.” And that’s all that matters to me.
One of the people who has been very hateful about my children once had her lastborn son hold her by the neck, trying to throttle her. She called the police. She also once had her only daughter tell her she looks forward to “pissing on” her “grave” when she’s dead. Hmm, the fact that her bio kids would act the way they have, means that if any adoptee left HER, they’d be justified. And so it is with some adoptees who DO turn against their parents. They weren’t even trying to be what the children deserve. And sometimes, they were being hurtful on purpose.
More power to those who don’t stay merely for the sake of the debt they feel they owe. Do what is right for you, Adult Adoptee. You don’t owe your adoptive parents anything more than what biological children owe. If we adopted to do you a favour, expecting your undying loyalty not because of love but because of DUTY, then we have failed you.
The homeschool furore has nothing and EVERYTHING to do with race. The powers that be are Black. They say that homeschool parents are keeping their children out of schools so they don’t have to mix with Black children. Their response has been to come up with a new Education Bill. One of the proposals is to put home educating parents in jail if they don’t register with the education department. IF they approve your homeschool registration, they want to oversee what you do. They want you to have a schedule with school times that have to be of a certain length each day, they want you to keep your child’s school records for three years, they want to assess if THEY believe your home is ‘suitable’ And they want YOU to hire an external assessor to come every year and test your child. And of course, your curriculum must be according to their standards.
Nope! Must homeschooling parents didn’t register their children even before prison was mentioned. Some parents who have registered have had no response for up to two years. Some have had officials drop in without warning. One was told she couldn’t use the dining room table because the light wasn’t directly above it. Of course, some have had things run smoothly, and others don’t care that strangers pop in randomly. But the rest of us do mind.
My children have never used the South African curriculum. They’ve never been assessed by anyone external and yet here my teens are, with an A average (so far) for their official Cambridge exams. There’s no NEED for someone to assess the children. The parent knows full well what strengths and weaknesses they have!
On the opposite end of the spectrum, are my special two. They have significant barriers to learning. My entire formal school day for them is 30 minutes long. They can’t handle the length of time the government would want them to have. They’ve incidentally begun the academic portion of their assessments -today is the final hour- and the psychologist told me that even that hour with different activities was too long for my daughter, she got “tired.” That’s exactly what I’ve heard from other therapists too. If an hour of varied activities is too long and wears my girl out, what kind of torture would I be putting my child through by making her sit and write for many hours a day?
My son apparently found some of the activities “terrifying” so she had to stop and just play with him. Impossible to do under the government guidelines. She said he was very hard on himself, scared he would fail even though she assured him that he wasn’t being ‘tested. ‘ (My teens are writing exams. Maybe that is where he’s getting the idea that exams or tests are pas or fail and that failing would be terrible. My children carastrophise a lot.😅)
The whole point of home education is flexibility-meeting the child where they are and tailoring their education to suit THEIR needs, not government standards. It’s not like the government will pay for therapy when our children are burnt out from too much pressure.
Also, this would mean that I’m paying someone to come tell me what I know. “My children can’t handle mainstream education.” That’s a huge waste of money! And imagine how stressed they’d be having some stranger doing typical exams with them.
Nope.
Might as well cuff me how. My children’s hearts and minds matter more than government pettiness. And yes, not a few homeschooling parents ARE racist. Most of them ARE White. But they aren’t the only homeschool families in South Africa.
I’ll have to face jail time before I change my flexible, child-friendly homeschooling programs to “doing school..at home.”
I need to give the office manager of Dr Greg Paulson a shout out! Since Friday, I’ve had a red eye, and I was paranoid. Just last week the rheumy had asked if I had any eye issues and I hadn’t…Till Friday afternoon!
Google told me that “left untreated,” uveitis could leave me blind. Except, what if it wasn’t uveitis? So I waited. I knew uveitis would feel awful quickly, but I also have a high pain threshold, so I wasn’t sure if I was just tolerating the extreme pain better.
Sunday, I tried to find emergency opthalmologists on our med aid network but there aren’t any. I debated going to Trauma, but when I’ve taken my twins for eye issues, they’ve just used a normal torch and I knew you need to test pressure too. So I didn’t go.
This morning, I started looking for available opthalmologist. Wouldn’t you know it, like too many specialists, the ones I got through to were only available in June. I’d be blind by THEN! And this is where Dr G Paulson’s right hand lady comes in. She phoned me back with MANY other options and told me to go to Trauma at our closest hospital and who her opthalmologist that’s there, would check on me. She gave me alternate numbers… She was amazing!
One of her suggestions was a Dr Mouton. I was told that he was fully booked, but that she would take my details down. “You have anky what?” Needless to say, when the opthalmologist heard, he wanted to see me asap.
And so I went!
He is a breath of fresh air too! So personable and kind. I told him how guilty I felt taking up time without an appointment. He reassured me that it was urgent and that it wouldn’t take too long. Thankfully, two patients decided not to pitch so we both rejoiced! Now I didn’t need to feel bad for making some poor people wait and wait and wonder why they were waiting so long!
Scleritis. Similar to uveitis in terms of possible blindness but not as extreme with regards to pain and where the inflammation occurs. And like uveitis many of us autoimmune disease people get it. I must continue with my anti inflammatory tablets from the rheumy, and do seven days of steroid eye drops. And take it from there! We had a discussion-started by him-on wonderful African kings and leaders. And he had quite a few patients of colour. He is a gem. I highly recommend him.
And from now on if I have a long wait, though I will definitely be in pain, and would appreciate it if they phoned to alert us about being behind like my children’s paediatrician does, I’ll tell myself the delay is because some very desperate soul had an emergency and had to be fitted in.
My eyes (and bath) are sore, tired and I have a headache. My typos will therefore be even more evident in this post as I won’t be editing it.
I’m scared. I have a swollen wrist and arm about 6cm higher up my wrist. My neck hurt when I reached up to being washing down, gave an audible crack. It’s not turning properly when I’m reversing out the garage. It’s as if my AS is speeding up and spreading more. I don’t like it. Though I began and spent many years on a vegan anti inflammatory diet and the AS didn’t exactly hide like it does for some (before I realised it was triggering IBS flare ups) I might try it again. But I will need some protein that isn’t legumes. What to do. I know where God stands. And I’ll be honest, I tried it. I can’t. I tried anti inflammatory diet with white meat protein and it’s too gross now. I’ve spent too many years not eating anything that moved that the texture, the concept… I don’t know. I need protein. And I can’t have legumes. Husband agreed that someone in my situation needed fish or chicken-free range-but I can’t. I tried and threw it out. The smell, texture and taste are gross for me. I even tried free range eggs and I couldn’t handle those either! 20 years of none of that had changed my tastebuds and tastes. But I’m struggling. I really am. I need to try halt this speeding train. Maybe this time it will help. Or, it will at least reduce the burden, reduce the amount of pain I’m in. I will see.
(I’m on a plant based diet because that’s what Adam and Eve were on and God wants me cholesterol-free and as healthy as possible. Except now I am not sure the wants me to do it and die faster.)
What I noticed yesterday when I shared my wonderful appointment with my new rheumatologist, is that only two people understood that it was good, but not everything I need. The other few tended to act as if we’d found a cure and everything will now be hunkydory.
Not at all.
There is no light at the end of my AS tunnel because there’s no end. There’s no cure. Treatments themselves are trial and error. Already, even before we even TRY to apply for me to get the meds -we’re already in agreement that I’ll need to get a loan- there’s one biologic that won’t be a possibility unless the TB my surgeon said he found inside my appendix, was not really TB but looked like it. Don’t ask me if he still has files from 2001!
But. I still had a great appointment with my new rheumy yesterday! Woohoo!
She was dismayed about the gastroenterologist. Of course chronic gastritis exists! Also, she didn’t understand why he refused to scope me anyway. According to her, if a patient asks for testing, they should provide it, even without a preexisting condition. So, she’s a winner there! She will organise a gastroscopy and colonoscopy with a different gastroenterologist.
She was also shocked by the dermatologist who told me my weird skin issues were a birthmark. I had not been born with them! She thinks they might be psoriasis. She said that once we move onto the (expensive) biologics, if they improve, then we will know for sure. In the meantime, she’s given me a six month script of anti-inflammatory ointment to put on it.
She spoke to me like an equal. Actually, she really cares about us, it’s like we patients are her children. She spoke about side effects, and agreed 100% with why I saw the gastroenterologist! She’s given me the mother of all stomach acid meds, and a daily anti inflammatory for now. But we definitely will need to move onto biologics. I’ll see her three months unless the anti inflammatory affects me, or the scope shows damage
The biggie! She confirmed my research (seeing my old rheumy doesn’t speak!) that all my health conditions are linked to AS. No, that’s not the biggie!
The biggie is that she went back to the very first MRI I had when I first went to the doctors telling them I was in extreme and increasing pain and needed help. This was in 2011. They told me there was nothing wrong and that the pain is because my core muscles are weak so I should see a biokineticist or physiotherapist.
She showed me the MRI. People, I wanted to cry. It was extremely emotional. I, with my untrained eye could see the damage that had occurred in my right SI joint. It was very clear, and so was the inflammation! How could they miss it?? The radiologist AND the doctor saw no thing -apparently! I could see it! My heart shattered into little pieces. All this time when I was crying over the years spent seeking answers, I had thought the MRI just wasn’t showing it at the time.
But it was.
The professionals who blamed ME for my suffering… The physiotherapist who only saw me twice and didn’t touch me, who made me feel like dog poop, dirty, disgusting. For nothing. It wasn’t my core Andy way, so I wasted time and money for nothing.
The nicer physiotherapist who told me my pain was because I wasn’t sashaying enough and needed to move my hips more. All that and more…Like the chiropractor who told me it’s because I carry a child on my hip. (Without asking if I even did.)
It was there in 2011. And as we looked at the January 2023 MRI that finally got me the diagnosis, we could clearly see how the passage of time has made things worse. The bone was jagged and misshaped, now it has been eroded too.
She also agreed with me that I need SI joint injections. Which the neurosurgeon said I didn’t! She cautioned that if any relief occurs, it might only be for a week, but it’s worth it. I can’t imagine a week of no pain in that hip.
She has also ordered specialized hip X-rays which I will have done before the ultrasound guided SI joint injections tomorrow.
We are on the right track! Not only did she agree that it was more than ok to stop the other meds I stopped, but she even spoke not only about my potential meds, but others’ too for other types of arthritis. was super talkative, very passionate, and gets that the pain is horrendous. She was even shocked that I had been exercising as I was!
I am extremely grateful I switched to her. If anyone in CT ever needs recommendations for rheumatologists, let me know! There are White patients who have yelled at doctors, saying they that they didn’t want a doctor of colour treating them, touching them, so be ‘warned’ that she’s Indian with a bindi on her forehead. She’s a rockstar!
Back to the fact that I’m in a tunnel that has no end. She emailed information through on AS. It included exercises to try slow the back from fusing into a hunchback. Breathing exercises to expand my rib cage to try prevent or show down the way it tends to not expand and causes breathing inabilities… And this is with treatment. There is no cure. It is progressive. All we are doing is reducing suffering and inflammation. And hopefully going to slow the disease down.
But, she is the light in the tunnel, and I’m grateful.
They said I should write a book 