Yesterday was awful. I woke up feeling drugged. I was so tired that I wanted to cry. Even my husband was concerned. But, I couldn’t rest.
I guess I know why… My body was working hard to create more chaos. So we have the huge joints, and my shoulders, a knee, my fingers, feet and now this. You know how you’re meant to rest when tired and pregnant as your body is creating a human being?
That’s how I feel. An exhaustion I can’t combat. Fatigue I can’t fight. But chaos around me that I need to try control. Like checking my one twin isn’t pulling anything off my shelf and turning around to see that her twin has taken something I just finished ironing and is playing with it.
Like being so happy that they love the flowers I was given. But having to sort the mess out. I could sleep for hours. Alas, homeschooling parents of little ones who don’t have support can never rest.
Many doctors focus on the pain, but the fatigue is also a hugely detrimental symptom for us. Let’s see if I’ll ever get treatment that will help.
Another edition of “What I wrote on the other forum.”
I was told this week that the AS is progressing. I was MEANT to see my rheumatologist in August and THEN have a discussion about next steps but the office phoned me this week to tell me it’s time to take next steps NOW.
(For the benefit of new ‘friends’ I’ll just say this. When you have found a cure for Ankylosing Spondylitis, talk to me. Otherwise, I’m not here for ‘remedies.’ I’ve spent 20 years living in the natural realm and everything I tried even BEFORE this year’s final diagnosis is the best out there diet and supplement wise.)
I’ve failed both starter meds and we are moving onto the big guns. Thankfully, I’m not scared of needles, because these will be regular injections for the rest of my life-unless I go into remission. I know some who have gone into remission and after being like that for a while-they are allowed to stop treatment.
Yes, it sounds like fighting incurable cancer because it is incurable. Some might go into remission fast, and some go through all the different biologics (the big guns) and still the disease progresses. THAT, is scary.
Long story short…
“Too late for that!” You exclaim.
One of the first (so I’ve seen) biologics that they use for many of us with our different autoimmune diseases is Humira. (She didn’t name them last time. Just mentioned the impact they have.) All biologics tend to reduce your immune system’s ability to fight disease. That’s after all the aim-to stop your BODY FIGHTING against itself so terribly. But some, like Humira, leave you wide open for TB to come wreak havoc inside you.
So, I went off to do a Mantoux test-They inject you with a bit of TB bacteria. (Or something along those lines! Doctors I’ve seen like asking if I’m a medical doctor because of the jargon that apparently rolls of my tongue so easily as if I’m trained -but this one was new to me.) Then a few days later, you go back and they see if you are positive. If your welt is back and raised quite ‘high’ then you have been exposed or have TB (dormant or not) and for my purposes, cannot take Humira unless I take TB tablets for the duration of treatment. NEVER!
So, off I went to do that and also have chest X-rays done.
Bravely wearing my warrior hoodie by Tk Taku Madzandefor that is truly what I am, and I mean it.
If healthy moms can shout at their children, lose their tempers, only a warrior can-according to her children-keep her peace and be “always so nice” despite the constant hum of fatigue and pain that builds to a crescendo by 4pm..or earlier if it’s flare time.
This Sunday, the you Net children came into my room not 5 minutes after I got done with a bit of laundry. One of them had the temerity to put their legs right on my surgical wound. I wanted to laugh. And cry. Ella came in, saw how they were all on top of me and exclaimed, “This is chaos!” And deserted me!
Only a warrior keeps going when the war is going against her instead of turning tail and running away. I’m getting worse, but I haven’t taken ‘disability’ leave. I’m still teaching, still taking kids for assessments and therapy. And many rightfully do go on disability.
And the best of all?
Despite how unfair my life apparently is -children with extra support needs included -I can still smile, and smile genuinely.
That gives me warrior status when you’re so exhausted that it feels like you’re wading though thick mud while carrying ton of bricks and have no energy.
The most RECENT comment was a cashier (again) telling me that she had to call the supervisor to over ride an error she had made as she she “was distracted” by my smile. Another was, “Your smile is so genuine! It reaches your eyes!”
I’m proud of me given what that smile hides.
I’m not earning much! I’m going to cost us a LOT🥹(Our medical aid plan doesn’t cover the meds at all and they’re in the thousands every month. And there are the tests I’ll need still for my liver and kidneys before I start) I have five children with extra support needs
But I can exude happiness ANYWAY.
As Paul said, “For I have learnt in WHATEVER state I am in, therewith to be content.” My version.😊 For we wrestle against bad angels, and higher powers, not against humans. Again, my version.
AS WARRIOR!
I was content 17 years ago when ‘poor’ and washing our clothes by hand, back and swollen fingers hurting but grateful there WERE difficult formal work pants to wash. And I’ll be content today even with the call telling me “You’re getting worse.”
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.
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.
I had a lovely aunt from my maternal side of the family. Gentle, soft-spoken but firm; loving and tender; suffering greatly from the loss of a husband, a daughter, then her son in law, leaving her grandson orphaned, she was love personified.
She was the only genuine mother figure I and my cousin’s wife (Cousin being son to a different maternal aunt) have had. But Covid-19 took her, and our world, our only taste of unconditional ‘parental’ love went with her.
She often used to phone me, just checking on me, on us. Not because she wanted to know how her sister was, but because she loved ME. She never complained, just stated facts when I asked how she was.
She wasn’t well. Bone pain, diabetes complications, heart problems, in and out of hospital, in and out of comas. She suffered terribly. She wished she was dead.
And so, when Covid-19 took her, it was truly bittersweet. Finally, she was free. Finally, she was NOT in pain. No more would her days be either “not too bad” or “awful.” There was no more of a life of “bad” to “worst ever.” But oh, how I miss her. And how saddened I was that she had to suffer before finally dying.
At the start of this year when I was still semi-active on my Facebook page, I shared that finally, after 12 years of trying to get a diagnosis and cure, I got one. Except the disease is incurable and progressive.
Some girl commented, “That’s sad. Oh well! At least you know what it is now!”
Seriously, if someone hasn’t asked you to find them a silver lining for their cloud, don’t do it. Don’t find one for them. Just sit with them in their bad news. In that moment, feel with them what they are telling you they are feeling. I wanted a diagnosis so the suffering would end! Here we are in April and nothing has changed! I just have a name for it now.
I’ve not ever had a ‘happy and healthy’ life. I don’t know anyone in my life who has been in my shoes. Born too early, I was born into suffering. My first ever childhood memory is of me crying in pain after surgery at age three. I can’t describe the exhaustion of being in pain my entire life. I wish I could. I wish so much that I could give a glimpse, give people just a day of what I’ve had my entire life. The tests, needles, operations, loneliness, hallucinations, X-rays, breathing treatments, Emergency room visits. The sufferings I shared with my parents, and the suffering I hid. The extreme pain I didn’t think to share because I thought it was normal. Oh my word. How sad. How sad for the little girl that was me-not telling my parents about the leg pains, the burning, gnawing abdominal pain…They eventually found me rolling around crying silently in bed, which led to a Crohn’s disease diagnosis of seven year old me. SEVEN YEARS OLD. A junior school teacher I never told them snot even after the diagnosis, who seeing my tremendously thin frame asked if my parents don’t feed me.
And so, after decades of the same. Year after year… I am done. I am truly done. If I didn’t have children, it would be very difficult to justify staying alive. When you look at it through cold, hard, non-emotional eyes (Made that up.) , there’s no reason to keep living. I can’t be the person I wanted to be. I can’t visit the sick, I can’t drive to hospitals and find the poor and give small gifts. I can’t be a volunteer. I can’t gos day without pain. That’s kinda messed up. There’s much that I can’t do to be helpful to anyone else. And instead, I cost money and ever will. The costs will only increase. They are only increasing. I’m already going to have to pay over R2000 for today’s rheumatologist visit that a sweet friend remembered yesterday that I’d forgotten was so close. Thought I had a day to go. My ineffective pain pills from the ineffective gastroenterologist already had to be paid for by me despite my medical aid plan.
There is no silver lining. So, don’t tell me “at least” I know what it is. I wanted to know so the suffering would end. It’s not. This is money we desperately need for the children. University is coming soon. The other children need more (specifically my ‘ausome’ ones and ADHDers.) My “at least” will be like that of my aunt-my children will mourn my death, but rejoice that I’m free at last.
I embrace the end. Many of us chronic pain sufferers do. And while we wait, we hope for a ‘better’ day. And we rejoice in those who see us. Who see how hard it is, who cheer us on, celebrate our doing what’s normal for others but almost insurmountable for us.
Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content. Phil 4:11
Glass half full? Glass half empty? No glass at all? Or grateful that I do have a glass? When I think of the holocaust and how some concentration camps didn’t have cutlery and crockery so you had to find your own in which to put your once a day ‘water soup’ that glass becomes extremely precious. It keeps me alive long enough to hope for freedom.
Winter is here. And with it, even more pain. Washing my hair is painful in any weather, but winter means even light exercise is excruciating. Last week I couldn’t even do ten minutes of it. My knee and heel pain were too much for me to bear. Each step was torture. So I stopped, knowing that maybe another day would bring a bit more blood pumping through my veins.
Then my girl got sick. Or rather, she had yet a third skin infection. The word skin makes it seem trivial. But it was again as if she had been bitten by something and then the bite got infected. First, the red patch. Then the swelling and skin hardening. Then the pain. And the oozing abscess.
This time, the paediatrician also got the memo. Three times in less than a year just ain’t right. But what that means for us is that we all have to be treated. He thinks it’s staphylococcus that keeps affecting her. For those who don’t know, it colonises in the nose and skin. So on top of her bathing in hospital grade antiseptic and having oral antibiotics, we all have to have nasal antibiotics twice a day. All of us. If we had a domestic worker (aka maid) she too would have to do it.
This is where the glass question comes in today. I have to ensure that everything that comes into contact with her is washed daily. She can’t wear anything again. Not slippers, pyjamas, clothes, bedding, face cloth, towel. It’s winter! We live by the ocean! Everything is damp. Eve my salt shaker is wet! Things I washed on Saturday night are still very damp today, Sunday. Things I washed on Sunday are still wet. The drier we have is very slow and if you’re drying, you can’t wash as it’s a combined machine. I’m washing today’s bedding and yesterday’s towels, clothes etc.
My glass is half full. I have a washing machine. Our first few years married were torture. Washing things by hand when your fingers are stiff and painful is tortuous. Bending over a bath tub when you have arthritis, is horrible. I have a machine. I’m thankful. (But we’re running out of warm things for my girl. That’s the half aspect full aspect. I would definitely not complain if my glass was full.)
I am glad. Usually, my back would have been too sore for anything by 8am. On the treatment I’m on, it only gives up at around 11am. Only then do I want to cry from the pain. It could be worse! Today I haven’t felt like crying from the pain yet. And it’s 11:57am now as I edit. That’s good!
I have a glass that I’m thankful for. I was ironing Friday’s laundry. My shoulder hurts as I move the iron. My fingers don’t want to work well. My knees hurt. But, I was ironing in peace. And so we come to my other glass blessing. My girl is challenging. I won’t go into it all again, but ironing is not fun, usually. She tries to touch the hot part, she trips on the cord and j hurt my back even more trying to stop her from falling as she trips and the iron starts falling too, or she pulls me away wanting me to get her something to eat. But today, she played somewhere else. She left me in peace for the few minutes I could stand. She even left me in peace when I went to go boil water to make their oats. Usually, she’d be right there, crying, wanting to eat everything right NOW! But I mixed it up, poured in the honey and it’s cooling. And she doesn’t even know.
She was happy without me. She was happy in a totally different space than the one I was in. Bliss! For both of us!❤️
My other angel? The other twin? She too was happy without me. She has been extremely vocal about wanting mommy to do everything. She wants me to read to her, wants only me to feed her, wants to sit on my lap as I feed her, refuses to feed herself.. Wants me to put her to sleep, to put her in her room and change her for nap time. As she tells her teen sister when she wants to get her ready to bath, “No! Just mommy! Ella, just MOMMY! Bye bye!” But while I ironed and her sister finished off a past English exam paper, she took a clipboard and started drawing. Content. Content sitting next to her sister.
I am in pain. But I am in pain alone. I have space right now to go lie down on my bed for a few minutes while the children play contentedly without me.
As soon as I finish this, I’ll get up again and brave the pain. I do wish I had a domestic worker. But, I could not only not have one, but not have food either. I could be relying on others to supply that want. Given the ones I love most are also struggling, that would be awful. I know what it’s like to not have enough to give to someone who has even less. I would not want to be the one in need while they feel helpless and guilty.
My glass is full. I do wish I could afford to put my special angels in a special school like all the professionals who see them say. But look at the 17 year old overseas. The one who like my challenging girl, is autistic and non-speaking. They carved a swastika into the body of that poor Jewish boy while he was at school and nobody knows who did it. The suffering he went through is unimaginable. And he can never tell his parents who did it.
That could be my daughter. Suffering at school. Tormented. I’d gladly take all the challenges I face while caring for her and the rest and the house, than for her to be abused at school. So…I continue.
Thankful to have a glass. Thankful that there is something for me to drink.
Today is a very, very bad day. I took my last Sulfasalazine tablets two days ago. (It’s meant to be four a day.) My stomach has been BAD. It’s like a terrible IBS flare up but with heartburn since last week, and trapped liquid since Sunday. I can feel and hear the liquid in my abdomen. It’s been miserable. Sulfasalazine has been known to “tear up” people’s stomachs so much that they stop it and are put on a different medication. (I wish the patients who mention this would be more descriptive. Is what I’m experiencing what they have experienced?) As I said before, the rheumatologist said nothing about expected or common side effects so I don’t know if this is it, or the HRT. Yeah, the gynae ALSO didn’t tell me anything. All she said the first time I went to her was that if tests show I’m menopausal, she can start me on HRT. She handed me pamphlets on specific HRT meds (None of which are the one she put me on!) and the pamphlets really were about reasons to go on HRT (Reduce osteoporosis, heart attack risk, hot flashes etc) and how low the increased cancer risk is.
But again, google says it can cause digestive issues. Whatever that means.
I went off the sulfasalazine first instead of the HRT because more AS patients mention the stomach problems than do menopausal women. Autumn is here, and my joints are screaming. They were crying when autumn crept in, but today, they are SCREAMING! My sternum is aching, my knees, fingers, feet… I am in a terrible place. I’d say on a scale of 1-10 I’m at an eight. The pain and fatigue are incredible. I wish I could press the weight of what I’m feeling on you (If you’ve never experienced it) so you could understand how much of a loving mom I am to still keep smiling and talking and hugging my children. If I could, I’d put myself in a quiet hospital where no nurse will come at night and ask to be sedated till this is over.
And my stomach issues are still not perfect. But I can’t handle today. Yes, the sulfasalzine has only reduced my suffering from AS, and I am only ASSUMING that not having any since yesterday is the reason why things are so awful today. Maybe they would be ANYWAY! But I’m back on it for now.
I wish there was a way to see inside my body and figure out what is causing my digestive system to be so miserable. I wish there was a cure for AS and all the other problems I have.
I wish I was ok.
Going to see if I have any prednisone left. It’s that bad. And taking prednisone in the afternoon is a recipe for lack of sleep tonight. But, I can’t take this. I hope to return with something more entertaining or edifying or educational. But for any other chronic pain sufferers experiencing a terrible flare up and out of ‘spoons,’ I feel you. No amount of faith takes the pain away. It just helps us to live it with grace.
Our country’s Axial Spondyloarthritis Association sends out info about their global meetings. Through that, I found the British NASS. Ankylosing Spondylitis (Heresfter referred to as AS in my blog) is one of the types of Spondyloarthritis… They say that diagnosis takes around eight years and is around two years longer when it comes to diagnosing women. In fact, they used to think it’s a men’s disease. One woman was even told this year that she can’t have AS BECAUSE she’s a woman!
What is AS? My understanding is that it’s an autoimmune, inflammatory arthritis that is progressive, incurable and leads to the infamous hunchbacks you see due to the finding of the spine. Some people fuse straight as a ramrod. Once your bones are fused, you’re stuck in that position for life. So you can have people who are stuck looking down for life. It has many comorbidities and can shorten your life depending on which organ it attaches and how it attacks it. It’s scary. In White patients, the HLA-B27 gene is expected, but Black patients usually don’t test positive for this gene. I didn’t. It tends to run in families. It might be in mine.
Why “my understanding?“ Because my rheumatologist didn’t tell me anything about it!
So, as a teenager, I was diagnosed with Juvenile Rheumatoid Arthritis. I was never sent to a rheumatologist. And all the GP did was to give me Voltaren gel to put on my aching, swollen joints. For many years thereafter, I knew that winter came with terrible pain and inability to use my hands. I I wouldn’t be able to hood a mug, couldn’t bend my fingers to iron and the pain was horrendous. Winter was bad.
I was active. Jogging, exercising for an hour each day, walking to campus, walking a LOT and far, for exercise. By my early twenties, what I now see as signs of AS started up. I had a warehouse job and walking caused a lot of pain in my feet and lower back. None of the other employees complained as bitterly. I changed job but even in the next job, my back was painful. I thought maybe the nursing home residents were too heavy for me. So I found yet another job.
In 2011, I was sitting on a stationary bike when the most awful pain hit my sacrum. That’s when I started seeking help. But none was to be found. An MRI in 2015 didn’t show much. An X-ray said I had disc height loss in my lower spine but they said that wouldn’t cause the amount of pain I’m in. Nobody sent me to a rheumatologist. I was told to see a biokineticist, a physiotherapist.. None of them helped. They said it was due to low core muscle tone but I knew it wasn’t that.
A chiropractor said it was because I carried my child on my hip. (Soho come others weren’t in such pain??) I’d stand for a while and then have to run to my room to cry from the pain. Along the way, a doctor guessed that I had SI joint pain as my hip also became excruciatingly painful.
I gave up.
But the pain didn’t. It got worse over time. My joints stopped swelling as much but my lower back started to scream. By last year December, I couldn’t take it any longer. Is reached the stage where I was being God to kill me every night. Sometimes I’d try walk and my leg would buckle. I started limping and having to shorten the evening walks with my husband. High impact exercise caused a lot of pain at first, and then all exercise once I stopped high impact, would mean the rest of the day would see an increase in pain earlier in the day.
I couldn’t cook without having to take a break to lie down. I couldn’t clean. I was in agony.
I went to a pain clinic where a GP sent me for a bone scan. I have arthritis and degeneration in my pelvis, shoulders, neck, elbow, knees, right foot. Oh yes, from my early 20’s I used to beg my husband to rub my heel. The GP said I needed facet block try injections and radio frequency ablation to get rid of the pain in my joints. But this didn’t address the enthesitis the scan also found. (Inflation where ligament or tendon meets the bone.) That, plus other reasons saw me canceling the attempts at pain relief
I saw a GP who agreed with me that I needed to see a rheumatologist. But the one with great reviews, a Dr Brijlal even this year can’t tell me when she will be available. Another was only available this month, and I was desperate in December! So I took an appointment with one who was available in January. (Seems to me that the ones who have space early aren’t great. Just my own opinion and based on reviews.)
He sent me for an MRI of my sacrum after marveling that I was about to smile given the results of my bone scan. In his words, I was “full of arthritis.”
The scan showed Ankylosing spondylitis, especially in my right side. The one that frequently became so painful and locked that I couldn’t step on my right leg without lurching about and making my husband offer to carry me.
He gave me a prescription. I asked what the needs on it were. He said, “It’s painkillers. Don’t worry, I know you have chronic gastritis so it’s not anti inflammatories.” That’s all he said. No instructions, no telling me what each medication was. The pharmacist was appalled!
He’s sent me for Omeprazole (a PPI) to protect my chronically inflamed lining from the Prednisone he’d put me on. And sulfasalazine. One of the meds you start with when treating AS (and a few other arthritis, according to the insert.) This doctor didn’t tell me how many months I’d take the medication, didn’t tell me why, didn’t tell me anything. He also injected me with steroid and anti inflammatory.
That, plus my discomfort at having to disrobe and be so closely inspected have made me seek for a female rheumatologist. Another great one set up an appointment for me for NEXT YEAR MAY!! 😭Too far. So I’ve found another who will see me in the meantime in May, which is when my next appointment with the rheumatologist was to be.
I’m nervous. Some doctors have shown a very racist bent and she’s old. (As are most of them. Not next year’s one though!) But very few of us Black people have AS and the one in my SA group who does is in a different province, so I couldn’t ask her for a suggestion. This lady was recommended by one other patient. White patient.
The pain has increased dramatically. (I suppose the effects of the infection have worn off. I saw the rheumatologist early in February) It’s as if I’m not on any treatment BUT I still am not waking up begging to die in the night, so I guess the Sulfasalazine is going something-four tablets a day. The prednisone is more dangerous so I only took it for a short time. It’s for when flares are super bad.
And that is MY delay to diagnosis. I sought help in 2011 and only got a diagnosis in 2023. Many are on chemo meds. But those are expensive and most health insurance companies don’t pay for the needs unless you’re paying a lot each month. A lot lot. We’re paying a lot but not the highest amount so I’m not sure what to hope for. They can work much better but if I can’t afford it, what’s the point in hoping doctors move me onto them?
In the meantime, I wake up in the night in pain. And I spend the day in pain. Diagnosis hasn’t helped much. But it’s a start.
As for my children? My teen daughter started with the “sausage digits” maybe two years ago. Even just barely touching things would cause intense pain for her. It hasn’t progressed to other joints like it did with me. And my son has a hunched over back at his upper spine. He too gets swollen fingers in winter like his sister and I. Yesterday morning was cool and he woke with stiffness.
Our finances aren’t great but I do plan to ask the rheumatologist if they should see her. Just getting MRIs for them would take away all the medical finances we have for the year and I don’t know what bloods and scans she will send me for. Nor do I know that we’d do anything yet regarding treatment. In the meantime, we will do what the Romans do when they start to swell-NSAIDS. (Which is what the GO suggested for my daughter anyway. That plus keeping warm when winter comes.) Thankfully, they don’t have stomach problems so the anti inflammatories should be safe for them if they eat first.
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!
They said I should write a book 