You could have something incredibly wrong with your body, but you don’t know, because you’ve never mentioned it because you’ve dealt with it your whole life.
Pernicious anemia fucking sucks. You know what sucks more? Megaloblastic Anemia.
Jesus, Joy, you don’t do things by halves, do you? If they’ve come up with an answer, do they also have a cure?
It’s immediate treatment of the b12 and folate deficiency to try and stop the damage being done to my nervous system and heart. Normally it’s injections but given I’m a high risk for anaphylaxis due to the preservation methods used to keep these injections stable they’re running frantic trying to find an answer that won’t further stress my heart. I’m taking massive doses of oral supplements to try and slow the free fall but blood transfusion may be necessary to stabilize things in the interim, which is not also without its risks but given my blood cells are prematurely self destructing and potentially damaging my kidneys and liver (testing ongoing) we’ll do whatever it takes to beat the absolute shit out of this thing.
To clarify for some folk, this is not new. This is the condition I’ve likely been living with all my life and it has been gradually getting worse over the years until it hit critical point when the symptoms start manifesting in god awful terrible ways and become incredibly dangerous and hard for doctors to ignore. People can live their lives for some 20 odd years with pernicious anemia, always feeling sick, always fatigued, plagued by general malaise and various mental health symptoms, and never get diagnosed until it’s too late.
If I hadn’t been pushing tooth and nail for a b12 serum test because my dentist mentioned my mouth ulcers could be caused by b12 deficiency, none of these follow up tests would have been carried out and my condition might never have been found and I’d have continued to worsen, being told my chronic fatigue syndrome was simply worsening until it eventually killed me.
So for the love of god if you’re reading my blog cause any of my symptoms ring a bell for you, get your b12 levels checked, not just thyroid or basic iron test, a full b12 serum and folate test with a full CBC blood test for comparison with a methylmalonic acid (MMA) test and also a mthfr test (mutation that stops you absorbing b vitamins)
Rule this shit out before you let anyone diagnose you with chronic fatigue and brush you aside for the next ten years cause if it’s a chance it’s malingering pernicious anemia you have a finite window of time for treatment before damage becomes permanent and good god if I can save anyone else from going through this, well, it won’t be worth it because there is nothing worth this, but it’ll give me solace.
Take care of yourselves loves, advocate for yourselves, be fierce, be relentless. Thrive. You deserve it.
So one of the most frequent questions I get, is how do I work at a computer all day and avoid eyestrain, which is something people with chronic fatigue can be especially susceptible to, especially given our sensitivity to bright lights. And the answer is: I don’t. Working at my desk all day every day absolutely hurts my eyes, and makes me more prone to migraines and profound exhaustion which if I’m not careful can put me out of action for several days.
I do manage to limit how often this happens though by making sure I take care of myself, and this includes things like taking regular breaks from the screen to rest my eyes, using a screen dimmer like “night mode” constantly (comes as standard with Windows 10, might also be in other versions but I don’t remember) or a program like Flux which
adapts to the time of day, warm at night and like sunlight during the day, so that looking at your screen isn’t like staring into the sun at 3 in the morning. I also make sure my prescription for my glasses is up to date, and also wear glasses that have a special UV filter that gives everything a bit of a yellow tint to soften the light. Some people say they work, some people don’t. I’m someone who is particularly sensitive to light, and I have found the slight yellow tint to be beneficial to my eye health.*
But even doing all these things, opening Word can absolutely feel like you’re searing your retinas off when you open up the document and the white expanse of doom takes over your entire screen, like this:
This right here? Makes my myopia extremely pronounced in my right eye, and makes the visual floaters that I get extremely hard to work with. There are days when it feels like all I can see are those little black squiggles over my vision, and the white screen is absolutely to blame, even with all those other measures in place. (I have absolutely worn sunglasses indoors to get around using software that only lets me use a white screen.)
And it’s been brought to my attention in answering lots of questions about eye health and managing my symptoms, that some of you are not aware that Word doesn’t have to be like this, when it can in fact be like this:
And it is so much better for you. I mean it doesn’t have to be this specific color setting, you can play around with it and find the color setting that doesn’t hurt your eyes or trigger migraines/makes it easier for you to read and follow text, but I have found dark grey and blues to be what works best for me, and the way you change these settings is to first of all go into File > Options > General and then changing the Word theme from “Colorful” to “Dark Grey”
Which will give you this look:
And for some people that will be enough of a reduction in white screen to help with eyestrain and other problems, but if you are like me and the bright white is just playing havoc with your vision/processing, you can go up to the Design tab (it’s between Insert and Layout usually) and change the color of the text file page:
Like so:
Like I said, dark greys and blues work best for me, and this is what manuscripts look like when I am reading them for work, but you can totally play around with it and find what works for you, and hopefully help yourself avoid some of that “oh god my eyes feeling” that happens from staring at the blank white page for hours on end before you alt out the tab and pull up tumblr instead.
Anyway, hope that helps some of you? Good luck? Don’t hurt yourselves unnecessarily? Go take a break from your screen right now and get something to drink? idk, just take care. You deserve to.
“The medical establishment in particular has been slow to comply with the ADA.“
“The medical establishment in particular has been slow to comply with
the ADA. Dr. Lisa Iezzoni knows why. Not only has she researched the
topic, she has lived it. At the end of her first semester in medical
school in 1980, she was diagnosed with multiple sclerosis, which
complicated her future — but not nearly as much as the prejudicial
attitudes that had already shaped the profession she hoped to enter. In
short, she successfully completed her studies and graduated from Harvard
Medical School but was prevented from applying for an internship or
residency by HMS higher-ups, whose biased, uninformed views on her
disability led them to withhold support for credentialing.
Since then, Iezzoni, now a professor of medicine at Harvard Medical
School, has distinguished herself as an expert in healthcare inequities,
especially for the disabled community. In a 2016 American Medical Association Journal of Ethics
article, she writes that physicians “have little understanding about
living with disability or the consequences for daily life or
health-related behaviors.”
She cites a seminal study of the attitudes of
233 doctors, nurses and emergency medical technicians toward treating
persons with spinal cord injury. She then compares their responses to
people who actually live with SCI. One statistic stands out starkly: Only 18 percent of the medical personnel said they could imagine being
glad to be alive following SCI, compared to 92 percent of those living
with SCI.”
Chronic pain is pain that is long lasting but does not always need to be present 100% of the time to be considered chronic. To be considered a chronic condition or symptom, it typically has to be present for 3 months or more.
For example, migraines are considered a chronic condition, even though they are (hopefully) not always present. The episodes themselves may be classed as acute attacks, but the condition itself is usually considered chronic as it can be lifelong for a lot of sufferers, even if their symptoms are well managed.
Back pain or knee pain can also be considered chronic, even if it is intermittent and only flares when you over exert yourself. But the thing is, exerting yourself shouldn’t cause that pain to begin with, not if the joint/muscle/area is healthy. A lot of folk don’t realize they’re living with low level chronic pain simply because it’s intermittent and they’ve been conditioned to ignore pain, thinking that if they can power through it’s not serious or necessary to treat (or quite simply, because they can’t afford to go see the doctor for that low level ache that’s always been there.) Which is how a lot of problems can start and manifest later in life as more acute chronic pain that is harder to ignore.
Hopefully that makes sense?
I know some doctors will class it differently, but 3-6 months of pain, even if it’s intermittent, is usually when something becomes classed as chronic, even if it’s “mild”.
{edit} Also thank you! That’s a really sweet thing of you to say 🙂
*looks at article, looks at tumblr fam and years of posts saying exactly this* Hmmm. If ONLY there were a way for the medical and scientific institutions to have known this already. It’s almost like … Selective Deafness or some other bullshit.
I am shocked. Do you see my shocked face? This is my shocked face.
What’s that? It looks a lot like my “unsurprised and so tired of this shit” face? Yeah. They do look a lot alike don’t they.
Which mainly serves to say for both of us: WTF makeup industry?
EYE MAKEUP WITH PEANUT PROTEIN IN IT
Okay I knew about wheat protein in eye make up but PEANUT?!
MOOD
I’d really like to know why there’s gluten in shampoo. I don’t have celiac but I do end up with a ton of shampoo in my mouth.
Wheat protein is a common ingredient in a ton of cosmetics. In shampoos it can be part as a thickening component (you will find wheat or wheat by product in a lot of thickening and volume shampoos for this reason) but primarily it’s used in its
hydrolyzed form as
emulsifiers and stabilizers which make the products more shelf stable and effective.
It’s also one of the main ways vitamin E oil is manufactured, which a lot of folk don’t realize, including some doctors who will tell you to use vitamin E oil for your allergy related hives, only for you to later find out you’ve been slathering your allergy onto your allergy related hives. So that’s always fun.
This is me with sunscreen, unfortunately. I’m allergic to something in chemical sunscreen, and for years I had no idea.
A lot of makeup has sunscreen in it. Many times, they don’t tell you this. So here’s what I learned the (very) hard way: if makeup says it’s “anti-aging”? That’s code for “sunscreen”.
Wait hold up I respect everyone in this thread but nobody is going to question the fact someone in it said they end up with a lot of shampoo in their mouth?????
Not really *shrug*. There’s any multitude of reasons someone could end up with shampoo in their mouth, ranging from mobility issues to just plain sleep inertia and winding up with a mouthful of suds cause you yawned at the wrong moment lol.
Also @shofie-irl thank you for that heads up about the anti-aging creams. I developed a new allergy to chemical sunscreens last year that put me in the ER so that’s good to know!
That chronic illness feel when you’re trying to figure out what is triggering the “shivery” ill feeling that signals something is causing a flare up like:
“what is it girl, who is doing this to you, is it an allergy? chemical exposure? do I need to take X med? what is it, did we not eat enough, low blood sugar, are we dehydrated? food contamination? Did little Timmy fall down the well again, what is it?”
WAIT THAT’S A CHRONIC ILLNESS THING?
Can be. A lot of the time it can get written off as “nerves” (and sometimes it is anxiety) but a lot of us go through jittery shivers or even random fever feelings when we’re having a flare up.
“Omg look at this fucking shit, gluten free mascara, ahaha, people need to be fucking stopped.”
Yes, I’m sure the person with a wheat allergy wanting to avoid putting wheat containing things near their eyeballs is truly the reason society is failing.
Also if anyone does actually need gluten free mascara, Zuzu Luxe is one of the best I’ve been able to find. Hardly clumps and doesn’t flake off like a lot of the others. Their other products can be a little hit or miss texture wise, but the mascara is great.
I once saw a person point out that common allergens are in so many things, and it even has to do with “this facility uses it in another product but it’s still the same facility” and I stopped laughing. And then I felt bad. I was ignorant, but I didn’t think about like. My corn tortillas better not have gluten! They’re corn! And then I realized….same facility. Airborne particulates. Someone working on one line, accidentally dropping particulates in another line just by walking past.
Cause there are people who are *that* sensitive. And they deserve to be protected and have safe products.
I specifically do not take issue with people just not knowing things. Cause why the heck would anyone know things like that unless they ever had to? Why would you know wheat is a common ingredient in things like mascara or shampoo? I sure as shit didn’t till I started to piece together why my body went into meltdown every time I washed my hair.
What does get to me is how inherently shitty some people are about it. Like why is the first go to for things like this mockery? Why? I mean I know the answer is “society is inherently abelist even if people don’t realize they are doing it” but I’m still allowed to be frustrated by it. (It’s the same with infomercials. Those products are not lazy or worthless, they are designed for people with disabilities!)
And I know this seems like such an over reaction to something like someone in Walgreens being shitty over gluten free mascara haha. But it’s so much more than that.
So much of my daily life is emotional and mental labor just trying to spoon feed people how not to be unthinkingly meanall the time. And
it’s not like I can ever stop because this is my life. I am living in a
world not designed or meant to include me, so constant emotional and
mental labor is required to justify both myself and the things that make
my life easier.
And I wish people would just think with a little more kindness sometimes. That’s all.
Also people have a weird desire to catch you “lying” about an allergy? There’s a preservative used in a lot of artificial caramels that I’m allergic to, and my aunt used to get so mad because she was convinced my mom was lying about it. Once when I was a toddler she offered me a bowl of ice cream with this really smug look on her face while I ate it—a look that quickly died once I started projectile vomiting all over her brand new couch. Yup she hid the caramel in the ice cream.
Feeling miserably sick for a while aside, the look on my aunt’s face at the state of her couch was rewarding
HGSKL ALL THE TIME, PEOPLE DO THIS ALL THE TIME AND IT IS NOT OKAY
