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@chronically-me-blog
A small explanation of the spoon theory
Hate this
So because I have a autoimmune disease I ended up with shingles again for the 3rd time. This time however the rash is much larger and the pain has been horrible. I couldnât even sleep then first night it was so bad. Thankfully I was able to see my doctor yesterday and he gave me some meds to help clear it up and to help with the pain. I just canât believe how bad it is this time it seems to just get worse every time I get it. I just hope it clears up soon because this sucks so much.
This is something someone with a chronic illness deals with sometimes daily. It can be hard to keep friends when you have to cancel plans. But just know itâs not our fault itâs our illness it is not intentional and trust me we feel awful when this happens. So next time your chronicly ill friend cancels just tell them you understand and itâs ok thatâs all we want to here.
Endo myths
Happy
Finally got my CBD oil in and Iâm so excited. I really hope that it works and helps with my pain. So far it has been helping a little so Iâm excited to see how things go with it this week. Fingers crossed it will give me better pain reliefđ¤đť
Endo Halloween đťđ
What itâs like having an invisible illness
What (besides medication) do you use to help your chronic pain
Please feel free to add on
Heating pad
Hot/cold pack (itâs actually designed to help pelvic pain)
Epsome salts
Bath bombs
Hot Tub
My Livia (a special tens unit for pelvic pain)
Hot/cold back patches
Cane
Wheelchair
Comfy pjs
Distractions like my phone or computer
Naps
Always remember
Doctors told her there was nothing wrong. But she knew her body.
(Continue Reading)
TheNib.com
@thenib
some nice bits that were on the link! medicine has a massive misogynistic bias it needs to address.
my family has a history of hypothyroidism, but my mom wasnt diagnosed for decades. she was misdiagnosed and only symptoms were addressed without searching for the actual reason. even now, because how how long she went untreated, her bodys systems are extremely taxed, causing other issues. her body is permanently off the deep end to some degree because doctors refused to investigate to a proper degree.
if you have consistent symptoms, keep pushing. the doctor is not always right. keep pushing.
Doctors really need to think. >:(
I was in and out of hospitals for 20 years and the doctors said it was asthma and a lot of stress and being over weight. Went to a new doctor for the first time this summer and he sees all my blood results and was shocked that no one looked into my high WBC count. Turns out I have a rare blood disease, that untreated can be fatal.
Itâs ridiculous that doctors see female health problems as just âfemale problemsâ and not real concerns
This is why so many diseases are âmore common in menâ no one tries to diagnose women
Earlier this year, I had a severe allergic reaction to Penicillin. My throat began to close up, and my body was convulsing so badly that when the paramedics finally got to my home it took two of them to hold down my arm just to check my pulse.
The entire time they were here (as far as I can recall, at least) and in the ER itself, it was insisted repeatedly that what I was experiencing was just an anxiety attack, just an anxiety attack. Do I have a history of anxiety? Clearly Iâm *not* having an allergic reaction, even though my family has a history of Penicillin-based allergies! It must just be a woman having a âfitâ.
Itâs a bit hard to insist that, no, I know what an anxiety attack is because I have experienced plenty before and this is *not* one when youâre so out of it that the only thing you can open your mouth up for is to puke half your guts out, but I did. So did my mom, much more vocally, and *finally* hours later we got the nurse practitioner to listen to us.
I was tested to see if I have a Penicillin allergy, and guess what? I do.
Tl;Dr, being female or female-presenting in this society is basically a fucking death certificate if you ever need medical assistance. Donât be afraid to insist. Push, and push for those you love, too. The embarrassment of making âa sceneâ is nothing compared to the alternative.
It took me until I had a severe concussion to be diagnosed with Gravesâ disease and that it took a year after the concussion to find it. I had years of being tested as a child for learning disorders and ADHD because I was so hyperactive and I couldnât concentrate but all the tests where negative. Then in grade 8 I had a skiing accident which gave me a concussion. However it seemed not to go away and I started to get weird symptoms. I couldnât sleep, (to the point where I would sleep 4hours a week and still have energy as if I slept all night) I was hungry all the time, I couldnât stand the heat and would get agitated, I was severely depressed, my heart was always beating fast even when sitting still. These went on for a year until one doctor finally decided to check my thyroid. Well it turns out it was so bad that he said if I hadnât come in when I did it would have only been months before my heart gave out. Thankfully now Iâm on medication that has kept things under control but I just wish they would have found it sooner and maybe I would have done better in school if they had.
The medical community on literally every female specific health issue ever: âvery common conditionâ âno known causeâ âno known cureâ :))))))
What the fuck is tumblr? Like honestly what is this? Do you guys pull shit out of the inner most depths of your rectum and then just throw it on your keyboard and have it turn into a post???? This site is something else what the fuck is wrong with you people????!?!?
Endemetriosis
Vaginal Thrush
Menorrhagia
Polycystic Ovary Syndrome
Fibroids
Very common conditions, causes are unknown or only speculated, long term cures have not been found. Most can cause chronic pain or discomfort, all can seriously impact your quality of life.
Men are so damn privileged they canât even imagine female bodies have different healthcare needs than theirs and that our healthcare needs are important even if they canât be affected by one of these conditions.
Endometriosis causes excruciating pain and is a leading cause of infertility. Thrush is extremely uncomfortable, and expensive to treat repeatedly; over-the-counter preparations rarely completely eradicate it. Menorrhagia, which I have, makes you anĂŚmic. PCOS causes hormonal symptoms that are socially difficult (facial hair, acne, hair loss, weight gain). Fibroids are so common, and are often treated with a hysterectomy.
Add in fibromylgia, which affects 8x as many women as men, as well as lupus (and almost any other autoimmune condition), systemic exertion intolerance disorder (SEID), iron deficiency anĂŚmia (all of which affect more women than men), and you have well over 25% of childbearing-age women globally living with chronic pain and tiredness.
Chronic pain is overwhelmingly experienced by women, and women are less likely to be taken seriously or given treatment by medical professionals. I went through two years of diagnostics to finally find out I had occipital neuralgia; I felt doubted when I described my pain at every step of the way, but was lucky to have a partner who was persistent in helping me get treatment.
Basically, this is a huge problem, and also one of the reasons I have been considering medical school.
Donât forget that most pharmaceuticals go to market without ever having been tested on people with a uterus, lest someone get pregnant⌠seriously that is the whole rationale behind not testing >50% of the population. This has been legislated against in some countries, but still persists in the of majority drug development because of other regulations, and traditions and laziness. The use of a drug is of course monitored in the population after release, but the people âtryingâ it in this capacity get none of the insurance, close and regular medical examination or monetary benefit of essentially being in a late stage drug trial. Drugs that are pulled from market after release are sometimes done so on the basis that the dosage is just too high for females/afab people and this is, of course, after theyâve experienced the adverse affects.Â
This is why if you get pregnant your doctor will take you off basically any and all medication youâre taking (including mental health medication, canât imagine any implications/dire consequences there), not because they know it will have an adverse affect on the foetus but because they have no idea. How wonderfully kind of them to prioritise the health and life of an unborn foetus over that of a living person, letâs just hope they donât become ill whilst pregnant. How charmingly logical it is that they wouldnât even bother to test drugs in people with a uterus because itâs all too difficult and gosh, darn what an ethical conundrum weâve been faced with, letâs just not! Which is so in the spirit of capital S, Science! Â
Sources: Nature, Nature, Medscape, Biomedcentral.
Indeed, the issue is so severe that, in many cases, folks with uteruses are routinely told that their diseases and disorders are not, in fact, disorders at all, and are just a normal part of having a uterus.
Take menstrual cramps, for example. Everybody knows that cramps are a normal part of menstruation, and that virtually all people who menstruate experience them throughout their lives, right?
Except thatâs not right at all.
Yes, itâs true that about two-thirds of individuals who menstruate begin to experience menstrual pain during adolescence, but itâs basically a side effect of puberty, and normally subsides by your late teens. Only about 20-40% of menstruating adults experience menstrual pain on a regular basis - and according to some estimates, as much as 80% of that figure is due to undiagnosed endometriosis or some other underlying medical condition.
Yeah, roll those numbers around in your head: if youâre an adult who experiences menstrual cramps, itâs overwhelmingly likely that your pain is a symptom of some potentially serious medical condition.
And yet we tell folks itâs just a normal thing that everybody has to deal with.
Bonus round: Look up PCOS and gender identity.
Then look up PCOS and diabetes.
Ok, to show how incredibly important this post fucking is, I just looked up endometriosis and I match just about every sympton, and it would explain not just my incredibly painful periods but many other things as well. I had no idea this existed. Please, read this post and reblog this so others can learn.
I will reblog this every time because my cousin (a cis girl) went through seven years of pain without being taken seriously until SHE suggested it was endometriosis. And thatâs not even unusual - thatâs the average amount of time it takes between first symptoms and a diagnosis of endometriosis.
Only 20-40% of menstruating adults experience cramps???? Fuuuuuck >:[
Yup. I had to mention endometriosis, I had an ultrasound and it showed nothing (someoneâs it can take surgery to find it) and my doctor said that until I wanted kids, it wasnât worth looking into and I should just go on full time birth control pills. Unless I want kids Iâm not allowed to know what the fuck is happening with my body.
^ the kicker? Some birth control can make endo worse because of the types of hormones that are used in them. Endometriosis is mentrual tissue outside of the uterus that sheds when the lining of the uterus sheds but since it has no where to go it just bleeds inside the body. The endometrial tissue shedding and building back up is what causes the chronic pain associated with the illness because we have connective tissue that holds our organs in place and itâs pretty delicate and when stuff attaches to it that shouldnât, it tends to protest, heavily.
I know someone who took bc and now has endo tumors all over her body including in her arms and legs. But her drs wouldnât change her bc when she said her symptoms got worse. But she couldnât go off it cuz she has pcos and her periods literally would not stop without bc to regulate her hormones.
Bc controls menstration. Often encouraging the lining to build up (cuz thatâs what actually stops the active bleeding by the way. It doesnât just empty out the uterus. If the lining didnât start building back up youâd just keep bleeding cuz those cells would try and stick and wonât and just break down and come out. I know this is a thing because this is how I got my pcos diagnosis. I almost bled to death because I lacked enough estrogen and my lining wasnât sticking and just shed and shed and shedâŚ)
And the type of bc that causes this endo reaction is not universal. It is literally different for everyone so youâd have to find out essentially like trial by fire.
This is all so serious too. My doctor refuses to give me any treatment for my PCOS other than birth control because she..
1. Doesnât really know how to treat it
2. Says Iâm âtoo youngâ⌠(Iâm 20)
3. Says she doesnât want to really do anything until Iâm trying to start having kids⌠WHICH I DONâT EVEN WANT! (I donât want to get pregnant, I want to adopt)
Sheâs pretty much said she will only try different medications when Iâm older and trying to get pregnant. So I stopped taking my birth control because it was fucking me up even more mentally and making my acne worse than before and now Iâm waiting to get insurance again so I can hopefully find a new doctor who will actually try to help me. đ¤ˇââď¸đ
This is important. I spent a whole year in and out of emergency rooms almost weekly being told my pain was all in my head to find out I not only had Endometriosis but also PCOS. The doctors kept saying I was âtoo youngâ to have endo even though Iâm the third generation in my family to have it. I had no idea that severe pain wasnât normal with periods until I ended up in hospital because the pain was showing up outside of my cycle. I spent 6 years dealing with horrible period cramps that would sometimes make me miss school all the while no one told me it wasnât normal.
This is a way better pain scale. Iâm almost at 14 today.
tbh abled people should feel more grateful for their ability to stand in the shower for long periods of time. I take a 3 minute shower and I end up face-planting while getting out of the bath and almost passing out while trying to get dressed.Â
Self care is whatever you want it to be and whatever helps make the pain go away and help with any mental strain. On my worst days I like to make some tea, watch a Disney movie and take a bath with a bath bomb. This helps me to calm down not only my mind but also sometimes my pain.
What do you use for self care?
Pain insomnia
Is one of the harder symptoms of chronic pain, itâs when youâre in so much pain you canât sleep even when itâs the only thing you want to do. I have been dealing with this all week and itâs horrible. Iâve been up till 5am almost every night just hoping to be exhausted enough that Iâll sleep. And of course because of this Iâve been sleeping in which means at my normal bedtime Iâm not tired. Itâs a vicious cycle that just ends with me being in more pain and exhausted.