I write a lot about my disabilities and illnesses. I’ve discussed what trips to the hospital are like and what a regular day can look like. I’ve shared advice for new patients based on what I’ve discovered myself in the time I’ve lived with them. I have never, however, taken the time to just put together a list of definitions of what those various conditions and disabilities are.
So without further ado, I introduce a glossary of my weird body stuff.
Continue reading “Understanding Ania’s Weird Body things”
On my Facebook memories page, I found an old Tumblr picture that includes stories from a series of girls talking about how their appendix burst because they didn’t realize the pain they were feeling wasn’t cramps. The post goes on to explain the difference between menstrual pain and appendix pain. The stories were a way for girls to discuss just how painful cramps can be – that appendicitis, which is known to be extremely painful, was not different enough from their regular menstrual pain to be noticeable.
I had shared the post, along with my commentary that the suggestion to talk to your parents or school nurse about pain, even if it was “only cramps”, ignored the reality of most people who experience menstruation who are told that they are overreacting and to suck it up. Many of us have been told that all women deal with it and that it’s not that bad. Even when my cramps would leave me shaking and with a fever, I was expected to go to class and carry on as though everything was normal. After all “every woman goes through the same thing”. (Not all women actually, and not all people who do are women, but that’s another post for another time). Continue reading “Fear of Menstruation Is Why I Can’t Walk”
Ever since I discovered and wrote about the importance of treating ADHD if one also has depression, I have found myself thinking a lot about why this is the case. I’ve floated hypotheses that it has to do with regulating brain chemistry, since both conditions can be caused my imbalances and it is not unreasonable to think that the two might interact in some way.
I was lying in bed, my mind racing and thinking about the dozens of different things that my mind seems to decide must be thought about as I desperately attempt to fall asleep, that I began to think about the many ways that the two mental illnesses present in terms of symptoms. The more I thought about it, the more I realized the myriad of ways that the two reinforce one another. Continue reading “When Depression and ADHD Collide”
Today is World Toilet Day: A fact that seems to amuse a lot of people. Living in North American, it can be pretty easy to take toilets and running water for granted. Bathrooms have become such an integrated part of our daily lives and routines, it can be hard to imagine not having regular access to a toilet. Perhaps on a camping trip, or in a particularly deserted area of town one might be inconvenienced temporarily, but on the whole most of us have a reasonable expectation of having access. As such, it might come as a shock to learn that 1 in 3 people in the world, do not have safe and adequate access to toilets or running water.
Running water and the flushable toilet were not just breakthroughs in convenience and comfort. The development of the toilet meant serious progress in overall public health.
Continue reading “World Toilet Day”
One of the most annoying things we face as people with chronic illnesses is people who decide they know how to cure us, while having no idea what we are going through. People who don’t realize how condescending their advice ends up being, and frequently how wrong or even dangerous it is. The constant need to give advice or to become the recipient of every single article on the subject of our conditions is something a lot of us put up with, if not actively struggle against.
Most of the time, the urge is spurred on by good intentions. So it gets me particularly angry when it is the failure of science reporting that is the cause of the most recent flood of misinformation being pushed my way.
In the last two months, Crohn’s Disease has trended on Facebook twice: once to brag that a vaccine against Crohn’s has been discovered (it hadn’t) and once to let everyone that they’ve discovered what causes Crohn’s (they haven’t).
In both cases, the articles were written in a way that suggests that the authors (or their editors) had no real understanding of science. That or they willingly inflated a story knowing it was fraudulent, and supported their claims with information that appears significant when it isn’t.
Continue reading “Crohn’s cause by Evil Eye; Cured by Unicorn Tears”
Almost every trans woman I know is either autistic or makes me wonder if they are. My AutDar is well-tuned enough that I trust it over most other criteria available to me, and it pings almost all of them. Some evidence suggests that gender dysphoria is much more common among autistic people than in the general population, so this is likely not merely anecdote. Those studies need a lot of cleanup to actually mean something (not least to get asshole charlatan Simon Baron-Cohen’s name off of them). Either way, whether we’re more abundant than expected or not, this combination makes our experiences rather…unusual.
Continue reading “Being Trans and Autistic Is Weird and Common”
Jane lounged in her camping chair, nearly dozing. Her grip on her fishing rod was loose, and she might have lost it already if Froslass hadn’t been keeping an eye on it. She wasn’t losing any fish, at least, on this slowest of fishing days.
She had earned this relaxation. Jane had come a long way, and the crowd of Pokémon surrounding her had borne witness to her progress. Not so long ago, the thought of napping outdoors in shorts, sandals, and a tank top, legs and arms taking in the gentle sun, a thin seam of midriff peeking out between the pieces, would have been terrifying. She feared for her life, then, with Team Rocket still livid over her defection. Before that, she feared herself, and what becoming herself would mean. But now, with Arcanine (“Growly” to her) and Cacturne napping vigilantly behind her, Sylveon curled up at her feet, Froslass and Chimecho on her lap, and Joltik enjoying the view from atop her head, she never felt so free.
Continue reading “Angling For Myself: A Jane and Jessie Story”
I know almost immediately that it is going to be a bad one. It’s always preceded with this pain that happens just below my tailbone. It’s not pain exactly, but it’s the closest description to the sensation I have. Sometimes, it happens after a fairly severe stomach cramp, sometimes I feel the cramp in my back. I know I don’t have long to find the bathroom.
If I’m at home I just run down the hallway to the bathroom, but if I’m out and about, the search may be more involved. If I’m driving, it means pulling over at the first place that is likely to have a public restroom. Fast food restaurants are the best. They usually have decent bathroom access, and few of them have locks on the door. Sometimes gas stations work, but they’re not always reliable. I pull over and I run inside, and if I have to, I ask to use the restroom.
If I’m not driving, but I am out somewhere, then I run for the nearest public restroom. Chances are I know of several within my vicinity.
I carry a map in my head of where the nearest washroom is, to the best of my ability.
I do this, because I know what it feels like when I don’t find the washroom in time. I know what it feels like to lose bowel control and the feeling of soiling myself. The whole experience is unpleasant. Although the spasms in my bowels prevent me from being able to stop it, it doesn’t mean that it comes without pain. The always sensitive skin of my bum will often burn or sting.
Then there is the burning sensation of embarrassment.
Continue reading “Bathroom Matters”
I’ve had a lot of people come up to me and ask how to bring up digestive symptoms with their doctor. It’s easy to have problems dismissed when talking to doctors, especially for those people who are perceived as being female or are female presenting.
I don’t have all the answers. I still have trouble getting taken seriously by some doctors, despite everything that is on record as being wrong with me physically. I do have some suggestions, that I have learned from my own experiences.
Please note, I will make mention of bowel movements and bodily fluids, so please keep that in mind while reading.
- Keep track of your symptoms
Questions you are likely to be asked regarding pain:
What type of pain? Where is it? Does it get worse after eating? How long does it last?
Questions you are likely to be asked regarding blood or stool:
What is the consistency (Bristol Stool Chart)? How much blood? Was it dark red? Clotted? Pink and watery? Does your stool contain what looks like coffee grinds?
By having answers ready for these questions, you can move the process along more quickly since the doctors will have a better idea of what they are looking for.
Continue reading “How to Talk to your Doctor about Digestive Issues”
It’s weird. Usually when I leave the hospital, I feel weak but I feel… better than I did?
I’m not feeling as bad as I did when I went in, but I’m not feeling as much better as I usually do. I’m wishing they left me on the IV steroids longer than they had, instead of switching me straight to oral so quick.
A lot of the “feeling better” in hospitals is artificial. It’s not hard to feel better when they make an immediate medical response to every symptom. Feel nauseated – BAM – IV anti-emetics, feel pain _BAM- sub Q dilaudid.
They bring you food at regular intervals, they keep you to a regular pill schedule, hell, you don’t have to get out of bed to get the medicine you need. There is no effort greater than pushing a button to get from feeling bad to feeling better. The nurses even bring you blankets from a heater if you are feeling cold.
Continue reading “No More Unicorn Blood”