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”
I’ve been coming up with my own recipes for a few years now. I love to play in the kitchen: from combining strange flavours, to trying to make things as much from scratch as possible, to canning my own food and making my own spices, and more.
The last few years of living in difficult financial circumstances has also meant that I have learned several tricks for as many parts of whatever ingredient I use. Thrift led to the creation of my tomato powder, which has added an entire new dimension to some of my sauces and rubs. Thrift led me to figure out how I could make three separate meals with one roast, and the prep for all three involved just one slow cooker.
All of my recipes have to work within the limits dictated by my crohn’s. Not just ingredients, but also textures and smells. The wrong combination of any of these can lead to an unpleasant day or even series of days. It can mean that my symptoms get worse.
I want to share all the things I’ve learned with other people like me. Other people with crohn’s and gut issues, other people who need to know how to make great tasting food on a limited budget, and other people who want to learn how to do some really interesting things in the kitchen.
My stretch goals also include goals that could bring me to a community center or classroom near you! You could get the chance to have me cook you dinner.
If you are able and willing to donate to help make this the best cookbook ever, please do.
If you can’t donate but want to help, help me spread the word by sharing my Indiegogo with your friends on Facebook, on twitter, on Instagram, anywhere where people might see it and want to donate to help make it happen.
I’ve known for quite a while that one of my trigger foods when it comes to Crohn’s is dairy that contains lactose. I’ve been able to switch to lactose-free milk with success, and occasionally I can find lactose free sour-cream, but when it comes to things like butter, soft or creamy cheeses, I haven’t had nearly as much luck.
Because of my arthritis and prednisone, it is pretty important for me to do what I can to include calcium in my diet, however, many non-dairy sources are also a problem for me digestion wise.
I was fiddling around on Pinterest looking at interesting recipes as I am wont to do, when I found some recipes on how to make homemade Ricotta cheese. Curious I decided to give it a try with Lactose-free milk and whipping cream.
Continue reading “Homemade Lactose-Free Ricotta”
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”
CN: Discussion of Ableism, Mental Health, and Suicide
If you suffer from Anxiety or Depression, or have friends and family who do, you may be familiar with the concept of troll brain. It is the thought manifestations of your disorders: lies your own brain tells you in order to prey on your fears and insecurities. Part of learning to cope with anxiety and depression is learning to recognize those thoughts that are lies, which are your brain trolling you, and separating them from your real thoughts. It’s not easy, especially since your brain obviously knows you better than anyone else. It’s the manifestation of all of your fears. That you are worthless. That no one loves you.
But what happens when society reinforces the same ideas as your troll brain? What happens when the message you are given everywhere you look reminds you that the vast majority of society agrees with the lies your brain tells you. This is the reality for many disabled people. In some cases it is a contributory cause of their depression and anxiety.
Continue reading “When Society Echoes your Troll Brain”
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”
Over the last week, I’ve been taking my girls Tsuki, my 11 year old Schnoodle, and CJ, my 8 month of Chihuahua to the dog park on a daily basis. They love it, they get great exercise, and CJ gets to work on being well socialized with other dogs. Today’s trip was planned to coincide around a tutoring appointment Alyssa had. I would drive her to her appointment, go pick up a free drink from Starbucks, hang out for a bit, before picking her back up again and heading to the park.
Everything was going as planned until Crohn’s once again got in the way. I had to go to the bathroom, but had both my dogs in the car. Stuck and desperate, I blasted the air conditioning until I parked, then wrote out a quick note for any worried passersby: “Bathroom Emergency. Dogs have fan. Back in < 2 min”. I cracked the two front windows about an inch, enough to let some air flow, but not enough to let my small dogs escape into traffic. In addition, I left the doors unlocked, just in case.
I ran for the bathroom and did my business. From where I was, I could hear it when Tsuki, and then CJ started barking loudly. I finished up as quick as I could, all told about a minute, maybe a minute and a half. As soon as I got out of the bathroom I was accosted by an older woman, who asks me if those are my dogs.
I could already sense that this was about to be trouble, but I answered yes.
Continue reading “That Doggy in the Window”