CN: Unedited stream of consciousness.
I spent the few days before Thursday Night Faction this week, trying to decide whether or not I should even go. You see, last week after faction, the fact that my Remicade had been delayed made itself felt. Strongly.
Strongly enough in fact, that on Friday evening, I finally caved and begged my roommate to take me to the hospital. My pain was too high to manage on my own, and my constant trips to the bathroom made me start to worry that C.Diff might have decided to come back into my life… and guts.
The three days I spent in the ER were ridiculous. Due to a massive influx of flu cases, there were no beds available at the hospital. Despite deciding to admit me that same night, I never actually made it out of the Observation wing.
Because of the pain I was in, I decided to go to the closer hospital, rather than the usual one I was in. The GI staff on call at that time has their primary specialty be the liver, so they really weren’t sure what to do with me. Sadly, it showed. Had I known this at the time, I would have written out for them exactly what to do to get me better enough to send me home, but unfortunately, it wasn’t really till Sunday night, that I realized that I wasn’t really being treated… at all. They were just running tests but not actually taking care of what was going on.
Accessibility Devices are, for all intents and purposes, a part of our bodies and should be treated as such.
DO NOT touch an accessibility device WITHOUT CONSENT. In case this is not clear, I mean the consent of the disabled person.
Do not touch a wheelchair without the consent of the person in it.
Do not touch a walker or a cane without the consent of the person using it.
Do not move a walker or cane out of the way, even if the person isn’t using it right now.
Do not push a wheelchair without consent, even if you are just trying to help. Even if you just want to make it easier for them to get up a hill.
Do not put a cane where the person who needs it can’t reach it. It is not funny.
Do not take a person’s prosthetic. It is not funny.
Do not push a person’s wheelchair out of your way, or to make them go faster. If you wouldn’t shove someone out of the way, then consider pushing someone in a chair as the equivalent.
Do not take a person’s hearing aid. It is not funny.
Do not try to make a person’s hearing aid produce feedback.
Do not push someone wearing a hearing aid into a pool, or spray them with water.
Do not touch a service dog. Doesn’t matter how cute it is. Doesn’t matter how small it is. If the dog is wearing his vest or currently working, DO NOT TOUCH THE DOG. (Or Any Other Service Animal)
Do not talk or stare at a service dog – dogs are social and if they are paying attention to you they are not paying attention to their job. They’re trained, but they’re still animals who CAN get distracted.
Do not put a walker or a cane somewhere else, even if it is not currently being used.
DO NOT try to help by lifting their walker or the person themselves unless asked. If you offer, respect their no.
I’m multiply disabled, by whichever model you use. I am on disability assistance and I live in Canada where I even have access to healthcare. Given all this, you might think that the fact that I still have disability related depression, that I am proof that disability really is misery. That the medical model is right.
I want to make this really easy to understand.
I’m not miserable because I’m in pain.
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.
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.
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.
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.