Last Chance to Stretch the Twisted Ladle Cookbook

November 18, 2016 Ania Onion Bulacookbook, Crohns, crohnsdisease, recipesLeave a comment

Hi Readers!

Ania here.

It’s the last day of my IndieGoGo for the cookbook I am writing. I’ve been working hard on it already and have quite a bit already written. I’m fundraising to give me a chance to make the cookbook better by being able to exactly measure proportions for each recipe and take pictures of the process.

I’ve made my base goal, which is awesome! I’m hoping to be able to reach the stretch goals, in particular, the one related to the Video Cookbook.

I’ve been trying to make videos for a while now and have done some work towards that, however, I don’t really have the right equipment. My camera is pretty old, and so the video quality is pretty low. It is nearly impossible for me to be able to zoom in and get the detail necessary to really show how to do things.

If you have a chance, consider donating to my fundraiser. $10 gets you a copy of the eventual ebook, while higher donations get you access to secret early release recipes, and the chance to have a recipe named after you.

If you cannot donate, please share my fundraiser on Facebook or Twitter. Thank you so much.

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11 ways ELITE DAILY used ableism to make a point about relationships.

December 3, 2014 Ania Onion Bulaableism, Crohns, dating advice, Disability, Social JusticeLeave a comment

I understand the impulse towards showing your best self at the start of any relationship. I do and have done it as well. You want the other person to like you and you are terrified that if they find out how flawed you really are, that they won’t.

So you put on make-up and wear your hair down. Maybe you wear a skirt, or that itchy shirt that you look amazing in. You might show a little more interest in something than you otherwise would. You don’t lie, not at all; you just never realized how interesting this actually was.

It is human nature and it is fair to mock it. But then lists like this one come out that point out how the acceptance of “gross” things that mark a committed relationship. I look at that list and the first thing I think is: How nice it must be to be abled.

I am going to borrow the list and instead talk about the ways in which it is ableist as fuck. And So my wonderful readers:

11 ways ELITE DAILY used ableism to make a point about relationships.
((The following list is a direct quote from this linked article and does not belong to me. What does belong to me are the comments between the number.))

“There’s no demanding need to shave.”

Ok so mandatory feminist statement: There is NEVER a demanding need to shave. But let’s talk for now about some of us who enjoy smooth legs, I among them. My decision not to shave has nothing to do with a lack of caring, but rather a decision not to inflict pain on myself.

I have a permanently damaged hip. I cannot bend in a way that makes shaving comfortable. I literally cannot reach certain parts of the leg. This also created a much bigger risk of cutting myself. So I don’t shave except as an occasional treat for Alyssa or myself. This decision had nothing to do with the quality of our relationship. Actually the first time Alyssa and I hooked up, my legs were hairy with several days growth.

“You fart in front of each other.”

This presumes control of bodily function. This presumes that everyone gets to decide if and when they fart. This presumes so much, that many of us don’t get to decide.

“Poop is discussed in any capacity.”

I wish I got to decide, I didn’t. Having an accident in the middle of a midterm made that decision for me. What is worse, is that as early as that happened in our relationship, that wasn’t even the first time the subject came up. People with digestive issues, people with chronic diseases, people who have had bowel resections or live with colostomy bags, people who have had their lower bodies paralysed in such a way as to lower their ability to control their bowel movements, all of these people like me might not get to decide when we start discussing poop.

“You let him pee in the shower when you shower together.”

This presumes that he has control over his urine.

“Morning breath doesn’t gross you out.”

During crohn’s flare ups, I have to make the decision whether it is better to brush my teeth and throw up or whether I shouldn’t brush and as a result not spend my morning throwing up bile. Morning breath is the least of my concerns.

“Sicknesses don’t make kissing off-limits.”

I am immunosuppressed. My partner not kissing me when they are sick has nothing to do with how much I love them or how much they love me. That decision is based on the fact that a two day cold for them could be two weeks of misery for me. It could mean having to postpone my Crohn’s medicine and adding a flare up to things that are wrong with me. Just now I had the flu that lasted for two months. Near the end I couldn’t tell whether it was the virus causing me to throw up or my Crohn’s.

But let’s ignore contagious sickness for a minute, and focus on other definitions of sickness such as say vomiting. I can’t tell when I first threw up in public in front of Alyssa. I do remember the warmth of the hand massaging my back while the other held back my hair. I do remember that we hadn’t been dating that long that the kiss that followed was in any way required.

“Weight gain isn’t a big deal.”

Weight has been my cross to bear for as long as I can remember, and now more than ever it is intimately intertwined with my disabilities. My weight gain, my diet, my exercise are all things that keep me up at night. The implication that it should be a big deal or affect the intimacy of my relationship keeps me up even more. The social perception that fat people like me are not entitled to love is such a pervasive bit of fat shaming that it has formed our whole script surrounding relationships. If you don’t think so, I dare you to watch every episode where a man has to prove his love for his wife by realizing he loves her enough to find her sexy when she gains weight.

“Despite all of this, you actually still find your significant other sexy.”

This is the one that cinches it all. That underlines the problem. Everything on this list is considered gross and unsexy, and all of it can be related to disability. I haven’t listed everything here so as not to be redundant and not because there is one thing on this list that isn’t in some way ableist (and also possibly cissexist, transmisogynistic, sexist, classist, and so forth). These things are considered gross, as are the people who do them.

For many of us with disabilities, these things are a major part of our lives. In other words, according to this list, I am gross. I am unworthy of love. This is just yet another perpetuation of the social idea that people with disabilities are sexless and loveless. It is a lie, a damned lie, and damaging to many of us.

On the day that I received my diagnosis of arthritis, I cried. Nothing major had happened yet. It hadn’t really factored into my life at all yet except as an occasional twinge of pain which pills took care of. I had no idea what was coming. I had no idea that by that time the next year I would be in a wheelchair after several months of walking with a cane. For all intents and purposes, the diagnosis was a name for something that hasn’t really happened yet. It was nothing! And yet, I cried. Why? Because I was convinced that it was this news that would doom me to dying a virgin. That I would never marry, never find love, all because I had a diagnosis that others might find scary.

I wasn’t disabled yet and I already knew what the social script had in mind for me.

And lists like this don’t help. Because they just serve as a reminder to all of us, that us disabled folk better not get too uppity by thinking that we are entitled to being treated like human beings.

Our Concerns Won't Be Flushed Away

November 21, 2014September 1, 2018 Ania Onion Bulabathroom, Crohns, Disability4 Comments

Content Warning: If you have a problem with discussions and descriptions of bodily functions, this post is not for you. you have been warned.

I’ve recently joined reddit, and have spent some time on the r/crohnsdisease. Among one of the articles was this one about a bathroom bill that didn’t pass.

The bill would have made it required that businesses allow Crohn’s and other IBD patients access to washrooms, even those that are for employees only. The bill didn’t pass and this author takes this opportunity to mock the idea of its existence and follow it up with an anecdote about how a woman tricked a business into using the restroom in order to steal something.

In the author’s mind, this anecdote is proof enough that the bill was useless and would not benefit anyone. The author “sympathizes” with people with intestinal and digestive disorders, and recommends compassion on the part of the businesses, but doesn’t see the need for such a bill.

For people without these disorders, crohn’s (which I shall now unfairly use to represent all IBDs) doesn’t seem like such a big deal. I’ve even had people quip that everyone gets stomach aches and that loose bowels really aren’t a big deal. When these people imagine what it must be like, most have nothing to compare it to other than that slight feeling of urgency you get when you’ve held it for too long.

I am about to share something very personal. The feeling of urgency when you have a flare up isn’t like that feeling of “Ooo I really have to go” but is more like “I need a bathroom right stat fucking now!!!” With Crohn’s you don’t always get a lot of warning before the need to go to the bathroom is completely overwhelming. You have maybe 5 minutes to find a washroom. If you don’t get one in time, too bad. You have no control. Your body is your enemy as you do what you can to try and save yourself from embarrassment.

When I was first diagnosed, the actual bathroom aspects of the disease were not the worst. The constant nausea that never went away was. I began vomiting in public so often, that I started telling people I have morning sickness to avoid the ackwardness that was explaining to someone what was going on.

I remember one situation in particular where I started crossing a street and had to run back so that I could safely fall on my knees and bring up my breakfast. It was a choice between keeping going and end up tying up traffic or getting hit by a car, or running back to safety. As I knelt there trying to discretely throw up behind a stone, a woman began panicking asking me if I needed an ambulance. The last thing I wanted was a scene, but this woman was among the first people to ever show concern and I couldn’t scoff at that. But how to explain to someone who is freaking out that this is a normal part of your life? That you have a disease that sometimes makes you throw up in public without any control? How do you then convince that woman that no, you don’t need a hospital? “I have morning sickness” I answered.

I also now have had the pleasure of vomiting udon noodles all over the department of National defense. No it wasn’t a political statement, I just couldn’t help myself.

As I did research into this condition that I now knew I had, I found frequent recommendations suggesting you travel everywhere with an extra pair of underwear.

Eventually I figured out why. As my nausea came under control, I noticed the bathroom symptoms. I was lucky and managed to avoid an incident for quite some time. I was in school, and there are always plenty of washrooms on campus. This made my first “accident” that much more traumatic. You see, it happened during a midterm of a class I couldn’t stand. I was already feeling sick, when suddenly the urge hit. I asked for permission to go to the washroom, and ran to where the nearest one was. Unfortunately it was out of order. I ran from one to the next, but the university had decided to renovate all the washrooms in the building at the same time. I finally had to run to the building next door to find one. I didn’t make it. Just stop and think about that for a second. Think about being an adult and not being able to control your bowels. Imagine the embarrassment as you try and clean yourself up in the bathroom. Of praying no one notices as you try and wash your underwear in the sink so that you can put it in your bag. Of having to trudge back to class feeling unclean, wondering if everyone can smell it on you. Of having to go up to your teacher and explain that you are unable to finish writing the midterm. That fear of hoping he understands and doesn’t just fail you on the spot. The horror of having to take the bus back to your apartment so that you can shower. Or the choice of going to your boyfriend’s place, who lives within walking distance to the school to ask if you can use his shower and his laundry machine. Wondering if he will ever be able to look at you and think your sexy ever again, or if every future encounter will be tainted with the subtle odor of “unclean”.

I was lucky, my boyfriend is a wonderful man. He hugged me, wrapped me up in his robe so that I could go shower, and washed my clothes for me. When I got out, he spent the next couple hours cuddling me, and loaded up a funny movie to make me feel better. Not a lot of guys would have reacted that way. For many, the fear of dealing with someone with that kind of disability can be too much.

While that was the first time it wasn’t the last. One night, my apartment building has a 2am fire alarm. In the hustle of trying to pack up our dog and the roommate’s cat, I didn’t stop to use the washroom. When we reached downstairs, the urge hit. I went to the little mall that had the only businesses in the nearby area. The only place left open was a Tim Hortons. I begged the drive through to let me use the washroom. I pleaded, explaining that I had this condition and that it was an emergency. The answer was no. I had to stand around in my mess for over an hour, while I waited for the firemen to clear the building. By the time I managed to shower, my leg had developed a painful rash. It would have been a 5 minute inconvenience for the restaurant. I would even have bought something to make up for it. But they didn’t, and I suffered.

I am not unique in having had these experiences. Despite the high level of embarrassment and inconvenience, this isn’t even the worst part of this illness. The lack of control over your body is bad, but the pain, the nausea can be infinitely worse.

During the worst of my flares, I remember laying on the bathroom floor shivering because my body didn’t have enough energy to keep itself warm, and I didn’t have enough to stand up. I lay there because I knew that in just a few minutes I would be throwing up bile once more. I remember avoiding brushing my teeth for some time, because the motion had me leaning over the sink coughing up bile. I remember the pain of using mouthwash because my mouth was filled with canker sores. I remember spending hours at the hospital emergency room, waiting to get yet another IV with fluids, just to be sent home without an answer as to what was going on. This happened about once every two weeks. I remember the months of barely leaving the house, of napping constantly, because my energy just wasn’t there. I remember bending over in pain, as once again I was seized with excruciating pain. I remember forcing myself to eat, wondering if this time, I would manage to keep it down. Of lying perfectly still, trying hard to force my body to absorb the nutrients I had eaten. Those moments of stillness, I remember wondering if I would survive this. I remember wondering if the rest of my life would be spent not being able to eat or digest. Wondering how much weight I would have to lose before I was admitted permanently. All of this wasn’t constant. It was interspersed between brief moments of normalcy that made it seem at the same moment so much worse but also better than it was. It took a long time before I realized just how bad things were. In hindsight, I look at what was going on and wonder why I didn’t just give up?

Not everyone with Crohn’s feels comfortable talking about it. It can be difficult. What we go through is so personal, the details about what it is like can be so embarrassing, that it is not surprising that most of us would rather not talk about it. I need to talk about it. I need to because it is less painful than this author’s assumptions about what having Crohn’s is like. Because maybe if I talk about it, next time that Tim Hortons will open its doors and let me in. Because maybe someone reading this will take pity on someone else and give them access to the bathroom.

I am not alone out there. My experiences are not unique and they are not even rare or the worst of what people have gone through.

This author, rather than recommending compassion to others, should stop and find it in themselves first.

YSI Excerpt: Disability and Mental Health

November 20, 2014 Ania Onion BulaCrohns, Depression, Disability, Mental Health2 Comments

When struggling with pain, constant fatigue, nausea, malnutrition, loneliness, and a variety of other symptoms, it is not hard to believe that it is common for people dealing with chronic illness and disability to be vulnerable to depression. Whether this is because at times everything becomes overwhelming, due to circumstances influenced or worsened by your condition, or because of deficiency in necessary vitamins and chemicals, it doesn’t ultimately matter. The result is the same: depression.

With all the concern about managing your apparently more serious chronic symptoms, it can be tempting to simply ignore the mental health concerns. It makes sense that you are depressed. Who wouldn’t be if they lived like you? You already have all these other drugs, do you really mean anti-depressants. It’s not like you are going to hurt yourself, you don’t have the energy. And even if you did, would anyone care? You would stop being a burden. No one would have to worry about you anymore. It would stop the pain…

Just like that the depression becomes severe and cause for concern. At the worst moments during a flare, you might be stuck indoors for long periods of time alone. You might be in a hospital bed, your only human interaction the occasional visitor and the nurses, not to mention the person who comes to take your blood every morning. Regardless of whether you see a lot of people or not, you are stuck in one place for a long time. Imagine having to spend your entire day in a small, somewhat uncomfortable bed. The only time you get up is to go to the bathroom, and to do that you have to push an IV pole that is attached to your arm.

Even if you aren’t hospitalized, the exhaustion can create the same results at home. After a while it starts to drain you even further. Your life starts to stretch out before you, and endless miasma of pain and boredom. You don’t even have the energy to watch TV. You just want to lie in bed, and wish you could get up the energy to have a shower.

What can further complicate the situation is that symptoms of many chronic conditions and depression overlap: fatigue, difficulty falling asleep, lack of energy, pain, and so forth. It can be difficult to tell when you are dealing with one thing or another. Are you unable to get motivated because your Crohn’s kept you up all night, or because your depression is making it hard to care about anything? Is the exhaustion mental or physical? Is my joint pain a physical response to inflammation or to psychological pain? Moreover, sometimes physical pain can cause the psychological pain. It all intertwines until it is almost impossible to tell.

Despite the frequent connection between disabilities, illnesses, and anxiety/depressive disorders, the medical community still has a hard time understanding the correlation. Frequently depression, anxiety, or any psychological diagnosis is treated very negatively. Even if you have a documented disorder that you are getting treated for, a diagnosis of any psychological condition could mean a decrease in the quality of care. Suddenly, every trip to the doctor or ER becomes suspect. Some doctors will wonder if you are faking your symptoms in order to score drugs, while others will assume you are over reacting or confusing mental symptoms with physical ones. It creates a situation where there is an incentive for people with chronic conditions not to seek help for their related psychological conditions.

I have seen this manifest personally. The usual procedure when I come into the hospital is to be given an anti-nausea agent and pain meds. Regardless of whether they think I need to be admitted or not, the usual assumption is that if the pain is bad enough for me to feel the need to come in, then controlling the pain is a concern. On one such occasion, I noticed a slight change in how I was treated. Usually there is an effort to reduce my pain symptoms as quickly as possible. This time around, it seemed that there was a hesitancy to do anything about it. I was offered some anti-nausea medication, but not once was there even a mention of anything to do about the pain.

When the doctor came in to see me, the first questions were not about why I was there, but clarifications about my last visit to the hospital being labeled “psychiatric”. I was confused, having never come to the hospital for anything mental health related. I wracked my brain for every time I had been to the hospital in the last few months: visit with my gastroenterologist, visit with my rheumatologist, weight management clinic…. Bingo. It seems that the clinic that my GI had sent me to to see about getting help in losing weight with the difficulty of Crohn’s and arthritis, registered as a psychiatric visit on my hospital file. In combination with my medication for anxiety and ADHD, they has assumed that I had come in to be treated for something else. The pallor of having sought help for a mental health problem changed how they viewed my physical health. I never was offered anything for pain, and I was sent home without any satisfactory aid for what was wrong with me. For the first time I was given the answer that it was “just Crohn’s”. A condition that had such a profound impact on my life was suddenly seen as no big deal because of one tick on my chart that might suggest that I also had depression. That the Crohn’s might be the cause of the depression was never considered. That a person can have two things wrong with them and have them be equally valid and serious was never considered. No clearly, despite the fact that I had a documented condition, depression, anxiety, or any other form of mental health disorder had to mean that the pain was all in my head.