When Society Echoes your Troll Brain

September 7, 2016 Ania Onion Bulaableism, Depression, troll brain3 Comments

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.

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Bathroom Matters

August 29, 2016 Ania Onion Bulabathroom, Bathroom Access, Crohn's, Gotta Go1 Comment

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.

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How to Talk to your Doctor about Digestive Issues

August 24, 2016August 24, 2016 Ania Onion BulaCrohn's, Digestive Issues, Doctors, how to, IBS1 Comment

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.

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No More Unicorn Blood

June 18, 2016 Ania Onion Bula4 Comments

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.

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That Doggy in the Window

May 24, 2016October 24, 2016 Ania Onion Bulabusybodies, Crohn's, Disability, dogs, windows6 Comments

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.

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If You Have Crohn’s Why Are You Fat?

April 28, 2016April 26, 2016 Ania Onion Bula2 Comments

CN: Discussions of Weight and Medical Conditions

Every once in a while, someone will stray far enough from the trail of courtesy to ask me why I am overweight. Crohn’s is known to cause extreme weight loss, so my weight must be a sign that I’m not actually as sick as I say I am. This is part of the danger that exists when people who have no experience with medicine, laymen, pretend to be medical practitioners or to have knowledge of health. Their understanding of various illnesses is superficial at best.

It is true that Crohn’s causes weight loss. It does so in large part because the patient loses the ability to digest food. This happens because the intestines, which are responsible for a significant portion of human digestion, are so inflamed and ulcerated that nutrients are unable to pass through into the bloodstream.

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Guppies and Children

April 20, 2016 Ania Onion Bulaacceptance, breeding, children, fertility, guppies, loss1 Comment

I breed guppies.

It’s not really that hard, put some guppies together in a tank, and you will have fry usually before the week is out. The trick is in keeping the parents from eating them, and then keeping them well fed at the same time, then changing them into a new tank and raising them until they are big enough to sell.

I do it for a variety of reasons.

Having fish tanks in my office is very soothing. It helps me relax and creates a great atmosphere for writing. The sound of running water, the swirl of colours as they swim, the pleasant rise of air bubbles.

I can re-sell the babies for store credit at our pet store, which helps us offset the cost of keeping our menagerie.

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10 Things to Bring with you to the ER

April 11, 2016 Ania Onion Bula12 Comments

It’s the evening and you feel like crap. You know the night is going to end with you going to the ER, but still you delay. Depending on where you live, a trip to the ER can mean waiting 2 hours or waiting 12. Not to mention, depending on why you are going in, you may even get admitted!

So now, in an effort to delay the inevitable, you try to decide what you should bring to the hospital: the practical, the necessary, and the helpful.

Well worry not my friend, here is a comprehensive list of everything you need to survive your upcoming trip to the hospital.

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I almost died last week.

February 19, 2016September 1, 2018 Ania Onion Bulaaddiction fear, dilaudid, Doctors, Medicine, withdrawalLeave a comment

CN: Descriptions of withdrawal, hospital admission, medical symptoms and needles.

It wasn’t an accident, or even a sudden onset of something like appendicitis. No, my brush with death came about as a result of fear. Specifically, other people’s fear. Fear of addiction, fear of being wrong, and fear of being fooled.

You see, the week before I was admitted with Crohn’s. I went to an appointment with my Gastroenterologist and he sent me straight to the ER. I was admitted, and put on high doses of Dilaudid, after the usual adjusting games where they started me on 1mg every 6 hours, before finally conceding that 2 mg every 4 was what was needed. In addition to that, I had Gravol and Benadryl to control the various side effects of the opiate.

I spent the week essentially zonked out after several weeks of increasing pain and nausea, and a trip to the ER every 2 weeks since Christmas. My admission came on the heels of two weeks of being sick with a sore throat, which kept me not just from being able to take my Remicade, but my medical marijuana as well. My throat hurt too much to handle the irritation from the smoke.

My crohn’s had gone into overdrive. I wasn’t digesting, I was in pain, and I needed help.

The reason the doctors agreed to finally treat my pain properly is that I told them, that once I got home I wouldn’t be taking dilaudid anymore.

Not one doctor stopped thinking about their fear of addiction long enough to hear what I was saying and remember their training. Continue reading “I almost died last week.” →