I asked Facebook if there was anything they wanted to know about me, my medicines, or any other aspect of my life. The answers, I told them, would appear in a blog post. I also posted the same to twitter. Below are the questions I received and my answers. If you have any questions, feel free to post them in the comments and I will do my best to answer.
What do you do to stay positive in the face of constant barrages from your body?
I find this question a little funny, mostly because I don’t think I do. Which is not to say that I’m negative in the face of those barrages either. It’s more that I’m used to dealing with this. I’m used to being in pain some days, and having my ankles swell, and having moments when I barely have the energy to get out of bed let alone do anything useful. I’m used to my spine seizing up because I’ve spend too much time on my feet. I’m used to being admitted regularly to the hospital. It’s not that I’m staying positive, it’s that I’m living my life despite everything that keeps happening to me.
There are moments when I’m positive and there are moments when I am overtaken by depression and fatalism. I work hard not to sink back into depression because I know how hard it is to drag myself back out. I also have a tendency to laugh at the bad things that happen to me. I don’t know when this started but it’s a defence mechanism. I laugh when I’m in pain. I laugh when I’m frustrated and tired. I try to find the jokes in the worst moments of my life. That doesn’t mean that I’m not overwhelmed from time to time or that there aren’t moments when I let myself complain and be miserable.
One thing that does help keep me from being overwhelmed however, one of the major things that could be said help me “stay positive” as much as that phrase may apply to me, is sharing what I am going through with others. Whether through Facebook statuses, ranting with friends, blogposts, or my book, knowing that I can share what is happening to me helps me feel not alone. It helps me feels like even though there’s no purpose to what is happening to me, that I can find meaning in it nonetheless.
Do you feel there is enough support out there for you? Online forms support groups. Information that doctors and nurses are informed about. Are there studies ongoing for treatment?
That depends on what you mean by support. I have a great online community that I get support from and with whom I can discuss symptoms, treatments, and so on. There are also a lot of great online forums available to people. It can sometimes be hard to find support groups that don’t give in to woo and/or religiosity. I recommend Skeptical Spoonies as a group that is both secular and evidence based.
As for information available to doctors and nurses, it’s out there. The bigger issue is whether they bother to look at it.
There are also lots of studies going on and if you are willing to pay for it, or know where to look, you can find most of them online. I’ve seen some good studies shared in r/crohn’sdisease for example.
As for whether there is overall enough support for me out there, the answer is No. It’s a struggle to survive and even more of one to thrive. I never know if I’m going to be able to afford my medication, especially now with Alyssa having graduated and currently in search of employment. It’s a struggle to get information about available services that are out there. When things get really bad some months, while I can and do ask friends for help, it’s not always available. I wish I didn’t have to go to them for financial support either.
How do I manage spoons to get something done like art or writing. Things I want to do but never seem to get around too. Like I guess do you do schedules? Or something? How do I time management?
To start with, I have to point out that since I’m on disability, I don’t have to deal with trying to find additional spoons on top of a full day of working on something else. Back when I was still working full time, I usually wrote blog posts on the weekends or when I was particularly motivated by anger over something.
What has helped me immensely has been less about scheduling time, and more about creating myself a space for me to work. My office is in many ways my sanctuary but it is also quite clearly set up to facilitate writing and art. I have my paints around me, my canvasses, notebooks, paper, pens, post-its, anything I might need while I work. I even have a drink fridge as well as my medicating set-up so I don’t have to worry about getting up to get either of those things. It doesn’t have to be a whole office though. At our old place it was really just a commandeered table. Sitting down somewhere where the express purpose is doing the thing.
Getting into the habit of writing is difficult, especially with my ADHD. I can find it difficult to get motivated sometimes. Like anything else it’s about integrating it into your daily routine to the point where it becomes just that: routine. What helped jump start that habit for me was Nanowrimo. It helped because it was a set deadline, which helps with the motivation, and because their website has a great stats tracker. I love watching those bars go up and seeing how many words I have left to write, how many words per day to reach my goal, etc. etc. Because I had this deadline, I was forced to write every single day, and eventually it became a little easier each day to sit down and write.
Schedules can be really helpful, like the office. Setting aside a specific time where you say: “I am going to do this” makes it easier to commit. Since you blocked out the time, you don’t have to worry about whether there is something else going on, etc. because you scheduled it.
It also helps me to do multiple things at once. For example, when I paint, I like to have a show playing in the background. This helps me stay entertained in the moments between being fully engaged by what I’m doing. Again though I’m ADHD so while having a show playing in the background works for me, it might be a distraction for others.
Finally, a really big help has been Word Wars: a game I picked up from a good friend where a few of us race against each other during a set amount of time and see who gets the most words written. The spirit of competition can sometimes really help with breaking through writers block. I also have a group of friends on Facebook with whom I discuss our various writing projects. Having someone to talk to helps a lot.
I know that you sometimes (not sure of how often) have to use a wheelchair. Which conditions contribute to this need for you? Do you feel like activities such as hiking are completely out of reach, or is that something that might be attainable in the future?
I’ve started using mobility assistive devices, like wheelchairs and motorized scooters (preferred actually) regularly when going to stores. All of my physical conditions actually contribute to it. In the most obvious case, my arthritis and my ankylosing spondylitis can cause be significant pain when I spend too much time walking or standing. Assistive devices make it possible for me to spend more time in the store itself and more time browsing, without having to worry about coming home in significant pain. Crohn’s and Fibro add to it by giving me limited energy, which is used up more rapidly through physical effort. Using an assistive device lets me conserve more spoons so I can get more done during the day.
If you asked me to go on a hike today I would have to day no. I went on a 30 minute walk in the dog park today and by the end of it, my spine was actively complaining. That said, I’m hoping to try and work some more endurance into my joints and spine this summer by spending more time in the dog park with my girls. Maybe it will help me lose a bit of weight, which is turn might make it easier for me to spend more time walking.
I am hoping that someday I will be able to handle it a bit more. I like forests a lot, and I miss being able to explore. I was never one for sports really, but I did enjoy occasionally getting to explore places like the Niagara Gorge trail. Eventually my hip will be replaced. It’s possible I may end up with more mobility after that and who knows, maybe hiking will once again be possible. Or maybe I’ll just figure out a way to bring a horse to ride while everyone else hikes. What I miss in particular though is bike riding. Maybe someday I will be able to afford a special bike that would make it possible for me to ride.
I don’t know what the future holds in this regard. Worst case, you and Alyssa can go hiking, and I’ll set up a campfire and a great picnic somewhere next to a nice lake or river.
I’d still like to read about you being trilingual. Did you grow up speaking all three? If not, how was learning a new language like? Do you code switch a lot?
For those who don’t know, I speak Polish, English, and French. I grew up speaking Polish at home. My parents were recent immigrants from Poland, and all their friends in Saskatchewan were also Polish. We even went to a Polish church. When I was old enough to start daycare and school, my parents sent me to an all-French school, which is where I learned French. I learned English from TV and from reading. I didn’t officially start learning English at school until grade five I think? And then in grade six I switched to an English school. Often I would speak French at school, Polish at home, church, zuchy (brownies), and Polish school, and English with friends and out in public.
I did get a chance to try learning another language when after grade 9 I spent a summer in Spain trying to learn Spanish. I picked up a lot more than my classmates, though I mostly kept that hidden until the final project. I don’t know why. It was an interesting experience, and I still want to learn more of it. What was different for me was experiencing for the first time a language I didn’t think in. Even though I never learned more than having a basic conversation, I still occasionally get thoughts in Spanish, and very occasionally dream in Spanish.
I used to code switch a lot more when I had more opportunities to speak French and Polish. I haven’t really spoken those two as much since moving out on my own. I have no one to talk to in Polish except my parents, and my French is rusty enough that I usually default to English out of ease. Also since Alyssa doesn’t speak either French or Polish, I don’t really get to practice at home. Some phrases I do switch with. Swearing for example. When I get really upset I will swear in Polish, French, English, and Spanish lol. Along the lines of “Come mierda, hostee, tabarnac, curvamac, god damn it, mother***er.”.
When I get drunk though, the one time that happened, or when I’m particularly tired, I default to Polish. Which tends to entertain Alyssa.
What’s actually interesting though is what it meant in terms of travel. Even when I went to Spain, I had enough familiarity with the language that I was able to navigate. I didn’t realize how true this was till I went to Austria with my family and suddenly found myself for the first time in a country where I had no clue what was going on. All I could say was please, thank you, and count to three. It was an interesting experience.
Do you have any birth marks?
I have a beauty mark on my left hand, which comes in very useful when I need to suddenly remember which way is left. I also have a beauty mark on my left breast, and a series of marks on my left thigh that almost make the big dipper. I’m one mark short. I have two light coloured beauty marks on my face, and more freckles than I can count across the rest of my body. I’m not completely covered in freckles but I have a lot of them.
What is your favorite body part that belongs to you?
My favourite body part? Hmmm…. I like my eyes, and I like my boobs. That last one might seem funny but they’re jiggly, they make a great pillow when I need them too, and I don’t know, they’re kind of fun to play with. I also like my feet. They’re really small and that entertains me for some reason.
What is your favorite body part to look at on another human being?
Ooo that’s hard because it really depends on the person. I love looking at people’s eyes, their backs, I love people’s stomachs, some people have really nice arms, others have awesome butts, some have attractive dicks, others have great breast, or lovely legs, or pretty feet. It really depends on the person.
If you could telepathically broadcast just ONE message (and that one message only) as needed at will to any human being, what would it be, in 30 seconds or less time?
You matter and you have value. You can change the world.
Should I shave half of my head?
Yes. If you want to. No, if you don’t.
Who’s your favorite artist (music, fine arts, whatever)?
I have a really hard time choosing favourites because I have eclectic tastes.
Music: I like classical music like Chopin, Mozart Beethoven, I like a variety of single songs from a variety of artists like Scissor Sisters, Beatles, etc. I don’t know. I don’t really have favourites of things.
Fine arts: again, I like a variety of stuff including the classics. I recommend people check out Ashly Grey and Sunflower Punk though, they both do great current work.
Do androids dream of electric sheep?
I think they dream of whatever the corresponding status symbol is. Or maybe freedom? Or killing all humans? Bigger question, do they count electric sheep before falling asleep?
Why *did* the chicken cross the road?
Probably food. Or porn. Or a particularly nice dust bathing hole?
Interesting fact, if a chicken is on the road and a car is coming towards it, the chicken will always run in the direction of its coop, even if that brings it in front of the car.
What hopes do you have for the future?
I hope that one day I will have several books written and published. I hope that one day I will be able to afford a plot of land where I can build a house for myself but also for my friends and chosen family. That we can have our community. I hope that one day we will be secure enough that we can start our family, adopt and raise a child together, Alyssa and I.
I hope that one day, I won’t spend the end of every month panicking about whether we have enough to cover all our expenses. That I will be able to know that I can comfortably afford my housing, my transportation, vet care for my pets, and maybe even an occasional vacation somewhere. I would like to be able to live and not just survive all the time.
I hope that in my own way, I can help change the world for the better. I know its conceited to think that I can have a significant impact, but I would settle for a small but noticeable one. I want to know that I matter, that my life mattered.
Is it really worth it to buy toilet paper in bulk?
As a Crohnie, I can’t say YES enough. I buy mine at Costco, a big pack of 40 rolls, and I always like to have a full one in reserve. I like to make sure I don’t just have toilet paper, but that I have toilet paper that won’t hurt when I’m flaring.
Would you clone yourself, if the technology were available?
I don’t know. As much as having an extra set of hands would be nice, a clone would be their own separate person who just happens to have the same genes as me. I might clone Alyssa though. The world needs more Alyssa.
Which body part would you be most likely to replace with a cyborg substitute?
My SPINE and my hips! No more pain in those joints would be amazing!! It might be nice to have a cyborg stomach, but my spine and my hips would be my first choice.
If Batman gained the powers of Superman, how would that effect his vigilante efforts in Gotham?
Most of my familiarity with Batman and Superman comes more from the Justice League cartoons than anything else. With that said, it’s really hard to say. It would depend on whether he had the powers from birth or whether he gained them later. From birth, then he would be an entirely different person and it’s hard to say what the effect would be. If he gained them later… I don’t know. I think he likes relying on his wits and his inventions, so if he suddenly had superman’s power, I think he wouldn’t know what to do with himself.
If Natasha Romanov were de facto leader of the Avengers, how would Civil War have played out differently?
*******CN for Spoilers. If you haven’t seen Civil War yet skip to the next question! *******
I was really surprised by Black Widow’s choice in the movie. I would have expected her to be much warier of subjecting herself to an authority like the UN. I would like to think that she would have been more inclined to listen to the Captain and also look at the evidence. I also think that if she had been the leader, she might have actually negotiated and fought for a better arrangement than what they had.
I don’t think she would have imprisoned Wanda. It’s hard to say really because I don’t know that I trust Iron Man to actually listen to a female leader, so the whole battle between him and Captain America may well still have happened. I could see Iron Man going rogue at that point.
I think that if she were the leader, that it’s very likely that the other movies would have been significantly different. I think she would have been subtler in some of her approaches, and maybe ended up with less obvious destruction.
What musical instrument would you want to learn to play (and that you don’t already play)?
I used to be a pretty good piano player, but I have it up in favour of spending more time on singing. I wish I still had the ability to play like I once did. It would be great to be able to accompany myself, so I could perform more. Maybe do some busking.
I would love to learn the guitar. I have really fond memories of sitting around a camp fire with my parents and their friends. My dad would break out his guitar and we would all sing around the fire. Oldies like the Beatles, Simon and Garfunkel, Polish folk music, all sorts of stuff. I would love to be able to do that with my friends and future family as well. I miss having that much music at home.
I also wouldn’t mind learning the violin eventually. I love the sound of violin playing the singing parts of classical music. I have fond memories of singing duets with a violinist at our church.
Do you call them graphic novels or comics?
I call stuff like Archie comics, and the short little booklets comics. I call Manga style books either Manga or graphic novels.
If you could control the weather (like Storm), what kind of weather would you prefer?
My favourite kind of weather is when it is pleasantly but not harshly sunny and it is warm enough for t-shirt and pants, with just enough bite for an occasional sweater. Not so hot you are sweating, but warm enough to sit outside on the balcony with a drink and my joint.
I also love thunderstorms, though they often mean my joints are going to ache. I also love sun showers, where it’s sunny but raining at the same time.
If I could control the weather, I would probably do what I could to make it the best weather for farming so that I could get lots of yummy local produce.
Would being an empath actually help one be a ship’s counselor?
I think it would, if only because I could see people trying to hide important feelings. Like people who would hide their depression or fear out of shame. Yes, they have to decide to talk about it themselves, but being an empath could at least point you in the right direction of what questions to ask.
In the same way, a counselor could feel when something was seriously off between two people and could figure out where abuse exists a lot faster because they could feel it.
In other ways it could hinder it though because it would become even more awkward if your patient hated you or had a crush on you. Though I suppose in those cases you could refer them to someone else if there is someone else.
I received more questions than I could answer in one post, so I will for sure be doing another one of these. If you have any questions for me, let me know.
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