A few years ago my parents took my sister and me to Poland to celebrate their 25th wedding anniversary. We flew first to Austria where we spent a few days exploring Vienna. It was an interesting trip for me, being the first time travelling to a country where I didn’t have at least a very basic grasp of the language.
In the past I had gone on exchange to live in France, but I spoke French. My parents had taken us to Cuba, and I had an exchange in Spain, and while my Spanish was limited, I knew enough to be able to ask basic questions like where is the bathroom, and how much is it. German however, is completely outside my familiarity, and doesn’t really share many commonalities with any of the other languages I speak.
It was a strange experience, having to rely completely on someone else to translate for me. I had never felt that helpless before and it meant a lot less independence than I am used to while travelling.
Our first night there, we went on a hunt for cheesecake. My father, during my parents’ courtship, had had to go to Vienna for some time. While there, he promised that someday he would take my mother to Vienna and they would have cheesecake together. Afterwards we took a moment to look at the streets of the old city at night.
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.
It’s been a bit of a rough month. For those following along at home, I went to New York at the end of July to help a friend who was dealing with criminal levels of negligence from her doctors and therapists, which was interfering with her ability to put her life back together. Returning back home, I had a plan for August, to make back some of the money we had lost to the trip by working on promoting my book and art, and looking into additional income streams.
Coming home, I got to work doing just that, only to be met with several unexpected expenses: a flat tire, an unexpected credit card fee that led to a whole bunch of additional charges, and so forth and so forth. At the beginning of summer, I had been hoping to use some of our money to be able to can some of the local produce we get here in Ottawa. Help us eat healthier and more local over the upcoming winter. Instead, we ended up in a situation where we couldn’t really do groceries and so are working off the store of food that we do our best to stockpile when we can.
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.
It has been a year since my daughter and I left the shelter after five years of homelessness.
I cannot believe it’s only been one year. We got used to things pretty quickly which surprised me. After all, I was so used to being treated like an animal, being carted off to different shelters, nothing more than a number to the State, that I thought not having to deal with shelter life would be a major adjustment.
Since I already wrote about the differences between shelter and apartment living, I’d like to make this post a thank you letter to everyone who helped me get in here and continues to help my daughter and I. Some are named and others I’ve used initials for because they’ve asked/I don’t know how they’d feel about a public shout out.
First I’d like to thank Ania Bula for helping me with creating and sharing my fundraiser.
I was hesitant to make one at first because I was afraid no one would help. I was afraid poor shamers would question why I was asking for money. I’ve seen it so many times before. Angie and Ania helped convince me and they then helped share the hell out of that link.
I’d like to thank my online group of women and NB friends for always listening to me whine and complain and cry about everything in my life. Why you all haven’t gotten sick of me is a mystery.
Many thanks to Sally S. who drove down to the City when I left one of the many shelters (I was being transferred to another) and helped me move my things. If not for that, the shelter would have thrown away everything which would have meant that when I finally moved into this apartment my daughter and I would have had to start over.
Which brings me to thanking KH, ALS, JF, IDT, SG, YR and many others for the lovely housewarming gifts they sent us.
I’d like to thank all of these wonderful people and their friends (strangers to me) for sharing my fundraiser and story. If not for them, I wouldn’t have been able to raise the money to pay off the apartment fees. We were able to come up with the money in about a day!
I was honestly flabbergasted. I could not believe the outpouring of support we received and continue to receive. I feel so lucky to have such wonderful people in my life. People who love my daughter. Our first Christmas here, some friends sent us gifts and my daughter was over the moon.
My friends helped keep me sane while I was dealing with getting the apartment ready. They offered their support, ideas and advice.
I’d like to thank several of my artist friends for encouraging me to keep up with my own art. So, thank you to the Artful Scientist, Ania (once again!), AG, CW, APV for seeing the beauty in what I do and telling me. As you know, sometimes we’re our own biggest and harshest critics.
To my fellow single mom friends, thank you for reminding me I’m not alone. Thank you for staying up with me when I was worried I was somehow messing up my kid’s life.
Finally, I’d like to thank my mami for always helping any way she can. She’s the Sophia to my Dorothy and I’m proud to be her daughter. She’s a great mom. I love you, mami.
And special thanks to my daughter TJ. She has been such a trooper. She’s gone through so much in her short life but she always manages to stay bright and bubbly. I love that about her. She’s my favorite person and I’m lucky to have her call me “mom”.
All of these people (and so many others I didn’t mentioned becuase they’ve helped in so many different ways, it’ll be a way longer post) are always there to remind me to take it easy. To be gentle with myself, reminding me I’m doing the best I can as a person, mom and friend.
Thank you all so much again. I’ll never feel like I can thank you all enough.
It’s been 13 years since I left Puerto Rico with my mom and brother. It’s also been 13 years since the Blackout of 2003.
We were out shopping when all the stores went dark. At first people thought it was just on that block. Then we found out all of Southern Boulevard had lost power. We kept walking and found the train station, that’s when we found out there was a blackout so we could not get on the train. A few people were worried it was an act of terror. After all , 9/11 had happened less than two years prior.
Honestly though, my brother and I did not understand the problem. The light was constantly being “taken away” in Puerto Rico. The blackout was sorta welcomed to us because it made us feel at home. Growing up, it was a very common thing to yell, “se llevaron la luz!” out the window to alert the other neighbors that the power had been cut off the in the neighborhood for a while. We did the same when they’d cut the water supply.”They” being the Autoridad de Energia Electrica de PR and Acueductos y Alcantarillados. We’d go days without both so we had no problem dealing with the blackout.
Recently I’ve been thinking how much things change. When we moved to NYC I thought I’d never get used to all the noise and people. I’d never get used to swaying of the trains or the bumpy rides on buses. Everything was bright, loud and steel.
A childhood friend is visitng. They’ve never been to NYC. The bus and train ride home was hilarious. It reminded me so much of when I get here. My friend was looking at everything with such wide-eyed amazement. And I was telling them about the City and the “rules”, how New Yorkers are. I told them they must have a NYC pizza because we are the best at it. They were asking so many questions and I was able to answer them.
I miss the coqui’s song. I miss how starry the sky is at night in El Campo. I miss the beaches.
I’ve never really felt at home in the States. Visiting Puerto Rico is always great but then I’m reminded of all the religious motivated bigotry on the Island; all the machismo etc. So, I feel too Latina for the States and too Americana for Puerto Rico.
But I’m starting to realize I have the best of both worlds.
I get to have New York City’s big slices of pizza and my friend brought me Puerto Rican candy. So, it’s a win-win.
A man messaged me on a dating site to let me know how much my feminism was a “dick killer”. How as soon as he saw my picture he lost interest and would rather “fuck a hole in the wall”. How he thought I was interesting until he saw “feminist”, how he thought I was a “tr*nny”. And again reminded me how much of a “dick killer” I am.
Oh how will I ever go on? I have hurt this man. He was so confused. How dare my uninteresting face made him look at my interesting profile until he saw that dreaded F word.
I know this man’s pain. Many times I have walked into baseball stadiums to loudly tell every one how much I hate that game.
I once bought a cheeseburger and then angrily demanded my money back because of how much I hate them.
This poor man.
How will I ever go on knowing the hurt I caused this man? How will I ever go on knowing he won’t fuck me?
Tis truly a sad day him.
Let us all mourn this man’s dick’s death. RIP, dick. RIP.
As some of you may remember, I talked about the possibility of going to New York, to help a single mom friend who had hurt herself. I was doing a fundraiser to be able to afford to go (I could still use some donations to help recover from the financial strain. And also to cover unexpected expenses).
Well, earlier in July, I finally went. Many of you may be wondering why it was so urgent. While it is true that an injured ankle makes things hard to deal with, especially for a single mom with an active kid, but it doesn’t seem like the type of thing to really justify spending so much money to go help out. Heck, taking a cab around would be cheaper.
The truth is that out of concern for privacy and at the request of my friend, I left out a lot of details. While it is true that she did injure herself, and that a portion of my help was to make things easier on her for a few days, the truth of the matter is that I was going there to stand witness and see what I could do to help her with a much more complicated issue.After my visit, my friend gave me permission to release some of the information on my blog.
You see, my friend was a victim of domestic abuse. Severe domestic abuse. Her partner hit her, sexually assaulted her, the details of which are so unbelievably horrible, that the court had a hard time accepting the truth of it. That was six years ago, and this man will likely never see the inside of a cell for what he did. My friend however, has had her life, and that of her child, completely hijacked.
I think a lot about the characters on Steven Universe. Everyone on the show is damaged in some way and the home world gems are no exception.
I recognize a lot of myself in Peridot. Growing up, she probably often felt like she wasn’t enough. She follows the rules exactly, hoping it will earn her the recognition of those in authority. The authoritarian system on homeworld suggests that she was probably told that as long as she follows orders perfectly, as long as she serves the diamonds just right, that she will earn recognition. She will find fulfilment as a gem. She does everything as she is told, does everything she can to fit in, even though deep down she knows she doesn’t. That something makes her different from everyone around her, even if she doesn’t know what it is.
Other people see her usefulness to them, use her, and then discard her. Because of this, and because of other ways she feels deficient – like her disability (namely her inability to change her shape) – she feels worthless and craves approval. She is hoping that if she is just obedient enough. Follows just the right script, is just useful enough, that she will get noticed. If she gets noticed, she will know that she matters.
My Book Young, Sick, and Invisible has it’s first reviews on Amazon.com. I am so excited to hear from people who have read it, and the people who have contacted me to share their stories.
If you’ve had the chance to read the book, please let me know what you thought. I would love to hear from you!.
“I am a person with a chronic illness that has left me disabled. Ania’s book not only perfectly described the facets of living with disability, chronic pain, and chronic illness, she also touched on how it can be for friends and loved ones of such a person. She exquisitely describes in terms anyone can understand – whether they are a patient, friend or loved one of a patient, or just a regular person wanting to learn about the struggles of those of us who are ill. This book was devoured in days and something I feel everyone should read, especially if you know a person with chronic pain, a chronic illness, and/or a disability.” – Kacee L Cole