Recently, there was a street fair here in town. They shut down one of the main streets, and set up booths, vendors, games and stores all the way down the road. My hubby and I actually ended up going for at least an hour on three different days. He knows a lot of people, and a lot of people wanted to stop and talk to him.
There were probably at least 12 different food booths. When we got hungry on the first day, I told my husband he could eat wherever he wanted, I would surely find something.
I started out at the sushi restaurant. Except that I'm realizing I can't really eat sushi. I used to just get crab rolls, but I found out recently they use imitation crab, and the one package of imitation crap that I could check the ingredients on contained wheat flour. Most of the rolls are various types of tempura, which just plain doesn't work for me, and then anything cooked, like squid, doesn't work because it may be contaminated while cooking. That leaves the salmon rolls, and I'm possibly allergic to salmon (*I've never had enough salmon to determine if I am allergic, but my doctor told me to just avoid it anyways). And all that leaves is veggie rolls. Which are good, I guess, but not filling or satisfying.
On the second day there, I just gave up on sushi, and hunted through the other food booths. The one that is famous for fried chicken was also selling taco in a bag. I asked to see the bag of chips they use, and happily they were zesty cheese Dorritos that also say Gluten-free on the back, so then I asked the fellow what they add to it. The expected sour cream, salsa, cheese, tomatoes, lettuce, and beef. So I asked about the beef. At that point, the guy asked what I was looking for. I told him wheat or gluten, so he checked the beef, and then asked me if soy protein was okay. Hooray!! I can eat the taco in a bag!!
I then had three tacos in bags over the next two days. I couldn't find anything else that I could eat, besides lemonade, frozen chocolate-dipped bananas, and shaved ice.
The other celiac moment for me was when my husband saw a couple that he knew and took me over to introduce them. The fellow popped a mini donut in his mouth, brushed off his hand, and stuck it out to shake my hand. I apologized, and told him I couldn't shake his hand. I then, of course, had to explain and he was completely flabbergasted that shaking his hand could be a risk for me. But at the moment, I was drinking a smoothie. I kept stirring the drink with the straw, and I explained that if I shook his hand and then touched my straw, I could easily get sick. I felt like such a jerk for not shaking his hand, but I just saw the mini donuts in one hand and freaked out.
I'd like to forget about my celiac, and I'd love to pretend the whole world eats the same food as I do, but events like street fairs remind me how unusual I am, and how difficult my dietary needs are.
Showing posts with label Celiacs. Show all posts
Showing posts with label Celiacs. Show all posts
Friday, 11 July 2014
Monday, 30 June 2014
Celiacs at Weddings, the second
My eldest sister married the man of her dreams this weekend!
Yes, my brother got married a mere six weeks ago, but hey, now my family is done with weddings for a few years!
If you remember the last wedding, my sister-in-law made sure the cake was gluten-free for me (she served cupcakes for everyone else), and one of the teenage boys there turned out to also be a celiac and he was really happy about it.
Well, if my sister-in-law is thinking of me, I can promise you that my own sister is thinking of me! Most of the meal was gluten-free as well (except for the buns!). As for the cake, it had four layers, and each layer was a different flavour. The smallest layer was a gluten-free white cake.
When it was time to serve the cake, my mother, two of the bridesmaids, and I each grabbed a layer, a knife and a cookie lifter and we each served out the different flavours.
I, of course, grabbed the gluten-free layer. As everyone lined up, they'd ask me what each flavour was, and I'd recite "Gluten-free white cake, lemon cake, carrot cake, orange-chocolate marble" and everyone would immediately file past me. A few moms of kids took the white cake because their kids wouldn't like the complicated flavours, but most people turned their nose up at gluten-free.
Except for one woman who got in line and asked "Which one was gluten-free?" And I recognized that face. It's the "Wait, I can have cake?!" face. I handed her a slice and asked if she was a celiac. She was. So I also pointed out the table of sugar cookies that I made, and told her they were safe as well. I didn't talk to her again after that, but I met her son who was a bit younger than I, and he expressed how happy, grateful and excited she was that she could have some cake. He passed on: "I would never wish this on anybody, but I am so happy the bride's sister has celiac, too!"
I think that sums up how I feel too. I would never wish this on anyone, but it makes me glad when I have more options, or when I have someone who really understands how I feel.
Yes, my brother got married a mere six weeks ago, but hey, now my family is done with weddings for a few years!
If you remember the last wedding, my sister-in-law made sure the cake was gluten-free for me (she served cupcakes for everyone else), and one of the teenage boys there turned out to also be a celiac and he was really happy about it.
Well, if my sister-in-law is thinking of me, I can promise you that my own sister is thinking of me! Most of the meal was gluten-free as well (except for the buns!). As for the cake, it had four layers, and each layer was a different flavour. The smallest layer was a gluten-free white cake.
When it was time to serve the cake, my mother, two of the bridesmaids, and I each grabbed a layer, a knife and a cookie lifter and we each served out the different flavours.
I, of course, grabbed the gluten-free layer. As everyone lined up, they'd ask me what each flavour was, and I'd recite "Gluten-free white cake, lemon cake, carrot cake, orange-chocolate marble" and everyone would immediately file past me. A few moms of kids took the white cake because their kids wouldn't like the complicated flavours, but most people turned their nose up at gluten-free.
Except for one woman who got in line and asked "Which one was gluten-free?" And I recognized that face. It's the "Wait, I can have cake?!" face. I handed her a slice and asked if she was a celiac. She was. So I also pointed out the table of sugar cookies that I made, and told her they were safe as well. I didn't talk to her again after that, but I met her son who was a bit younger than I, and he expressed how happy, grateful and excited she was that she could have some cake. He passed on: "I would never wish this on anybody, but I am so happy the bride's sister has celiac, too!"
I think that sums up how I feel too. I would never wish this on anyone, but it makes me glad when I have more options, or when I have someone who really understands how I feel.
Tuesday, 20 May 2014
Celiacs at Weddings
My big brother got married on Sunday.
I honestly never thought I would gain another sister-in-law, but I was more than thrilled to stand up for them and watch my brother gain a wife.
I will share some photos and talk more about other wedding things later, I'm sure, but for now, I wanted to tell you about a really big moment for me.
The bride (my new sister-in-law) is very sweet and caring, and she was very concerned about my dietary needs. She asked the caterer if they had gluten-free options, and actually paid a little more so there would be a gluten-free serving for me (although there wasn't, and I had potatoes, corn and salad. Not sure what happened there). And my mom made the cake, so of course they made sure I could eat some of it. They had cupcakes which were all gluten-filled and one small cake which was gluten-free.
I knew that it would be, and I ensured the knife wouldn't touch any of the cupcakes, etc. The MC announced that there were two different flavours of cupcakes and a gluten-free cake. I went up and cut a slice for myself, and one of the girls who had been at the shower asked me if I knew if it was gluten-free. I said it was, and she asked "how gluten-free," and as if I thought that would be a weird question, she told me her son had celiac disease. I looked at the twelve-year-old kid standing beside her and asked if he was a celiac. He nodded and I said "Awesome!" and high-fived him. I said I was a celiac too, and that the cake was made very conscientiously towards contamination. The boy grabbed a slice and ran off with his cake and his mom and I stood and talked for awhile about it.
I've always thought that I am so glad I was diagnosed after highschool. I can not imagine trying to get through school, especially elementary without eating gluten, or being contaminated. We talked about a lot of the challenges she faces as a celiac parent, without celiac disease, and the challenges he faces towards sleepovers, parties and school lunches. We also talked about the things he hasn't even come near yet, like drinking parties, alcohol, and work situations.
I was excited to meet another celiac (although it's becoming more and more common) and he was thrilled to have cake. Like, actually. When the MC said the cake was gluten-free, he said "Mom! I can have cake?!?!" He acted all cool about it to me, but I know how excited he was. I've been there.
I honestly never thought I would gain another sister-in-law, but I was more than thrilled to stand up for them and watch my brother gain a wife.
I will share some photos and talk more about other wedding things later, I'm sure, but for now, I wanted to tell you about a really big moment for me.
The bride (my new sister-in-law) is very sweet and caring, and she was very concerned about my dietary needs. She asked the caterer if they had gluten-free options, and actually paid a little more so there would be a gluten-free serving for me (although there wasn't, and I had potatoes, corn and salad. Not sure what happened there). And my mom made the cake, so of course they made sure I could eat some of it. They had cupcakes which were all gluten-filled and one small cake which was gluten-free.
I knew that it would be, and I ensured the knife wouldn't touch any of the cupcakes, etc. The MC announced that there were two different flavours of cupcakes and a gluten-free cake. I went up and cut a slice for myself, and one of the girls who had been at the shower asked me if I knew if it was gluten-free. I said it was, and she asked "how gluten-free," and as if I thought that would be a weird question, she told me her son had celiac disease. I looked at the twelve-year-old kid standing beside her and asked if he was a celiac. He nodded and I said "Awesome!" and high-fived him. I said I was a celiac too, and that the cake was made very conscientiously towards contamination. The boy grabbed a slice and ran off with his cake and his mom and I stood and talked for awhile about it.
I've always thought that I am so glad I was diagnosed after highschool. I can not imagine trying to get through school, especially elementary without eating gluten, or being contaminated. We talked about a lot of the challenges she faces as a celiac parent, without celiac disease, and the challenges he faces towards sleepovers, parties and school lunches. We also talked about the things he hasn't even come near yet, like drinking parties, alcohol, and work situations.
I was excited to meet another celiac (although it's becoming more and more common) and he was thrilled to have cake. Like, actually. When the MC said the cake was gluten-free, he said "Mom! I can have cake?!?!" He acted all cool about it to me, but I know how excited he was. I've been there.
Thursday, 20 March 2014
Hi, I'm a Spoonie
Hi, I'm a spoonie*.
I suffer from a chronic illness that affects me every single day. It changes how I approach tasks in my life, people in my life, and most of all, myself.
I can't explain why I'm sick so I try not to let on that I am.
I have a hard time explaining exactly how I feel, because feeling this way has become so common that I forget that most people don't feel this way.
I don't look sick, so I insist that I'm not.
There is nothing you can do to make less sick, so I don't want you to know how sick I am.
And, most importantly, my energy is a very tangible thing that comes and goes. Tasks cost a certain amount of energy, and I am sometimes forced to pick and choose what I can get done. I'm always a spoonie; my energy is always a tangible thing that I must ration out. Tasks always cost energy. However, some days I have more than enough. I don't even think about it. On good days, I wake up, get stuff done, and go non-stop. Other days, I sleep in my clothes because climbing the stairs to go to bed took the last of what energy I had. There are mornings that I wake up and I just know right away, that it is going to be a "low spoons day"; That I quite simply do not and will not have enough energy to get through everything the day is going to throw at me.
I suffer from a chronic illness that affects me every single day. It changes how I approach tasks in my life, people in my life, and most of all, myself.
I can't explain why I'm sick so I try not to let on that I am.
I have a hard time explaining exactly how I feel, because feeling this way has become so common that I forget that most people don't feel this way.
I don't look sick, so I insist that I'm not.
There is nothing you can do to make less sick, so I don't want you to know how sick I am.
And, most importantly, my energy is a very tangible thing that comes and goes. Tasks cost a certain amount of energy, and I am sometimes forced to pick and choose what I can get done. I'm always a spoonie; my energy is always a tangible thing that I must ration out. Tasks always cost energy. However, some days I have more than enough. I don't even think about it. On good days, I wake up, get stuff done, and go non-stop. Other days, I sleep in my clothes because climbing the stairs to go to bed took the last of what energy I had. There are mornings that I wake up and I just know right away, that it is going to be a "low spoons day"; That I quite simply do not and will not have enough energy to get through everything the day is going to throw at me.
Saturday, 22 February 2014
One Year
Well, we've arrived, I guess. It's been one year.
I have been eating gluten-free for one year.
I have known that I have a life-long incurable disease for one year.
I started this blog one year ago.
But what does that mean? It's not like a birthday, I can't celebrate with (gluten-free) cake. It's not like the anniversary of a death, I'm not sad and melancholy. One year ago, I got some very hard-to-hear news, and it started me on the best path of my life. It is sad, happy, and strange. I don't know how to feel.
It's crazy to think that one year ago, I thought I was physically normal, I never would have guessed that I had any sort of disease, nevermind an autoimmune disorder. It's crazy to think that one year ago, I was so sick, I couldn't walk from the couch to the fridge without sitting down halfway. It's crazy.
I have been eating gluten-free for one year.
I have known that I have a life-long incurable disease for one year.
I started this blog one year ago.
But what does that mean? It's not like a birthday, I can't celebrate with (gluten-free) cake. It's not like the anniversary of a death, I'm not sad and melancholy. One year ago, I got some very hard-to-hear news, and it started me on the best path of my life. It is sad, happy, and strange. I don't know how to feel.
It's crazy to think that one year ago, I thought I was physically normal, I never would have guessed that I had any sort of disease, nevermind an autoimmune disorder. It's crazy to think that one year ago, I was so sick, I couldn't walk from the couch to the fridge without sitting down halfway. It's crazy.
Thursday, 28 November 2013
Gluten Free Support Group
The second-ever gluten-free support group was last night. Last time, eight or nine people showed up. I figured more would come this time, but for some reason, there were only four of us. All four of us had been to the last one, too.
Two of the women were the ones that organized it and put it all together. The third was one that I remember from last time as a non-stop talker. Irrelevant, unrelated things that she just didn't stop talking about.
I arrived a little early, and sat down alone while the woman running it ran around like a chicken with her head cut off. The next woman to arrive was the talkative one. I recognized her, but I don't think she recognized me. She sat down next to me and said, "So, how long have you been diagnosed with all this business?"
I smiled and said, "Nine months." I was thinking that morning that if my celiac disease had been a pregnancy instead, I'd have a baby by now.
She gave me a smile that I can only describe as an 'Oh honey' smile and said, "You're still learning."
Two of the women were the ones that organized it and put it all together. The third was one that I remember from last time as a non-stop talker. Irrelevant, unrelated things that she just didn't stop talking about.
I arrived a little early, and sat down alone while the woman running it ran around like a chicken with her head cut off. The next woman to arrive was the talkative one. I recognized her, but I don't think she recognized me. She sat down next to me and said, "So, how long have you been diagnosed with all this business?"
I smiled and said, "Nine months." I was thinking that morning that if my celiac disease had been a pregnancy instead, I'd have a baby by now.
She gave me a smile that I can only describe as an 'Oh honey' smile and said, "You're still learning."
Friday, 15 November 2013
My Strainer Fiasco
Contamination is one of those tricky subjects. A lot of celiacs will turn blue trying to avoid any form of contamination, refusing to eat food that even entered a kitchen containing gluten. Some people seem to think contamination isn't a big deal at all, giving me looks when I ask that they wash that knife or grab a new spoon. There's a spectrum of people at every level in between.
Personally, I do as much as I can. People who live in my house eat gluten. That means my kitchen has gluten in it. Crumbs get on the counters, dirty dishes go in the dishwasher, things happen. I wash all of the dishes in the same loads, and I definitely don't have a separate set of utensils. I don't use a dish if someone else has used it, no matter what they used it for. I don't put my food on a bare counter unless I just wiped it down. I think I toe a pretty safe line.
Personally, I do as much as I can. People who live in my house eat gluten. That means my kitchen has gluten in it. Crumbs get on the counters, dirty dishes go in the dishwasher, things happen. I wash all of the dishes in the same loads, and I definitely don't have a separate set of utensils. I don't use a dish if someone else has used it, no matter what they used it for. I don't put my food on a bare counter unless I just wiped it down. I think I toe a pretty safe line.
Thursday, 26 September 2013
Gluten Free Support Group
I stumbled across an ad for a gluten-free support group meeting the other day, and I thought, How on Earth did I not know about this? Well, it turns out it was the very first meeting. So I guess that was lucky. I toyed with the idea of going, decided not to, decided to, and eventually M said I would regret not going, but chances are that I wouldn't regret going. So I went.
It was last night, and the meeting only lasted an hour.
I expected the meeting to be full of pretensious, obnoxious, quinoa-eating, GF-fad people and people who didn't know what they were talking about. As it turned out, there was only one woman who didn't know what she was talking about, and nobody was there as a fad-eater.
I was, however, the youngest person. By about 20 or 30 years. I also was the newest celiac, with everyone else's diagnosis dates ranging from three years to twenty-two, and one woman whose husband was diagnosed in the 1960's. I didn't really learn anything, as this was more of a "gather, chat, share, and support each other" kind of meeting. Which was really nice.
I talked about my diagnosis, how sick I was, how sick I've been, how hard it is not to cheat, and how I really shouldn't eat dairy but I do. And I got nods, sympathetic smiles and "I've been there" looks. The other women talked about their struggles, their peripheral symptoms, their children, and husbands, and just plain struggles.
One woman was IBS, so she was free from gluten, soy, corn, potatoes, dairy, and a growing list of smaller things. A few women weren't diagnosed, and hadn't seen doctors (they got a few disapproving looks), they just found they felt better eating gluten-free. One of these women said her mother and grandmother struggled with chronic constipation, so she went GF to avoid that, and has never actually been all that sick.
One woman was, well, kind of ignorant. She talked about seeing a naturopath, having digestive issues, and being told not to eat gluten, dairy or soy. She talked about a few of her favourite recipes, one of which used oat bran. There was a definite look shared amongst the group. Oats are one of those iffy things that people disagree on. She caught that, and said she sometimes substitutes with wheat bran. That's when one of the older woman said that wouldn't be gluten-free then.
Another woman talked about how wheat causes cancer, and how nobody should eat gluten, because you'll get cancer. She knows because her dad died of cancer, her brother has cancer, her uncle died of cancer, she knows all these people who have cancer or died of cancer. Thing is, none of them had stomach cancer, or intestinal cancer. There was brain cancer, lung, skin, and breast.
I mean, you're free to believe what you want, and eat what you feel safe eating. But I don't think you should go around spouting crazy and make uninformed people afraid. Also, every single person in the room had a problem with wheat. She was kind of preaching to the choir.
For the most part, though, I really enjoyed it. It was nice to chat with women who understand what I went through, and what I go through every day. One of them was actually friends with my mom, and although I hadn't met her before, when I was first diagnosed, my mom passed along a form letter from her. It was a "Hi, welcome to gluten-free. It sucks. These products rock, you can buy them here, and here are a few basic recipes I rely on. This is how I make my flour. Feel free to email me." It took a week before I even read it, because I didn't want help. I didn't want to talk to people. I was angry, I felt alone, and I pushed away everyone who wanted to help me. I admitted to this woman that I had gotten her email, but had never made anything, and didn't even want to read it at the time. She smiled, nodded, and said, "I know. It's hard, you don't want anybody's help, and you're so angry." It was such a weight off my shoulders (one I didn't know was there) for someone to verify the way that I used to feel.
It really was nice to just sit in the company of half a dozen people who understood. I've had a few conversations with other celiacs (slash other gluten free people for various reasons) and sometimes I walk away shaking my head, and sometimes I feel a bit better about things. I won't be calling up these women and regularly hanging out with them, but I will definitely try to make it to the next meeting.
It was last night, and the meeting only lasted an hour.
I expected the meeting to be full of pretensious, obnoxious, quinoa-eating, GF-fad people and people who didn't know what they were talking about. As it turned out, there was only one woman who didn't know what she was talking about, and nobody was there as a fad-eater.
I was, however, the youngest person. By about 20 or 30 years. I also was the newest celiac, with everyone else's diagnosis dates ranging from three years to twenty-two, and one woman whose husband was diagnosed in the 1960's. I didn't really learn anything, as this was more of a "gather, chat, share, and support each other" kind of meeting. Which was really nice.
I talked about my diagnosis, how sick I was, how sick I've been, how hard it is not to cheat, and how I really shouldn't eat dairy but I do. And I got nods, sympathetic smiles and "I've been there" looks. The other women talked about their struggles, their peripheral symptoms, their children, and husbands, and just plain struggles.
One woman was IBS, so she was free from gluten, soy, corn, potatoes, dairy, and a growing list of smaller things. A few women weren't diagnosed, and hadn't seen doctors (they got a few disapproving looks), they just found they felt better eating gluten-free. One of these women said her mother and grandmother struggled with chronic constipation, so she went GF to avoid that, and has never actually been all that sick.
One woman was, well, kind of ignorant. She talked about seeing a naturopath, having digestive issues, and being told not to eat gluten, dairy or soy. She talked about a few of her favourite recipes, one of which used oat bran. There was a definite look shared amongst the group. Oats are one of those iffy things that people disagree on. She caught that, and said she sometimes substitutes with wheat bran. That's when one of the older woman said that wouldn't be gluten-free then.
Another woman talked about how wheat causes cancer, and how nobody should eat gluten, because you'll get cancer. She knows because her dad died of cancer, her brother has cancer, her uncle died of cancer, she knows all these people who have cancer or died of cancer. Thing is, none of them had stomach cancer, or intestinal cancer. There was brain cancer, lung, skin, and breast.
I mean, you're free to believe what you want, and eat what you feel safe eating. But I don't think you should go around spouting crazy and make uninformed people afraid. Also, every single person in the room had a problem with wheat. She was kind of preaching to the choir.
For the most part, though, I really enjoyed it. It was nice to chat with women who understand what I went through, and what I go through every day. One of them was actually friends with my mom, and although I hadn't met her before, when I was first diagnosed, my mom passed along a form letter from her. It was a "Hi, welcome to gluten-free. It sucks. These products rock, you can buy them here, and here are a few basic recipes I rely on. This is how I make my flour. Feel free to email me." It took a week before I even read it, because I didn't want help. I didn't want to talk to people. I was angry, I felt alone, and I pushed away everyone who wanted to help me. I admitted to this woman that I had gotten her email, but had never made anything, and didn't even want to read it at the time. She smiled, nodded, and said, "I know. It's hard, you don't want anybody's help, and you're so angry." It was such a weight off my shoulders (one I didn't know was there) for someone to verify the way that I used to feel.
It really was nice to just sit in the company of half a dozen people who understood. I've had a few conversations with other celiacs (slash other gluten free people for various reasons) and sometimes I walk away shaking my head, and sometimes I feel a bit better about things. I won't be calling up these women and regularly hanging out with them, but I will definitely try to make it to the next meeting.
Labels:
Celiacs,
Crazies,
IBS,
Personal posts,
Support group
Tuesday, 17 September 2013
Spoon Theory
Have you heard of the spoon theory?
Essentially, two girls were in a diner, and one was trying to explain how she felt, what it was like living with a chronic disease or chronic fatigue. She ran around the diner and grabbed all the spoons and gave them to her friend. She then talked her through a normal day, and for every activity that required energy, she took a spoon away.
Wake up, and take a shower. There goes a spoon.
Make breakfast, so there's a meal in your stomach to cushion the many pills you take, that's a spoon.
Throughout the day, she slowly lost most of her spoons, until they got to the end of the day, when she had one spoon left. Make dinner, or do laundry? You can't do it all, you only have one more spoon.
I stumbled across this theory a week or two ago, and thought it was really interesting. What I didn't like was the culture of "spoonies". People who are living life like this, who feel like life takes something tangible every time they do something, connect and call themselves spoonies. To be honest, I mostly didn't like the culture because a woman online snapped at me, and was very rude, while identifying herself as "another heavily-medicated celiac spoonie" as if that was some excuse for her terrible attitude. I looked into the culture a little more, and anyone who identified themselves as a spoonie on their public profile bothered me. They were either rude, self-centered, or hiding behind this label as an excuse.
As I slowly processed it all and examined my life, I realized I was one. I used the word "go-juice". I'll frequently tell M, "I'm running out of go-juice". He's heard that all the time. He also watches me lay on the couch and beg him to do something as basic as grab me a glass of water. Sometimes he calls me lazy, sometimes he understands that I'm just sapped. What he doesn't understand is later, when I get up and have enough energy to do something else. It's not that I'm completely worn out, or exhausted. I'm weighing the pros and cons of whatever task I'm facing against how much energy it's going to take. I am aware that my energy is limited, and it's quite tangible to me. Even when I wake up in the morning, I know I only have so much energy to get through my day. Sometimes I have more, sometimes I have less. There are certain things I can do to get more, and certain things that I usually skip over to keep as much energy as possible.
As I came to the realization that I am, in fact, a spoonie, I started using the word "spoon". I've been telling M things like, "But that'll cost me two spoons" "I don't have a spoon for that" "That's worth the spoon".
I'm not going to identify myself as a spoonie. I'm not going to hide behind that word and use it as an excuse for everything negative that I do. I am, however, going to remind the close people in my life that my energy is a tangible, real thing, that slowly goes away, whether or not I like it. I am going to use the spoon theory for exactly the same reason the first girl came up with it. To explain to all those normal people out there how I face every day, and why I make the decisions that I do. It's not that I'm lazy, or even sleep-deprived. It's just that I'm out of spoons.
I wish I didn't have to use the word "spoon". I keep looking for something else, just so I don't have to identify with all those jerks, but I haven't found something quite so understandable and tangible. I like go-juice, but juice is liquid, viscous, and refillable. I think I'll stick with "spoon" for now. A lot of people have heard the spoon theory, and will understand, so until I find something that rocks my socks, I'll keep going through spoons.
There's this moment that happens almost every day, sometimes more than once a day. When I am still, laying on the couch, sitting in the car, sitting in my chair at work, and the time comes that I have to get up. I stay still for a moment longer, and mentally go over my bone-weary body, feeling all the spots that are just wiped. I feel the dull ache in my back, I'm hyper-aware of my stiff joints, and then I think about whatever it is I'm about to do or want to do. Sometimes I sit still a moment longer, and that's when I know I'm a spoonie. When I take that moment to go, "Is it really worth it?" Whether "it" be a glass of water, a grocery shopping trip, or even just the act of getting up. It drives my husband nuts. We'll pull up in the car to wherever it is we're going, and he'll jump out, and then realize I'm still in the car. He'll walk around to my side, and I'll just be sitting there, staring at my purse in the back seat. I take a deep breath, reach back, grab my purse, and go. He used to get frustrated, but now that I've explained how I'm feeling and dealing, he understands. He'll often open my door or grab my purse for me. The moment to breath gets longer and longer as the day goes on. Early in the morning, it's a few seconds, but late at night, sometimes I'll tell him to just go in without me, because whatever it is just isn't worth what it's going to take from me. That's all just in the car, but this also happens at work, when I realize I need to grab a paper from the printer, take a message to somebody, or even just pour myself a cup of coffee. I'll put it off, I'll sit still, I'll take a moment to breath. And it's the worst on the couch. Once I lay down, there's almost no getting up. I can rationalize myself out of anything if I'm laying on the couch.
Thing is though, I've been doing this for at least year and a half. When I worked my old super-boring job, I missed a lot of days doing this. I'd be sitting/laying somewhere, and think about going to work, and ultimately decide the energy it would take wasn't worth it. I wasn't necessary for the workplace to function, and if it was going to take just a bit too much from me, I wouldn't go. I would stay put. I'd talk myself into going often enough that I kept my job. My boss understood, and when I was diagnosed, he understood twice as much. I couldn't have explained then how I felt about my energy levels, but he understood anyways. Now that I am necessary for the workplace to function, I haven't talked myself into not going, not even once, to either job. But I talk myself out of other necessary things, just to sacrifice that bit of energy for work.
Essentially, two girls were in a diner, and one was trying to explain how she felt, what it was like living with a chronic disease or chronic fatigue. She ran around the diner and grabbed all the spoons and gave them to her friend. She then talked her through a normal day, and for every activity that required energy, she took a spoon away.
Wake up, and take a shower. There goes a spoon.
Make breakfast, so there's a meal in your stomach to cushion the many pills you take, that's a spoon.
Throughout the day, she slowly lost most of her spoons, until they got to the end of the day, when she had one spoon left. Make dinner, or do laundry? You can't do it all, you only have one more spoon.
I stumbled across this theory a week or two ago, and thought it was really interesting. What I didn't like was the culture of "spoonies". People who are living life like this, who feel like life takes something tangible every time they do something, connect and call themselves spoonies. To be honest, I mostly didn't like the culture because a woman online snapped at me, and was very rude, while identifying herself as "another heavily-medicated celiac spoonie" as if that was some excuse for her terrible attitude. I looked into the culture a little more, and anyone who identified themselves as a spoonie on their public profile bothered me. They were either rude, self-centered, or hiding behind this label as an excuse.
As I slowly processed it all and examined my life, I realized I was one. I used the word "go-juice". I'll frequently tell M, "I'm running out of go-juice". He's heard that all the time. He also watches me lay on the couch and beg him to do something as basic as grab me a glass of water. Sometimes he calls me lazy, sometimes he understands that I'm just sapped. What he doesn't understand is later, when I get up and have enough energy to do something else. It's not that I'm completely worn out, or exhausted. I'm weighing the pros and cons of whatever task I'm facing against how much energy it's going to take. I am aware that my energy is limited, and it's quite tangible to me. Even when I wake up in the morning, I know I only have so much energy to get through my day. Sometimes I have more, sometimes I have less. There are certain things I can do to get more, and certain things that I usually skip over to keep as much energy as possible.
As I came to the realization that I am, in fact, a spoonie, I started using the word "spoon". I've been telling M things like, "But that'll cost me two spoons" "I don't have a spoon for that" "That's worth the spoon".
I'm not going to identify myself as a spoonie. I'm not going to hide behind that word and use it as an excuse for everything negative that I do. I am, however, going to remind the close people in my life that my energy is a tangible, real thing, that slowly goes away, whether or not I like it. I am going to use the spoon theory for exactly the same reason the first girl came up with it. To explain to all those normal people out there how I face every day, and why I make the decisions that I do. It's not that I'm lazy, or even sleep-deprived. It's just that I'm out of spoons.
I wish I didn't have to use the word "spoon". I keep looking for something else, just so I don't have to identify with all those jerks, but I haven't found something quite so understandable and tangible. I like go-juice, but juice is liquid, viscous, and refillable. I think I'll stick with "spoon" for now. A lot of people have heard the spoon theory, and will understand, so until I find something that rocks my socks, I'll keep going through spoons.
There's this moment that happens almost every day, sometimes more than once a day. When I am still, laying on the couch, sitting in the car, sitting in my chair at work, and the time comes that I have to get up. I stay still for a moment longer, and mentally go over my bone-weary body, feeling all the spots that are just wiped. I feel the dull ache in my back, I'm hyper-aware of my stiff joints, and then I think about whatever it is I'm about to do or want to do. Sometimes I sit still a moment longer, and that's when I know I'm a spoonie. When I take that moment to go, "Is it really worth it?" Whether "it" be a glass of water, a grocery shopping trip, or even just the act of getting up. It drives my husband nuts. We'll pull up in the car to wherever it is we're going, and he'll jump out, and then realize I'm still in the car. He'll walk around to my side, and I'll just be sitting there, staring at my purse in the back seat. I take a deep breath, reach back, grab my purse, and go. He used to get frustrated, but now that I've explained how I'm feeling and dealing, he understands. He'll often open my door or grab my purse for me. The moment to breath gets longer and longer as the day goes on. Early in the morning, it's a few seconds, but late at night, sometimes I'll tell him to just go in without me, because whatever it is just isn't worth what it's going to take from me. That's all just in the car, but this also happens at work, when I realize I need to grab a paper from the printer, take a message to somebody, or even just pour myself a cup of coffee. I'll put it off, I'll sit still, I'll take a moment to breath. And it's the worst on the couch. Once I lay down, there's almost no getting up. I can rationalize myself out of anything if I'm laying on the couch.
Thing is though, I've been doing this for at least year and a half. When I worked my old super-boring job, I missed a lot of days doing this. I'd be sitting/laying somewhere, and think about going to work, and ultimately decide the energy it would take wasn't worth it. I wasn't necessary for the workplace to function, and if it was going to take just a bit too much from me, I wouldn't go. I would stay put. I'd talk myself into going often enough that I kept my job. My boss understood, and when I was diagnosed, he understood twice as much. I couldn't have explained then how I felt about my energy levels, but he understood anyways. Now that I am necessary for the workplace to function, I haven't talked myself into not going, not even once, to either job. But I talk myself out of other necessary things, just to sacrifice that bit of energy for work.
Saturday, 20 April 2013
Day 58: Earl's
Banana and I made another trip to Saskatoon today. You must think I go there all the time. It's funny. Before this January, I had been there exactly four times. All four of those times revolved around a surgery I had five years ago (MRI, consultation with a surgeon, surgery, and then a check-up). But that's life, I guess. When it rains, it pours, and whatnot.
Anyways, because her hair henna didn't work two weeks ago, she called the store and they said if she could come back in, they would do it again, for her. So we pretty much made a 2.5 hour drive for a hair appointment.
Lush is really amazing though. They told me it would take about an hour and a half, so if I wanted, they could give me a foot treatment while I waited! So Banana and I soaked our feet in water with a bath fizz, and then had them exfoliated, masked, and lotioned. A-maze-ing. Seriously.
Afterwards, we went to Earl's. We have a friend who's going to school in Saskatoon, and so we said she could pick the place. I googled Earl's gluten-free menu, and it was pretty sad, but it did say that the menu varies restaurant to restaurant. Okay, I'm acting like I was optimistic. I was not. I've been to Earl's before, and I don't really like it, I think it's overpriced, and last time, the server was rude. But, I haven't seen this friend in awhile, and she really had her heart set. So we went.
I stared down the menu forever. Not a thing on it said anything about gluten-free (no pasta or pizza alternatives), and everything I studied was not safe. I pulled out the googled menu, and there were only two things on it and on the menu in front of me; a garden greens salad and a blackened chicken dish. I don't like blackened chicken. So when the waitress came by again, ready for our order, I told her that I couldn't have gluten, and she says, "Oh! We have a gluten-free menu. Do you want me to go grab it?"
It was a single sheet of paper, not laminated or anything, and it at one point in time, it was wet. It was wrinkly and honestly felt like either a kid's menu shoved under the front counter, or something they just forgot about entirely.
There were exactly 13 options on this menu. Three of those were steak (I don't like steak either). Three of them were burgers or sandwiches, served without the bun. Pardon me if I don't want a chicken breast topped with lettuce, tomato and mayo. Pardon me if I don't know how I'm supposed to go about eating that. There was the blackened chicken, and then a salmon dish and a chicken dish, both of which had a star that said the sauces would be omitted. Then there four salads. The garden greens, two that would be served without the chicken, and a mexican style salad (beans and such) that would be served without the taco.
The only things on the menu that didn't have something omitted (not alternatives, or subbed out, but actually just omitted) were the garden greens, the blackened chicken and the steaks.
Okay, I know I've talked about good days and bad days before. They have nothing to do with being sick, and everything to do with how much I can handle, how much I want other food. Some days, I can sit there and watch a friend eat a burger or a sandwich and not even bat an eyelash. Other days, I drive past Tim Hortons and tear up a bit. Yesterday was a very bad day. The worst I've had in a few weeks. Today wasn't all that much better.
So I'm really struggling with everything already, and now I'm staring down a menu that says, "You can't have anything normal. We don't care about your allergy. It's obviously a preference, so you can select an inferior dish from this crappy menu, because you made a choice." At least, that's how I felt. All of my options were inferior.
So I ordered a salad, one of the ones that was supposed to have mushroom-breaded chicken on it. It had brie cheese, apple, a maple dressing... It sounded good, and if not for the asterix that reminded me I can't be normal, I would have been happy with it.
When I ordered, the waitress said, "So you don't want it with the chicken, right?" I was kind of like "Uhhh... Yeah. Hello?" But I just said, "Yeah. Also, I have a gluten allergy." She says, "Okay... Allergy... Wait, what kind?" Seriously. I'm holding the gluten-free menu, ordering the gluten-free salad, I want the cooks to know it's an allergy, and she doesn't remember what kind? So I had fantastic hopes for cross contamination...
Banana got the same salad. She had decided on it before I did, but of course she got the chicken. A different waitress brought our food, served the sandwich first, then the "Maple salad with chicken? And maple salad without chicken? Wait, you didn't want the chicken, right?" Oh my gosh. I know I shouldn't be so neurotic about cross contamination, but I am. What if she dropped something on my plate? She'd just pick it up and move on. Ugh.
So, lesson from today? Don't go to Earl's. Ever again.
I think I was spoiled by Moxie's, or something.
But... I do have the most awesome friends ever. I had been talking to a sales girl back at Lush, and found out her mom had Celiac too, so we were sharing experiences. I admitted the one thing I wanted the most was poutine. I could just make it, if I buy gluten-free gravy, but you can't buy good cheese curds here. She said there was a restaurant downtown that had a bunch of great GF options, including poutine!! I really wanted to go there, but we went to Earl's instead. So after we were done, without telling me, they drove to The Hollows, and I had poutine!
It made me so happy. Partly because I was really hungry and really needed something I could eat, and partly because I had been craving poutine so bad. It was fantastic, too. Made with gluten-free chicken gravy, and cheese curds, and it was actually layered, not just slathered on top. Mmm. Best poutine I've ever had. (Okay, maybe not really, but it should felt that way.) I was so glad for my friends. I'm really lucky to have so many people in my life who understand what this all means to me.
Anyways, because her hair henna didn't work two weeks ago, she called the store and they said if she could come back in, they would do it again, for her. So we pretty much made a 2.5 hour drive for a hair appointment.
Lush is really amazing though. They told me it would take about an hour and a half, so if I wanted, they could give me a foot treatment while I waited! So Banana and I soaked our feet in water with a bath fizz, and then had them exfoliated, masked, and lotioned. A-maze-ing. Seriously.
Afterwards, we went to Earl's. We have a friend who's going to school in Saskatoon, and so we said she could pick the place. I googled Earl's gluten-free menu, and it was pretty sad, but it did say that the menu varies restaurant to restaurant. Okay, I'm acting like I was optimistic. I was not. I've been to Earl's before, and I don't really like it, I think it's overpriced, and last time, the server was rude. But, I haven't seen this friend in awhile, and she really had her heart set. So we went.
I stared down the menu forever. Not a thing on it said anything about gluten-free (no pasta or pizza alternatives), and everything I studied was not safe. I pulled out the googled menu, and there were only two things on it and on the menu in front of me; a garden greens salad and a blackened chicken dish. I don't like blackened chicken. So when the waitress came by again, ready for our order, I told her that I couldn't have gluten, and she says, "Oh! We have a gluten-free menu. Do you want me to go grab it?"
It was a single sheet of paper, not laminated or anything, and it at one point in time, it was wet. It was wrinkly and honestly felt like either a kid's menu shoved under the front counter, or something they just forgot about entirely.
There were exactly 13 options on this menu. Three of those were steak (I don't like steak either). Three of them were burgers or sandwiches, served without the bun. Pardon me if I don't want a chicken breast topped with lettuce, tomato and mayo. Pardon me if I don't know how I'm supposed to go about eating that. There was the blackened chicken, and then a salmon dish and a chicken dish, both of which had a star that said the sauces would be omitted. Then there four salads. The garden greens, two that would be served without the chicken, and a mexican style salad (beans and such) that would be served without the taco.
The only things on the menu that didn't have something omitted (not alternatives, or subbed out, but actually just omitted) were the garden greens, the blackened chicken and the steaks.
Okay, I know I've talked about good days and bad days before. They have nothing to do with being sick, and everything to do with how much I can handle, how much I want other food. Some days, I can sit there and watch a friend eat a burger or a sandwich and not even bat an eyelash. Other days, I drive past Tim Hortons and tear up a bit. Yesterday was a very bad day. The worst I've had in a few weeks. Today wasn't all that much better.
So I'm really struggling with everything already, and now I'm staring down a menu that says, "You can't have anything normal. We don't care about your allergy. It's obviously a preference, so you can select an inferior dish from this crappy menu, because you made a choice." At least, that's how I felt. All of my options were inferior.
So I ordered a salad, one of the ones that was supposed to have mushroom-breaded chicken on it. It had brie cheese, apple, a maple dressing... It sounded good, and if not for the asterix that reminded me I can't be normal, I would have been happy with it.
When I ordered, the waitress said, "So you don't want it with the chicken, right?" I was kind of like "Uhhh... Yeah. Hello?" But I just said, "Yeah. Also, I have a gluten allergy." She says, "Okay... Allergy... Wait, what kind?" Seriously. I'm holding the gluten-free menu, ordering the gluten-free salad, I want the cooks to know it's an allergy, and she doesn't remember what kind? So I had fantastic hopes for cross contamination...
Banana got the same salad. She had decided on it before I did, but of course she got the chicken. A different waitress brought our food, served the sandwich first, then the "Maple salad with chicken? And maple salad without chicken? Wait, you didn't want the chicken, right?" Oh my gosh. I know I shouldn't be so neurotic about cross contamination, but I am. What if she dropped something on my plate? She'd just pick it up and move on. Ugh.
So, lesson from today? Don't go to Earl's. Ever again.
I think I was spoiled by Moxie's, or something.
But... I do have the most awesome friends ever. I had been talking to a sales girl back at Lush, and found out her mom had Celiac too, so we were sharing experiences. I admitted the one thing I wanted the most was poutine. I could just make it, if I buy gluten-free gravy, but you can't buy good cheese curds here. She said there was a restaurant downtown that had a bunch of great GF options, including poutine!! I really wanted to go there, but we went to Earl's instead. So after we were done, without telling me, they drove to The Hollows, and I had poutine!
It made me so happy. Partly because I was really hungry and really needed something I could eat, and partly because I had been craving poutine so bad. It was fantastic, too. Made with gluten-free chicken gravy, and cheese curds, and it was actually layered, not just slathered on top. Mmm. Best poutine I've ever had. (Okay, maybe not really, but it should felt that way.) I was so glad for my friends. I'm really lucky to have so many people in my life who understand what this all means to me.
Saturday, 9 March 2013
Day 16: A Day of Eating Out
Well, today I had to brave my fear of eating out and ordering food. All day, really. We didn't have much for plans when we woke up, but early on my friend (the one who just came home from Thailand) asked if I wanted to go the bigger city with her, so she could get a new phone. Yeah, we live in a small town, in case you hadn't picked up on that. She had evening plans, so we wouldn't spend all day there, just and in-and-out kind of trip. I pointed out that I needed to eat soon, and she said that Wok Box, which is one of our favourite restaurants totally has a gluten-free menu.
So, excited, we took off. We went to Wok Box first, because I was hungry, and now... I had to order. I guess I have a couple of times, I just avoid it as much as possible. I said, "Hi, umm, I'm gluten-free. I want the Pad Thai." My brain was just somewhere else, so every question he asked I had a hard time answering, and I felt really dumb. I also felt really obnoxious, and like "one of those people". I hate that. My friend said the guy practically rolled his eyes when I started talking too. Ugh. I could have just died. So. I had my Pad Thai. It was delicious, and spicy, and apparently not very authentic, but I don't really need to eat true Asain food in Canada...
So we went to the mall, and she got a new phone, and then basically just came home again. She did buy shoes too, I guess. Back in town, we did some quick grocery shopping. Just the stuff I couldn't live without, like milk and butter and greek yogurt.
And then for dinner, she had planned a week ago to have a "Welcome back to Canada" dinner with her friends, and hubby and I were going. So we pretty well got home, unpacked groceries and then went right back out for dinner at Boston Pizza. She picked there because she knew they have gluten-free options.
One of her friends there is a vegetarian. I kind of wish I just had to be vegetarian. It's a lot easier and there's a lot less crossed off your list.
Anyways, I decided on the gluten-free pizza. Thought I might as well get it over with and try one. This time, I ordered, a "Hawaiian pizza with the gluten-free crust, and I have a gluten allergy." Which seems waaaaaay less obnoxious, and actually makes it more likely they'll change their gloves and stuff. People who eat gluten-free keep telling me not to trust BP's, because they don't worry about cross-contamination, but our roommate works there, and he says they usually treat any gluten-free food like and allergy and change gloves and stuff, so....
Also, the more I read celiac forums, and talk to celiac people and stuff, the more confused I get. Some people (being the majority online) are super anal. Like, to the point that you basically should just never eat anything you don't make yourself at home from ingredients that say gluten-free on them. And then I talk to people that just make sure they don't actively consume gluten. I don't know how much I'm going to worry about cross-contamination. I guess once I start feeling better most days I can judge whether or not a certain amount of contamination was too much for me. Like lots of people say they went to a restaurant and that was a mistake so they'll never go again, or they learned not to do a certain thing, or whatever. But right now I have a hard time telling if I've crossed my line because I feel crappy all the time.
Anyways... I think I'm going to avoid going out for dinner for awhile. I felt so awful the whole time, I was probably the worst company ever. I know I'm whiny and sick and complaining, so I should just quarantine myself until I get better, instead of forcing myself on others.
Oh! And my mom made a trip to the big city today too. She stopped by the gluten-free bakery for me, and bought me some yummies! I considered telling that I could just do it because we were there, but we didn't have much time, and I know she wants to be helpful and supportive. I really appreciate her. She bought me waffles, cranberry orange bread, cinnamon raisin bread, and some pizza crusts, all frozen. And she gave me a cake she'd had in her freezer. So now my freezer is full of yummy safe things. =]
So, excited, we took off. We went to Wok Box first, because I was hungry, and now... I had to order. I guess I have a couple of times, I just avoid it as much as possible. I said, "Hi, umm, I'm gluten-free. I want the Pad Thai." My brain was just somewhere else, so every question he asked I had a hard time answering, and I felt really dumb. I also felt really obnoxious, and like "one of those people". I hate that. My friend said the guy practically rolled his eyes when I started talking too. Ugh. I could have just died. So. I had my Pad Thai. It was delicious, and spicy, and apparently not very authentic, but I don't really need to eat true Asain food in Canada...
So we went to the mall, and she got a new phone, and then basically just came home again. She did buy shoes too, I guess. Back in town, we did some quick grocery shopping. Just the stuff I couldn't live without, like milk and butter and greek yogurt.
And then for dinner, she had planned a week ago to have a "Welcome back to Canada" dinner with her friends, and hubby and I were going. So we pretty well got home, unpacked groceries and then went right back out for dinner at Boston Pizza. She picked there because she knew they have gluten-free options.
One of her friends there is a vegetarian. I kind of wish I just had to be vegetarian. It's a lot easier and there's a lot less crossed off your list.
Anyways, I decided on the gluten-free pizza. Thought I might as well get it over with and try one. This time, I ordered, a "Hawaiian pizza with the gluten-free crust, and I have a gluten allergy." Which seems waaaaaay less obnoxious, and actually makes it more likely they'll change their gloves and stuff. People who eat gluten-free keep telling me not to trust BP's, because they don't worry about cross-contamination, but our roommate works there, and he says they usually treat any gluten-free food like and allergy and change gloves and stuff, so....
Also, the more I read celiac forums, and talk to celiac people and stuff, the more confused I get. Some people (being the majority online) are super anal. Like, to the point that you basically should just never eat anything you don't make yourself at home from ingredients that say gluten-free on them. And then I talk to people that just make sure they don't actively consume gluten. I don't know how much I'm going to worry about cross-contamination. I guess once I start feeling better most days I can judge whether or not a certain amount of contamination was too much for me. Like lots of people say they went to a restaurant and that was a mistake so they'll never go again, or they learned not to do a certain thing, or whatever. But right now I have a hard time telling if I've crossed my line because I feel crappy all the time.
Anyways... I think I'm going to avoid going out for dinner for awhile. I felt so awful the whole time, I was probably the worst company ever. I know I'm whiny and sick and complaining, so I should just quarantine myself until I get better, instead of forcing myself on others.
Oh! And my mom made a trip to the big city today too. She stopped by the gluten-free bakery for me, and bought me some yummies! I considered telling that I could just do it because we were there, but we didn't have much time, and I know she wants to be helpful and supportive. I really appreciate her. She bought me waffles, cranberry orange bread, cinnamon raisin bread, and some pizza crusts, all frozen. And she gave me a cake she'd had in her freezer. So now my freezer is full of yummy safe things. =]
Labels:
Asian food,
Celiacs,
Dinner,
Eating out,
pizza,
Shopping,
Vegetarian
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