Tuesday, July 16, 2013

Pass me the bread



“What do you want to eat?” it’s a common question, but for me these are six of the scariest words in the English language. I have Interstitial Cystitis (IC), a chronic bladder disease where the symptoms are most similar to a urinary tract infection that never goes away. IC is a disease best controlled by extensive diet modifications. Because of my illness, I haven’t eaten citrus fruit in over three years. Imagine that, three years without an orange. I can’t have coffee, tea, chocolate, or alcohol. My salads are dressing free and I avoid sauces and spices with almost religious fervor. I spent the first year of my illness living on a diet of toast, as I slowly learned which foods were safe and which foods would land in me in the doctor’s office. So when my boyfriend asks me where I want to eat or what food I am in the mood for, I am often struck dumb with terror and paralyzed with shame. I know IC isn’t my fault and that I haven’t done anything wrong. But I feel bad that he is limited to the diners, burger joints, and pho restaurants where I feel safe. “Oh, god,” I think to myself, “nobody else should have to live a life this devoid of flavor”
Its not just dating that is difficult with the IC diet; it is every social occasion. American’s love food, we celebrate with food, we mourn with food, and we bond over a cup of coffee or drinks at the bar. At a recent party with friends, the dining room table was filled with chocolate swirl cheesecake, a collection of meaty sauce laden sandwiches, pigs in a blanket, and French bread with cheese. As I nibbled my dry bread and cheese, I tried to look at the bright side. At least I wouldn’t gain any weight from the cheesecake. I am very good at looking at the bright side. Because I don’t drink I am always the designated driver, which often means I am the only one who can remember everything that happened in an evening. Still, despite my attempts to see the silver lining I usually feel like I am standing under a perpetual rain cloud. It sucks to be the only girl at the bar nursing a glass of cold water, while friends toast with champagne cocktails or do shots of tequila. Bartender’s give me dirty looks for wasting their time and waitresses sigh dramatically when I pepper them with questions about what ingredients go into their food. A simple occasion like a family dinner or a potluck, is a minefield that must be negotiated with the delicacy of a bomb diffuser. I am always faced with the same choice: over share and explain my disease or try and obfuscate my reasons under a blanket of polite excuses. It’s usually better just to eat first and decline everything but the safest foods. I’ve toyed with Nan in Indian restaurants,  moved plain white rice and broccoli around my plate in late night Chinese diners, and watched other’s eat countless homemade recipes while I nibble the bread.
As a kid I had two homemade stickers on my lunch box, one said “Money is Great” the other said,  “Food is Good.” I grew up poor and I was raised to eat the food people gave me. “Food is Good,” all food, any food, when you are hungry its not the time to be picky. These days I am hungry all the time. But it’s not food I am hungry for, but flavor. Its not that I don’t eat enough, I do. I eat oatmeal, salmon salads, pho, burgers, and French toast. But my life lacks flavor and more importantly it lacks freedom. So what do I what do I want to eat? I want to eat everything. Now, please pass me the bread.


Sunday, May 6, 2012

Snacking

I love to snack. Sure a great meal is a wonderful and joyous thing to savor, but a snack can be a moment of self indulgent ecstasy. Well, if I had anything good to snack on anything besides a cracker. Snacking with IC is much harder than snacking before IC. Before IC, I would snack on all manner of things sweet and salty. I could eat chocolate, which opened up my world to such delights as the chocolate covered pretzel. When I wanted to be healthier I could eat mango with dried salsa or a small salad with chipotle dressing. A snack was any food that didn't involve actually cooking beyond toasting a tortilla with butter on the stove.
These days I find snacking with IC to be a serious challenge. I have recently started to put on a little weight, not much but enough so that a few dresses and jeans don't fit any longer. So I want to snack healthier. My snacks have been cookies, graham crackers, ice cream, and toast or tortilla. None of these are very healthy. So starting today I am changing things around. My new snacks are going to be, apples, bananas, almonds, cheese, celery, and graham crackers. Hopefully the apples won't aggravate my IC.  Wish me luck people and if you know of any good IC friendly snacks please post them here.

Thursday, April 12, 2012

The Only Flaw My Body Has Is A Defective Bladder

At thirty-five it has become far too easy for me to criticize the curve of my stomach, which is nowhere near flat, the fine lines under my eyes, which weren't there five years ago, or the slope of my breasts, still firm and perky, thank you. However, the more I think about these flaws the more I realize they are imagined. More importantly,  I have come to realize its not me who imagines them but society which pushes this idea of eternal youth and thinness as an ideal. As though voluptuous age is to be feared and avoided at all costs. 

A few weeks ago I went to see "Mirror Mirror," which was an enjoyable film. The villain of the film, the evil stepmother, is a woman who wants to keep her youth and beauty at all costs. To this end, she exploits the resources of the entire town, abuses her underlings, and tries to kill her stepdaughter. I found her oddly sympathetic. Isn't she trying to do what society tells all women to do everyday? Stay thin, stay young, and above all stay attractive to men. The villain of "Mirror Mirror" is a woman trying to do exactly what our modern society wants women to do; and for that she is vilified. 


Now, let us look at our heroine. She's young, she's beautiful, she's physically fit and reasonably clever. And she is rewarded with the love of not just one man, but eight men. It shouldn't be overlooked that Snow White has the love of not just one prince, who falls for her almost on sight because she is that beautiful, but also seven dwarves who each give her the devotion of a lover because she cooked them a decent meal. See, I told you she was reasonably clever. 


What message is this sending? 

It's quite simple, it is the same message society sends to women in every magazine, film, commercial ad, and television show. A woman's worth is measured by her attractiveness to men, and men value youth, beauty, and enough brains to cook a decent pot roast. Where does this leave women who are aging?  Which is all of us. Well it gives us two choices: we can either try to hold on to our youth at all costs and risk becoming ‘vain’ and ‘self-obsessed’ like the 'evil'  stepmother of the fairy tale. Or we can try to grow older gracefully. 

Growing old gracefully is a far bigger challenge than one would think. It means that one must come to terms with the body and how it ages. Wrinkles are going to happen, sagging is going to happen. Yes one should stay out of the sun and go to the gym, but age is a great equalizer. Live long enough and it will get you. In my attempt to accept that I am never going to be twenty-five again (the year my brain attacked me with a stroke, by the way). I have decided to see my own body with the eyes of a lover rather than the eyes of a stranger. I will care for my body the way a lover would. I will coo over the curve of my hips,  purr over the roundness of my belly, and linger the over slope of my breasts, because doing so is a way to show myself love. I will maintain that the only flaw my body really has is a defective bladder. The rest of me is quite beautiful. 

Monday, February 13, 2012

A brief update

So the worst of the break up is over. Tomorrow is Valentines day. Ugh! Its not the lack of man that makes me sad, its the lack of chocolate. I miss chocolate. Real dark chocolate. Haven't had a decent piece in ages. IC, making everything more difficult since 2010. Even an a Hallmark Holiday like Valentines is worse with IC. Which leads me to the real purpose of todays update.

How do I date with IC?

I am thinking of slowly making my way back out there. This time I am going to take things slowly. Very slowly. Like glacier slow. Why? Easy, there is just to much at stake for me. I want to be able to give my heart completely to someone and receive their heart in return. In this most recent break up I foolishly gave up my own heart before I realized I was dating someone who was too afraid to give their own heart to my keeping.
So as I consider dating, I have to think about how do I address the entire IC, medical diet, "no I really can't eat Japanese food without winding up in my doctors office tomorrow"  issue. This is almost as tricky as how to tell a guy I am kinky. Oh readers, I am kinky and perhaps I will discuss that in another post one day. For now, I struggle with the simple issues of how do I date without turning a potential guy off because I am A: Always going to the restroom B: Unable to eat at most restaurants C: subject to random flare ups of a painful disease and finally D: I make use of my states compassionate care laws to medicate with the dried flowers of a plant with known hallucinogenic (and pain relieving) properties.

And I can't eat chocolate.

I don't have answer yet to these questions. Really I am just brain storming here. Getting my worries out before they consume me or more realistically my bladder.

Your truly,
The Goose Girl

Wednesday, January 11, 2012

breaking up

So I was in love..well I am in love. Sadly, my heart has been broken. My love doesn't love me as much as I love him and he has ended our relationship. I miss him terribly. I cry all the time and I can barely get out of bed. As I am unemployed the most I have to do in any day is look for work on-line. So I can in my depression sit here and cry. But this is a blog about IC and not about my love life. Here is what I have learned having IC and going through a break up.
1. I miss chocolate. I don't want to eat anything because I am so damn sad, but I would eat chocolate if I could. So I am faced with the choice, do I give in and eat chocolate and suffer an IC flare up. I am pretty sure a flare up would only make me feel worse.
2. Not eating anything (or barely eating anything) for three days, has some positive effects on my body. One, my bladder doesn't hurt. Probably because aside from water and peppermint tea, it hasn't had to process very much. I've lost about 5 lbs in two days. So my skinny jeans fit.
3. Sadly hardly eating has also resulted in a near chronic headache. I am so weak right now that I can barely focus. So if by this point you are asking why I haven't eaten..simple answer. Food makes me want to vomit. Also I am crying so much that I can barely breathe most of the time, so eating just seems pointless.
4. I haven't had a cigarette since Sunday. If I can keep this up for two more days than I am sure I can officially have quit smoking. Odd to decide to quit in the middle of one of the worst heart breaks of my life, but I haven't craved a cigarette since Sunday.
5. Of course I live in a state with medical cannabis, which is great otherwise I probably wouldn't be able to eat at all and I definitely wouldn't have slept at all. Also the more medicine I take the less I smoke cigarettes, I don't know why this is but it helps me.
6. Dating someone who can't eat dairy when I can't eat anything (in other words, I follow the IC diet and damn that thing is boring) is probably not the best thing in a relationship. We cooked a lot at his place and I made him dairy free shakes along side my vanilla ice cream shakes. But I think it was stressful on the relationship.

Going through a break up is really hard even at the best of times. However, to be 34 nearly 35 years old, separated (and awaiting legal divorce), living with one's mother, and have IC..well not to sound too full of self pity. But its awful. I loved that man so much and I still love him, hopefully tomorrow I will love him a little bit less.

Monday, December 19, 2011

Irony for the IC patient

On Friday I had a Cystoscopy and Hydro-Distention of the bladder. This is a pretty common procedure for IC patients. I think it was my 3rd Cystoscopy and my 2nd HD. Anyways, I got knocked out for the procedure (and got my new IUD inserted too) and when I woke up and finally was lucid I discovered something horrible. I couldn't pee. That's right, here I am with a disease that makes me pee all the time and I couldn't get my bladder to work. Turns out this is potential side effect of the this procedure about which nobody had warned me.
So now we cut to what happens when a woman with IC can't pee. Also known as the ironic twist to this story. I went to urgent care that night and they inserted a catheter to drain my bladder and then they let me rest to see if my bladder would finally work properly. After a good solid hour it became clear that my bladder had, at least temporarily, gone on strike. I couldn't pee. Let me just say that as woman with IC, who often has to pee every hour or more, not being able to pee was even worse than peeing every 10 minutes. The pain was horrible.
The doctors at Urgent Care decided the best thing to do was to insert a foley catheter with a bag so that my bladder could just relax and drain easily. So they inserted this torture device into me and sent me home with instructions to return the following day.
Let me be clear. They sent me home with a bag that would collect my urine. I think now would be the best time to say that I had asked my new boyfriend (of only 2 months) to accompany me to the earlier procedure and to urgent care. We then went home, watched some TV, and went to bed. All while I was "wearing" a bag of my own urine.
This was quite possibly the most embarrassing moment of my entire life.
I barely slept.
The next morning, urgent care removed the catheter and I was able to pee normally. I have never been so happy to pee in all my life.
However, now I have a yeast infection (I believe) because of the antibiotics I had to take after the procedure and which are even more important since I just spent an entire night with a catheter inserted into my urethra.
And that is a summary of the worst night of my IC.

Monday, December 5, 2011

IC and the common cold

So I have IC. It's annoying and painful and it limits the way I live. But I have gotten used to it. No use crying over uneaten chocolate. There is one thing that is really getting to me though. I miss cold medicine. More specifically I miss Psuedophed, Nyquil, and that nasty tasting thera-flu. Now that I have IC all those drugs are on the "no-no" list. They would cause a flare just as soon as they made me feel slightly relieved of my cold symptoms. Then where would I be? I'd be sick, congested, coughing, sneezing, and in the ladies room every ten minutes with constant bladder pain. No thank you. I will take my illnesses one at a time please.

But this leaves me, and everyone else with IC, in a bit of a bind over what to do when we get a cold. Its like I am living in the dark ages. I have been sick now for four days and I think I have found some good coping mechanisms. I am going to share them with you dear readers and if you happen to know any other cold coping strategies please feel free to post them to comments.

1. Hot Tea (Peppermint or Chamomile) I don't know why but hot tea seems to at least make me feel a bit better when I am sick. Plus if I add honey to my tea it coats my sore throat. Since I can't have OTC broth and I am too lazy and currently too sick to make broth for myself, hot tea has become the substitute.

2. Afrin nasal spay. However, one must be aware that this stuff is highly addictive. It can only be used for three days tops if you use it every 12 hours as the dosage instructs. Maybe you can stretch it to 5 days if you only use it at night.  Afrin (and its competing brands) nasal spray is a great drug. I went from severely congested and feeling like I was drowning to breathing freely for about 8 to 10 hours. This is perfect for when I need to sleep. Its also the only decongestant that doesn't make my bladder cry out in pain.

3. Advil. This stuff is great. It brings down fever and it also brings down the inflammation in my nasal passages that restrict my breathing.

4. Dye-free Benadryl. It helps me breathe a bit more easily and makes me sleepy enough that I can rest my way into better health.

5. Go to the Doctor or urgent care and get a prescription for better drugs. I can't take OTC cough medicine but I can take Tessalon Pearls (http://www.medicinenet.com/benzonatate/article.htm).

6. (I can't do this but I know from others that it works) Neti Pots and Nasal Rinse. Flushing out the sinuses really helps alleviate cold symptoms. Its safe for IC patients as its drug free. Its a bit uncomfortable but not painful. Why don't I do it? I am one of the very few people who have ears nose and throat issues that prevent me from using a Neti pot or a nasal rinse. I get water behind my ears when I do it. But I am the exception. Try it for yourself and see if it helps you.

7. Nasal Saline Spray- Like Afrin but not as effective or addictive as its drug free. It keeps your nasal mucus membrane moist and that will help make you feel much better.

8. Rest and push fluids. Really. Don't think you can just "push through". If you have IC then you get sick with a cold its going to make you more likely to flare. Let's face it. Stress makes this disease worse. So when sick, rest and push fluids.

9. Eat simply. Now is not the time to try new foods. In fact the best way I have found to prevent a flare up that can follow a cold is to keep my diet as simple as possible.

10. (because I really wanted list of 10 things) Stay on all my regular IC meds and supplements. Though I when I am sick I add Colostrum to my supplements as it helps booster the immune system and doesn't anger the bladder.

For more information from a trusted source follow this link..http://www.ichelp.org/page.aspx?pid=964

And remember wash your hands frequently, get your flu shot, avoid people who are sick (send them a card or an email telling them you still love them but not their germs), and get lots of rest during the cold and flu season.

I hope you all stay healthy and flare free.

The Goose Girl