Archive for Candice’s Corner

I’m Chronically Infectious. Does it Get Better for Me Too?

// October 20th, 2010 // 3 Comments » // Candice's Corner

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This past September, in the wake of the recent gay teen suicides, writer Dan Savage founded a project that┬áhas miraculouslycaught fire and has begun to sweep our nation. He has dubbed it the “It Gets Better Project“. His aim was to provide lesbian, gay, bisexual and transgender teens with hope for a better future, one where being who you are isn’t so excruciatingly painful, and where happiness isn’t hard to come by. People from across the country have come out to write and make videos to tell their stories and to share how despite the treacherous times that come with being an LGBT youth, and despite the hardship that comes with being part of the LGBT community, they have led successful lives and have found love, support and happiness.

As I follow this project and whole heartedly support it as a straight alliance, a little voice has begun to speak up in the back of my mind. With each video that I watch, each celebrity that speaks out in support, the voice gets louder. I watch the LGBT community grow and the support for the community expand, and as I rejoice, I can’t help but think of the Lyme Disease community. My mind has become pre-occupied by the recent Late Stage Lyme suicides, and the little voice in the back of my mind has begun to shout:

Sue Baiata. George Strobo. Jonalyn Strobo. Bryan Jacobson. Lindsay.

These are the names of the individuals who took their lives in recent months after battling Late Stage Lyme Disease longer than they ever thought they could or would. No one answered that question for them, or handed them a sliver of hope when they started to lose grasp of their own. Out of respect for them and for their battle, I feel the need to speak out. I’ve always said that in order to overcome this horrid disease, one needs a village. The unfortunate reality is that at this point in time, most Lyme patients don’t have much more than a few family members or friends that care for them and the doctor that has diagnosed them. Many aren’t even that lucky.

Much like the doctors who were treating AIDs patients in the beginning of the AIDs epidemic, Chronic Lyme Physicians are under fire for what they believe and for how they treat. Not unlike AIDs patients once were, Lyme patients are mistreated, abused and neglected by most healthcare professionals. The disease is pushed aside, it’s the elephant in the room, and it’s the epidemic that no one wants to acknowledge. The disease is lacking in research, treatment options and treating physicians, and the lyme community lacks acknowledgement and support. Because of this and because of the roller coaster-like nature of the disease, Lyme patients remain ill for years, or even decades. As their world stops spinning and their lives are put on hold, the lives and worlds of their friends and family around them continue on and they are soon left to fight a relentless battle with just a few people by their side. Many face this battle alone.

There has been a trickle of celebrity support this past year, as actress Candice Accola stood up as an activist and a handful of well-known celebrities came together to film Lyme Disease PSAs. The Lyme Community was thrilled about this rare outreach and support, and we were eternally grateful for the compassion and the effort demonstrated by these benevolent celebrities.

But what about hope?

Dan Savage’s “It Gets Better” project was set into effect in hope to provide struggling members of the LGBT community with assurance that life does get easier. He hoped to be able to provide ridiculed, defeated LGBT youth with the ability to imagine a better future, in an effort to prevent future losses of precious lives. I think that in the aftermath of the Lyme Disease related suicides, the Lyme Community needs that to. I know that for us, due to lack of research, funding and treatment options, our futures are in question.

There aren’t any certainties in our battle. There isn’t enough information out there to be sure what the outcome is truly going to be. Will I ever be clear of this disease? Will I achieve remission? Will I be on medication for the rest of my life? Will I be able to hold a full time job? Can I have children? Will my body ever truly function like it once did?

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I don’t know. There is something that I am sure of though. It gets better.

Things have been hard for me lately. I’m on a downward dip in this roller coaster we call Lyme. There have been days where I’ve found myself overwhelmed by symptoms and unable to stand steadily on my own two feet again, where the physical hardship and feeling of defeat slightly outweigh my sense of hope. Deep down though, I still know that it gets better. I want others to hang on to that too. I’m never going to stop fighting, and I don’t want to read about another fellow lyme patient who has ended their battle again either. So I’ve set out to make a list. A list of hope.

Late Stage Lyme Disease: It Gets Better.

1. You will find a doctor that that wants to, and knows how to, help you. I got sick at age 16. For 2 years I went in circles in a conventional HMO medical system where I was passed from doctor to doctor, each one either shrugged their shoulders or implied that somehow I could be causing the malfunction that was taking place inside my own body. The summer before my senior year in high school, I became so ill that I was hospitalized. My heart, digestive tract and liver all showed physical, incontestable evidence of being under dire distress. The doctors were alarmed by my physical condition and finally believed that I was afflicted with a physical illness, but still didn’t know what that illness was, nor did they have the desire to keep trying to figure it out. I was dubbed “chronically ill”, and they sent me home, despite the fact that I was 17 and weighed what I weighed in 5th grade, I couldn’t sleep laying down, I could barely stand up, my digestive system was at a standstill, my blood pressure was 70/40 and my liver enzymes had skyrocketed up into the 300s. By the grace of God, after a whole lot of hardship and physical decline, I ended up in the lap of a lyme literate physician. He wanted to help, but my condition was too complex and I my body was to ill to be able to handle the treatment that we attempted to execute. Eventually, the phrase “you’re one of my sickest patients right now”, or the statement “you’re an incredibly complicated case” became uncomfortably familiar to me, as I continued to decline to the point where I was unable to leave my house at all, shower, sit up properly in a chair, or often even rise from the couch.

5 years and numerous practitioners later though, I find myself with a doctor who gives me hope. When I met him, he looked me in the eye and and said to me, “Believe it or not, I have seen patients even sicker than you are right now, and they are now getting better. You can be a functioning member of society again, and I can help you get there”. It’s been an uphill battle ever since he spoke those words to me, but he hasn’t given up, and neither have I.

You will find a doctor that both acknowledges the magnitude of your sickness and knows how to fix it. It may take an excruciatingly long time to find that doctor, but don’t give up looking. It had been so long that I had begun to think there wasn’t a doctor out there who could fix me, or who would be brave enough to try. I was wrong. I still may not be able to venture out my front door, and I still may be a physical mess, but I am sitting up in a chair and typing to you, and I have hope. Someone will hand you hope too.

2. You will find a treatment that doesn’t just make you sicker. For me, 10 days of flagyl equated to a 10 day stay in the hospital. 3 drops of olive leaf extract lead to a night in the E.R. A full month of Sporanox caused Multiple Chemical Sensitivity so severe that I am now unable to leave my house. Thousands of dollars have been spent on pills, potions and powders that now sit barely touched in my hall closet. I have shopping bags full of 5 years worth of bottles that have just one or two pills missing. I was the patient that couldn’t handle anything. The one who’s digestive tract would come to a screeching halt with one wrong move, the girl that would have seizure-like episodes or erratic vital signs just because one supplement tipped her teacart. I tried to remain hopeful through it all, through each widespread rash, gall bladder attack, skewed blood result, erratic blood pressure reading, or emergency room trip, but deep down I wondered if I’d ever be able to handle treatment. Eventually though, I found the doctor that was able to appease my doubts, and I decided to trust him, and I plunged into a treatment that I am proud to say that I am actually carrying out. It’s not by any means easy, but he found ways to help me make it through the treatment that I require, and we discovered that there are things out there that my unstable body can tolerate.

I may have to go at a snail’s speed, and I may have to take it one drop and one pill at a time, but I’m doing it. Last night I stood in the kitchen, as I poured liquid medication into a glass, and marveled at my dose. 3 years ago I had tried this same medication and could only handle one drop at a time. I now take twenty drops at a time, and no one has to peel me off of the floor twenty minutes later.

3. You will meet others that understand. Yes, most of your friends will move on. You may receive balloons, get-well cards and well wishes for a couple of weeks after your initial diagnosis, but after a few years of being debilitated and continuing to be the missing person at holiday gatherings and social events, the person who’s too sick for visitors or long winded conversations on the telephone, friends move forward. They move forward while you’re stuck in place because it’s only natural, and undeniably inevitable. It isn’t their fault. When old friends do check in with you once in a while, it’s hard to know what to talk about since your life is so drastically different from the “norm”. It’s hard to find a family member or a friend to vent to when you feel like you’re dying, or you’re experiencing symptoms or side effects that sound like they could be from a planet that no one from earth has ever visited. I promise though, that one day, you’ll find someone. You’ll be sitting in a waiting room, waiting to see your doctor, and someone will pull your favorite brand of gluten free crackers out of their purse, or you could be lounging in the I.V. room receiving an intravenous cocktail when you and the patient next to you both break out in the same purple rash. You’ll find people to bond with, and they’ll connect you with other people via email or some social networking website. Before you know it, you’ll find yourself in the midst of a web of support, and people who just “get it”.

At first I was hesitant to put myself out there. I thought that it was odd to connect to perfect strangers over the internet or in the parking lot of my doctor’s office, and start divulging the details of my timultuous life. Eventually though, I got lonely. I needed someone who understood what it was like to be a young adult and have to ask your Mom to help you get to the bathroom, or wash your hair in the kitchen sink. I needed someone to talk to who watched as much television as I did, or who I could swap allergen free recipes with or ideas on how to wrap yourself in a castor oil pack without getting the goo all over the couch. Once I let go of all pre-conceived notions, I found myself engulfed in a community full of the most creative, loving, witty, smart and supportive people that I had ever met, and they just happened to be fighting a fight similar to my own. If you find yourself fighting this same isolating battle, don’t be afraid to reach out.

You’ll find someone who, on a hard day, will sit online and chat with you until your doctor calls you back. You’ll find someone who will text you when they know you’re about to undergo a procedure or receive a treatment, just to tell you that when they did it, they survived. You’ll find yourself a group of friends who don’t think you’re crazy for drinking brownish-green vegetable juice every morning, and who love you and accept you despite the fact that you can’t leave the house without a mask on, and you can’t stand up for more than 10 minutes at a time. You’ll receive cards from friends that know just what to say when things are bad, because they can actually fathom how bad it really is, and they know what “bad” really looks like. If you open yourself up to it, you will find support. You will find that even though you’ve been diagnosed with one of the loneliest diseases that exists, you are not alone.

I know it doesn’t sound like much. I’m not running miles or marathons. I don’t even leave my house. But it got better. And, it will keep getting better. One day I’ll visit the doctor and he’ll give me a positive report. One morning I’ll wake up and find that the medications that were causing heavy herxheimer reactions are now making me feel a little bit better. One day I’ll meet up with a few of these amazing girls that I’ve met, and we’ll go to the beach. I may even meet a boy that sees me through my illness, and loves me despite my battle. Maybe I’ll even get married. And one day, my disease will make it onto the map and there will be adequate research done that will both save lives and improve the quality of the lives of those infected.

It’s as Buddha said, “Nothing is permanent”. I don’t know what my future holds, but I know that it won’t look the same as the present day does now. Things will get better. Sure, I will still face hardship. Yes, I don’t know in what shape or form. All I know is that things will improve. Whether it’s in a small way or an earth shattering way, they always do.

So, I challenge you. If you have a story of hope, extend yourself and share it. Sue Baiata, George Strobo, Jonalyn Strobo, Bryan Jacobson, and Lindsay are a few of the sufferers that could have used it. You may not know it, but by reaching out and opening your hand and heart to deliver a slice of hope and a drop of compassion, you may be saving a life.

I also challenge doctors, medical facilities, and healthcare practitioners not to give up on patients like me. Please don’t turn us away. Don’t accuse us. Don’t abuse us. Please don’t pass us around. Don’t send us packing because you can’t figure us out. Family members and friends of those who are affected by this illness, please don’t walk away because things don’t appear to be getting better. Please don’t get frustrated if we can’t meet your healthy expectations just yet. Don’t lose faith in the fact that we’ll someday be back on our feet and standing by your side again. Maybe Sue, George, Jonalyn, Bryan and Lindsay were not the first ones to give up in their battle. Perhaps, along the way, someone gave up on them first.

Keep fighting. It gets better.

Information on the potential component of neurospychiatric lyme (provided by an informed reader):
Neurological, Cognitive, and Neuropsychiatric Lyme
Dr. Bransfield’s Research on Neurological Infection and the Brain

What To Eat When You Can’t Eat Anything: Allergy Friendly Foodies

// August 23rd, 2010 // 4 Comments » // Candice's Corner

What do you get when you combine organic ground pork, pears, and a bag of roasted pumpkin seeds?

Absolutely nothing.

No, that wasn’t an incredibly lame joke. That was the question that I asked myself as I sat in front of my computer after arriving home from a trip to my lyme literate physician, my new list of “safe and unsafe foods” in hand. I scratched my head as I tried to map out a 4 day rotation diet that excluded all unsafe allergens but only used each of my safe foods once. I desperately wanted to rip the list to shreds and go back to my large book of crossword puzzles, because those puzzles were surely less complicated than the one sitting at my fingertips. As if having Late Stage Lyme Disease alone wasn’t perplexing enough.

Yet, I shook it off and started googling. I googled my little fingers off. I searched a countless number of terms, some of which included “dairy free smoothies”, “eggless breakfast ideas”, and “tomato free soups”. All of which had to also exclude gluten, dairy, soy, sugar, nightshades (tomato, potato, bell peppers, eggplant), most grains, eggs, corn, onion, garlic, chocolate, nuts, fish, and citrus. If one of those ingredients happened to slip into the recipe, I know my taste buds wouldn’t mind but my body would be quite an unhappy camper.

Needless to say, I didn’t come up with much.

So, I started experimenting myself with recipes and ideas, coming up with a few tasty successes here and there that soon became my staples, but also conjured up some pretty awful concoctions. I don’t think my taste buds will ever forget the heaping mass of slime that I called “Coconutty Okra”, or the disaster that I dubbed “Jicama and Parsnip Mashed Fotatoes”, a dish that has left me with absolutely no desire to ever toucha parsnip again.

Then one afternoon, after I was nearly googled out, I struck gold. I had set out to search for some recipes for turnips, since after my parsnip experience I was determined to never mash a root vegetable again. This time, I decided to type nearly all of my food allergies into the search along with the word “turnip”. I didn’t think I’d come up with anything, but to my surprise, “Affairs of Living” popped up onto my screen.

After leafing through Kim’s delectable gluten free, corn free, soy free, egg free, yeast free, citrus free, tomato free, potato free, peanut free sugar free recipes, I then explored her blog roll and came across a few other chefs that catered to folks like me. I explored their blog rolls, and before I knew it I had a collection of recipes that could not only be tweaked to work for my needs, but sparked the creative chef that resided somewhere inside of me (way, way deep inside, most likely). As I showcase some these newly discovered allergy friendly foodies, I’ll share a few of the treasures that I discovered on their blogs, in hope to help someone else who may have the “What to Eat When You Can’t Eat Anything” blues too.

Affairs of Living

Kim is a kickass cook. She also happens to be a lyme patient too, who I find to be incredibly inspiring in her journey to heal naturally and eat for wellness. Aside from her recipes being nutrient dense and free of gluten, corn, soy, egg, yeast, citrus, tomato, potato, peanuts and sugar, she’s recently gone grain-free for health, and it’s been pretty fascinating to see both her physical results and the resulting recipes that pop out of her kitchen.

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Turnip and Carrot Fries Recipe

Now turnips don’t usually thrill me, but I was excited to come across this recipe. My previous root vegetable trial and error had me sort of scarred, but Kim has officially turned my “augh, turnips” turned into “yay, turnips!”. Being nightshade free (that means no white potatoes) left me relying heavily on sweet potatoes, but after roasting turnips I’ve officially been cured of my sweet potato monotony. Funny thing is, I haven’t even roasted them with the crust yet! I plan to coat them in pumpkin seeds tomorrow night and have myself some potato free fries.

Diets Dessert n Dogs

Ricki rocks. This woman wears a lot of hats, but wears an apron along with them. Her recipes are primarily geared toward the anti-candida diet, but she’s also vegan and caters to those who are gluten free. Pretty perfect for a good majority of lyme patients, right? It also doesn’t hurt that Ricki is exceptionally kind and will answer yourquestions about how to solve your seemingly impossible ingredient issues when trying to recreate one of her recipes. When I contacted her wondering how I could make this recipe work for me, since I can’t do most of the grains on the lists, she let me in on a little secret…coconut flour can be used as a “List C” ingredient!

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Pick Your Own Pancakes Recipes

THE ultimate pancake recipe for someone who is allergic to more foods than they can count on all ten fingers. With this recipe you can pick yourown flours and ingredients off of her carefully categorized lists to create a tailored pancake recipe that suits you and your needs. Pretty brilliant, if you ask me.

Simply Sugar and Gluten Free

Amy has quite an inspiring story. She struggled with weight issues for nearly her entire life before making the connection between allergies and sensitivities and her difficulties with food. By admirably dedicating herself to eating both gluten and sugar free, she not only achieved and maintained a 60 pound weight loss, but discovered a newfound passion and sense of peace and balance.

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Gluten Free Socca

After coming across Ricki’s recipe, I was really in the mood for pancakes. I hadn’t figured out the logistics of her recipe yet though, since figuring out what to use for baking powder and such is a tad complicated in my case. In the meantime, while I sorted things out, I needed something to satisfy my pancake desire. This is when I discovered Amy’s recipe for ratatouille and Socca. I nearly scrolled by the recipe because I knew the ratatouille probably wouldn’t work for me since I’m nightshade free (but it’s a beautiful recipe for someone who is gluten, dairy, sugar free, and vegan!), but I was curious as to what on earth “Socca” could be. It sounded like it could be the singular form of “socks”, but to my surprise, Socca is a big chickpea pancake! I was delighted to discover this, because not only was the recipe simple and the ingredient list concise, it was free of all of my many allergens.

Elana’s Pantry

Elana’s history is an eclectic one, one that I find myself a tinge envious of! It ranges from studying ayurvedic cooking to running an environmental consulting firm. It wasn’t until she and her son were diagnosed with Celiac disease though that she ventured into the world of gluten free cooking. Her recipes have been such a success that she continued on to write a well known cookbook, “The Gluten Free Almond Flour Cookbook”. Since she therefore primarily cooks with almond flour, you will find that most of her recipes are grain free as well as gluten free, dairy free, sugar free, and soy free.

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Apricot Butter

So at this point, I felt like I was definitely set in the pancake realm, but I soon realized that I had nothing to put on my potential pancake-type creations. I definitely couldn’t use maple syrup, at a whopping 50 grams of sugar per tablespoon, and I couldn’t quite use store bought jellies and jams due to both their sugar content and tendency to sneak in ingredients derived from corn. Upon a little searching, I discovered a delectable solution: Elana’s apricot butter. I’m going to use lactose/casein free Ghee to make it, and see if it works with fresh apricots rather than dried. I have an inkling that I’m going to be tempted to just dig into it with a spoon.

Hope For Healing

Though Stephanie is not a lyme patient, her story is a bit similar to my own. At 22 years old, just one year older than myself, she found herself in such bad condition digestively that doctors spoke of invasive tests and drastic surgeries. She decided instead to take matters into her own hands and eliminated gluten, dairy, sugar and soy from her diet. Her health improved leaps and bounds. She is now a Holistic Health Counselor and guides people who find themselves in situations like the one she once knew. I hope that someday my story ends as similar to hers as it began! It’s a dream of mine to be able to heal, then turn around help others follow in my footsteps.

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Leftover Brown Rice Porridge

Stephanie’s leftover brown rice recipe is the recipe behind what I eat for breakfast every day. I can’t exactly use almond milk and agave syrup like her enticing recipe calls for, but her recipe is what ignited the lightbulb in my bewildered brain. After walking away from my doctor’s office and realizing that I could no longer rely on my packaged brown rice hot cereal every day, I was grasping for ideas on what else on earth I could possibly eat. Thanks to Stephanie and her brilliant yet delightfully easy Leftover Brown Rice Porridge, I now keep a tupperware of brown rice and a tupperware of wild rice in the fridge so I can create all sorts of delicious leftover rice hot cereals. I even created a recipe of my own. Thanks Stephanie!

I want to thank all of these food allergy friendly bloggers for their hard work and willingness to share their kitchen creations. I know that it takes a whole lot of time and effort to come up with these recipes, experiment with the dishes, and then turn around and write about the results. The efforts definitely don’t go unappreciated though, especially by people like myself. When you have a complicated, disabling chronic disease that is affected so dramatically by the food that you choose to consume, things can become quite overwhelming. It’s hard to find both the physical capacity and the brain power to resist just laying on the couch and munching on popcorn and potato chips. I know though that doing so will just make me feel a whole world worse and feed the very disease that has taken hold of my ever-so allergic body. In fact, it’d probably even send me straight to the emergency room. It’s bloggers like you though that inspire patients like us to accept that fact and forge ahead, spatula in one hand and pill bottle in the other.

I hope this post also inspires some patients who have been told to go gluten free or allergen free to go ahead and take the plunge. I know it may feel as though your legs are as jelly-like as your apricot jam, and that you may collapse into a heap as flat as a pancake, but if I can do it in all of my dysfunctional glory, I bet you can too. These food allergy friend foodies and I will be here to cheer you on.

Candice’s 25 Reasons Why Being a Lyme Patient Automatically Makes You a Badass

// July 30th, 2010 // 16 Comments » // Candice's Corner

P1000637.JPGEvery once in a while I pause for a moment, take a step back, and look around me. After 5 years of illness and 3 years of living the life of a Late Stage Lyme patient, the routine that I call “life” has come to be so familiar that I don’t often stop to think about how obscure it may seem to an outsider looking in. A few days ago, after arriving home from my weekly 6 hour jaunt to the doctor, I found myself unloading my bag of over 25 medications and supplements onto my designated medicine shelf in the kitchen. My eye caught a glimpse of one of the ingredient labels, which boldly asserted that whatever supplement it happened to be was a proprietary blend of bovine liver and ovine spleen, amongst other typically repulsive ingredients. Another sported a bright red label warning that it caused severe drowsiness and the user should not operate any heavy machinery, and that it may or may not cause kidney related complications. I didn’t even blink.

When I was finished unloading, I stepped back and peered around my kitchen. There were medications strewn all over the counters, and a cabinet sitting in front of me specially constructed to shelf my many bottles of pills. Purple “seizure-proof” glasses sat beside an overused blender on the counter, a spot that was often shared with a vegetable juicer. I knew the fridge beside me housed more produce than most people use in 3 months, and the cupboards around me were full of products all stamped with “gluten free” labels. Most folks my age would now run off to call up their friends to see if they wanted to meet up after class for a yogurt and a chat session. Me, I needed to lay down on the couch before I got back up to make a pot of Quinoa. It’s been over 10 months since I’ve been able to leave the house to do anything besides go to the doctor. I shook my head as I sunk into the couch,
absorbing all of this. I sighed. “My life is weird.”

At this point, I could have had a pity party. Instead though, I smiled. I thought about how cool some of my experiences have been, despite how weird they truly are, and how proud I’ve been of myself for making it through some of the outlandish, yet astonishingly horrific things that have happened to me and to my body. I decided that this all doesn’t make me weird. I think it makes me a badass.

One of the coolest (and possibly weirdest, to some) things about this disease is that it has lead me to meet other patients from around the country that are fighting their own off-the-wall, but intensely treacherous battles themselves. I’ve heard some pretty harrowing stories that have left me reeling in both astonishment and admiration. Lyme patients are pretty badass.

While laying on the couch, reflecting on my journey thus far, I began compiling a list that illustrates why.

25 Reasons Why Being a Lyme Patient May Automatically Make You a Badass4843954771_bc569b2265_m

1. While some people have a comic book collection or collect rare stamps, you collect infections, and happen to have more than a loaded petri dish.
2. You take more than 55 pills in one day, and can swallow 6-10 at one time.
3. When you fill out a “symptom survey” at the doctor’s office, you begrudgingly check off 47 of the 60 symptoms listed. If you were being completely honest with yourself, you’d probably check off 52.
4. You’ve opted to have a portacatheter surgically placed in your chest…while you were awake.
5. You’ve given so much blood at one given time that the nurse had to switch veins because the one in use “dried up”.
6. A surgeon has said “Oops” while performing surgery on you…and you were awake to hear it.
7. You’ve swallowed a camera, drank radioactive dye or have been injected with something that temporarily made you glow.
8. It has been proven that your stomach attempts to digest backwards, and food magically travels upward rather than down.
9. You’ve been able to fill an entire day with meals despite having more food allergies than you can count on your fingers and toes….and your Mom’s fingers and toes.
10. You’ve peed just about every color of the rainbow, except blue.
11. You’ve juiced more than 7 vegetables at a time, and drank it. You have the tomato seeds on your ceiling to prove it.
12. Your spleen and/or liver has blown up, much like an inflated balloon.
13. Most girls don’t leave the house without making sure their lip gloss is safely tucked into their purse. In your purse, you’ve got an epipen resting next to your lip balm and a mask folded up by your sunglasses.
14. Your liver enzymes have elevated to 10 times what was considered within the “normal” range, and you never once puked.
15. You’ve had a head to toe rash which elicited a “whoa” from a doctor.
16. You’ve been diagnosed with a condition that nurses actually have to ask you how to spell.
17. You followed orders without question when you were told to shoot ozone in places where you never imagined it’d belong, or when you were informed to use coffee in a way that is rather unconventional, to say the least.
18. You find yourself tapping your finger to the beat of your heart palpitations.
19. You’ve had injections of liquid thicker than maple syrup shot into your stomach, thigh, lower back, or in regions you’d rather not disclose, and you didn’t even cry…or receive a lollypop.
20. You’ve blacked out in the bathtub or in the shower, and you didn’t drown.
21. You had your first colonoscopy before your grandparents had their first colonoscopy.
22. You’ve had an IV bag full of something that an average person would never even consider injecting into their veins, nor will they ever have to.
23. While watching Grey’s Anatomy, you realize that you have the same blood pressure as the patient who’s excessively bleeding on the screen.
24. Your heart rate has either been half of what it should be, or double what’s considered safe, but you still managed to get up and make lunch.
25. You’ve been sick every day of your life for more than 4 years and still manage to be optimistic enough, and brave enough, to wake up every morning and do it all again.

So if you ever find yourself feeling like an outcast, or “weird”, or as though your life belongs in a sci-fi movie, just remember that what you endure and the way that you have to live your life makes you both strong and courageous. And if you ever start to feel scared or unsure if you’re able to do this, just remember that you’re a badass, and that you can.

Candice’s “ABCs of Gluten Free”

// July 15th, 2010 // 1 Comment » // Candice's Corner

dsc_8204brownies“I could come visit you and we could bake those double chocolate chip brownies like we used to!”

My good friend from high school gushed, as we caught up over a facebook chat. It’s not often that I find myself chatting with old friends, since my life has gone in a completely different direction that seems to be rather unfathomable to most of my 21 year old peers. Not many folks my age are chilling on the couch all day, wearing dark purple “seizure-proof” glasses, munching on rice cakes and popping fistfuls of funky smelling pills. I usually don’t even bother talking about my life much, and usually just play the role of the interested listener. This time though, I felt the need to mention that if she ever did come to visit me, we probably wouldn’t be baking any gooey, doughy treats, unless she planned to eat the dozen all on her own. I chose to not even mention the part about needing to practically fumigate herself before she set foot in my house. Best to keep it simple at first. One issue at a time.

“Umm…I….Well….”

I quickly wracked my brain for a simple explanation of why I couldn’t indulge in the foods we used to consume in mass quantities, or why she probably wouldn’t have any desire to eat the food in my refrigerator at all.

“Do you know what it means to be Gluten Free?”

There was a momentary pause in the conversation. As I waited for a response, I wondered if she had already ventured over to “ask Jeeves” what I was talking about.

“Oh yea, that girl from Survivor that’s on The View now, Elizabeth, she’s Gluten Free. You can’t have wheat.” She paused again as I sighed in relief. I was about to type an affirmative response but her fingers moved quicker than mine. “I don’t think those brownies were wheat anyway though. They were probably white flour, so you’re good.” I sighed again, this time in exasperation.

I don’t blame her for her lack of expertise on the subject. In fact, before I got sick, I had no idea that there were people out there living the life that I now find myself living today. I mean, let’s face it, for lack of a better word, my life is whacked. I haven’t been well enough to venture outside of my house in almost 11 months. There’s a cabinet of pills in my kitchen and an ozone generator in my hall closet. My wardrobe consists of mismatched pajamas, ugg boots, and a vast array of eyewear. Most nights the front rooms in the house smell faintly of steamed broccoli, not to mention that due to my unique choice in moisturizer, I myself smell like a walking, talking coconut.

Gluten is a hard concept to wrap your brain around though. It’s often hard for some who are even gluten free themselves. It’s a lifestyle change that is so incredibly crucial, but terribly hard to adjust to. It’s hard enough to get over that hump, you know, where you’re craving a piece of toast or a few homemade croutons in your salad, but throw in family and friends scrutinizing your new meal plan, it’s enough to make you want to run down to the local donut shop and throw in the towel. Unfortunately, those of us who are motivated to cheat never see the benefit from the diet and continue to damage ourselves, just for the sake of dining with others or indulging in a split second of taste bud heaven. So, I thought I’d put together a little “ABCs” of being Gluten Free, that may explain to those around us why we have to eat the way we do. Maybe it’ll even motivate you guys out there who have just been told to go gluten free, and don’t quite understand why just yet, or those of you who are supposed to be gluten free but find yourselves sneaking bowls of frosted flakes in the middle of the night.

abcThe ABCs of Gluten Free

A bite of your cookie sounds tempting, but unfortunately the aftermath of just one bite would be quite unpleasant and something that you probably don’t want to stick around for.

Barley, wheat, oats, rye, kamut, and spelt are all grains that contain gluten. Unfortunately, they’re sneaky little boogers that hide in everything. It’s not just limited to pasta, cereal, and baked goods. Once you go gluten free, you also get a badge and an honorary title of “Label Detective”.

Celiacs aren’t the only ones out there that are allergic to, or damaged by, gluten. Studies are finding that gluten allergies and sensitivities come in all sorts of shapes and forms in many people who are either immune suppressed or have autoimmune disorders. Gluten just furthers the damage.

Digestive woes aren’t the sole symptoms that go along with gluten related issues. After having a bit of gluten, I could experience throat swelling, breathing difficulty, migraines, widespread pain, immune issues, bladder disfunction, dizziness, and heart rate issues, for up to two weeks.

Eating something that is labeled gluten free, or that I prepared myself, is always safest for me. Though I do appreciate that you made extra tuna noodle casserole!

Food that’s labeled gluten free doesn’t automatically mean that it tastes like cardboard. Okay, some gluten free food tastes a bit like cement. But so goes fruitcake, and that has gluten.

Gluten free products aren’t always safe, since it depends on the person’s additional allergies or limitations. For example, I’d love a gluten free cupcake, but can’t do the sugar. So, a basket of gluten free muffins might not always be the best housewarming gift when visiting a gluten free household. You just never know!

Having your meal or your dessert in front of me doesn’t make me sad or envious. I’d rather you sit and eat around me as you normally would, since this has become second nature for me. Getting up and walking away every time you’re hungry just makes me feel plain awkward.

In place of things like sandwich bread, cheerios, and spaghetti, I can eat things made out of brown rice. It’s not bad, I promise.

Joining you for dinner doesn’t have to be a disaster. I don’t mind bringing my own food. Eating with you doesn’t necessarily mean our plates have to match. I just like your company.

Knives that got put away after cutting your loaf of french bread can’t be used to cut my sweet potato. I’ll use a knife from the dishwasher, thanks.

Life now may be a little more complicated, but it doesn’t suck. What sucked was feeling like my stomach was going to implode every day before I even finished breakfast. I’ll take the tradeoff.

Most fruits and veggies are safe for me, so if you really want to bring me an edible gift, stick the the produce department. It may seem boring to you, but I find a perfect pear to be kind of exciting.

Now that my immune system doesn’t function properly and my body is in a weakened state, my system can’t process, absorb and filter things as everyone else’s can. It doesn’t have the capacity to right now. Instead of dealing with toxins or allergens like gluten as your body might, my body has an allergic response to them, and is sent into a confused, autoimmune, inflammatory frenzy.

On the rare occasion that gluten or a problematic substance does sneak its way in then, energy that should be spent keeping my blood pressure up, digesting and absorbing food, or fighting off disease, is instead spent fighting inflammation, allergens, and my very own immune system. This allows for symptoms to flare and bacteria and viruses to take free reign while my immune system is rather…distracted.

People that have issues with gluten often have malabsorption, which means that while they consumed gluten for years before going gluten free, the intestinal damage prevented them from absorbing food properly. So their weight issues don’t have anything to do with how much or how little they eat.

Quinoa is a gluten free grain. With a really funny name.

Rice, beans and peas may not look appetizing to you, but to me it’s pretty delicious, and it’s my lunch, so make your “eww…peas” face where I can’t see you.

Since going gluten free, my stomach function has improved, my bladder madness has calmed down, my weight issues have gotten better, my bloodwork looks better, my liver and gall bladder are happier, my headaches are completely gone, and I look a bit less like a starving ethiopian child. Once you go gluten free, you’ll never go back!

The diet took time and patience at first, both with my body and myself. It took a few months to see improvements, but as time continues to pass, my body continues to repair. I don’t want to muss it all up just for a burrito from the taqueria down the street!

Unless you’ve tried it, don’t knock it. That even goes for wrinkly things like dates.

Venture into my world for a second and educate yourself. I’d appreciate it more than you know, and perhaps you’ll even learn something that pertains to you. Google is a beautiful thing!

Wheat free doesn’t necessarily mean gluten free. Products that are wheat free could still contain barley, oats, or rye.

X is an obnoxious letter.

You may not be able to take me to a restaurant, but it’s just as fun to come over and cook dinner with me. Who knows if the chef back there washed their hands anyway.

Zany as my diet may be, I wouldn’t change it for the world. It’s such a critical key in my path to health. It’s also taught me lessons that I find to be invaluable. I’ve learned how to properly treat my body, I’ve learned to eat to live instead of live to eat, and I’ve learned to value the company of good friends and family around the dinner table, rather than the dinner itself. Gluten free is definitely for me.

There’s Hope ~Candice, with some help from India.Arie

// July 11th, 2010 // 1 Comment » // Candice's Corner

“from the back country of Brazil
I met a young brother that made me feel
that I could accomplish anything
you see just like me he wanted to sing
he had no windows and no doors
he lived a simple life and was extremely poor
on top of all of that he had no eye-sight
but that didn’t keep him from seeing the light”

As a 21 year old girl who always had high hopes and big goals, who worked hard for everything she was and had, I sometimes find myself feeling like a caged bird. I get antsy, impatient, restless, and down about the conditions of my life and my body. This doesn’t happen too frequently, but is usually triggered by a step backwards or an extra hurdle thrown into my path. Something momentarily steps in front of me in the long tunnel I’m traveling down and blocks the light that I can usually see shining at the end.

I’m sure it’s completely natural for someone to feel this way, especially if they’ve been unable to set foot outside of their house for months, or if for years each day’s been filled with an array of suffering or physical hardship. Yet, after I allow myself to be down for a little while, I then open my eyes to realize that I am in fact blessed, and this is not a cage that I am residing in. During this brief season in my life, I’m wrapped in a cocoon. During this season, I’m fighting a battle, yet I’m also learning lessons that not many are fortunate enough to learn in their entire lifetime. You see, when you are cocooned as I am, you must learn to find happiness and satisfaction in the small things that exist in your parameters. You must blind yourself to all that is passing by outside, and focus on what’s going on inside. You must find joy in celebrating small triumphs, and be filled with gratitude for occurrences that may seem miniscule to those who live in a world less confined. After learning these challenging yet invaluable lessons, and allowing them to transform and change who you used to be, you’ll find that within your cocoon you’ve become someone new. I know that one day, when I’m strong and healthy enough, I’ll be able to venture outside of my cocoon and will emerge as a new, enlightened version of myself, the person who I was meant to be. Almost as though a butterfly would.

Not much will seem hard after this. Nothing will be as earth-shattering as this. Everything will be a blessing. The small things will be beautiful. The big things will be incredible. Every day will be bright. Nothing, not one thing, will be taken for granted. If I can go to sleep at night confident that I will wake up in the morning, and awaken the next day feeling healthy and free of pain, able to walk, breathe and stand on my own two feet, then each and every day will be a good day.

Though I will have had to suffer immensely to get there, I feel blessed to be able to live a life as rich as this. Not many have had experiences in their lifetime that truly open their eyes in this way. For most, what they have is never enough, and nearly all of what they have is taken for granted. Not many people can wake up smiling just because for that very moment they can breathe, or because that very day may be a day that they are able to rise from bed. Me, I’m grateful. I’m optimistic, I can see the light at the end of the tunnel, and I have hope.

“back when I had a little
I thought that I needed a lot
a little was overrated
but a lot was a little too complicated
see, zero didn’t satisfy me
a million didn’t make me happy
that’s when I learned the lesson
that it’s all about your perception
hey, are you a pauper or a superstar
so you act, so you feel, so you are
it ain’t about the size of your car
it’s about the size of the faith in your heart”

Original Post with Embedded Video