Naming My Monster
NAMING MY MONSTER
I'm anxious to share my new Taproot Portrait Sessions with you! I'll go into more detail later this year when I officially launch them, but I can tell you that these half-day sessions will give us the opportunity to explore the love that keeps your family rooted and that nurtures your soul. Taproot Sessions are free of any expectations other than to be present and to soak up the richness of each moment. They have been on my mind for a long time now and I am excited to bring them out into the light.
“And I’ve been thinking, how can I expect my clients to open their lives to me and allow me into their homes and souls without being open about my story first?”
I know that portrait photography can be very exposing. When clients (women in particular) walk in my door I know that they feel insecure and often want to hide their bodies and hide their hearts. They tell me with their words and their actions that they don’t feel like they’re good enough. They’ve let their fears get the best of them. Sometimes they marvel at how I seem to have my life together and my weight in check. This breaks my heart because I feel that somehow I’ve missed out on showing them the real me, the broken, flawed and insecure me. We relate to one another by sharing our stories of brokenness, of healing and of overcoming. I want people to feel beautiful and empowered when they stand in front of my camera. I believe that is possible despite our insecurities and the monsters in our lives. I need to do better.
“Like so many of you, I am ready to tell my story. I don’t really know how to best tell it, but I will tell it nonetheless. I have many fears, insecurities and monsters of my own. But, today I’m going to tell you the story of my greatest monster. ”
My monster is always with me. He keeps himself at the forefront of my mind, controlling every decision that I make, every place I go, every person I see, every thing I eat. He weighs down my every step. I can do nothing without fearing his response to my actions. I don’t remember a time when I was free to wander off on my own and choose my path without him tripping me up and punishing me for it. Freedom has been something that I have thought long and hard about. But, I know that I’m not free and I fear that maybe I never will be free, at least not the way my body and mind long to be. Despite this monster clinging to my feet as I left my home that February evening last year, I attended a weekend long women’s gathering in a friend’s home called the IF Gathering. My anxiety level was soaring as I walked in Adrienne's front door not knowing if I would be safe inside. During the gathering we were encouraged to choose a word that we would focus on for the upcoming year. I chose Freedom, thinking that just maybe I could get a little glimpse of it in the coming year. Every cell in my body called out for Freedom that day.
I can’t remember a day when my body felt free. As a child I was always irritable, itchy and bothered by something. I had daily stomach pains, headaches and fatigue. I have photographs from when I was at least 4 where I am wearing only underwear around the neighborhood because, “my clothes itch me, mommy.” I was told not to think about my ailments and that the more I thought about them the worse they would be. If I didn’t think about them then they didn’t exist. My body was on the defensive and my mind was becoming ever more anxious and troubled about it. It was and continues to be a vicious cycle of physical symptoms and anxiety, each feeding the other. I found a sympathetic ear in the school nurse’s office. I’m surprised she didn’t keep a sign on the bed saying, “reserved for Katie Proto” since I was in there so often. She tried to find answers to my ailments. One question that she often asked me is if I had a BM that day. Well, I had no clue what a BM was and I was too embarrassed to ask. In my family we didn’t have any fancy acronyms for that and just called it what it was,“poopy." I’m sure it was amusing for her as she heard me say each time, “I don’t know, maybe, I think so, I’m not sure.”
Though I found some comfort in my almost daily visits with the school nurse I developed a distrust of doctors early on. I was very skeptical of them and never felt like they were helping me. My first pediatrician was ancient and had the crusty elbows to prove it. And then there was my allergist, Dr. Kern, who told my mom that a bubble surrounding me would be my only hope in life.
“Yep, I should be a “bubble girl.” ”
He diagnosed me with a host of allergies, including milk. Having allergies as a child (and as an adult) is incredibly isolating. Once a teacher rewarded me and a couple of girlfriends for being helpers in her class by taking us all out for pizza. After calling ahead to the pizza shop to ask about their menu, my mom found that the safest thing for me to eat that day was a tuna sandwich. So, there I sat eating my giant overstuffed tuna sandwich reward while everyone else enjoyed their cheese pizza. My mom did her best and followed all of the allergist’s suggestions. She started bubbling me up! She washed and packed up most of my dust collecting stuffed animals and put plastic covers on my pillow and mattress. She removed the mold inhabited plants from our home. As much as my mom tried to protect me, there was no guarantee that I would be safe outside of the walls of my home. And I soon learned that I wasn’t. My grandparents had a house at the Jersey shore and I remember visiting them overnight without my parents. As I lay down to sleep on a cot that my grandmother pulled out from the attic I began to have the first signs of an allergy attack, an itchy chin. I don’t know the science behind that, but that’s what happens. I told my grandmother that the cot smelled like moth balls and that I was having trouble breathing. She did what any loving grandmother would do and invited me to sleep with her. No, she told me it was all in my head and that she didn’t use any moth balls on the cot, though later she admitted to using them in the attic where she stored it! This wasn’t an isolated event. I often broke out in hives or had asthma attacks while away from home. I was told time and time again that this was all just in my head.
I remember being shamed over and over again because of my reactions to food and the environment. Once I was kicked out of Spanish class because I couldn’t stop hiccuping. I’d get the hiccups several times a day and have these funny sounding airy burps that my best friend jokingly referred to as “cat burps." I was quite familiar with the linoleum patterned bathroom floor of our home as I spent many evenings there after dinner doubled over with pain. My monster followed me to college and every night it wrapped its thick, strong hands around my waste and squeezed my ribs and my guts as I lay, trying to sleep. My sophomore year I started dating my husband, Seth Rash. You can bet there were some hilarious comments about that from my family! They made all kinds of jokes about me “having a Rash” and needing to “get rid of my Rash” and of course I would date “a Rash” because I’m always getting rashes and hives and that we should name our first child “Diaper Rash," and on and on! Dating in my family was so much fun! Oh, the stories my sisters and I could tell! My younger brothers got off way too easy.
My pregnancy with Dominic was the last time I remember feeling pretty good. My symptoms eased a bit and I felt a freedom that I hadn’t experienced in a long time. But, who was I kidding, shortly after giving birth I had an allergy attack. The nurses insisted that I wasn’t allergic to anything and that I was having a panic attack. It’s just in my head. I had an awful recovery from Dominic’s birth. I hear stories of how new moms walk to the nursery to see their babies and get themselves all dressed and made up. Nope, not me. I stayed in that bed feeling like I was hit by a bus. The only time I got up was to go to the bathroom and I could barely take the 5 steps to get there on my own. I think I may have taken a shower just before I went home, but I know that there wasn’t much teeth brushing going on during those 3 days. Stinks for all of those who came to visit me in the hospital! And of course, shortly after I got home I broke out in a rash all over my torso, arms and legs. That is how my monster welcomed me to motherhood!
During the next 8 years my symptoms worsened to include acid reflux, stomach pains, itching ears, mouth and face, mouth ulcers, extreme sensitivity to chemicals and perfumes, more food sensitivities and allergies, reoccurring sinus infections, vertigo, daily fatigue, anxiety and the list goes on. There were many days when I could barely get out of bed and many more when I sat crying in the shower and begging God for relief and freedom. You know that shower cry, there’s nothing quite like it! I visited several doctors and specialists and was told by one doctor that I needed deviated septum surgery and by another that I needed acid reflux surgery. I had scares that I had a brain tumor, kidney failure and a host of other illnesses. Doctors have passed me around, wanting to rid themselves of me because they didn’t know what to do. I’ve spent thousands of dollars on MRIs, CAT scans, allergy tests, food sensitivity tests, stool tests, endoscopies and allergy shots.
“And then I found the doctor I have been looking for my whole life, Dr. Helfgott at Parkview Integrative Medicine in Fort Wayne. I waited almost a year to see her and after a handful of visits this past year she has uncovered more than any doctor did in those previous 8 years, let alone my entire life. When I sit with her and tell her my ailments she never dismisses them. She tells me that they are real and they mean something, they’re all clues and together we are going to find answers. ”
The clues have lead her to diagnose me with HIT. Histamine Intolerance is the only diagnosis thus far that has fully made sense to me and that covers all of my symptoms. HIT is an increased sensitivity to histamine. It develops through both increased availability of histamine in the body and decreased activity of the enzymes that break down histamine and remove it from your body. It plays a crucial roll in our immune system and is the key mediator in causing the symptoms of allergy. Thankfully most people tolerate the histamine that they are exposed to. Unfortunately, I’m not one of them.
HIT is a hard illness to explain because it can be unpredictable. For instance, one day I can eat broccoli with little to no symptoms. But, a week later broccoli will cause stomach pains and ulcers in my mouth. Why is that? Well, people like to compare HIT to a bucket. You have this bucket that you are continually filling up (with histamine triggers). Each exposure to a trigger is like another drop in your bucket. Sometimes your bucket is light, sometimes heavy and sometimes it overflows and causes mass destruction. Your bucket can be filled and overflowing in a matter of seconds, or if you’re lucky, a matter of weeks or months. Unfortunately, this bucket is hard to empty and it can take months to bring the contents down to a safe level, that is as long as you don’t encounter any more triggers during that time, which is pretty much impossible!
My triggers are food- too many to list here, perfumes, shampoos, hairspray, deodorants, laundry detergent, hand soap, essential oils, newspapers and books, cigarette and campfire smoke, car/truck fumes, paints, cleaning products and chemicals, nail polish, dust, mold, mildew, plastics, plants, flowers, etc. They cause a variety of symptoms including headaches, fatigue, mouth ulcers, difficulty breathing, chest tightness, anphalaxis, acid reflux, throat pain, sinus pressure and infection, itching, stomach pain, nausea, hives, brain fog, blurry vision, memory loss, poor concentration, anxiety, irritability and more.
I tend to downplay my HIT. I might say something like, “I haven’t been doing really well, it’s a hard time of year for me, but it’s okay. I know it will get better soon.” I’m really not okay. I don’t have a terminal illness, but what I have really sucks. It’s hard, it’s not going away and it’s a daily struggle for me and my family.
“I’ve been hiding the ugliest parts from the people that I love because I feel guilty sharing with them. I feel like sharing will isolate me even more. How do I tell the people I love that they are contributing to my illness? That when I’m around them or in their homes my body is under attack and wants to flee? ”
Unless you have HIT you aren’t going to fully understand, but I want to at least move you a few steps in that direction. So, I’m putting those fears behind me. I’m sharing this monster even if it means that I will somehow hurt someone I love. Maybe that sounds irrational to you and you are wondering how I could think that telling people about my illness can push them away. But, you have to understand that those of us with an illness or disability feel that we are a heavy burden to our family and friends. We feel that we are constantly bringing them down, holding them back. It’s inconvenient for others to develop a relationship with us. And we fear that maybe that inconvenience is too great. So, for my friends who I haven’t let in yet and haven’t yet shared how HIT affects every aspect of my life, this is for you. And for my new HIT friends, I hope that you can find some comfort in knowing that you’re not alone and you always have my ear.
Everyday Life with HIT
What does it feel like to have HIT? I posed this question to a Facebook HIT support group. One man said optimistically, “Well, it isn’t cancer.” But, to my surprise, a woman named Heather, who has survived cancer said,
““It’s like cancer… It eats away at you, your health, your ability to function, your mental state. It causes an array of many other issues that you have to deal with at the same time but it’s all nearly impossible because there’s so little you can do or take to heal…my own body is harming me and won’t allow me to heal properly. And there’s little I can do to really change it.” ”
Several others said it was like having a hangover all the time or that their bodies were at war with the world and they were always on the lookout for when they would be bombed next. My reply to that question is,
“It’s like taking a walk around town and all of the shops and restaurants are filled with people laughing, eating and drinking together. But when you go up to the door it says “No admittance for Kate,” “stay back 50 feet,” or “you’re not welcome here.” It feels like my personal space is constantly invaded and the air around me is toxic. There’s only so much I can do to protect myself. I can control what foods I put into my body and what products I allow in my home, but once I walk out my door or invite someone in I have a giant target strapped to me and I’m no longer safe.”
My diet is extremely inconvenient. I use my oven 3 times a day to roast veggies. I drink only water. At this moment with how I have been feeling lately I don’t have any safe foods that I can just grab and eat. Butternut, Acorn and Spaghetti Squash are my top safe foods. Right now I eat these at every meal including breakfast. Sometimes I can throw in a little chicken, turkey, lamb or I can add another vegetable if I’m feeling well. But, it’s pretty much squash, light olive oil and salt. Left overs are a no-no since histamine multiples in stored or decaying foods and I need to immediately freeze any left over foods to keep them safe. I have stopped eating at restaurants for the time being. I order water and if I want a real treat I order it hot (sarcasm and humor help keep me sane)! I take my own food everywhere I go or I don’t eat. I’m always on edge when I’m invited somewhere new and worry about any triggers that may be waiting there for me. In fact, many times I turn down invitations. It’s a struggle to have people in my home (even though it is better than going out). And I have to always fight against this because I love to host and I’m not going to give it up! But, perfume, body lotion, laundry detergent and shampoo linger in my home and physically affect me for weeks. Because of Seth’s blindness and inability to drive, I do all of the shopping and running around. When I step foot into a store my symptoms flare up. I hold my breath as much as I can when I’m out shopping. But the scents get on my clothes and my hair and I often have to take a shower when I get home. I’ve grown to hate shopping and try to avoid it whenever possible. There are several other activities that my HIT has completely expelled me from, at least for now. I joined a yoga class a while ago to help calm my body and mind and I loved it! But then a new instructor started wearing essential oils and using them in class. I’ve been taking a break from church for a while and since I’m the only driver in my home the rest of my family has as well. I love my church and the people of my church dearly. I just checked out without telling them that it was because being there was making me ill.
“I feel that’s such an awful thing to tell the people that you care about, that being around them makes you sick. Most days I am full of guilt, shame and fear, but certainly not Freedom.”
My Freedom Year Comes to an End
It’s been exactly one year since my “Freedom Year” began. I just hosted an IF Gathering in my own home this past weekend. I went to see Dr. Helfgott this past week to go over test results. What I didn’t mention before was that she had told me earlier this year that I have Histamine Intolerance but that she was still looking for something more and thought that perhaps a bigger, mama monster was still hiding. She told me last week that she thinks she has the diagnosis that I have been wanting. It’s Histamine Intolerance and allergies. She didn’t find anything else. You’d think that I would be happy to hear that, but I was terribly disappointed. I mean, Histamine Intolerance? That’s it? The name sounds so non-threatening. That name doesn’t come close to describing how I feel everyday.
“I want some horrific, ugly, scary named illness that no one can pronounce. One that at least has the word “disease” in it! ”
And, of course I was also hoping for a discovery that would lead to quick and easy healing. I’m not going to get that. My symptoms may improve now that we know how to better prevent and treat them, but this is going to continue to be a lifelong struggle for me.
Just as my Freedom Year came to an end, actually the very same week that it had started a year ago, I have my Freedom. I have my answer to prayer. It’s not the Freedom I expected and it doesn’t feel how I thought it would feel.
“But, Freedom comes in knowing my monster’s name. A year ago I didn’t know it and now I do. ”
I’m calling 2017 my “Light Year”. This is the year that I am calling out what is hidden in the darkness and bringing it into the Light. My monster has been called out by name and it is now in the Light. I am ready to experience the healing and wholeness that comes with that. He doesn’t seem so scary anymore. But I guess that’s what happens when you name your monsters.