My Story

Ok. You’ve made it to the dreaded My Story page. Somehow you have been conned into thinking you have an interest in my story. It’s a pretty long one and may not be for everyone. I figured that it might really help someone though who could be going through something similar. Here goes.

I’ve seen more doctors than anyone I have ever known. Countless appointments. I tried ordering my medical record once from my primary care facility and they opted to only send me the previous two years, because that’s all they could stuff into the single standard manilla envelope. I called them and they didn’t seem to think it was necessary for me to have all the documents I requested.

My life in ignorance

I always had unexplained problems growing up. In grade school I would complain of stomach pains and have to go home many days after lunch. For a brief period my doctor did switch me from drinking cow’s milk to soy milk. No improvement was seen so that idea was abandoned.

In middle school I had terrible eczema. It formed in rings and looked identical to ringworm. I had huge, 1 to 3-inch red, scabby rings all over my legs. One doctor told me and my Dad it was flea bites.

I had terrible canker sores both in and outside my mouth. At it’s worst I had 5 on my face and 18 inside my mouth. My doctors didn’t seem to think this was anything to be worried about.

In high school I would get this incredible wrist and back pain. I remember being so tired one night, but I couldn’t sit or lay down because my back hurt so badly. I just stood for hours on end before crying myself to sleep.

I had pretty bad acne on my face, my gums would always bleed, and I got incredibly bloated after eating. I was constantly somewhere between diarrhea and constipation, gassy, belching, and I would get headaches and feel like I was in a fog and couldn’t think or reason clearly. I had terrible insomnia, constant ringing in my ears, and also felt really anxious and super awkward in social settings. I developed exercise-induced asthma and had to use an inhaler. I always had sensitive skin and couldn’t use any scented laundry detergent. When I was 14 the scent of perfume seemed to change. I had around thirty bottles of perfume that I thought smelled wonderful. Then one day they started smelling like the chemical slurries that they were.

After high school I got a job driving a combine (harvesting grass seed) for the summer. I had doctors appointments regarding my acne, as well as strange red bumps on my toes. I ended up going to my primary care doctor, a dermatologist, and then a foot doctor for the bumps. The foot doctor told me he had never seen anything like it in his 20-odd years in his profession. He wanted to order a biopsy at a later date. I became discouraged by yet another failed appointment and never followed up with the biopsy.

Then I went to college

It was fall of 2006 and I had just arrived in Lubbock, Texas, on the campus of Texas Tech University with a partial scholarship for clarinet performance. This was the first time I had ever really been alone and on my own in a new place. I was living in the dorms and my roommate was completely absent (I saw her a total of three times that year). I had to get there for early registration since I was from out of state, and so I would be there all alone for the next few days before the official welcome week. I was so afraid to go outside that I subsisted on my box of Parmesan Cheez-it brand crackers for two or three days until the food services started up in the dormitory.

After a rough first few days adjusting, I had better luck. I knew only two other souls in Texas. A colleague who I had attended high school with and his girlfriend. My colleague’s girlfriend was incredibly nice and invited me to a few outings with her friends. Things were shaping up.

I eventually adjusted to my new life and everything was going well. I was making friends and doing well in my classes. But only for one month.

Then I got mono

I tested positive for mono and it was pretty bad. I was feeling sick from it for about 4 months. My doctor told me that if I wasn’t feeling better once I returned to school after winter break to come see her. After I got back to school from being in Oregon for a few weeks on break, I felt even worse than before. She tested me for mono again. And I tested positive again. My doctor told me that mono “reactivates” in about 5% of people who have had it.

I was really, really sick this time. I couldn’t even hold up the hair dryer for five minutes to dry my hair. I couldn’t stand up for long, let alone walk to class. I was also extremely dehydrated most of the time and had severe tonsillitis. I lost 20-30 pounds. My doctor had me come in every day to make sure I didn’t need to be hospitalized (my airway was almost completely blocked). One night I was in excruciating pain and I could see an incredible amount of distention in my torso. I thought my appendix was rupturing. My doctor had warned me that my appendix felt swollen, and if I thought it was in trouble, to go to the emergency room. I called my best friend sometime around 2am in a panic. She told me she was picking me up and driving me to the hospital.

After waiting a long time and then running lots of tests for hours and getting an IV, a doctor with a terrible bedside manor told me that there was “nothing wrong” with me, and inquired why I came into the E.R. in the first place.

I ended up getting a medical withdrawal for my most time-consuming classes. My doctor thought I should withdraw completely, but I refused to give up. She told me I might start feeling better by the time next fall rolled around. She advised me not to work or go to school for the rest of the semester and entire summer.

Cut to: the introduction to the word gluten

My dad had been researching online and found out about this thing we eat, called gluten. He had read that people could be intolerant to gluten. I was skeptical. He told me to look it up and read the symptoms. The descriptions of the disease sounded like they were describing me.

Three days after going gluten free: perfect skin. The girls face which was once riddled with acne, now gone. Amazing, radiant, glowing skin in its place. Headaches and brain fog: also gone. Canker sores: gone. Insomnia: gone. My doctor had actually prescribed me quite a lot of Vicodin the year I was in Texas because I was in such pain and couldn’t sleep at night. It was after this initial gluten-finding that I would start my journey of finding out what else I was intolerant to.

I ended up recovering from the mono a lot quicker than expected (now gluten free), and worked driving combine again for the summer. I decided not to go back to school in Texas in the fall for various reasons. I worked part time at a retail job while taking classes at the community college in my hometown.

I tried seeing more doctors in an effort to find out what else was wrong with me. After going gluten free, I felt great initially, but then other symptoms started cropping up. I was getting a different type of rash that I’d never experienced before that covered my entire body, I would have a constant stabbing pain in my left side near the bottom of my ribs. I would get headaches again and feel like I was in a fog. Not exactly like how I felt from eating gluten, but similar.

Naturopathic Medicine

My doctors office refused to believe anything was wrong with me, so I went to a naturopath in town and paid for it out of pocket. I am double-covered on my primary care doctor. I don’t even pay for prescriptions or co-pays. Too bad they aren’t interested in finding out what’s wrong with me.

The first naturopath doctor I saw was great. She seemed interested in finding out what was causing my issues, and tested me for various ailments. Tests confirmed the intolerances: coffee, dairy, banana, pineapple, and almond. I had also determined through elimination diets that I could not tolerate: gluten, soy, and cane sugar. This naturopath was just a stand-in while the usual N.D. was on maternity leave. When the N.D. who had been on maternity leave came back, all hope was lost. She told me it was impossible to be intolerant to rice. She took me off all foods to only drink these rice shakes three times per day in an attempt to ease my stomach issues (I was having terrible diarrhea with blood). About a year later and I pin-pointed yet more I could not have: corn, potatoes, and rice. Thanks, doc.

These new restrictions worked for me for a while. And then it all started going down the drain.

Alcohol

I was a typical college student. I liked going to parties and drinking. And I will admit that I was binge drinking (I definitely do not condone that practice). I would always binge drink and wake up the next morning looking and feeling incredibly refreshed. I didn’t understand why people got hangovers.

Then in 2008 this strange thing started happening. I went to a party where I drank a lot of cheap wine. Woke up the next day, was fine, went to work at my retail job in the afternoon no problem. Then around 7pm, I got this incredible pain in my head. A pain so debilitating, I could have never fathomed it’s existence. It was throbbing and squeezing, like my skull had shrunk down too small for my brain. I felt incredibly nauseous and had tunnel vision. I felt like I was panicking and couldn’t breath. This lasted until the next morning.

It started with wine, so I switched to vodka. Then after about a year it was happening with vodka, so I switched to cider. Then I had to switch to tequila….you get the idea. It just kept intensifying. The duration, quality, frequency and sensitivity were all intensifying. I am so sensitive now that if I smell alcohol, I will get sick. If I were to have a taste, I would be sick in bed with that unrelenting headache for at least 3 days. Then I would experience extreme nausea and depression for at least a week after the worst of the headache subsided.

More Doctors

In 2009 I got a referral for a gastro intestinal doctor because I was missing a lot of class. I either couldn’t leave the bathroom at home, or I was constantly running to the bathroom right before/during class, making me late and disrupting the whole class. I told my GI doctor that this was severely impacting my life and I needed help. He asked me about my diet. I had only told him that I couldn’t eat gluten when his stern disbelief set in. He offered all these scenarios to me in which my friends all went to a pizza parlor or sandwich shop. Then he would ask me in a condescending tone, “You are really telling me that if all your friends were eating pizza, you wouldn’t eat any?” He couldn’t get over this fact. He obviously thought I was lying. He couldn’t have made that any clearer. He sent me home and told me that he didn’t see that there was anything he could do for me.

That same year I had a sigmoidoscopy. I did all the prep for it and the doctors administering the test didn’t believe me. It looked like I didn’t even try—my bowels had not been cleaned out. I asked them and my primary care doctor repeatedly if that was normal (because it they brought it up, it obviously wasn’t). They just kept assuring me that nothing was wrong with me.

This sensitization, like what happened with the alcohol, happened with a lot of things. I will spare you all of the long details, but I can no longer tolerate make-up, most personal care products, deodorant, toothpaste, perfumes, shampoos, soaps, laundry detergent, dish washing liquid, and even my list of safe foods is dwindling down. Oh and that reaction I get from alcohol? Apply that to all types of sweetener as well, even fruit juice and date sugar. It happened the exact same way too, with me systematically having to eliminate types of sugars. I have tried and become extremely ill when ingesting even a minute amount of any of the following: cane sugar, beet sugar, yacon syrup, fruit juice, fructose, honey, maple syrup, xylitol, dates, raisins, stevia, coconut or palm sugar. Those are the ones I have tried that I can recall at the moment.

Then I found out non-organic foods were making me sick. I would always have these terrible headaches, feel exhausted, and get this numbness/tingling or burning in my hands and arms. It went away after I switched solely to organic foods.

I tried to see another GI doctor in 2011, on advice I got from a nutritionalist I saw (thanks anyways food pyramid, but you don’t have anything to offer me). He was incredible. He was intelligent, listened to me, my symptoms and entire story. We had a whole plan set in motion to get me better! He even confirmed that it is completely NOT normal to not have your bowels clear out when you do the prep for the sigmoidoscopy. We tried various things to get my bowels cleared out, which did not work. So far what we have found out is that my bowels are “lazy.” They try to work, but the muscles just don’t do it on their own for some reason, so they need something to stimulate them, such as senna. The next time I went in for a check-up with my new GI doctor a few weeks later: he had completely forgotten who I was. I was totally crushed. It was hard not to break down right there and cry in front of him.

Then I made a series of appointments necessary to see a headache and migraine specialist. When I went to my primary care doctor and spoke with him about my symptoms, he told me that in order to see the specialist, you have to take three or four migraine prescriptions and have them be ineffective. I let him prescribe me one, though I was unsure if I was going to take it. It was a real hassle getting it from the pharmacist because I needed a prescription that didn’t have any type of sugar. Apparently those don’t exist. The pharmacist gave me a look like she had never seen someone so stupid, almost shouting at me that “they don’t put the sugar in it to sweeten it, it’s only a filler! It won’t give you a headache!” I explained to her that sugar causes my headaches. After getting the prescription filled I went home and put in my cabinet, where it still sits, untaken. By the way, the prescription they gave me also causes rebound headaches. I’m not sure when it’s ever okay to take something that makes your current problem occur more frequently. No thank you.

Present

I continue to get more sensitive. I can’t go into most stores now. If I do I will have a headache for at least 24 hours. I recently had a trial day for a job and there was one of those scented plug-ins. I felt ill for the next 3-4 days. I can’t go to the movies. Even if I go somewhere “safe,” some smelly person who is wearing perfume—or even just deodorant or laundry detergent scent—could come into the room or stand near me in line. And then I would be ill.

The doctors at my primary care facility don’t think there is anything wrong with me. No one has ever shown a sincere, long-lasting interest in my health.

There is this type of medicine called functional medicine. It’s where the doctor is actually interested in finding out what is wrong with you instead of just writing a prescription and treating your symptoms. This was an exciting discovery, but also a very depressing one. Shouldn’t plain old “medicine” have this definition? The answer is a resounding and definitive no. I find that very disheartening.

I sure hope I find a real doctor at some point in my life. Sooner would be highly preferred over later.