Struggling Through Life | 09.02.2017

I’m Rayna and I’m 32 years old. I’ve been diagnosed with cold urticaria, a corn intolerance, histamine intolerance, a severe dairy and casein intolerance, and candida overgrowth. And that’s just since I turned 30.

How It All Began…

After some major life stress (my husband almost dying, working two full time jobs, a bankruptcy due to medical debt and then my husband losing his job the very next day, our dog needing heart worm treatments and then my husband needing a second surgery, both of which required serious procedures all in the same month)  my body started attacking itself and my Drs and I have been trying to figure out why ever since. One day I ate ice cream without any problem, and the next day I broke out in hives from carrying a bag of ice and then went into Anaphylactic Shock from a sip of cold lemonade. Terrifying, isn’t it?

From there, it only got worse. Not only did cold food and liquids trigger a major reaction, but I soon found that air below 60 degrees did as well. I live in Colorado, so I spent that winter hiding inside. I went to National Jewish, one of the best allergy hospitals in the United States. They could give me no explanation, but insisted that I take large quantities of medication to mask the symptoms, including ones I was allergic to. I declined, and searched for a doctor that could help.

I finally found one and together, we’ve spent the last two years doing blood work, stool tests, restricted diets and slowly, but surely, peeling back the layers.

The Road To “Recovery”…

The process was rough. During this process I lost all of my favorite foods including pizza, chocolate, wine, pop corn, mexican food and tomatoes. I couldn’t eat out, ever, and I lost all packaged foods. I lost most of the outdoor activities that made me happy including skiing, swimming, stand up paddleboarding, water sports in general and anything that required I go outside when it was below 60 degreees. I lost all of my travel foods, like bars, jerky or dried fruit. I couldn’t camp in places where the temperatures would drop to low, couldn’t walk my dog in the winter, couldn’t hike at high altitude, and when I did hike I had to drink hot water to cool me down. I couldn’t meet friends to drink wine, or grab coffee. A simple trip to the grocery store required that I avoid every scented aisle because I had a multiple chemical sensitivity. A doctor or vet office would result in hours of stomach cramps later.

There was a time when I was down to 10 foods I could consume and half of them were herbs like basil and oregano. There was a time when I didn’t eat anything with sugar in it for 9 months. I missed out on holidays, celebrations and pretty much any social event that required I be around a lot of people. There were times when I was so afraid to try a food that I’d cry, and nights when I felt like my stomach was going to explode from pressure because I tried the wrong food. It was constant trial and error, stressful in every way, and I’d bet money I’m even forgetting some of the worst parts.

I lost friends who thought it was all for attention, or ones who just moved on since I couldn’t grab wine or coffee with them anymore. I lost out on adventures. I lost out on life.

But I learned to meditate and slow down, I eventually got over my fear of eating and cold weather, and I learned a lot about my body and the way it works. As I healed, I was able to go out in the cold weather and even started hiking at altitude again. I was able to go to the middle of no where to rock climb, without fear that my body would fail me. I started trialing new foods regularly, and my body was accepting them one by one.

Sure, it was an on going journey, but one I was sure I could beat.  And I did, or so I thought.

Given The “All Clear”

As of August 3rd, 2017, I went into my doctors to look over my most recent testing. It all looked great. The inflammation in my body was down, I was no longer showing up as carb intolerant, my Candida was almost non existent, my gut bacteria balance looked pretty damn good.  I was eating balanced meals that included higher histamine foods, and could even drink a few glasses of wine while enjoying a slice of pizza. Not all the time, but still.

My husband and I bought a van, to convert and quickly started making plans to move into it as soon as possible. I finally had my life back, we were finally going to be able to live the way we wanted to.

What Went Wrong…

That night, I planned to celebrate, and in doing so, I wanted the house to smell nice. I decided to heat some Lavender Oil but totally forgot to add water. The house filled with a strong scent, my head started pounding and I got very nauseated. Realizing what I had done, I opened up all the doors and windows and left the house.

The next day I drove over a high elevation mountain pass on the way to photograph a wedding. This triggered a massive histamine reaction, which resulted in severe nausea, full body tremors, and dizziness to the point that I couldn’t stand. The father of the bride had to call the paramedics. It was a wedding photographer’s worst nightmare. I tried to go to a wedding that following weekend and couldn’t make it. I slept at a gas station near the Grand Junction ER just in case I needed immediate medical assistance, wondering if this was my life now.

Over the next two weeks I slowly started to get better, slightly less nauseated each day. I even started exercising again. I actually thought I might get through it. And then my body made a turn for the worse and I started having severe reactions to anything warm, let alone hot. It landed me in the Emergency Room where they looked at me like I was bat shit crazy. Consuming warm water, which I’d been doing for years, now caused the worst nausea I’ve ever had in my life as well as full body tremors for 3-4 hours after every meal. Just sitting in the sun for ten minutes caused a rash. Now, not only was I allergic to the cold, I was allergic to the heat as well. I just curled up and cried for hours. All of our plans, including a two week trip to Switzerland, crumbling right in front of me.

Obviously I wasn’t really “better” but believing that I was and then being knocked down so quickly really took a toll on me.

Where’s I’m at Now

It’s been a week since my ER trip, and I have managed to consume between 500-800 calories each day, and roughly 30-40 oz of water. I’ve spent the majority of my day curled up in bed, alternating between trying to work so that I can pay my bills, meditating and sleeping. Luckily, my husband works nearby so he stops home at lunch time so I can attempt to eat something.

My doctor is an amazing doctor, but he doesn’t seem to know where to go from here. He’s racking his brain trying to figure it out, but that scares me.

The truth is, I’ve been laying in bed for five days now. I’m terrified to eat or drink, I’m terrified to go in the sun, I’m terrified to take a hot shower. I haven’t had anxiety in years, but I do right now and it’s brutal. I mean, I can’t even eat without having a major allergic reaction. Just think about that…really think about that. I can’t even work right now, let alone exercise, spend time with my family or live my life. I’m essentially a prisoner of my own body.

So I’ve decided to raid my retirement in order to see a functionional doctor that specializes in autoimmune diseases. I don’t want to do it, but in the United States, insurance companies only believe in treating the symptoms. So it’s up to me to pay for it out of pocket. My first appointment is on Wednesday and it’s a two hour appointment. I’ve already had all of my medical tests faxed over, as well as a full 24 page workup on my past medical history and symptoms. He’ll review that and on Wednesday he’ll do a full body and neurological exam. From there, we’re supposed to make a plan.

It’s really hard to stay positive, but I’m trying. I even printed out a bunch of positive affirmations today and put them all over my office. But I know I have to keep fighting, it’s my life after all.

And I know I’m not the only one suffering like this. So because of that I’ll be documenting my journey from here, raw emotion and all. It will give me an outlet for all of the crazy emotions that are constantly swirling around my head and hopefully it’ll help someone else along the way.

 

2 thoughts on “Struggling Through Life | 09.02.2017

  1. Hey Rayna, figured I’d comment here rather than on facebook, but feel free to post this comment if you want. I have had a number of similar symptosm to yours on and off during my life but never as severe or as many at once as yours. In junior high school I was diagnosed with IBS. In high school I was diagnosed with lactose intolerance. Once while playing a soccer game, my throat closed up and I couldn’t breath. No adults realized what was going on and they offered me shade. It wasn’t until I went to medical school I realized that was a near fatal reaction to… who knows what. Since I was little my hands and fingers swell up when I make snowballs. I get Raynaud’s when the ambient air is cold. In medical school I had a 3 week case of severe dyshydrotic excema on my hands that was worse looking than the “textbook” case in the Harrisons textbook of internal medicine. Later that same year of school (3rd year, the most stressful IMO), I started to develop discrete cold urticaria. I’d carry a bottle under my arm and get a welt the size of a softball. When I did my 2nd triathlon, the water temperature was in the 60s, and during the warmup my feet got serpiginous urticaria (looked like a science fiction image), then during the race, my throat started to close up again like years before when I played soccer. I also gave migraines, frequent belly aches, gas, bloating, etc. When mountain biking a fire road, I’ll get hives on both forearms from the vibrations of the road through the handlebars. At one point I was terrified of the cold urticaria, especially since after that triathlon I qualified for an entry to Escape from Alcatraz, swimming in the SF bay. I spent 7 months carefully conditioning myself to cold water and would often test myself by holding ice cubes to see if I got hives. I’ve gone through periods where the slightest pressure causes welts, and dermatographism where I could write my name on my skin and it would welt up within a few minutes. there are dozens of other little things like this that have come and gone over the years, including itchy lips and swollen tongue when eating vinagrettes with garlic & lemon. But I can eat both of those on my own without issues. So many odds and ends, but the disabling ones are the stomach pain & headaches, which only lead to more anxiety & stress & more stomach pain.

    As a physician I strongly believe that many of these reactions are due to an emotionally/physically/psychologically stressed immune system overreacting to any threat…like an allergy but not allergy mediated. I have no proof and have done no research but personally I think alot of these issues are due to my inner nature of holding in thoughts, feelings, ruminating on the negatives and as I get older and older, needing to think more and more about finances and parents and, like you…a boyfriend who nearly died, not once but three times. There is a lot of PTSD for me both as a result of my profession and the trauma of seeing him die in front of me, and having no choice but to keep moving forward and not taking any time (how can I ?) to step back and do things for myself.

    thorugh counseling after Michael’s heart attack I learned a lot of good strategies for myself, that I find myself tapping into. It’s like any sport or activity though, I hvae to practice and I need coaching. She’s less of a therapist than a coach and that helps me as well by thinking of hit that way.

    I hope you find some peace and solutions so you can live on your own terms.

  2. What a difficult thing to go through, Rayna!! I knew you were having some medical challenge, but had no idea it was to this extent. Writing about your journey will definitely help you get through it and will help someone else who may go through this, too. I hope your new doctor has a new solution that will help you. 🙂

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