tag:blogger.com,1999:blog-69395754202654531322024-03-12T22:58:24.013-07:00Peanut Allergy Survival BlogI write about surviving anaphylactic peanut allergies. I'm in my 30's and I've been allergic to peanuts since I was 15 months old. I've had dozens of severe allergic reactions to peanuts. I majored in Biology and Chemistry, and I have a lot of experience working in laboratories, so this blog will have accurate scientific information. I am writing this to save lives and fight the fear that goes with this deadly condition! Please subscribe to my blog!Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-6939575420265453132.post-46057692572905651372016-05-29T13:00:00.000-07:002016-05-29T13:00:13.233-07:00Restauranteur Convicted of Manslaughter in Peanut Allergy Death<div>
As a person with peanut allergy, I am reluctant to eat at restaurants that have any peanut items on the menu. A kitchen with peanuts is a kitchen that could cross contaminate my food. My general rule is that I don't eat at any Thai, most Vietnamese, some Indian, and Chinese restaurants. </div>
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Before I go out to eat, I call the restaurant and ask my questions. I look up the menu online and I scan it for signs of peanut. Eating at a restaurant is a pain for me and something I don't entirely feel safe doing. I am as careful as possible. </div>
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When I was around 12, my mom took me out to eat at the Bamboo Garden, a vegan Chinese restaurant. The waiter assured us that the restaurant would be careful and not use the same cookware to cook my food. He said that my dinner would have no peanuts. He lied. 20 minutes later, I was in the Group Health Emergency Room fighting for my life. My mom complained to the manager, and I have never eaten there since. This experience left me with a deep distrust of vegan and Chinese food. The waiter who lied, and the sloppy kitchen staff who used very cross-contaminated dishes were never punished for hurting me, and causing my violent reaction. </div>
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To my knowledge, historically, restaurants have been dodging responsibility for the suffering, pain, and sometimes death they inflict on people with food allergies. People with food allergies are usually blamed for their carelessness in eating questionable food. </div>
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Education about food allergies and the dangers of cross contamination should be required Public Health knowledge to obtain a Food Handler's Permit. Currently it is not, and that needs to change. And with this landmark court decision, hopefully it will. </div>
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I have been following this trial for a few weeks. The jury reached a decision, and they convicted the owner of an Indian restaurant for the death of Paul Wilson, a customer who was allergic to peanuts. The server wrote 'no nuts' on Mr. Wilson's take out meal. </div>
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<a href="http://www.nytimes.com/2016/05/24/world/europe/british-restaurateur-sentenced-to-6-years-after-peanut-allergy-death.html">http://www.nytimes.com/2016/05/24/world/europe/british-restaurateur-sentenced-to-6-years-after-peanut-allergy-death.html</a><div>
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I am not usually concerned with the proceedings of trials, court hearings, mostly because legal transactions bore me. However, I followed the news stories about this case with enthusiastic interest. I had a burning desire to see if the legal system would serve justice. Would the court find the restaurant responsible? Would this decision make restaurant food safer for people with severe food allergies like me? Would restaurants think twice about lying to their customers in the future, if a guilty verdict was reached? </div>
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I was overjoyed when the jury convicted the restaurant owner. Justice at last! I hope that this decision makes restaurant food safer for people with deadly food allergies. </div>
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Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com5tag:blogger.com,1999:blog-6939575420265453132.post-81594652817885870382016-05-28T14:28:00.001-07:002016-05-28T14:28:22.078-07:00Recent Reaction!A couple of weeks ago, I was eating my snack while driving home from work. My snack was coconut cashews from Trader Joe's. It was a prepackaged bag of nuts. The warning on the bag said "Manufactured in a facility that also manufactures other tree nuts." I have eaten this snack for years. I like cashews, and I like coconut, and combined they are a great snack! Creeping along in heavy Seattle traffic, I bit down, and realized that my mouth was no longer tasting the sweet, wonderful taste of cashews, but rather the nutty, roasted, rich taste of peanut!<br />
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I was in mid-swallow when I realized what was in my mouth was potentially fatal. Luckily, I always carry a vomit bag in my car, so I gathered up the bag and spit out the remaining contents of my mouth. Seattle has awful traffic, and I was stuck! I had a couple of choices: pull over and call 911 and use the Epipen, or drive to the hospital using a low traffic route, and use the Epipen if my body started displaying objective signs of anaphylaxis. I chose option B. I thought it would probably be safer to just Epipen myself while speeding to the hospital, rather than waiting for an ambulance to take me up to an E. R. on pill hill.<br />
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Accidental ingestion is a catastrophic scenario. If a person dies from a food allergy, accidental ingestion always triggered the fatal reaction. Accidental ingestion is terrifying to a person with peanut allergies because of 3 things: it's unpredictable, it can occur immediately or within 20 minutes after eating the contaminated food, and finally, once the reaction progresses beyond a certain point, it's impossible to reverse with an Epipen. <br />
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So, knowing all of this, I drove myself to the E. R. I had the Epipen hovered over my right quadriceps. I didn't use the Epipen. Probably should have. Due to the possibility of accidental ingestion. <br />
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The main reason I did not stab myself in the leg with the Epipen is that my body did not show objective signs. No sudden asthma tightening and wheezing. No hives. No swollen lips. No swollen throat. I tasted peanut. That's it. This whole adventure could have been a false alarm. Who knows? But with deadly food allergy, it is always better to be safe than sorry.<br />
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The Epipen is painful. Imagine taking a Philip's head screwdriver and stabbing yourself in the leg with it and holding it there for 10 seconds. This is what it's like to get Epipened. If it's between the Epipen or death, give me Epi. If I am around other people, I usually get someone else to administer the Epipen, because I have a hard time doing that to myself.<br />
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I have asked my allergist numerous times to write me a prescription for a small needle kit for epinephrine like the diabetics use, and he claims that epinephrine is not sold to consumers that way. I am a careful methodical person. I majored in Biology and Chemistry, -it would be easy for me to pull over, get out my little epi-kit, fill a small injector with the medicine, and then inject it into my arm muscle. That's more my style. I could easily handle that. I struggle with firing what feels like a nail gun into my leg. No wonder people don't use the Epipen like they should. <br />
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In the past, I've noticed that a few weeks after a recent anaphylactic episode, I have nightmares that I Epipened myself, and after I wake up, I discover a large bruise on my leg! I am most likely punching my leg while dreaming. This is encouraging because it seems to indicate that my mind and body will hack my brainwaves to survive anaphylactic shock! I'm sure I could stab myself if I was confronted with objective evidence of anaphylaxis, (sudden wheezing and asthma, hives, face swelling, vomiting, diarrhea). <br />
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There should be an alternative delivery system that is not as violent and doesn't hurt as much as the Epipen. I received vaccinations in the in the rear when I was a kid, and they didn't hurt as much as the Epipen. There ought to be another device invented that will inject epinephrine in the arm, or the rear, a little more chill, and non-violent. I sure hope big pharma manufacturers read my blog, and create this!<br />
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Once I got to the Emergency Room, I parked in the 30 minutes or less space right by the automatic sliding glass entrance doors. I went in and explained my situation to the triage nurse. I sat down by the aquarium. I tried to relax and watch the fish. This was to be my last moment of relaxation and healing for the next 3 hours. My name was quickly called. I explained what happened to the next nurse. My vitals were normal. My pulse was fast, 100 beats a minute! I was scared as hell!<br />
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I was taken to a small room and a doctor looked over my chart, took my vitals again, and decided I did not need epinephrine. She noticed that I was getting a red rash and she was concerned about how my asthma sounded, which was slightly worse than baseline. She ordered IV Benadryl and left. A nurse hustled me to a new location. The Emergency Department of UW was getting busy and they needed the room. My new address was a gurney in the hall. I changed into a hospital gown and orderlies attached sticky monitors to my chest and back. A blood oxygen pulse counter was clipped to my finger. An IV catheter was inserted into my right arm. The IV was very painful. My arm ached with dull, throbbing pain. It hurt so bad I couldn't move it, and after about 20 minutes, my fingers started to tingle. I was trapped, wired to the hallway heart machine monitor laying on a bed in the E. R. hall, my right arm frozen in agonizing pain. I was at my most vulnerable. <br />
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Despite my physical restrictions, I was able to take a couple of decent selfies... With my left hand! <br />
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I was having a really good hair day that day. <br />
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I talked to a couple nurses about the intense pain that the IV in my arm was causing me, and they were unsympathetic. A terse nurse told me that she could take it out, but she's have to "Stick me again." I decided to leave the catheter of pain in. My arm was shot up with diphenhydramine and then I felt dizzy. <br />
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Light-headed, helpless, and exposed, I took a look at what was going on in the E. R. and allergies became the least of my worries. About 15 feet away, the nurses had locked the door to a patient room. The person inside started to pound the door. 'Bang! Bang! Bang!' I could see, hear, and feel the door shake. A nurse called security, and security guards swarmed around the door and the person inside calmed down. The people who handled the situation started to disperse. Now I could relax and focus on healing. <br />
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That's when I heard the screaming from a room behind me. The screaming died down. It was not a full moon that night. What was going on? <br />
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I asked about the screaming, and the nurse explained that the person screaming was now calm because they had ordered his dinner, and he now seemed fine. I took a deep breath. Everything was going to be alright. I was going to be okay. I heard a loud commotion start behind me: screaming, a struggle, a door being forced open, and a tray full of food whizzed by my head and hit the wall opposite me. Nurses, orderlies, and security ran past me to subdue the patient who was freaking out. They seemed to have succeeded because the noise calmed down.<br />
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An orderly started to clean up the broccoli and food splattered on the wall. I looked at him and said, "I guess the food here is terrible and I think he didn't like the broccoli." The orderly and I laughed. <br />
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I was completely terrified. After 3 hours of observation with no noticeable symptoms of anaphylaxis, the next nurse just who had just arrived to the next shift okay'ed me to be discharged. I paid whatever it was they charged me, like $300. <br />
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What an adventure! I am very grateful that I didn't get very sick. This experience had positive aspects that will help me be a better person. I made some mistakes, and I learned from those mistakes. I got to practice my skill of being a hospital patient (I am very good at being in the hospital). Living with deadly allergies may be terrifying at times, but it's not as catastrophic as the fear in my mind sometimes makes it out to be. Experiences like this have made me extra-ordinarily resilient. Now, I have a greater appreciation for all the little things in life, and I have noticed I seem to have increased compassion and patience for the people around me. Thanks for reading my blog. Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com2tag:blogger.com,1999:blog-6939575420265453132.post-44695952994714038492015-09-06T22:16:00.001-07:002015-09-06T22:16:56.761-07:00Airborne Peanut "Reactions" Debunked! ~and my Microbiome ObsessionI had the most thrilling, exciting, life-affirming day yesterday because of my peanut allergy. It involves international travel, adventure, and heroic deeds. I will blog about this at a later time. That's why you should subscribe to my blog. Subscribing to my blog is free, and the latest installment will conveniently be delivered to your email inbox.<br />
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What I am very excited to write about tonight is to discuss several articles that validate my personal experiences and belief in science in relation to my peanut allergy! Here are the links:</div>
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<a href="http://munchies.vice.com/articles/scientists-are-arguing-that-you-cant-have-an-allergic-reaction-to-nut-dust">http://munchies.vice.com/articles/scientists-are-arguing-that-you-cant-have-an-allergic-reaction-to-nut-dust</a></div>
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<a href="http://www.dailymail.co.uk/health/article-3222262/Airborne-peanut-allergies-flights-MYTH-Leading-scientist-claims-s-impossible-reaction-triggered-way.html">http://www.dailymail.co.uk/health/article-3222262/Airborne-peanut-allergies-flights-MYTH-Leading-scientist-claims-s-impossible-reaction-triggered-way.html</a></div>
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The Daily Mail. I know, right? I apologize that I included it as a source however, the material articulates a point. Seriously, there is a point besides the hysteria and bad, sloppy writing. And that point gives me the warm fuzzies, and it makes me feel safe. Well, I can't ever really feel 'safe.' But somewhat, a little safer. </div>
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The scientists are convinced a person cannot get an anaphylactic reaction due to airborne peanut protein alone. This is an issue that has concerned me. I travel by air, bus, and train. And I have been supremely terrified of stories of apparent anaphylactic reactions due to 'airborne' peanut dust. I have personally limited my travel. I have been a disciple of The Fear. </div>
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But most recently, I am a disciple of the wisdom of my Microbiome. I have been completely obsessed with my microbiome recently. Have you ever heard of Kim Chee? I have eaten three jars of it in the past week. It's a normal thing for me now to consume half a jar of kimchee for breakfast. Why? Because that spicy fermented cabbage is teeming with probiotics that could theoretically alleviate my allergies! I buy insane amounts of probiotics and consume them with reckless abandon! A few weeks ago I bought 16 ounces of highly concentrated probiotics that were supposed to last a month. I drank 'em down in 4 days. I read about the studies of very young children fed huge amounts of probiotics: their developing immune systems could easily be conditioned to stop being allergic to peanuts. Probiotics are awesome. They seem to have a positive impact on my mood, my ability to concentrate, and a healthier feeling in general. But I remain allergic as all heck to peanuts. <br />
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I am not giving up! I am going to keep trying!</div>
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I intend to keep consuming ridiculous amounts of probiotics, regardless of whether they help my peanut allergy because I feel better when I do this. It's not going to be the magic cure that ends my severe allergy. I appreciate the addition to my toolbox, another helpful aspect about my life that I can control that can help keep my asthma and eczema from flaring and crippling me. <br />
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The link between my Microbiome obsession and "Airborne Peanut Reactions" has a name and it's Tim Spector. He's the scientist in the articles who recently wrote a book about the fabulous human microbiome called "The Diet Myth." He is also the scientist who did the heavy lifting and took a close look at all the scientific research, and concluded that the heavy peanut protein molecules needed to cause a reaction cannot become airborne. </div>
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I have always been skeptical of people who claim that their 'peanut anaphylactic reaction' is due to airborne peanut proteins. The reason for my skepticism is my childhood. I grew up in the 1980's. My dad was the Vice President of an airline. He flew all over the world all the time. He flew me all over the world, a lot. Well, maybe not all over the world, but to the USA and the Caribbean frequently. I started having anaphylactic reactions to peanuts when I was about 4.</div>
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I wasn't as allergic then as I am now. Scientists and laboratory people describe the antibodies in my blood as being 'thermonuclear.' Level 5 or level 6. Actually the last time I was tested in 2011, the laboratory had to dilute my blood serum with saline, and even then it maxed out as a level 6. It used to be 5, but it is now currently 6. That's the worst this allergy can get. </div>
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When I was a kid my allergy was maybe half as bad as it is now to peanuts. And this was in the days when peanuts were served as snacks. Every flight. I remember having asthma a lot when I was flying in planes with my dad. I remember taking a lot of Benadryl. I remember being very itchy. But I never had an anaphylactic reaction when I was flying as a kid. And I was in a lot of pressurized cabins with over 50 people opening up packets of peanuts and eating them around me. And I had asthma attacks too. Because people liked to light up and smoke cigarettes after eating peanuts. It was the 1980's and it was very popular to smoke cigarettes on airplanes. I had a rough childhood. It was kind of like a nightmare at times. I'm very happy that things have changed. <br />
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For me personally, the evidence does not suggest peanut allergies can be transmitted in the air. For that reason, I have remained skeptical of people who claim that they have 'airborne peanut allergies.' </div>
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If you are a person who believes in airborne peanut anaphylactic reactions, I do not mean to invalidate you. Just because my personal experience and current science doesn't show this to be true does not mean that it cannot be possible. </div>
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Who knows, maybe there will be some more scientific research in the future and it will show in some cases that a little bit of peanut proteins can become airborne. That is the cool thing about science!<br />
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Science is always changing and learning, amending itself, and adapting to the latest advances....<br />
Just like my Microbiome!</div>
Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com12Seattle, WA, USA47.6062095 -122.332070847.2636815 -122.9775178 47.9487375 -121.68662379999999tag:blogger.com,1999:blog-6939575420265453132.post-73424176960277936382015-03-09T17:00:00.000-07:002015-03-09T17:00:52.504-07:00Going Gluten Free to Fight Allergies<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">People often suggest that I abstain from wheat and gluten to improve my asthma, eczema, and allergies. I hear this from talking to people in-person and on social media. And you know what? Why the heck not? I've got nothing to lose, and it's fun to experiment and see what works for allergies. Starting yesterday, this week I'm taking the plunge. This week I will be gluten free!</span></span><br />
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<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">Some motivating factors involved with my decision: high pollen counts, terrible eczema, and bad asthma. I am super allergic to alder pollen and the current warm weather has got the alder pollen count super high. And that is making me super miserable. Wednesday through Friday, the skin on my hands broke out in horrible looking eczema. I'm using Flovent and Flonase like crazy. I'm using my rescue inhaler more often than I should. My eyes and face itch. My head's foggy, and my sinuses feel like sore rocks behind my cheeks. I just took half a Bendryl. It's not even 4 in the afternoon. Benadryl stopped making me drowsy years ago. Mostly because I've been eating it like Tic-Tacs since I was 3 years old. The allergy life. Damn pollen. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">This weekend, I am pleased to report that despite my horrible allergies, I went hiking through an alder forest! I hiked 2.7 miles up 1350 feet to check out beautiful Lake 22. All last week I have been guzzling probiotics and eating lots of healthy fruits and veggies. I have been using my steroid inhalers religiously every day. And at the top of the trail, looking out over the pretty lake, with ice floating in it, I ate half a bagel. A wheat bagel. Later I felt sick and got the runs. And that got me thinking, maybe I should take a break from wheat/gluten for a little while. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">I believe it is healthy to switch up your diet. I was eating wheat/gluten several times a day, and I was wondering if this could be adversely impacting my allergies. Going gluten free feels very stylish and fashionable. I feel very trendy and pleased with myself. I even feel slightly less bloated. Last night to prepare for my gluten free week, I bought a brown rice bread loaf at Trader Joe's. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">I'm not going totally overboard. I'm still planning to eat soy sauce and crackers that have been made in a facility that also makes wheat. But I'm cutting out wheat bread, pasta, and baked goods. I will allow small amounts of wheat.</span></span><br />
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<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">Yesterday's day one gluten free menu: Breakfast: scrambled eggs with cheese. Snack: 2 mandarin oranges. Dinner: 1 medium size bowl of Pho. I was very tired last night and went to sleep at 9:30 PM. I never do that but my allergies were bad, so I hit the hay early like an elderly person. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">I woke up at 6:30 AM today, and did my meditation practice. I noticed my eczema was bad on my neck and forehead. It hurt. It was burning. I put topical steroid cream on the afflicted parts of my skin. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">Day two's gluten free menu: Breakfast: 1.5 peices of rice bread with butter, 2 oz cashews, and 1 apple. The rice bread has the consistency of a sponge. It's like eating a sponge. With butter. I microwaved it for 30 seconds and the consistency is slightly improved. And it's got a rice flavor. I'm not sure I like it, but it's definitely gluten free! </span></span><br />
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<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;"> Lunch: leftover beef jerkey and potato chips from the hike and a cup of tomato soup. </span></span><br />
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<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">Around 3 PM I decide I need a snack. I go to Trader Joe's and buy some mandarin oranges, and then I buy some asparagus to eat later. I also buy a box of Trader Joe's "Soft-Baked Snickerdoodles -Peanut, Tree-Nut, and Wheat free." I eat a couple of cookies. They were delicious. Light. Fluffy. So good. I eat another cookie. I am in heaven. There is a party in my mouth. I end up eating the entire box. Hmmm. Not my best choice of the day. At least there were only 12 cookies in the box. I eat a carrot and feel somewhat healthier. </span></span><br />
<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span>
<span style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif;">Well, so far so good. Will I make it an entire week? Will I send my allergies into remission? Will I experience improvement in my eczema? Will I drive my loved ones insane with my new self-imposed dietary restrictions? Will I be even more ridiculously inconvenienced than I currently am? Okay, obviously the answers to the last two questions are yes. I hope this experience will increase my compassion for people with wheat/gluten allergies. I'll be blogging with an update in a few days. Stay tuned!</span></span>Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com0tag:blogger.com,1999:blog-6939575420265453132.post-40932022936531444242015-02-19T20:05:00.000-08:002015-02-19T20:15:13.204-08:00Peanut-Tainted Cumin Made Me Sick! Hungry Boyfriend Saved My Life!I finally figured out what happened after my boss called me today in hysterics. <br />
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"Denise! Don't eat any cumin! I heard on the radio it all contains peanuts!" <br />
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I thanked her. I told her that I appreciated her letting me know. I told her I was avoiding cumin. After we hung up, I experienced a Eureka moment of insight: I hadn't been vigilant about cumin avoidance last night, and that was the likely reason for today's violent eczema flare up.<br />
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It all started last night with a late night visit to the local taco truck with my boyfriend. I ordered a chicken burrito, my boyfriend ordered tacos. I was responsible about my peanut allergy when ordering my food, I asked the cashier and the cooks if they used peanuts 'en Espanol.' They said they didn't, so I thought I would be safe. But you know what? I didn't ask about cumin. And Mexican food uses cumin. <br />
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What's so bad about cumin? The FDA discovered peanut proteins in cumin and products containing cumin and issued a massive, massive recall.<br />
<br />
<a href="http://www.fda.gov/food/recallsoutbreaksemergencies/safetyalertsadvisories/ucm434274.Htm">http://www.fda.gov/food/recallsoutbreaksemergencies/safetyalertsadvisories/ucm434274.Htm</a><br />
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<a href="http://allergicliving.com/2015/02/14/inside-the-peanut-tainted-cumin-recalls-what-happened/">http://allergicliving.com/2015/02/14/inside-the-peanut-tainted-cumin-recalls-what-happened/</a><br />
<br />
People with severe peanut allergies are being advised to avoid all cumin. <br />
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<a href="http://www.cbsnews.com/news/fda-issues-warning-about-cumin-spice-hundreds-of-products-recalled/">http://www.cbsnews.com/news/fda-issues-warning-about-cumin-spice-hundreds-of-products-recalled/</a><br />
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I started asking the cumin question about food I could eat last week, but I failed miserably to remember to ask it last night. <br />
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It is completely exhausting to remain perfectly on guard and vigilant about everything I eat. I get hungry. Food looks good, and smells great. Blood sugar gets low and my brain shuts down. And then I have the lapse in judgement. <br />
<br />
Unbelievably, despite the fact that I have been hospitalized over 30 times for severe food allergies and asthma, I get complacent. I'm around other people and I forget that I have this invisible disability, and I forget how some food can make me very sick. <br />
<br />
Back to the story, my boyfriend and I take our entrees home and I sit down in the living room and he goes into the kitchen to put his tacos on plates. While he's putting hot sauce on them, he turns and the plate of open face tacos flips off the counter on to the floor. Not the kind of floor you could eat food off of. His dinner was ruined. Poor guy! He was so bummed out. <br />
<br />
I told him that I was really sorry that happened, and then, being the awesome girlfriend I am, I told him he could eat half my burrito. He said okay, and then made something with melted cheese and then he sat down next to me. We cut the burrito in half and he got the slightly larger half. And this is how he accidentally saved my life. I probably would have gone into anaphylactic shock had I eaten the whole thing. It was a yummy burrito. <br />
<br />
About 5 minutes after eating my half-burrito my stomach starts to hurt really bad. It hurt with this very specific kind of pain. It's very alarming because I only get it when I eat food I'm allergic to. It's different than the other kinds of stomach pain like heartburn. It's hard to describe, but it's like I can feel the food I have eaten disrupting my molecular structure.<br />
<br />
I have this helpful app on my phone called "Why Risk It" It has a helpful list of all the symptoms of anaphylaxis. Stomach pain is one of them. I was on edge, I knew it could be the start of a reaction. I waited to see if other objective physical symptoms occurred. I was waiting for my asthma to kick in, my face to swell up, hives to start appearing on my body. 45 minutes went by and none of that happened. I was in the clear? I took a couple Benadryl and then went to sleep with my Epipens easily accessible inches away. <br />
<br />
At 4:45 I woke up and my hands were on fire. Warning: the next part is gross so you might want to skip this paragraph. The skin on the top of my hand was oozing clear liquid and I could see the layers of my skin trying to separate. My skin became pale and red. An angry inflamed rash appeared. Accompanied by searing pain. Tiny little cuts started bleeding along the entire rash on the top my left hand. The pain started to become really itchy, like I had hundreds of mosquito bites. Blood started replacing the clear liquid. The skin on my hands was literally burning from the inside. <br />
The eruption of this violent rash is what is known as an eczema flare, when my immune system turns on me. This is what happens sometimes when I unwittingly eat a tiny, tiny amount of something I am allergic to and I do not go into anaphylactic shock. <br />
<br />
I'm doing sort of better than this morning. I was a trooper and went to work. I still have itchy patches on my scalp, forehead, neck, and under my ears. My hands are doing better. I treated them with steroid cream. One of the side effects is thinning of the skin, and my hands look like they are 90 years old. I have grandma hands. But the rash and the bleeding have gone way down, and it only hurts a little to move them to type. I am able to accept the pain and continue on with life. I am grateful. Not everybody can do that. <br />
<br />
My stomach and abdomen still hurt. My body feels sick from all this inflammation. <br />
<br />
And I'm mad at myself for letting this happen. And I'm also mad at food because it turned on me. I ate an apple for lunch, oranges and toast for breakfast. Haven't had any dinner. I'm fed up with having a body that requires me to eat. I'm upset with my body for being so broken. Why should I eat food if it makes me sick like this? These are temporary issues. All of this stuff will pass. <br />
<br />
Thank you for reading, and I hope you pass along the information about the cumin contamination recall to everyone you know affected by peanut allergies.<br />
<br />
For the next few months: warn everyone you know affected by peanut allergies to be very careful eating in restaurants that use cumin as a spice! I learned that the hard way.<br />
<br />
And I am very grateful that my sweet boyfriend ate half that burrito. He saved me! Even though I am in pain and miserable today, it could have been a lot worse. <br />
<br />Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com0tag:blogger.com,1999:blog-6939575420265453132.post-90329445338445234592015-01-18T22:03:00.001-08:002015-01-18T22:03:31.651-08:00Peanut Allergy is Contagious Through Organ Donation!I used to have a little red heart on my driver's license. The small heart indicated I was an organ donor. In the event of my death, my organs were to be distributed to people who needed them. I was happy about this. It was to be my final act of compassion to heal people with my spare parts. I can't say that I was looking forward to it, but I liked the idea of donating my organs to sick patients desperately needing them. I would be dead, sure, but at least I could be useful to others in a healing way. <div>
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When I had to get my license renewed, I had the little red heart taken off. I want to donate my organs to people who need my help, but I do not want to give them my peanut allergy. Which organ recipient will get my allergy? No way to tell. I don't want to play 'peanut allergy' Russian roulette with someone else's life. I want to end people's suffering, but I don't want to give them my level 5+ food allergy. Avoiding peanuts in this society is really hard, inconvenient, and it can be frightening. It is a real pain in the ass, and I don't want to give this to someone else. </div>
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<br /></div>
<div>
Here are some interesting links to articles detailing how transplanted organs (and bone marrow!!!) can spread peanut allergy:</div>
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<div>
<a href="http://www.nejm.org/doi/full/10.1056/NEJM199709183371204">http://www.nejm.org/doi/full/10.1056/NEJM199709183371204</a></div>
<div>
<br /></div>
<div>
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328872/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328872/</a></div>
<div>
<br /></div>
<div>
<a href="http://blogs.discovermagazine.com/seriouslyscience/2015/01/09/flashback-friday-transfer-peanut-allergy-donor-lung-transplant-recipient/">http://blogs.discovermagazine.com/seriouslyscience/2015/01/09/flashback-friday-transfer-peanut-allergy-donor-lung-transplant-recipient/</a></div>
<div>
<br /></div>
<div>
<a href="http://www.nature.com/bmt/journal/v49/n7/full/bmt201495a.html">http://www.nature.com/bmt/journal/v49/n7/full/bmt201495a.html</a></div>
<div>
<br /></div>
<div>
<a href="http://www.jhltonline.org/article/S1053-2498%2808%2900562-7/abstract">http://www.jhltonline.org/article/S1053-2498%2808%2900562-7/abstract</a></div>
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<br /></div>
<div>
There are lots and lots of science articles like this. It seems like the donor not only gives the recipient their organs and a second chance of life, but also their anaphylactic food allergy, and a drastically changed inconvenienced life of avoidance and fear. </div>
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<br /></div>
<div>
I'm going to go with what the science says. I don't think it's a good idea to donate my organs. What if the recipient of my organs really liked to eat at Thai restaurants? That would really suck for that person if they got my allergy. No Thai restaurants ever. I don't want my organs being responsible for making someone else's life suck. My peanut allergy is going to end when I die. I'm not giving this the opportunity to live on in someone else. </div>
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<br /></div>
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I think that I am making the compassionate, responsible decision. I am basing my decision on science. But it still kind of sucks. I would like to donate my organs, but it wouldn't be ethical to give people my disease. </div>
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So if you are reading this post and you don't have a deadly peanut allergy: rejoice! Rejoice at the freedom you have to help people with your organs after you die. Take a look at your driver's license, make sure it has that little red heart, and just to be on the safe side, send a 'just-in-case' email to your loved ones and next-of-kin and joyfully proclaim your compassionate intention to donate your organs to help sick patients who need them and are suffering. </div>
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I wish I didn't have this unpredictable, deadly disease, and I wish I could be an organ donor. I hope that you will consider donating your organs if you can. Thank you for reading, and please share this post and subscribe to my blog. </div>
Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com2tag:blogger.com,1999:blog-6939575420265453132.post-6672853982187698222014-12-09T18:50:00.000-08:002014-12-09T18:50:59.690-08:00Utter Deprivation of Delights and TemptationsI was in line at Starbucks yesterday, and I took a good long look at the pastry case. Delicious cake pops, muffins, lavish slices of pumpkin bread, sugar cookies in bright cheerful holiday designs and colors. Truly a collection of Earthly delights. And I absolutely cannot eat any of it. Because of this worthless sign on their pastry case:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsWZxrKPMzx2vkvnGo42_9JMiyexKAfvQ4SryjejmN4uEM7rIG2hwwEpbAZK00KE7Pr9CjY_q-UvKh3uXzF-KnnCjzpGBI2x2u-O04tMQOq0ilgvOuQ5ETw27BmL3BonKkL2DeQdbTTlyv/s1600/peanutblogstarcase.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsWZxrKPMzx2vkvnGo42_9JMiyexKAfvQ4SryjejmN4uEM7rIG2hwwEpbAZK00KE7Pr9CjY_q-UvKh3uXzF-KnnCjzpGBI2x2u-O04tMQOq0ilgvOuQ5ETw27BmL3BonKkL2DeQdbTTlyv/s1600/peanutblogstarcase.jpg" height="274" width="320" /></a></div>
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The problem with signs such as the one Starbucks posts, is that it does not indicate WHICH items have which allergens. But if you look at the food item behind their lazy sign, you can clearly see cookies. Cookies are a terrible food if you are like me and allergic to peanuts, in fact, cookies are probably the single number one killer of people like me. Horrible things. So this sign plus cookies in the case means that when I see a display like this I look at it, and appreciate the colors and the treats. And then I go without. I wonder to myself: what it must be like to be 'normal' and be able to select and eat anything you care to ingest. That's a crazy freedom I've never even experienced. <br />
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I guess most people don't have these severe dietary restrictions, so they probably wouldn't even think about it. But everyday, I am bombarded with countless food displays, advertisements, restaurants, coffee hours, pot-latches, etc, all overflowing with food I cannot allow myself to eat. If I don't eat, I won't die. If I plan ahead, and make careful food choices, survival is a likely scenario. <br />
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I only slept for like 3 hours last night, and I am kind of in a fog. <br />
<br />
I live in the Seattle neighborhood of Fremont. Fremont is a fun, arty, funky, place. Someone was telling me that Fremont had a lot of great places to eat. I was confused. Restaurants? Huh? I asked and they named off like 4 Thai restaurants. Oh. Okay. I guess Fremont does have a lot of Thai restaurants, but I've never noticed because I cannot eat Thai food. Thai food served in Thai restaurants in America has tons of peanuts, and the last time I ate at a Thai food restaurant I went into anaphylactic shock and almost died. I walk and drive pass Thai food restaurants all the time. They do not register to me as restaurants. They are dead to me. Places I'd rather not go. Having a severe allergy, entire sections of reality are blocked off to my perception in this way. <br />
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There is this stupid chocolate company called Theo's Chocolates in Fremont. It's a chocolate factory, and they give tours and make their delicious chocolate. But they are a small company, and the peanut chocolates are made on the same equipment as the other chocolates. Deadly cross contamination. To me Theo's Chocolates does not exist. I once biked past this horrible chocolate factory when they must have been making a peanut butter chocolate thing this summer. My eyes started to water, my nose started to run, and I started gagging when I smelled the aroma of chocolate peanut candy. This is a psychological problem. The peanut allergy is not airborne. But I can't even begin to describe the smell of peanuts when one has a peanut allergy. It's like smelling death itself. Theo's Chocolates is a pox upon the neighborhood from my perspective. Theo's Chocolates is dead to me. Maybe if they had allergy friendly practices and chocolates, I'd have a different outlook, but right now it's a worthless waste of space. <br />
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This summer, my little sister gave me a Groupon for this trendy new vegan restaurant called Plum Bistro. It was so nice of her, and I looked at the menu on the website and it didn't seem to have any peanut containing menu items. I was starving when I walked into the restaurant. My blood sugar was low: I was shaking. I started asking the waiter my questions: Do you have any menu items with peanuts? Can you accommodate a guest with severe peanut allergy who will die from cross-contamination. And the waiter went and talked to the manager and the kitchen. And the waiter suggested I leave because they could not. What. The. Fuck. This trendy restaurant can accommodate a strict vegan diet -which IS A CHOICE, by the way, but not accommodate A SEVERE FOOD ALLERGY WHICH IS NOT A CHOICE?!?!?!! <br />
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I agree with the vegans, I mostly eat vegan at home. But it seems that every time I go out and try to enjoy an ethical vegan meal, I am refused accommodation, I am refused service. The waiter at Plum Bistro told me that their food handling practices had rampant peanut cross contamination, and he basically advised me to eat elsewhere. I thanked him and left. I was so hungry, I was faint. I practically dragged myself out of the restaurant. It is such a heartbreak, a disappointment to be refused service. It brings to mind the shameful segregation period in American history, when blacks had to endure the heartbreak of being refused service at a restaurant. Well. That is kind of like my life. Right now. And the food smelled so good. And the ambiance was nice too. I really would have liked to have eaten there. I really like to eat vegan food. But I had to leave starving and sad. I didn't want to die. I didn't have a choice. I suffered a lot in attempting to eat at this restaurant, and I wanted to call them out on their discrimination of people with disabilities: people with severe food allergies like me.<br />
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That's the entire angst of today's whiny blog post. All these wonderful food establishments exist with their delightful selections. And I can't partake in any of it. Thus I suffer greatly. <br />
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I was on a date with a guy. He was nice. He was a vegetarian. He was critical that I occassionally ate meat. My response to him? It was this:<br />
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You know what? I really enjoy vegan and vegetarian food. I don't buy a whole lot of meat, and when I do it's grass-fed, organic, all that. I consciously choose to buy ethical meat. You know what else? I try to dine at a vegan or vegetarian restaurant, and historically, I've either been refused service, or lied to and gone into anaphylactic shock. You know that delicious chocolate company, "The Dilettante?" You know their vast cases of wonderful chocolate? I cannot eat any of it. I can't eat it because it is cross contaminated with peanuts and I could die. What about that trendy new cafe "Regent?" They have aisles of pastries, and I can't eat any of them and it's not a choice. Can you even imagine what that must be like? With your privilege of not having the concern of deadly food allergens to vigilantly avoid? Personally I would love being able to eat food safely at vegan restaurants, but the reality is that right now I can't do that. So don't criticize me for eating meat sometimes, I am doing the best I can living with an incurable disease that will kill me if I eat the wrong food. <br />
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That guy didn't get a second date. I just wasn't that into him. And it is bad manners to criticize someone for something they didn't choose. But he did buy me dinner, a nice one. And I was gracious when dining out with him as well, I ordered a vegetarian option: the Mac and Cheese. <br />
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Again, I realize that this blog post is whiny. But I am writing because it's important to let people know that for a person with deadly food allergies, this impacts my life in a big way, every hour, every day. And I would give anything to be able to be like other people. To eat food without the concern of a deadly food allergy. <br />
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Every time I see food gorgeously displayed in a pretty glass case, I look at it. Often the food is beautiful. And 99% of the time it is off limits to me. That gorgeous glass case may hold all the choices freedom has to offer a normal person, but to me it is a prison wall, something I could never eat. I wish science would cure peanut allergy. I am sick of living in a prison. I would give anything to be free.Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com2tag:blogger.com,1999:blog-6939575420265453132.post-48499894205109568422014-11-30T15:05:00.002-08:002014-11-30T15:05:24.349-08:00Cookies of DeathThis week I was saddened to read about peanut allergies killed two people. A college student in California, and a teenager in Wisconsin. Both of these people died because of peanut butter cookies. And that is what I am going to write about today. The most deadliest of threats that a person who has a severe allergy like me has to avoid. Cookies. Here's links to news articles:<br />
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<a href="http://www.washingtonpost.com/news/post-nation/wp/2014/11/28/college-student-dies-after-severe-allergic-reaction-to-peanut-butter/">http://www.washingtonpost.com/news/post-nation/wp/2014/11/28/college-student-dies-after-severe-allergic-reaction-to-peanut-butter/</a><br />
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<a href="http://fox6now.com/2014/11/28/milwaukee-teen-dies-week-after-allergic-reaction-to-peanut-butter-cookie/">http://fox6now.com/2014/11/28/milwaukee-teen-dies-week-after-allergic-reaction-to-peanut-butter-cookie/</a><br />
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For over 15 years, I have been seeking, searching, and reading every article about peanut allergy fatalities that I am able to find. Morbid curiosity? Not really. I want to know exactly how deadly exposure to peanut protein occurs, and the chain of events that leads to the death. And believe it or not, my extensive research has discovered the most dangerous food for a person like me. And that food is cookies. I remember a few years back reading about yet another peanut allergy death involving cookies, and I thought to myself: "Cookies. Always the cookies." <br />
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Reading about these most recent fatalities, I anxiously think back to my life. Had I put myself in a similar situation? Was I in a kitchen with peanut products that were out? I actually was in the past month. I was at a friends and there was a brownie cut in half with a peanut center on the cutting board on the counter. I told my friends about my allergy, and the brownie was put away, the counter cleaned, the cutting board and utensil put in the dishwasher. But what about the crumbs? The crumbs have been on the floor and I had been walking around in my socks. I chilled on the couch with my socks on later. Peanut protein could have gotten onto the couch. I could have touched the couch, and then my face. I could have died. <br />
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I really dodged a bullet. Because what happened to Chandler Swink could have happened to me. Reading about people who have died motivate me to take effective action to be as safe as possible living with this deadly condition. Most of the time people are understanding. But sometimes, people say very insensitive hurtful things about my allergy. There was this one guy I was seeing, told me he liked to eat peanuts, and that he was often too lazy to brush his teeth sometimes, and that he didn't want to see me anymore because he found my allergy inconvenient and wanted me to be 'safe.' Which was his choice, but the callous way he used my allergy as an excuse to discard me sucked. It was a good learning experience for me, because I need to be surrounded by people who love and support me, and I don't need cruel selfish people in my life. <br />
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But let's get back to cookies, which is what this blog post is all about. Cookies are a treat. Cookies are a fun thing to share. Cookies can often contain peanut butter. Cookies can kill. So where ever I go, if I see cookies, I am very, very cautious. Here's another news story about a cookie that killed:<br />
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<a href="http://abcnews.go.com/Health/Allergies/college-freshman-peanut-allergy-dies-eating-cookie/story?id=18723777">http://abcnews.go.com/Health/Allergies/college-freshman-peanut-allergy-dies-eating-cookie/story?id=18723777</a><br />
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Imagine the terror the people in Liberia go through with Ebola. People touch a contaminated surface, then touch their face, they could get the deadly virus. It's the same for a person like me who has a severe peanut allergy. Imagine walking through an Ebola ward in Sierra Leone without a hazmat suit on. This is how I feel walking through your kitchen when you have peanut products in it. Every surface is a potential reservoir for the protein. I usually carry gloves, and 'glove up' to protect myself if I feel there is danger of the protein touching my skin. I always carry my Epipen. It is never more than 90 seconds away from my body at all times. The 90 second rule, I call it. <br />
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My 90 second rule was inspired by a tragic peanut allergy fatality that occured in July 2008 in Magnuson Park, Seattle. Daniel Sargent took one bite of a peanut butter cookie, and 90 seconds later, he collapsed. I read everything about his death I could find. Some things I discovered: he was airlifted to Harborview, where his body was cooled and sedated for 24 hours. This treatment works for heart attack patients. They discovered that it did not help save him. Think about that. If my heart stops beating for non-allergy reasons, I have a greater chance of being revived at the hospital than if I went into anaphylactic shock. Here's a link:<br />
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<a href="http://wafeast.org/2010/09/conference-dedicated-to-daniel-sargent/">http://wafeast.org/2010/09/conference-dedicated-to-daniel-sargent/</a><br />
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If you don't have peanut allergies, and you want to help a loved one with peanut allergies, here's a simple thing you could do that aren't all that inconvenient and will prevent your loved ones from dying:<br />
-If you offer food, make sure that the food that you offer has an ingredient list that your allergic guest can read. Another rule I have: If I can't read the ingredients, I don't eat the food. <br />
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It is difficult to live with this deadly condition. It is important that we remember the people who have died. And we need to support allergy research to find a cure to stop this horrible allergy. Thank you for reading, and please subscribe to my blog.Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com0tag:blogger.com,1999:blog-6939575420265453132.post-91269245059187309832014-08-24T20:05:00.000-07:002016-09-05T12:22:10.472-07:00I Purchased an Affordable Epipen in CanadaI made a bunch of phone calls to see if the government regulatory agencies in the United States of America could help me get my Epipen covered at an affordable price. <br />
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I talked to Karen at the Washington State Office of Insurance. She explained that since I get my health insurance through my work, it is a self-funded plan and her organization had no authority to look into my case. <br />
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Karen gave me the number to the Department of Labor, which oversees self-funded insurance benefits. I called 1-866-444-3272 and I had a nice conversation with Andy at the Washington State Department of Labor. Andy explained that it was up to the employer what benefits to offer to their employees. He advised me to contact my employer and ask them for better coverage of life saving medicine. He said that the government does not have any control on what employers offer in their benefit plans. <br />
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Andy also suggested that I ask for a generic Epinephrine injection prescription. I told him that I wasn't really comfortable doing that. The generic is not really user friendly, and the last thing that I want to have happen when I am dying of anaphylactic shock is confusion while trying to administer the medicine. A lot of people, sadly mostly young children, have died because the person administering the epinephrine injection was confused and did it incorrectly. There is the Auvi-Q epinephrine of course, but it's a brand name and $550, which is completely unaffordable. <br />
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I learned that our for-profit health care system here in the USA only cares about profits.<br />
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Our health care system does not care about people that it serves. It exists solely for the purpose of generating more and more profits. Profits for the businesses that are too cheap and stingy to give their employees reasonable benefits. Profits for the drug companies, such as Mylan, who own patents that give them a right to completely overcharge people for Epipens. Profits for the health insurance companies such as Aetna, who gouge me $133 every month, and then use the fine print of their plans to refuse to cover life saving medicine. <br />
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I learned that I don't want to support our corrupt unjust system in the USA. You know what country has a fair and decent health care system? Canada! It's a socialized medicine Shangri-La. Canadian tax dollars go to free health care for all Canadian citizens. Well, mostly. It is more complicated than that, so check out <a href="http://en.wikipedia.org/wiki/Health_care_in_Canada">http://en.wikipedia.org/wiki/Health_care_in_Canada</a> if you want to learn more about their health care system. <br />
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You know what else? The Utopian country of Canada is not only nice to Canadian citizens by giving them free health care, they are also nice to other countries who are sick and need help. Just a few weeks ago, the Canadian government donated over 1000 experimental Ebola vaccines to fight the epidemic in West Africa!<br />
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<a href="http://www.nbcnews.com/storyline/ebola-virus-outbreak/bioethicist-canada-gives-ebola-vaccine-africa-how-will-it-be-n179871">http://www.nbcnews.com/storyline/ebola-virus-outbreak/bioethicist-canada-gives-ebola-vaccine-africa-how-will-it-be-n179871</a><br />
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Canada, by being the nice helpful country it is, just may save the entire human species from being wiped out from the Zaire Ebola virus. <br />
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So I want to support Canada.<br />
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I decided to travel to Canada and buy an Epipen there. I called Robin's Pharmacy in Vancover, B. C. and I asked how much an Epipen would be. They said I did not need a prescription, and that one Epipen would be $99.99. Sold! <br />
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So last Saturday, my friend Elcaset and I drove from Seattle to Canada and I bought my new Epipen. It was a fun road trip and I ate Poutine for the first time in my life.Yum.<br />
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Here is a picture of the beautiful Canadian sunset over Wreck Beach:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDoRgAqcggAcX8DN-B3qhI-rAJ33mavFeMMOSWystDbgmm2LgoWEApwLE4iupn0kP82EBsrNaPkjGRAM_2C7Sa3AEI9MMCgvSiVuc-5ZyIAd3xapajxpRcQOef9HGJOp-ycN42IC2KWb3s/s1600/20140816_200301.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDoRgAqcggAcX8DN-B3qhI-rAJ33mavFeMMOSWystDbgmm2LgoWEApwLE4iupn0kP82EBsrNaPkjGRAM_2C7Sa3AEI9MMCgvSiVuc-5ZyIAd3xapajxpRcQOef9HGJOp-ycN42IC2KWb3s/s1600/20140816_200301.jpg" width="320" /></a></div>
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Here's a picture of me in Stanley park:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhASsP5NdBzFZox_bJutbnKfAaMhgIA8aRcMJRROMETo9Qlx4zJneXWJQbj0rIef9XuBYZdR2alhGfFfqAJmnCglM1CRNOYwyRgkB4TSbJLko0zOteyoZCwvMyx3Bt6_KnKeg62DTOAQ2zB/s1600/20140816_185252.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhASsP5NdBzFZox_bJutbnKfAaMhgIA8aRcMJRROMETo9Qlx4zJneXWJQbj0rIef9XuBYZdR2alhGfFfqAJmnCglM1CRNOYwyRgkB4TSbJLko0zOteyoZCwvMyx3Bt6_KnKeg62DTOAQ2zB/s1600/20140816_185252.jpg" width="240" /></a></div>
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It was a totally fun road trip, and now I have an Epipen that isn't expired. My new Epipen is so awesome it won't expire until November of 2015. I need another Epipen of course, but now my doctor can write me a prescription for one and I can use Mylan's $100 coupon. </div>
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The issue of course is that life-saving epinephrine injections in the USA are completely unaffordable to working class people. There ought to be a law protecting people with deadly food allergies like me from being ripped off and gouged by big pharma corporations who overcharge for life saving medicine. It wasn't my choice to have a deadly food allergy! It isn't fair that I can't afford life saving medicine!</div>
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I intend to write to my Senator Patty Murray, and my Representative, Jim McDermott explaining my heart breaking situation, and imploring them to draft laws protecting working poor people like me from being financially exploited by evil corporations. Writing my congressman probably won't do anything because my representatives get a lot of their campaign money from health insurance and the health industry. Using the new greenhouse app extension on Google Chrome check out how much money the corporations and industries that are taking advantage of people like me are pumping into my representatives.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0ShBa3nZLhF7RRUKbeqK5SeVw-dmPcd2-VQbsJmB8jkulnXlfoW6KOvRwia99KfQv9X65M9rQHtb1zzglNPJhjTh3Ka-HLeN04ELAkt4e11XsBbCgbGEghpHHwpMKmRPz9LUEBNXMV2Jx/s1600/jim+greenhouse.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0ShBa3nZLhF7RRUKbeqK5SeVw-dmPcd2-VQbsJmB8jkulnXlfoW6KOvRwia99KfQv9X65M9rQHtb1zzglNPJhjTh3Ka-HLeN04ELAkt4e11XsBbCgbGEghpHHwpMKmRPz9LUEBNXMV2Jx/s1600/jim+greenhouse.jpg" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU5equECNZMlk8jkg1nJrVrfBVEOZralfZ1TI4xjtZlokida8N_IeZo6DpGbDfivkSfI73UNwuZAA4KFQMgbmU-REpMPs7Hvryhy_4Pkq5YJnkmzeE73FxRKNMJZnUTGmEXhXt1wfdhLTp/s1600/patty+greenhouse.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU5equECNZMlk8jkg1nJrVrfBVEOZralfZ1TI4xjtZlokida8N_IeZo6DpGbDfivkSfI73UNwuZAA4KFQMgbmU-REpMPs7Hvryhy_4Pkq5YJnkmzeE73FxRKNMJZnUTGmEXhXt1wfdhLTp/s1600/patty+greenhouse.jpg" width="206" /></a></div>
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I think the only way to change our system for the better is to take big money out of politics and overturn Citizen's United Vs. F. E. C. If you live in Washington State, check out this website to join me to change our system for the better:</div>
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<a href="http://www.wamend.org/">http://www.wamend.org</a></div>
Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com25tag:blogger.com,1999:blog-6939575420265453132.post-7125993772466447222014-08-02T16:00:00.003-07:002014-08-02T16:00:40.719-07:00I Can't Afford A New Epipen. I Could Die.<span style="font-family: Georgia, Times New Roman, serif;">An Epipen lasts a year. My Epipen expired at the end of March, 2014.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">On July 28th, I attempted to get a new Epipen. I ended up not getting it because it was too expensive. A new Epipen would cost me $351.73. That's about 30% of my paycheck. The reality of my situation is that if I purchased it, I would not have had enough money for food. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Georgia, Times New Roman, serif; font-size: small;">I can't afford my life saving medicine. I could die.</span></td></tr>
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<span style="font-family: Georgia, Times New Roman, serif;">I didn't think it would be so expensive. I have health insurance that I get through my job. I pay $135 a month for my portion of the insurance plan. I thought it would cover life-saving medicine like my Epipen. I called Aetna, my health insurance provider. I talked to Customer Service, and they transferred me to Prescription Customer Service. The Aetna Prescription lady explained to me that my Epipen was considered part of my deductible. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">'What? How can life saving medicine be part of my deductible?' I exclaimed loudly over the phone. I really was hoping that this was a mistake, and they'd tell me they realized this was an error, and cover the Epipen.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I studied the plans carefully when I signed up last year. I remember the $2500 deductible for health care services, such as hospital stays. I remember looking over the prescription drug coverage, and I do not remember seeing anything that said that prescription medicine had any sort of deductible. I sadly accepted that I would just have to pay out of pocket each time when I saw my therapist & psychiatrist, because my plan said it applied to my deductible. I can only afford to see my therapist once a year these days. I probably need to see my therapist more than that because of what transpired next over the phone.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">'I have prescription health care coverage! There is an Rx Bin number on my card! I've been paying $130 a month to Aetna for the past year and a half! How is it that Aetna is refusing to cover my life saving medicine?'</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The Aetna prescription customer service lady gave me zero compassion. She told me that I needed to meet the deductible. Then she told me that I was halfway to meeting my deductible for the year. This wasn't a horrible mistake. My worthless Aetna health insurance wasn't going to help pay for an Epipen. And here I was, a severely allergic person walking around with expired medication that may not work. I was up shit creek without a paddle.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I felt the full horror of my situation. Having been diagnosed with Idiopathic Anaphylaxis in August of 2011, I don't even need to eat anything to bring it on, I could go into shock and die at any time for no reason. My only hope for survival was the Epipen, and I was not going to be able to afford an Epipen.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Shock, disbelief, and total hopeless abject terror, are some of the emotions that I felt initially. I felt like the lady had read me my death sentence. Fear quickly became replaced with anger, and outrage at the injustice of the situation. How dare Aetna take my money every month and then refuse to cover medication I needed to live. And then I yelled at the lady over the phone in anger. I do not remember what I said, I could have even said a swear word or two. I went full on CAPSLOCK OF RAGE on this lady. I think I remember telling her that I would tell the entire world about how Aetna was trying to kill me by refusing to cover the Epipen. And then I hung up. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I feel bad for yelling at the lady, because it wasn't her fault personally that she worked for an evil for-profit corporation that had just essentially condemned me to death. I am trying to avoid yelling at people in anger these days and handle my emotions with skill and equanimity. But in that moment of fear and horror, I absolutely lost my shit.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">When I calmed down, I tried to find options to help me pay for my medicine. I called my doctor's office. The helpful lady at my allergists told me that a lot of their other patients were having trouble affording life saving epinephrine medications, and she could send me a couple of coupons for a small discount. She offered to ask the doctor to rewrite the prescription for a single Epipen. I told her that was not a good idea. My last anaphylactic reaction required 3 Epipen injections to stop my throat from closing up. My allergic reactions seem to be getting faster and more violent each time. What's the use of carrying a single dose, if it's not enough to save my life? She agreed and said she'd send me the coupons on Wednesday. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I went online and filled out an online form for a 0$ Copay 'free' Epipen on the Epipen website:</span><br />
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<a href="http://www.epipen.com/en/copay-offer"><span style="color: black; font-family: Georgia, Times New Roman, serif;">http://www.epipen.com/en/copay-offer</span></a><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Because I have my crappy Aetna health insurance, and it covers prescription medication I qualified only for a $100 discount. But the fine print on that coupon said: <span style="line-height: 19.600000381469727px;">This offer may not be combined with any other EpiPen coupon or savings offer.</span><span style="line-height: 19.600000381469727px;"> I wasn't going to be able to use the coupons my doctor's office was sending me. So my out of pocket cost for two new Epipens would only be reduced to $251.73. Could I swing that? Not really. </span></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="line-height: 19.600000381469727px;">The manufacturers of the Epipen, Mylan, have a patient assistance program that helps people afford their Epipens. I called </span><span style="line-height: 19.600000381469727px;">1‑800‑395‑3376 and talked to a Mylan representative who asked me questions. I didn't qualify for help through Mylan's program because my health insurance included prescription drug coverage. What? No it doesn't! I mean, Aetna says I have prescription drug coverage, but it won't pay for my Epipens. So that phone call and Mylan's patient assistance program is worthless. You'd pretty much have to be homeless, and not have any sort of drug coverage to qualify. </span></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Out of desperation I called the number on Healthcare.gov 1-800-318-2596</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The lady was nice. She said that since I qualified for three dismal cheap plans through my employer, I did not qualify for any plans through ACA. Great. I told her my situation and she told me to call the State Office of Insurance for Washington at 1-800-562-6900.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">They are open Monday through Friday and are closed today. I called and left a voice mail. I will blog again when I have an update. Thanks for reading. Please subscribe to my blog.</span>Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com16tag:blogger.com,1999:blog-6939575420265453132.post-72796047300691973702014-06-21T09:47:00.000-07:002014-06-21T09:48:44.893-07:00Hypoallergenic Peanuts are a Terrible Idea <span style="font-family: Georgia, Times New Roman, serif;">I've been seeing many articles on the web recently about how researchers are developing a hypoallergenic peanut. This company called Xemerge is hoping to commercialize an enzyme treatment that will reduce two key peanut allergens by up to 98 percent. Here is the link to the article that I recently read:</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.medicaldaily.com/peanut-allergy-relief-hypoallergenic-peanuts-may-maintain-nutrition-and-functionality-real-thing">http://www.medicaldaily.com/peanut-allergy-relief-hypoallergenic-peanuts-may-maintain-nutrition-and-functionality-real-thing</a></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;">I think hypoallergenic peanuts could be beneficial to people who are undergoing immunotherapy under a doctor's supervison to reduce or eliminate their peanut allergy. But the suggested uses go even further; the article goes on to say “Treated peanuts can be used as whole peanuts, in pieces or as flour to make foods containing peanuts safer for many people who are allergic,” Dr. Yu said." Are you kidding me? For people with severe peanut allergies, NO FOOD CONTAINING PEANUTS IS SAFE. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;">I think it's great that science has figured out a way to reduce two known peanut allergens. I would never eat this 'hypoallergenic' peanut: to me eating this thing would be like putting a gun to my head and pulling the trigger with a 2% chance I could die. So not worth it. I am extraordinarily sensitive to peanuts: in 2011 an accidentally ingested speck of peanut dust put me in the ER overnight and the ICU for a day. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;">And even if most peanuts were treated to make them hypoallergenic, and I was able to eat them in small amounts, this would make me dangerously comfortable and complacent. Hypoallergenic peanuts could make me lazy about being vigilant, and reading labels. Until that one day that I eat something containing peanuts that weren't hypoallergenic. I could die or get really sick. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;">Hypoallergenic peanuts provide a false sense of safety. People with severe peanut allergies need to be hyper-vigilant and mindful about everything they eat. Being conscientious and creating a routine to avoid deadly anaphylactic food allergies is a good thing: it keeps me alive. Hypoallergenic peanuts are not the answer. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;">Hypoallergenic peanuts won't be safe for me until every peanut on earth is hypoallergenic. And realistically that's not going to happen.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;">The truth is, I don't want to eat highly processed 'reduced-allergen' peanut products.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;">I want science to cure peanut allergies. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;">I want to be free. </span><br />
Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com0tag:blogger.com,1999:blog-6939575420265453132.post-32549180197720629942014-06-16T23:33:00.000-07:002014-06-18T09:44:54.627-07:00Peanut Allergy Blog Survival Shopping Tips<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">This evening, I went grocery shopping at Trader Joe’s. I am one of those peanut allergic people who does not happen to have a severe tree nut allergy. Sometimes, when I go shopping I buy raw walnuts and cashews for when I feel I need protein. And when I buy these nuts, I am completely unable to buy them from the bulk food section. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Buying tree nuts in bulk, when you have a deadly peanut allergy can kill a peanut allergic person, due to cross contamination with peanuts. It can also be messy and really uncomfortable. Once, I ate Macadamia nuts I purchased in bulk from Central Co-Op, and about a half hour later, I broke out in severe eczema and was itchy for a week. My skin looked like it was burned, and rashy itchy patches wept clear fluid. It felt like I was covered in mosquito bites. Whatever hell that I went through that week, it could have been worse, I could have died of anaphylaxis due to cross contamination. So I never, ever, eat any tree nuts from the bulk food section. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Unfortunately, because of this I have to endure paying more money for packaged nuts with labels on them saying if they were made in a peanut facility or not. Most of the time, I make this choice when I shop, because I prefer to eat a sustainable, eco-friendly, plant-based vegetarian diet when I cook for myself at home. And meat is awkward for me to cook, and I don’t really know how and don’t want to learn, because I cuddled with a chicken named Opal recently, and she was so sweet, and organic chicken was pretty much the only meat I taught myself how to cook and eat, so now I won’t eat chicken anymore, because it makes me feel sad to eat my gentle animal friends, so I don’t. </span></div>
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<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I get big packages of tree nuts from Trader Joe’s. Their nuts clearly state if they were made in a peanut facility or not(ornah). I buy Trader Joes’s nuts and snack crackers for all of my protein-carb munchie needs. But my anti-peanut allergy regimen does not stop when I purchase the food at the check out. I learned that lesson the hard way. The almost-died way. I have to take additional steps to make the packaged food safe for my consumption because of a deadly mistake I made in 2011.</span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">On August 16th, 2011 I purchased two cans of Blue Diamond Almonds from Albertsons on 130th & Highway 99 in Seattle, on my lunch break from work. After work, I cracked open a can of almonds and started snacking on them with my bare fingers while I driving to my mother’s house in Kirkland, Washington. I ate them happily, voraciously, and confidently: Blue Diamond Almonds are made in a peanut free facility. The drive was about 20 minutes. I arrived at my mother’s house and was talking and socializing with her.</span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Then my brother joined us and we continued talking. I started to feel itchy. I went into the bathroom, and there was a hive on my neck. I told my family I thought I was having an allergic reaction. My family told me I was crazy and freaking out over nothing. My mom and my brother told me to chill out because I was obviously having a panic attack.</span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I went in the bathroom again, and I started itching my stomach. The moderate itching resulted in a inordinate amount of blood at the surface of the skin: which I didn’t realize at the time, but I do now: increased capillary permeability was a sure sign of anaphylaxis. I left the bathroom, my single lone neck hive had multiplied into hundreds more hives on my torso, neck, and arms. My throat started to close up. I told them to call 911, which they did, but my brother remained in complete denial. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“This is not true anaphylaxis,” he reasoned, “this is not a rapidly progressing cascading reaction. It has been like 15 minutes from when you got that first hive to now. That does not fit the classical description of anaphylaxis.” I begged for the Epipen, and he refused to give it to me. My mother was on the phone to 911, at least she believed me. I actually was not doing this for attention because I was crazy, as they initially seemed to suggest. I struggled to breathe because my throat was rapidly closing up. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I was in such shock, I sat down on my mom’s kitchen floor and tried to stay conscious and keep breathing. Four younger firefighters and paramedics arrived. They started an I. V. and found it challenging and in the process sprayed my blood all over my mother’s remodeled kitchen shelves and floor. My poor mom. She looked on in shock and horror and disbelief. I begged them for the Epipen. My brother, an EMT, and in complete denial, explained to them that I was out of my mind and did not need it. I continued to use all of my willpower and energy to breathe. My throat continued to close up. The I. V. was in my arm at that point and a good portion of my poor mother’s kitchen was covered in the blood my veins had sprayed all over. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My mom’s expression at that time was one of shock and numbness, but it was mostly complete horror. I will never forget that expression for as long as I live. I continued to plead with them for an Epipen injection.</span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The tables on my anaphylactic reaction started to turn when the senior EMT Medic arrived at the scene. He seemed to have the most field experience with anaphylactic reactions. He was surprised that the medics had not given me the Epipen yet. The younger EMT Medic seemed to protest, but he raised his voice and said, </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“Nobody ever begs for an Epipen when they do not need it. Even if they do need it they try to talk themselves out of it. LOOK AT HER, she is exhibiting all of the signs of a severe allergic reaction: GIVE HER THE EPIPEN NOW!” </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The nice lady medic unsheathed the Epipen and rammed it into my right quadricep. It hurt like hell. The pain made me laugh. It hurt so bad it was ridiculous. The Epipen is a huge hypodermic needle and it shoots deep into your muscle with the force of a metal spring. Leaves a bruise that lasts for two weeks. I am grateful to this pain because it is way better than the other option: death. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And then, as if by magic, breathing got easier. I was loaded up into the ambulance, where I got a second shot of epinephrine. At the hospital I received a third. They also hooked up large doses of intravenous steroids and benadryl, pumped into my bloodstream every hour. The E. R. kept me overnight for observation, and in the early hours of the morning I was transferred to the ICU of Evergreen Hospital.</span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I continued to breathe oxygen and receive steroids and Benadryl intravenously for most of the next day. Around 6 they released me and my mom drove me back to her place, in her car, with my loving dog, Pork Chop, happy to see me alive, and licking my face. The hospital told me to avoid all tree nuts, as they believed tree nuts were the cause of my anaphylactic reaction. However, I was not so sure. I was sure this was not sudden onset tree nut allergies. It had to have been something else. But what?</span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I had a close call with death, and a 2 day hospital stay. Why? What was the reason? The employer I worked for at the time was an allergy testing lab, and my subsequent blood plasma showed no new tree nut allergies. I took that with a grain of salt, but I was still very curious. I booked an appointment with my allergist at Virginia Mason because I wanted answers. What happened? What set off the anaphylactic reaction? </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My allergist read my detailed notes of everything that happened that day when I went to see him in September. He has a ton of experience with peanut allergies. He received a grant from NIH to study peanut allergies. He is kind of a genius when it comes to allergies, and what he told me was extremely important to my subsequent survival. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My allergist agreed that yes, Blue Diamond Almonds were peanut free. However, in his experience, his patients developed anaphylactic reactions from Environmental ingestion. He explained to me that anaphylactic reactions were known to have been set off from tiny crumbs. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">He explained that someone who was shopping for groceries hours or days before me had been eating peanuts and had peanut crumbs on their hands and picked up the can of Blue Diamond Almonds, and decided not to purchase it, and put it back on the shelf. Then I came along and bought the can of almonds. When I opened the can, my fingers got tiny amounts of peanut protein on them. I ingested this tiny amount of peanut protein when I snacked on the almonds and went into anaphylactic shock. </span></div>
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<b style="font-weight: normal;"><br /></b></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The implications of his insight: I have to wash every bag of food I eat, eliminating the possibility of anaphylaxis from environmental causes such as peanut crumbs. This is a pain in the ass, but since I have started washing all food packages I buy, I have not experienced severe anaphylaxis. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<br /></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">So my peanut allergic (and those who have peanut allergic loved ones) friends, please be vigilant, and take the extra time to wash all of your food packages before you open and dig into them because unseen, tiny amounts of peanut protein on the outside could kill, if they get ingested. They almost did me. </span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">As always, thanks for reading. Subscribe to this blog, because all my writing is helpful and rad, and check out my Youtube Channel, </span><a href="http://www.youtube.com/demosure" style="text-decoration: none;"><span style="color: #1155cc; font-family: Arial; font-size: 15px; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">http://www.youtube.com/demosure</span></a><span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"> Also check out my Twitter: @demosure. And my Vine, I am “Denise Ure” on Vine. Thanks everybody, be careful out there and stay vigilant. Your fellow peanut allergy survivor, Denise Ure</span></div>
Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com0tag:blogger.com,1999:blog-6939575420265453132.post-35189342704625661292014-01-08T21:21:00.003-08:002014-01-09T21:30:33.282-08:00Danger at the Hotsprings Retreat -Surviving a Deadly Organic Vegetarian Feast<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">I went on vacation about six weeks ago. Which was weird
for me. Normally I just work. But I needed to Ctrl+Alt+Delete my
stress, my brain, and my awareness. So I booked a three day, four night
stay at Breitenbush Hot Springs in Oregon. Novelty and vacation is good for your brain like that. The kitchen provides
three delicious vegetarian meals a day.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">I told them about my anaphylactic
peanut allergy when I booked the trip. I told the people at the
front desk when I checked in. Before dinner that night, I knocked at
the door of the kitchen, and I introduced myself and explained about
cross contamination and my peanut allergy. I tried to be as friendly
and cute as I possibly could. I realize my allergy is inconvenient
and being super nice and cute makes people like you. Most of all: it
helps win people over, get them on your side. Being cute and nice
helps you survive.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">Living for over 33 years with an
extremely severe food allergy I have consciously made the choice not
to be demanding, insisting, nasty, or rude when I am explaining to
people about the extreme severity of my peanut allergy. I am down to Earth.
I am compassionate and sweet and I smile a lot. I sometimes show the
cooks my Epipen and tell them about the time I was in the hospital
for two days because I accidentally ingested a crumb of peanut
protein so small I couldn't even see it.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">I didn't choose to have peanut allergy
and I'd really rather not have it. I hate it when I inconvenience
others. I try to be really, really nice about it. I am really old
and so far this strategy has been extremely effective.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">I was having a great relaxing time on
the retreat. I discovered a cool trick: at 9 at night, floating in
the pool on my back looking up at the billions of stars. The air was
so clear I could see the milky way galaxy stretch all the way across
the sky in splattered white paint like a Jackson Pollack painting.
Totally zen and completely beautiful. I was floating and looking up
at the night sky. Not touching anything. Felt like I was floating
through outer space! It really did. Awesome feeling. Great soak.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">The next day, after breakfast, I went
on a two and a half mile hike. Uphill and downhill and uneven
terrain on frozen ground. I turned back at the river. The bridge
over the fast flowing river was frozen with a thick layer of frost.
And the rickety bridge only had one rail. I decided not to risk
crossing the bridge. I could slip and fall into the fast flowing
rapids below. If anything, my allergy has taught me caution, and
I've tried to live mindfully and make wise choices, rather than
living in constant fear.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">When I returned to Breitenbush for
lunch, I was starving. I was ravenous. I was hungry. And I wanted
hot food. The springs are located in the mountains and the warmest
it got on the hike was probably 20 degrees.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">I went to the meal hall in the main
lodge and I got in line. While in line, I leisurely grabbed the
ingredients binder and started reading the ingredients. Then I read
one word and my heart skipped a beat. The worst word I have ever
read: peanuts. There were peanuts in the buffet food. There would
be people eating peanuts at all the tables. I threw the binder on
the table and got the fuck out of there. Relaxation and my sense of
safety disappeared. I was kind of upset. I told everybody about
this, and yet I am still in danger, I thought to myself.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">It was too dangerous for me to be in
the dining room. Little kids with peanut crumbs on their hands
touching everything. And the peanuts were stir fried. That awful
smell of cooked peanuts. I have smelled people who have died, and
honestly I'd rather smell dead people than peanuts.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">When I smell peanuts, I do not want to
breathe. I quickly put on my warm clothes and I left the dining room
and walked to the kitchen building. I knocked and then when I was
inside, I told them about my allergy. Again. The lady cook was
like, it should be fine, the peanuts are only in one dish. I started
crying. This was a buffet dish that the peanuts were in. Deadly
peanuts were in a tray next to every other food. All kinds of cross
contamination hazards right there. Had I listened to the cook, who
was trying to be nice to me I would be dead. This kitchen did not
understand anaphylactic food allergies. This was so ironic, here
they were serving organic vegetarian food to people because it was
healthier and they didn't even get that they could kill people with
cross contamination of an allergenic food.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">I realized that I was not going to be
eating with other people for this meal, and I started crying even harder.
I was starving. I was not going to be able to eat. The main chef
took me into the back cooler and she made me a big salad out of the
separated ingredients in airtight plastic trays. She explained that
this food was in sealed containers in the refrigerator while the
peanut stir fry was cooking. This salad was going to be safe for me
to eat. She was nice.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">I took the salad and I carried it to a
picnic table outside. I was not risking going into the peanut
infested dining room. The temperature had climbed to about 25
degrees Fahrenheit (-5 degrees Celcius.) I was wearing insulated
gloves, but it was so cold my fingers went dead. After three minutes
of eating I could not feel them. They were white to the touch and
numb. After lunch, my fingers eventually came back to life after a
later soak in the hot springs, but it was painful. Needles and pins.
I was very cold.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">I was looking forward to a hot meal. I
was looking forward to eating in community. I was kind of hoping to
feel a little safe. I felt a little betrayed and hurt.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">Although I wanted hot food and to be
warm, above all else, I wanted to stay alive. To get my primary need
of survival met, I was going to have to suffer. A lot. And I did.
The good news is that I lived.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">But the good news does not end at my
mere survival. It keeps getting better: a nice lady from Bend,
Oregon saw me sitting outside in the cold, and she took her lunch
outside and sat next to me and talked to me while we ate lunch. Her
name was Kiya, and she was so nice to me. When we were done eating,
after I told her about my allergy, she took my salad bowl to the dish
tray inside the dining room. She was a school teacher, and I am very
grateful for her kindness. She made me feel better and kept me
company when I was so very cold and alone.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">The rest of the day, in the lodge, in
the dining room, I was going to have to be extra careful. Extra
mindful. I washed my hands after touching any surface in the
building, and made an effort not to touch my eyes, face, or mouth.
Peanut protein can cause anaphylaxis via contact allergy at these
points. My relaxing retreat had turned into trying to avoid death by
cross contamination.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">Even with my extreme caution, and
drastic measures, I could not sleep the night. My skin was so itchy.
I woke up from bad sleep the next morning with eczema. Extremely
tired. I could not sleep well because I felt like I was
covered with mosquito bites. That was the only symptom though, no
asthma, no wheezing, no throat closing up feeling, it was definitely
not anaphylaxis. Just a mild reaction. I am lucky. I guess I
should have left the resort after the peanuts and drove home, but I
didn't. I get eczema all over my body from skin contact with peanut
protein. It hurts a lot.
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Georgia, Times New Roman, serif;">So this is my tale: of lethal danger,
of survival, of kindness and compassion. I hoped you liked it. If
you or someone you love is affected by peanut allergy, please share
this on every social media site that you frequent. My goal is to
help other people survive this.
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<span style="font-family: Georgia, Times New Roman, serif;">There is an extreme amount of suffering
that comes with this allergy. Isolation. Loneliness. The feeling
of having your trust betrayed by people who thought it was okay to
put your deadly allergen on the buffet line.
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<span style="font-family: Georgia, 'Times New Roman', serif;">My hope is that one day every state in
the USA would require everybody that has a 'Food Handler's' permit to
be educated about food allergies and the dangers of cross
contamination. Thanks for reading, and please subscribe to my blog
for more fascinating stories from the front lines of peanut allergy
survival. </span>Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com0Breitenbush Hot Springs, Oregon, USA44.7828992 -121.9789632000000119.260864700000003 -163.2875572 70.3049337 -80.67036920000001tag:blogger.com,1999:blog-6939575420265453132.post-65766276808194819462013-11-19T19:36:00.001-08:002013-11-19T19:36:25.957-08:00Last Tuesday Night in the Emergency Room -Peanut Butter Apple<span style="font-family: Georgia, Times New Roman, serif;">Spent last Tuesday in the ER...</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">So I got home from work late on Tuesday night. I walked my dog. I threw a frozen pizza in the toaster, and I washed off an apple I purchased from Whole Foods. I was tired and hungry and did not do a very good job of it. I put on a little soap and lightly rinsed. Pizza smelled good. The apple was a "Red Tango" apple. I took one bite. And then started freaking the freak out. It tasted like that indescribable rich nutty taste of peanut butter. Which is the most horrible taste in the world if you have an anaphalactic peanut allergy. My throat felt like it was closing up. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">But wait. I grabbed my Epipen and held it to my leg. I stopped. Throat felt tight. The throat feeling was just that: a feeling. I needed more evidence before I shot myself up with that horrible thing. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The throat closing up feeling alone is not a sign to warrant an epipen injection. I need more than that. The feeling of my throat closing up is a psychological problem, not an anaphylactic reaction. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I needed one other symptom from my body to let me know if I needed the epipen. From my digestive system (vomiting, diarrhea), my skin (swollen lips and/or hives), or respiratory system (asthma and wheezing). </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I threw my cooked pizza on a cutting board, put the poison apple in a plastic bag, took my epipens and insurance cards, took a benadryl and got in the car and started driving to the E. R. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">When I got to the E. R. I parked in the temporary check-in parking spot and I went to the registration desk of the Emergency room of the U. W. hospital in Seattle, Washington. I told the lady at the registration desk that I was experiencing one symptom of anaphylaxis, and that if I experienced any more, I would need life saving medical care. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The nurse behind her looked at me like I was nuts. Most medical people suggest that if you even suspect an anaphylactic reaction, to administer the epipen and seek emergency medical care. But I knew my body. I have been allergic to peanuts for 33 years. My body gave me tiny signs, but not the extreme symptoms that warranted emergency medical care. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I didn't really want to spend the night in the E. R. I know the drill. It has happened over 30 times. Who wants to spend 6-10 hours in the Emergency Room? When you are in the E. R. with an anaphylactic reaction you are a prisoner. You have no freedom. You are at the mercy of the doctors and nurses. Usually I am in such bad shape that I am most grateful and I do not care about freedom or not. I just want to live another day. But tonight I was not going to subject myself to unnecessary imprisonment if I didn't have to. I had things I had to do the next morning. I wanted a good night's sleep. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I already have extreme medical bills that I am not able to pay. I didn't want to add to my bills if I could help it. I am planning to declare medical bankruptcy. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">When I was out of a job in 2011, I applied for Medicaid. Extreme peanut allergy is a disability, and I needed medical care if I went into anaphylactic shock. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Medicaid denied my claim. They said my anaphylactic peanut allergy was not considered disabled enough to qualify. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I got a low paying job (12.00 an hour). After 90 days of working there I qualified for the company's cheap, terrible medical coverage. The week before my health insurance coverage activated, I went into anaphylactic shock. Twice. One was an overnight E. R. stay with another day in the ICU. Over $25,000 in hospital bills right there. I can't afford to pay that. I applied for "Charity care" because my job was so low paying and one of the bills was reduced to 4,000. I still couldn't afford to pay that. So I have bill collectors hounding me 5 times a day. Kind of stressful.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">All because I have severe allergies and I live in the United States of America. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">This country has great emergency health care. I think health insurance companies are the worst, most horrible companies ever. They will do anything and everything to weasel out of paying claims and stick you with the bill. They have done this to me so many times. I really don't like Obama care because we are now required by law to support evil corporations who kill people by denying them coverage. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I believe that the only reasonable solution is to expand Medicare to cover everybody in the U. S. Health care is a human right like drinking water. There needs to be a constitutional amendment disbanding horrible health insurance companies and expanding Medicare to every citizen of the U. S. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Anyways, in the meantime, in my poverty and continued struggle with paying my medical bills, I will declare medical bankruptcy. I am not ashamed. I am ashamed to live in this messed up country and unjust corrupt system. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I intend to proudly, happily, joyously declare bankruptcy. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I have peanut allergy and I can't afford to pay the expensive bills. I wish I didn't have peanut allergy. I really do. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The last time I went into anaphylactic shock I actually asked my family NOT to take me to the hospital. I told them that I didn't have health insurance and that I couldn't afford the emergency room. Of course they ignored me. I wasn't really being serious, I was just making a statement about how messed up our health system is for people like me. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Anyways to the end of the story of the E. R. last Tuesday: the symptoms didn't get worse, I left after about an hour and a half. The half assed soapy wash I gave the apple must have gotten the proteins off. The awful, rich, nutty taste of peanut butter in my mouth was likely the oils in the peanut butter, which are not enough to set off a reaction. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">This story is not medical advice, just my story. I'll put in the standard disclaimer at the end of this.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">If you have severe, life-threatening allergies and medical bills you can't afford to pay, I encourage you to declare medical bankruptcy. Thank you for reading. Please subscribe.</span><br />
<br />Mr. DemoSurehttp://www.blogger.com/profile/05446628071877761483noreply@blogger.com0