Sunday, September 22, 2013

You Know You Have a Severe Corn Allergy When (list in progress)

1. You burst into tears of joy when a friend working on an organic farm offers to work with their butcher to get you safely processed food. 

2. Your CSA (weekly box of safe food) packs a separate box of food for you during corn season. And transports it in the front of the truck. 

3. You've heard of the new restaurants but they don't make up part of your mental map. There are zones that are just blank (food for other people here) blocks in your mind. 

4. You think of movie theaters and Mexican restaurants, with all the airborne corn proteins, as the Death Zone. 

5. You know the places where you can get a safe sparkling water in a bottle when you go out with friends. 

6. You have colleagues that you think of as poisonous, not for the quality of their work or their content of their character -- because of their cologne or perfume or soap or shampoo or dryer sheets or makeup or all of the above that is fragrantly off-gassing corn all day long. 

7. Your decision to attend an event includes figuring in both the likelyhood of a severe reaction and how long you will be sick afterward from exposure to "environmental" corn. 

8. You love people but hate their chemical-flowers-in-a-can smell. 

9. You have two first aid-kits in your car, one corn-free one for you and one for other people. 

10.  Your friends have created rules and earn point for not killing you. (My game is called DNKC -- Do NOT Kill Christine (tm). Yes, there are prizes. It used to be called Try Not to Kill Christine, but it was pointed out that the title was a bit pessimistic and Yoda would not approve.)

11. You have flinched when hugging/kissing an adored relative  because you touched your cheek to their face powder or got their lipstick on you. As the hives start popping out, you just keep smiling and ignore it for as long as possible. 

12. You know how long you can go without scratching in public once the itching has gotten to the "like a monkey" stage. 

13. You wonder if it would be appropriate to send holiday cards to your compounding pharmacy and your great doctor's office. Valentines Day might see a bit odd, but you do <3 them for helping you stay alive.  

14.  The day that Organic Valley started adding corn to their whole milk (aka. Vitamins A & D) was a day of mourning for you. 

15. You are still holding a grudge against Enjoy Life for not taking your report of a severe allergic reaction seriously in 2007, and ignoring/denying the continuing reports of many, many other corn allergy folks in the ensuing years. Nope, now that their chocolate is listed as "May contain traces of corn" in 2013 after they publicly denied it for 5 years --their  credibility far from restored. Can't believe they spend so much $ on marketing their product as allergy food and have such horrible protocol for dealing with reported reactions. 

16. You love Annie's Organics because of how wonderfully they dealt with a reaction report. (I'm still impressed years later wih how they dealt w mine -- they were concerned, researched the issue, made a correction with a new supplier, reported back. And 6 years later I recommend their products that I can't eat to people who can. Kudos to Annie's Organic's.) 

17. You know that if a product says "Corn Free" on the label, it's probably not. 

18. Recipes that are promoted as allergy safe including "Corn Free" make you laugh. 

19. You play "find the corn" on food labels for fun, not because you actually thought you could eat it. 

20.  You have learned how to cook/can/dry/grow/distill your own food. 

21.  You know more about our food system than you ever wanted to know about any industrial process. 

22. You don't think of yourself as a foodie or a control freak, but if: you don't know where it came from; how it was grown; what happened to it post harvest; and you didn't prepare it -- you surely are not going to eat it. 

23. You have a beauty regimen that consists of a soap, shampoo/conditioner,  food grade oil for moisturizer, deoderant  and safe toothpaste. (The oil may be the only item you can buy easily in your local grocery store). 

24.  Your lunch looks and tastes better than the leftovers everyone else brings to the office. You don't share. 

25. You would rather be hungry for a few hours than eat somehow that will make you sick. It probably won't kill you to miss a meal, but an anaphylactic reaction just might. 

Sunday, January 6, 2013

Let's talk about it!

In the past few weeks I've received a few emails from people just starting out on their corn allergy journey. While I don't wish a food allergy on anyone, I do get get the fun of sounding like a grumpy old timer.  I like to fire up the Commodore 64 and reply, "Back when I was diagnosed, there wasn't anything on the internet for people with corn allergies. Just advice from the allergist on not eating popcorn and corn chips! Get away from that processed food before you drop dead."  I usually like to follow up such sage comments by putting on mom jeans, black socks, brown sandals and yelling at those darn kids to get off my lawn.

In the interest of being a good corn-free citizen who has survived an entire decade with a corn allergy and is now enjoying a large corn-allergy and corn intolerant community on the web here are a few good spots to hang out while figuring out how to live a corn-free life.

Facebook:
Corn Allergy and Intolerance Group  https://www.facebook.com/groups/cornallergy/
I recomend this group as an interesting place to start for people with either a corn allergy  or intolerance. Lots of people with different levels and types of reactions and good discussions. The group varries from people with a strict scientific testing perspective to people who are willing to try anything labeled a cure so there are lots of interesting discussions. Very friendly and helpful members who share info and support one another. The majority of very active posters are from North America, but there are members from across the globe.
Some group jargon that will help you communicate and understand a typical phrase that would be put at the end of a post about a product. If I posted saying something was safe for me, I might write: "I am a swift reactor to contact, inhalation and ingestion, only allergic to corn. I'm corn free, I can't do corn-lite at all!"

 Corn Lite: You can eat some foods that are cross contaminated with corn in the processing or have a small amount of corn derivatives and are either ok or willing to put up with the discomfort. Mostly people with a food intolerance or a non-anayphyactic allergy.

Corn Free:You (try to) avoid all corn containing products. Usually due to severe allergies and/or anaphylactic reactions.

Reaction Levels: immediate or swift reactor  vs slow or delayed reactor -- this is the amount of time it takes you to develop symptoms to exposure to your allergen, it can be min. for an allergy or much longer in the case of food intolerances.

Sensitive to: Contact (skin), Inhalation (fumes/dust), Ingested (food)

Corn Allergy Awareness https://www.facebook.com/groups/60220625854/
Smaller group, more focus on Canadian products but lots of cross over with the Corn Allergy fb group. Same friendly and helpful vibe as above.

Corn Freedom https://www.facebook.com/pages/corn-freedom/264504334407
Take this page with a grain of salt -- this mom w/ a corn allergic or intolerant child is interested in advocacy, which is great, but is at the beginning of her food allergy journey and IN MY OPINION still is eating/feeding a lot of corn intensive products and mistakenly promoting them as corn free. It may be that her child is able to tolerate corn lite foods, but she sees them as corn free -- it is a typical part of the journey and she is getting more comments from people with more experience w/ corn allergy.  As with any food recommendation -- use caution. More interesting to watch than to participate in for me.
 

Good FB Info pages -- not all corn specific

Corn Free Foods List https://www.facebook.com/CornFreeFoods NOT all corn free, many products are just low corn/corn lite and are tolerated by people with a corn intolerance and need to be tested CAREFULLY by you! There are only 4 safes thing for me on the the entire list, so proceed with caution. This is a good place to start if you are trying to find safe foods, but may foods on there need to be retested.  There is a visual Pinterest board maintained by fb folks that is a little more up to date -- http://pinterest.com/stripeysocks/corn-free-visual-the-list/ Assume EVERYTHING is corn-lite and test carefully. It is a good starting point but don't assume that anything is totally safe for you.

Asthma and Allergy Foundation https://www.facebook.com/AAFANational  Good info feed.

Team Anaphylaxis  https://www.facebook.com/pages/Team-Anaphylaxis/159511227477594  Mostly focused on advocating for children's issues, good info for communicating about threatening allergies.

Food Allergy Mom Doc https://www.facebook.com/FoodAllergyMomDoc  Interesting and thought provoking posts from a doc w/ two allergic children.

 American Academy of Allergy Asthma and Immunology https://www.facebook.com/AmericanAcademyofAllergyAsthmaandImmunology 
Good info on current research for people w/ a science background.

_______________
Outside of Facebook
Avoiding Corn Forum on Delphi -- http://forums.delphiforums.com/avoidingcorn/start  The long running, sprawling and full of info forum. There is talk of the hosting platform transferring to a more usable format for mobile devices.

You are not alone! Feel free to send me an email (cornallergy at gmail (dot) com ) and go connect with some of your peers.

Monday, October 15, 2012

Feeling a bit blasé?

I poisoned my self quite nicely this weekend. A combination of impatience and excitement led me to overlook how long I should let the glue dry on my scuba equipment before I got it near me under pressure.

Fortunately for me, our wonderful scuba gear guru for the club came over to do all the hazardous material handling -- acetone and silicone glue, even taking the drysuit outside at 10:30 at night so that the acetone fumes would not come into the house! What a guy! I, unfortunately, did not think through how long I had let this glue cure and get washed out the last time I had used it to repair a wetsuit. This time it was going to be pretty close to me, pressurized inside a drysuit -- I should have let it cure for a a few days and washed it for a few more before getting it anywhere close to me. I am now paying for that little lapse of judgement. Also -- I was feeling a bit indisputable since I have been eating prednisone and zantac like skittles to survive a big gala at work.. All and all a recipe for disaster. Hoist by my own petard, mas non?

So, now on day 3 of having hands like catechers mitts and a face like a basket ball, sporty but uncomfortable, I was ready for hypocondria search time on the interwebs. Just looking for a way to reduce swelling post reaction -- I know what I did and that clearly I'm a horrible warning and menace to myself. No need to remind me.
I may, however, may be getting a bit too blasé about this whole "life threatening allergy" concept.
The first answer I found, on WebMD, "Allergic reaction. Sudden swelling of the hands and face may be a severe allergic reaction (anaphylaxis) and needs immediate medical evaluation."

The first thought that popped into my head, "I can breathe, it's not an emergency. This is useless."

When is it an emergency? I noticed during our second descent that I was working too hard and using my air quickly. I was having some issues and brought my buddy back to the surface after about 10 min since we were just doing a quick tour around the shallows to adjust some equipment. Since I felt off, I opted to hang out while the instructor took him out to test his navigation skills. I hung around near the shore testing my new valve and just floating around checking out the adjustments to the suit to make sure nothing was leaking.

When they came back to shore, my instructor noticed that I looked odd -- I told him that I thought was breathing a bit to hard on the easy dive and was going to drink something hot and see how I felt. Also, I opened the neck seal on my suit to see if I was just asphyxiating a just little from being sealed in too well.

Is is a fish or Christine having a reaction?
My buddy and I slogged our way back up the hill (this is cold water quarry diving -- drysuits or 5-7mm wetsuits are de rigueur pretty much year round) -- leaving our gear at the bottom for the next dive. Not thinking that I was having a reaction, I was SHOCKED when I saw my face in the window of the SUV. I looked like an unhappy grouper -- mottled skin and puffy puffy lips. As much as I like the fish, I really don't want to look like one of those guys!

My dive buddy, who was working on his skills for his advanced certification, clearly earned his advanced allergy card that day.  All I said was "I think I'm having a reaction to my suit, I need to get out of it."  He dropped his sandwich on the ground and was ready to jab me with a the epi-pen, cut me out of my suit (Please, please, please,  no holes in the drysuit!) or grab the oxygen tank and crank it up in a flash. Had I needed any serious assistance I would have been in good shape. But I was already popping my meds, proceeding calmly and waiting till I could get a hand to get the neck zippers open calmly and carefully, since I'm still looking for a corn-free wax for the zippers.  Not only did he get me divested of my corn-y gear in record time, he carried my tanks and heavy gear back up the hill while I staggered around while the corn-free Benadryl was kicking in -- and then he drove my car back home. That is major points in Do Not Kill Christine.

So when is it an emergency? I'm getting good at staying calm and watching what is going on, probably because I don't want to: 1. accidentally drop dead, 2. unnecessarily use the Epi-pen.  That's a very fine line.  It can be a bit of an out of body experience to watch yourself be almost consumed by the sensation that you choking and the concomitant urge to run in circles making the international throat-grabbing sign for "I. Can't. Breathe! while instead keeping your butt planted in your seat and  slowly counting your inhales and exhales. Calm, Slow, In, Out. I'm breathing. My nail beds are not blue. It's not really an emergency.

For me, there are two signs that it is time to crack out the Epi-pens.  When, after a few moment (that feel like years) I can't catch my breath after I've moved into the easy-breather position -- head toward knees, shoulders moving up and down with each inhale in an effort to make more space -- and and I'm getting confused about what to do. At that point it is hard to remember that when I can't figure out what to do, it is a sign that it is Epi-pen time. The other sign is the "feeling of impending doom" or just the plain old "Oh $h*%" feeling where it becomes clear that this is not going to end well.

Then it is Epi-Pen time.Uncap, swing and jab firmly into thigh. Fight the urge to pull it out at the first sting and count to ten.  By the time I get to eight, that band that has been tightening around my ribs and the squeeking stiffnes in my lungs has disapeared. The world starts to swing back into focus on nine and by ten, I'm gulping in a full breath and so so so so very happy that I can get so very much air into my so very open lungs. Bliss for a moment or two, while I grab my allergy buddy and head off to the ER to get stabilized.

 I've had two rebound reactions, so I'm a big believer in following up with IV prednisone, benadryl and a nice nebulizer of albuterol or xopenex.  And in theory being observed for the next 6 hours. That depends on the ER. I have had a few reactions where I can see in retrospect that Epi-Pen would have been a good idea, but it ended well and I had a watcher with me at the time. I just didn't want to go spend the next 8 hours in the ER particularly on a weekend night when it would be full of the drunk/drugged/overdosed/crazed. Afternoons are a much better time.  But really, that should not be a factor in the decision.

Not every reaction sets off the entire cascade where I need to go to defcon-whatever and jab myself with adrenaline, and I do live VERY carefully.  When it does, I am SO grateful that to have Epi-pens. I'm even more grateful to my absolute rockstar friends who will jab me, since it is hard for me not to flinch and pull the pen back out when it stings.   That's a real friend.

Today I look like a cross between an unhappy grouper and a baseball beta-version of Edward Sissorhands. I'm conjested and less than 100%, but I can breathe.  This is not an emergency and not likely to become one unless my fashion crisis, of wanting to wear a retro hat w/ a veil till I look less pelagic, counts.

When is it an emergency for you?


A handy site that lets you prepare a customized anaphylaxis / Epi-pen action plan: https://allergysafecommunities.ca/pages/emergency-form.asp

You can add your photo, specific allergy information and 3 emergency contacts.  There are also fill in the blank sheets with Epi or Twinject instructions available
https://allergysafecommunities.ca/pages/default.asp?catid=38


Saturday, October 6, 2012

It's just food --people!

I've been quiet for a while. While I've had plenty to say, it hasn't felt appropriate for a public forum. Why? Because I am cranky. Having a food allergy is not easy, particularly one where that food protein is not broken down when it is fractionated for industrial uses (glue, cleaning chemicals, fragrances) so that you always need to be on guard. It is not easy to avoid these things, particularly if you 1. Work 2. Socialize 3. Go to school 4. Leave your house.

Right now I'm in the car outside of a funeral home. I'm going to the outdoor service but avoiding the jammed together with perfume and makeup wearing people part of the day. Hugs and kisses will be bad enough for my over active immune system. There is only so much you can do to change the behavior of elderly relatives who wear powder, perfume and lipstick and give you a big smooch on the cheek when the see you -- I'm happy to see them no matter what the occasion and as long as I'm not turning blue and flopping around on the floor, I'm ok with the fact that I'm going to have a hard time breathing for a few days after I touch them. Que Serra. There is only so much you can control.

What we can control, as food allergic people and food allergy parents is the food we eat and feed to our children. I've been both worried and dismayed by the number of people 1. are willing to "cheat" or regularly eat "corn lite" and admit to eating/feeding things they know are not safe to their children 2. . seem confused and surprised by how reactive and generally ill they are 3. spend a great deal of time and money on substitutes for "normal" food.

This is not just a corn allergy phenomenon, Ira Glass did a intro segment on This American Life with clips of people with food allergies who regularly wind up in the ER because they knowingly eat food they are allergic to -- repeatedly. Holy Flying Monkeys People! IT'S JUST FOOD! Living without a single food is not going to kill you, eating it just might.

With the corn allergy, I'm constantly exposed to blind tests where I will react to something in the air or on my skin. At this point, I can't imaging willing eating a handful of popcorn or biting into an ear of corn on the cob -- even though I can remember how good they tasted.

It's just food. I'm not starving. I really like breathing. I live in the US, I have access to locally grown corn-free organic fruit and veggies that I fortunately can afford to buy (instead of expensive shoes). Why should poison my food just because I'd like some mayonnaise on my tomatoes? I just don't know.

Seriously? It's just food! Have a food allergy? Do the hard sleuthing to find out what is safe for you. Eat that.

Please don't poison yourself knowingly. Is there something you love to eat that makes you or your child sick? It is poisonous to you/her/him. Poison. Period.

Be healthy. Live long. Prosper.



Saturday, April 16, 2011

Wecome to Absurdia

I blame a lot of my physical problem on stress and too often refuse to fully believe that I'm having a problem unless I can observe some sort of symptom (fever, racing pulse, swollen lips...). This is yet another reason I am the HORRIBLE warning, rather than the good example -- my history shows I'll slog till I'm seriously sick and whine about feeling cruddy along the way. Pleasant for everyone, effective coddling for the germs or histamine trying to takeover my body. I may be creating my own strain of supergerms that are strengthened by whining and caffeine.

Yesterday morning I was just going to make it on time to work when I got stuck in traffic. The normally swift moving highway went from creeping along to a complete standstill. As I sat there worrying about being late and trying (unsuccessfully) to log onto my work email via phone I started to feel the beginnings of a reaction-- tingly lips, painful joints, itchy throat. It wasn't something I eaten, since I'd postponed breakfast in favor of taking the dog for a springtime run. I had a paranoid thought that it was the exhaust from all the cars sitting still and made sure the air was on recirculate.

After a lifetime in traffic I finally approached my exit, where rubberneckers slowed things further with taking time to gape at a the accident made frighteningly beautiful by firetrucks spraying shimmering arcs of water over the highway onto a flaming tanker. As the full trucks sped back down the highway in a water-relay, police directed morning commuters slowly through the exit.

Chest tight and throat itching, I finally made it into the office where I can top off my daily dose of allergy meds and histamine blockers. I start digging through my in-box and get an email that puts me at risk for a cerebral aneurysm -- I can blame my slowly worsening symptoms on this.

Feeling like I'm on the edge of a major reaction make me nervous, which has the potential to make things worse. I do a little yoga breathing and take care of a few happier items before calling my direct teammate in the main office. "Amy." She has a friend with mega-allergies and a husband who is an ER doc and a good sense of humor, thus she can be relied on to be the voice of sanity. I call her to update her on my having made it into the office and joke that that everything will be fine as long as its not a popcorn truck that is burning.

Despite my pledge to keep my whining to a minimum, I'm tell the only other person in the office (my wonderful emergency contact) that I don't feel so good when she says makes the connection to the burning tanker truck. I honestly don't think a popcorn truck is on fire and the 10% ethanol gasoline in even the biggest truck engine would have burned away so quickly that it can not possible bother me.

Welcome to Absurdia.

She quickly finds the news: Ethanol Tanker Crash -- 8,000 gallons of ethanol are burning about half a mile (800 meters) from our office. Fire crews are keeping it under control while the fumes burn off. The highway will be closed for the next 5 hours as the truck burns.

I need to have my passport stamped, clearly we are not it Kansas any more.

I'm visiting Absurdia today. The thing I'm deathly allergic to is spilling on the ground, putting fumes into the air and ON FIRE across a big field from my office. That's why my lips are pufffed up and my throat itches. That's why my chest is tight. That's why I'm dizzy. That's..uh....it could EXPLODE!! OH. For. Pete's. Freaking, Sake. 8,000 gallons of CORN on FIRE is a terrible, horrible, no good, very bad day in anyone's book.

The good news is I'm not at risk for an aneurysm (today)...I can stay and hope that this is as bad as it gets. Or I get the heck out of dodge before something worse happens -- like the tanker exploding. I may think my job is important but there is nothing that requires me to risk my life, we are not preforming surgery or talking people off ledges.

Epi-Pen in hand, I take a couple wal-dryl* and drive home (not recommended procedure) to put my head under the pillow till I feel ready to deal with Absurdia. I may be having culture shock.

Wonder if I'll need a visa and shots if I'm staying for awhile.




*Walgrenes benadryl -- listed as "virtually" corn-free on the corn free foods list

Thursday, November 26, 2009

The blessings of food allergies

While it may seem easy and obvious to be grateful for the lessons of a food allergy and for being able to find locally grown, safe organic food -- I'm thankful, I'm grateful and I'm enjoying the blessings of a severe corn allergy this Thanksgiving.

I may not be so thankful this evening after being around 21 regular people who wear makeup, perfume, and use scented detergent. At this moment, I'm happy, I'm healthy and I'm full.

We cooked an heirloom turkey from farm yesterday. The first turkey I've had since high school. Just washed it, rubbed it with some good olive oil, some sea salt and organic pepper and stuffed some fresh rosemary, sage and diced onions inside. This toddler sized bird went on top of more onions and fresh spices and a cup or two of water -- into the oven for a few hours. I had no idea how amazing turkey is -- as a matter of fact I may have some for a snack now.

The blessing of a food allergy -- even before this allergy progressed to the instant karma of anayphylaxis, I would get sick during the holiday feasts, without a clue as to why. This year there will be no crazy indulgence, this year there will be no pumpkin pie or cranberry relish but there will also be no wobbling florescent jello ring with suspended bits of chemically altered and preserved fruit making me ill. There will be no corn-syrup marshmallow topped sweet potatoes and no joint pain. No butterball turkey (injected with corn filled saline) and no crashing headache.

This year there will be a feast. Made by me. There will be squash, turkey, field greens, spinach, sweet potatoes and carrots all from a local farm.

This year I will be healthy and thankful and full.

Friday, July 24, 2009

Fashion Crisis

I took me three tries to get dressed for work today. Not because I'm particularly fashionable, if is clean and matches I'm good, but rather because each outfit kept failing the one important criteria that only occurred to me after I had gotten fully dressed for the first time.

How will this work if I wind up in the ER?

Outfit 1. The skirt has to go, too cold in the hospital. Once the IV goes in I'm begging for warm blankets from the Bearhugger.

Outfit 2. Rejected again. The pullover sweater is comfy for the dentist visit, the reason for my considering the ER as a possible destination today, but I don't want to get my head stuck in it when I am trying my best to breathe. Pullover is out.

Outfit 3. Pants. Button-up blouse. Button up sweater. Warm, soft, easy access for those heart monitor stickies if needed. Light on the jewelry, Medical Alert easily visible. Purse with Epi-Pen, other emergency meds and a list of corn-based ingredients.

Perfect.

Bring on the dentist and all those chemicals. They were great the first time and I hope they can continue this streak. I have a designated friend to meet me at the ER if everything goes wrong and a good day planed after this if everything goes right. Either way, I'm ready.

Wednesday, July 15, 2009

Open Wide

There are better ways to introduce yourself than " Hi, I have a new patient appointment for tomorrow afternoon and I have a bit of a strange question. I have a severe corn allergy which means I can be allergic to the powder used on medical gloves. I want to make sure that it is not a problem if I bring gloves that I am not allergic to for the dentist to use."

The nice man who answered the phone assured me that they have people with allergies come in all the time, so they don't use latex gloves. After three rounds of "I'm not allergic to latex I'm allergic to the powder that is used on latex or latex-free gloves," I got the okay to show up with my pretty purple gloves for the dentist to use.

Step one, done. Now all I need to do is get them to rinse off everything that comes out of packaging before it goes in my mouth. I'm sure I'm going to be their crazy patient for the day -- maybe the week or the month. But I am SO not in the mood to get sick for the sake of being polite. So, the thing I need to remember going in to this is to be firm, rational and clear about what I need to be safe.

Frankly, it makes me quite nervous to put anything unknown, or out of my control in my mouth. I don't eat processed food, why would I be okay with opening my mouth for one of those dental x-ray things fresh out of the packaging? I want to know what is in/ on it, what it has been wiped or powered with, what was on the line where it was made. Too many questions that no one has ever asked the dentist, questions that they will have no idea about.

Firm, rational, clear. I can do this.

This may not be the most fun day I've ever planned, but I chipped a molar and need to get it fixed now. Tomorrow is just x-rays and consultation. No cleaning, no chemicals, not a lot that should be too out of bounds. It is a good chance to talk to them and see if they can work with me or if I need to try another office. I have no idea what I'm going to do about getting my tooth fixed. Pre-medicate and hope for the best?

Firm, rational, clear. And calm.

Breaking in a new set of people not to kill me, medical professionals at that, is not as easy as one would hope. The corn allergy is a rare enough diagnosis (particularly as reactive as I am) that they may not have encountered anyone with this little issue and can dismiss my strange requirements as those of an over reactive hypochondriac - till it is time for the Epi-Pen and the ER. If they have a sense of humor, I will be fine. Pretty purple gloves, safe soap; honestly I'm not crazy, I'm just trying to keep breathing.

Firm, rational, clear, calm. And in control.

It is too easy to become passive in a medical situation -- doctors, dentists all have worked hard for their expertise and I am there because I need their help. We've been taught to be good and cooperate to get the best care. Reverting to a child who says "Ahh" when told to open wide is not going to do me any good tomorrow or any time in the future. I need to remember that I have a uncommon problem that can be life threatening. If they can play Let's try not to kill Christine today I'm happy to be there. If they can't, I don't have to stay.

Firm, rational, clear, calm, in control. With a happy smile.

Open wide? With caution, thank you.

Friday, June 26, 2009

Breaking Rules

I have the evil red bumpies today -- the smallest and most upsetting of my reaction set since it actually hurts. I did it to myself at work, sorting photocopies. While chatting with a colleague, I carelessly licked a finger to make flipping pages easier, did it again and POP! Evil red bumpies.

I hate this reaction because I feel each little bump erupt, and have a hard time not getting irritated. Like with most difficult situations, staying calm seems to make reactions less intense, more bearable. When you've just poisoned yourself and your instant karma is small points of pain, it can be a bit difficult to remember this.

Over the last few years I've broken myself of the habit of chewing on pens, putting a hairclip in my teeth while doing my hair, holding nails in my lips. The thousand thoughtless things that touch our lips in any given day are now off limits. A pen fresh out of the box is just as off limits as a pen from my desk. It's not germaphobia, it's possible corn contact. I have no idea what as used in the factory or even what was on the hands of the last person that touched this thing. Maybe it is skin safe, but do I really need to take it to the next level of testing by putting it in my mouth? Yikes.

I take for granted that my internalized rules of behavior will keep me safe. Apparently I need a refresher this week.

The crash course:
  1. If you don't know what is in/on it, don't put it in your mouth.
  2. Be prepared, carry your emergency supplies everywhere, everyday.
  3. Speak up, if you need something to be changed to keep you safe.
  4. Move it, get and stay away from airborne sources of your allergen.
  5. Stay calm, try to relax and give yourself a break when reactions happen.


We all make mistakes. Lately it feels like I do more so than most. I have 2 new foods lined up to trial this weekend, but this makes my third minor reaction in a week, so no go. I need at least 5 clear days before risking anything new. Ke garne? Something to look forward to next week.

Be safe. I am your horrible warning.

Wednesday, June 24, 2009

Besties

I'm ridiculously over attached to my best friend. My dependable, there for me, ready in pinch, always got my back, never out of reach best friend.

I think I used to be more normal (though my Lakota brother may disagree with that one). Not so long ago my best friend was human. I haven't gone completely around the materialist bend, at least it's not diamonds that are this girl’s best friend.

I never, ever leave home without my best friend. Not for a walk, not for a quick trip to the store, not to go to a meeting, not for anything. Ever. Er..except today.

Today is not a good day to die, but I carelessly, friendlessly, sauntered in that direction.

First mistake, leaving home without my best friend, the Activeaide bag (2 Epi-pens, Benadryl, Gloves, Zantac).

Second mistake, deciding being on time was more important than being safe. Fortunately I had backup Zantac and Benadryl in my work bag --put some in my back pocket and headed out to a work luncheon (where I was not eating, of course).

Third mistake, not making a graceful exit when I saw the corn on the cob being served. I thought, “Outdoor venue, no problem I’ll just stay far away.”

Fourth Mistake...that's enough. Suffice it to say I earned another stripe on the horrible warning badge today, took Benadryl with no backup and hoped for the best. I’ve only had fumes from cooking corn require an Epi-pen once, today was not to be the second time time. After it was over, I zoomed home to grab the purse with my Activeaide bag.

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I generally have to laugh at the foolish mistakes I make, since in the grand scheme of things my problems are rather minor and manageable. But, even with a large dose of perspective, there are still moments where I scare myself.

Driving back to the office after picking up everything I needed to keep breathing in case of an anaphylactic reaction, I attempted to drown out the internal chorus of "Fool!" by cranking the CD to window rattling volume. Instead of helping, hearing Tod A. growl out "This is no joke, this is my life," loosed the last reserves holding back the fear. Springing out, all the worse for having been compressed, the consequences I had managed not to think about found physical expression in shaking hands and blurred eyes. Trying to cope at 60 miles an hour, I sang along with Tod through chattering teeth till the adrenaline wore off.

I'm still learning to manage this allergy on my own. Odds are, I'm going to screw up. Such is life. I'm lucky to be able to live and learn. After I post this I'm putting my backup Epi-pens in my work bag along with the extra stage one meds. Lesson learned, better preparedness in the future.

Then I'm cranking up the rest of the my new music* and dancing around the house till I can't remember what fear feels like.

*(Thanks for the all the music Jed, it’s 100% corn free and fantastic!)