Sunday, July 6, 2008

Count me in, I guess


I subscribe to the Chronic Babe email newsletter and think of managing my allergy as managing a chronic illness, but I really never thought of having a life threating food allergy as a disability till now. We have a weekend retreat coming up for work and I found out that we will be bunking 6 to a room and sharing dorm type bathrooms. Yes, this is the same work that decided to serve tacos (corn, corn and more corn) making the lunch room impossible for me to be in the common dining area during the most recent training. Now we have a two day retreat out in the mountains of Colorado coming up and I am not sure how to begin dealing with this. Here is the (edited) info that has been sent out to everyone to address my issue:

"About food allergies, most folks will be ok with the choices in the dining hall, but not all folks if they are highly allergic...I did talk with one of your staff members about bringing food ...there is a small fridge in the hall where we are staying. If anyone else needs this accommodation, please let me know."

The accommodation that is being made for me is that I can bring my own food, which I assumed I would do anyhow just to be safe. I'm trying to be positive about this. When I am feeling cynical, the email reads if you have moderate food allergies ( the kind that are not covered by the Americans with Disabilities Act), we have plenty of options for you. If you have a life threatening food allergy, we have a safe space for you to keep your food, but your allergen will be airborne. I don't really know where to begin with this, because this is not being done maliciously, I think it is just no understanding of the dangers of serious food allergies and I 've never worked anywhere that people didn't understand serious allergies before, so this is a new challenge.

When I am not feeling scared and cynical, I try to see this is as a good opportunity for me to figure out how to explain the dangers of a serious food allergy and educate a group of people so that they are sensitive to this issue for staff in the future. That is only when I am calm and able to ignore the hysterical voice inside of me head screaming "This is too dangerous, you are going to be a horrible warning, not a good example." That voice can get really loud!

Here is what I need to be safe:
  1. No popcorn or other pure corn ( like corn chips in corn oil) being cooked while I am around -- popcorn is the worst for broadcasting proteins over a long distance, no pure corn foods eaten around me. (popcorn, corn chips...)
  2. No corn containing products sprayed around me (perfumes, bug spray / hair spray)
  3. A room and a bathroom that I can share with someone who is either not going to use perfume/ hairspray / bugspray /lotions that contain corn fragrances (there is at least one woman I work with who I know will be happy to do this with with me)
  4. Linens that have not been dried with Bounce -- this is full of corn (I will bring my own, but I am worried about the room in general)
  5. I'd like to know -- how long does it take for the EMT/ambulance to respond to this site?Do they carry and administer epi? Do they have IV Benadryl? There are special problems with medical help for the corn allergic -- if I can't talk will they read my medi alert bracelet about no dextrose/glucose (corn) IV and unpowdered gloved only? (What I really want to know is can they do an in the field trach -- that is how worried I am) Inactive ingredients for a lot of medications contain corn, so even in the hospital, we need to stop the docs and nurses and ask them to check the med before they give them. Sometimes they don't believe this is an issue -- then there are more problems.
I don't know if work will want/be able to make these accommodations. Not that I work with an evil bunch of people, they are generally pretty great, but I worry that my needs may see a bit far out to them. I'm worried to the point of thinking worst case scenarios -- my options may be to sleep in the common area, not shower, sleep in the car, eat outside by myself, basically take enough Benadryl that I sleep through the whole thing anyway and generally leave what is supposed to be a team building weekend feeling isolated and de-motivated. That was the unintended consequence of the last one, I hope it is not the same for this one. Of course the very worst cases are joining the statistics of the food allergic, one of the 30,000+ ER visits in the U.S., one of the 100-300 deaths in the US. (statistics vary). I really don't want to be a horrible warning for poor allergy management.

Let me make it clear that I am not asking for accommodation so that I can have fun, I am asking for accommodation so that I can be sure that I keep breathing. On a day-to-day basis I control my environment to minimize risks, this event sounds like more risks than I would normally take for anything. (I don't go to amusement parks, street fairs, ball games, movie theaters, or other places where I can't control what I will be exposed to because of this allergy.) At times I want to ask if I can be excused for safety reasons, but then I feel like I am not a team player. If I didn't have any health concerns, this is a place I would love to visit and to get to stay for free is a real treat. Now what do I do?

[Edit: I was in a committee meeting with one of the planners of the weekend, afterwards we met for a few min. in her office and I had a strange feeling that she read this blog (hi!), since she immediately offered me my own room, asked about reactions to cleaning supplies, and asked what can't be eaten around me. WOW. Either that or she read my mind. This is so different from the last training!

After a great discussion (including emergency response since this is about 1.5 hrs away from the nearest large town) she ultimately left it up to me to decide if it would be safe for me to go and gave me the number of the conference planner on staff there, so I can get in touch with the staff nurse. I still want to know what emergency supplies they have to support a major reaction --worst case scenario if I need real medical support, I would like to know that there is IV benadryl, steriods, and saline available (not glucose or dextrose since those are corn based and deadly) and someone who will help advocate for me in this situation. Without my sweetheart, A., who has been around for all but 1 of my major reactions, I'm very nervous about handling a reaction without someone else who knows what they are doing around a corn allergy. *oh corn is sooooo special*]

So, I still don't know what I am going to do, but I feel like I have the support of upper management without my having to do this big song and dance about what I need to stay safe. I feel so relieved about this, but I think I still need to come up with a concise way to communicate to adults the dangers of a severe food allergy, what I am allergic to and what I need to be safe. Advice?


2 comments:

Jennifer B said...

This post in particular was very interesting. We only deal with peanut allergy at home, and avoiding tree nuts and peanuts. I do not know very much about corn allergy. I know corn is in many foods, but did not know it is in "bounce". Do you ever visit http://allergicgirl.blogspot.com/? If anyone would have useful suggestions or advice, I bet she would.

-c said...

Thanks! I checked out her site, it is really helpful