Monday, January 28, 2013

Eyeballs and Allergies

The last few posts have been political-ish so this one is just personal. I am great: happy and healthy. I just have two health issues: allergies and eyeballs.

My wonderful son sent me a book called Don't Kill the Birthday Girl by Sandra Beasley. Oddly, since I've been a librarian for many years, I had never read about other people's life-altering food allergies. It was eye-opening. The author, Sandra, is allergic to dairy, egg, soy, beef, shrimp, pine nuts, cucumbers, cantaloupe, honeydew, mango, macadamias, pistachios, cashews, swordfish, and mustard. Not as many things as I am allergic to but hers are much more severe. Even a kiss on the cheek from someone who has recently eaten a piece of birthday cake can make her seriously ill (thus the title).
She has had food allergies all her life, starting with milk and soy-based formula. Mine didn't manifest until I was an adult so I was spared the difficulty of trying to avoid allergens in a public school.

Sandra's book made me appreciate the face that I am not allergic to milk, nuts and eggs. I also learned that a lot of minor ailments I have been experiencing, especially gastrointestinal discomforts,  are actually allergic responses. Sandra also shocked me by admitting that, although she has had several life-threatening anaphylatic reactions, she has never used the epi-pen she has carried for years. That led me to a serious discussion with my allergist. When should I use it? I always thought it was for times when my throat was so closed that I couldn't get a breath. We negotiated that my blood pressure dropping below 100 was also a good time.

Encouraged by how much I enjoyed Sandra's book, I checked out Allergic Girl by Sloane Miller from the library. Sloane's allergies also dated from childhood and she shares many personal stories but, while Don't Kill is primarily a memoir, Allergic Girl aims to help you live well despite allergies. Sloane, a psychotherapeutic social worker, is the author of a blog called Don't Pass the Nuts ( She shares strategies for dealing with restaurants, family and dating and talks about having "safe" people in your life who have your back and are even willing to taste test your food for potential allergens. She learned their importance from dating someone who deliberately tested her allergy claims by eating a reactive food before kissing her, leading to a trip to the hospital and never seeing him again.

This made me really appreciate my husband and son.They never think (as far as I know) that I am faking or being overly dramatic about my allergies. They are always willing to taste my dish or question a server about ingredients. Chris was with me every step of the way to my allergy diagnosis so he knows what a difference a bite of pork makes for me. Michael has grown up knowing that I can't eat certain things so he takes it for granted. He always encourages me to try new things so I won't miss what I can't have.

Not everybody understands. I am still appalled by my dad's reaction many years ago. I told him before my visit that I was allergic to pork but the dinner he so lovingly planned for us featured ham loaf, bacon-laden baked beans, and green beans cooked with ham hocks. He said I could just pick it out if I didn't want to eat the pork. That was a compromise for him since he normally would expect us to eat all of whatever he served.

People often suspect I am just being difficult. Some people -- you know who you are -- claim to be allergic to foods they simply don't like. This whole gluten-free diet fad has advantages. There are so many more wheat-free products. But when restaurant customers demand a gluten-free pasta that they think will fix their "wheat belly" but still eat the bread, they do the truly allergic and celiacs a great disservice.

Last weekend, we were heading to San Jose and Chris wanted to try Amber India, an Indian restaurant in Santana Row. Indian food almost never contains pork or beef and they use a lot of non-wheat grains so I was game. But when it turned out to be a buffet, I was a nervous wreck. Buffets are dangerous because of cross-contamination: a spoon from the veggies gets used in the meat and then returned. Servers are often my first line of defense. I can ask them about the ingredients of a dish before I order. But the servers at buffets are there to take away used plates and don't always know what's in the food. I was careful and asked the kitchen staff who were replenishing the chafing dishes. It was lovely and I tried several new dishes with no ill effects.

After a tour of the Winchester Mystery House and a movie, we headed to Veggie Grill nearby. Their menu brags about the many gluten free-options, including mac & cheese and crispy fried chicken. Further questions revealed that the mac & cheese contained soy and that the gluten-free option for fried chicken meant substituting tempeh for breaded chicken. Nice try, no cigar.

We decided to take advantage of the large Vietnamese population and have pho. About halfway through my chicken pho, Chris wondered aloud whether the broth in this particular hole-in-the-wall joint might be a proprietary blend of whatever was left at the end of the day: a delicious but toxic combination of beef, pork, seafood and chicken. I realized that pho often upset my stomach but it never occurred to me that I was having an allergic reaction. Sure enough, my throat started constricting on the way home and I got the horrible, knifing stomach pain I am learning to associate with allergies. Live and learn and carry Benedryl everywhere. AND learn how to make pho at home!

A month ago I started getting flashes in the peripheral vision of my right eye. I searched online medical sites and kept running into similar descriptions as symptoms of a detached retina. Even though I had a doctor's appointment scheduled for the next day, I made an emergency visit with another doctor in the office. I made Chris go with me since I anticipated surgery to fix my detached retina.
This is what I see through my left eye.

After waiting for several hours, Dr. Vern said it wasn't a detached retina but, since he could see fluid in the retina, it looked like the histoplasmosis had reactivated. I opted to come back the next day for my regular team to shoot me in the eye with Avastin.

Four weeks later, another shot and a chest x-ray to make sure the histoplasmosis hadn't reactivated in the lungs. Googling the symptoms, I learned that the rash on the front of my shins that I blamed on hotel laundry detergent is a symptom of active histoplasmosis. Fortunately the chest X-ray came back clean so I don't have to have intravenous injections of strong antifungal medicines for the next two years.

Fun Facts about histoplasmosis, from Wikipedia:
  • Johnny Cash included a reference to the disease, even correctly noting its source in bird droppings, in the song "Beans for Breakfast".
  • Bob Dylan was hospitalized due to histoplasmosis in 1997, causing the cancellation of concerts in the United Kingdom and Switzerland.
  • In episode 21 of season 3 of the television series House M.D., a patient was diagnosed with histoplasmosis.

1 comment:

  1. I always think of you when I go to a restaurant that is sensitive to soy, wheat, and other allergies. It must be so difficult to have to be conscious of every...single...thing!

    I'm glad Chris and Michael are so supportive :-) Good guys.