My Sickly Self

My 12/1/10 post for HemAware.org. Don't forget to check out their articles! Great stuff for all you hemos.

http://hemaware.org/blogs/diary-hemomom/my-sickly-self

I landed myself a trip to the emergency room a few days before we flew to the National Hemophilia Foundation’s (NHF’s) Annual Meeting in New Orleans, November 11–13. I had a severe allergic reaction that was bad enough for John to call 911. Oh, lucky me! I’m OK now, and the baby is OK, too, but I almost thought I wouldn’t be able to attend the conference. My allergist was leery about allowing me to fly after the scare, and my ultra-conservative ob/gyn strongly advised against the trip. But, I’m stubborn, and I went anyway. And actually, I’m glad I did—illness or not. I had a wonderful time despite feeling under the weather, and I wouldn’t have traded the benefits of those four days for the world.

I’m able to somewhat write nonchalantly about this experience because, unfortunately, I’ve become used to my condition. You see, I’ve had several brushes with death before. For the past eight years I’ve suffered from idiopathic anaphylaxis, along with severe asthma.

What happened to me the Saturday before the Annual Meeting wasn’t a first-time occurrence, my friends. I’ve been unconscious on a ventilator before, I suffered a right lung collapse in 2006, and I’ve had my fair share of ICU admits. Niki and I can both equally call the emergency room our second home. The staff knows us well! I’ve had thousands of dollars of testing, but specialists haven’t been able to figure out what causes these anaphylactic reactions. So, I carry an EpiPen, and I know how to use it!

I often try to downplay my health issues, but honestly, I constantly feel like I’m walking on eggshells. I never know when or how hard an episode will hit. It initially was difficult for me to emotionally deal with the boys watching me be sick. They’ve seen me unconscious and foaming at the mouth. I’ve even seen the panic in their eyes on the rare occasions that I stayed conscious long enough for the paramedics to arrive. It all leaves an uneasiness in me that I can’t even begin to describe. I can only hope the boys won’t be affected by the things they’ve seen me go through.

Hanging On to Our Good Insurance

When Niki was born, the reality of our family’s need for good insurance really kicked in. And that only added to my worries! If I lose my insurance benefits because I’ve fallen ill, or—God forbid—if I die from one of these episodes, then it will affect John and the kids not only emotionally, but also financially. I know this all sounds melodramatic, but this is a reality for our family. I’m the main insurance provider, and I’m not exactly the healthiest person in the world. John has excellent insurance for healthy people, but not for people who have chronic conditions. Whenever I have episodes like this, my fears come back again, and “what-ifs” occupy my thoughts. Having a sense of humor helps me be less cynical about living with my condition. I learned how to pack an “emotional survival kit” for my health issues years ago. Nevertheless, I’m a mom: It’s in my nature to worry!

I wish I could say our family has a back-up plan for the “what-ifs,” but we don’t. All I can do is have faith that things will work out—that I will stay healthy so my family always has access to the best insurance possible. I adhere to my medication schedule, but I’m also notorious with my family and friends for pushing myself too hard. The last time John had to call 911 for one of my reactions was when I served as team captain for our local chapter’s inaugural Hemophilia Walk on World Hemophilia Day 2010. I was running around all over the place that day, and it bit me in the you-know-what.

I was lucky that I didn’t get admitted or intubated that time around, but I was inches from it. That was the first time Niki saw me have one of my reactions, and she seemed perplexed at all the commotion that surrounded me. She was awake for this last one, and I didn’t like it. She had that same confused look on her face.

Fighting Frailty

Now, I don’t know if this is necessarily a good thing, but I like the challenge. I hate being sick in bed because I feel totally unproductive. I try to avoid treating myself like I’m emotionally frail from all of this, because I fear actually becoming frail. I’m a mommy, caregiver, full-time employee and wanna-be “superwoman.”

I don’t call in sick when I am sick, because I have to be ever-conscious about the Family and Medical Leave Act hours Niki and I must share. Truth be told, I don’t take it easy as often as I should. But, if I lay around and wallowed in my sorrows, what example would I be setting for my children? Rather, I believe that if I emit a false sense of strength, then eventually, I become what I envision myself to be.

There isn’t anything I can do to help my condition, but I have total control of how I perceive it. I know my physical limits, but I also try to slowly stretch my limits so I build some endurance. Mind over matter, right? (Well…most of the time, anyway.)

I suppose I want to raise Niki, and the rest of my children, to have the same philosophy as well. Think strong and you will be strong! After all, emotional strength is all you’ve got left when the world around you comes crashing down.