Community Faces: Jessi

People are always asking me whether I consider myself "sick."

The truth of the matter is that, most of the time anyway, I don't think of myself in terms of my illness. Through the years I've learned that it's far easier for me to go about my daily life if I'm not overly hung up on labels, diagnoses, medical records, or even the bronchoscopy report I saw yesterday that listed me as "class III: a patient with severe systemic disease." Thank you, grade assessment program.

When you get right down to it, though, I have a lot of medical codes after my name. Cystic fibrosis is my primary diagnosis, but it's followed by CF-related diabetes, lung transplant, complications of lung transplant and rejection, malnourishment (I can't even tell you how much I hate that one), immunosuppression, and a heart condition known as supra-ventircular tachycardia (SVT) -- among others. These are more than just numbers on a chart, of course, but when it comes to how I view myself they honestly don't make too much of a difference. Another day, another diagnosis, right?

That's part of why I love today's Community Faces post, written by a fellow CF lady who also happens to have a diagnosis of Epilepsy to add to her list of medical accomplishments. Special thanks to Jess for taking the time to write for the series and for sharing her story of life between the ailments. Happy reading, beautiful people.

Community Faces: Jessi Mollman

Name: Jessi

Age: 31

Blog: Little Tadpole, Big Pond

My name is Jess, I'm a 31 year old woman from Seattle, WA with CF and epilepsy.  My CF was diagnosed at about 6 weeks of age.  The epilepsy was diagnosed in 2010.

There is no known connection between CF and epilepsy, but epilepsy does make CF care more complicated.  There are some antibiotics, merropenum and immipenum are two, that increase the likelihood of seizures, especially in someone who has a history of them.  As a result of that risk those antibiotics have become a last resort for me.  Only if my bacteria become resistant to everything else will these meds be used for me. 

Sleep deprivation is a common trigger for seizures, and has triggered mine in the past.  This becomes a huge problem when I'm in the hospital or doing home IV antibiotics.  Its hard to sleep in the hospital because of the noise, the uncomfortable beds, nurses coming in to start meds in the middle of the night, among other things.  Even when I'm doing home IVs I have to adhear to a strict schedule and usually can't get a full 8 hours of sleep in a single stretch.  With my last round I was lucky to get 5 hours.  I know some people who adapt their medication schedule so they can get more sleep at night but I can't do this.  I have to keep the levels of meds in system as consistant as possible or I risk seizing.  I've actually had very small seizures when my antibiotic levels get too high.  I have to take every chance I get to nap or I risk having a seizure.

I was fortunate that the first anticonvulsant that my neurologist tried has been very effective for me and I don't have any side effects from it.  The only thing I don't like about it is that it interacts negatively with diflucan, an antifungal medication.  Antibiotics increase the chances of fungal infection because they kill the good bacteria in your body as well as the bad.  Diflucan is the easiest way to treat fungal infections because its just a pill.  However, since I can't take it I have to use creams or a mouth rinse when I get thrush in my mouth.  The creams and rinse don't work as fast as diflucan and the rinse tastes horrible.  Considering all that I have going on, is this really that big of a deal?  No, but anything that makes my life easier is a plus!

My epilepsy diagnosis was a total surprise, no one else in my family has it.  While it has made things a little more interesting for me I feel like I have adapted very well and continue to live my life.  Not much gets in the way of me having fun and taking care of business.