Breathing Deeply: My Life With Cystic Fibrosis

And I hope that you are having the time of your life
But think twice, that's my only advice
Come on now…who do you think you are…
bless your soul
You really think you're in control

--Gnarls Barkley (Crazy)

Today I’m both frustrated and relieved at the same time. I’m frustrated because I’m still so exhausted, which means that something must be amiss in my body. I’m frustrated because I know that this is probably going to take another round of intravenous antibiotics, even though it hasn’t been very long since I was out of the hospital.

I’m relieved because I know that for the most part, this is just “part of the deal” of having CF. It’s very unlikely that I’ve picked up something new; this is probably just a rough year for me. I’m relieved that since I placed a call to the doctor’s office yesterday we are already working on a solution for this particular episode—this pulmonary “exasperation” if you will—which includes oral antibiotics at least in the interim.

Still, I’m frustrated. I’m frustrated that I can’t just go ahead and live an uninterrupted life. I don’t like it that I talk on the phone with my doctor and his team more often than I hang out with friends.

Maybe the most frustrating part is that this disease leaves me feeling so out of control. I’m at the mercy of my body’s botched biology. No matter how well I take care of myself or how diligent I am with my meds, my screwy system refuses to meet me halfway and behave itself. I know that there is only so much I can do to keep the CF monster from devouring me.

The rest is up to God, and I’m relieved that it is so. If that were not the case, I’m certain my frustration would overtake me.

// posted by Lauren @ Tuesday, November 21, 2006 2 comments

Trouble springs from idleness, and grievous toil from needless ease.

–Benjamin Franklin

I prefer to keep myself busy. Unfortunately, sometimes I’m busy just for the sake of busyness, and don’t really accomplish much. Sometimes when I lie down at night, my brain continues to spin wildly, filled with ideas for new projects—things to do, things to write, things to finish. I used to think this was just part of my personality. Even when my thoughts kept me awake all night, I believed I was just too wound up or over-caffeinated and that eventually my brain would calm down.

About 18 months ago I learned that this is a psychological issue called obsessive-compulsive disorder (OCD). When most people hear of OCD, they think of people who are germaphobes and frequent hand-washers. Although those are symptoms for some people with OCD, they are not mine. For me, it OCD is largely an anxiety issue. My symptoms (like the racing thoughts) are more prevalent when I am under a great deal of stress or am over-tired.

For me, OCD is a double-edged sword. On the one hand, it actually serves as a positive thing because my obsession with routine and checklists etc. keeps me quite compliant with my cystic fibrosis medications. However, when I am not feeling well and my need for sleep increases, I start to worry that I’m sleeping too much and not getting enough things done. This in turn stresses me out and my OCD symptoms are brought to the forefront where they start interfering with my routine. Being out of routine stresses me out further and round and round I go to the point of exhaustion.

I’m learning a lot about myself and how to control the obsessions and compulsions. I am on a medication called clomipramine (aka anafranil) which really helps a lot. Still, even with medication I know that achieving balance is up to me. The choices I make about how I spend my time don’t only affect me, they affect my husband as well. In order to be a good wife and be as mentally balanced and stable as possible, I need to stay on track with the meds, keep up with my cystic fibrosis treatments, and most of all, get enough rest.

Getting enough rest is the difficult part. As I said before, there are so many things I want to do. I enjoy working as a scientist. I like the sense of accomplishment that comes from working a full week. I also like the feeling I get to see my creative efforts as a freelance writer pay off. For all the irons I own, there isn’t quite enough fire. Cystic fibrosis and obsessive-compulsive disorder limit me in very frustrating ways. There are days when that gets me down, but most of the time, when I sit back and see how much I really have done and can do, I feel good about myself.

I don’t need to be ridiculously busy in order to be productive. I also don’t need to be constantly productive in order to have a sense of worth. I’m entitled to a rest every now and then. In fact, I should probably be resting more often if I really want to feel settled and at peace. That’s my goal for the remainder of 2006—to get some much needed rest. (If you know me personally, you k now what an incredible challenge that is going to be!)

// posted by Lauren @ Friday, November 17, 2006 1 comments

• some people with CF have ravenous appetites but never seem to gain weight
• CFers who are pancreatic insufficient have to take dozens of pills just to absorb their food properly
• CF is progressive--it gets worse as time goes by
• CFers are often lonely because we are not permitted to be around each other thanks to cross-infection issues
  
• People with CF have to cough regularly just to breathe (and this is when we're feeling well!)
• Hospitalizations are called "tune ups", and may involve weeks of intravenous antibiotics
• Some of us have truly awful smelling gas--it's embarrassing but we can't help it
• We need more than 4000 calories a day
• We hate it when people comment on how skinny we are
• CF's presentation is widely variable from person to person, making the disease difficult even for our doctors to understand
• Even with a dozens medications being taken on a daily basis, we still get sick
  

// posted by Lauren @ Tuesday, November 14, 2006 4 comments