Tuesday, November 21, 2006
Frustration and Relief
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.
Monday, November 20, 2006
Let the Pachyderms Fend for Themselves
I can stand the sight of worms
And look at microscopic germs
But technicolor pachyderms is really too much for me
I am not the type to faint
When things are odd or things are quaint
But seeing things you know that ain't
can certainly give you an awful fright
(The Pink Elephants song from Disney's "Dumbo")
GoodSearch is my search engine of choice these days. They have partnered with the Cystic Fibrosis Foundation and will donate 1 cent for every link that's clicked using their search. That may not sound like a whole lot of money, but it adds up. So far the Cystic Fibrosis Foundation has received just over $1,600. That's a lot of pennies!
My competitive nature is in full force at the moment which is why this is a blog topic. Even though the CFF has received so much in a short time, we're lagging behind The Elephant Sanctuary by a few hundred bucks. That's almost 30,000 clicks! I feel more than a little slighted that sick, endangered elephants are benefiting from people's online searching at a greater rate than the Cystic Fibrosis Foundation.
If you haven't already done so, please visit Goodsearch.com and enter "Cystic Fibrosis Foundation" in the "who do you goodsearch" for box. You only have to do that step once. From then on, any time you use GoodSearch (which should be EVERY time you search the internet from here on out!) it will automatically assign your click-throughs to the CFF.
Oh, and just for spite, I like to search for information about The Elephant Sanctuary while Goodsearching on behalf of the Cystic Fibrosis Foundation. I derive a sick sort of satisfaction out of it.
Friday, November 17, 2006
Too Many Irons, Not Enough Fire
Trouble springs from idleness, and grievous toil from needless ease.
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!)
Tuesday, November 14, 2006
Interesting Yes, Fun? No
In addition to keeping track of the number of unique visitors to this blog, my Statcounter also stores information about how my visitors find this site, which pages they read and which ones they don't. Statcounter's built-in capabilities also enable me to perform a keyword analysis, which I use in determining what sort of information about CF people are searching for when they type a few select words or phrases into their preferred search engine.
The most popular keyword phrase lately is the following " fun facts about cystic fibrosis." I'm guessing that somewhere in the world there is a classroom of students who have been given the task of writing a report about a disease they've never even heard of. To them, uncovering information about cystic fibrosis is like a treasure hunt--they hope to find a nugget of something clever that they can use to make an incurable disease seem like just another entry in the encyclopedia.
If you are searching for "fun facts" about cystic fibrosis, I'm sorry to disappoint you, but there really isn't anything "fun" about this disease. It's plenty interesting though, that's for sure. Here are a few highlights of the more interesting aspects of it:
- 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
Wednesday, November 08, 2006
Hotternell and Dry as Toast
This isn't saying that I have adopted a defeatist attitude about the health of our planet. I think we are all responsible to be good stewards of what we have. On the whole, I support conservation measures. I drive a Prius, I recycle things like cardboard, cans and plastic--but I'm not a bleeding heart about such things. I'm not picketing to save the rainforests or hugging trees or anything like that. My car isn't covered in bumper stickers that display environmentalist hype. I'd much rather put my energy into things that have lasting merit--like my relationship with my husband for example. Husbandis wonderfulness--now that's what I call an endangered species.
Well, the heat has apparently affected my brain cells, so before I end up writing anything truly weird, I'm going to conclude this post.
By the way...would all of you who were so kind as to pray for no rain during my week out please stop now? I appreciate your zeal, but enough already!
Current Mood: spirited
Current Snack: BBQ chicken sangwich
Health-o-meter: 96% of baseline
Emotional weather: clear skies, cool in the evenings
Wednesday, November 01, 2006
My Morning Cough-y
Santa Ana season has arrived. Yuck. I wish I could just hibernate until all the dusty, dry air goes away. The most frustrating thing about this time of year is that it really impacts my sleep. During the night, one side of my sinuses will decide to plug up while the drains itself at an inexplicable pace. Then the two sides switch their roles, seemingly in an attempt to "one up" each other. Back and forth it goes until I either (a) get so frustrated that I take a benadryl to dry it up, or (b) just wakeup and start my day.
Yesterday I missed work. I had what we refer to as a "snoof" (stuffy nose and post nasal drip) starting on Monday afternoon. By yesterday morning I was a complete mess. I took some meds to control the symptoms, then crawled back in bed so that I wouldn't be wasting any of the energy I was already spending on coughing.
Cough cough cough. Sneeze, sneeze, sneeze...wait for it....another sneeze.
It's the multiple sneezes in rapid fire that convince me that this is asthma and allergies more than anything else. Still, I'm going to keep an eye on things to make sure it doesn't turn into a nasty lung infection.
I hate coughing in the mornings. Sometimes I'm so worn out from it that I want to just crawl back into bed and do nothing for the rest of the day. I have to remind my self that if I can just push through the morning part, chances are I'll be fine by the time I arrive at work. Soon my work schedule will change so that I'll be in the office later in the mornings. I'm not too keen on having to cut back my hours, but I know that it's the right move for where I am in life.