Thursday, January 21, 2010

The VEST: I may be sharing a little too much here



 A couple weeks ago a friend of ours stopped by just as I was sitting down to use my VEST. As we talked I casually began buckling up the vest and hooking up the tubes; it wasn't until the vest had inflated and began rapidly vibrating that I noticed the confused look on my friends face. "WHAT IN THE WORLD ARE YOU DOING?" he asked.

Oh yeah. Sometimes I forget that vesting isn't a normal part of everyone's day.

I have a love/hate relationship with the VEST. For instance: when I cough and cough all day and can't seem to get anything up, then I sit down and have a really exceptional session with the VEST and before you know it, I'm getting all sorts of stuff up. I can't even tell you how much I love the VEST when this happens! (Another thing people unfamiliar with CF don't understand--my fascination with the junk that I spit up. Color, consistency, amount, etc.) I posess a very real appreciation for the VEST and what it does for my health.

Even still, a part of me HATES the VEST! And that part of me happens to be my boobs. The women in my family are not small chested. Thanks, I suppose, to my maternal grandmother, my Grandma Calhoon. Although if she's where the boobs come from, I suspect she may be where all the crazy in the family comes from, too. Anyway, where was I? Oh yeah, BOOBS. It's amazing how as the VEST inflates I can actually watch my boobs squish right up to my chin. Then as the air starts pulsing through it they begin to resemble two giant jello-filled balloons. As if it wasn't uncomfortable enough already, about five months ago those already pretty big boobs turned into REALLY BIG breastfeeding boobs. Just imagine all that squishing and shaking and bouncing, then add milk...copious amounts of milk. It's just not pleasant.

Although many people I know are aware of the fact that I have CF, I think very few actually know what that means. They are vaguely aware that there may be 'something wrong' with me, and that seems to suffice them. My friend who I mentioned earlier had always been one of those people, but seeing something so foreign to him got him asking questions and we ended up having a really great talk about CF and life in general.

Then, although (or perhaps because) I know how inappropriate it is, I JUST COULDN'T HELP MYSELF and so I ended that very serious conversation by looking down and asking "So...anybody want a milkshake?"

Thursday, January 14, 2010

My Work Family

Once again I am appreciative of the fact that I work with such amazing people.

I had my medications shipped to my work address since that's where I can generally be found on a weekday, but of course they were delivered during the two hours I wasn't at work this week. So not only did my darling coworker Stephanie sign for them, but she is caring and knowledgeable enough to know they needed to be taken out of the box and stored in the fridge.

I realize that putting some boxes in the fridge isn't a huge deal. But it brings to mind other instances when I have been grateful for my work family. Like that time my car wouldn't start so my supervisor drove 15 miles out of her way to take me home because she didn't want me to get bored waiting for Adam. Oh, and that amazing baby shower they threw me last summer. Or that time I got sick and was out of work for three weeks, and I'd already used every last minute of my personal time during my maternity leave, so they all donated some of their time so I could still get a paycheck.

I constantly find myself complaining about having to work. I'd much rather be at home with my baby. I hate being exposed to all the germs and illness that are an unavoidable part of working with the public. I hate that things are always MY FAULT and the customer is ALWAYS right. I have a hard time maintaining a pleasant and professional demeanor when dealing with people that are rude or, let's face it, just downright stupid. But, somehow I still love my job. I credit that to the people I am surrounded by each day.

When my doctor orders a 24 hour urine collection that has to be refrigerated until it's sent to the lab, and I can bring that enormous container of urine to work and store it in the employee fridge and one coworker tells another that something is "in the fridge, behind Jenny's giant jug of pee" without even batting an eye, things really can't be ALL THAT bad, can they?

Thanks, guys.


So, the only picture I could find happens to be this one from
last Halloween. This is all but one of us in the branch I work in.
We were all vampires...

Wednesday, January 13, 2010

Thinking...

It's so damn easy to say that life’s so hard
Everybody’s got their share of battle scars
As for me, I’d like to thank my lucky stars that
I’m alive, and well


It’d be easy to add up all the pain
And all the dreams you sat and watched go up in flames
Dwell on the wreckage as it smolders in the rain
But not me, I’m alive


And today, you know, that’s good enough for me
Breathing in and out's a blessing can’t you see
Today's the first day of the rest of my life
And I’m alive, and well

...................................................... 

*Partial lyrics to Kenny Chesney's "I'm Alive"

Monday, January 11, 2010

Compliance

I had a clinic appointment last week that I've been a bit reluctant to post about. Partially because I'm disappointed with myself, and partially because sometimes I can't help but feel like I'm just being so damn dramatic. Before I talk about last week's appointment, let me back up a little. When I was discharged on November 25, my FEV1 was 54%. I was terrified at the thought of going home with such low lung function (for me). Before I was sent home there was a debate over whether or not I should stay a while longer and, surprisingly, I was the one arguing to stay. But, because of the Thanksgiving holiday nobody would be around for me to do pulmonary rehab for 4 days and my doctor believed that I could make more progress at home rather than cooped up in a tiny hospital room. Also, it was a well known fact that the lack of sleep coupled with the seperation from my nursing baby had turned me into an emotional and hormonal monstrosity and I think they were getting tired of the phlebotomists leaving my room in tears.

At home, I continued to do 3-4 treatments a day and took my medications religiously. When I went back for my discharge follow-up two weeks later I was at 67%. I was happy (well, happier) with this number and felt pretty optimistic that I was on my way back up. But just a few days later I started to get a runny nose. Soon it turned into a full blown head cold which, for me, always means a pretty good cough is in the works.

(Something related: I've always struggled with sinus problems. By the time I was 10 I'd been through 3 pretty major sinus surgeries. SO OFTEN a simple cold that starts in my sinuses becomes a lung infection. We know this is a problem and have recently talked about the possibility of another surgery.)

For the last month I've done my treatments, exercised and taken my vitamins like I should, but I just can't seem to get back up to par. I think a lot of it is due to the ample amount of stress in my life right now. Add to that the fact that I've always had immune system deficiencies, I work with the public on a daily basis and I have a 5 month old who so generously shares all the germs she picks up in day care. Is it any wonder I spend half my life feeling ill? When I went to clinic last week I blew a 59. Now here's where I feel like I'm being dramatic. I know that for some people 59% is awesome. But for me, someone who has spent the majority of my life between 85-95%, 59 is devastating.

The good news is that nobody feels this is a permanent downward trend or that I will have to accept a new, significantly lower baseline. The entire CF team is very optimistic that I will be able to get my scores back up. The consensus seems to be that I'm still unstable from getting so sick so fast and, after all, it is still cold and flu season. I'll be starting some new meds: azithromycin daily and Tobi on alternating months. I was also given some sinus rinses that are an absolute godsend. I've never used any antibiotic chronically, so I'm hoping this will be quite a shock to my system and that it will give my body the jump start it so badly needs right now.

(Another tangent: I used to regularly argue with my doctors about chronic medication. The first time I went to the adult center at the U of U, I was sitting at 97%. They were impressed with those numbers, but wanted me to start doing Tobi "just to mix things up"... seriously, that's what they said. I was strongly opposed to that idea. I understand now that a lot of CF treatment is prevention, but my thinking used to be why risk over utilizing any medication when I'm doing so well? If and when I need it down the road, what are the chances that the bugs will be immune from me using something when it maybe wasn't necessary? At that very first appointment I ended up telling the doctor that she could write the prescription if that would make her happy, but there was no guarantee I'd ever fill it. I think I left somewhat of a brazen first impression.)

So here I sit, anxioulsy awaiting the arrival of my meds. For the first time I'm being absolutley compliant with my doctors, and it's actually a good feeling.

Friday, January 8, 2010

Early morning encounter

Early this morning I awoke, startled by the round little face sitting just inches in front of mine.

Shylee: Psst! Hey Jenny-mom! Can I go potty?
Me: Of course you can. You don't need permission to go potty.
Shylee: Oh, thank you!

As she skipped out of the room I couldn't help but laugh at the irony. We've taught her that whether or not she chooses to sleep, she needs to stay in her bedroom until the sun is up so the rest of us can get a little shut-eye. To ensure that she wouldn't get in trouble for leaving her room while it was still dark, she PASSES RIGHT BY THE BATHROOM to come to our bedroom and WAKE ME UP to ask if she can go potty.

I think the whole purpose of that lesson has been defeated.

January 2010 Newsletter: 5 months

Dear Morgan,

These first five months of your life have been some of the most beautiful, but also some of the most difficult months of my life. Difficult because of issues with money and doctors and work; beautiful because no matter how hard things get, I can always count on you to lift my spirits and put a smile on my face. No matter how unpredictable the rest of the world is, YOU are a constant in my life. I credit you and your daddy for getting me through these past couple months with at least some of my sanity still in tact. I wish I could say that will always be the case, but I know better. See, I've lived through your sister's third year of life so I know there is a very good chance that one day you will be the one pushing me to the brink of insanity rather than rescuing me from it. But for now, I want to thank you for being my anchor. Thank you for helping me keep things in perspective and for giving me reason to stay strong.


My favorite thing you've learned this past month is how to give 'kisses'. We weren't sure that's what they were at first, but we soon realized that those slobbery attacks were, in fact, tokens of your affection. When I pick you up from the babysitter or after I've given you a few kisses on the cheeks you'll grab my face with both hands and firmly attach your wide open mouth to the first thing it comes in contact with: cheeks, nose, mouth, whatever. Although that's very cute and funny, the best part is when you pull away and there are visible strings of slobber reaching from your mouth to my face. I don't mind your slobber too much, so I'll let you "kiss" me whenever you feel like it. Your dad, on the other hand, doesn't handle the slobber too well. I believe you are fully aware of this fact and that you just enjoy messing with him. I swear sometimes you watch him and wait until he's not looking, then you suddenly fling your entire body onto his lap and start sucking on his arm, smiling the whole time.


A couple weeks ago you got your first teeth. That's right, teeth. Not tooth. Plural. As in MORE THAN ONE. And I am in breast feeding hell. I'm not sure where you got the idea that it would be funny to bite down and arch your back at the same time, but you do it regularly. Then you LAUGH. And when I sternly tell you IT'S NOT FUNNY, you just laugh harder. Although I have no concrete evidence of it, I suspect your father may be putting you up to this, you know, to get back at me for laughing at the whole slobber thing.


  Along with all the slobber, the spit-up stained EVERYTHING, and the endless loads of laundry you've brought into our home, you've also brought an incredible amount of laughter with you. You find humor in the simplest things, and hearing you laugh gets your dad and I laughing which, in turn, just makes you laugh even more. The other day as I was carrying the laundry basket through the living room, I walked right into the coffee table and you thought it was the MOST HILARIOUS thing you had ever seen. You were even laughing hard enough that you started snorting-something, I'm sorry to say, you inherited from me. A couple weeks ago I was in the car with you and Shylee and you sneezed. Shylee thought this was quite funny and began giggling uncontrollably which made you squeal in response. I sat there listening to the two of you for a good two minutes and eventually I couldn't help but laugh right along with you. And there we were: the three of us laughing hysterically about a silly little sneeze. But I'm so happy we're able to share moments like that because whether we're laughing about the frenzied look on your face when you first discovered Dixie's enormous, stretchy cheeks or about something as ridiculous as a sneeze, the feeling that laughter creates is the same. And it's just one more thing that will help hold this family together.


Love,
Mama