Wednesday, January 20, 2010

bring it to me, bring your sweet lovin,' bring it on home to me

I was de-picced yesterday morning. This was the easiet (of the three) round of IVs I have had yet, and I was actually a little hesitant to have it pulled. But yet, that little undying denial bird just wouldn't let me request four more days. I do feel better, that isn't the issue. But the thought of getting sick again soon, of needing IVs in the near future (which would mean thinking about a port because I am NOT into the PICC-line deal) I mean, that was almost - almost - enough for me to say, hey! let's do another four days just for the fun of it! anyway, PICC is gone, shower taken, feeling better.

In fact, I am feeling enough better that I treadmilled Monday and today and actually ran at a decent clip (as much as I could, which isn't much at all) and there was no coughing (and thus no pants-peeing). so sweet. My energy level was almost back to normal.

Here was today:
7 - up, kids up, lunched packed
8 - vest, nebs, treadmill
10 - bagel with daughter
post office, fabric store
12 - lunch and playing and computer
1 - finished 1 out of 3 Roman blinds I am working on for the kitchen
2-5 sewed up a cute little skirt with some fabric I have had for a few months. Turned out great!
5 - cooked dinner, ate
6 - bathed kids, did homework with kids, cleaned kitchen
7 - vest nebs
8 - kids to bed
9 - me time, computer, movie? rum

so...not that anyone needed the run down, but I feel quite productive.

I was going to write about transplant, as that has been muddling through my head a lot lately, but I think that that will take this post in a direction I am no longer in the mood to entertain.

Just joined Netflix. Found a movie on there that I have had on my Amazon wish list for like 7 years. I thought it would never come to the U.S. That's right - FORIEGN FILMS. I love them. The first question my husband asks me when I ask him to watch a movie is, "Does it have subtitles?" But secretly, I think he likes them.

Tuesday, January 12, 2010

oh mom, I wonder when I'll be waking

Things have been...meh. OK.

I am on IVs, tobra and aztreonam. What I enjoy is that each infuses over only a half an hour and the tobra is every 12hrs, the other every 8, so I get to sleep and I am not hooked up for an ungodly amount of time (like November's IVs of Levoquin which infused over an hour and a half and zosyn which was at an exhasuting every 6 hours). SO that has been good, makes it not seem too bad. Though I have not bathed in four days now and I look a bit slimey.

I did talk to my family and they have been helpful. My mom cooked a bunch of dinners for me so I don't have to worry about cooking this week. and my dad, well...he's convinced if I just accept god into my life things will be better. I know he means well, I also know he has no clue what I think about God, so we'll just leave it at that.

Still, people want to call me a lot to see how I am. I want to be grateful for their caring, I want to be, but when the phone rings I am loathe to answer. Because you know, people get tired of you saying you're not feeling well. So I just end up lying and saying I feel good even if I don't. Just this morning my mom asked and I said yes, I feel better (which in this case is true) and she said "well that makes me smile." and I know as a mom what she means, you worry when your child doesn't feel well. I do understand. But still, I couldn't help but snarking, "as long as it makes you feel better." I know I can be a shit sometimes.

Emotions have still been wacky, though I think even some of that is resolving.

I do think I feel better. My FEV1 was at almost an all time low of 52, and I still feel a little SOB which I worry is permanent damage from being sick for 2 months, but a lot less is making it's way up from the depths of my lungs, so that is good.

I am teaching a technical writing class this semester and so I am working on putting together a syllabus while still waiting to hear about my proposal for my master's things are keeping me occupied, which is what I need.

Not much more to say, I guess.

Friday, January 1, 2010

Narrow Escapes

I remember quite well typing “cystic fibrosis” into the search engine. I was at work, it was the fall of 2005 and I was on my lunch, maybe even my plan period. I was teaching 6th grade bilingual at a rough school on the west side of town. I had a small class, only about twelve students, and I loved them all very much. Often I was simply called “maestra” or more often than not, “mees!” Still, teaching is an emotionally and (for me, anyway) physically draining job, and I often used my lunch period to decompress, relax. So I don’t know what led me to search for CF that day, only that I did.

My first post started out like this: I am new here and I have been posting like crazy because I never talk to people about my CF and the few people that I know with it are "sick." I have read about so many healthy people here, it's great! I was 28 and sort of oblivious to the role that CF was playing in my life. I thought I was healthy, I thought I was “different;” I didn’t even know how to read my own PFTs. I was trying to get pregnant. It had been almost a year of trying to conceive with no luck. I already had a six year old boy, one whose conception took very little effort to achieve. I’ve always felt each of my children’s births had their own life saving purposes in my life, slowing me down, making me more aware of my mortality, but I wonder if something inside wasn't nagging me to take notice. Something had changed between age 21 and 28, something was hindering this conception or perhaps there was some reason, unbeknownst to me, why it wasn’t happening easily. I have no answers to why, but I know what happened that day: the penny dropped.

I have often wondered, what would have happened if I hadn’t put myself out there that day? Where would I be in the CF game? Over the four + years since that day, I have started using a vest, nebulizers, inhalers, got updated on Ct scans and lab work, had sinus surgery and had IV antibiotics. All things that were long overdue but that I learned were prophylactic rather than defining. I’ll never know, of course, what difference that first post on the CF forums made in altering the path that I am on, but I feel deep inside that it was purposeful rather than coincidental. Knowing not only the health benefits I’ve reaped since that day but the emotional and spiritual advancements that I have encountered as well, I believe fully that had I searched for “Urban Outfitters” or “Captain Morgan” that fall afternoon, things would be incredibly different.

**If you have not read the post below this, please do. And write your own Narrow Escape story...use the topic as freely as you wish!!**