Guest Blog by CysticLady: CF and Relationships Part II

Let me thank you for the nice comments on my first guest blog on Cystic Gal.  I am also grateful to be able to have a forum to share these experiences.

As such, I thought I'd write a follow-up.  There is another side to this story.  I will attempt to tell my version of it without using too many cliche's, but it may be hard because love is the most written and talked about topic in the history of the world.

Love is a wonderful part of life.  I think I can go so far as to say, it is the reason for life.  It is indeed a real shame to go through such lengths as a lung transplant to continue living, to then deny yourself the chance for love.  The same way that I weighed the risks vs. rewards of a lung transplant, is the way that I have to weigh the risks vs. rewards of love.

I have said before that I'd do everything again, the whole year of dying, the surgery, the recovery, for just one of those days after transplant that I didn't have to think about breathing.  Not even a special day, just a day when I get up, go about the day, perhaps dart to my car in a rain storm.  Then to sit at the end of the day and realize that not once I was fearful of being out of breath, of having to stop and check my sats, or bend over in a coughing fit.  I chose to have a lung transplant with the full knowledge that it would not be a cure that lasts forever.  I chose it knowing that everyday would not be perfect, that in fact, some days would be awful.  I've had those awful days, months, even.  Still, I am happy.

What I didn't share in my post last night was that I have a new boyfriend, a brand new shiny one.  With a lot of apprehension, I forwarded last night's post to him.  He called in the early morning, and, he's in.  I was speechless.  I was scared.  A few minutes later, I was relieved.  I believe him.  He is wonderful.

It may not last forever, and everyday will not be perfect, but I'm going for it.

In other news, CysticGal is doing better today.  She is a bit stoned due to a huge increase in her Marinol.  She has her first ABG ever tomorrow morning, so wish her luck.

 Teeda (CysticLady)

Metaphor Du Jour, a note to a colleague explaining my health

p.s. I found this image just googling "metaphor car lungs images"-weird huh?

Note to Readers: I'm a post ahead of myself so this is the Wednesday night post.
It went up, unedited, last night on accident :)

Tonight, I wrote this to my longtime colleague regarding our current project and her worries that my work is getting too intense, as hers is getting less intense while she deals with family health issues that are pressing. I share it with you because:

a) it contains the metaphor du jour

b) it is a good sample, i think, of how to articulate quickly why I want to work as much as I can work right now

c) it's a good reminder that within whatever a CFer deals with, s/he must also remember that personal challenges surround us. We can do for others what we need done for us.

d) It shows that in a short time, one can become comfortable with something that once seemed insurmountable, as I have become comfortable wearing oxygen in front of my students when I need to.

Here goes . . .

"L--,thanks for this message and we'll talk (hopefully) more tomorrow. On my health issues- the only thing I'm really having trouble with is sustained cardio like walks, when I have to wear my oxygen, and mornings are sort of rough because of the oxygen issues. Other than that, I am really in good health and spirits and being active is the best thing for me (and my spiritual health/mind) right now. So I love that I'm able to help you with this project, seriously. Also, now that I have my Handicapped parking, my entire day has gotten a lot easier.

[I wish I had applied for it when my sister told me to, a year ago!]

I think of my lungs like an old car. They can go on lots of short drives but when they go on a road trip, they are in trouble until they make it to the shop. The oxygen is the shop :)

I am fine with regular activities and even being very active in class and rehearsal, but long bouts of formal exercise are what wear me out, and I need to use the oxygen to keep from feeling very fatigued. With our teens, in particular, I would not hesitate to wear it in rehearsal if I need it. They really don't care. Some of the kids we will have, have already seen it at other rehearsals around town. I'll wear it if I need it, and when I wear it, I can do whatever I want. It's really a great freedom for me.

I'm more used to this now because it has been this way since the winter, and even worse since about May. I don't really know what my year ahead holds, but I could be in this sort of state for a few years even, so I want to make sure that I'm being as active as I can not only because it's the best for me, but it is also the best for my lungs. :)

Let's talk more and just know that the [artistic institution I work for] family will rise up to meet you if an emergency arises or if you are behind in the planning. We are a teaching artist ensemble! We should practice what we preach. :) I am honored to do whatever I can, that you need. Seriously."

Feel free to use these words (or your edited ones) in an email to your colleagues when they say,

"I feel like you're doing too much."

and you read or hear

"Stop doing what you love."

Because I know, that can be a hard conversation to enter.

Goodnight!
CG

The Vow of the Cardio-ORIGINAL

The Vow of the Cardio.

NOTE: This version of the Vow will remain published, but revisions will be posted here, as I move forward with my progress and thoughts on exercise!

You, too, may take this vow. Or you may make your own. It is a promise between you and your lungs.

1. I vow to provide my Lungs with daily exercise so that they can serve me to the best of their ability.

2. I vow to exercise my Lungs for a non-negotiable minimum of 30 sustained minutes every day including during religious holidays, family events, unforeseen circumstances, and regardless of the time of day, the status of my Tummy, and even when I am very sick unless my doctor actually tells me directly that I may not exercise.

3. I promise my Lungs that their oxygen needs will be met. To ensure that my Lungs will believe me, I will call my home health company ahead of time to prepare for travel, holidays, and changes to my routine. I will program the home health 02 company's name into my cell and set reminders to call them for supplies.

4. I will not fool my Lungs that other forms of non-sustained exercise can take the place of my Cardio/aerobic time. I will use other forms of exercise to compliment my aerobic activity, not replace it.

5. I will monitor my Lungs' ability to use O2, and the status of their dearest friend, the Heart, by checking my O2 SAT and pulse. I will work to my full potential during my workouts by steadily increasing the difficulty as I track my improvements. I will expect my Lungs to work to their full potential, but I will not get mad at them if they have a bad day, week, month, or year.

6. I will set goals for me and my Lungs, and when we complete them, I will reward us handsomely. The goals I set will not be based on how "hard" I work out, but how often, as I cannot truly control how fast I can go or how long I can go on a given day.

7. I promise to keep exercising my Lungs during a health setback- especially during a health setback. My Lungs are sad then and need the pick-me-up endorphins.

8. I will use The Vow of the Cardio to defeat The Demonic Yukkies and their ever-increasing liege, and drive them out of my Lungs forever.

9. I promise to review my Vow regularly, both alone with my Lungs, and with my physician, to make changes as needed.

10. I promise my Lungs that I will be honest with my Readers about my adherence to The Vow.

Make you own ten-point "Vow of the Cardio" today! Don't make YOUR Lungs say, "What have you done for ME lately?"

In an upcoming post, "The Lung Agreements," or what your lungs promise to do for you.

-CG

Growing Older With CF

NEWSFLASH!

Read this article! Boomer, CysticLife, Ronnie and all the Twitterers are tweeting about it. AND, it's about ME. Well, a generic version of "about 30 year old CF Patient" ME. If we can't find ourselves in our demographic, where CAN we find ourselves?!!

It's a really great article!!

Growing Older with CF

By Mike Bederka

Top Ten Excuses Not To Exercise with CF (and why they are crap)

DISCLAIMERS: 1) I am not a doctor. At all. I have two degrees in the arts. Half the time I don't even believe in Western Medicine.

2) I am teaching young children this week. As a result, I do not use any bad language or even frown much all day. This leads me to swear a lot at night. I don't know why, but it's true. The below post has some cursin' in it.

Top Ten Excuses Not To Exercise with CF

1. I can't exercise on an empty stomach, and I haven't eaten something in at least . . . ten minutes.

2. I just ate so many calories, I can't exercise NOW! My tummy may start to hurt at any moment. I must lay down and wait for it to start.

3. I better not burn too many calories. I'm trying to gain weight. I will eat this treat instead of working out. All the better!

4. I will have more energy to exercise after my nap.

5. I walked around so much at work today. And that is extra hard for me, since my lungs are broken and all.

6. My oxygen is so low today, I can't exercise. It might kill me dead.

7. My oxygen is super great today, my lungs must be nice and open already! Good job, me. Time for a nap.

8.The gym has so many germs. I can't go there September through March.

9. It is lonely to work out alone at home. It depresses me to think of it. If I get depressed, that is surely bad for me, too, right?! I must avoid it and all its possible causes.

10. Remember that hemoptysis in 2005? That was horrible. Don't want that to happen again. Better not do anything too crazy, today, July 10, 2009. Better take some Vitamin K and take it easy.

If The Top Ten Reasons Not to Exercise with CF did not address your own reason, maybe your reason is more serious. More important. More personal. For this, See my post on REASON #11 .

Why These Excuses Are Crap

1. Eat a power bar and suck it up. You can eat all you want in just thirty minutes (or so.) If CFers avoiding doing things every time they felt a bizarro hunger pang, nothing would ever get done. Ever. The CF world would stop turning while we all ate a Snickers. Learn to pack some goddamn snacks already.

2. Thinking about possible things that can go wrong with your body in the future is not a good reason to not exercise, not take a job you want, not date a boy/girl, or just about anything. I mean, jeeez, worry about all the things that are CURRENTLY wrong with your body and leave the future to the psychics (at statcounter.com).

3. Exercise will make you super hungry. You will eat more calories than you burn away because you will be craving craving craving foods when you're done and the next day. If not, drink an Ensure/Boost/ScandiBLAH and once again, suck it up.

4. There is no actual evidence that napping leads to increased exercise. Sorry, folks. Exercising, however, will make you sleep better at night so you will be less inclined to feel like you really need a nap during the day.

5. While your lungs might be "broken," they are not yet broken down. You need to keep driving that "1980's bitchin' Camaro" set of lungs around the block. And around the block. And around the block. For at least 30 minutes.

6. If you know your oxygen SATurations are low, it means you monitor your SATs, which probably means you have supplemental oxygen. So crank that shit to 4L and get off your ass.

7. If your SATs are great today it probably means that you exercised yesterday. Wouldn't it be great to have great SATs tomorrow, too? Plus, the Demonic Yukkies in your lungs don't remember that you exercised yesterday. They go ahead and continue their mighty wrath ignoring your exercise goals. You must beat them down with the Vow of the Cardio. (more on this, the Vow, in upcoming posts.)

8. Okay okay okay. The gym has germs. You have choices: invest in a sturdy piece of home exercise equipment; take the workout outdoors (yikes!); rent some good cardio DVDs or start to TIVO the exercise channel; or get the f over it, sanitize your hands, and go to the gym. You must make a choice.

9. It is not really lonely to work out alone. You can cough up the Demonic Yukkies and look like shit and play Justin Timberlake, or Meatloaf, or whatever your secret workout music is. Without the damn earbuds.

10. Similar to answer 2 above, thinking about all of the things that have gone wrong with your body in the past is not a good reason to not exercise. Continue a reasonable level of worry over all the things that are surely CURRENTLY wrong with your body, which might even lead you to crave exercise, and leave the past in your Hello Kitty Diary.

If The Top Ten Reasons Not to Exercise with CF did not address your own reason, maybe your reason is more serious. More important. More personal. For this, See my post on REASON #11 .