All About the Yuckies: for the cystic gals

P.S. Pre-Script: Remember, it's not too late to order CysticGal's limited edition chapbook, "Unto the East," by clicking HERE.

Onward . . .

This posted to Ronnie's blog in response to a young woman's posting to him. I think this is an important issue for us to think about and perhaps offer advice to young cystic gals (copied below)

Tuesday, February 16, 2010

A Young Girl's Cry for Help

I thought I would re-post this question and response because it applies to so many of us...

Young Girl's Post:
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with. I have a feeling I've posted things like this before. In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%. My weight has also dropped a few pounds because the machine was messing up. I don't know what to do with myself. I go into this cycle..hospital is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it. I have zero energy. I get out of breathe going up the stairs... At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible. What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.
>>

MY CG Response:

I hope this young woman in reading your comments, and I think you gave her some wonderful advice! I want to key in on one point she said, (paraphrasing) "I'm afraid to start coughing."- a lot of times, the truth is, doing treatments, coughing up stuff, getting out of breath in exercise, all of it- is painful, scary, and can even feel life-threatening. Even I am in a high stakes negotiation with my team about how many times per day I can do "forced coughing" maneuvers to bring up junk. It makes my 02 drop to the 60s and is very stressful on my body.

My point: looking back, I realized that this fear of the pain and panic associated with coughing fits was causing me to avoid them AT ANY COST. There were times in my life when I would avoid ever exercising around other people (including walking to my car, walking to a meeting at work, or pushing myself in rehearsal.) There were times when I did not formally exercise at home for weeks because of my fear of coughing. There were time when I avoided my medicines because they would make me cough so hard. Sounds great- right? Get through each day and cough LESS?

The problem: Avoiding coughing and specifically the admittedly gross, sometimes painful, usually exhausting process of coughing up yuckies - it's like avoiding crying. You wait and you wait and you wait and then you stub your tow and cry your eyes out in front of all your friends! If you avoid coughing, your lungs will get swampier and swampier, until you will experience even worse coughing fits that you will not have any control over- which will feed your fear again.

I think it's important that you think about how you feel about coughing- if you need to be angry or sad about it- or just admit that it's freaking exhausting and plan to cough up your junk and take a nap- so that you can get to be more compliant.

I think this issue is one of the least talked about realities in CF, particularly for girls who are not as (bear with me here . . .) likely to feel normally spitting out goobers. Doctors don't even enjoy talking about it that much and very little patient education seems to focus on it in post-adolescence.

It's a gross, exhausting, unsexy, un-dainty, nasty, sad, thing.

But you gotta do it. Every day.

Love, CG

So, what do you think?

Picture of the Day

First day home from the hospital. Full report:

I accomplished all of my hospital related tasks. Only exception: I did pulmozyme once and hypertonic saline once. Did not do either of them twice. Figured, first day home after hemoptysis. Takin' it easy.

I worked out for 20 minutes and it went well. I wore my oxygen all day and the only time I left the house was to go to CVS (ahh!) and to go the vet to get antibiotics (ironically) for S-Purry^.

Wanessa (ahh) comes tomorrow. Last week, she must have thrown out my Yuckie cup. So today, I had to make a new one. My yuckie cup is where I put the yuckies. I like it better than little diseased dixie cups in my house or in my garbage cans. I put my yuckies in it, and then I rinse em down the toilet, then I squirt some sort of yuckie-killing household cleaner (whichever one is around) in there, and rinse. I take pleasure in writing YUCK!! all over my Yuckie cup so that I know never to drink from it, and that it is okay to clean it with household cleaners. Neither yuckie, nor bleach residue, should ever go IN. They only STAY OUT!!

Goodnight!
CG

Quickie 2

The second quickie is never as good as the first.
First you do a quickie and you think, hey! that was fun!
Then you do a second and you think, well that's just great. now we're at this phase in the bloggy relationship. already. that's just great.

haha. ok, I'll change the subject.

Exercise today- Remember about two weeks ago I gave up running and I wrote a big bloggy about it with Homer Simpson at the top? How could I forget? These past three days of trying to run again were more stupid than Homer J. Simpson. My workout is going great every morning until I try to run for a mesely (measily? meazilly? Is that even a real word?) for 45 FRIGGIN seconds (friggin is not a real word but at least I know for sure how it's spelled) - I am ruining the glory of my morning workouts.

Tomorrow, the true test. First day of rehearsal. Must exercise at 5:45. That's right, in the aaaaaaaaaa mmmmmmmmmmmmm.

It's a plan.

In the meantime, my yuckie production has quadrupled. If I were a Yuckie Factory, which by definition, the CFers are, I would be rockin the profits.

Go me, get my Yuckies out.

Only downside: sorta wheezy. I think this will pass. I have always had the trouble that the clearer my chest is, the worse my asthma symptoms are. Ironic how my lungs can get irritated just by being exposed to the actual air and not layered in Yuckies, isn't it?

Ok, this Yuckie post is making me feel yuckie.

Goodnight to you,
CG

Quickie

Quick post tonight because I'm tired and just got home from a CFF fundraiser, which was fun but loud (dance party).

Update regarding morning exercise. So far, going well. Today not as good as yesterday, in that I had to stop half way through for some serious mucus production. ICK. Sorry. Did I forget to mention that you shouldn't read anything about CF if you aren't comfortable with the word MUCUS? ICK. Thus, I say, YUCKIE.

EDIT:

"Update regarding morning exercise. So far, going well. Today not as good as yesterday, in that I had to stop half way through for some serious Yuckie."

Yuckies lasted about ten minutes but boy that stuff can move. So that's good. I finished off at 20 minutes walking, only 45 seconds running which had marginal success, and at 4L of oxygen. I did not experience the same hunger which I did yesterday, but all the same nausea. :(

Tomorrow, I will go to 25 minutes walking, stick to 45 seconds running, increase to 4.5L of O2 and hope that the Yuckies can wait til the end of the workout. And yes, I do some Yuckie clearance before I work out.

Goodnight y'all.
May the Yuckies stay away from you.
CG

"And on the seventh day . . . "

"And on the seventh day . . ."

Cystic Gal took a nap.

It was just the day before yesterday that I wrote The Vow of the Cardio, and only yesterday that I revised it. Yesterday. The seventh day that never was. My entire reason for making The Vow of the Cardio was to break my bad habit of taking a day off from formal exercise. I do this every week. It is like a mental block or a secret desire to complain the next day or something. It is ridiculous. It is inexcusable. Yesterday, I DID NOT WORK OUT.

Yesterday: I sat in the sun for 1 hour, 15 minutes while reading; I took at 2 hour long nap; I fooled around with my blog here and there and all day long for certainly an hour or so total; I talked on the phone a lot; I made a contract for a gig coming up; I started the process on getting another contract for my new colleague; I had my friend T-Money over and even actively thought, "it is a perfect amount of time to work out, while she drives over!" BUT DID I? OH NO!

And my lungs were double mad at me for this decision. They were wheezy and making a crinkly noise by the time I went to bed despite my airway clearance. They were an f-in' nightmare this morning. They were glarpy and glorpy during rehearsal. They gave me shit during airway clearance today. They were pissed, and I could not blame them. My lungs can be real bitches when they've been ignored and lied to.

Of course, there is another side to this. Looking over my list of the Top Ten Reasons Not To Exercise With CF, I left one off, which I will now add. My rationalization yesterday is that my life comes first. Meaning, my social-spiritual-emotional-artistic LIFE. My LIFE comes before my health. I stay healthy so that I can live my Life. I don't live my Life to prove that I can stay healthy. This, I know, is something that not all CFers, CF parents, or CF caregivers (medical or non), agree with. They would say, "You have to stay healthy so that you can live your life," which on the surface, sounds true. Well, it is true. You have to physically stay alive so that you can continue any kind of a living breathing life whatsoever. However, my life with CF is about choices, grande sweeping conceptual ones like "My Life comes before my Health," and smaller ones like "I really want to spend time laughing with my friend tonight. I'm really enjoying this. I don't want her to go home yet," or the opposite, "I'm not going to that birthday party. I simply cannot. I have to stay home and take care of myself tonight."

The way that I take care of myself on one day may mean to stay up late hysterically laughing with my girl friend talking about boys (and yes, I'm older than 15), and some other day it may mean skipping out on an event I was really looking forward to, in order to work out and do meds and really push the airway clearance.

I will never be the CF patient who chooses only the second option. I will always live my Life first.

This got me thinking, how did I get here? Why do I feel so strongly about the Life element in my . . . well, life? Here is the first chapter of Cystic Gal: the future book or something.

Until my mid-teens I was under the care of physician Dr. Lewis E. Gibson and his nurse, M-huggy. His name is probably the only real doctor's name that I'll use on this blog, and I use it now because he passed away in 2008 and I know inexplicably that I will only say complimentary things about him. He was a pioneer in CF medicine for a lot of reasons, including his invention of the sweat test used to diagnose CF, and his study of many of the common practices in CF care including the use of mist tents on patients in the 1970s and prior years. During the time that he practiced medicine, he saw the expected age of mortality for CF patient go from younger than ten years old, to older than thirty. CF went from a "childhood disease" to a "genetic disease affecting 30,000 adults and children nationwide." I think of his mind as an extraordinary timeline filled with data, pictures of patients, difficult conversations with patients, patient conversations, wellness, illness, death and Life in CF with its successes, failures, and choices made in CF care.

A side note: Dr. Gibson often told the same stories over and over again. You will know a patient of Dr. Gibson's if you can get his account of where "the shot heard 'round the world" was fired from. He told me on more than one occasion that his motivation for studying the long-term use of mist tents in CF was not really motivated by the moisture levels in the lungs and bacteria growth and all that, but that, "it just didn't seem right anyhow," and "practices like that can do a lot of damage to the patient's sense of normalcy." He was interested in getting rid of the mist tents because they were terrifying to look at and made the kids feel like they were dieing. Oh, and they were actually helping grow the Yukkies. That too. Dr. Gibson cared about how the science served the patient, not just how the patient reacted to the "best science."

When Dr. Gibson retired, he wrote a poignant yet professional, emotional yet instructive letter to families and patients under his care. Though I don't know for sure (and I'm sure somebody could look it up), I doubt his practice had a great attrition of patients from year to year. He cared for me for 15 years from the day he met me at 6 months old and wrote, "Baby [CG] in good spirits reporting her chief complaint to be recent diagnosis of Cystic Fibrosis," until his retirement party in 1995. He cared for my sister for approximately 18 years until she left for college. He cared for my God brother until his lung transplant in 1994. My family and others made extraordinary sacrifices to remain under his direct care.

In his letter to families, after approximately fifty years of crafting, evaluating and revising CF care in his centers and for others, Dr. Gibson wrote a letter that reminded his patients to put their Lives, their families, their relationships, their happiness first. I am paraphrasing now, but will revise later - he said that care should never become so costly, so time-consuming, or so personally overwhelming to patients or families, that patients are not able to enjoy life.

I will always put my Life first because I want to enjoy Life.
My Life keeps me healthy.

(which is not, truly, the reason that I did not exercise yesterday. I did not exercise yesterday because I was being a bloggy, tanning, phone chatting brat. But I think this line of thought that I began here, is more valuable than that particular Epiphany.)

Goodnight. From Day One,
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

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 .