My Weekend at the RKC
by Julie Desch on May 15, 2011
in cystic fibrosis, exercise, Kettlebells, motivation, quality of life, RKC

weekend constant companions
Today is a new day, and instead of focusing on what isn’t working (most of me), I am going to write about my experience at the RKC in Minnesota just two weeks ago (it seems like two years ago at this point).
For those who don’t know, RKC stands for Russian Kettlebell Challenge, and the weekend certification is an intense three day immersion into technique and proving that one is “worthy” of the title “RKC Instructor.” It is not for wimps.
Kettlebells have been around for hundreds of years in Russia, but are relatively new to the scene here in the US. They were brought here by the Evil Russian, Pavel Tsatsouline, a former Soviet Special Forces physical training instructor. He is known now as the modern King of Kettlebells, and it is his methodology that is taught by “official RKC’s.” Since bringing the kettlebell to this country, Pavel’s proteges are found on the Secret Service, Counter Assault Team, among US Navy SEALS and Force Recon Marines. And then, there’s Julie.
Now you may wonder, why would a 50-year-old woman with cystic fibrosis want to be in the company of men and women who are either hard core trainers or athletes or counter-terrorism experts? Kidding on that last one…
Yeah…I wondered that, too. Especially at the meet and greet that happened the night before it all began. I was there by myself, of course (who would accompany me to this?). I stood in the room looking around at the healthy, muscular men, all many many years younger than I, and the equally healthy and fit, excited young women…I was looking for some older faces. Please God, don’t let me be the only old person AND the only half-assed lung person.
Don’t get me wrong. People were friendly. Everyone was incredibly friendly to me. Not just friendly, but reassuring me that I wasn’t crazy to be there (oh, what they didn’t know). Many, many older people come to these certifications, they assured me, and some even came just to meet a personal goal, like me, rather than to be over-prepared for their upcoming SEAL training.
Needless to say, I went to bed with just a mild bit of trepidation. Would I pass? Pass…hell, would I live through this?
When I say, “pass,” what I mean is to meet all of the requirements of the weekend. This is not just to pass the dreaded “snatch test,” (A snatch is a move where the bell is brought -with one hand-from between the legs to over the head with a strait arm in one fluid motion. My challenge was to snatch a 12 kg kettlebell 100 times in 5 minutes, switching arms as needed. BTW–12 Kg = 26 lbs). Just FYI, if I were to go to the garage right now and try to snatch my 12 kg bell for reps, I might get in 3 or 4 before I had to stop and gasp for air). The snatch test is what everyone fears. It sucks. Seriously…even for healthy people. It is a test of muscular endurance and aerobic capacity for which one must train for months in advance. It’s also a test of sheer will, and the ability to endure pain.
But wait, that’s not all. In addition to the snatch test, women must do the arm hang for 15 seconds (cake), and a woman of my size has to show perfect technique in the double kettlebell (52 lbs) swing, double clean, double squat, double press, and the single snatch…all for five consecutive reps. In addition, one must show perfect technique on an unusual exercise with an equally unusual name, the Turkish Get-Up. None of these were cake. Instructors were very picky about perfect form…for good reason–if they were to send people out to teach with sloppy form, the whole RKC brand would be harmed. Form is everything…it prevents injury and promotes safety. Nobody passes without perfect form.
But even that is not all that is necessary to pass. The hardest thing required is that you actually have to get through each day of grueling practice, random “punishments” for the whole group if someone messes up by wearing the wrong shoes or sitting with a flexed spine. I’m serious…they are very serious. The first of such punishments come early on Day One, when we had to walk around the block carrying our snatch test bell. This is way harder than it looks. Here we go, with yours truly leading the pack:

yep, that's me in front
And finally, there were “workouts” scattered throughout each day. Each were short, only 10 to 20 minutes, but can you spell i-n-t-e-n-s-e? I’m blanking on most of them…I’m sure my brain is trying to spare me the memories.
Another requirement for passage was to demonstrate on the last day that we were capable of teaching what we had learned to bussed in “victims.” These were volunteers from the community who “wanted” (read: they were bribed by great discount prices on Dragon Door products) to learn from newbie instructors about the latest greatest exercise craze. We each got a victim to teach for 45 minutes, and then to workout for 10 minutes. I had a great guy who already knew a fair amount. I got lucky.
Finally…the last requirement…the “graduate workout.” If you don’t complete it, you don’t pass. It can take you all day if you need it, but you and your kettlebell (now your best friend) make your way up and back a huge field, stopping to swing and snatch away. It took 40 minutes. It was cold…I swear I saw snow (May 1, in St. Paul, MN). I couldn’t feel my feet. But when I completed that last swing, I was the happiest girl in Minnesota. Heck, I wasn’t even the last one to finish!
Following the Grad Workout, we all waited with baited breath for our one-on-one meeting with our team instructors, for overall evaluation and the final decision…pass or “you’re fired!” (not really, if you don’t pass, you get a chance to work on your flaws and send in a video of you correctly performing the required exercise). About 30% don’t pass. These are athletes! Seriously.
So, long story short: Here is the evidence that I gave it my all:
This is after Day One. I read somewhere that we did about a thousand swings on Friday. I didn’t count, but I would believe it. After I took this picture, I ordered room service because I literally could not move from the chair. The bummer was that I could not sleep, 1) because I was on California time, and 2) I went into the weekend thinking the snatch test was on Day One. Turns out they moved it to Day Three…so I was still nervous about whether I could do it…even more so actually, because I knew that by Sunday I might not be standing.
The morning of Day Two, I got out of bed with nary a single silent muscle fiber. They were all screaming at me. It reminded me of the day after the first day of basketball practice when I was in high school…only worse because I don’t believe I was fifty years old back then. It didn’t help that I had to get up an hour early to do my treatment. Yes…I did them all … except one.
Day Two went from 8 am to 7:30 pm. Yes it did. There was a 45 minute break for lunch and scattered water breaks through the day. Also scattered through the day were more workouts, and more punishments. Is this what military boot camp feels like? Learn and practice, all day, the clean, the press, the front squat, the snatch. A favorite workout of mine this day (not) was called the “breathing ladder.” Basically, it consisted of swinging the kettlebell for a given number of reps and then only resting for as long as it took to take a given number of breaths. The reps increased, as did the number of breaths allowed, until we were all dying (not really). The purpose was to teach you how to slow down your breathing when stressed and breathe from the diaphragm. A laudable goal, yet I don’t recommend this for anyone with a lung disease. I did it, but the whole time I was wondering if I was about to desaturate right there on the floor. I collapsed in the bathtub that night, wondering why the Holiday Inn bathrooms didn’t have those little strings you could pull for help, like they have in hospitals and assisted living centers. I had only myself to blame. No sleep again, but this time it was due to Prom night, and the collection of very drunk women who wanted to party in my hallway at 3am. They were actually yelling. I hope I never acted like that.
Day Three was there before I knew it. I woke up determined to tape my hands in a way that would protect them from inevitable tearing during the snatch test. I had read about this technique, and had brought with me all the requisite medical equipment. I was a doctor, dammit. I could help myself out a little. Here is my beautiful tape job, done while inhaling salt (this is tricky, if you think about the number of hands required to 1) get taped, 2) do the taping, and 3) hold a nebulizer).
So when the day starts, we all gather in our teams, and our Team Leader, Andrea Chang, says, “I need to see all hands.” I hold mine up, proudly. She looks at me and says, “Take it off, I have to see the skin.” What? I was chagrined. My masterpiece…in the garbage. Apparently, they needed to see intact skin before the testing was to commence. If anyone had an open wound, they had to be taped. This is where you might say…but you were taped, Julie. Yes… It didn’t help that when she looked at my hands, she said, “You don’t need tape…you’re good.” Ha! Good… At this point of the weekend, I was not good. My lungs were GREAT, but everything else hurt like hell.
Go lungs. And they did. The tests came, and went. Technique tests were a bit nerve-wracking, because you know they are watching every single hair on your head, every angle, every point of contact with the ground, every joint position. It was more of a mental test than physical. But, then came the moment of truth. I run outside to do the snatch test…remember, 100 in 5 minutes. I had done this once before, so I had a modicum of confidence. Yet, this had been before my most recent bout of pneumonia, so it was a very tiny modicum. I really didn’t know if I could. I remember thinking as I bent down to get set up to start, (and I know this sounds corny, but it’s true), Kathy…Tom…I’m doing this for you guys, too. And I started. I don’t remember it really. What I remember is that with 10 seconds left, I had to go ALL OUT to get the 100th done. But, I did…there was no way I was going to end up with 97, or 98, or,God forbid, 99. And then I seriously sucked air for many, many minutes.
When the Graduate Workout time came later that day, I knew I could do it. If I could pass the snatch test, I could do anything. I had a lot of folks cheering me on, by this point. It felt unbelievable. I was strong. I was woman. Did you hear me roar?
The whole thing was surreal. The feeling of pride that came over me after the last swing was more immense than when I graduated from medical school. It was the hardest thing I have ever asked my body, and my will, to do. And I did it as a 50-yr-birthday present to myself. When times get tough, as they kind of are now, even reading what I have written cheers me up. I am tough. I am a fighter. CF will never win. I will decide when to go back to my corner.
R…K…C!!!!

Why I Hate CF
by Julie Desch on May 14, 2011
in cystic fibrosis, general, quality of life
I decided today that this Boot Camp posting thing has to be postponed, for now. I know when I am avoiding writing because I don’t want to face my blog that I need to change subjects. Perhaps this is because I don’t feel like writing about how to “come back” from being sick in the midst of being sick. Instead, I feel like ranting. So here goes:
I’m in a bad mood. I hate this disease. I hate the fact that this is my third bout of pneumonia in less than eight months. I just had this “cute” blog post idea of listing my seventeen-part day (with each part being a picture of each CF medical regimen item in my current plan to stay alive). But I don’t feel like being cute. I’m mad. I know this shouldn’t be a blog topic on a site called “Sick And Happy.” It’s only 50% appropriate. But let’s face it, happy is only one side of a coin. There is no happy without sad…or mad…or afraid.
This is when I wish I could call up my sister, Kathy and see how she did it. Or my brother, Tom, and ask what his secret was. But I can’t. I have to find my own course of action. For now, it is to write until the tears stop flowing and the dog gives up on trying to console me to go back to the couch and sleep.
There is nothing fair about a disease that consumes your entire day…and night. That, no matter what you do to keep it at bay, never leaves you alone. There is no one to do it for you.
If this were really a blog about how positive psychology techniques can help you cope with chronic illness, I would now do something like count my blessings…or appreciate the fact that at least four lobes of lung tissue are relatively clear…or that, somehow, I have not lost any weight this time around. Perhaps I would write a letter of gratitude to someone. Or maybe I would write about my “best possible life” to cultivate some optimism. No, not this time. Instead, I am going to practice a mindfulness technique. I am going to be aware of every f’ing thing I hate about this disease, in list form. Maybe I’ll come up with seventeen.
1) I hate that I can’t call up Kathy or Tom.
2) I hate that it is 11:09 in the morning, and I have yet to have time to eat breakfast because my entire day has been treatment and IV infusion focused.
3) I hate that I have to set an alarm in the middle of the night to stop my IV and flush my port.
4) I hate that I have a port, a week before a trip to Hawaii, where I will try to cover it up so other people won’t wonder what is wrong with me.
5) I hate that I can’t seem to gain any weight no matter how many milkshakes, Jack in the Box Grilled Bourbon BBQ Steak Sandwiches, and Boost Plus that I consume.
6) I hate that when my sons come home from school with a friend, they are embarrassed to find their mother lying on the floor, doing the Vest Boogie while infusing antibiotics. ”Oh that? My mom’s sick, that’s all.” Unspoken is the fact that “other mom” is the picture of health and has more friends than God, and probably cooks hot meals every night. Unfair.
7) I hate that I feel guilty that I want company at the same time that I don’t want anyone to see me at my lowest of lows.
I hate my lungs…every last lobe…down to every single alveolus. I don’t know why this came out as a smiley. Maybe God is talking to me.
9) I hate spending enough time on the toilet to count the tiles on the floor, wondering how painful it is going to be to conclude this particular event.
10) I hate worrying about traveling now, wondering if something bad is going to happen far, far away from my CF clinic.
11) I hate not being able to hug my father, who once-upon-a-time had a MRSA skin infection.
12) I hate the fact that I am paranoid about even visiting him at his home in a retirement center, because such places are havens for resistant bacteria.
13) I hate that I have to get mad at my oldest son for not covering his mouth and nose at any slight eruption of air. And he never remembers, so…I get mad a lot.
14) I hate wondering when the inevitable downslide is going to really get going, and how I am going to cope, and what my kids will think.
15) I hate that every time I get sick now, I need an entire team of specialists (or House) to figure out what to do with my lungs, my liver, my kidneys, my psyche.
16) I hate needing so many people so much of the time…doctors, partner, friends that I don’t want to ask for help, siblings.
17) I hate that today is a great day for Little League baseball, and it doesn’t even sound fun.
I’d better stop. Seventeen hates…seventeen self-care items per day. Sounds balanced. Tomorrow will be a better day, and maybe I’ll feel like being cute.

Almost Six Months Later….
by Julie Desch on April 13, 2011
in BOOT CAMP, cystic fibrosis, general, home IV's, motivation, quality of life, Wellness

Well, it has been a very long time, hasn’t it? You may wonder where I’ve been…why no words of wisdom from the now 50-YEAR-OLD Julie?
The reason is that it has been a winter from Hell, and I will just leave it at that because my mother (RIP) always told me that if I didn’t have anything nice to say, I should just say nothing.
But, here I am, ready to begin this strange past-time of blogging again, wondering if anything will fall out of my brain. I decided while on my walk today that I will begin by doing what is easy: posting what I have already written. Lame, I know, but let me explain.
Two years ago, I decided I knew exactly what would be helpful to other adults with CF, and I set out to write it up. I fondly titled this project my “CF Wellness Boot Camp.” The idea stemmed from the fact that most people with CF, and certainly all adults with CF, are increasingly thrust into what I like to term “exacerbation exasperation.” Say that five times as fast as you can. You know the game: you go about, living your life, doing what you do, feeling as good as you feel, and then WHAM, you are sick, need IV antibiotics, and essentially life must go on hold. Your body-your master- revolts, and you are its slave.
Three weeks later (and can I just get a hand here for Western medicine?) you are better. Your lungs are clear-or as clear as they get. You now have enough energy to shower. You look at your desk, your kids, your spouse/parter, your dog(s), your list of everything you were supposed to do back on the day before the aforementioned body revolt, the scale now reports that you are five lbs lighter… You take this all in, and the only thing you want to do is crawl back under the covers. Does this happen to you? It’s all so overwhelming, this re-immersion into your life. Whatever fitness progress you made before your illness is gone. The stress of being completely knocked down is replaced with the stress of getting up. At least, this has been my experience.
So, the plan for the Boot Camp was to outline a three-week plan (everything seems to come in blocks of three weeks) to begin anew and re-enter the world with some new, healthy habits to accompany those pristine (?) lungs. So I put on my wellness coach hat and began to write.
This was quite a project for me. I wrote for a couple of months until I was happy with the content. I then began to research how to make it into an e-book, put it on the website, and, generally, do all of the technical stuff that one must do in such a project. Roadblock. Big time. Julie is not “tech-y.”
Thank God for David Mahoney, though, because he really tried to help me. I was just not able to keep the ball rolling, and the project sat for two years, lost but not forgotten, on my hard drive.
So that brings me to my walk this morning. I want to blog again, so why not start by posting my 21-day plan? Maybe when it’s all up, I’ll figure out how to bundle it into a pdf and send it out instead of the fizzled out newsletter promise in the opt in box? Who knows?
So, as my favorite email come-on’s say, watch your inbox (for those who have opted in)! Tomorrow we begin the CF WELLNESS BOOT CAMP!
To your health….


Mindfulness-Based Stress Reduction for People With Cystic Fibrosis
by Julie Desch on September 16, 2010
in cystic fibrosis, happiness, mindfulness, positive psychology, quality of life
If you are interested in the class, more information can be found, as well as a direct registration page, here:

Hot flashes, Hand-Me-Downs, and “Honey, did you see me take my ___________ today?”
by Julie Desch on March 16, 2010
in general, positive psychology, quality of life, Wellness
I don’t know about you, but I’m getting older. Last I checked, I was well into living my 50th year. Now, nobody has actually ever told me, “Julie, you are not likely to live to be 50,” but having not lived in a cave all of my life, I have received this message loud and clear. So what am I doing here?
Here, for example, are a few random things I hadn’t planned on:
1) Hot flashes and menopause: Isn’t it weird that every time I put on my therapy Vest, I have a hot flash? I don’t think they were designed with this in mind.
2) Wearing hand me down jeans that used to belong to my son: It’s true. My 12 year old son is now giving me his outgrown jeans…and they are too big. I’m trying to grow into them.
3) Forgetting whether or not I have actually done pretty important things: Did I take that pill? Did I inhale Advair? ”Honey, did you see me inhale this?” This is truly frightening.
4) Wondering with fear and fascination what will happen if I actually outlive my disability payment: I don’t think the insurance company was expecting this either.
5) Not being able to see whether the needle is actually going to hit the tip of the Colistin vial: Are they making that bulls-eye smaller, or is it just me?
6) Getting so used to the ringing in my ears, that is seems like part of the radio background: Oh, the years and years of tobramycin….
7) Routinely wondering if it is possible to lose one’s colon down the toilet: Ok, this is a bit graphic. I don’t know what the magic number of hours logged will be, but at some point, don’t you think gravity is going to win?
8) Getting too “old” to run (read: low back and knee pains): I thought the lungs were supposed to go first.
9) Making more cracking and moaning sounds getting out of bed in the am than my 16 yr old border collie as we hobble to the kitchen to make coffee.
10) Wondering if I might outlive yet another dog: I don’t know which to wish for.
11) Living long enough that those foolish years of laying out in the sun on aluminum foil lathered in baby oil has resulted in my wrinkles having wrinkles: Who knew that shins could get wrinkled?
12) Needing a screening colonoscopy: Of course, if we wait long enough (see 7 above), we can probably just examine it directly:-)




