Sick and Happy » health obstacles

Tonic and Me: Traversing the Winter From Hell

Julie Desch — Wed, 06 Jul 2011 18:14:43 +0000

There is good news and bad news about getting old with cystic fibrosis. The good news is that I am getting old with CF! How great is that? Although it is happening to more and more people as medical care gets better and the median age of survival creeps upward, it still surprises me every time I have a birthday. I laugh at my wrinkles, chuckle at hot flashes, and marvel at the fact that I look, well, middle aged.

Living with an unpredictable illness is not all mirth and laughter, though. Some aspects of getting older are a bit more frustrating, at least for me. This is where Tonic, a new iPhone/iPad app, enters my story. As you probably know, staying healthy with CF requires more and more effort with age. There are more medications to take, more treatments to do, more effort is required to stay fit, to eat well, to manage CFRD, to get enough sleep, enough water, to do whatever it takes to make the plumbing system work well, remember appointments for the doctors and port flushes, to do…pretty much everything. Yet, just as the “CF care complication” factor increases, the ability of the mind (mine, at least) to keep track of it all begins its downward descent. This is poor design, but it is what it is.

I noticed it first with Advair. I can never remember if I have taken it. I don’t know… I seem to have a mental block. The block then spread to enzymes, vitamins, children’s names, books I’ve read, etc. While it’s much cheaper to be able to read the same book (and be entertained) multiple times, too many shots of ProAir or too many Pancrelipase capsules can be problematic.

I have officially dubbed this past winter, “the winter from hell.” For some reason, I had three episodes of pneumonia with resulting rounds of home IV antibiotics over the span of eight months. If this wasn’t enough, I cultured MRSA recently, so each round of IV’s included three different medications, all through IV access. IV meds must be refrigerated of course, and when they come in Entermates (as two of mine did), they need to be removed from the refrigerator a few hours before being used. When you forget to do this, 1) brrrr, and, 2) the infusion takes forever. Not to mention that during exacerbations, I do three treatments per day, try to sleep, try to remember to eat (when I have no appetite), and take the usual oral meds, supplements, and vitamins. I also have follow up appointments with doctors and need to get to the lab for blood draws three times each week. Did I mention the port dressing changes? I literally needed a flow chart to traverse through my day, or I would forget an essential item. Of course, most people get admitted to the hospital for this rather intensive treatment time, where, at least in theory, they keep track of these things. Wink. But I hate hospitals, and only go in if it is absolutely mandatory.

Enter Tonic. As luck would have it, I was able to beta test Tonic this “winter from hell.” Tonic is an app that helps you to remember and track whatever you need to track. Setting up Tonic is a simple task. You simply make a list of all that you want to remember and track. It took me about 30 minutes because my list of “tonics” was enormous. When it was done, though, my trusty little iPad would bleep whenever I had to do something. Take out med (bleep). Infuse this (bleep). Take this (bleep). Eat (bleep). Weigh yourself (bleep). Eat more (bleep). Trust me, the thing was bleeping all day, every day of each exacerbation. But I was so completely on track! I missed nothing. Nor did I do or take anything more than I was supposed to, because you check off each “tonic” as you do or take it. This is a very satisfying property of Tonic for anal compulsive people who like checking things off lists (like me).

Second, remember that the idea is to make your life easier, not to add another chore to your day. When my life is so complicated that I really need help, I use Tonic. But other times (like now) when things are pretty good, I let Tonic fade somewhat into the background. It still reminds me, but I turn off the “bleep” alarm and don’t always check off all the activities or enter a lot of data. You will find your own balance.

In summary, Tonic is just what I needed at just the right time. I would recommend it to anyone, whether you have a complicated regimen like mine, or just want to track a few things. If you decide to give Tonic a try, let me give you two hints. First, use it for all of the things you do for your health. Everything. Really. Meds, sleep, exercise, nutrition, water intake, everything you can think of that you know you want to do to be at the top of your game. For instance, Tonic even reminds me to journal, to stretch my hamstring muscles, and to meditate.

You can find Tonic on the web at http://www.tonicselfcare.com.

Operation Exacerbation

Julie Desch — Fri, 23 Apr 2010 16:14:43 +0000

Rule Number One that I hear myself telling people who are bummed out about their illness, whatever it is, is to remember, “there is more right with you than wrong with you.“

And that’s true, right? Think about it, by some miracle you are here on this earth, breathing, most likely able to walk around, enjoy food, listen to good music, pet your dog, watch Survivor…

Why is that? Because most of the 100 trillion cells in the body, each of which are probably performing thousands of events per second, are actually doing their jobs perfectly well right now. If not; well, you would not likely be reading this.

Now I’m not preaching here. I am mostly writing this for my own edification, because I just learned that I am now infected with MRSA in my lungs. I really can’t convey in words what happened in my consciousness when I learned of this last week. Maybe you know the feeling that really bad news carries with it. The sinking feeling in the pit of the stomach, the tight chest and throat, the heart racing and the blood draining from seemingly everywhere… Sh_t!

Then the anger, and the self-pity arrive. Sh_t (again)! Why me, why now? This is a REALLY bad time for this. I’ve got plans, Universe!

And then, the tears.

So, now I’m officially a CF Pariah. Gown, glove and mask everyone…here comes Julie. Man, I’m pissed. And of course, really what I am is scared. What does this mean? Is my CF going to get worse? Will the freakin IV’s even work this time?

So, I allowed this to go on for a couple of hours. Then, I was better. Then, it came back with a full and serious vengeance over several days. And now, finally, I’ve decided to respond instead of reacting. Or at least…to try.

The first thing that came to my mind was to write the post I was going to write before the fateful telephone call. It seemed to me that writing about having a “positive exacerbation” could only be credible if it were to be created during an exacerbation.

So, even though this is a slightly unusual (for me) situation, it is most certainly a “CF adverse event” and just as certainly would be best handled with a positive attitude.

Here are a few things I do to make my three weeks of IV’s…my “home vacation:”

1) First, since I can’t exercise strenuously, I don’t. I legitimately and compassionately stop pushing myself. A gentle walk every day that I feel like it is about as hard as I’ll push these days. After the port goes in and the PICC comes out today, my arms will be free at last, free at last. So as I feel stronger…I’m back to those kettlebells! Have I told you about my favorite new exercise? Something else to post about.

2) I have incredible friends who have been incredibly kind. I will appreciate them every day, in some way. By telling them what they mean to me, I will add positive energy to their world and mine.

3) Sometimes it takes a real blow to the illusion of stability to wake me up. This has been a great one. I will resolve to appreciate what is good in my life. The best way I’ve done that in the past is to keep a gratitude journal, and vow to write in it every night three good things that happened that day.

4) I have a post that I have been writing in my head for weeks now about the growing importance of meditation in my life. I have been trying to figure out how to stress this without sounding like a preacher…hence the silence about meditation. But it has been SO key for me this last week, that I will write this post. It will be the next one. I will pour my soul into it, for both myself and for those two or three readers I have:-).

So if you like this plan, or if you have some suggestions, or if you’d like to share how you deal with your own “operation exacerbation,” please leave a comment!

“Port”al

Julie Desch — Tue, 09 Mar 2010 23:07:41 +0000

Eckhart Tolle likes to talk about “portals” to the Now. My favorite of his suggested portals is focusing on the body sense. It is a very simple exercise: you simply ask yourself, “Without moving or looking at my left big toe (or whatever body part you choose), how do I know that it is there?” Immediately, you are connected to the feeling present in the body, and when this remains in your focus, you are in the present moment. Try it. Pick some part of your body, close your eyes and ask yourself, “How do I know that ______ is there?” Then, let your attention move to feeling the entire body this way, as a whole. This is using the body as a portal into the Now. And of course, the beauty of being in the Now is that you can’t be uselessly rehashing the past, or pointlessly rehearsing the future. Life is always Now anyway, and this exercise places you right smack in the middle of it.

Shifting focus….I was thinking about ports the other day. Central ports…you know the ones. The things we hate to think about needing, because it means we need antibiotics frequently enough to justify the risk of an indwelling central line. A central port provides immediate and easy access for administration of life saving medication as we watch our lung function diminish. I don’t know about you, but I have always had a visceral reaction to the idea that I may need such a port someday.

So when my partner mentioned the other day that maybe I should consider getting a port, imagine my surprise when my immediate thoughts (really) were about Tolle, and how “port” and “portal” clearly come from the same root. So now I’ve looked it up and, sure enough, the Latin root, porta, means “gate.” Tolle’s portals are gates to the Now, and a central port is a gate to, well, your heart and circulatory system. The next thoughts I had were about the bright side of having a central port. In other words, I didn’t freak out.

There are definite pros to having a port. No more PICC lines, for one! My PICC’s always have to go into the right arm (clot in the left–from a PICC, of course), and always have to be put in by Interventional Radiology (I love those guys, but really…it’s another appointment, it’s more radiation, and they SEW the sucker in so it’s hard to pull out yourself:-)). Not only that, but as you know, you can’t lift weights when you have a PICC (did I mention the clot in my left arm?). So no PICC, means no three week layoff from one of my favorite ways to stay in shape.

Maybe it’s my age. Maybe it’s wanting things to be simpler. Maybe this just means I don’t care as much about what “other people will think.” But I’ve been thinking about it in a very “accepting” kind of way, and will likely talk with my doctor about this the next time I need IV’s. (He’ll probably say, “Are you crazy?”)

Which brings me back to Tolle. Full circle. Maybe a central port could be viewed as a sort of metaphor for a “portal” to Acceptance-with-a-capital-A. There’s no denying or fighting the fact that the lungs are needing some serious help when you submit to a port. It would be a daily visible reminder of my mortality staring back at me in the mirror each day. It would be hard to ignore evidence like that. Still, I’m not freaking out for some reason…

I’m liking this metaphor.

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Does Wellness Coaching Work If You Are Sick

Julie Desch — Fri, 09 Oct 2009 23:47:06 +0000

It seems like years ago that I wrote about wellness coaching. This was a general discussion of what wellness coaching is and how it works. Today, I think it would be a good idea to focus a discussion more on how wellness coaching could help someone with a chronic illness. Is the coaching process or the goal different for someone who is, by definition, sick? Is there a point to wellness coaching if you carry a diagnosis that isn’t going away? Is wellness coaching focused on making the illness go away?

One thing I want to point out up front is that when I do wellness coaching with someone who has a chronic illness, this is not the same thing as “chronic illness coaching.” There is such a thing as a chronic illness coach. They might help someone work with a specific illness in order to handle it better. This type of coaching, to me, is very focused on the “illness,” and not the intact being who lives in a body that is not perfect.

The focal point of wellness coaching is not the illness and how you are in relation to it. Instead, while a wellness coach will ask you to see clearly where you are right now, he or she will also ask you to envision where you want to be. Then together you discover the path from A to B. Yes, the fact that you live with an illness will come into play as you define your path, as will other obstacles. None will be emphasized over the others. Certainly some may require some complex navigation strategies.

Instead, what is emphasized in a wellness coach/client relationship is that wellness is not a specific target point. You don’t one day reach “wellness” and from then on, fight to stay there. Rather, I like to think of wellness as a “frequency” that you tune into. Regardless of the brand or power or age or color of your tuner…even if it has a broken knob or two…every tuner is capable of finding this frequency.

From Outside the World Of CF Research

Julie Desch — Thu, 03 Sep 2009 20:40:43 +0000

Just randomly surfing while “puffing on my pipe” just now (I hope you all realize this mean a nebulizer), I ran across this. Now let’s figure out how to attach this sucker to Pseudomonas…

Kary Mullis\’ next-gen cure for killer infections

Amazing stuff.

Five Reasons You Must Start Resistance Training Today!

Julie Desch — Thu, 30 Apr 2009 18:00:15 +0000

I love list posts. They are so easy to write, and even easier to read. If only adopting the habit they propose were so easy…

But in this case, it is! Resistance training is not difficult to do. You don’t need to join a gym. There is no requirement for fancy equipment or expensive clothing. While a routine does take a little bit of time, you will begin to see and feel significant results in as little as 20 minutes 2 or (ideally) 3 sessions per week. You could multitask, and do your routine while watching Scrubs reruns. How simple is that?

Your own body weight can provide all the resistance you want or need, or if you are so inclined, you can purchase some very reasonably priced resistance tubing to use in your living room.

Here’s the trick. Don’t fall for the fitness magazine articles that suggest complex moves, or drop sets, or supersets, or unbelievably crazy-sets. Pick exercises that target multiple muscle groups like squats, lunges, front and side plank, or good old fashioned push-ups, and just start doing them! Here is why you should start today:

Reason 1) Resistance training is a friend of your metabolism. Why is this? As you begin to overload your muscles beyond what they are used to, you injure them slightly (don’t go for major injury…that doesn’t do any good at all). You cause little tiny microtears in the muscle fibers, and this is why you are sore one or two days later. But this is good news, because as your muscle fibers heal, they become stronger and bigger. You add muscle mass, and over time, this increases your metabolic rate.

How does that work? Body fat doesn’t do much. It just sits there and looks back at you in the
mirror. It doesn’t use up much energy. Heck, it doesn’t even need much of a blood supply since it requires so little maintenance. As a result, it burns very few calories.

On the other hand, muscle is very active. It requires food (glucose and amino acids) and burns tons of calories by just being there. Clearly, if you want to be a lean, mean, calorie burning machine, you want as much muscle as you can get.

Reason 2) Muscle, because it requires glucose and amino acids, is very sensitive to insulin. Insulin opens the doorway to to the little muscle cells, so glucose and amino acids can get in. If you are insulin resistant, as in Type II diabetes (and possibly CFRD), lifting weights will increase your insulin sensitivity as you build muscle mass. A finely tuned insulin sensitivity mechanism is required for a stable blood glucose level, which leads to good health.

Reason 3) This is a big one for me, and maybe you can relate. Building muscle and feeling and being strong physically is one area of my life where having cystic fibrosis doesn’t even matter! My lungs may not be the best in the gym, but I will take on any woman my age in a push up or pull up contest! This is a very empowering feeling…I have at least a modicum of control over my body which is otherwise at the mercy of my lung status. Now, some days my lungs even interfere with my time at the gym, and that is OK. I know that when I recover, I will be back, strutting around the gym with the big boys, knowing that my muscle fibers are no different than theirs:-)

If you have an illness other than CF, lifting may just provide the same benefit. Lifting weights is a very black or white thing to do. You do it and you see and feel results in as little as two or three weeks. You have control of this. It may not feel like you have control of much else, sometimes. But you do have control over this.
Reason 4) More and more studies are showing that well-designed resistance training programs in post-treatment management of cancer patients and survivors are beneficial in improving health status and quality of life. This is true in other chronic diseases as well. Weight training is anabolic, meaning it builds up the body. Often, treatment for illness is catabolic, or breaks down the body (think steroids or chemotherapy). While these treatments are necessary, we can counter their bad side effect of breaking down tissue by weight training.

Reason 5) Weight training is fun! Ok, maybe I’m in the minority thinking this, but stand by this statement. When you get over the initial “I have no clue what I’m doing,” and move through the “Oh my God this huts,” you begin to see improvement! And this is fun!

Are you ready to begin? I’m starting a YouTube channel where I will teach easy, and very modifiable exercises that anyone can start doing today. Check it out, and subscribe today!

Can I Exercise When I’m Sick?

Julie Desch — Tue, 07 Apr 2009 21:34:15 +0000

Not that I’m an expert on this… The last time I had a PICC line I ended up with a DVT (blood clot) in my arm and had to be on blood thinners for 3 months. Why? Well, I’m not exactly sure, but it could be because I didn’t want to atrophy away, so I was doing push ups as well as my daily walk. Dumb.

So maybe this does make me an expert because I definitely know what NOT to do.

Here’s my take:

If you have a PICC, NO UPPER BODY RESISTANCE TRAINING NOT EVEN PUSH UPS WHAT ARE YOU THINKING?! But when you start feeling better after the first few days of “happy juice,” as I now call it, you can definitely go out for a nice walk every day. Or get on an stationary exercise bicycle. Basically, the bottom line is don’t push it too hard, but it is good to move! If you don’t move for three weeks, it will be very difficult to get motivated again, and you will lose muscle mass, a very bad thing indeed. Be gentle. Be mindful. But, move.

If you have a fever, no exercise. Rest.

If you are just coughing more than usual, but don’t feel too bad…well, this is a tricky one. Are you losing weight? Are you eating well? Do you have energy? This is probably a good time to call the clinic, let them know what’s going on, and ask for your doctor’s opinion on the exercise question. Do I do that? No (well, I ask myself and I usually tell myself to quit being a wimp and do some push ups). But I’m learning to not listen to that inner little sergeant.

Last week (Week One), was the “walk every day” week. My dogs loved it. I also did daily Qigong (gentle stretching).

This week, I’m adding some lower body exercises (squats) and curl ups to the above. Feeling good! Zero cough. I love this happy juice.

Next week, who knows…but it won’t include push ups.

Do you ever feel like you are in over your head?

Julie Desch — Tue, 17 Mar 2009 20:08:53 +0000

Today, I am taking a crash course in internet marketing. Why? This is what I keep asking myself.

The reason is that I really want to figure out how to get my upcoming e-book, “The CF Wellness Boot Camp” out to as many people as possible.

To do that, I am learning, I need a “LIST.” So I am madly learning about how to create “opt in” boxes everywhere, and how to create an e-newsletter (to entice ya’ll to sign up to my “LIST),” to use FTP to do weird things to my blog, to tweak HTML to make things look better, and generally, to do all kinds of things that ARE NOT IN MY JOB DESCRIPTION!

But, alas, one of my strengths is “love of learning,” so I should be very happy for a very long time. Please be patient with me. I have great ideas for the newsletter, including exercise instruction and demonstration, interviews with nutrition and stress management gurus, and so much more. Please sign up. I promise you won’t be sorry!

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Do You Ever Have One Of Those CF Days?

Julie Desch — Wed, 04 Mar 2009 00:00:45 +0000

There’s been a bit of a lull in my series on shaking up your CF child’s exercise routine. But, I have good reason. I promise, I’ll return…as soon as….it works.

My life

How To Fit Exercise In

Julie Desch — Sat, 31 Jan 2009 04:17:35 +0000

In a previous post, I discussed time in a very esoteric way. Yes, Eckhart Tolle is right in a way…time only exists in a horizontal dimension, the one we are used to dealing with most of the time. CF and all of its accompanying “life situations” exist there, too. It’s enlightening to understand that we don’t have to be dictated by that dimension all of the time. We can practice entering the “now” and get vertical anytime we want…

Alas, one must also be practical in this world. So, let’s get real about time, shall we? Yesterday, when I finally got in the shower and first brushed my teeth at 3:30 pm…exactly 9.5 hours after awakening, I realized I needed to write this post. Mind you, none of those 9.5 hours were wasted. And I don’t even have a real job!

I don’t need to go into the specifics. If you are reading this, you already know the laundry list of things that must be done once, twice, or even three times daily regarding health care. The meds, the nebs, the Vest, the food, the insulin, the enzymes, the vitamins, the doctor’s appointments, the trips to the pharmacy, the uncomfortable moments (hours) where you just want to be left alone to deal with your digestive system…

This is all before “life” stuff…work, school, kids, spouses, friends, churches or spiritual activities, fun, Grey’s Anatomy….

My first point: “When in the WORLD is there time to exercise?” is a reasonable question.

My second point: It needs to be part of that first list…the essential health care activities, or else it just isn’t going to happen.

The number one reason CFTR-able people don’t exercise is TIME, so it stands to reason that the addition of hours of self-care does not make the problem any easier. Nobody has time. That is a given. Accept it as a given, and make time anyway.

I have coached and known many people with CF, and I have not once met someone who was not happy and proud of themselves for having started an exercise program. Yes, it is hard to fit in. Yes, it is frustrating to get sick and have to start over from what feels like ground-zero. But, it is always worth it.

HOW TO MAKE TIME ANYWAY

Tip number one: If you keep a scheduler, or planner, or palm, or iphone…whatever, schedule yourself in FIRST. Start with just 20-30 minutes. Go for a walk or do some yoga. Get into moving your body in some way, every day. Over time, splurge and give yourself an HOUR a day.

Tip number two: Schedule a reward for immediately after your exercise. Make it small, but something you really want…a latte, a nap, whatever. You have to really want it, and you DON”T get it unless you exercise.

Tip number three: Plan to exercise with someone else. Set a date, time and place. The accountability factor kicks in, and you tend to show up.

Tip number four: Try hard to establish the habit of doing your exercise first thing in the morning. This is the only way I made it through medical school/residency and stayed healthy. It was a grueling schedule, but I know that it was the early exercise (accompanied by the early to bed the previous night) that provided me the energy to live through it.

Tip number five: Set a goal. Make it appropriate for you, but also, set it high enough that it will force you to stretch yourself a bit. You don’t grow muscle mass or endurance or flexibility without stressing the system. If you are new to running, schedule a 5K. If you are new to yoga, try to make it through an entire class! If you are new to weight training, work up to your first unassisted pull-up.

Tip number six: When you reach your goal, tell everyone you know how great you are, and celebrate!

Sick and Happy » health obstacles

Tonic and Me: Traversing the Winter From Hell

Related Posts:

Operation Exacerbation

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“Port”al

Some Other Articles You May Enjoy

Does Wellness Coaching Work If You Are Sick

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From Outside the World Of CF Research

Related Posts:

Five Reasons You Must Start Resistance Training Today!

Related Posts:

Can I Exercise When I’m Sick?

Related Posts:

Do you ever feel like you are in over your head?

Some Other Articles You May Enjoy

Do You Ever Have One Of Those CF Days?

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How To Fit Exercise In

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