I was scheduled to walk the San Francisco Rock-n-Roll Half-Marathon last weekend. Unfortunately, life had other plans for me and now I have a PICC in my arm to deliver antibiotic nectar to my lungs, as I ended up with pneumonia 5 days before the race. Sigh. Such is the life with CF. You think you are on top of the world, conquering all there is to conquer as you build up to walking 13.1 miles, and then BOOM, you are on your back wondering what just hit you. I’m sort of used to this by now…that happens after living 53 years with a disease that is supposed to kill you. Nonetheless, each time it happens, I come away with a small life lesson. Today’s article will hopefully prevent someone from being as stupid as I was.
Here’s the thing: There is an attitude amongst the “normals” (by normals, I mean those that don’t have CF; not that this makes them normal in any way, but “wildtype” might not be understood by all) that what doesn’t kill you makes you stronger, and that you should just go out and overcome whatever tries to get you down. For example, I recently read this online somewhere (can’t remember where), “To put it simply: pushing yourself physically reveals what you are made of mentally.” I read it while I was in the hospital last week and here was my response that I jotted down at the time: “hahahahahaha, that’s vat you think, fatso.”
Sometimes pushing yourself physically reveals that you are make of hot air mentally.
What worries me is that this attitude is very common in CF circles these days. I read on FB all the time about people who are running with PICCs, doing hardcore exercise routines even though they are sick, trying to fight off CF by proving they can beat it. They know exercise is good for them, and don’t think that there is such a thing as too much exercise.
I get it, and I did this too. I still do this, apparently, which is why I have pneumonia now. But at some point, it doesn’t work anymore, and you actually have to do nothing but rest when you are sick. I know I sound like an old lady or mother or doctor or someone you don’t want to listen to, but let me tell you a story:
I trained for the Rock-n-Roll like I did the two previous times I’ve done a half. Shortish walks (up to an hour) during the week, and one long walk on the weekend that grew progressively longer as the race approached. I started in December, which was a good thing, as January never happened. So by mid-March, I was up to 10 miles for my long training walk. Then I caught a cold, and on the day I was to walk 10 miles, just three weeks before race-day, I had a fever and wisely chose to not train. This decision completely used up my allotment of wisdom though, because even though I was still not completely well, I chose to walk eight miles the next weekend. Coughing the entire two hours, I plodding along, never dreaming that simply walking could ever do much harm.
It first dawned on me that perhaps I had made a mistake when I literally had to lie on the floor for an hour after arriving home before I managed to get up and get water. That is how exhausted I was, after a mere 8 miles, when a previous 9.5 miles walk felt like nothing in comparison. Then I began to feel a bit chilled, and found a thermometer. This is when the reality of my stupidity hit me. Fever…productive cough…exhaustion. What could that mean?
The next day, the fever approached 103, and it was x-ray time, followed by hospital admission time. Pneumonia…both lungs this time, for good measure. ”Half-marathon, my ass,” the Universe said.
Maybe it’s my age, but I’m starting to think pushing oneself to exhaustion is almost never a good idea, even if you are healthy. Obviously, this becomes more important when you need your immune system to be fully on board at all times do do battle with chronic lung infections. There is a new(ish) thought in weight training that everyone seems to be writing about these days that I am finally going to try. The idea is to NEVER exhaust yourself, to always leave the gym feeling better than when you entered. The same idea can be applied to conditioning type training. Of course, you need to push hard enough to breathe deeply and frequently, and even to cough. But when it’s over, you shouldn’t have to take an hour to get up off of the floor.
I’ve already ranted here about a new Cystic Fibrosis Foundation (CFF) policy, infamously termed the “one person rule.” If you don’t want or have time to ready the previous post, here is the policy in a nutshell:
If you have CF and are attending an outdoor event sponsored by the CFF, you must stay 6 feet from another person with CF. How you are to know whether another has CF or not, I have no clue. Listen for coughs? Look at fingernails? Just ask everyone in your vicinity for their genotype? Sarcasm intended.
If you have CF and are attending an indoor event sponsored by the CFF, you had better have been invited by the sponsors, because only one person with CF can attend such a function. It doesn’t matter the size of the venue…convention hall or boardroom. ONE PERSON ONLY. Oh, and you have to be invited to be that one person.
I obviously have an opinion about this but I won’t go into it again. I am not the only one opposed to this new policy, however. Here is an excellent discussion of the matter in podcast form, between one of my CHEST article co-authors, Steve Shepherd, MPH, and one of the members of the CFF infection control committee, Dr. Manu Jain. If you are inclined to read journal articles, here is the complete CHEST point/counterpoint debate: Complete Point Counterpoint Chest April 2014.
Now then, at last I will come to the topic at hand. There are definite unintended consequences to this policy, AKA collateral damage. Not too much coverage is given to the psychological effects such policy will have on those of us with CF. I think it is important to consider such effects, and I would hazard to guess that these were not discussed much amongst the infection control committee members, only one of which actually had CF…alas, a former employee of the Foundation.
Just this weekend, it was made clear to me that my handling of “snack duty” for my son’s team was a concern to a mother of a child with CF who was also on the team. Snack duty. As in, putting Gatorade bottles into a cooler, along with whatever I buy at a grocery store or bagel shop. I certainly understand this mother not wanting me to drive her child in a carpool, which was also made clear to me (like I would ever do something so completely stupid), but…snacks? Really? Is it more likely that her son would catch a bug from a Gatorade bottle wrapper that I might have touched than if he drinks from a public water fountain? I am trying to put myself into her shoes, asking what I would do if my son was the one with CF. The thing is, I know that resistant bugs, dangerous to people with CF, are everywhere! They are in the ground, in your sinks, in houseplants, in air around construction sites, in medical clinics, in nursery homes, in hot tubs, swimming pools, dishwashers, drinking fountains, shower heads, they are EVERYWHERE! But instead of taking practical measures to minimize all of these risks, we are being told to fear each other…and people are freaking out. Case in point, snack duty.
The end result was that I indirectly assured this mother that of course I wouldn’t drive her son anywhere, and that I will have my sister do all of the foodstuff “touching” that must occur on my snack day. So I am a pariah. Again. This time, for a reason that I honestly think is complete over-reaction, and directly an effect of the infection control policies of the CFF.
This being a pariah isn’t new to me. I’ve been a prohibited from attending CF events for years now due to growing MRSA in my sputum (which I got from visiting my father in an assisted living center…NOT from another person with CF). MRSA is a very common problem for those of us with CF, as are several other multi-resistant bacterial “superbugs.” These bugs are everywhere, because of the overuse and abuse of antibiotics. Sadly, our lungs are like petri dishes from heaven for these infectious agents, and once they take hold, they are almost impossible to eradicate. Because of this, I can no longer physically attend research advisory board meetings (I take part by phone), give talks at CF education days, or go to the annual CFRI conference, which I used to love going to, not just for the information, but to meet and relate to others with my same CF issues. No longer can I coach kids in person the way I used to. In short, I’m not invited…because of the bacteria in my lungs. So I’m used to being that kind of pariah…not invited to be around people with CF. But it seems to have reached a whole new dimension now. Now, things that I have touched are uninvited…
I get it. Cross infection is a big deal. Nobody with CF wants resistant bacteria growing in their lungs. But what message are we sending children with CF? As a former kid with CF myself, I know firsthand that they already feel…different. They have coughs that turn heads. Their fingernails look odd. They have to take weird pills whenever they eat. They miss school more than their friends. Sometimes, they even have to go into the hospital…not to mention that they can search online anytime they want and learn their prognosis. So now let’s throw the idea out there that they really can’t be around others with their disease. Oh, and these “others” are really the only people in the world who know what they go through and understand their feelings about it. They could be contagious to others and their friends with CF could make them sicker. Will there come a time when they are asked to use their own special drinking fountain? Will their gym towels or team uniforms have to be laundered separately? Hell, will they even be allowed to be on the same team as another kid with CF? I wonder who’s going to pay for the psychotherapy?
But there are other more ominous unintended consequences. What we can all agree to is that the most dangerous place for a person with CF to be is in a CF clinic or hospital ward with other patients with CF. This is historically where infectious outbreaks have occurred (not in convention centers), along with CF camps of old, where kids with CF lived in close proximity and shared everything from respiratory equipment to food to tents, etc. The CFF has included numerous suggestions about how to minimize the risks in clinics and hospitals, and all are very good policies. Yet, I have heard from more than one person who is now afraid to go to their clinic because of the “one person rule.” And I can hardly blame them. So the policies that are intended to protect us are scaring us away from healthcare. Huh…maybe not so good.
Perhaps I am just thin-skinned (ha…that’s an understatement), and this shouldn’t bother me. But it continues to bother me, and events like the one over the weekend (I’ll call it “snackgate”) does nothing to quell my fears about how this new policy will cause others to act toward people with CF.
What say you, CF world?
I had what I thought was a brilliant idea that came to me in two parts this morning.
I’ve been having problems with motivating myself to write this blog. Now let me assure you right now that I don’t think for one minute that what I write is so important that I need to inundate you daily in order to make the world a better place. My motivation is much more selfish than that.
I like to write. I feel good after I’ve written something and hit publish (usually). It makes me happy to write. At this age, I feel like I should do what makes me happy, because…you never know, right? So I asked myself the same question I ask of my clients who want to start a new habit: What is the first baby step that I can take to make writing a habit?
Clearly, I have a platform here already made. Nobody reads it, but who cares? The easiest thing in the world would be to write a short post regularly…and by regularly I mean nearly daily when I am not traveling. Did you notice those two caveats that my subconscious mind slipped in there? “Nearly” and “when I’m not traveling…”
Ok, daily. Damn you, subconscious mind. Already trying to sabotage my plan…
I’ve made this promise before and not kept it. The write every day plan, I mean. But here is what I just figured out: I DON’T HAVE TO HIT PUBLISH!
That was epiphany number one.
Epiphany number two came when I thought about something I read yesterday about how to create the very good habit of flossing one’s teeth on daily basis. It is powerful in its simplicity: commit to flossing one tooth. Who can’t floss one tooth? Seriously…you just wrap the stuff tightly around your finger, cutting off all circulation, and stand in front of a mirror. Boom, you are done.
There is hidden magic in this technique, though. In a few days, I will bet a million dollars that I don’t have that you are flossing more than one tooth. In all likelihood, after a few weeks, all of your teeth are getting a daily scrubbing and your dentist and cardiologist are very happy with you.
Why does this happen? Because you set yourself up for success by making it so easy you cannot fail. There is no pressure. You are tricking your brain into getting over the mental inertia that presents the biggest obstacle to forming a habit. You go through the first few motions…going into the bathroom, getting out the floss, and beginning…without a thought. Then, while you are standing there, you just start to do more. Why not? It doesn’t hurt. It’s easy. It’s a good chance to daydream.
My epiphany number two was to create the easiest way possible to blog. As someone with CF, you all probably know the ritual that fills my morning: long periods of treatments, inhaling stuff, shaking with the Vest, inhaling more stuff, taking pills, eating high fat stuff, taking more pills, dealing with the consequences of eating high fat stuff that didn’t necessarily digest well….and then doing the normal morning things that everyone does. This takes time…a lot of it.
I usually entertain myself by getting drawn into the Black Hole of the Interwebs and hours pass by getting nothing of consequence done…other than “pulmonary toilette” as it is called in medspeak.
My “floss one tooth” idea is to write a short post while inhaling stuff. And by “short” I mean, write at least a one paragraph post while inhaling 7% hypertonic saline, which I do without fail every…single…day. Hence the name, “saline chronicles.” I tried to do this before, but I got all freaked out, thinking “how can I possibly have something good to write every day?” Enter epiphany number one, DON’T HIT PUBLISH.
So here it is. This time I will hit publish. I’m sorry. But I feel that perhaps this will provide the accountability I need. If both of you out there remind me occasionally about this idea, I will keep it up. Thanks. I am happy now.
A great soul has left our earth. As many of you know, I have quite a soft spot in my heart for Border Collies. Mo Ringel was (in my heart) second only to one—Cisco Desch—in the heated competition for best Border Collie ever.
Borders are more intelligent than humans. Any intelligent human knows this. Mo was so smart that she only let those who were in her pack touch her. Seriously. And even her pack members had to check the look in her eyes to confirm her permission for a simple pet. This was one smart dog. How many times have you been touched, physically or emotionally, by someone without your permission which resulted in a good outcome? Not many. Mo Ringel was (in my heart) second only to one—Cisco Desch—in the heated competition for best Border Collie ever.
The mantra at Mo’s house (and it was most definitely her house) was, “DON’T TOUCH THE DOG.” I only disobeyed this order once. That’s all it took. From that point on, Mo and I had an understanding…I could sit next to her, talk to her, coo coo her, and we were good. In fact, when I followed her rules, she even came to find me a few times. Others were not so lucky. I am almost ashamed to admit that on visits to Mo’s house, my own children seemed to think it a game to see who could touch Mo first without getting bit. This only worked on the boat, when Mo was so busy biting the wake that she didn’t notice the surreptitious pokes by my deviant boys.
And this brings me to the greatest dog owning family ever…the Ringels. How many people do you think would keep a dog, in fact, shower said dog with love and lake trips and raft rides and golf ball chases after numerous veterinarians tried to convince them to put Mo “down” due to her somewhat unusual social skills. When just to have Mo checked out a a vet meant cajoling her into the car (without touching her, of course), and then forking over the cash for general anesthesia for a simple check up, or shot, or whatever? This was true love, and it went in all directions in that family.
Fourteen years of love. You can’t beat that. Now Mo and Cisco are frolicking somewhere in a parallel universe. I just hope Cisco doesn’t touch her. RIP Mo Ringel.
Thirty years ago, I began the process of leaving my family behind, as acceptance letters to medical schools far away from my home state of Nebraska began to arrive in my mailbox. Those remaining in NE at the time included my parents and my sister, Kathy, who was dying of cystic fibrosis. My five other siblings were scattered far and wide, but my closest friends remained.
Kathy was the center of my life then, although I don’t think she knew it. In her, I saw my future, but somehow was able to keep this fact at a distance and think of it only as her disease and her death. I loved her to pieces, but I was also afraid of her…afraid to get too close and not be able to escape the reality of the horrible disease that I, too, would some day die from.
In the spring of the last year of her life, I visited her in the hospital to discuss the options that were opening up to me. She told me I needed to leave…to go to a medical school where I could do research in CF. To get out of Nebraska and find my own life.
Now I know that she was trying to spare me the sight of her withering body, her rapid decline, the horrible depression that she lived with as her body defied her will at every turn. I decided to go, accepting the offer to Stanford Medical School, and packed to leave for Palo Alto. The lyrics of a popular song back then, Old and Wise, by Alan Parsons Project, rang in my ears as I left in my Buick Skylark with my husband and dog:
As far as my eyes can see
There are shadows approaching me
And to those I left behind
I wanted you to know
You’ve always shared my deepest thoughts
You follow where I go
Shadows were approaching me, but at twenty-three years old, I barely acknowledged them. Yet Kathy’s were closer…much closer, as I abandoned her to manage them on her own. But I held her with me, and after only a few months of getting used to California, before classes even started, I returned to Nebraska to be with Kathy as she died. At thirty-one-years of age, her life was taken. At her funeral, my brother Tom, who also had CF, and I could only hold hands and understand each other in a way that the other siblings couldn’t. Our shadows were approaching.
Inexplicably, I made it past thirty-one…way past. I have lived entire lifetimes, as a picture perfect picket-fence marriage ended, followed by a less than perfect eight-year relationship which resulted in the two best things that have ever occurred, my two sons. Finally, at forty, I found my true life partner, and a crazy life of boys, dogs, and a two home relationship ensued.
And then, when I was forty-eight, Tom died. If Kathy was like a mother to me when I was young (she was), then Tom was like a caring, nurturing father. They looked after me as a kid the way my parents couldn’t. They understood me. We were the sick ones.
Now, I was the last one standing. The shadows were getting closer. The sadness was overpowering.
And oh when I’m old and wise
Bitter words mean little to me
Autumn winds will blow right through me
And someday in the mist of time
When they asked me if I knew you
I’d smile and say you were a friend of mine
And the sadness would be lifted from my eyes
Oh when I’m old and wise
I don’t know when I am considered old and wise. I’m certainly old. In CF years, I’m ancient. I do smile as I think of Kathy and Tom. It is a sad smile, of course. Their lives were stolen. They didn’t get three entire lifetimes with kids and dogs and good drugs to keep infections at bay. They didn’t live long enough to be guinea pig subjects of new medications that fix the protein that malfunctions in CF. It doesn’t seem possible for that sadness to be lifted from my eyes.
As far as my eyes can see
There are shadows surrounding me
And to those I leave behind
I want you all to know
You’ve always shared my darkest hours
I’ll miss you when I go
My body is not quite as functional at age fifty-three as it was thirty years ago when I held Kathy as she took her last breaths. My own shadows are getting closer. Antibiotics don’t work as well. Organs are getting tired of toxins. I have been given so much more than I deserve. When I think of Kathy and Tom, I feel so incredibly grateful. First, to have had them as role models and caretakers. But additionally, I have been able to enjoy years and years of family and friends. From old friends (AKA frieds) from way back in high school to California friends who have been with me from day one of knowing me, caring when I’m sick, helping when they can. I’ve been able to watch my sons morph into young men, something I never dreamed would happen when I was young. And even though two are gone, I have four remaining siblings who call and worry about me. I have a partner who is willing to live with me to the end…not an easy task, let me assure. I am so fortunate. I don’t get it.
And oh, when I’m old and wise
Heavy words that tossed and blew me
Like autumn winds will blow right through me
And someday in the mist of time
When they ask you if you knew me
Remember that you were a friend of mine
As the final curtain falls before my eyes
Oh when I’m old and wise
The final curtain will fall, of course. It has now fallen for both of my parents. I hope that when it happens, in the mist of time, I will finally be able to call myself wise. And I hope you will know that you were all my friends.
As far as my eyes can see