It was a little over a month ago that I lay on my weight bench in the garage with tears of frustration streaming down my face. I had just completed a 15 minute “workout” consisting of a few unweighted lunges, some hip bridges, and 3 sets of 5 reverse abdominal curls. This was all I could do, since I still had a PICC line in my arm and couldn’t chance any upper body work (I’ve learned that important life lesson). As it turned out, the 3 exercises I chose were clearly enough, as my heart rate after the last rep was about 300 bpm and I felt like if I rolled off the bench right then, I might have to call my son in to help me up.
I was a mess.
I suppose I had a good reason for the tears. This was the third bout of pneumonia in just four months, and I was sick and tired of being sick and tired. It was also my first attempt at any form of exercise other than easy walking in well over a month, and my physical fragility was frightening. Normally when I exercise, I am a bit of a taskmaster. I push myself pretty hard and usually do more than I set out to do. But today was different. I was a complete wimp.
I was nearly at the end of my course of antibiotics and the PICC was coming out in two days. This meant that I had been receiving medications to eradicate lung infections for four of the the last five weeks. That is a lot of antibiotics. There was likely not a viable bacterium to be found in my body. Indeed, my cough was gone, the pain of pleural inflammation was gone, and I could actually eat again. But, where was my mojo? I still felt like crap, and this was the kicker. Normally, at the end of a course of IV’s, I am raring to go, having planned my fitness regimen for the next three months. This time was different, and I was worried.
Of course, my partner reminded me that I would get better…that I always did…and that I needed to be patient. My rational mind knew this, but my emotional self kept whispering, “What if this is it? The beginning of the end? Your 53 year good luck streak has to end sometime…”. I hate that voice.
So, ten pounds of muscle mass down (which was obvious as I watched my legs trembling as I got up from the bench), I vowed to give my secret weapon the old college try and to stop listening to emotional self until the end of the trial. Antibiotics are needed, as are pulmonary clearance and airway treatments. Sleep is king, and hydration and good caloric intake does wonders. But, the best medicine of all, at least in my experience, is daily exercise. It makes me breathe deeper. It gets me outside. It makes me cough up junk. It builds an appetite. It makes me, ahem….regular. But most of all, it feeds my soul.
So, tears now dried, I developed my plan. It was a modified version of my plans of the past…much easier…much slower progressing.
Walking is always the foundation of my recovery, and will be until the day I can’t walk anymore. But walking further than I should due to training for a half-marathon when sick was what landed me in the hospital with pneumonia number two, so I had to be cautious. I decided to cut in half the time I thought I should be able to walk, and add just a few weight training exercises only three days/week. These were front squats, kettlebell swings (only 10 at a time), and Turkish get-ups with a very light kettlebell. That’s it. I wanted to do more, but my shoulder was messed up (thanks to levoquin), and I had to be careful not to rupture a tendon.
So that’s what I did. Over time, my walks became walk/jogs, and my two kettlebell exercises proved to work magic, as I knew they would. Today, I’m doing swing intervals as easily as I was before the s&#t hit the fan back in January. My shoulder is getting stronger and I’m able to press again. I can breathe. I’m not coughing. I’ve gained back 6 pounds.
Yes, the antibiotics did wonders. Thank God (and Barb) I have insurance and great medical care! But there is no doubt in my mind that what converted me from that trembling, weak mess lying on my bench last month to today, looking forward to my get-ups and KB presses, is exercise. Exercise is medicine. Very slowly but surely, it works to build up strength and endurance, to improve appetite and thus enable weight gain, and to bring me out of the doldrums to enjoying my fantastically fortunate life.
I have a pet peeve. It is the word “compliance.”
This word is thrown around quite a bit in CF circles, especially among medical professionals. It is used frequently in research papers, where there is an understanding of what it means. Physicians and other researchers are very concerned that people with CF don’t always do everything that they are told to do to keep their disease and all of its various manifestations at bay. If someone fails to do all required treatments or take all medications or exercise daily, they are coined “non-compliant.” Did I say that I hate that word?
Just do me a favor and check out your friendly thesaurus to find other words that mean the same thing. Never mind, I’ll help you out. Here are a few: docile, easy, manageable, meek, submissive, yielding. In other words, spineless, with no worthwhile opinion on the matter. Now in the olden days, when Doctors were GOD (which is why I capitalized doctor), it was just assumed that one followed one’s doctor’s orders, no questions asked. But times have changed, and if you don’t believe me, turn on your TV and count how many different pharmaceuticals tell you, the patient, to “ask your doctor if this could be right for you.” Like it or not, patients are a very important part of the equation now. This is a good thing (not the television commercial part…that is a very crazy and ridiculous thing).
I’m not harping on CF doctors. I actually think most realize that the patient has very important information, like how much it is really possible for them to do in a given 24 hour period. So why can’t we drop the word?
I have an alternative. How about instead of the word compliance, we use “consistent.” How consistent someone is with their thrice daily aerosols, or 250 pills to swallow, or blood glucose monitoring, or airway clearance technique of choice, or exercise, or any of the myriad other things we must do daily, sounds SO much better than “compliant.” There is no judgement in the word consistent. It implies that we are all trying hard, but sometimes life gets in the way. Check out some of the synonyms of my substitute word: dependable, persistent, rational, steady, true, regular. I like dependable and steady so much more than meek and submissive, don’t you?
What say you, CF peeps?
So far, 2014 has not been my favorite year. Three hospitalizations in four months is a personal record that I do not want to break. But, the good news is that I have learned quite a bit about “comebacks.”
I am writing this as I walk on a treadmill, sucking on a nebulizer which is providing hypertonic saline to my recovering respiratory mucosa. I have to stop frequently to cough of course…that is the point, after all. But it has dawned on me that this act is a win. It’s a small win, but a win, nonetheless. For the last month, my treadmill has been motionless, as I’ve either done my treatments from a hospital bed, or from my bed, or from the recliner in the living room. Simultaneous walking was out of the question.
This is big! I will celebrate by going to go to the gym today for the first time since mid-March (I cringe as I think of the monthly fee). Even though I am forced to be extremely cautious with lifting due to the effects of ciprofloxacin on my poor shoulders, this will be a huge step in the positive direction. The energy of that place feeds my soul in a way that is hard to describe. The gym is my happy place, and I have missed her dearly. God knows, my shriveled muscle fibers need to be awakened so that I can gain back my lost weight.
I’ve discovered that one small win a day keeps the frustration at bay (that could be a bumper sticker). CF is frustrating. Any illusion of control is busted at any time, with no warning. This wears on my psyche. It taxes my patience. It drives my worrying, monkey mind crazy. There is no way to stop the relentless progression of this disease. All I can do is my best to slow it down.
Indeed, the only way to win is to find small victories…every day. Some are much smaller than others. Some are so small that I long for my old microscope to find them. But they are there. A friend flying all the way from Texas to spend time with me and try to help me out. A funny thing that my son says. A dog licking my foot. A quiet weekend with my partner. A walk, even if I can only go 10 minutes, is after all, a win over a hospital bed.
They add up, the small wins. I’ll be back to my normal Julie eventually. Or, maybe I’ll just be a new Julie, still winning. Because I won’t let CF beat me. As long as I am in charge of the battle, I win.
I worry too much. Perhaps a reasonable person would say I have a right to do so, but nonetheless, it is pointless and it pisses me off. It probably comes with the territory of being an “old CF survivor,” as I have been called. Fifty-three is not exactly “old” in wild-type years, but for a cystic (man, I hate that term) with my original lungs in place, it is ancient. Being a worrier could actually be an adaptive train. I don’t know. I know that when I catch a cold or the flu, I have an exceptionally high chance of landing in an ER, so I worry about being around sick people. When I look at my heart rate monitor and it registers 135, even though I’m barely moving and my dog is clearly doing all of the work as she drags us around the streets of Palo Alto, I know something is very wrong, and I worry. Could I be dehydrated? Anemic? Am I getting sick again? Crap. Who’s going to take care of the dogs this time? Before I know it, in my mind I am lying on a gurney and CF is winning.
I can’t count the number of times that I have wished I didn’t understand medicine. Oh, to be a retired carpenter, or chef, or lawyer! Why do I have to know everything bad that could be happening inside of me? It all started in medical school, when I started acquiring all possible disease states. I’m not alone in this malady; I think it probably happens to every budding doctor. But I took it to extremes. I was surprisingly CF symptom-free back in those days…other than GI problems which I will not go into…you’re welcome. But this didn’t stop me from imagining horrible afflictions. Having the subject of pathology as my all-time favorite course, it shouldn’t be surprising that I self-diagnosed almost every type of malignancy, barring testicular carcinomea. In fact, by the end of medical school, I had honed down every one of my many symptoms to be a form of brain cancer. It really is true…brain cancer could be the answer to any problem. It’s kind of like Kevin Bacon and the seven degrees of separation. Kind of.
Anyway, according to a recent CT scan taken to rule out a pulmonary embolism because the last freaking pneumonia hurt so much, I now get to worry about having lung cancer for three months. The CT showed multifocal pneumonia and mucus plugging (duh…I’m 53 with CF and I was sick), but the radiologist just HAD to mention that he or she “could not rule out” malignancy. ( This is totally Karma coming to bite me in the ass. If you knew how many times I have used that phrase in my path reports…). So he/she suggested a repeat scan in three months and now I get to worry. More.
The last straw happened last night, as I was enjoying the downward dog pose for the first time in over a month (PICC lines and yoga don’t mix). I noticed a very dark splotch (technical term) on the bottom of my foot. It was new, irregular in color and shape, and was in a prognostically horrendous location for a melanotic lesion…the sole of my foot. This little factoid kept ringing in my mind…”Oh God, Julie…a new pigmented spot on the sole? You are so dead.”
I rushed to find my reading glasses, because without them it looked vaguely like a tick…yes, that black…but was flat. With my glasses and under the light, my fears were confirmed. It was no tick. It looked exactly like an acral melanoma. My stomach turned and the oxygen left the room. What a way to die! Wait, CF was supposed to kill me! This was outrageous! I needed to go to the dermatologist NOW. I wondered if they had a night clinic? Ok, deep breath…at least it’s flat. Maybe it hasn’t metastasized yet. BUT NO WAY, I then remembered that acral lesions can be flat and be very bad actors. Panic truly began to ensue.
This is what happens to me. I need to cut my head off. Instead, I had the rather brilliant idea that perhaps I should see if it was dirt. So I wetted a paper towel and began to scrub. Three seconds later, my melanoma was cured.
I realize that this post does not belong on a blog titled “Sick And Happy.” It should just be called “Sick.” However, I don’t really want to start a new blog. It would just be something else to worry about.
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.