Wow, it has been so long since I’ve written anything! There are several reasons actually, but the biggest one is that I am falling apart.
Not in a bad CF kind of way. Actually, since withdrawing from the trial of the miracle combo drugs (not a miracle for me), I have felt remarkably well…at least as far as my lungs are concerned. So that’s good. I think my lung function is back to baseline for me. I would actually know that today had I not had to reschedule my clinic visit because I can’t move. But that’s another story.
When I say I’m “falling apart,” I’m referring to basic body biomechanics.
The problem for me is that when I feel good, I act like a crazy person and overdo almost everything that I attempt. I got away with this habit in my twenties and thirties. And you would think that the sudden absence of this ability in my forties would have affected my decision making processes. But that is entirely too reasonable.
Alas, I am still “learning” about aging in my fifties. The first little blip in my happiness about being out of the hospital for a sustained amount of time occurred a couple of months ago, when I felt so good jogging that I foolishly thought it would be a good idea to try some short sprints. This doesn’t sound stupid, but I didn’t have on my running shoes. I had new “minimal” trainers on when I decided to try short jogging intervals, just to see what it felt like. It felt great! So jogging intervals turned into sprint intervals, and two or three jog/walks to test them out turned into ten sprint/walks.
If you run, you probably know what happened. The next morning I had searing, and I mean searing pain upon putting weight on my left foot. Plantar fasciitis. The bane of any runner’s existence. I’ve had this before (in my twenties) when it lasted for months…only to go away after I purchased several hundred dollars worth of orthotics and wore them in every shoe for weeks. I also took massive doses of NSAID’s (oh the joys of youth) and iced and stretched like a fiend. Eventually, it went away, but it took forever.
So, running was out. Actually, even walking was out, much to the chagrin of the boys, who suddenly had extensive dog walking duties. But ever the optimist, after a few days of pouting, I thought, “No problem. I can do kettlebell training for my conditioning!” Kettlebell complexes, I’m almost positive, can be just as effective at inhibiting my epithelial ENAC channels as running. This is why running works in CF (I think). Besides the obvious jarring and increased breathing that makes one…ahem…”clear” one’s lungs, it also inhibits a sodium channel that works overtime in CF and contributes to the dryness of the airways. Normal CFTR inhibits ENAC, but mutant CFTR (ours) lets it run amuk, and this is bad.
So, kettlebell complexes it was. That is…until I couldn’t lift my right arm above my head anymore.
This little issue had started to rear its ugly head in January, during 2014 Pneumonia #1, (I should call it Vertex Pneumonia #1, but I’m being nice). I had to take oral Levoquin after hospital discharge, and it left me with a touch of shoulder tendonitis. The shoulder pain was minor at the time, and mostly stayed that way, since the sudden arrival of Pneumonia #2 and Pneumonia #3 kept my right arm immobilized with PICC lines.
But with the foot problem, I attacked my kettlebells with a zeal I hadn’t approached since my RKC training three years ago. Cleans and presses, swings and snatches, Turkish get-ups before every workout. I was a maniac, certain that Pneumonia #4 would be upon me if I didn’t suck serious air with every workout.
That’s when my right arm decided that it was not going to rise above my head, or around my back, or go anywhere, really, other than beside my right hip forever more. After a steroid injection did nada, an MRI showed supraspinatous tendonopathy and a superior labrum tear. Yikes. Option one: try another shot of steroid. Option two: surgical consult. I’ll take shots with extremely long needles into my shoulder joint any day.
So that happened, and I’m not doing much with kettlebells.
My next brilliant idea was to do the Stronglifts program. My thinking was that if I couldn’t run, and couldn’t swing or snatch or press KB’s, I would lift HEAVY weights three times a week and try to make it a “conditioning” workout by using short rest periods. Not really a bad idea…if you are young and don’t already have a bulging disk between L5 and S1.
This program emphasizes squats…you squat every workout, and you increase your weight every workout until you can’t do five sets of five repetitions…then you keep increasing, but more slowly as you are able.
You would think that an educated person such as myself would not undertake such a program given my history, but hey, my back hadn’t been hurting in at least six months, so I was sure I’d be ok. Besides, I was doing front squats instead of back squats. Surely, that would make a huge difference.
And I was hanging in there…until I hit the 105 lb day. I weigh 105 (ish) so my goal was to get to this weight and be able to do the 5×5 workout without missing a rep. I had tried it for two workouts before and hadn’t been able to do it, so this was my third attempt.
Later, when I was lying on my back under the squat rack, wondering how I was going to get up and if anyone around me had heard my scream, I realized that maybe this was not a goal that a 53 (almost 54) year old woman with a previous back injury should have. I’m afraid to even know what happened to the disk. All I know is that it hurts to sit, or to walk, or to bend over the slightest amount.
What is a girl with CF to do? I would swim if I could move my arm. Without that, I’m pretty sure I will drown. I would walk fast, uphill, if I could stand up, and oh yeah, if my foot would heal. I can’t even think about a kettlebell right now, or any other heavy object, without psychic pain.
A normal person would stop exercising, right? I gotta go now. I’m off to the gym. Certainly there is something there that I can do!
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.
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
These are the last words I will utter about the month referred to above. After this, I shall erase this time from my memory and speak of it no more.
I should have known. It had been nineteen months since my last confession, I mean, hospitalization due to complications of cystic fibrosis. This may or may not have been due to the fact that I might have been enrolled in a research study involving a now famous potentiator in combination with an up and coming corrector of my f’ed up CFTR protein. I cannot confirm nor deny that I have been a research subject for a large amount of those nineteen months. I have been sworn to secrecy by the research Gods who don’t want study subjects blabbering all over social media about their experiences. So maybe I’ve been in a study, maybe not. I could tell you, but then I would have to kill all of you, which would be hard and very illegal.
It had become a frequent topic of conversation in our house. “Mom, it’s been so long since you’ve had pneumonia! What’s up with that?” To which I would respond, “I know…where is some wood to knock on?” My IV pole gathered dust, and I actually ran out of the thousands of little plastic bags that IV drugs are packaged in, which I had been collecting over the years.
When I passed the 12 month mark, I started to get a bit overconfident, I now admit. I hadn’t gone for over a year in years! It seemed that every 4-6 months prior, I would get slammed with the two-by-four named cystic fibrosis, and end up in the hospital, followed by home IV’s, followed by a short(ish) period of feeling sorry for myself, and then start all over again to become fit and healthy. It was a dance that I had down pat.
So, when my throat was a bit sore for a couple of days, I said it was the heater. And when I started to cough more than usual and felt tight, I decided it must be time to switch inhaled antibiotics…the colistin was getting to me. It took the fever to knock some sense into me. “Oh yeah, Julie…you do have this small underlying issue. Perhaps if it looks like a duck, it might be a duck?” What a great diagnostician I am.
So exactly one week from a 45 minute jog/walk, I am calling my doctor to tell him I need an x-ray. First, let’s talk about that 45 minutes. You probably don’t get this unless you, too, have this stupid, f’ing, ridiculous disease. In my twenties, a 45 minute jog was no biggie, Yes, it took longer for me than most to work up to this, but my lungs weren’t that bad and I ran frequently. In my thirties, I could still jog continuously for 45 minutes, presuming I had been diligently training for months. In my forties, not a chance. I had to switch to the jog/walk side of the street. And it was a chore. I did it…because I knew it was keeping me alive. But it almost always sucked, and was only worth it when it was over. To be clear, I am now 53. A forty-five minute jog/walk meant I was the fittest (endurance-wise) that I could be. I’m not kidding myself, these lungs aren’t ever again going to do much better than that.
Back to the phone call. From being at the top of my game one week prior, I had been slammed out of the blue by the railroad tie named cystic fibrosis. In a literal heap of piss-poor-protoplasm, I held on to my phone, listening unbelievingly to the message on my doctor’s line, “I will be out of town and away from the office until….” forever from then. I needed an x-ray. The fever was now accompanied by an elephant sitting on my right chest wall, poking a sizzling hot tire iron into my ribs with every inhalation.
Ok, I thought. This is why God made cell phones. Fortunately, he answered (my doctor, not God) and ordered the needed test. Of course, I didn’t really need an x-ray. I knew exactly what it would show. I was screwed. Not just because of the pneumonia, but because my guy was out of town. This meant an ER visit, followed by treatment by people who don’t know me or my CF. Never a good combination and to be avoided at all cost.
So I did what any sane person who had a partner who worked at another hospital would do. I packed my bags, my Vest, and my dogs and drove an hour north to be admitted at Barb’s hospital in Marin. At least they know me, and I am treated extremely well. It helps to have friends in high places. Plus I’m pretty sure Barb would not allow them to let me die. I landed in solitary confinement, with all visitors required to gown, glove and mask before entering. Flu? Who knew? MRSA…absolutely…droplet and contact precautions in place.
The dance commenced. In went the PICC. Drip drip drip went the triple antibiotics. The dilaudid was supplied as requested (thank you). Into the room came the meals, out of the room they left, untouched. The Boost supplement pile grew. The showerless days passed. The colon moved nary a muscle. The fevers remitted. The cough morphed from dry and painful to loose and rattley. The form that looked back at me from the tiny mirror above the sink grew smaller and smaller. I managed a walk around the ward. Then another outside to the circle in front of the hospital. I couldn’t believe how weak I was and how those 30 or so steps did me in. 45 minutes, my ass. Finally, the home IV “lesson” was given (I still laugh as I remember this…I’m sorry but I have a PhD in this stuff by now), and it was discharge day.
But this is where things got weird. Normally, after a week or so of IV’s, I’m feeling pretty good and anxious to pull the PICC. Yes, I do it myself. Not this time. I couldn’t eat. I couldn’t sleep. The antibiotics were killing me. One of them, levofloxacin, was causing every tendon in my shoulders, hands and knees to ache and feel as though they could rupture at any moment. The other two were trashing my kidneys. Like any legitimate doctor-patient, I decided I should refresh my memory about the signs of uremia (kidney failure). I read on Dr Google about a new fun fact that I never learned in medical school. There is something called “uremic frost” which occurs on the skin of people who are in florid renal failure. Oddly, it looks EXACTLY like my skin looks after a good hard sweat. And of course, I was sweating a fair amount. So I was pretty certain I was going to need a kidney transplant before a lung transplant…a first in the CF literature, I was certain.
Days went by. Friends brought food (thank you, you know who you are). I couldn’t really eat it. The scale dipped to 100 pounds. This is when I freaked out. Tears came. Swear words were frequent. What the hell was wrong? Why couldn’t I eat? Why was I disappearing? Why did I hurt absolutely everywhere? Where was a single molecule of ATP? I had none.
Finally, I decided that I couldn’t take the antibiotics anymore. A ten day course was all I could take this time. Sure, I’m normally supposed to do at least two weeks, sometimes three. I would have to take my chances and hope 10 days was enough. Never before had the collateral damage of antibiotics been worse than the infection itself. This was a whole new world. I think perhaps it is a product of years of antibiotic use multiplied by years of age.
But even stopping the antibiotics didn’t do the trick. I still abhorred the idea of food. I just wanted to sleep. Then, the fever came back. I kid you not. My heart fell into my slippers when I saw it was 100.1. I was frantic. I swear I took my temp at least once every 5 minutes, wondering what the hell I was going to do if it grew any higher. Back to the ER? Barb was out of town. Then the chest pain came back and I knew. I wasn’t just screwed, I was royally screwed. I even told the kids that night that I was probably going to have to go into the ER the next morning. It was a Saturday night. The boys could go to “other mom” but what was I going to do with the dogs? What antibiotics could they even use this time? I had pretty much been through them all. These were the thoughts rolling around in my brain that sleepless night.
Then…I woke up to no pain and no fever. Not quite believing it, I continued my obsessive temperature taking throughout the day. Nothing. The next day…the same. I went for a walk. It was short, and veeeeery slow. Then I realized that I was slightly hungry. Wow…that was a strange feeling. I ate a bowl of soup. Then another. What was that fever and pain? Who knows. A bit of atelectasis maybe? The Universe messing with me? I’ll never know, but that last week was a whole new dance step.
Fast forward to today, the last day of the worst month in a very long time. I’ve gained back half of the weight. I walked an hour today. This, too, passed. Now I’m well into the very well rehearsed last part of the dance…getting back to that 45 minutes. The last memory I have is of New Year’s Eve.
Since the previous post was a bit more serious and sarcastic than I normally get, I need to lighten things up a bit. Laughter is, after all, the best medicine.
I wrote the below post almost 31/2 years ago (wow, time flies), and it occurs to me now that it most definitely should be updated. So I’ll post my thoughts from 2010, at a ripe old age of 49, first and then add my more recent musings and additions with red ink. I hope you enjoy:
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.
You know those people who say, “Oh don’t worry dear, those hot flashes won’t last long.” They are wrong. Dead wrong.
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.
Still working on this…
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.
I still haven’t nail this down completely, but I believe I have figured out the pill issue. Each morning I poor every single pill and supplement that I must take throughout the day on the kitchen counter. If, at bedtime, there are remaining pills that I cannot identify, I use them as dog treats.
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.
D-day on this one is in 12 1/2 years, and now I actually have faced the fact that I will probably be a bag lady. The good news is that, for some odd reason, I already have the grocery cart. Don’t ask. Only my son knows for sure why we have one in the back yard.
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?
Hey, I am so good at this now that I can do it while vesting! This must be an example of Malcolm Gladwell’s 10,000 hours to mastery.
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….
I have a new game I play with this. I now have a “floater” in my left eye due to “peripheral viscous detachment” according to my eye doctor. It looks like a little hair with arms, one of which is holding a football (I have spent some time examining this). I see it when I close my eyes if I’m facing bright light and it moves when I move my eyeball. So now, for kicks, I play the “make the hair dance to the ringing” game when I’m bored. I’m going to create an app.
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?
I’m still up on gravity, but barely. Nuff said.
8) Getting too “old” to run (read: low back and knee pains): I thought the lungs were supposed to go first.
This is what actually inspired the update to this post. Now I have an L5-S1 disk that is wandering around where it doesn’t belong, the result being nasty back pain. I didn’t really understand back pain before this. It’s amazing how it can bring one to one’s knees…literally. I now kneel down to cough. This draws some interesting reactions from others, I’ve noticed. This is especially true when I’m out shopping or walking the dog(s). Of course the dogs think it’s a game. Oh…I’m rambling now.
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.
Sadly, Cisco died two months after I originally wrote this. Now, I still make the noises and I know he’s hearing me from somewhere, smiling his Border Collie smile, waiting for me to hurry up and get there so I can throw him the frisbee.
10) Wondering if I might outlive yet another dog: I don’t know which to wish for.
Now Cookie is almost 12, and Wiley is 10. Both of them act like they are 3 when they see a cat, so I’m not worried yet. The others (yes there are more) are 9, 7 and 3. It is a lively barnyard and nobody is leaving it soon, including yours truly.
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?
Let me tell you a little secret: The tops of your FEET can get wrinkles!
12) Needing a screening colonoscopy: Of course, if we wait long enough (see 7 above), we can probably just examine it directly:-)
Well, that happened. No, no, not THAT. I really don’t understand why they bother to make “lemon flavored” GoLytely. Like that could possible make it a pleasant experience?
And now for some brand new 2013 additions:
13) Teaching my son to drive. How can this be? He was just born.
14) This memory thing is getting to be annoying. After packing half the house for a three day weekend trip (most of it medical equipment), I just realized that I forgot to pack nebulizer cups. Kind of hard to do one’s treatment without those, don’t you think? Stupid people tricks like this are becoming more and more frequent.
15) Where did my ability to sleep anywhere, at any time go? I now resemble previous partners who were bothered to the point of insomnia by such little things as ticking watches, dripping faucets at the neighbors’ house, dog lip smacking. I could never understand this before. Now I get it. Electrons spinning piss me off.
16) Receiving invitations to join the AARP on a near weekly basis. This just blows my mind.
17) Having doctors that are literally half my age. This would be kind of cute, if they were Doogie Howser types, but they are not. I am old.
19) Living to see (and take part in) clinical trials of the first of probably a long line of drugs that will work together to correct the basic defect in cystic fibrosis. I really didn’t think I’d see this. But I am living it. Every day, I swallow these miracle pills morning and night, and I think of my sister, Kathy, and my brother, Tom, both stolen from this earth way too early by a horrible disease against which they didn’t have a fighting chance. I think about how lucky I am to have made it this far, and what they would want me to say and do on their behalf.
Here’s what I think they’d say: Yes, luck has something to do with it. For all of you out there who are really, really sick even though you have done everything in your power to stay healthy, don’t blame yourself. Blame this fu&%ing disease, and try as hard as you can to hang in there for a few more years. These meds might just stabilize you and allow you many more years than you think possible. But for those of you who are slacking–who don’t exercise or sleep enough or take ALL of your treatments or prescribed meds–don’t blame bad luck and sit around feeling sorry for yourselves. Victory is just around the corner and THIS IS NO TIME TO BE A SLOUCH.
Note to reader: Neither Kathy nor Tom would have yelled at you while living, however it appears that they have become quite adamant in the afterlife.