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!
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.