If you've been following this blog at all lately, you've probably caught on by now that I am slightly obsessed with gyrotonics. Okay, maybe make that "not-so-slightly", because let's face it, I find that if you're going to obsess, you might as well take it all the way. And all the way for me lately has meant 3 sessions a week, for an hour each time, with a private trainer. I love the excuse this gives me to get out of the house even when I don't feel awesome. I love the cozy feel of the studio -- all warm and lovely and filled with people moving and flexing and playing on the towers or the jumping board or the mats on the floor. I love the movements, and the empowerment, and the fact that I can actually feel myself getting stronger and more flexible from week to week. I love all of it.
Except, of course, for the stretching.
Let me explain: each gyrotonics session begins and ends with some stretches and movements designed to open up your body and warm your muscles. Sounds pretty standard, right? Yeah, I thought so too, until I experienced it for myself. I swear sometimes it feels as though the world's gyrotonics instructors huddled together in some dark room one night and hatched a plot to torture unsuspecting fools like me through the use of roller balls and resistance bands. And sure, I know somewhere deep down in my heart of hearts that this is (*gasp*) good for my body, but in the moment it tends to feel more like one of those "enhanced interrogation techniques" we've all read about in the news. Seriously, I'd sing like a canary if it meant that I never again had to endure the pain involved in "rolling out" my thighs.
I distinctly remember one session early on in my gyro career when I was literally gasping in pain by the final stretching period. My instructor was carefully guiding my movements, ensuring that I wouldn't overextend and hurt myself, but also pushing me to break through that wall of comfort, basically forcing me to ask my muscles to go a little further, and open just a little more than what felt easy. And the result was pain. Pure, unadulterated, evil pain. So I lay there, on my back with one leg extended skyward, my muscles shaking with effort and my body clenched against the suffering, when my instructor looked down at me and smiled. I thought for sure she was going to release me and let me go slink off into a corner to lick my wounds, because she could obviously see that I was in distress, but she didn't. Instead she just looked at me calmly for a second and said simply "you need to go there," as she guided my leg into an even more excruciating stretch. Just five little words to tell me how much my body needed this, and I believed her. Kind of.
So needless to say my general attitude since then has been to go to gyro, get through the first part, really enjoy the main bulk of the hour, and then endure the painful stretching and opening at the end with resolute and resigned silence. That's what "you need to go there" meant for me, after all: do and get through it, and who cares if you enjoy the process, right?
Well, maybe. The other day, as I was slipping out of my shoes and coat, I took a second to wonder why I was dreading this stretching part so much. And immediately the words "you need to go there" popped back into my mind, because, to be honest, they never really left it in the first place. So there I was, coat half off and contemplating what it means for the body to really "need" something, and then, all of the sudden and without really meaning to, I made a personal decision that the stretching for that day simply would not hurt. My decision was based on the logic that if my body needed to stretch, then doing so was not harmful; in fact, quite the opposite. Pain is the body's way of telling you when you are doing something wrong, like sticking your hand into a fire, for example. Holding your hand in a flame is supposed to be hard -- your body makes it hard on purpose -- because it isn't a particularly good thing to do. Stretching, on the other hand, is good for you. Exercise is good for you. There may be sensations that accompany these actions, but those sensations aren't really pain: they are the feelings of muscle growing, or opening out to greater flexibility, or connecting with other muscles to form a stronger, more balanced movement. I wasn't sure changing the label would change the experience, but I was bound and determined to try.
So are you ready for a miracle?
Well, don't be. I've had three sessions since that day and the stretching still isn't easy or comfortable, necessarily. But it honestly isn't painful somehow. On the first day I tried out my new perspective, I noticed that I was breathing into the stretches more deeply, accepting on some level that these were good and that I really did "need to go there." I don't dread these parts of the session anymore either, in fact I find that I kind of like them in a weird way because I see them as a vital part of the workout -- not just something to get through and get over with. It's not so much that anything about the stretches themselves has changed; it's just that I'm opening my mind now instead of just my muscles and joints. And that seems to be making a difference on some level.
I ended my session today with the same stretches I used to hate, and found that I barely broke stride or focus going into the movements that just a week or so ago had me gritting my teeth and clenching my fists. I concentrated on my breathing, exhaling into the motions, and just let it be . . . well, not easy, but maybe "right" is the word I'm looking for. I let it be right -- for me, for my body, and for the moment.
So I lay there tonight, my leg extended above and my muscles still shaking with effort, and my gyrotonics instructor looked down at my relaxed fists and easy breathing. She smiled, and I thought for sure she was going to let me go this time, and then she simply said "yes, right."
And pushed me just a little bit further.
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
Showing posts with label Exercise. Show all posts
Showing posts with label Exercise. Show all posts
Thursday, January 21, 2010
Thursday, January 14, 2010
CF and Transplant Update
So I saw my CF doctor today, and my transplant doctor, who thankfully practices in the same building just a few floors up. It was 12:10 when I walked in the building, and 3:00 when I walked out. Not too shabby, considering I did PFTs, vitals, and saw 2 doctors, my CF nurse, and a transplant coordinator in that period. Like a fool I went in without having eaten much though, so by the end of it I was basically ready to rob a McDonalds for some of their salt packets. Needless to say that didn't happen, and we went out for Mexican food* instead.
*There are restaurants in New York City that sell food they claim is "Mexican." In rare cases, they're right, and the food is authentically what one might find in Mexico. These restaurants tend to be small, dirty, and really, really good -- they are also most often found above 100th St. The vast majority of "Mexican" restaurants in this city, however, are some bizarre form of New York cuisine meets sub-par Tex-Mex, but I use that latter term loosely. These restaurants tend to be larger and overpriced, and run the gamut from really fancy to really ridiculous. No one from Colorado, or Texas, or any state West of the Mississippi, would consider these places "Mexican" restaurants, and it's taken me close to 6 years to stop being personally offended by their claims. I mean really, people, I know what a good taco tastes like, and it definitely doesn't involve ground up bagel and hot dog meat in a corn shell, or whatever it is these places are serving. And to any NY readers, I'm very sorry to be the one to tell you this, but you've been totally duped.
Okay, so anyway, before the "Mexican" food, I had the appointments, both of which were generally positive. I saw my CF doctor and blew PFTs without any big surprises, aside from the fact that she asked about this blog, which kind of threw me for a loop. I'm still coughing so we'll see what comes next on the IV front, but everyone's pretty much in agreement that I need a break for a little while. There is some talk of a "2 weeks on, 2 weeks off" sort of regimen from here on out, so I think we're going to play it by ear and just do what we have to do.
She called my port beautiful, and I have to say I'm becoming pretty attached to the little thing myself. It's different from the arm port, which I treated for all intents and purposes like a PICC when it came to showering when accessed, etc, but I'm getting used to it. And it's a whole lot easier than those ridiculous peripherals, no question. I frankly think my veins were plotting a complete mutiny in the not-so-distant future if I didn't shape up and start paying attention to their needs, so I'm definitely not complaining about the new port. I was running out of creative names for all my port/PICC/peripheral drama anyway.
On a very random sidenote, I asked my CF doctor if I would be able to see my lungs (a la the lucky folks at Stanford) because, believe it or not, the topic actually came up. She wasn't sure, but she said at the very least that she would take a picture of them for me. I don't know why this excites me so much, but I have to admit that it does. I guess it's just that they've been in my body for 28 years, and I've kind of put them through hell in all honesty (then again, fair's fair -- they weren't always so nice to me either), so I'd at least like to say goodbye somehow. Even if it's just a picture . . . I feel like I just owe it to myself to see what they (and I) went through with this disease.
Then came the transplant appointment, which was anti-climactic unless you count seeing a slide-by-slide CT scan of your lungs as a good time. I did learn some interesting facts about my upper-left lobe and why I might have such constant, recurring infections, though. I actually feel better when I hear all that sort of information, believe it or not, because 1) it just generally makes me feel more comfortable with the steps I have to take to correct the problem, and 2) it keeps me from beating up on myself for being unable to stay healthy. It's weird -- when I hear about other CFers who are struggling with infections, I never think "oh, they must be doing something wrong," but when it's my lungs I tend to be a little harsher. I guess my mind is trained to find out the cause behind results and to look for logical answers, so when I can't find them I just automatically assume I must be doing something "wrong" (or at least not doing enough things right, if that makes any sense). But apparently I'm not, at least in this case, and there actually are pretty good answers for why things aren't getting any better. So I guess maybe I can cross "solve CF infection mystery" off my to-do list now? Crazy.
I asked my tx doctor about inhaled antibiotics after transplant, because I've been wondering if maybe I'll be able to use colistin once I get new lungs if I get an infection. Nope. Turns out you still have enough of your own airways that things like bronchospasms are still a problem if you had them before, so colistin will still be a no go. The highlight of this conversation? He asked me whether I'd ever tried colistin long-term, and I said that yes, I used to just "suck it up and deal," which then made me laugh and I said something like "no pun intended." He looked at me like he thought I was crazy (or maybe just like he couldn't believe that I could really make that bad of a joke without dying of embarrassment) and we moved on -- really quickly. Good times.
The rest of the visit was so routine that it hardly seems worth recounting to a bunch of CF friends/family/patients with lots of medical experience -- think bloodwork, vitals, long talks about possible IV drug reactions, and waiting rooms with Judge Judy in the background. I'm not entirely sure why Judge Judy seems to be the daytime TV show of choice at my particular hospital, but I guess it could be worse (like, for example, Judge Joe Brown). There is actually one area of the hospital that has two separate waiting areas -- one for in-patients needing transport and one for out-patients and, I guess, guests -- and it tends to play Fox News in one area and CNN in the other. This is the only place in the hospital where I'm ever grateful to be in-patient, and I'll just leave it at that.
So everything went well, and I'm back home with the monster (who is currently chewing on a bone while lying on top of my boots, which would be fine aside from the mini heart attacks I keep having when I glance up and think for a second that he might actually be chewing on the boots -- clearly I either need to train my dog better or start putting away my shoes), and enjoying some downtime before the start of a busy weekend. Luckily I get to kick off tomorrow with a session of gyrotonics (aka my favorite exercise ever), and my mom and I actually just discovered that the large space next to the Whole Foods in my building is opening this weekend as a spinning studio.
Okay, is it just me or does pedaling really hard without really getting anywhere (but with unseen benefits for your body) seem like a really ironic form of exercise for someone on the transplant waiting list?
So of course I plan to try it.
Stay healthy, everyone!
*There are restaurants in New York City that sell food they claim is "Mexican." In rare cases, they're right, and the food is authentically what one might find in Mexico. These restaurants tend to be small, dirty, and really, really good -- they are also most often found above 100th St. The vast majority of "Mexican" restaurants in this city, however, are some bizarre form of New York cuisine meets sub-par Tex-Mex, but I use that latter term loosely. These restaurants tend to be larger and overpriced, and run the gamut from really fancy to really ridiculous. No one from Colorado, or Texas, or any state West of the Mississippi, would consider these places "Mexican" restaurants, and it's taken me close to 6 years to stop being personally offended by their claims. I mean really, people, I know what a good taco tastes like, and it definitely doesn't involve ground up bagel and hot dog meat in a corn shell, or whatever it is these places are serving. And to any NY readers, I'm very sorry to be the one to tell you this, but you've been totally duped.
Okay, so anyway, before the "Mexican" food, I had the appointments, both of which were generally positive. I saw my CF doctor and blew PFTs without any big surprises, aside from the fact that she asked about this blog, which kind of threw me for a loop. I'm still coughing so we'll see what comes next on the IV front, but everyone's pretty much in agreement that I need a break for a little while. There is some talk of a "2 weeks on, 2 weeks off" sort of regimen from here on out, so I think we're going to play it by ear and just do what we have to do.
She called my port beautiful, and I have to say I'm becoming pretty attached to the little thing myself. It's different from the arm port, which I treated for all intents and purposes like a PICC when it came to showering when accessed, etc, but I'm getting used to it. And it's a whole lot easier than those ridiculous peripherals, no question. I frankly think my veins were plotting a complete mutiny in the not-so-distant future if I didn't shape up and start paying attention to their needs, so I'm definitely not complaining about the new port. I was running out of creative names for all my port/PICC/peripheral drama anyway.
On a very random sidenote, I asked my CF doctor if I would be able to see my lungs (a la the lucky folks at Stanford) because, believe it or not, the topic actually came up. She wasn't sure, but she said at the very least that she would take a picture of them for me. I don't know why this excites me so much, but I have to admit that it does. I guess it's just that they've been in my body for 28 years, and I've kind of put them through hell in all honesty (then again, fair's fair -- they weren't always so nice to me either), so I'd at least like to say goodbye somehow. Even if it's just a picture . . . I feel like I just owe it to myself to see what they (and I) went through with this disease.
Then came the transplant appointment, which was anti-climactic unless you count seeing a slide-by-slide CT scan of your lungs as a good time. I did learn some interesting facts about my upper-left lobe and why I might have such constant, recurring infections, though. I actually feel better when I hear all that sort of information, believe it or not, because 1) it just generally makes me feel more comfortable with the steps I have to take to correct the problem, and 2) it keeps me from beating up on myself for being unable to stay healthy. It's weird -- when I hear about other CFers who are struggling with infections, I never think "oh, they must be doing something wrong," but when it's my lungs I tend to be a little harsher. I guess my mind is trained to find out the cause behind results and to look for logical answers, so when I can't find them I just automatically assume I must be doing something "wrong" (or at least not doing enough things right, if that makes any sense). But apparently I'm not, at least in this case, and there actually are pretty good answers for why things aren't getting any better. So I guess maybe I can cross "solve CF infection mystery" off my to-do list now? Crazy.
I asked my tx doctor about inhaled antibiotics after transplant, because I've been wondering if maybe I'll be able to use colistin once I get new lungs if I get an infection. Nope. Turns out you still have enough of your own airways that things like bronchospasms are still a problem if you had them before, so colistin will still be a no go. The highlight of this conversation? He asked me whether I'd ever tried colistin long-term, and I said that yes, I used to just "suck it up and deal," which then made me laugh and I said something like "no pun intended." He looked at me like he thought I was crazy (or maybe just like he couldn't believe that I could really make that bad of a joke without dying of embarrassment) and we moved on -- really quickly. Good times.
The rest of the visit was so routine that it hardly seems worth recounting to a bunch of CF friends/family/patients with lots of medical experience -- think bloodwork, vitals, long talks about possible IV drug reactions, and waiting rooms with Judge Judy in the background. I'm not entirely sure why Judge Judy seems to be the daytime TV show of choice at my particular hospital, but I guess it could be worse (like, for example, Judge Joe Brown). There is actually one area of the hospital that has two separate waiting areas -- one for in-patients needing transport and one for out-patients and, I guess, guests -- and it tends to play Fox News in one area and CNN in the other. This is the only place in the hospital where I'm ever grateful to be in-patient, and I'll just leave it at that.
So everything went well, and I'm back home with the monster (who is currently chewing on a bone while lying on top of my boots, which would be fine aside from the mini heart attacks I keep having when I glance up and think for a second that he might actually be chewing on the boots -- clearly I either need to train my dog better or start putting away my shoes), and enjoying some downtime before the start of a busy weekend. Luckily I get to kick off tomorrow with a session of gyrotonics (aka my favorite exercise ever), and my mom and I actually just discovered that the large space next to the Whole Foods in my building is opening this weekend as a spinning studio.
Okay, is it just me or does pedaling really hard without really getting anywhere (but with unseen benefits for your body) seem like a really ironic form of exercise for someone on the transplant waiting list?
So of course I plan to try it.
Stay healthy, everyone!
Thursday, December 10, 2009
My Day: A CF Picturebook
Chapter 1: Lazy Morning
(Yes, he sleeps on his back. No, I'm not kidding.)
(Yes, he sleeps on his back. No, I'm not kidding.)
Chapter 2: IV Afternoon
(Alternative titles for this blog definitely included "Track Marks: Confessions of an IV Junkie." And in case you're counting, this makes 8 times this year.)
(Alternative titles for this blog definitely included "Track Marks: Confessions of an IV Junkie." And in case you're counting, this makes 8 times this year.)
Chapter 3: Gyrotonics Evening
(Bad picture, good exercise. You can't really see here, but I had 40 lbs of weight going for each leg. Which we followed by full body squats, lunges, and some other major thigh and quad workouts. I had a lot of extra energy and a lot of motivation - you'll see why in a minute.)
(Bad picture, good exercise. You can't really see here, but I had 40 lbs of weight going for each leg. Which we followed by full body squats, lunges, and some other major thigh and quad workouts. I had a lot of extra energy and a lot of motivation - you'll see why in a minute.)
Chapter 4: Bright-Light Night*
(For my transplant friends: yes, this is a FAKE tree. Beautiful, yes. Real, no.)
*Okay, this isn't quite a footnote, but still: thanks go to Victor for the grammar lesson.
Stay well, my wonderful friends.
Wednesday, September 30, 2009
Live Strong
Okay, so I know I've been terrible about updating the blog lately. I really have no excuses for my bad blogiquette, except for the fact that I'm finally feeling good (actually, the right word might be "wonderful") and have been seriously enjoying the process of coming "back to life" after so many revolving door trips to the hospital and so much health drama. I guess actually living leaves less time for my blog than sitting in a hospital room does -- go figure -- but I think it's a sacrifice I can live with.
In other words, it's nice to finally be normal again (even if the definition of "normal" in this case includes jumping about 5 feet every time my phone rings b/c I think it might be "THE Call"). I'm still on IVs, but just Merrem, which I guess is the one antibiotic that seems to hit both my lungs bugs and the silly little critters that decided to infect my now absent port. My doctor and I had talked about stopping the drug on the 1st, which would be tomorrow, but seeing as my homecare company just delivered WAY more than one day's worth of new eclipse balls, I'm thinking I'm in this for the long haul. It's not particularly surprising -- there was some debate about whether I would need IVs for 4 weeks or 6 weeks to totally clear up this blood infection, and my guess is everyone's thinking better safe than sorry at this point. Hard to argue with that logic, believe me. Although considering I started the original lung IVs a week before we even discovered and starting treating the port snafu, I'm definitely feeling ready to be off of IVs sometime soon!
In the meantime, I think I have a little bit of port envy. I'm sure Freud would have a field day with that statement, but it's true -- I have rediscovered that I really, really, REALLY don't like PICC lines. Mostly this is just because I feel like I have to be more careful about my arm when a PICC is in than I ever did with my port (and for good reason: they clot easier and are more prone to infection). The big thing for me is my secret fear that this thing is going to actually rip out of my arm at some point, although that seems unlikely since it's actually stitched on there. (By the way, is that normal? I don't remember having stitches with my old ports -- 9 years ago, remember -- but this one definitely has two stitches connecting it to my arm right where the catheter leaves my body. It's annoying because they hurt under the dressing by pressing into my skin.) So yeah, in the upcoming weeks/months I have to decide if I want to 1) leave this PICC in for several months regardless of whether I'm on IVs the whole time and hope it lasts me to transplant (downside: annoying, plus have to deal with above-mentioned secret fear even while not on IVs, which seems unfair), 2) get this PICC pulled and get a new one if/when I need new IVs (downside: my veins are pretty much shot -- it took IR 3 hours to place this one), or 3) get a port until transplant (downside: I'm still a little gun shy on the port thing, just because of recent experience, plus it might have to come out with the tx surgery anyway, making it pointless?). Any suggestions out there from people who have been through this choice -- or something vaguely similar? All advice is welcome.
My other main focus right now (besides, you know, getting back together with friends and enjoying this great fall weather we've been having) has been on regaining some of my strength that I lost during this whole ordeal. It's fair to say lying around in a hospital bed, while sometimes good for your overall well being, is NOT good for your muscles. Seriously, for the first week I was out of there I would get tired after a 10 minute walk to the store -- and when I say "tired" I mean like 2-hour-nap-style exhaustion. Obviously part of that was just my body's need for continued rest since I wasn't totally healed yet, but a lot of it was just plain weakness, which I happen to think is both understandable and excusable after 4 hospital stays in as many weeks. Understandable, yes. Fun, no. So lately I've been trying to face the problem head-on and have gotten back in touch with my old friend the treadmill, as well as much outside walking as I can handle and my new favorite resistance training/core building exercise: gyrotonics. Love this. There is a great place close to my house where I can get private instruction a couple of times a week, and I'm totally addicted. Right now I'm going easy on the arms (see previous ramblings re: PICC issues, not to mention the surgery I had on the other arm a couple of weeks ago), but my legs and core feel amazing! You do work out with weights as part of this technique, but it's also very much about flexibility and working your muscles together as a complete system. I think of it as yoga meets pilates meets Sven the bodybuilder. Fun stuff.
The main difference in my exercise mentality over the past couple of weeks has been that the focus right now is on getting ME as strong as I can possibly be. I know that sounds really simple, but to be honest, for a while there after I heard the word "transplant" I wasn't really very focused on my personal well-being when I hit the gym. Weird, huh? Let me explain what I mean: I had heard so many stories (inspiring, to be sure) about people raising their lung function and getting off the list through exercise that THAT became my only goal. I was constantly waiting for some sort of "treadmill miracle" to take place that would somehow shoot my numbers up out of transplant range, banish all infection, and let me get back to a place where CF didn't always have to be such a huge obstacle for me each morning. But the fact of the matter is, the only thing I gained out of that whole thing was a sense of failure and a lot of panic attacks. (As an aside here, I'm sure it doesn't help that I'm a total "type A" personality and tend to be VERY hard on myself, and I'm also sometimes a rather unrelenting optimist, which is normally a great thing but here maybe led me to set my sights on something that wasn't entirely realistic for me.) The point is: I wasn't working out for me so much as I was working out for my NUMBERS -- and as anyone who's gone crazy trying to work out just to lose weight will tell you, it's a lot harder to really focus on getting healthy when you're too focused on a print out from some silly machine.
So now here's the deal: I would love to get off the transplant list, but I really feel that my best bet for doing so is to actually get transplanted. Don't get me wrong, I'd love to make these lungs last a few more years, and I do believe in miracles, but I also have faith that transplant will be a blessing and an opportunity sent from God, my donor, and a great team of doctors -- it will not be a failure on my part. Having realized this much is true (and, sheesh, it took me long enough), I'm going into this new stretch of exercise and life with the goal of becoming as strong as I can, whether that strength ultimately helps me to avoid transplant or to come through it that much easier when THE Call actually comes. And if the numbers on the machine never change for me again (or even if they go down), well, I'd rather be a strong and active 30% than a defeated and panicky one who wonders why she can't be a 35%. And right now I'm feeling strangely proud of all my cysters and fibros who push themselves to do what they can, because I'm more sure than ever that this game is about so much more than just the numbers.
As a personal sidebar, I completely LOVE using the word "fibros." Cystic slang at its absolute finest (and most ridiculous).
Stay well everyone.
In other words, it's nice to finally be normal again (even if the definition of "normal" in this case includes jumping about 5 feet every time my phone rings b/c I think it might be "THE Call"). I'm still on IVs, but just Merrem, which I guess is the one antibiotic that seems to hit both my lungs bugs and the silly little critters that decided to infect my now absent port. My doctor and I had talked about stopping the drug on the 1st, which would be tomorrow, but seeing as my homecare company just delivered WAY more than one day's worth of new eclipse balls, I'm thinking I'm in this for the long haul. It's not particularly surprising -- there was some debate about whether I would need IVs for 4 weeks or 6 weeks to totally clear up this blood infection, and my guess is everyone's thinking better safe than sorry at this point. Hard to argue with that logic, believe me. Although considering I started the original lung IVs a week before we even discovered and starting treating the port snafu, I'm definitely feeling ready to be off of IVs sometime soon!
In the meantime, I think I have a little bit of port envy. I'm sure Freud would have a field day with that statement, but it's true -- I have rediscovered that I really, really, REALLY don't like PICC lines. Mostly this is just because I feel like I have to be more careful about my arm when a PICC is in than I ever did with my port (and for good reason: they clot easier and are more prone to infection). The big thing for me is my secret fear that this thing is going to actually rip out of my arm at some point, although that seems unlikely since it's actually stitched on there. (By the way, is that normal? I don't remember having stitches with my old ports -- 9 years ago, remember -- but this one definitely has two stitches connecting it to my arm right where the catheter leaves my body. It's annoying because they hurt under the dressing by pressing into my skin.) So yeah, in the upcoming weeks/months I have to decide if I want to 1) leave this PICC in for several months regardless of whether I'm on IVs the whole time and hope it lasts me to transplant (downside: annoying, plus have to deal with above-mentioned secret fear even while not on IVs, which seems unfair), 2) get this PICC pulled and get a new one if/when I need new IVs (downside: my veins are pretty much shot -- it took IR 3 hours to place this one), or 3) get a port until transplant (downside: I'm still a little gun shy on the port thing, just because of recent experience, plus it might have to come out with the tx surgery anyway, making it pointless?). Any suggestions out there from people who have been through this choice -- or something vaguely similar? All advice is welcome.
My other main focus right now (besides, you know, getting back together with friends and enjoying this great fall weather we've been having) has been on regaining some of my strength that I lost during this whole ordeal. It's fair to say lying around in a hospital bed, while sometimes good for your overall well being, is NOT good for your muscles. Seriously, for the first week I was out of there I would get tired after a 10 minute walk to the store -- and when I say "tired" I mean like 2-hour-nap-style exhaustion. Obviously part of that was just my body's need for continued rest since I wasn't totally healed yet, but a lot of it was just plain weakness, which I happen to think is both understandable and excusable after 4 hospital stays in as many weeks. Understandable, yes. Fun, no. So lately I've been trying to face the problem head-on and have gotten back in touch with my old friend the treadmill, as well as much outside walking as I can handle and my new favorite resistance training/core building exercise: gyrotonics. Love this. There is a great place close to my house where I can get private instruction a couple of times a week, and I'm totally addicted. Right now I'm going easy on the arms (see previous ramblings re: PICC issues, not to mention the surgery I had on the other arm a couple of weeks ago), but my legs and core feel amazing! You do work out with weights as part of this technique, but it's also very much about flexibility and working your muscles together as a complete system. I think of it as yoga meets pilates meets Sven the bodybuilder. Fun stuff.
The main difference in my exercise mentality over the past couple of weeks has been that the focus right now is on getting ME as strong as I can possibly be. I know that sounds really simple, but to be honest, for a while there after I heard the word "transplant" I wasn't really very focused on my personal well-being when I hit the gym. Weird, huh? Let me explain what I mean: I had heard so many stories (inspiring, to be sure) about people raising their lung function and getting off the list through exercise that THAT became my only goal. I was constantly waiting for some sort of "treadmill miracle" to take place that would somehow shoot my numbers up out of transplant range, banish all infection, and let me get back to a place where CF didn't always have to be such a huge obstacle for me each morning. But the fact of the matter is, the only thing I gained out of that whole thing was a sense of failure and a lot of panic attacks. (As an aside here, I'm sure it doesn't help that I'm a total "type A" personality and tend to be VERY hard on myself, and I'm also sometimes a rather unrelenting optimist, which is normally a great thing but here maybe led me to set my sights on something that wasn't entirely realistic for me.) The point is: I wasn't working out for me so much as I was working out for my NUMBERS -- and as anyone who's gone crazy trying to work out just to lose weight will tell you, it's a lot harder to really focus on getting healthy when you're too focused on a print out from some silly machine.
So now here's the deal: I would love to get off the transplant list, but I really feel that my best bet for doing so is to actually get transplanted. Don't get me wrong, I'd love to make these lungs last a few more years, and I do believe in miracles, but I also have faith that transplant will be a blessing and an opportunity sent from God, my donor, and a great team of doctors -- it will not be a failure on my part. Having realized this much is true (and, sheesh, it took me long enough), I'm going into this new stretch of exercise and life with the goal of becoming as strong as I can, whether that strength ultimately helps me to avoid transplant or to come through it that much easier when THE Call actually comes. And if the numbers on the machine never change for me again (or even if they go down), well, I'd rather be a strong and active 30% than a defeated and panicky one who wonders why she can't be a 35%. And right now I'm feeling strangely proud of all my cysters and fibros who push themselves to do what they can, because I'm more sure than ever that this game is about so much more than just the numbers.
As a personal sidebar, I completely LOVE using the word "fibros." Cystic slang at its absolute finest (and most ridiculous).
Stay well everyone.
Wednesday, April 15, 2009
One Day in April
April 15, 2009: I'm pretty sure most people think of today as tax day. (Or at least most American people anyway . . . some Italians probably know it as da Vinci's birthday, and the Germans might remember it as the day Bergen-Belsen was liberated.) It's also the day major league baseball was integrated, and the anniversary of insulin hitting the market for all you diabetics. For some political activists today is a major protest day and for one very lucky portugese water dog it's his first full day as official "first puppy." It's the day after my dog got a really really bad haircut that caused my mom and I to nickname him Sammy the Rat (his self-esteem will probably never recover) and it's the first night I have plans with friends since getting sick this last time. Oh yeah, and it's exactly one week since I last set foot in my office.
But hey, who's counting?
Last night I decided I was over being sick. I was being kinda whiney and pitiful and I just got sick of it (pun intended). So this morning I got up, ate breakfast, tackled my ridiculous morning IV schedule, and moved my ass out the door to the gym. I didn't do too badly, honestly. 25 minutes on the treadmill with an incline of 8, and I went 1.8 miles. I would have gone faster, but I'm trying really hard to keep my heartrate in the healthy cardio range for me (145-160) without letting it go up into the "holy shit calorie burning" range (165+) that my doctor wants me to avoid. So I kept myself on 2.5 liters and forced myself to slow to a walk everytime it threatened to go too high. Then I cooled off at a walk for 3 minutes to take my distance up to an even 2 miles. Anyway, I'm no Lance Armstrong obviously, but I'd say 2 miles in the middle of an exacerbation isn't doing too badly. And when I talked to my tx doctor the other day he told me that I was strong enough that I wouldn't need any rehab pre-surgery, which I took as kind of a gold star for my homework. I'm probably being a little bit overly self-congratulatory here, but I'm okay with that right now.
I'm not so okay with not working. That's gonna be a problem. There are all these factors to consider right now, and I'm feeling a little overwhelmed with having to make these choices. I know I'm lucky to have them, but it's still a lot to wrap my head around at 27. I'm not going to waste space boring everyone with this again, but yeah - it's still on my mind.
Last night I went to town looking up every single piece of information I could on my new little friend achromobacter xylosoxidans (which I have not-so affectionately termed "achromobastard"). It looks like it's another pain in the ass to deal with, but not associated with any significant prognosis changes for most CFers. And it's not a counterindication to transplant, apparently, which is huge, especially since the first thing I found on wiki simply said: "The Achromobacter are a genus of bacteria, included in the order Burkholderiales."
Yeah, I think my heart pretty much stopped when I read that initially. Apparently I'm easily freaked out. But I'm slowly trying to figure this one out, and slowly trying to figure work out, and slowly getting back into exercise, and probably slowly going insane in the process. But that's nothing new anyway ;)
I see my doctor tomorrow in the brand new CF center at Columbia Pres. I'm hoping I get to blow PFTs - I blew a 35% after 5 weeks last IV course, but never did them again after the full 6 weeks, and then I didn't do them at the start of this infection b/c my doctor doesn't really see the point of freaking me out with low numbers when we know already there's an underlying infection and we have to treat it. Have I mentioned that I think she's wonderful?
Anyway, here's hoping I can post again tomorrow with numbers back up to baseline, or at least pretty close. And maybe I can kick this achromobastard to the curb for good and not have it become another chronic aspect to this whole CF thing. Because if I'm really honest, I think I'm due for a break at this point.
Seriously.
But hey, who's counting?
Last night I decided I was over being sick. I was being kinda whiney and pitiful and I just got sick of it (pun intended). So this morning I got up, ate breakfast, tackled my ridiculous morning IV schedule, and moved my ass out the door to the gym. I didn't do too badly, honestly. 25 minutes on the treadmill with an incline of 8, and I went 1.8 miles. I would have gone faster, but I'm trying really hard to keep my heartrate in the healthy cardio range for me (145-160) without letting it go up into the "holy shit calorie burning" range (165+) that my doctor wants me to avoid. So I kept myself on 2.5 liters and forced myself to slow to a walk everytime it threatened to go too high. Then I cooled off at a walk for 3 minutes to take my distance up to an even 2 miles. Anyway, I'm no Lance Armstrong obviously, but I'd say 2 miles in the middle of an exacerbation isn't doing too badly. And when I talked to my tx doctor the other day he told me that I was strong enough that I wouldn't need any rehab pre-surgery, which I took as kind of a gold star for my homework. I'm probably being a little bit overly self-congratulatory here, but I'm okay with that right now.
I'm not so okay with not working. That's gonna be a problem. There are all these factors to consider right now, and I'm feeling a little overwhelmed with having to make these choices. I know I'm lucky to have them, but it's still a lot to wrap my head around at 27. I'm not going to waste space boring everyone with this again, but yeah - it's still on my mind.
Last night I went to town looking up every single piece of information I could on my new little friend achromobacter xylosoxidans (which I have not-so affectionately termed "achromobastard"). It looks like it's another pain in the ass to deal with, but not associated with any significant prognosis changes for most CFers. And it's not a counterindication to transplant, apparently, which is huge, especially since the first thing I found on wiki simply said: "The Achromobacter are a genus of bacteria, included in the order Burkholderiales."
Yeah, I think my heart pretty much stopped when I read that initially. Apparently I'm easily freaked out. But I'm slowly trying to figure this one out, and slowly trying to figure work out, and slowly getting back into exercise, and probably slowly going insane in the process. But that's nothing new anyway ;)
I see my doctor tomorrow in the brand new CF center at Columbia Pres. I'm hoping I get to blow PFTs - I blew a 35% after 5 weeks last IV course, but never did them again after the full 6 weeks, and then I didn't do them at the start of this infection b/c my doctor doesn't really see the point of freaking me out with low numbers when we know already there's an underlying infection and we have to treat it. Have I mentioned that I think she's wonderful?
Anyway, here's hoping I can post again tomorrow with numbers back up to baseline, or at least pretty close. And maybe I can kick this achromobastard to the curb for good and not have it become another chronic aspect to this whole CF thing. Because if I'm really honest, I think I'm due for a break at this point.
Seriously.
Friday, April 10, 2009
27 Years, 4 Months, 14 Days
. . . and counting.
Okay so I'm not going home today. The doctor (who happens to be my doctor's fraternal twin sister and another pulmonologist at this hospital) came to see me pretty early this morning. I had just woken up and had yet to do xopenex or my first airway clearance, so needless to say my O2 sats probably weren't as high as they could have been. I was really hoping to break out today, but honestly I guess one more day might actually be in my best interest (cringe).
I did get to leave my room for a walk today. Because of the whole CF = contact isolation thing, I'm not allowed to leave my room alone. But the PT came and actually had time to stay and take me for a walk after my CPT, so that was HUGE. Getting out of the room was totally key to my sanity, and getting back into some sort of exercise routine as fast as possible is definitely key to my O2 saturations coming back up. I begged the PT to get me an exercise bike if possible, but at the very least she left instructions with the nurse's station that I was to be allowed to take walks on the ward as long as I gowned first and took proper hand washing precautions. So I guess I'm about as free as anyone ever is on lock-up isolation.
So yeah, the walk. We did a solid 15 minutes at a nice brisk pace. I would have liked to go longer, but she had to leave (and she said SHE was tired, lol). I was just so damn happy to be moving I feel like I could have gone for miles! We did bring the portable O2 tank, and she started me out on 2 liters because we had just done CPT and so I was already a little "warmed up", so to speak. After a couple of laps, my O2 was at 90 and occasionally 89. So she cranked it up to 3.5 liters and we kept going. Well, I felt great, I was moving fast AND talking the whole time, but my O2 stayed exactly the same. Finally, it dropped to 88 after 6 laps or so and she insisted we stop for a sec to rest. So we did, and she looks down at the tank, and suddenly she covers her mouth with her hand and gasps. Turns out she had connected the tubing to the WRONG nozzle -- it was actually connected to the one they use to drain the tank. So I had been statting at 90-89 for 6 laps, while talking, at a pace she had already called "impressive" on room air! I was definitely pleased, and she made a big note of that on her little recording sheet. Then she turned it on for real at 1 liter and we went for another 5 laps with my O2 at 92. Woo-hoo!
She told me I could go out sans O2 for my afternoon walk(s) but that I had to promise to pace myself and stop after 5 laps max. She couldn't leave me a pulseox so obviously I'll play by the rules since I can't self-monitor. No sense pushing it too hard, and again - my new goal is to be aggressive AND know my limits. I'm naturally kind of a stubborn little brat (or another word starting with B . . .) so I think I need to start recognizing the difference between good pushing and bad pushing. And I appreciate the offers for a good kick in the ass from some of you, but you know, it's tough sometimes.
I miss my puppy. I want to go home. Above all, I am one DIRTY little cystic right now (yesterday I had salt crystals fall out of my hair from all the sweat coupled with the no showering rule). I still hate IVs and I still feel frustrated beyond belief that I got sick again so soon and that my sats are taking so long to bounce back. None of that has changed. But I guess you learn to see victories wherever they start to hide after a while. Kind of a "one small step for Piper, one gigantic step for Piper's lungs" type of thing.
It just so happens those steps are on the 9th floor of Columbia Presbyterian Hospital for now. Sigh.
Okay so I'm not going home today. The doctor (who happens to be my doctor's fraternal twin sister and another pulmonologist at this hospital) came to see me pretty early this morning. I had just woken up and had yet to do xopenex or my first airway clearance, so needless to say my O2 sats probably weren't as high as they could have been. I was really hoping to break out today, but honestly I guess one more day might actually be in my best interest (cringe).
I did get to leave my room for a walk today. Because of the whole CF = contact isolation thing, I'm not allowed to leave my room alone. But the PT came and actually had time to stay and take me for a walk after my CPT, so that was HUGE. Getting out of the room was totally key to my sanity, and getting back into some sort of exercise routine as fast as possible is definitely key to my O2 saturations coming back up. I begged the PT to get me an exercise bike if possible, but at the very least she left instructions with the nurse's station that I was to be allowed to take walks on the ward as long as I gowned first and took proper hand washing precautions. So I guess I'm about as free as anyone ever is on lock-up isolation.
So yeah, the walk. We did a solid 15 minutes at a nice brisk pace. I would have liked to go longer, but she had to leave (and she said SHE was tired, lol). I was just so damn happy to be moving I feel like I could have gone for miles! We did bring the portable O2 tank, and she started me out on 2 liters because we had just done CPT and so I was already a little "warmed up", so to speak. After a couple of laps, my O2 was at 90 and occasionally 89. So she cranked it up to 3.5 liters and we kept going. Well, I felt great, I was moving fast AND talking the whole time, but my O2 stayed exactly the same. Finally, it dropped to 88 after 6 laps or so and she insisted we stop for a sec to rest. So we did, and she looks down at the tank, and suddenly she covers her mouth with her hand and gasps. Turns out she had connected the tubing to the WRONG nozzle -- it was actually connected to the one they use to drain the tank. So I had been statting at 90-89 for 6 laps, while talking, at a pace she had already called "impressive" on room air! I was definitely pleased, and she made a big note of that on her little recording sheet. Then she turned it on for real at 1 liter and we went for another 5 laps with my O2 at 92. Woo-hoo!
She told me I could go out sans O2 for my afternoon walk(s) but that I had to promise to pace myself and stop after 5 laps max. She couldn't leave me a pulseox so obviously I'll play by the rules since I can't self-monitor. No sense pushing it too hard, and again - my new goal is to be aggressive AND know my limits. I'm naturally kind of a stubborn little brat (or another word starting with B . . .) so I think I need to start recognizing the difference between good pushing and bad pushing. And I appreciate the offers for a good kick in the ass from some of you, but you know, it's tough sometimes.
I miss my puppy. I want to go home. Above all, I am one DIRTY little cystic right now (yesterday I had salt crystals fall out of my hair from all the sweat coupled with the no showering rule). I still hate IVs and I still feel frustrated beyond belief that I got sick again so soon and that my sats are taking so long to bounce back. None of that has changed. But I guess you learn to see victories wherever they start to hide after a while. Kind of a "one small step for Piper, one gigantic step for Piper's lungs" type of thing.
It just so happens those steps are on the 9th floor of Columbia Presbyterian Hospital for now. Sigh.
Sunday, April 5, 2009
Self, Shout-Outs, and Sammy (Of course!)
Hi guys!
So first off, a couple of people have asked me lately about the arm port and how much it "shows" when it's not accessed. I thought I'd share a couple of pictures since right now seems to be the first time in FOREVER that I can actually showcase the darn thing without a needle sticking out of it. Fun, fun. Anyway, here is is, for your viewing pleasure. (And for those of you who might want to see it accessed, well, I have photos of that in my archives from 2008.)
1) Close up of the port site (keep in mind that it looks angry right now because my last IVs just ended a week or so ago):
2) View of my arm normally (notice that it's more or less invisible, unless you're looking REALLY hard for the tiny bump):
3) Me, just so everyone trusts that this really is my arm:
4) Sammybear, because really, why not?
Bonus points if you can spot the O2 tanks in that last shot, btw ;)
In other news, I'm changing up my routine a bit. Mainly I've started separating Dnase and HTS, which isn't thrilling since it makes the third treatment a requirement instead of optional. Oh well, I guess I knew I should be doing three anyways. And I've also started a trial run on the PharmaNAC fizzy tabs. I ordered a month's supply (assuming I do 1 tab, twice a day, which is what my doc recommended). I doubt I'll see much change in a month, so I'll probably need to extend my testing time. I've know some people who swear by this stuff and then others who claim they saw no change even after a year. But at this point I figure I need to keep trying everything I can. I'm not looking for a miracle cure (although if anyone's offering one, I'll take it!) but I need all the help I can get just to break this infection cycle. Blah.
And my other big news...(drumroll)...I gained 2 pounds! This might not sound like much, but considering my doctor has been encouraging me to exercise LESS just so I can preserve more calories, 2 pounds is a breakthrough! And I'm still hitting the cardio - so I managed to gain AND stay on top of my game exercise wise. Very proud of that.
I just realized this is a very self-congratulatory post. Which frankly I'm okay with, because we need those every so often. But before I go too far overboard with the me me me thing, can I just say how much some of my fellow CFers have been blowing me away lately? Seriously, I know one who has been super sick and continues to reach outside of herself to everyone else and leave encouraging comments on my blog (and others) even though I know she's going through a rough time with lots of changes, one who has been going through a hellish road with sinus surgery and still sounds less whiney than I ever do, one who lost a dear friend and decided to change it into a beautiful project to help other cystics, one who is currently on IVs and has some other serious health complications but never seems to let it get her down, one who brought her FEV1 up from the start of transplant range all the way up to over 50%, one who selflessly allowed his amazing wife to share his transplant story start to finish for the benefit of others, one who is participating in a study of an new inhaled version of an antibiotic to help all of us, one who posts amazing articles and helpful info to her blog daily, one who was brave enough to post a great glimpse into the "raw" side of CF on her blog last week, one who powers on in the face of huge obstacles from his health and from outside sources, one who I recently corresponded with who is currently putting us all to shame with his amazing exercise routine (and putting me personally to shame with his awesome attitude), and several -- both pre- and post-transplant -- who blow me away with their ability to be amazing mamas and awesome people. This is in addition to the countless other cystics I know who are just plain unbelievable. Seriously, I can't imagine a more selfless, inspiring group.
I don't mean to sound sappy, but honestly I really am in awe of these people. Especially because they're not afraid to admit, collectively, that CF sucks, that it's hard work, and that acknowledging that does not in any way make you less of a fighter. And I'm really proud to count myself among their ranks.
So first off, a couple of people have asked me lately about the arm port and how much it "shows" when it's not accessed. I thought I'd share a couple of pictures since right now seems to be the first time in FOREVER that I can actually showcase the darn thing without a needle sticking out of it. Fun, fun. Anyway, here is is, for your viewing pleasure. (And for those of you who might want to see it accessed, well, I have photos of that in my archives from 2008.)
1) Close up of the port site (keep in mind that it looks angry right now because my last IVs just ended a week or so ago):
2) View of my arm normally (notice that it's more or less invisible, unless you're looking REALLY hard for the tiny bump):
3) Me, just so everyone trusts that this really is my arm:
4) Sammybear, because really, why not?
Bonus points if you can spot the O2 tanks in that last shot, btw ;)
In other news, I'm changing up my routine a bit. Mainly I've started separating Dnase and HTS, which isn't thrilling since it makes the third treatment a requirement instead of optional. Oh well, I guess I knew I should be doing three anyways. And I've also started a trial run on the PharmaNAC fizzy tabs. I ordered a month's supply (assuming I do 1 tab, twice a day, which is what my doc recommended). I doubt I'll see much change in a month, so I'll probably need to extend my testing time. I've know some people who swear by this stuff and then others who claim they saw no change even after a year. But at this point I figure I need to keep trying everything I can. I'm not looking for a miracle cure (although if anyone's offering one, I'll take it!) but I need all the help I can get just to break this infection cycle. Blah.
And my other big news...(drumroll)...I gained 2 pounds! This might not sound like much, but considering my doctor has been encouraging me to exercise LESS just so I can preserve more calories, 2 pounds is a breakthrough! And I'm still hitting the cardio - so I managed to gain AND stay on top of my game exercise wise. Very proud of that.
I just realized this is a very self-congratulatory post. Which frankly I'm okay with, because we need those every so often. But before I go too far overboard with the me me me thing, can I just say how much some of my fellow CFers have been blowing me away lately? Seriously, I know one who has been super sick and continues to reach outside of herself to everyone else and leave encouraging comments on my blog (and others) even though I know she's going through a rough time with lots of changes, one who has been going through a hellish road with sinus surgery and still sounds less whiney than I ever do, one who lost a dear friend and decided to change it into a beautiful project to help other cystics, one who is currently on IVs and has some other serious health complications but never seems to let it get her down, one who brought her FEV1 up from the start of transplant range all the way up to over 50%, one who selflessly allowed his amazing wife to share his transplant story start to finish for the benefit of others, one who is participating in a study of an new inhaled version of an antibiotic to help all of us, one who posts amazing articles and helpful info to her blog daily, one who was brave enough to post a great glimpse into the "raw" side of CF on her blog last week, one who powers on in the face of huge obstacles from his health and from outside sources, one who I recently corresponded with who is currently putting us all to shame with his amazing exercise routine (and putting me personally to shame with his awesome attitude), and several -- both pre- and post-transplant -- who blow me away with their ability to be amazing mamas and awesome people. This is in addition to the countless other cystics I know who are just plain unbelievable. Seriously, I can't imagine a more selfless, inspiring group.
I don't mean to sound sappy, but honestly I really am in awe of these people. Especially because they're not afraid to admit, collectively, that CF sucks, that it's hard work, and that acknowledging that does not in any way make you less of a fighter. And I'm really proud to count myself among their ranks.
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