March 23, 2009

Happy Birthday Mom!

Today is my mother's 61st birthday. Over the years, I've come to realize what a great mom I have. Comparing my experiences to those of my friends highlights how lucky I've been. While other moms have been absentee, abusive, or simply neglectful, my mom has been a champion parent - toiling since her mid-20's to raise 4 kids, the first of which (me) was always sick as a child and was finally diagnosed and treated - but diagnosed with an incurable and ultimately terminal condition. Not good news for any parent. And while I'm sure she had her private moments of weakness, I never saw those. My mom has not only been a good parent, but has been a model of how to raise a child with CF. She never let me use it as an excuse to not have to do something, or to be treated special. She's always looked out for me without being overbearing (like some CF moms become) and has encouraged me to reach for opportunities.

Even more impressive, she dealt with a husband who was gone a lot in the early years - off working in some shithole jungle for Uncle Sam, or himself in the hospital fighting cancer. It's to her credit that she even decided to have more kids than just my first sister and I - thus the twins came into the world. Then, she successfully owned and operated two children's clothing stores for several years before the whole family moved to Missouri.

And neither was that move a picnic either. Dad went ahead and we were separated for almost a year before he was ready for the family to move. In that time, Mom took care of business, closing her stores, wrapping up loose ends, selling the house, etc. Plus taking care of four kids.

Lately, she continues to be a strong example of what a mother and wife should be. To be sure, we kids haven't presented her with too many problems (none of us are in jail or are junkies or anything), but she's been attentive to her grandchild and not too nagging about the rest of us getting married. She's had to return to her role as caregiver as Dad has gotten himself a chronic condition and has not only coped, but gone the extra mile in setting up a yearly conference for caregivers like herself. And through all of that, she's faced down a bout of cancer of her own.

One thing's for sure: they don't make them like her anymore. Hell, I'm not sure they made them like her when they made HER! Like the pioneer women of the 1800's, Mom has managed to call up an indomitable spirit year after year under a series of frankly terrible circumstances. Through it all, she mothers and she wives and she conquers and she succeeds.

In the last year, two of my good friends have lost their fathers and two have lost their mothers; and I've seen the devastation that causes them. Seeing that has helped prepare me for when I'll eventually see my parents pass on, but in the meantime, I am everyday grateful for their presence in my life. Today, I am especially thankful for my mother and wish her long life and continued happiness. Happy Birthday, Mom.

March 22, 2009


I posted this on a private email list I'm on. No, it had nothing to do with the topic of the list.

As a child, I had great dreams, too, especially when I heard of
supercomputers like the CRAY-II helping mankind make great leaps in
science and physics. But as a teenager, I learned that man
accomplished his greatest tasks (landing on the moon and the atomic
bomb) with no more than a slide-rule and belief that what we dream, we
can accomplish; and at the same time noticed a kind of stagnation -
our forward momentum seemed to be interrupted.

Today, though, we are scrapping the space shuttle program with no
replacement program ready to go. We are not colonizing the moon; we
are not exploring Mars. We start wars for as little pretense as ever,
with endings that result in no conquest, no moral determination, no
resolution. Instead of a society that dreams and builds, we - the
world - has become a society that condemns and restricts. Once-great
institutions, such as the Boy Scouts, the masons, and the Salvation
Army, have been laid low, replaced with embittered and embattled
institutions which exist for no other reason than to restrict and
suppress, such as HOAs.

Isaac Asimov saw all of this coming. I think he did not imagine it
would happen so soon. He's probably rolling over in his grave, as
must be so many of the Greatest Generation who worked so hard to build
a shining new world from the ashes of WWII.

Such things have been on my mind a lot, lately. There's so little my generation has contributed to the advancement of society. Oh, it's not for lack of trying or motivation - it just...dissipates. I voted for Obama simply because I believed him to be a better choice than McCain. Our country needs a new direction and I didn't see McCain providing that. I was not convinced, nor am I now, that Obama can - but his chances are better. "Change" was a great catch-word; but change doesn't come without cooperation, and Obama's ascendancy has not mended great rifts and there is less cooperation than before. Much of the non-cooperation, it seems, is simply out of spite. And I wonder how our nation can survive; for if this is how we act at home, how can we possibly be taken seriously on the world stage?

Lousy run today. did not go to the race. Just stayed home, got out about 3:30 and did 4 miles. 52 degrees, cloudy, and as it turned out, VERY windy. I should have worn gloves and a hat. I was not able to run more than 2/3 of the distance, total, so I was walking about half the time. Sometimes I didn't have the breath, sometimes I just couldn't fight the wind. March. In like a lamb, out like a lion.

Gotta be up early tomorrow and go in and have bloodwork done. Is it more convenient waiting for a nurse to come draw blood? Yes; but it is more reliable to go to the lab myself. They are getting to know me by name there. My doctor and I are still chasing down this blood sugar thing; the most recent development is low platelets, perhaps due to the Vanco. Not very low, but enough the doctor was concerned because my history is of no problems there.

I am perhaps a little depressed. I have lots of things to do which are creative and energize me, but I find it hard to maintain energy for any length of time. Also, my favorite show of all time is now over. I am going to have download purchase the show as it comes out on DVD, and give it an honored place in my library.

So as not to end this post on a downer, I want to highlight a new series on TV: Better Off Ted. I've only seen the pilot so far, but I was chuckling all the way through. It is like The Office mixed with Mad Men mixed with Scrubs. And it means Portia DeRossi is back on TV. I looooove Portia DeRossi.

March 18, 2009

i ran all the way up a hill

So Monday morning, bright and early, I went to Columbia's east 60th street facility to get my PICC placed. this is a PICC line and the blue t-handle part is the introducer:

I got there before they were open, but one Dr. Sterling was already there. When his nurses arrived, we got busy. The procedure was very professional and I felt safer there than uptown. I know trained RNs can put PICCs in, but I just felt better that a doctor was doing it. He only gave me one shot of lidocaine, though, and I don't think that was enough - the lidocaine did something - but it wasn't the painless experience I had in January. However, he was very fast and they had an imager right there, so the doctor could see exactly where the catheter was sitting as he placed it. I didn't have to wait four hours for a chest x-ray this time. But the sight of my lungs - a whole lotta white on the X-ray - made me imagine for a moment that I could hear a bell. (These are not my lungs, but you can see the PICC line in the x-ray - it is a faint, regular arc in the heart area.)

I stayed at the clinic to run my first full dose of Vancomycin. I'd had a reaction to this on Friday, so DC'd it until I could do it in a controlled environment, in case epinephrine would be needed. I took 50mg of Benadryl beforehand and had no problems with the Vanco, though the Benadryl made me hazy. I continued using the Benadryl for the next few doses, then last night cut the Benadryl to 25mg and today didn't use any. I guess I have desensitized to the Vanco. I have to keep my fluid intake up. Vanco is hard on the kidneys, and with the high blood sugar under control, I'm not as thirsty as I was - so I have to remember to keep drinking.
OK! On to the run report: sunny and 60 degrees! WOW! Whether or not my lungs were going to cooperate, I got out there. It was so nice to wear shorts and only one shirt. :D

The run itself was not one for the record books. It was short and interrupted by a lot of walking and pauses for traffic or coughing, but there was more running than there was walking - generally about a 3:1 ratio, I guess. That gives me hope. The coughing brought up some gunk, but not as much as I was bringing up a couple weeks ago - so the drugs are working.

Two things brand this run a success: first, I made it up a hill! Sure, it wasn't a long hill - just 200 yards between 5th and 6th avenues, but I was about 3/4 up it before I realized I was doing OK and that I might make it to the top. So I pushed on. Of course, I had to walk once I reached the top and I thought my chest was going to explode, but it was nice to finally do that hill.

Second: by the end of the run, when I stopped at the grocery store, I was able to actually draw a deep breath. I still can't get air in and out of my lungs very fast, but this was the deepest breath I've drawn in weeks and it felt so wonderful I nearly cried. I took advantage of how open my lungs were (once I got home) by taking a quick shower and sitting down to do a whole round of therapy with the Vest and all four nebulized medications.
Had a nurse, Cy, visit this morning to change the dressing on the PICC. I'd had my doubts about this nurse, since he didn't sound too clear on the phone and seemed fairly stubborn about what the written orders were. But he was a nice enough guy, was neatly dressed and well-prepared and was quick and efficient. If I am ever guilty of underestimating older professionals, I'll have to remember Cy.

Last topic: showering. Because of the IV line, I can't get that area of my arm wet, which boils down to showering with my arm elevated and doing all the shampooing and soaping and shaving with my other hand. This is not as easy as it sounds. Try it sometime: put a sock around your bicep and keep it dry while showering. If it gets moist, you fail. Nurse and doctors will say, just wrap it in saran wrap. Yeah. They don't seem to be aware that a) water will still find its way along your arm under the saran wrap and b) it's difficult to wrap your upper arm with saran wrap and obtain anything resembling water-tight with ONE HAND. I think I may by one of these PICC line protectors:

OK, really last topic: over on Because I Said So, it appears little Brooklyn sent Indiana Jones on an adventure. I don't remember how I found this blog, but I read it often because it approaches parenting in a style that I hope I can emulate some day.

March 14, 2009

NYRR 8000

I did go to the 8K race today. It's no use just sleeping. I was tired and cranky after having been hooked up to a saline drip all night, but I am feeling better. So I went.

The race sucked. That's just what it is when you're lungs are doing 35% of what they should. OK, fine; I knew things would be like that. I actually had a pretty good first mile, had to walk most of miles 2 and 3, a decent 4th mile, and walked most of the last .97 miles. I did, however, finish strong. I couldn't have kept up the "strong finish" pace for any real length of time, but for a couple hundred yards, it was fine.

I turned around and waited for the next guy to cross the line. He was an overweight fellow and had been perspiring heavily. Yet I'd been struggling just to keep him in sight most of the race - he was walking/jogging, too - and only managed to pass him at the very end. I thanked him for leading me, even if he didn't know it. Turns out it was his very first race ever! I congratulated him on a job well done.

I also made a new friend before the race, a guy named Ed who's only been running for a little more than a year, having thrown in a lotto entry for the Marathon last year and had to start running when he got accepted. :) Well, it was nice to chat with him on the subway. I wonder how he did?

I did a 1:09:05, for a miserable 13:54/mile pace. Ugh. Placed 4525 out of 4597. Ugh. But believe it or not, this was a PR. This, my 56th race, was the first time I've ever run an 8K race.'s a PR, right?

So I took the bus on down and went to my pharmacy to pick up my blood-sugar control pills and more Benadryl. I didn't notice 'til I got home - very nearly until I'd swallowed one - that they were the wrong pills! These are someone elses medication. The pharmacist lady didn't check names, didn't check my ID, didn't check name against what I wrote in her log book. I failed to check because I assumed she'd get the right person. So ... well, I'll go back and exchange them this evening. I've been working this afternoon and need a short nap - then I'm off to a dinner party. 9-course, all-pie meal. For pie day, you know.

So what was I thinking as I ran a little and walked a lot? Well, it went along the lines of:
But it was gone, all gone! No turkey! No turkey sandwiches! No turkey salad! No turkey gravy! Turkey Hash! Turkey a la King! Or gallons of turkey soup! Gone, ALL GONE!
Except my litany was: No Easter Peeps! No chocolate pudding! No marshmallows, no angel food cake, no canned peaches! Gone! All gone!
This, of course, because I'm dwelling on my blood sugar numbers. I don't believe this is permanent. I think my system is out of whack because I've been sick and that my pancrease will get its act together soon enough. But I can't help but dwell on the possibility that I now permanently have a new dimension to my disease. Ugh.

I've turned on comments, by the way, but only to registered users. Somebody's going to have to get a Google account!

March 13, 2009


I may not get up and go to the 8K run tomorrow. I should - I most definitely should - but I'm so tired, I just want sleep. And getting to bib pickup by 8 means leaving the house at 7, which means getting up about 5.

Why two hours, when a shower is not in the plans? Is it because of therapy? Well, yes, I'll do my breathing treatments before I go, but in the past I've skipped that 'til after the run. So what's the deal then?

Because I have IV antibiotics to do. Yeah, that's right. I'm back on IVs again after merely two months. Having had the flu really did a number on me, I guess. The orals weren't cutting it. I saw the doc on Thursday for an unrelated reason, but we did PFTs and they were worse than last time. So she ordered up IVs. I was hoping to avoid the multiple sticks to get a line going, but there were no appointments for a PICC nurse available until Monday morning, so here comes Gemini, the Coram nurse to do a mid-line insertion. Bless her heart, she really tried and is very good at what she does, but both veins she tried were blocked by scarring and she couldn't get the line going. So I'm sitting here with another goddamn peripheral in my arm. And I'm going to have to get stuck again on Monday so they can place a PICC anyway!

The IV meds are, fortunately, the portable type - and that's going to help during these next two weeks, as I'm fairly busy. But right now, I'm hooked up to a liter of saline. Yeah, SALINE. And tethered to an IV pole, of course.

My blood work keeps coming back with unhappy results. Doc thinks the numbers might be skewed from my infection and recent dosage of Prednisone, but the fact is, two bloodworks in a row have come back with a blood glucose of over 300.'re supposing right. Might be diabetes. Might be temporary. Might be permanent. Who knows? We'll do more formal testing after a couple weeks of IVs, when the infection is not such a major factor. In the meantime, I should probably go to that run tomorrow, so that I can drop by my pharmacy after and pick up the pills doc has prescribed for controlling blood sugar for now.

This is killing me. It's just fucking killing me. I feel like I'm on a carnival ride and about to puke and all I can do is ride it out, because I have no control over the situtation.

If it does turn out I have diabetes, it will be the very best reason to up my running to six days a week. My great-uncle dealt with this his whole life; surely I can, too. If I have to.

Oh, OH! And to make matters WORSE, the subway was sheer hell today. I'm waiting for the train and as it's pulling up, some uppity chick pushes in front of me to get to the door first. Hey, brat! We're all going the same place; you don't have to be rude! I didn't say that, of course. THEN, next stop, even though this car is full and bulging at the seams, an ENTIRE Chinese (maybe Korean) family pushes their way onto the car, unfolded stroller and all. Then the parents don't bother trying to control the kids, who are jumping and crawling everywhere, stomping on my feet, etc. The baby is trying to climb out of the stroller, and instead of exerting a little discipline over the crew, the parents just stare off into space. THEN, the have the great idea of holding the baby. You'd think this would mean momma would fold the stroller up and create some room, but no, she starts piling the kids jackets into the stroller. THEN, as the doors open at Atlantic/Pacific, the baby GETS ITS HAND CAUGHT BETWEEN THE DOOR AND THE SIDE OF THE CAR where the door disappears. His little hand is being crushed and the parents don't even know what to do. The guy standing outside the car and trying to get on doesn't know what to do. nobody thinks to shout to the conductor that there's a baby's hand caught in the door and to CLOSE THE DOORS (to free his hand). They finally get the baby's hand free and he's wailing his head off, but apprently nothing's broken because two minutes later, he's got his hand on the door again. I know babies aren't terribly bright, but this one just doesn't LEARN. Neither do the parents, apparently. So he narrowly misses getting his hand caught AGAIN as we get to 36th street, where I'm getting off. But can I get off? NO! The asian family just stands there blocking the door, not even making an ATTEMPT at moving aside and a dozen of us are trying to exit the car. There's enough room on one side to squeek by and as people head for it, some old broad outside the car barges her way in. Way to go lady! Way to think about, oh, LETTING PEOPLE OFF FIRST, you selfish bag! As I finally struggled out of the car, I told her that. Didn't bother sticking around for a reply.

*snap* Nearly forgot: I'm supposed to be on 3 antibiotics, but the Vancomycin caused a reaction. I've had a reaction to it before, but it was just mild itching in the mouth and on my skin. This time, though, my mouth was burning, parts of my throat were starting to swell, and my lungs also had a reaction which made it terribly uncomfortable to breathe. I immediately took two Benadryl and discontinued the Vanco. We will try to restart it Monday when I get my PICC. I'll take Benadryl a half hour before the PICC insertion and we'll run the Vanco while at the clinic.

Today has not been the best of days. I would really like a do-over.

March 7, 2009

but I get up again

Cannot believe how warm it got. 67 degrees is what was saying as I left the house for a "long" run. I figured I might go around the park and come home, or maybe shorten it a bit and just go buy groceries after the park. I won't bore you with all the run/cough/walk details - same old, same old, frankly. But I did enjoy the weather, boggled at how crowded the park was, boggled at what kind of idiocy it takes to talk on the cell phone while riding a bike (and in traffic, too!), boggled at the warm, humid weather, boggled at all the little babies who are enjoying their very first spring, and generally got reminded how good life can be in general.

I feel like winter is rolling its security door down at last; or at least putting on its coat and waiting for spring to arrive and punch in. Awesome.

So, yeah, not the most athletic endeavor I've ever undertaken. But I noticed a LOT of other road warriors doing quite a bit of walking, too. As far as being out of shape, I'm in good company! :D

The water fountains were not on yet, so I'm glad I took some HEED with me, but I am concerned over some lingering hydration issues. It is possible the flu - and now the Prednisone - has put the whammy on my system. For the last week, I am waking up every single hour throughout the night, having to both pee and drink more. This is classic sign of diabetes, but I think it is just temporary and mostly caused by the Prednisone. At least, that's my hope. Drinking the HEED today reminded me that my doctor recommended drinking electrolyte drinks rather than plain water. It's getting hard to remember all that I'm supposed to do.

Of course, that may just be age. When I woke up about 4:30 last night and swung my legs out of bed, I remember thinking, "holy smoke, I'm getting close to 40!" I wasn't too dismayed by that, but it is the boundary where I'd decide against raising children. (Not that I'm going to do that without a partner.) Well... well. That's what happens at 4:30 in the morning, isn't it, when you're up for the fourth or fifth time that night? Thinking? So I get up to run today and I think I feel my age a little more than I did last month.

I was pretty focused on my lungs, though. Right now, with my water imbalance (drinking all the time, but have Zyvox-prompted diarrhea [sorry]), my lung mucous is super-thick. Thickest as I've ever dealt with. I'll be doubling up on my doses of hypertonic saline to try to force some water into my lungs. When I say thick, I mean it. Elmer's glue is runnier than my phlegm. Well-set pudding is runnier than my phlegm. My phlegm does not run down the side of a container. It hangs there, 'til it dries out. This is a huge problem. Imagine yourself trying to cough out blobs of...oh.... runny dough. It isn't easy; it tires me out quickly.

Sorry to be so gross. I've warned you before this blog could go this direction.

Let's end on a light note: The last half mile of my run was good! It was downhill, so that helped, and I hit walk signals all the way down 9th street from the park to the grocery. That continuous segment, dodging pedestrians and babies, felt pretty nice. It wasn't fast, but it was smooth and for just a second, I felt like a runner again. In fact, if its not too dramatic, I feel a little like the phoenix - I can feel the runner inside me working to be reborn from the ashes of my recent compound illnesses.

This is what we runners do, I suppose, and what we with CF do, too. We keep getting knocked on our ass by illness or injury, and we just keep getting up and getting back to it. We don't need some crazy Chumbawamba anthem to do it, either - but I have to admit it helps.'s on my ipod.

March 5, 2009

Bronx Half pics / pH probe

See this? Not too bad for February, eh? I look pretty good in this photo; probably early in the race. This was the Bronx Half.

the one below might have been at the finish, or about mile 8. We looped through this area twice.

This next one is definitely at the finish. If the clock doesn't give it away, look how bad I look. I was really struggling there.

Yeah, so yay me. And now I've lost all that fitness! I went for a short jog yesterday and thought I was going to die. It was more coughing and walking than it was running. Went about a mile and a half. I remember distinctly reaching a spot 2/3 of the way up the 2nd hill and deciding that would be it for the day; just try to make the run home a little better quality than the run to this point. The weather was nice, though, and the sidewalks around the cemetary are clear or just have salt. But what a rough bit of exercise. If I have time tomorrow, I'll try again. If nothing else, I intend to take all the time in the world Saturday and go out on my 6.7 mile loop. If I can get up to the top of the Slope and then down to the bottom of the park, near the lake, I'll be OK to finish the distance.
pH Probe:

Yeah, so... if the doctors say just one little wire and if the doctors say the nurse will numb your throat first before putting it in; then the doctors LIE. The FIRST probe was about as thick as a pencil and it had to do with some complicated extended measurements that had to be taken before the 24-hour probe was put in. I was like, WHAT?? You want me to do this TWICE? I mean, despite an empty stomach, I threw up all over the place while the nurse inserted the first probe. Okay, the second one wasn't as bad, but it wasn't exactly pleasant, either. Oh, and they did all this to me on no breakfast and NO COFFEE. Torture, I tells ya!

It kind of pulls at the throat and the recorder device has to remain attached all night and eating is positively a chore. I'm miserable right now. *sigh* What I do in the name of science. This is all part of a study of acid reflux in people w/ CF and how it affects the progress of their lung disease. First they have to determine if I HAVE acid reflux, hence this 24-hour test. Then, I'll be put on either Prevacid or a placebo for a year (neither the doctor nor I will know which one I'm on - this is called double-blind testing. Only the paperwork knows, as I'll be just another patient number X in the system.) Pros: helping the CF community in the constant drive for better understanding of this disease and better treatments; free acid reflux test. Cons: I think I'd rather have a colonoscopy.

P.S. Picture taken by Photo Booth in the glow of my awesome new monitor by the camera IN my awesome new monitor. Can't you just see the awesome?

March 2, 2009

baby, it's cold outside

Right now it takes so little to tire me out, I wonder when I'm going to get over this. March is beginning in the poorest way possible. Last night we got several inches of snow and the city decided it was high time to be paralyzed for the day. Bunch o' pussies, if you ask me. There's not even enough snow out there to safely make snow ice cream, but they canceled the public schools and FIT canceled classes, too. But *I* made it out of bed and got my steps and walk shoveled by 9, like the law says. (Neighbors still haven't shoveled - going to have to talk to Charlie, the owner of the building, about that for next winter, I think.) And I managed to get a few phone calls made and get to my doctor's appointment on time.

The new CF center (it has other purposes, too) is pretty nice looking. Needs some warmth and to have the edges worn off, but it's a nice layout. I think I finally met Ida, though I was in no mood to talk, as I was fighting my asthma pretty hard by the time I arrived.

Dr. DiMango didn't seem to need repeat PFTs. I didn't feel like I did well on the blow, but it told DiMango all she needed to know, I guess. I don't think she believed I actually had the flu, back when I talked to her a couple weeks ago before her vacation. But the results of that and the lung infection coming back are obvious.

So she's keeping me on cipro, putting me on Zyvox, and another short course of Prednisone. Here come the crazies. And, hopefully, the munchies. I lost a few pounds while I had the flu and I need to gain them back.

This wintry weather isn't all bad. I actually like snow itself - I just don't like the slush. I hope the sun comes out tomorrow, no matter how cold it is. I'm tired of grey skies.