Posts from the Past
No Thermoplasty for Steve

No Thermoplasty for Steve

[JP-Facebook-Like] Ive been getting a lot of email lately from people asking me if I'm gonna have the new clinical trials phase of this new procedure back in 2006, because my asthma was deemed “too severe” by the study investigators. People with ...

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#97 , misinformation and a virus from Hell

#97 , misinformation and a virus from Hell

[JP-Facebook-Like] Battle scars: 4 failed arterial line attempts and 12 failed IV attempts. I have no veins left and my radial arteries are so scarred up from previous insertions, that it's virtually impossible to get access unless they put a ...

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Propofol

Propofol

[JP-Facebook-Like] This is a picture of me on a ventilator last year during a severe asthma exacerbation ( what they call status asthmaticus). See the little IV bottle inside the blue rectangle with the milky looking stuff inside ? ...

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The not so glamorous side of being a severely asthmatic marathon walker

[JP-Facebook-Like] Yeah, I made it to Boston , Ive walked the Rome and Portland marathons a couple times, and yeah Ive been written up in lots of walk magazines and medical journals, but I think a lot of people who ...

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I look too Healthy

I look too Healthy

[JP-Facebook-Like] I get this all the time......... "You look so healthy" "You don't look like you have a disability" "You can walk farther then I can" "You look amazingly fit for someone with severe asthma" "You make ...

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Cracking the stems off of Primatine mist bottles.

Cracking the stems off of Primatine mist bottles.

[JP-Facebook-Like] I don't usually write about my childhood, because frankly, its too painful and because most of it is so outrageous, that a lot of people wouldn't believe it anyway. But just for kicks, I thought Id share one of my ...

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A quarter million puffs

A quarter million puffs

[JP-Facebook-Like] Care for some Albuterol? (Hey.....how did the primatine mist get in there?) I sometimes jokingly claim that Ive

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The Recuperative phases of a severe asthma exacerbation

[JP-Facebook-Like] Suffice it to say, I wasn't exactly a happy camper when I wrote that Dr W helped me get through this awful time by reassuring me that what anguish I was experiencing, was a normal response after suffering such ...

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Another piece of the asthma puzzle

Another piece of the asthma puzzle

[JP-Facebook-Like] Just got my lung biopsy report back from SARP study, are starting to paint a clearer picture of why my asthma is so severe. If there's any good news in all this, it's that there's a new drug ...

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Behind that finish line smile

Behind that finish line smile

[JP-Facebook-Like] Ok, so I look really strong in some of my finish line photos, but believe me.. looks can be very very deceiving. I'm an expert at hiding what I feel inside (I think most asthmatics are, to some degree.) ...

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The SARP experience

The SARP experience

[JP-Facebook-Like]Welcome to Pittsburgh, Pennsylvania for the

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My Lung Biopsy findings

My Lung Biopsy findings

Just got my lung biopsy report back from Dr Wenzel. Seems I have high levels of a type of cell called a mast cell. A “normal” (not cancer) cell that has long been seen in asthma patients. But, mine are ...

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Pre-Boston swag

Pre-Boston swag

Most of the marathon attire that Ive accumulated over the last 3 years usually ends up in a duffel bag crammed in the corner of my closet , never to be seen again. This jacket is gonna get worn a ...

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I'm a recovering  Albuter-holic

I'm a recovering Albuter-holic

Rick, the author of the Respiratory Therapy Cave , wrote to me the other day talking about what it was like growing up with severe asthma. One of the things he mentioned that I thought was kinda funny, ...

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Circa 1981

Circa 1981

Attending the recent taping of Barry Manilow's Music& Passion Special in Las Vegas and checking out all the sound production equipment and everything, made me flash back to a time when I was actually doing sound production for a living. ...

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The first few days are the worst

The first few days are the worst

First of all , thank you everyone! for all the nice comments. They mean a lot to me. My apologizes for the self pity thing in the previous post. I guess even us butch super hero ...

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The meeting

Before I begin, let me preface this post by saying that I haven't made up my mind as to whether I would even want lung transplant surgery, should it ever get to that point. I wanted however, to see ...

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Off to the Eternal city

Off to the Eternal city

(Piazza Navona) Well, after a close call with my lungs this weekend , in just a few hours and with a ton medications in tow, I'll be on a plane to Italy for the start of my Roman adventure. This ...

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Walk kind of walker are you?

Walk kind of walker are you?

Just as runners come in a variety of flavors (joggers, runners, sprinters, hurdlers, marathoners, ultramarathoners, etc.),not all walkers are alike. They also come in an assortment of flavors. ( Marciatori Racewalking Track... Circa 1900 ) (Italy's Ugo Frigerio wins the 10-kilometer ...

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I'm Hardcore Now

I'm Hardcore Now

GOT A NEW TATT !!! Hmmm...piercing sounds interesting too. Maybe next time.

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Reflecting

Reflecting

It's weird, but when I look at my marathon photos, it's almost like I'm looking at a stranger . It's as though someone else did this race for me and I just went along for the ride. ...

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The nights are the worse.

The nights are the worse.

Ever notice the time stamp on many of my blog entries? I usually compose and publish them in the early morning hours...sometimes way before dawn. You know why? Because I'm usually awake at 3 or 4 in ...

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Walking Expenses

Walking Expenses

Living on a fixed income, I have to track all of my expenses closely. I just figured out that in the last 6 months ,I spent a total of $1175.97 on walking related stuff . This includes fees ...

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My cat has a shoe fetish

My cat has a shoe fetish

This has been going on long before I started fitness walking..............

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Battle Scars......Electrode Gum

Battle Scars......Electrode Gum

Can anyone out there relate to this...... You've been home from the hospital for a few days now, and you still can't get all that electrode gum off your chest? It's like a black rubber ...

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Getting slower and fatter.

Small_snail_moves

For the past few months Ive been timing some my longer tempo walks (walking at race pace) and the results are pretty much what I feared…..I’m getting slower! In just 3 years Ive slowed almost 40 minutes in the half marathon distance. In 2006 for example, I PRd (personal record) the SF half marathon with a finish time of 2:52. Earlier this year in Rome, Italy it took me 3 hrs 28 minutes to cover the same exact distance. In both of these races, I was breathing well and felt that I was walking as fast as I could. So whats going on here?

Is it because I’m getting older? Am I not as physically fit? Is my lung function having an impact on my speed? Is it because I’m unable to racewalk as much?. Could it be the shoes Ive been wearing?
It’s probably all of the above, but it’s very discouraging because I’m training harder, but getting slower.

And if slowing down isn’t bad enough, my weight is way up. Ive gained 5 lbs in just 3 months. Today I weighed in at 151 lbs! That’s the most Ive weighed in 2 years. My normal weight is about 144lbs , so Ive really ballooned up. Gaining 5 or 6 pounds may not sound like a big deal, but for every pound I gain, it makes it that much harder for me to breath.

Unlike my slower walking speeds, I take full responsibility for the weight gain. Some of it is probably due to all the steroids, but the bulk of it is from all the sugar and fat Ive been eating lately. I’m definitely giving up the Hot Tamales and the Jelly Bellies!

The slow walking thing on the other hand, is going to be a tougher nut to crack. I think one of the things that’s contributing to my slowness , is that Ive lost the “race” mentality that I had when I first took up this sport. Ive become lazy on the course…. a casual leisure type walker if you will. After all, I’m not a runner and will never be fast enough to win a prize or take home a trophy, so there’s really no incentive for me to push myself hard…right? In fact the opposite is true. I do marathons because I love the challenge. I deliberately walk a little slower than I’m capable of, because subconsciously there’s always that fear ( and justifiably so), that if I push too hard, that I will burn my lungs out and not be able to finish the race at all. There’s a delicate balance I have to maintain of walking fast enough where I don’t bore myself to death, and not walking so fast that I throw myself into respiratory failure. It’s much more difficult than one would think. Let’s face it, walking or running 13 or 26 miles is difficult for everyone, even if you’re totally healthy. Ive just got to get a little bit of that competitive spirit back and not be so concerned about my breathing, but at the same time, not go crazy either. Just a little extra umphh on my part would probably make a heck of a difference in my finish times.

In addition to a mental tune -up, I’m also gonna start using my Garmin Forerunner again during my longer training walks. I think the instant feedback you get from these devices, forces you to keep your speed up.

It will be interesting to see how the slower and fatter me , does next weekend at the Rock&Roll half marathon.

SARP podcast

In case you didn’t get a chance to read the SARP‘s study on asthma titled “Lung Function in Adults with Stable but Severe asthma”, here’s a postcast where they interview Ronald Sorkness, a physiologist at the University of Wisconsin and the lead author of the study.

Dr Sorkness does a great job of explaining the basics of asthma as well as the research the SARP is doing, in trying to find out what makes the severe form of the disease different from the milder forms. This is the same SARP study that I will be participating in later this year. Listen here

Exercise&Fitness

Rock & Roll training complete

My training for the Ms Lizzy, will be doing this race. It’s always nice to have the support of your friends and fellow walker/runners at a fun event like this. My goal for this race, as with every race I do, is simply to finish it… AND… without making myself sick. Because of my declining [...]

Asthma

30 Things About My Invisible Illness

I rarely ever do these question and answer things , but some of my favorite asthmatics are doing it and it’s for a good cause…. so what the heck. 1. The illness I live with is: asthma 2. I was diagnosed with it : at the age of 2 3. But I had symptoms since: [...]

Asthma

My stress reliever

Yup, I’m a severe asthmatic and my stress reliever is a cat! How weird is that. I should do a survey to see how many severe asthmatics have cats!

Asthma

Im going to Pennsylvania to be studied.

SARP for short), is a collaborative research effort involving 4 different Universities, each adding their own research specialties to the mix. The basic goal of the SARP is to determine what make “severe” asthma different than the moderate of mild forms of the disease. The information they gain by studying people like me, is added [...]

Achievements

Im 20,089 days old !

I can’t believe it . Today I obtained the age of 55, and the official rank of “Senior Citizen”. I guess I should start acting my physical age huh? (That’s a scary thought). In my wildest dreams I never thought Id be around this long, but 13 marathons and 500 blog posts later…I’m still walkin, [...]

Asthma

Asthma and marathon training updates

It’s generally been a rough couple of months on the asthma front. This disease has been kicking my butt. Seems like Ive been sick more often than not. A couple weeks ago I started flaring again pretty severely, and as a result, had to up my prednisone to 50mg for a few days. The prednisone [...]

Asthma Symptoms

Darn…..and I thought I was unique!

Thought my fellow asthmatics might get a kick out of this. A few days ago I chatting with friend and famous asthma researcher ,backsliding.

Boston Marathon

Boston 2010

Yippe!!! Registration for the 2010 Boston marathon starts this week! I can’t wait to get my entry request in. I’ll be applying again for a slot in the mobility impaired division and I’m crossing my fingers that my 2009 finish time at Boston will be enough to qualify me for 2010. Hopefully I’ll find out [...]

Asthma Symptoms

Keeping the dust out.

One of the biggest problems of having asthma and living in a 120 year old Victorian house, is trying to keep the dust at bay. It’s not an easy task when you also have 3 indoor cats.. The fur collects everywhere. Now I know what you’re thinking…You’re an asthmatic and you have CATS? While my [...]

Asthma

Bronchial Thermoplasty promising?

Earlier this week I participated in an asthma focus group , put on by the Bronchial Thermoplasty equipment. I think there were 11 of us in the group, plus 3 silent observers. The severity of disease among the participants ran the gamut from people who had such severe steroid dependent asthma that they could barely [...]

Asthma

“mile”stones

Most recent Milestones: Milestone #4 Occurred yesterday. See the odometer above? Since beginning this blog in the summer of 2005, Ive walked just over 4,000 miles. That equates to an average of about 83 miles that Ive walked every single month, for 4 years in a row. Not bad when you consider that the average [...]

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Today, Friday , September 3rd, 2010

Symptoms: Breathing pretty good today.

Fitness: Walking a total of 13 miles today. 11 miles this morning in San Francisco and 2 miles this evening in Crockett.

Other News: Next race is only 4 weeks away!

FEV1:41% O2 SAT: ⇧ 98% Peak Flows:⇧ 87%

Categories

Ive managed to stay out of HERE


for

199
whole days

Approaching a record number of days that Ive been hospital -free!

I went Organic

and gave up
HFCS
82
days ago

Walked



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and

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