Yesterday was a huge day that really put wind in my sails like I haven’t had for a very long time. I’ll start with the bonus, because it’s just too exciting to keep quiet, even though most of you saw on Twitter and Facebook…
Fatboy now has a Manhattan-based PR firm representing him for media engagements, pharma and equipment company relations, and for things going on with this site (such as more product reviews ). “Excited” doesn’t come close to encompassing my elation about this big step. I am being booked for two video shoots coming up in the next few weeks and this is the time of year that companies are looking at their budget for next year, so my people are going to be pimping me hard to get things rolling for 2011 – especially trade conferences and endorsements of products that I can fully endorse and stand behind because I’ve used and benefited from them.
On to health news, I had my second follow-up with my ENT just 15 days post. She gave me the all clear to exercise and resume normal life, except “normal” is now “extraordinary” now that my infection is gone and my airways are opened up. You’re just not supposed to feel this good at nearly 32 after years of miserable health, but I am… and I’m going to make the most of it for all of us.
My good news about how I feel really made her day, but then she found 2 scar bands on my left side, which was an issue for years before, so she was fuming that it happened. She packed in extra numbing cotton for 10 minutes and came back to cut them. I need to go back in 10 days to see if they are still separated. If not, she will re-pack me, which neither one of us is happy about, but I honestly think she’s more upset at the turn my anatomy took on her than I am about having to be packed up again.
So is Fatboy! Beautiful and I started a couch to 5K program so I can prepare for our local 5K classic on February 26th. I think Beautiful thinks I’m crazy for wanting to do that because she’s asked me 3 times why I want to run the Gasparilla 5K . The answer is simple: I do things when “people say” I shouldn’t be able to. One year ago, I had a 24% FEV1 after catching a cold or something strange. I’ve worked up to nearly 40% as of my last clinic visit. I’ll be 32 in December. I’ve got every major symptom of CF due to my mutations – mutations that send people for transplants earlier than this.
I will run this 5K. I will complete it. I will finish with a time that I would have been proud of when I was 16 and breathing relatively happy in the 70%’s. Katharine in Baltimore ran one early this year. Josh in the Great Up North ran one recently. Fatboy shall also run one, not because others have, but because many others haven’t. Explain.
There is a tipping point for all things : good and bad. A point at which things take off or spiral down out of control. There is a minimum number of clinics and staff that have to be available in a city to control STD epidemics. There is a minimum number of farmers who have to adopt a new crop strain before others join in. The same holds true for technology. How many of us have Blu-Ray players? The number is increasing, but not as fast as flat screen TVs. Each new technology hits a tipping point before it’s taken as a standard. A standard of living and a standard of thinking.
I’m out to change the standard of thinking.
How many CFers are going about their lives getting thinner, seeing decreased PFTs, getting put on IVs more and more often just because “that’s how CF goes?” That ticks me off to no end – for two reasons.
Because I was one of those CFers less than a year ago. My PFTs were going up and down every 3-6 months with a slight downward slope heading into what I call Transplant Land. That’s where the doctors tell you every 3rd clinic that you need to get your numbers up or they are going to list you. I was on IVs so often before getting married that they had to put in a port because my arms couldn’t thread another PICC through my armpits. I was on IVs 3-4 times per year since then, too. Frustrating!
The medical community, as a whole (not speaking about individual doctors, nurses, or support staff), is what I’d consider to be a reactionary system. With the exception of the regular meds we are all on because of a proven track record of maintaining health better than ever before, we don’t get meds, devices, or treatments until something happens. Of course, there is a reason for that for infections, but I am of the opinion that everyone should be on the physio and diet of someone trying to get as fit as possible for transplant.
What if every CFer ate like I did to get a positive BMI and stop the PFT slide ? What if they got a handle on their infections, were honest about how they felt, and really wanted to reverse this slope because they finally knew it can be reversed? I didn’t know. Not until I read about success stories about gaining weight and increasing their PFTs from pitiful numbers up to what I would have been jealous of at 18.
If I can change the standard of thinking through reviewing new products and techniques, endorsing new products and telling my story, and public, motivational speaking, CF will suffer a huge blow, just like cassette tapes, VHS, and CRT monitors.
Fatboy now has a Manhattan-based PR firm representing him for media engagements, pharma and equipment company relations, and for things going on with this site (such as more product reviews ). “Excited” doesn’t come close to encompassing my elation about this big step. I am being booked for two video shoots coming up in the next few weeks and this is the time of year that companies are looking at their budget for next year, so my people are going to be pimping me hard to get things rolling for 2011 – especially trade conferences and endorsements of products that I can fully endorse and stand behind because I’ve used and benefited from them.
On to health news, I had my second follow-up with my ENT just 15 days post. She gave me the all clear to exercise and resume normal life, except “normal” is now “extraordinary” now that my infection is gone and my airways are opened up. You’re just not supposed to feel this good at nearly 32 after years of miserable health, but I am… and I’m going to make the most of it for all of us.
My good news about how I feel really made her day, but then she found 2 scar bands on my left side, which was an issue for years before, so she was fuming that it happened. She packed in extra numbing cotton for 10 minutes and came back to cut them. I need to go back in 10 days to see if they are still separated. If not, she will re-pack me, which neither one of us is happy about, but I honestly think she’s more upset at the turn my anatomy took on her than I am about having to be packed up again.
So is Fatboy! Beautiful and I started a couch to 5K program so I can prepare for our local 5K classic on February 26th. I think Beautiful thinks I’m crazy for wanting to do that because she’s asked me 3 times why I want to run the Gasparilla 5K . The answer is simple: I do things when “people say” I shouldn’t be able to. One year ago, I had a 24% FEV1 after catching a cold or something strange. I’ve worked up to nearly 40% as of my last clinic visit. I’ll be 32 in December. I’ve got every major symptom of CF due to my mutations – mutations that send people for transplants earlier than this.
I will run this 5K. I will complete it. I will finish with a time that I would have been proud of when I was 16 and breathing relatively happy in the 70%’s. Katharine in Baltimore ran one early this year. Josh in the Great Up North ran one recently. Fatboy shall also run one, not because others have, but because many others haven’t. Explain.
There is a tipping point for all things : good and bad. A point at which things take off or spiral down out of control. There is a minimum number of clinics and staff that have to be available in a city to control STD epidemics. There is a minimum number of farmers who have to adopt a new crop strain before others join in. The same holds true for technology. How many of us have Blu-Ray players? The number is increasing, but not as fast as flat screen TVs. Each new technology hits a tipping point before it’s taken as a standard. A standard of living and a standard of thinking.
I’m out to change the standard of thinking.
How many CFers are going about their lives getting thinner, seeing decreased PFTs, getting put on IVs more and more often just because “that’s how CF goes?” That ticks me off to no end – for two reasons.
Because I was one of those CFers less than a year ago. My PFTs were going up and down every 3-6 months with a slight downward slope heading into what I call Transplant Land. That’s where the doctors tell you every 3rd clinic that you need to get your numbers up or they are going to list you. I was on IVs so often before getting married that they had to put in a port because my arms couldn’t thread another PICC through my armpits. I was on IVs 3-4 times per year since then, too. Frustrating!
The medical community, as a whole (not speaking about individual doctors, nurses, or support staff), is what I’d consider to be a reactionary system. With the exception of the regular meds we are all on because of a proven track record of maintaining health better than ever before, we don’t get meds, devices, or treatments until something happens. Of course, there is a reason for that for infections, but I am of the opinion that everyone should be on the physio and diet of someone trying to get as fit as possible for transplant.
What if every CFer ate like I did to get a positive BMI and stop the PFT slide ? What if they got a handle on their infections, were honest about how they felt, and really wanted to reverse this slope because they finally knew it can be reversed? I didn’t know. Not until I read about success stories about gaining weight and increasing their PFTs from pitiful numbers up to what I would have been jealous of at 18.
If I can change the standard of thinking through reviewing new products and techniques, endorsing new products and telling my story, and public, motivational speaking, CF will suffer a huge blow, just like cassette tapes, VHS, and CRT monitors.