The Top10 Things You Should Do If You Test Positive For Alpha1

  • Have A List Of Questions When You See a Doctor About Your Alpha1(If you try to remember the questions you want to ask you may forget half of them)
  • Learn To Breathe Effectively
  • Limit Or Eliminate Your Alcohol Consumption
  • Don't Be Afraid To Be Proactive About Your Alpha1
  • Get Plenty Of Rest(You will likely have a higher oxygenation level)
  • Avoid Sick People(You have a lower immune system than most people)
  • Drink Plenty Of Water
  • Eat Healthy/Avoid Processed Food(Carbonated beverages)
  • Start A Careful Exercise Program/Pulmonary Rehabilitation Program(Your muscles will become more efficient so they won't use as much oxygen and if you have surgery you will likely recover quicker as well)
  • Stop Smoking

Wednesday, December 31, 2008

The Road Not Taken...

That is the road I have chosen to take. I am going to use an attorney up here as opposed to one in southern Wisconsin. Rather than ramp up for social security/medicare ramp up for financial opportunity. Try to set myself up so I can afford Wisconsin High Risk Insurance and live well while living with alpha1.

Type in google: I Do Not Choose To Be The Common Man

It says it all.

Four Wheel Drive Trucks Rock....Firing Somebody

Can you tell we got dumped on today! Yah, I drove my truck to work...didn't even have to use 4wd.

Now that firing business. Frequently those of us who attend alpha1 retreats or ed days hear other doctors & nurses say "Don't treat your doctor like God! Sometimes you need to fire them and find a different one." I have learned sometimes the same holds true for attorneys. I am waiting to see if I should have held my cards closer to my chest. I emailed another estate planning attorney in the same law firm of my previous one. I also realise it IS the holidays.
Hopefully, I don't have to go searching for yet a different attorney. It seems not many specialize in estate planning, business & real estate law. Doesn't help I'm like that odd color crayon in the 128 crayon box. Croonieism bugs me!

Monday, December 29, 2008

FYI: Teeth & PSA's

Some doctors recommend that their alpha1 patients have their natural teeth removed when they have chronic lung infections. I myself am having several of mine removed. They can sometimes be great harbors for bacteria. There was a lady I had met at the Chicago Alpha1 Ed Day this last spring who I had seen the previous year at an alpha1 retreat. I stopped to visit her and commented that she looked different. Her teeth looked fine the year before. She went on to tell me she had all her teeth removed, got dentures and gained 37 pounds. She also said she no longer had chronic lung infections and was still on a transplant list.

PSA = public service announcments

The FCC requires radio & tv stations to air a certain number of psa's a month. I encourage you to contact the Alpha1 Foundation to get a copy of the three audio PSA's they have to distribute to your area radio stations. It doesn't mean they will play them but, if no one distributes an alpha1 PSA to them you are guaranteed they never will air one!

Shot In The Dark Method

I have been trying to get a lead on a different lawyer to handle my estate planning. That's why I had the frustration post. It's amazing how many people make assumptions about my situation. I shot an email to an attorney who specializes in business law, real estate law, estate planning and is a CPA that nobody recomended. In February I'll let you know how we make out. Morgan is going w/ me to my initial meeting.

Friday, December 26, 2008

For Those Looking From The Outside In

I have thought about this many times and get frustrated. When you are on the outside looking in at what another individual is experiencing as a result of a life threatening disorder/disease it can be invisible what they are truly feeling or thinking. Do you ignore it or do you confront the little known or unknown?

In the last 1.5 yrs my health issues have created an emotional roller coaster ride for me. When I was diagnosed w/ cancer my attention was full on. The perimeters were more clear. I now look at it as little more than a speed bump. With the alpha1 because so little is known about it and there are many contradictory reports about what is good/bad & right/wrong. You live in a state of constant uncertainty with it. Every alphas story is different. I exercise, ride bike & sail for three reasons:

1 - for better health

2 - to create awareness

3 - for mental health(when I am doing any of them I am focused on performance and good

form...not my worries or fears)

I don't have time to worry about my retirement or wasting my life pursueing somebody to file a lawsuit against because they didn't give me the perfect solution to my problems. I recognize I have imperfections of my own. By far my greatest fear is not dying BUT, the living(special moments) I might miss out on. My deepest desire is to maximize my life experiences in the amount of lifetime I am allotted inspite of my limitations that will continue to grow over time.

For those of you diagnosed w/ alpha1 make time for the things you are still able to do which you have said "Someday I'm going to _________." For those of you with a friend, co-worker or relative diagnosed with alpha1 make time to do what you thought "Someday I'm going to ______ for/with ________."

Thursday, December 25, 2008

I've Got Plans!

...I am commited to training again for the Dairyland Dare

I made promises to several people that I was going to set up my beloved bike on my fluid trainer by January 1, 2009 to do interval training on. I also extended my fitness membership for 3 months. To round things out I am going to include yoga & pilates workouts into my training. I think as a primer for cycling season I am going to do the 38 mile Rock 50/50 as well(if they still have it...the town it is held in is experiencing tremendous jobs losses).

In other bike news.....I have finally accepted....I'm a bike geek!

I got the recent Bicycling magazine in the mail and read it cover to cover in a day or two. I also confess I encountered a bad case of bike lust drooling over a $12,000 bike on the front cover that people could enter to win. They need to give away a less expensive bike so I could afford the tax as a result of winning it. I have finally realized that guy was right when he said "YOU WILL succomb to chamois butter!".