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

Thursday, April 30, 2009

It's Clear As Mud...


Being a hero was never on the top of my my list of things to do. Being respected and making things good or better than when I arrived has been. Today I realized what Noreen had told me 2 years ago....I am a hero.

Being a hero doesn't make you perfect it just makes you unusually courageous! I used to joke in college...."When God gave out courage I snuck up and took an extra helping!". It may or may not be true. It also makes you react to things I think sometimes...not as appropriately as one should. Other times most appropriately when one should!

I met up with a friend of mine tonight who has Barick's(sp?) disease. We talked about how we've cheated death. I talked about how I cheated disability. Those kind of things make you kinda iron willed. It can be to your benefit or not to your benefit.

Today as I notice my herodom...I realized how important it matter keep up the good fight! It's because of Mary Peirce's, Shirley Dennis's, Len Geiger's and Karen Erickson's that people begin to isn't over till....IT'S REALLY OVER!!

Most importantly I realized no matter what I could never stop being an alpha1 advocate. I think of the people that came before me and inspired me and realize I have an obligation I can never shirk.

Tuesday, April 28, 2009

I Feel Criminal...posting this

I am burned out on fundraising, alpha1 awareness raising and all the darned politics surrounding it! I still want to do the DD and the liver walk but, I actually want to take a year and just focus on doing some things for myself. Not only does all the above take effort but also it takes money to participate in events. Gas to drive there, food and lodging. I want to spend some of that money on maybe a roadtrip with other objective than to site see. I'd like to mentally recharge!

Back flips & Cartwheels!

That's what I felt like doing today after seeing Dr. Hogarth....he told me to keep doing what I'm doing. My lung function has increased 10% since I saw him last year. I tested out today at 51%.It is the most AWESOME news in the world to me!! He said when I get back in shape completely my lung function maynot increase but, what I am able to do with that lung function will.

Tuesday, April 21, 2009

Interview & Americas Grow A Row

Well, the interview is definitely on at WGEZ 1490 am out of Beloit, Wisconsin. Sometime between 8pm - 9:30pm April 26th, 2009. I am not nervous at the present time. I'm thinking about 1 - 2 hours before my stomachs going to flip flop but, on the other hand I may experience an enormous sense of calm. What ever way I react I know the most important thing I can do is to continue to help raise awareness about alpha1. We need more people properly diagnosed that can participate in research so we have more answers than we do now!

It seems the locals found Americas Grow A Row program too intimidating or felt it was least they recognize the need for food at the local food pantries and are doing some sort of vegetable growing program for those economically disadvantaged.

Wednesday, April 15, 2009

It's Official!

I am to be interviewed by the radio station dude in Beloit but, there must be no question/comment section as was said in the alpha-pack newsletter...or the association people would have responded with up to date info in regard to genetic COPD(alpha1). I had requested info about current legislative initiatives and alpha1 in regard to kids. Both I really have not kept up on. Guess I'll just tell them to subscribe to Alpha1toOne if there is a question/comment aspect during this interview.

Friday, April 10, 2009

Keep Your Fingers & Toes Crossed!

It looks real promising for me to do the radio call in talk show @ WGEZ in Beloit April 26th. I just am waiting on verification on the vacation day April 27th. Dr. Hogarth emailed saying an appointment to see him the 27th is doable! Please pray or send me some good vibes!!

Yeah...and hey I think I got the drafts in my greenhouse eliminated yesterday. At 10am this morning it was 100 degrees in there. I had to open the workshop door, open the greenhouse door into the workshop and turn on all the fans in the greenhouse!

Tuesday, April 7, 2009

April is....


No Barn Again...

At least not the way it is...maybe a reinvented barn. Although disappointed, not surprised. Tried to close up that north door on my greenhouse and realized I had to used blueboard or greenboard insulation in each door frame to truly cut out the draft. If that doesn't help it retain enough heat then I guess I'll break down and light up the gas heater in it. Almost all my garden stuff has arrived with the exception of some seeds from Victory Seeds.

Contractor comes by Sunday to work on stairway and replace door between kitchen & mud room. This house is sooo out of square I just don't want to mess with remodeling. The more I look at each room the more I want to leave the majority of it alone! Probably replace windows with Milgard windows within the next year. Replace the front entry door with newer more energy efficient door.

Monday, April 6, 2009

Trust & Addiction!

Hah! You thought this was serious...didn't you??? Some of it is actually but, some of it's not.

As far as setting up the trust to protect several assets I own....I spoke to my sister Johanna (who is on a tx list and has met/known more alphas than me) about whether I should get right on it or would it be ok to hold off a couple years.You see once it's done I can't change any of the trustees or by laws. We decided that although it IS somewhat risky so is the alternative. That being said I am going to put off completing it for 2 years. I will be sitting down with my lawyer to discuss how many different ways it can go and how by laws will change some things.

Now for the not so serious. I swore up n' down I would never become involved in the facebook community. We-e-e-ll, that all changed Friday when I got an email from a girl I graduated High school with. I was introduced to that crackhouse and now I'm addicted!! Who knows when I'll post something noteworthy here again! I even managed to connect with someone I had gone to college with in Oklahoma who I hadn't seen or talk to in 20 years. 20 YEARS!!! If I ever get back down to Oklahoma and see her I hope I survive that weekend. Kristi is way more energetic and wild than I have ever dreamed or attempted to be!!

Wednesday, April 1, 2009

Closing a Chapter With a Fresh Perspective

Well, the disaster response training was not as in depth as I expected but, it was highly elightening. There are ISO classes through FEMA or Homeland Security one can complete online that take a couple hours. Realistically most churches in the upper midwest are likely unprepared to serve in the event of a disaster as well as they could. There are also CERT classes one can take as well.

Although, I got next to no sleep that night I managed to get on the road by 3:30am. I arrived early to Evansville. We got my tractor loaded w/o a hitch. There was such a peace for me knowing all my tractors are in one place and out of the weather. It WAS the sweetest feeling!

I didn't get to Denny's to get the books but, he returned my phone calls & they are being shipped to me this week. Mr.Morgan showed up early. Inspite of some other snafust we made it on time & headway with the attorney over the trust. Some suggest that I am like a surrogate Mom to my nephew(not because his Mom is a bad Mother...I think it has more to do with he & I click better). Warning to all you parents(surrogate parents as well) out there....You think the teens are bad...WAIT TILL they hit their 20's!! Things will improve over time I simply need to be patient.

After I had dinner with Morgan I stopped in Evansville at the Night Owl. I wanted to see some of my old friends before I left. When I first walked in I was waiting to be served and there were a couple of regulars there and we were trying to decide who this one guy was. Was he Dale Holland??? We hadn't seen him in years there. I actually didn't see many who I expected to see but, who I saw was very unexpected. I saw a friend of mine's Dad(Dale) with his new wife and stopped to chat with them. He talked about how I wouldn't recognized Ty these days. He doesn't drink anymore(which is a very good thing). As we visited we tried to figureout when was the last time we had seen each other and he figured it had been at least 12yrs. The thing that struck me the most was not his response to my health but, his response to the fact I was no longer in business for myself.

You know sometimes a person forgets how much people believe or see in us!