What An AMAZING Day!!

I received a envelope today from angel flight. I guess I expected maybe a half a dozen flyers and received two bundles in an envelope in my mailbox today! I thought to myself....WHAT AM I going to do with TWO BUNDLES of flyers???

I'll tell ya what....A WHOLE HECK OF A LOT!!!

I have one bundle left. In less than 8 hours one was gone and I had leads for a whole bunch of other people to tell about it. I am still sooo excited about this program!!

I guess I need to give the benefit of the doubt and say...I guess I shouldn't be surprised. Most of my friends are either public servants, business owners, business managers or sales people...even so....WOW!!

Quote: ....Something I Seem To Live By

"Our Lives Are Enriched By The Unexpected

People We Meet Along The Way"

Power steering, Water heaters and Enlightenment!

Shoot out the door to start my truck. Start my truck only to hear an odd clunk, clunk as the engine purrs right along. Pop the hood, get out of truck see oil of some kind on snow below. Dash back into cab turn truck off. Hope I can (drat) use some vacation so I can maintain perfect attendance at work. LUCK OUT!!! There went the power steering unit....but, any expense still beat brand new sticker shock 2.5 yrs ago.

Well, turned on the hot water in the kithen Sunday afternoon and no hot water. Being the genius I am....I went down to light the pilot and I discover it is more fancy(safer) than my Moms gas water heater was. Spent several minutes unsuccessfully to start the pilot light. "rots of ruck"(as my father once said to me)....called the plumbing & heating guy. Lucky enough to have no after hours charge but, foundout two things. One if I would have been....surprise surprise....more patient....I likely would not have inccured any charge....and secondly if I would have had green back dollar....it would have been even less!!

Met with the gentleman from SCORE Monday morning while my car was in the shop. I asked him why he participated in SCORE and also made the remark I thought the NAFTA agreement brought on some of our unemployment rate(ever the inquisitive one I am). He enlightented me on both, One he did it to give back(SCORE) and he had run a biz in Bangcok. He said it just was too expensive to produce in US but, did still contribute to things being lower cost for americans and american jobs.

I am on chapter 6 in Failing Forward. He explained Peachtree vs. Quickbooks is like comparing Ford to GM. Under normal conditions I would choose GM but, since my observation of GM lately is they are a sunk ship due big talk from union reps and poor management due to GM CEO being over paid for underpeformance. I guess I'll choose Quickbooks(Ford).

5 in 1

Well, Business Plan, Angel Flight, Donatelife, Unemployment & Mary Williams = 5 in 1.

My well I could have never fixed on my own. Not only was it froze in several places, a knuckle joint was toast and a bleeder valve was gone. As it was the well guy had to enlist his Dads assistance.

Things didn't work out with Donatelife however, I'm still very optomistic about www. angelflightcentral.org ! I have been unsuccessful in reaching a real person at unemployment since shortly after Christmas. I went so far as to get up around 7am to call them. In frustration at 7:30am I called republican representative Mary Williams. She said she had helped out another lady who had spent days on the phone trying to get in. She took down my info, asked me how things were going where I worked and said she would give the information to her staff when they came in at 8:30. They would contact me. I don't remember when they called but, Unemployment called me at 2:40pm this afternoon and got my initial claim processed! Now THAT'S GOV'T WORKING FOR ME!!

I finally was able to get to the library to print out the business plan outline the gentleman from SCORE sent me. I was hoping to develope a 5 year business plan and to me it seems more general. It's a start though!! It could evolve into a 5 yr business plan...I probably just need to be patient. I guess I'm a little too results oriented!

Enjoy!

Here is the link to a PBS show about alpha1: www.alpha1health.com/paf/alpha1_pbs.html

Oddly enough I know almost all of the people in it. My Pulmonologist is Dr. Hogarth, I have visited with Lorena & Len at different events but, never John Walsh. Not on purpose is it I haven't visited w/ John Walsh but, he is just so busy at alpha1 events I guess.

I'm Still In Shock...At least that's what I think one would call it!

My well is still froze but, my pump isn't fried....but, that's not the shocking fact. When my well pump guy talked to me I told him about my lungs. He said " That's that lung disease...right?" I said yes. He goes onto say "I know a guy who has it. He's 43 years old and he was supposed to be dead 3 weeks ago." I asked him to either give the guy my contact info or give mine to the guy. I will be 43 in February. What's the chances of this happening considering there are only 6,000 of us diagnosed in the USA??? My buddy Bent says "One in a bazzilion!" Most alphas I meet are in their 50's and 60's. WOW!!

All I can say is God has definitely been working some serious overtime in my life! I also heard from someone from SCORE today via email. I meet him on Friday. I told him I thought I needed a devils advocate. Even so...I am most definitely looking forward to it. I spoke to my friends that own the local cafe and they said there is something besides banks to look to for financing. They also surprised me when they said when they went for financing the finacers wanted a business plan but, they never really put one together. I don't think I would recommend that to anyone but, in their case it worked out ok. Without a business plan things can get unraveled or too hectic too fast. Some of this knowledge comes from personal experience but, some also comes from reading/hearing other peoples business blues stories. Also, I am in the midst of reading "Failing Forward". Yah, I know I said Paul Tatums "No Mans Land" then Maxwells "Failing Forward". I followed my instincts and switched things around...and so far I'm REALLY GLAD I did!!

My-T-Cold!

My woke up yesterday morning to a well with a frozen pipe. At work I heard all kinds of stories as to how cold it was going to get in the next two days. I got in my truck after work and the mirror read -16 degrees by the time I got to Ladysmith it read -13. Heat wave came to mind. Started driving down the road I live and it went back down to -16. Then I thought about it a few minutes....it really isn't that cold...we've had colder weather...in fact the first winter up here I remembered -20 below and wondering wether my truck would start. She just barely did but she was over 20 years old so, she was kinda geriatric!

I've spoken to leadership at Donatelife as well as a couple administration people at Angel Flight Central. I found all of them a pleasure to talk to. Both organizations seem very well organized and am looking forward to becoming more involved in promoting them. I believe each still gives me a platform to raise awareness about alpha1 but, also enables me to make a much broader....far reaching....difference for the good of mankind.

AngelFlightCentral

As the result of a conversation with my sister Johanna I asked on Noreens chatroom this evening about flight help if she tried to get listed at Loyola. Noreen came through in SPADES!! I learned of three non-profit organizations. After everyone left the chat room I went to look at their sites and have volunteered to help http://www.angelflightcentral.org/ . They are a part of angel charity network a 501(c) (3). I learned that sometimes it's not people needing organ tx or flying organs. It's sometimes sick kids to summer camps geared to them or just very sick people needing critical care they can only get far away.

Your an Anomaly...

That's what the first attorney said to me when I called him back after the other two attorneys wouldn't touch me with a ten foot pole! He went on to say he had hoped he could learn some new estate planning tactics from the thrid attorney. The third attorney's receptionist suggested the next time I contact a attorney that I not tell them about my alpha1.

Bill also went on to say "We are just not accustom to someone your age coming in to seek elder law counsel. If you think you can hang in there working for five years we might be able to do some preservation of assets." Elder law varies state to state so, what pertains to Wisconsin may not pertain to your state. I also learned a little more about LLC's and that I could change the arrangement of it at a later date if I saw fit. So, for the time being I am going to setup my farm as a sole proprietorship LLC. I spoke to both my sister Jane who is a sort of business management guru and my sister Johanna who has a masters in accounting(and has done accounting work in the past). They both say I should use Quickbooks rather than Peachtree. I plan to put a poll in the right column of the blog(towards the top) to get other opinions. I intend to leave it there for at least a month because not everybody views this blog on a regular basis!

I'm also going to learn more about a quit claim. Dad quit claimed the 70 to me and his lawyer really didn't explain exacctly how it worked. There is a federal five year look back at property transfers when you apply for I believe social security disability/medicare or SSI/medicaid. If you are single and a young symtomatic alpha like me with assets...please consider addressing how to protect your assets before you become too weak to work. Know how things work in your state.


There is an organization out there called:



A.C.C.E.S.S. (Advocating for Chronic Conditions, Entitlements, and Social Services)

They do not have a web site. Organizations only reference their information such as here: http://www.alpha1advocacy.org/support_disability.html

ACCESS Program4710 Eisenhower Blvd. Suite E-3Tampa, Florida 33634
1-888-700-7010



Their services are free!

FYI: Symtomatic vs. A Symtomatic & Flutter Valves

It occurred to me that these are all terms many alphas and their loved ones might not be famaliar with. Although, symtomatic & A symtomatic are genereric terms used in any number of medical conditions. I am going to use it as it pertains to alpha1.

Symtomatic = you tested positive for alpha1 and it is actively working away causing deteriaiton of health in the form of liver brochiectsis(sp?), elevated liver enzymes, drops in lung function

A Symtomatic = Well you've tested positive to alpha1. You could be MZ,SZ,ZZ, Nullnull. Your lung funtion is good. Your basically able to continue on skipping through life.

Unfortunately some have the misconception that because you are a "carrier" of alpha1 you will never be effected by it.

I. E. SZ usually are liver effected however I know one who is not but, is on a Transplant(TX) list for lungs.

It wasn't until I went to the third pulmonologist that I was shown & given a flutter valve AKA: Acapella. The flutter valve has reeds in it and you blow into it and they send vibrations back into your lungs that are supposed to help bring up trapped mucous. Mine has a knob on it to vary the vibration. I don't know how others are but, I can tell you they do help.

I am definitely not a dr and I reccomend if you have questions about these things discuss them with a doctor. If he or she doesn't want to answer your questions either ask another doctor or find a different doctor who will answer your "dumb questions". The only dumb thing is the thing you didn't ask.

Exercise, Marley & Me and Restlessness

Well, I finally exercised at OST. I am terribly out of shape and back to the weight I was before I saw Dr. Hogarth. It's embarassing. Then I think about the fact that I chose to attempt to remain rested this fall during the move to my farm. I can say for the first time in 3 - 5 years I had no trips to urgent care or emergency this fall due to sinus or lung issues. I also want to say that sometimes when I have started exercising my lungs feel tighter, then I start to have unconducive coughs but, after a few days I begin to have conducive coughs. My lungs then seem like they just start working better and better. It would help if I knew where my flutter valve is. This device helps bring junk up out of your lungs. I know it's here somewhere...it's just a matter of finding it. The same goes for some of my food storage tops and bottoms. I have some parts missing that shouldn't be missing. So, I suspect I have another box somewhere...most likely out in the garage!

I went to see Marley & Me at the local theatre. It struck me as I was watching the ending about how restless I have become. Between that and my last attorney conversation I decided to contact SCORE. Hopefully in the not too distant future I will be meeting with someone from SCORE. I used to know what it stood for and they no longer list it because I believe it has evolved quite a bit since the 1980's. I thought the tail end used to refer to Retired Exceutives. It's closely associated with SBA(Small Business Administration).

I will be posting less I believe...especially oscar the grouch type posts anyways!

I Do Not Choose To Be The Common Man

I do not choose to be a common man, it is my right to be uncommon if I can. I seek opportunity, not security. I do not wish to be a kept citizen, humbled and dulled by having the state look after me. I want to take the calculated risk, to dream and to build, to fail and to succeed. I refuse to barter incentive for a dole. I prefer the challenges of life to a guaranteed existence, the thrill of fulfillment to the stale calm of Utopia. I will not trade freedom for beneficence, nor dignity for a handout. It is my heritage to think and to act for myself, to enjoy the benefits of my creations, and to face the world boldly and say:

With God's help, this I have done.

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!

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.

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 ________."

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!".

The Best Laid Plans Of Mice and Men...

Can be changed. I haven't gotten things moved as quickly as anticipated but, I have remained resonably healthy. I am looking forward to starting back lifting weights and doing some cardio at the gym this coming week....Not to mention not getting up super early anymore!

I also am looking forward to taking a week vacation to Pensacola Florida hopefully toward the end of February 2009. A dear friend of mine from my college days(in Oklahoma) lives down there. It will be nice to be somewhere warm but, I'm certain she will challenge me to better myself in some way(she always has but, she has better luck face to face). She is definitely what John Maxwell refers to as a "lifter upper". This will be the first week long vacation I have taken in 24 years. I wonder what it will feel like?

During/after my return from Florida I may switch to a myspace blog vs. blogger. I'd like to add music and you tube type stuff to my blog.

Have a Great Week!

Give It Away...Pay It Forward

That's what I did with my T-day turkey. I gave my free Butterball premium turkey from work away to the local food pantry. Actually, I just feel like I passed it on and am quite glad!! I look forward to doing the same thing again next year because I believe I am making some families T-day better.

I have such a neat but, funny story to share. I had the very good fortune to grow up and spend a lot of time with a gentleman who was affectionately refered to by me as an Uncle. Both my grandfathers passed away before I was born so, I have no idea what one is like. When I was in my first year of college at RSC in Claremore, OK one of my Horseman's club buddies said one night "Well, Katie...he sounds like he was kinda a grandfather too you. That's how my grandfather is." He wasn't a blood Uncle but, in all the ways that matter he was an Uncle.

He used to tell me stories of WW II, the depression and the logging boom days(some Saturdays he would come down to the cabin and after lunch go for a walk w/ all of us showing where the different camps were years before). All of the times in our nations history were challenging times.

When I was in college at Eastern Oklahoma State College we had a campus food drive. I had heard they were going to give the food away to needy adult students attending Eastern. I remember looking at my cupboards and my frig thinking "my pantry is very well stocked and my frig has some meat & milk in it(back in those days meat was rare and powdered milk was the norm)." So, I gave 2 cans of soup to the food drive. I went to work at the stocker operation I worked on part-time and never thought I would be considered one of the needy students. I came back to my student apt to find a sign by Shari Potter(who was a hoot!) taped on my door that read:

"Katie... Come to Student Services...I Have A Surprise For You!!"


It was 4:30 and Shari had already left for the day and Marci said "Shari has gone for the day. It's sitting in her office with a sign on it. She is going to be so disappointed she wasn't here when you picked it up!" I will never forget the shock I felt when I saw those 2 boxes of food for me from the food drive!! I rarely cried in those days and I had tears well up in my eyes that day because I was so moved by the gesture.

That night I went a few doors down to a couple of older ladies who were sharing a college apt and discovered they too had received a couple of food drive boxes. I asked them what they got and could we trade. Well, we actually didn't trade...we pooled each others resources. I had the pie filling and they had the evaporated milk. We also pooled our money together to buy two pie crusts for pumpkin pie. They got one & I got one.

You also might like to know that my choice for for a b-day celebration is not cake BUT, pumpkin pie w/ REAL whip cream(made from scratch).