What A Glorious Day...

It was 36 degrees out and just beautiful out!!

I've been busy trying to get everything done so I could get my house refinanced. Pouring over garden seed catalogs...ever the green thumb ya know! Also, have wonderful news. The ICAA coordinator contacted me to get the ball rolling for Rusk county to start a grow-a-row program. I am so excited they have embraced it! It will send out such a positive message to our local community as well as surrounding communities as well! Think of a rain shower in spring and each one of us has an opportunity to be one of those little rain drops!

Living Well While Living With Uncertainty

I thought a lot about that today. I have had my share of bumps and bruises along the way in life. Some brought on by me some brought on by others( in the form of layoffs). I haven't posted because I promised not to be an Oscar the grouch! Monday morning I went into work while others who had as much as 25 - 40 years in got mandatory layoff. I sat in my car arriving 35 minutes early to work looking at the factory thinking about my co-workers. How many would be there...How many wouldn't be returning ever. I had bid on the position as a aluminum extrusion sawyer four years ago because it was level 4 and they always seemed to get more overtime than any other dept. It seemed so surreal. I have slightly less than 5 years in. Right now alpha1 pales in comparison to all of that!

How do you live well while living with uncertainty??? You make a choice to. You choose that your cup is half full. You direct your attention to someone or something else. As Kathy from work today said "It doesn't do you any good to worry about it!" It really does more good to focus on somebody or something else. You have the possibility of making someone elses life better and feeling good about yourself at the same time! I got a call from Michelle at Accredo today for a reorder and asked her to call me in a couple weeks. I explained what has happened and explained what I was trying to do about my low morale. She was understanding and said that was fine. I can't speak for the others that distribute augmentation therapy meds but, I suspect the same holds true....they really care about the patients!!!

Today, I choose to focus on Angel Flight Central and Grow-A-Row.

Furnace Filters

What is it they say "experience is a great teacher"....well, a recent experience drove that point home!

I had replaced furnace filter with the spare the previous owners had left. It was a filter that removed 8 different things instead of one that removed 11 different things. My eyes had been itching for several days. I decided to replace it with the higher filtration filter. Next morning when I woke up my eyes didn't itch and I had an easier time of breathing. It costs a couple bucks more than the lower filtration filter but, the difference it makes in quality of life is worth every penny!!

Also, micro fiber or leather covered furniture is better for your lungs than cloth covered furniture. They don't trap/hold things that are detrimental to your lungs. Likewise if you can do away with carpet & knick-knacks which hold dust and other nasty's that is also a worthy pursuit to protect your lungs.

Old McDonald Had a Farm...

Boy, do I ever feel like old McDonald. I still have a job but, will need to get up at ungodly o'clock in the morning. I thankfully didn't get the call from my supervisor saying "You have been given mandatory layoff." I got the call to show up for day shift in my normally determined area. I have run into a couple of people who work 2nd shift where I work around town and I swear they used the dartboard method for determining who got mandatory lay off. 52 took voluntary and 200 got mandatory.

Now like old McDonald I'm going to have to watch the weather till spring comes. Guess there's worse things that could happen! I am so thankful I have my farm. People always have to eat and I got the place to grow stuff. Plus, I ain't gonna go hungry. My Mother said to me once after I said I was hungry..."You're always hungry!" I am also thankful for my sister Mary who took the time to bake and cook with me at an early age when she was home on weekends from college. I started cooking at 7 and baking by myself when I was 9. I'm also thankful for having a frugal Father who grew up during the great depression and taught us all how to be resourceful.

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.