alpha1 victim to alpha1 advocate

Miss Busy

2011-11-26T14:24:00.001-06:00

I finally took the time to look over my blog and post. I learned I come by my busy nature honestly! I spoke to my fathers surviving sister a while back. She said "Your Dad was a BUSY, BUSY boy! We were lucky if he shoveled the walk and mowed the yard! He worked at the gas station and he worked at the grocery store next door. He he worked corn detasseling. At 16 he had 3 model T's and an open top sedan. By 17 he was the newspaper distributer in Monroe! He was forever taking a car a part in a barn and putting it back together." I'm the county Special Olympics Agency director, the special olympics bowling coach. I just picked up a part-time job working at the bowling alley. I still have my job at the window manufacturing company. They are moving all there wood window line to our facility. Needless to say I won't have to worry about having Friday afternoons off very soon. Trying a new type of infusion needle set called an autogard.

The Rambler, Midlife Insanity and a Wannabe Hippy?

2011-09-03T13:32:00.000-06:00

It's that time of year I'm out selling sweet corn....and I have time to think a lot between sweetcorn sales. I'm struggling like a lot of other Americans and reflecting. I've thought about my cut in pay, taking on a part-time job and the dreams that seem so far away. Last night while selling in front of the local cafe an antique winnebago named "Wanderer" turned in. A handsome young guy with a big smile on his face shouted out the window as he wheeled around my truck "Made a wrong turn!" followed right behind by a red late model rodeo. As he left the lot and I heard him give her some gas I thought....you want a motorhome...does it need to be so new? Remember how much fun you had with what you thought was your awful looking old beater car or truck? I realised...No, I don't need the new smell. I could gut it and personalize it! Then I thought about that cool looking 1968 Harley Sportster I'd seen on craigslist a few months ago. Could I have just as much fun, if not more fun cruising around on something like that? Yes, I could...and imagined all the good natured ribbing I could receive and the laughs as I say "But, it's paid for!!". Then today instead of catching up on my Inc magazine I grabbed my Cruising World magazine and started reading Fatty Goodlanders article. I realised I really need to look at my financial situation/aspirations differently. I thought about that neglected old Pearson Triton 28 sitting up at Corny. I realised to motivate myself to get that part-time job I need to look at it not only as a tool to eliminate debt but, to fulfill dreams and check more things off my bucket list! If I don't I am going against my long standing philosphy "You need to own the disease, not let it OWN YOUR LIFE!!!!"

Opportunity Knocks When You Least Expect It

2011-03-25T16:12:00.003-06:00

...Or so they say. I didn't make school board but, in a way I'm glad. It was a new experience for which I'm glad I was a participant in. It turned out to be a popularity contest but, it was no reflection of those most concerned about the students, community or tax payer. I think were I to have become a school board member I would have found it very frustrating.

I have been sick off n on. I even went so far as request an xray yesterday when I was into Urgent Care. I got a chance to see my xray's. it wasn't as scary as I expected! I was given an "updraft" (nebulizer treatment), a prescription for Prednisone and Ciprofloxacin for five days. It has had a dramatic effect on my ability to breathe. I hope after the snow melts I can start bicycling again. I really have thirst to bike up to Hayward some Saturday. I really believe that goal is well within my reach!

Soooo Busy!

2011-01-19T17:09:00.002-06:00

Well, I can no longer update via Opera on my droid. I updated it and now am unable to post. I have been very busy. I have been a part of the long term planning committee for our local k12 school system. I also find myself running for school board. A current school board member was after me for 6 months to do so. I did not know there were any openings. I stopped by she & her brothers saw shop and she got me going. I had people thank me for running....that was weird. I started out as a kinda reluctant candidate and now I guess I feel given my background I likely have the best background to represent the community, tax payer and the student. Four days after I filed papers 6 others filed. Two were refilers. So, I've got to make it through the primary and I might just manage it!!

Going on a mission trip to Biloxi, MS soon. It's surprising that there are still people displaced from there homes five years after the hurricanes.

Dads & Daughters

2010-10-01T10:07:00.004-06:00

I am seriously considering doing a mission trip to Biloxi,MS(actually it's Ocean Springs a not so seedy neighborhood). It is a joint project between many churches & Habitat For Humanity to help those who losed their homes to Hurricane Katrina and are still living in FEMA housing 5 yrs later. I had talked to the leader of our group about equipment needs. He said "We have found it is best to take your own hammer & tool belt." I thought about my carpentry toolbox my Dad gave me for Christmas when I was 7 yrs old. He was sick of me dumping his minature wood toolbox that he kept his plumbing washers in. His big carpenters toolbox was too heavy and big for me to carry around the house so I took to using his plumbing toolbox for a carpentry toolbox. I would walk around the house telling my Mom "I'm going to be a carpenter like Daddy someday." He convinced my sister Mary to paint my name on this green metal toolbox. He then put a small trim saw & a hammer in it. He said " Now Katie, you have your own carpenters toolbox. You don't need to be dumping my plumbing toolbox." It took him about 3 times of gently scolding me & I finally accepted it. I thought the other day..."Where is that hammer?". I have several claw hammers but, when I see THAT claw hammer or THAT trim saw...I always think of my Dad. I don't know if I'll take that hammer but, I know that everytime I hold a claw hammer I remember Father always being real clear that there was a certain way one holds the hammer when they swing.

In other news I have a whopper of a upper respiratory infection. I missed 2 days of work last week and got put on a Avelox/Prednisone combo. It knocked out a lot of the problem but, this week I have a rattling cough I can't shake. I don't know what I'll get put on next but, I do know I'll have to wait till next week to see a dr again. I hope I don't have to go in & out of drs offices like I did 3 yrs ago after attending Strictly Sail!

I Heart My Community!

2010-09-12T07:08:00.001-06:00

I'm sorry I missed the Des Moines event. It was sweet corn season and I had to "make hay when the sun shined". I have donated a portion of corn to some organization almost every sale day! It's a nice feeling....knowing you're helping somebody eat a little better.I think if more people could get beyond theirselves a little more often they would be amazed how life changing it would be!

Now that part about I heart my community....
In the last month I've gotten on the local school systems long term planning board as a result I have found myself attending more meetings. So much so I woke up this morning convinced it was Monday morning and I had over slept!! I've started attending township meetings. Next will ne village and city hall meetings. Our local grocery store in our village announced it was closing and I woke up to the fact theirs lots of other Glen's out there! That's what contributed to the involvement. I had a choice I could be sad or belly ache OR I could get involved and tried to be a part of a solution. The later made more sense to me. To the extent I met with the county economic development director for about an hr this last Wednesday.

I also am finding myself getting involved in Special Olympics in a much bigger way than I ever imagined. I'd always wanted to volunteer to help Special Olympics since high school. I contacted them about volunteering. They mentioned something about starting an agency. I had intended to be just a coach. I told them I'd give starting an agency consideration. Well....I will be going through orientation either this Friday night or Saturday morning just before the fall S.O. regional meeting. What is truely special about this is...my county has not had a Special Olympics program for several years! In my local school system alone there is 6 - 8 candidates to participate in Special Olympics. There are two other school systems in the county. Just imagine what it will mean to these children!! So, now I will not only be a coach but, an agency director as well. I've agreed to a lot of work! I have to take care of paperwork and fundraising. I have to arrange transportation, lodging, finding volunteers and keeping the kids up to date on physicals so that they can remain elgible to participate. So, now you know why I've been such a slacker! Oh, and one more thing...I'm trying to get a job as a wreath maker for some seasonal extra money.

Thought For The Day:

2010-07-03T11:40:00.002-06:00

Wring every bit out of life you can with whatever

life you've been given!!

Yippy Skippy....Hanging In There!

2010-06-25T15:09:00.002-06:00

I am not in so much pain. My system still isn't working right. The Aleve is helping. I'm paying the neighbor kids to do field work. I had to cancel my physical therapy appt because my augmentation therapy has yet to be paid by Shasta Administrations and I AM NOT paying for more medical bills I don't deserve!! I will also have to cancel my breast check up appts as well. GRRR!!! I also don't dare schedule that drs appt to get a referal for an MRI.

I am at 90 signatures for my classmate running for WI state treasurer. Pretty darn good job on my part I think. I'm going to try and get him some more. It's been very much a learning experience as I have asked people for their signatures. I may go up to Hayward this weekend to get more....time will tell.

Another Day....Another Dollar

2010-06-19T09:49:00.003-06:00

Been a long week but, it has slowly improved. On Monday my back caused me so much pain I actually wasn't sure I was going to make it out of bed. I haven't been that stiff since working tobacco harvest back in 91 and hadn't been that sore since I first blew out that disk in my lower back in 99. Bought a jar of blue goo...it has emu oil in it which helps the oinment go 4 layers deeper(I had heard that from an ER nurse years ago). Today was the first day I didn't grimice when I sat up in bed! Woo Hoo!!!! You would have thought I would have been in severe pain given what all I did yesterday! I mowed for about three hours on my hydrostatic Skag walk behind standing on the velke. Then I tilled for a couple hours followed by hand planting vine plants for a couple more hours. It's hard to believe that back pain messes up more than sleep. It can also mess with your appetite and digestion as well. Food is starting to taste good again.

I had even gone so far as call Mayo to see about having an MRI. It's interesting how they handled it vs. UW- Madison. They asked me many questions and said their doctors would review my case and let me know what they decide in 10 days( 2 weeks). The soonest I could see a dr was September 14th as a new patient. I called UW- Madison to see about getting an MRI and they directing me right to Neurology and told me I need see a primary dr to get an MRI requested for me. Although, I am better I am going to call back to see if it would still be advisable to get an MRI done. Talked to Karen about all this and she is in worse shape than me. She went on to say sometimes it takes forever for her to get up in the morning and she heads right to a hot shower to help loosen her up! She also told me an exercise to do and some names of some pain meds that relieve the pain but, don't make you drowsy. Thankfully I don't have to see a dr for pain. I don't like to take anymore meds than neccessary!

If I continue to improve I believe it is in my best interest to get my membership renewed @ OST and get back to working those back and ab muscles. That will help my back & LUNGS! I was always telling myself " Where will I find the time to squeeze that in!?"...now I realize " How much longer will it take me to the same tasks IF I don't exercise!?".

Jiminy Crickets....I'm Tired!

2010-06-14T15:49:00.002-06:00

Don't have a lot to say. I think about exercising but, haven't. I feel sooo tried & I really don't think I'm working that much. Some of my sweet corn I planted came up. It keeps raining so I can't get out in my field & plant. GRRRR! I think I'm pretty well done with Census. I volunteered to help @ the Eau Claire Triathalon. It was put together by members of my church to help orphans. That's how I wound up getting involved w/ that. I was SO surprised...while I was working the event participants were saying "thanks for volunteering!" as they ran by during the running portion. Starting to get caught up on my lawn in between rain showers.

SWAMPED!!!!

2010-05-11T15:52:00.002-06:00

Working census, cleaning up lawns and doin' the farmin' thing. My Droid has a lot pluses but, a few downfalls are it will not allow me to post on to my blog, it won't let me access my online billpay due to pop up blocker feature and it manuevers best on facebook via opera beta browser.

Have had a couple recent disappointments lately. Someone violently entered my cabin and buried an axe in the floor. I have had friends for years urge me to pack a handgun when I went back to my isolated cabin and I was resistant. When someone breaks down your locked door w/ an axe 1.2 miles back in the woods and the latch lands 10 - 12 ft from the door and buries the axe in the middle of that floor.....it steals some of your piece of mind. The county sheriffs dept is sending the axe to Madison to check for DNA evidence.

Things Are Looking Up! Seeing Endless Possibilities!!

2010-04-04T09:51:00.004-06:00

I got a droid but, it has it's limits! I. E. Like what I can post on the internet or rather where I can post on the internet. I'm caught up w/ all my property taxes. What a GREAT feeling that is!! I am also 2 months ahead of schedule on one of my three medical bills. I did in fact get called to do Census work....what really amazes me is of the 4 of us that got tested in December I was the ONLY one hired. My primary power of attorney keeps telling I have God's favor...I can't disagree with that the way things have played out the last three months. Sure feels like it!!

My vegetable seeds I started are doing well. I just passed CPR/First Aid this last Saturday. The gentleman co- teaching the class said if we liked what we were doing and want to go on to training for First Responder....the local fire departments would be thrilled to have more First Responders. Well, I'm gonna keep going and go for First Responder training. My local volunteer fire dept had two First responders. One had to move & one quit. I will be great to have the additional training since the cabin is 1.2 miles back in the woods. BUT, more importantly it will be a super opportunity to give back to my local community and help people!! I just can't express how blessed I feel!

Not Much To Say...Just An Update

2010-03-31T13:47:00.002-06:00

I have enjoyed the unseasonably warm weather and the week of voluntary layoff. I got a pleasant surprise On Monday when I picked up my tax stuff from my CPA. My tax refund was 4 times what I expected so I will be able to pay up all my taxes and a few other things on top of that. I went for a 2 mile walk the other and could not get over how out of shape I have become. I slept like a baby that night though!! I had the infusion from hell last night. 6 sticks. Blew a vein right after I switched from the soduim chloride flush to the Zamaira. Inspite of the the problems I was able to save the Zamaira which I had to use up in 3 hrs or $2160 would be lost. I finally was able to do what I call "mainline it". I stuck the needle in the vein we all usually have blood drawn from. I am considering getting a port.

Thought For The Day:

2010-03-20T12:56:00.002-06:00

No One Can Make You Feel Inferior Without Your Consent.

author: Eleanor Roosevelt

Snoopy Dance Ready!

2010-03-20T12:48:00.002-06:00

Or is that Snoopy hop ready???

Can hardly wait to get ground worked up, seeds started or plants planted. Excited to be getting certified to accept WIC vouchers. It's a program for pregnant women with children up to 5 years old. I will be able to help them eat healthier....that just ROCKS!! I also am going to do some other things different this year.

The lady I carpool w/ was talking to others at lunch and they presented the plan I sell plants to them rather than them buying elsewhere because they know I'll take better care of mine than folks @ Wal-Mart and they would be helping me out at the same time. Then I went "Hmm, that sounds cheaper than the local flea market or driving to the farmers market." I mentioned it to some of my friends and they were equally attracted to that notion. So, what started out as an idea I was toying with became a solidified plan!

I Wanna Curl Up In A Ball!

2010-03-15T15:26:00.002-06:00

Well, actually I've wanted to do that the last four days. I feel fine but, tired. I just can't seem to get caught up on sleep! That crazy old moon had been playing havoc w/ my sleeping the last few weeks. I did receive my Spiriva on Saturday....now if only my garden seeds would show up on my door step!

I Wish I May, I Wish I Might!

2010-03-13T11:51:00.002-06:00

I am waiting on the Spiriva I ordered on Monday. I usually have my ordered meds from Pennsylvania within 3 days. I called yesterday and they said it had shipped on Tuesday so, hopefully today they will arrive in the mailbox! I just saw an ad for Prevacid. It said it used to be a prescription med now it's an over the counter med. I'm thinking that's a good thing but, not completely sure. Thoroughly enjoying the warmer temperatures outside. Nice on the pocketbook and wonderful for the circulation. Now, just waiting on the ground to warm up. Looking forward to green grass...even if it means a lot of mowing around the farm. It's always great to be outside instead of cooped up inside!! Thrilled I found an authorized Kohler dealer who can & will work on my Skag "turf tiger". Their within 25 miles and considerably cheaper than previous mower repair shops! WOOT!

Thought Of The Day:

2010-03-06T14:04:00.002-06:00

Opportunity is Where You Make It.

Medical Bill Asstance Links:

2010-03-05T12:41:00.003-06:00

http://www.healthwellfoundation.org/

http://www.copays.org/

http://www.patientaccessnetwork.org/

http://www.cdfund.org/

In a November or December post I believe I have a list of medication assitance links.

Surprises, Setbacks & Simplicity

2010-02-27T11:24:00.008-06:00

Over the last few months I've had several surprises. My cabin property taxes went up 37% so they are almost 2x what my farm taxes are. I wound up doing my home improvements myself because the contractors either weren't available or wanted to be paided up front. While preparing my house for what I thought was going to be a reappraisal I discovered my palm pilot charger(I thought I'd accidently thrown it out when I moved)....when I found the charger it felt like Christmas or Fourth of July!! When I went in w/ up to date financial paperwork the loan officer & I were both flabbergasted! The new loan laws kicked in and the only ones they will help is the financial institutions that we helped bail out. My closing cost on a refi cashout went from $2717 wrapped into the loan to $5600 with $4600 up front. Then two weeks later the loan officer called to tell me they turned me down because of a satelite photo of my farmette(hobby farm) because they felt they couldn't get their money back out of it. At first I was stunned because I knew I had paid $10,000 under market value. My next reaction was "Don't bet against me!!"

So, having tired of all the back flips, handstands & cartwheels I had been doing for different lending institutions I hopped in my truck and went to talk to a banker friend of mine. He essentially said why not as you say hunker down & dig out. What was really frustrating though is I had made all these home improvements and if I hadn't my property taxes would be half paid! There's two ways to look at it though:

1) I would be in better shape financially if I hadn't made the improvements

2) Or since I made the home improvements and switched bedrooms I am sleeping better and my house looks nicer

So, I can't afford medication right now. The only things I'm focusing on is staying upper respiratory infection free, keeping up with my monthly bills, getting my taxes paid up, keeping a vehicle in good mechanical order & keeping my job.

I am looking forward to October 10th, 2010. It will be the day I will become medical bill free for the first time in 3 years. I first thought maybe go out for a fish fry or pizza to celebrate. Then thought..."Man, this is tooooo BIG an event to just eat out!" . I have decided to invite some friends over....grill some brats & have a big bon fire behind my barn!!

By July I will be caught up on taxes even on reduced hours. In a few weeks I'll receive my five yr 1 % bonus. March 3, 2010 I got lucky and won Glory B's popsicle stick drawing. $701!!! That will help me buy a 3 month supply of Spiriva & pay for some other things.

A few weeks ago I talked w/ the nurse who taught me how to do my own infusion. She got pretty upset when I told her what had been happening in December and that I couldn't pay for meds. She said the reason I was becoming hypo-glycemic was because my body was having to work so much harder to help my lungs work. I mean I knew a lot of times when your lung function gets down below 25% you body requires a lot more calories to function but, I didn't know up in the 50 % lung function group could have those same issues. I now eat whatever I want and I have had very few sugar low "crashes". My weight has stabilized. I'm pretty confident I'll never go back to eating two meals a day!

In an effort to lower my stress level. I turned down an opportunity to participate in a a-net focus group opportunity because I thought there was the possibility of it being too stressful on my body if the interview happened late in the day. It was in downtown Chicago and if it was @ 4pm or later it might take longer than the typical 6.5 hrs to get home. I also have dialed back on my involvement in regional political support. A band @ non-alcohol political fundraiser might draw the wrong crowd I was told. Gotta love some rural americans!

Just last week I called the Superior Census 2010 office to see when they were scheduling trianing. I was transfer to a second person and was encouraged! The lady said that my name came under the radar(because of my score in the 90 percentile) for a supervisor & crew positions but, there were floaters(someone who had turned down a higher position but, still wanted to be considered for a job) with higher scores. She said my score was in 90% was high. She said they were going to be hiring about 2,000 numerator positions soon.

Thought For The Day:

2010-02-11T15:52:00.002-06:00

"The cards we're dealt in life do not determine our future. It's how we handle the cards we're dealth that determines our future"

Rest In Peace.....Cindy Wilson

2010-02-02T17:36:00.003-06:00

For those of you who didn't have the opportunity to meet Cindy I am truly sorry. Chicagoland has lost a very preservering alpha1 support group leader & friend. When my sister called me Last Wednesday night to tell me the news I cried. I never would have bet against her. I first met her in April of 2007. She was spunky, caring & opinionated! In October of 2008 she received a single lung tx. She had shot up from 25 lung function to 75% lung function. She was on top of the world. She was experienced living in a way she hadn't in yrs. I had called her this fall because and email just wouldn't do! I just so happened her new lung was failing her and the next day she was to findout the verdict...if she would be permitted to be be relisted. She said to me "It is what it is." She was not sad. Just accepting that it could go either way. I just keep thinking about that James Taylor song "Fire & Rain". I've seen fire & I've seen rain. I've seen sunny days I thought would never end. I've seen lonely days when I could not find a friend but, I always thought I'd see you again. She was 53 yrs old.

update:

2010-01-28T14:12:00.002-06:00

I am still trying to get a handle on what is triggering certain things. At first I thought I was hypoglycemic and I may be. I was showing all the classic signs but, when I focused on that I really only had one really great day.

I also heard that taking cinnamin capsules help with metabolizing of sugar.

Then somebody threw out the idea..."Maybe it's because of too much caffeine. So, then I had a small can of decaf at the house and did a 1/2 caf/1/2decaf batch of coffee. Then I had two really good days in a row. I have also begun eating breakfast every morning for the first time in 25 yrs. I can't skip meals or I pay. I'm still not exercising till I get a handle on this but, I am sure I will resolve what cause me to have bad or so-so days. I am sleeping better since I switched rooms and my mind seems sharper to me. I am currently reading: "The Difference".

Explain Please....I'm Concerned

2010-01-04T13:04:00.002-06:00

I got a phone call from a friend in Chicago a day or so after my last post. This is an explanation of what happened.

I had been noticing I was forgetting things more and more often. I had been feeling exhausted. The week of the last post I had walked into work several mornings and became light headed & thought I was going to pass out. I also had walked across the parking lot over to the gas station. There is a snow bank that seperates the gas station from the employee parking lot at work. I came barreling down the other side, slowed down and wondered if I was going to pass out. The day before I last posted I had veiwed a safety dvd about the dangers of texting while driving based on a true event. Seven hrs later I had no remembered it right. I had sent an email to two biz executives(one happened to be my sister) and my primary health POA's husband who happens to be a traveling evangelist. Imagine my mortification when I discovered that the link I sent was for an adult entertainment site! I had txtd the right link to someone right after the safety mtg so I was then able to send the proper link. That was the deciding factor.

The next day the boss came around and said "The flu shots are being given in the large conference room. Your time is 12:32. Write that down somewhere so you won't forget Katie!" I realized also that if I didn't resolve these issues I would be a poor biz manager. I don't want to ever wait 8 yrs to get back to broke AGAIN! I also do not want to be another "Suzie's Super wing ding sauce"(that is not the real name of the product). It was produced in the county I live in and they were not prepared for the products demand to evolve. I want to be able to think "On the Fly" as I like to say.

I spoke to my alphanet coordinator last wk and she says "Your cognitive state is improved." I also realised when I was going through boxes and discovered my scale that I had lost a good bit of weight in the last 2 months. At first I thought it was off so, I called Marshfield Clinic and asked if I could use their scale to weigh myself. I needed the info for a alpha1 research project I was participating in. I discovered it was right. I then realised when I altered my monthly budget that by not eating any snacks from the vending machines, gas stations, etc.....I had in advertantly cut 600 -860 calories from my diet. That meant that I was only consuming about 900 - 1000 calories. According to the dietician @ Mayo I needed 1500 calories to function. I had my alphanet coordinator send an email to Dr. Sandhaus about it and he attributed to some other medical condition which I am not buying having been an athlete and watching wrestlers over the yrs drop weight in less than healthy ways to qualify for certain weight divisions.

I am feeling sharper. I'm down to a 32 waist which is likely a size 10 is my guess. I increased my caloric intake by 400 - 500 calories a day. I am still tired. By the end of today my old bedroom will be transformed into a fitness room so I will no longer have any excuse why I can't exercise. I'll have my Kurt Kinetic fluid trainer set up by the end of the week so I can prepare for biking this summer. I bought it 3 yrs ago and have never used it. I have taken my seasoning biz off the shelf a few times already. Somebody is working on the graphics. Although they are different than what I had in mind...it might just turnout way better!

This is my last post till the end of March........Stay Healthy & Stay Positive!!

Don't Feel Like The Lone Ranger...

2009-12-18T14:58:00.003-06:00

A series of things that has occurred over the last 3 weeks or so is leading me to take a sabbatical from the internet with the exception of banking and my diary entries for the Stepping Forward research project. I have some health issues I want to address. I'm going to use that time I would normally be on the net to exercise. It will help with those health issues that are concerning me. I have been working overtime, on home improvements inside & outside repair/cleaning projects(the in & out temp changes are hard on my lungs right now). I'm also not going to plan any bike treks or try to get on the fair commission.

I spoke to my health POA's Mother this last weekend and she said Karen is very concerned that I am over working myself. I know if I don't address the health matters Karen will catch a flight and I will address those health matters! She knows how to hold my feet to the fire. She has known me for close to 23 yrs now and she remembers when I tried to go to work w/ a 102 temp. At the time I was living in her house and she cut me off at the pass. She is a wonderful person whom you will meet if you go to the national Alpha1 convention in Orlando this June. Her family and I joke about me being "the third cub". Plan A is much preferable to plan B!!

If you are reading this blog for the first time, are newly diagnosed & need someone to communicate with....go to http://www.spiderspun.net/. That is Noreen James website and she loves to help other alphas. I don't intend to check my email for a while & I'm planning to shelf my seasoning business till the end of March at least.

A Capstone For Katie!

2009-12-07T16:23:00.002-06:00

I need to contact a local printer for label pricing for a biz I've wanted to start for awhile. I think I'm going to see if I can have an invitation dated for a little over 15 yrs from now.....A "Burn The Mortgage Party"!! My mortgage is a 30 yr mortgage.

Challenges, Changes & Dead Dreams(or not so dead dreams)!

2009-12-04T15:59:00.004-06:00

My income dropped $3000 this yr. It now stands at a gross wage of aproximately $25,000. My combined medical and medicine bills for the year are around $3,800. Now THAT'S challenging!! I guess God is just making me grow and stretch a little to make me better able to handle future challenges in life that lie ahead!

I have to make the needed improvements before the future mortgage company will consider refinancing. Some folks don't understand why...I understand quite well. There have been many homeowners that used their HE loans to survive rather than to do the home repairs/ improvements they said they would. There have been many home repo's and the lender is just protecting theirselves. I have even resorted to carpooling w/ a smoker to save a couple bucks(more like $20/wk). I am hoping the other person I heard of in SDL is open to carpooling & is a non-smoker. Unfortunately we do not live in a perfect world BUT, there is certainly much to hope for us & miracles happen every day. I know I have experienced a few in my lifetime!!

It has definitely become hand to mouth but, as I am reading Joel Osteens new book...the direct result is I continue to remind myself what efforts I went to in college so I could get my associates degree from EOSC in Wilburton. Bumming a ride once a month to grocery shop in McAllester, getting up at 3am after college dances to go collect beer cans & taking insurance off my truck so I was all paid up for the fall semester(which was the requirement for enrolling for spring semester classes.

I just have to figureout what to use as a "capstone" to keep my dreams alive. There is a story in the bible of a man named Zerubbabel who God instructed to build a temple & he came up against so much resistance from the people he quit. Then something like 10 or 20 yrs went by Zechariah came to deliver him a message from God that he was to go back to work on the temple. So to keep himself motivated he set out the capstone of the building.

My primary health POA's nephew & his wife were unable to have children the natural way. It was devastating to them but, one night he chose to go to Wal-Mart and buy baby things and place them in a basket(that was his capstone). I believe it was something like a little over a year and a half later they were able to adopt their first child. The agency told them it would take several years. Do you have a dead dream? What is your dead dream? What will you use for your "capstone"?

Thankful & Busy

2009-11-24T16:56:00.003-06:00

Thankful I got the option to volunteer to work in another dept today instead of not work. Thankful I got shifted to pre-paint instead of double hung. At where I work they encourage you to take home disposable safety equipment. I got access to a painting P-95 mask. I have been painting upstairs & have more to do. I had to slow down because of the fumes. The mask will help. It's funny....I didn't think the main bedroom was dingy colored till I was repainting it with the closest match I could find. I am using Color Place Crystal Blue. In contrast to the old color it is very bright & vibrant! I got to thinking while I was painting...when I get the dark blue berber carpet in I might just have to make that my bedroom instead of the smaller one I chose. The one I sleep in now is a beige ceiling & a kinda muddy brown colored walled. Who wouldn't want to wake up in a bright room!?

During the holidays I am going to move some studs around a closet & another space to make things more uniform. Yup, I've done this before. Did it w/ my Dad 32 yrs ago. Makes everything more pleasing to the eye. Gonna try and get some closets trimmed up as well. Looking forward to all the home improvements!!!

HAVE A HAPPY & SAFE THANKSGIVING!!

Prescription Assistance

2009-11-12T16:56:00.004-06:00

These are a few links:

http://www.pparx.org/ (888-477-2669)

http://www.rxassist.org/

http://www.raredisease.org/

Also, look at websites of companies who's drugs you are prescribed. They often offer financial assistance.

In another post I will list some medical bill financial assistance links...I haven't looked at them in a while so I don't remember which covers what. I was given them for when I was overwelmed w/ breast cancer medical bills. They cover more than that and sometimes we all have more than alpha1 bills to cope with!

If Wishes Were Fishes...

2009-11-10T17:07:00.002-06:00

I'd have one helluva fry! My refi is being pushed out till December because the contractor I was dealling with became too aggravating. I need to do certain things to my house due to the fact it will be a freddie mac or fanny mae loan. I can do most of it and compared to where the contractor would have bought supplies & the cost for his labor....I figure I'll save aproximately $700. I know some of you are experiencing major financial hardship right now. The next rainy day I will post several financial assistance links(I believe it's Thursday it's supposed to rain).

Oh! Hurray for my sister Johanna. Despite the fact she is on oxygen 24-7 she just shot her first deer last Thursday w/ a cross bow. AND it was an 8 point buck!!

Alpha1 Awareness Month

2009-11-03T17:34:00.002-06:00

Has recently been changed from May as it has been for many years....to the month of November as of this year.

Although, I think it is a poor choice especially when this is a colder month for fund raising events & publicity events for those of us in the northern states in the USA. I did cook up something that even if you are on oxygen you can do to help raise awareness about alpha1. Talk to your local library director or head librarian about their doing a showcase about alpha1/COPD just as they do during breast cancer awareness month. It is so easy! A healthy mind Healthy Body cd(make sure they limit viewing to in the library so others will always have the opportunity to veiw it. Then there is that Neil Schnactner(or is it Schnacter) book and we always have our various newsletters we get from alpha1 drug companies, other company's(accreddo, coram, centric) and alpha1 organizations as well.

I Am So Ready For The Refi Thing To Be Over!!

2009-10-27T16:30:00.002-06:00

Got the grapes done....sister Mary you need to help me use up my grapes next yr! There were too many that went to waste. Got apples I think I'm just gonna turn into apple butter. Back on 8's @ work but, at home still BUSY, BUSY, BUSY!!!

Don't You Think It's About Time....

2009-10-22T16:41:00.002-06:00

You posted another page on your blog?

Ok, Roger...Here ya go!

I'm busy working 9 hr days. I still have apples to turn into something. I have grapes that need to be turned into juice or jelly. I'm in the midst of trying to refi my home. I have just started another batch of wine. This time it's Wild Black Cherry and I tasted it as I transfered it and it taste dry. The lady at the wine shop said I could add conditioner when it's done doing it's thing in 2 - 3 months. It may taste better. I'm actually thinking of keeping half dry & half sweet. My next country wine will either be pumpkin or wild black berry.

Shoulda, Coulda, Woulda & What If?

2009-10-15T15:06:00.002-06:00

I told myself over 20 yrs ago I would never say those things to myself if I could possibly help it. We can all help it. Last week I realised I really dislike my job. What is a hourly laborer doing reading business books and civic mind not trying to prepare theirselves for a more rewarding job??? Well if it's meant to be...It's up to me!! I may be hamstrung by our economy but, that is it.

I've begun the refiance process for my farm and am looking to get some business classes under my belt starting next fall(always better to start in the fall than spring due to class staggering). I'm trying to get in touch w/ the county developement/tourism director to see about setting up a metric century bike trek. He's a busy guy!! I stopped by the courthouse today & a lady promised me she would pester him till he returned my call! He wears a lot of hats(including undertaking some of the county airport manager duties).

I'm very busy and things are still steady at work. I am continually glad I never applied @ the competing window plant for a job. Their employees have made so many concessions and still no stability in orders/hours.

I've Been Tired & Swamped!

2009-10-02T16:21:00.002-06:00

I am winding down from putting up the harvest sort of. I still have plenty pumpkins, grapes & apples to can. I have 3 grocery bags of summer squash to fry up w/ mushrooms, onions, tomatoes & Penzey's Fox Point seasoning to vac seal to throw in my poor stuffed chest freezer. We started the Stepping Forward research project a couple weeks ago. It will last 5 yrs I am told.

As putting is winding down pumpkin sales is winding up. I'm also in the midst of the process of refinancing my hobby farm. I finally discovered the back 10 acres of my farm last week. I found I have aproximately 3 - 4 more acres of field to utilize & I have 4 wild elderberry plants. Don't know what became of my wild plums...hopefully next yr will be a better yr. Also began taking a stab at home winemaking this week. Inspite of having a book and DVD on winemaking I still made mistakes(thankfully they weren't major and were correctable)!!

Sabatical/Silence Morphed....

2009-09-09T15:54:00.002-06:00

.....into there are not enough hours in the day(daylight) before the snow flies!! I was busy this last weekend selling sweet corn & managed to start getting caught up on my Inc. Magazine reading while waiting in between sales. LOL I still got another 1.5 issues to go though!! I also have been busy with insurance stuff...Not health....car/home and have a new insurance agent in a week. Still looking for part-time work. Planning to attempt to pass Medic First aid for adults as well as pediatric Medic First Aid in the next couple of months. It's been 13 yrs since I took First Aid/CPR and have wanted to take it again for a while. I could never get in a class because they were either offered nights or didn't have enough participants for a Saturday class. Even if I don't pass the CPR I will still be better able to help someone than if I didn't!

I start participating in the Stepping Forward research project very soon. I'm really excited to be involved in Alpha1 research! Only through research will more answers be found. This a 5 yr study Dr. "Sandy" is conducting. There are 500 people participating.

Thought of the day:

2009-09-02T15:52:00.001-06:00

Just A Little Hope Can Move Mountains & Make Miracles Happen!

I Up & Decided...

2009-08-26T14:43:00.002-06:00

I am going to take an extended sabbatical from Facebook, Blogspot and texting. I am perfectly healthy. I just decided this at work today. I went all day w/o my phone because I forgot it at home & didn't have time to drive back to get it. I have plenty of other things to do besides play on the net @ the library! Winter is coming!!

I don't know how long it will last could be 3 months, 6 months...who knows.

Still Cancer Free....Hurray!!

2009-08-19T15:02:00.002-06:00

I went to my 25th high school reunion Saturday night in J-ville. It got a little hot there and a couple of folks came near me with strong perfume or colgne(sp?) and my lungs tightened up. I left three hours into it. I had to use my rescue inhaler and as soon as my lungs start to open up...I was ready for a nap! It's funny how unsuspecting we are of how a simple thing like wearing perfume can effect another individuals breathing. It could be soap or hair spray, too. In my case it was perfume which as crazy as this sounds....I think of wearing perfume as a way of personal expression(at least till I realized it effected my lungs). It still think of it like a form of personal expression but, I think I can live with out it now.

I was so tired from the trek, reunion, late getting home Sunday & getting up @ 4am Monday I neglected to post about it. I had noticed a lump.....(and those of you who have been reading this blog since 2007 KNOW 7/19/2007 I had cancer surgery & got a "get out of jail free card" @ Mayo)....a few weeks ago and became very concerned about it last week. I called Mayo at 9am last Thursday to schedule an appt and they scheduled me for 8:15 am on Monday. The first dr said she was 95% sure it was a cyst but, they wouldn't know till they did the Mammogram & ultra sound. I had four cysts total and had one aspirated.

I also just read my last post and discovered...Katie, can't spell either in addition to being untrustworthy in bicycle shops & bookstores.

The Weekend Was Survived!

2009-08-17T09:12:00.002-06:00

I only made it 15.6 miles on the Dairyland Dare. I began to experience a headache off and on. Then it became a persistent headache. Enlight on my neice & nephews losing an uncle on their fathers side to heat stroke suffered on a roofing job earlier this summer I decided there was more honor in sagging! I didn't have to peel myself off the lawn @ Harris Park. I did hydrate enough but, am wondering if I have to over fuel myself due to alpha1 an having just a little over half the use of my lungs??? They say when you have alpha1 as your disease progresses your body needs more energy to do the things you do. In essence more energy than people with healthy lungs. I've heard when we bicycle for extended periods of time we burn at least 1200 calories an hour. We need to drink at least 24 oz of water and hour on extended rides as well. If your thirsty it's already too late because you are already dehydrated!

Dairyland Dare 2009

2009-08-10T15:38:00.002-06:00

I will be participating...how much I complete well...time will tell. Underprepared but, my oldest sister wanted me to participate in the worst way. Then onto Bail's Watering Hole. Don't know how long it will take me to peel myself off the lawn after participating in the Dairyland Dare. Got good easy fuel and will be getting a good nights sleep unlike last year.

Can't Be Trusted In Bookstores Either!!

2009-08-01T12:19:00.002-06:00

When I had gone to bike shop a couple weekends ago I decided since I was so close to Eau Claire I head to Olive Garden for a late lunch. Then I decided well I'll stop at Borders bookstore and look at the sailing magazines. Well...I didn't get any sailing magazines...I instead got a copy of "Success" magazine and Joel Osteen's "Good, Better, Blessed" cd set. As for the bike shop technically I stayed under $50 sort of. I bought $28 worth of stuff BUT, I ordered $83 of other stuff I picked up last weekend. I don't care for EFX electrolyte powder or whatever it was called. It was lemon-lime flavored but, oh well. I really like the Hammer: gel(unflavored), gelbot & perpetuem(unflavored). The unflavored doesn't make a person want to gag! I highly doubt I will be healthy enough to participate in the Dairyland Dare but, I'm going to do my best to at least attend the event!

Are You An Overcomer???

2009-07-31T11:46:00.005-06:00

I believe I am! I just got some $930 unexpected medical bills this week. I was sure last night I would not be able to attend my 25th high school class reunion and the 2009 Dairyland Dare. I spoke to Noreen this morning(alpha pack pres) and she said they could help with the cost of the room & gas cost for the Dairyland Dare. I have been listening to some Joel Osteen cd's in my car as I never have time to read right now....it sure is helping me cope with all the challenges I am experiencing right now. I have convinced myself I will emerge next spring leaner finacially as well as physically and sharper mentally. I have eliminated my landline & internet so am limited to the library. There is someone jabbering in the background making it hard for me to concentrate on formulating an intelligent post & I keep hearing there is a waiting list for the computers....so I will pursue a more informational post another day! I'll make it...Overcomer Part II!

Forget that second post...I'm at another public library...SO GLAD...there are 2 library's in this county I can use!! Luv the edit feature on blogspot, too!

I was put on a z-pack(azithromycin) two 250 mg pills first day and one 250mg pill remaining 4 days and stays in system for 10 days. Went to urgent care in Ladysmith. Pretty sad when the doc I saw there says..."You don't want to have to go to emergency here....you'll wait 4 hrs!" It IS true!! I got hit by a piece of firewood at the cabin accidently when I was 4yrs old. It took 4 hrs before I got taken care of. My parents were furious! However, there is a positive outcome to urgent care...the doctor & nurse actually knew about alpha1...How great is that??? I think it's awesome!!!!

Back to the overcomer bit. Last night after work I stopped by two lending institutions to investigate my refinancing options at each of them. I learned I can't get refinanced as well as orignally thought but, it is still better than last years original mortgage. My cars too old to refinance @ a better rate. I had been looking forward to being down to one medical bill but, I remember when the combined bills were $4000 + two years ago. Now the combined total is only $2100. It is a step forward. I have my fishing gear & hunting gear and I reside in hunting & fishing heaven where I now live!! I have my hunters safety cert that my Dad insisted on. I have a garden, an orchard and I know how to can!

I have piles of books to read over the winter. Tip top of that list is "How The Memory Works" followed by several algebra books. I've always struggled with math and I'm bound & determined I will best that bugger!! I may not have an OST membership this winter but, I do have my bike, my Kurt Kinetic fluid trainer, my Spinervals DVD's, my yoga mat, my pilates & yoga dvd's. I am planning when I get over this upper respiratory infection to begin bicycling the 10.9 miles to and from East Mart during the week to save gas costs to work. If I really get brave I'll pedal to & fro from the Tony Depot during the week....it's 16 miles. Where there is a will there is a way.

I have vivid memories of the lengths I went to to get my associates degree from EOSC yrs ago....the last few days seem reminiscint of them. I've recalculated & recalculated debts vs. income and asked myself how do I juggled them around. I am sure that I don't have to remove insurance from anything like I did in college though...WHEW!! It was all SO WORTH IT back then and it's all worth it now!! Back then I had to remove my liability ins from my truck to pay off the fall semester bill so I could enroll for the spring semester. I bummed a ride to McAlester once a month for groceries and whatever I got then was what I had to live off of the entire month. Why is it our greatest memories come from times we were poorest?!

Thought For The Day:

2009-07-21T19:14:00.001-06:00

"Even during our darkest hour there is

hope & opportunity"

Off To Spend!

2009-07-18T12:03:00.002-06:00

Didn't know what else to type for a heading. Using library to post. Not much cpu time left today. Got an email from a newly diagnosed Alpha. It's funny...I get burned out on being an alpha1 advocate sometimes but, then I'll get contacted by someone who is looking for knowledge & encouragement and I forget my burned out feeling. I remember what it felt like when it first hit me. The next thing ya know I just so want to help them have hope as well as the ability to regain their equilibrium!

I think I might have a cold. I have been working 9hr days. My days have begun at 4am and ended sometime around 9 or 10 pm. My field of dreams is shaping up though as a result. I have been coming home from work and driving right out to the field to work. I did sleep in today because I have been so exhausted to the point on Tuesday I arrived at work late. I destroyed my perfect attendance record I had going for 1.5 yrs. Makes me mad at myself! Going to Spring Street Sports to buy Hammer gel/Perpetuem products...Hopefully I can keep it under $50. It usually winds up being $125 +. I am a bike geek. I can not be trusted in a bicycle store!!

Being Active In The Alpha1 Community...

2009-07-12T12:36:00.002-06:00

Has many pluses!! I just got offered a placed to stay for free when I spend the weekend in Chicago in August. That just rocks!! There are also other benefits as well. A social outlet, an opportunity to share what each other knows/has learned about alpha1 and how to fight it. Lovin' the rain! Corn & pumpkins are doing awesome! Can hardly wait for PYO season in August!!!

For Every Problem.....

2009-07-09T22:14:00.003-06:00

There are many solutions. I'm in the middle of the book "The Difference Maker". In fact, I'm in a chapter addressing big people overcome big problems. I thought about the fact was I a big person or a small person ad was my attitude right about the Hallie Rath event.

My conclusions was....Maybe Not : (

So, I started revaluating how I looked at it and began looking at it from a different perspective. The funny thing is we could & in some cases should use this kind of thinking when dealing with alpha1.

In other news. I believe my oldest sister & I are going to take a week long road trip to Virginia in early September. I ave not been there in 24 years. I was looking online at tourism info & I didn't recall just how gorgeous it was. WOW!!

Hallie Rath event...

2009-07-05T14:26:00.003-06:00

I will not be donating funds or attending the event. They have put in place a dress code. In addition to that I have issues with the UW's attitude towards alphas. They didn't always have this attitude. Henry Eckert who I have refered to in previous posts and done a couple different events with was a recipient of a bi-lateral lung transplant from the UW & Dr. Love was his tx surgeon. Sorry to disappoint folks!

On the up side...sweet corn season should be finished on my farm and instead I should be able to take the entire weekend off. I am thinking spend the weekend in Chicago & attend Cindy Wilson's alpha1 support group mtg...if I can figureout how to get where it is on time!! Then Field's, Shedd's, Borders down by water tower place(I LOVE that bookstore!!) and who knows what else!

Klondike Monster...

2009-06-29T20:43:00.008-06:00

....Actually Klondike hill. Is thee single most nastiest hill I have ever seen!! I think it could make me cry before I even got half way up one side!

I said I wouldn't post but, I had a bad nights sleep last night so, I took it easy tonight. It got real humid during the middle of the night and I woke up with difficulty breathing.

Anyway....Klondike Hill....I had never been able to find over off of hwy 48 by Rice Lake. I had my friend Steiner give me a ride over to pick up my truck. Along the way I talked about training for the Dairyland Dare. He said when he drove gas truck "We were told we weren't to go down Klondike Hill.". He then offered to show me where it was over off of 19th street by Bargain Bills. It's over a mile long. We figured there was a 4 mile square I could hill train on. I had discovered a hill I thought would be good to train on Sunday over by Canton on 23rd st. I may just have a fighting chance at having what it takes to complete the DD metric century!

Exhibit # 1

Exhibit #2

Nuff Said!!

Where's Katie???

2009-06-28T10:31:00.003-06:00

For the last month and a half my day has begun at 5am and ended at around 10pm. By that time I am completely wiped out. I have either been working at my job that provides me with a weekly paycheck or tilling, planting, watering, weeding garden or raking & mowing lawn. I did take off yesterday to attend a graduation party in Chippewa Falls. My cousin brought his son up from Ohio to have a grad party with relatives.

I expect to stay busy like this till November with the farm & cabin. I went so far as to send an email to my sister (who has a cabin up here) to come over here and raid my raspberry patch & personal gardens since I don't believe I'll have time enough to can jam or veggies. I'm sure if our other sister from CA lived closer she would love to have the opportunity to raid my gardens....not to mention my greenhouse in spring!

I don't anticipate posting a lot. I plan to do the Dairyland Dare and hope to make it to the Hailey Rath event in Beloit the following weekend (http://haileyrath5k.org/). Do I ever wish I could curl up in a ball today. I can hardly wait till I get to sleep in an entire weekend!!

Colds & Exercise

2009-06-07T17:10:00.002-06:00

Colds at anytime when you are a symtomatic ZZ are never welcome. During summer I think they are less welcome. They are so hard to get over for anyone during summer. I think I might have one....I feel under the weather but, I am hoping it's just because of the cold and humidity. We had much needed rain yesterday. My lungs feel somewhat tight. You would think since I infused Friday at noon I would be immune to a cold. Grr!! Time will tell pollen in the air doesn't help either!

Exercise...well, that's what I'm about to go do at OST. Even when you are sick you should exercise BUT, be careful. Don't over do it!! If your lungs are congested sometimes exercise helps loosen up mucus to help bring it up out of the lungs but, so does an accapella valve(flutter valve).

How Do You Hug Someone For Possibly The Very Last Time?

2009-06-06T07:43:00.003-06:00

That was a recent post on Facebook by a dear friend of mine. The person he was refering to was his grandma. She IS the sweetest person I have EVER met!!! In 1995 I spent Christmas with them. I had stepped out of the family picture. She said : "You're like a second daughter to us. You have to be in the picture!" I don't have a picture of it but, I will never forget that day! There a million other moments, too!

I've never seen her angry. She always has spoken cheerfully. She has a wonderful sense of humor & loves to have fun. She's always been very affectionate. She always says something encouraging to you when she talks to you. She is the most amazing person! I know I talked about Noreen who passed away from luekemia a few years ago and how I would like to have her grace while aging not so gracefully. I'd also like to have Barbara's cheerful and patient disposition as well.

How do you hug someone for possibly the very last time???

I guess the very best you can...enjoy the feeling...make sure they know they have special qualities that you hold dear....not everybody gets that chance...embrace the moment. As a couple of my high school classmates have told me to help me keep things in perspective....Katie, I could walk outside and be hit by a car. We all need to make the most of life where we're at right now.

Can't Wait To Get Back To Work!!

2009-06-05T11:47:00.006-06:00

I am ever so sore. A hot shower holds a close second to a calgon take me away bath I'm discovering!

Those gas prices I hear will reach $3.50/gallon by the end of July. Definitely got to get into that bicycling part of the way to and from work. Plus, if I'll get that needed 20 miles a day exercise needed for training for the DD.

I did my IV(infusion) today. I got a good first stick! Yeah!!!

I had a first though!! My saf-t-intima partially gave out by the y part of it?! I was very surprised!! Nah, I'm not scared of it happening again....but, it was aggravating. I got a good second stick w/ no complications the second time around!

I think I'm gonna refocus next yr on just sweet corn & fall decorations. There is only just so much Katie to go around. Plus, I won't be so tied down! LOL...I say that this year but, that could change. For 3 years now I've said "I'm not going to mow lawns next year." Then the next year rolls around and I say..."Well, it'll be that much more money in the pot!"

Still very busy...

2009-06-02T07:06:00.002-06:00

I am quite tired & sore. I seem to use my facebook acct now more than ever. I did consider switching from home internet/cell phone to a blackberry but, I still couldn't justify it. I keep reading how facebook has become quite a good business tool. I expect I will set up a facebook acct for Rock Bottom Farm. I've learned that the things I want to do as far as marketing product are getting folks around here pretty excited(in a good way)! I wasn't sure as I was cooking them up....I may not even do the farmers market. I may just sell it here at the farm and make the occasional special delivery to the private resort/ five star resturant chefs. I will be soooo glad when this week is over. In the next couple weeks I plan to build a summer chicken coop for my apple orchard. If it rains this week that will be my work on tractors day. I think it's time I figureout where my blue goo is for arthritic bod!

It's too bad about the U.S. Gov't blocking the sale of Talecris to CSL. I honestly hope we get better leadership during the next presidential term. I also found it laughable a few weeks ago when the FDC decided......Cheerios is a drug due to advertising that's been in place for over 2 yrs according to some genius in the FDC. I should have bought one of those Cheerios boxes for collector purposes!!

No Biggest Loser....My Bad!

2009-06-01T11:38:00.002-06:00

I got up early with good intentions. Got busy with the my greenhouse plants. Then I was busy over at Stevens Lumber yard looking into windows. Then I came home & got busy with removing the OSB from my truck. I just noticed the time....I had a 3 hr window to get weighed in today 9am - 12pm. Oh, well....I can still get down to 145 without participating in OST's Biggest Loser type program.

Gonna go get busy mowing paying lawns!

The Biggest Loser...

2009-05-29T18:24:00.002-06:00

They are having one of those kinda programs @ OST(the place where I do cardio & weight lifting). I didn't do it last year but, I am able to this year. I need to get down to 145 but, I'd love to get down to 143. I know several years ago when I lost weight the wrong way for a wedding(before I was diagnosed w/ alpha1) I dropped down 4 sizes. At that time I had dropped to 150 pounds.

I took a voluntary layoff to get caught up on lawn & garden work. I now know why farmers had so many kids....to keep the lawn & garden looking well cared for!! Also, I took voluntary layoff to get more involved in training for the DD. I need to get more prepared for longer rides. I keep threatening to bike 10 miles to work & 10 miles from work to train & save gas. Don't ya just love them escalating gas prices!!

As for the DD my loosely laid plan is to really give R the first 50 miles while it's cooler and take my good natured time the last almost 15 miles when it is sure to be warmer.

Dairyland Dare

2009-05-23T21:24:00.008-06:00

This will likely be my last year to participate in this trek. The Horribly Hilly Hundreds which is another trek I once contemplated participating in I will likely never participate in either as they have moved away from chip timing. Many of these larger treks want so much for what they offer....it just doesn't seem as worth it to participate. I do still intend to do treks but, more leisurely ones such as the Rotary Pie ride in Janesville, WI or there's another trek up by Arbor Vitae in September that interest me. Wheels In The Woods I think it is. Each of these combined costs will be signicantly less than the other two. In fact, what it will cost me for the Rotary ride & Wheels in the woods will be equal to the DD or the HHH.

I am pretty sure I'm not going to post much as I have become very busy with my farm and readying myself for the farmers market. I have around 3.25 - 3.5 acres of crops. Almost half will be sweet corn. I also am slowly getting mechanical equipment in good working order for the farm, lawns and the cabin. I have 2 mechanical projects completed & have 5 more to go. The plan is to complete 3 more before I need to start attending farmers markets. The remaing 2 will have to wait till fall along with the dismantling my traditional wood barn. I am enjoying the farm more and more....all the time. I am still in awe of what I have! I'm still noticing new things to appreciate about it!

The dominant motivator for working so much ground is to get a little extra set aside so that when my breast reconstruction is completed in December and I'm off work because I'll be on restriction I can breathe easy. Last time I had a lot of trouble with Mayo releasing the proper information the the disability insurance reps. If that turnsout to be smooth sailing...great! Then the other aspect is I am hoping to make a 2 - 3 week visit to my primary health POA in Pensacola,FL. Enjoying a little warmth in December or January wouldn't hurt my feelings either. My neighbors seem to think it wouldn't be an inconvience to them to tend my animals. Plus, being down in Pensacola Karen can have the reassurance that I am not overdoing anything. She has had to protect me from myself before! I asked her the last time I talk with her if she remember that time I tried to go to work with a 102 temp 22 years ago. She said "Oooh, Yes." As in that kind of oh, yes that expresses....and I hope I never have to go through that again! That was TOO scary!!

Ugh! Hopefully Never Again....

2009-05-15T17:33:00.002-06:00

Turned into eight teeth surgically removed. Got given laughing gas before being knocked out by IV meds. I'm talking to the doc one minute and the next minute I hear them telling my driver what I need to do as well as what I can & can't eat. LOL

I have to call Terry....would have more luck getting some of those things through to my brain now!! My original plan was to stop at a local hangout when we got back to the area. He woke me up shortly before we reached it and says "Still wanna stop?" I slowly turned my head left to right and mumbled no.

I have had extractions before but, never used pain killer meds. Eight teeth is a lot though. I'm sad about losing the teeth but, I know it was the right thing to do!!

Our health is priceless.....pride cometh before destruction.

What Kind of Childhood Games Are You Playing?....Pick Up Sticks!!

2009-05-14T21:59:00.002-06:00

That's what Johanna had to ask me on the phone earlier in the week when I answered. SEE she does have a sense of humor!!

I had been cleaning up the sticks in one of my lawn accounts when she called. Not the nicest day in the world. Windy w/ warm humidity. So glad that's done! Received my parts for my Skag from Anderson-Thomas. Now, I'm back in business as far as lawn mowing.

Had my "last supper"- prime rib, baked potato, salad & various other goodies. Going to be a while before I get partial denture plates. First got to get my med bills paid off! Got UofC physicians bill paid off. Now, onto UofC Hospital bill(August pay off) & then onto paying off cancer bill. GREAT news!! Heating fuel prices have dropped by 30% from what I paid last year & I found a more affordable mortgage/car insurance carrier....every bit COUNTS!!

Would post more but, got less than an hour to finish what's left of "last supper" and off to bed.

Swimming With the Sharks...Gonna Make It to High Ground!

2009-05-06T19:24:00.002-06:00

Yesterday we had the shortest meeting scheduled for the conference room in the history of me working there. Rumors ran rampant as they often do in a manufacturing plant. I had often read & heard that some people go into business because they "had no other choice". I had my "head screwed on" that if it was another mandatory layoff.....I was gonna swim with the sharks and make it to high ground. After the meeting it occured to me that's what a person needs to do when they are facing disability or sudden awareness of a disorder or disease. We need to chose to believe we will overcome. That medical break throughs will happen. That we will learn something that gives us an edge!

May Is...

2009-05-02T12:43:00.002-06:00

ALPHA-1 AWARENESS MONTH

Good News & Hardwork!

2009-05-02T12:24:00.003-06:00

When I saw Dr. Hogarth this last Monday my lung function had improved 10% in the last year. He said to keep doing what I was doing. I asked him if I became more diligent with my exercising would that improve anymore. He said maybe but, by exercising I would for sure be able to do more with the lunbg function I have now. Either way that IS good news!!

I do have some female issues so, I need to see an OB/GYN. I had presented the issue to him first because I knew ZZ's are notorious for miscarriages and premature menopause. I wasn't concerned about the former....just the later!! I scare guys up here where I live because I'm educated and know how to do a lot of things most women don't. Just call me the INTIMIDATOR! ROFLOL

He said it likely isn't anything to get scared about. He gave three possible scenarios. The last being the one to be scared about. More than likely I just need to get re-syncronized. I've been under some pressure/stress lately.

Hardwork is coming in the form of training for the DD, market farming & tearing down my barn. Cory looked at it and he said to tear it down and if I still wanted the traditional barn.....Save what I could and rebuild it as I could afford to. Now, I need to look around for a couple good roofing harnesses and possibly scaffolding.

It's Clear As Mud...

2009-04-30T23:22:00.003-06:00

Honestly!

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 is...no matter what....to 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 realize...it 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.

I Feel Criminal...posting this

2009-04-28T21:25:00.002-06:00

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!

2009-04-28T00:58:00.003-06:00

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.

Interview & Americas Grow A Row

2009-04-21T19:07:00.002-06:00

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 inadequate....at 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.

It's Official!

2009-04-15T20:40:00.002-06:00

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.

Keep Your Fingers & Toes Crossed!

2009-04-10T11:50:00.002-06:00

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!

April is....

2009-04-07T20:02:00.001-06:00

ORGAN DONOR MONTH

No Barn Again...

2009-04-07T19:54:00.002-06:00

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.

Trust & Addiction!

2009-04-06T20:17:00.002-06:00

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!!

Closing a Chapter With a Fresh Perspective

2009-04-01T18:43:00.003-06:00

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!

Spring Has Sprung!

2009-03-24T19:45:00.002-06:00

I have been on v. layoff this week. I found a hauler for my Allis-Chalmers C in southern WI. I sent a text msg to Mr. Morgan. He is thrilled Aunt Kate has progressed to the current century! I always used to say that phones were for talking on and computers were for texting on. I meet w/ a lawyer on Friday to determine if a irrevocable trust is the way for me to go. I spoke briefly to Bill today and he dispelled the myth that it was so exorbinant it was beyond my reach. It turnsout it isn't really anymore expensive than to maintain said assets outside a trust.

I'm going to try my best to get into an evening course at UW-EC called Fundamentals of Speech but, have been warned it is hard to do as a special student. Thursday I will participate in a congressional Disaster Response training course in Eau Claire that FEMA and Homeland Security may require in 2010. I also found out my alpha friend Cindy Wilson from Chicago got a single lung tx last fall. She sounds like she is doing GREAT! She also happens to be the alpha support group leader in greater Chicago. A contrator still hasn't been by to fix my stairway because all of them are so busy!

I did find one who will examine my barn to determine whether it can be saved. I've been in several barn lofts and was so taken by the unique rafters in the loft. They appear to be oak to me. I have wanted to save it from the get go but, I'm not convinced it can be salvaged. It's outward appearance has changed quite a bit since last fall. If I am able to restore it I'm not reusing it as a livestock barn but, as a retail facility. I live in what I consider to be a retirement/vacation destination and believe that would be the best reuse for it.

Inspiration Comes In Unexpected Form

2009-03-22T22:10:00.003-06:00

I started going to different churches to get a feel for the spirit of the church to help me in my quest to enable Americas Grow A Row program to flourish here in Rusk county. However, without Colleen Duerr and Rev. Donn Schroeder's wisdom & prayer I don't think it could have gotten to the point it has! I'm discovering it's actually started to motivate me to find a home church.

I rented two movies tonight "The Express" & "Fireproof". I liked the movies and thought about my college days. I remembered how many times people told me something couldn't be done and how I believe they could & did them. It's amazing what one can accomplish when one chooses to believe. I suspect the same holds true not only for me but, for many of you who read my blog. If we will simply give ourselves permission to believe we can it's amazing what we can accomplish. I found the interviews featured on the DVD's most inspiring and reminded how much faith plays a part in every aspect of our life.

What Do You Got Going On...

2009-03-18T19:33:00.004-06:00

I decided to checkout the LBYM board at fool.com today. That was the title of the last post I read....and I thought it was going to be dreary. It turned out she did what my Mother used to tell me..."Count your blessings!".

So what good happened to me today.

-I discovered my new alphanet coordinator is a christian.
-I discovered Joann's friend who died of cancer was her best friend(who was only a few yrs older than her...just like my friend Karen)
-That sometimes we don't realize how much some people value us as a person.
-Although I was swore off participating in any cancer fund raisers...I am indeed not(I was soo
moved by Joann's story of her friend Reggie who lost her battle to cancer)
-I discovered I was going to have at least a 36hr work week because orders are up!
-I may just succomb to text messaging(ROFLOL)
-I enjoyed coming home to another beautiful spring like day

*I didn't experience this today but, Sunday reaffirmed that I moved to a GREAT
NEIGHBORHOOD when I visited w/ Rich & Vi next door*

Just To Let You Know

2009-03-17T19:32:00.002-06:00

I got all setup for an infusion last night and looked at the pocket watch (w/ a minute hand) I use and discovered the battery had died. By the time I got back from Wal-Mart my veins had become weiry. I came straight home tonight and got it started on the first stick! To say the least I was elated !!! I am nearing the end of "Failing Forward" by John Maxwell. I am so glad I bought and continued to read that book. I also skim read the book by Ruth Graham "In Every Pew Sits a Broken Heart". I also have John Maxwell's books "Today Matters" & "The Difference Maker" Don't know when I'll get to them. I expect next trip to J-ville I'll stop at my friend Denny W's(he has an organic farm) to pick up all my market farming books I lent him.

I may be posting infrequently for a while. As soon as I get the minor remodeling work done in the stairway and the house refinanced I will likely get too busy to post frequently. When I bought this farmhouse I questioned the drywall finish job and a couple other things. I kept telling myself "Oh, it's not that big a deal." Well, six months has gone by and as soon as refinanced my poor house is going to get redone a room at a time. Plus, the stairway to the upstairs. It has vertical boxcar siding and half the sinkers aren't counter sunk. The same in the mudroom! I visited with the neighbors Sunday and Rich admitted the previous owner did all the remodeling. I have begun telling people "He should have left it to the professionals & the semi-professionals!"

I also have to begin training for the 2009 DD. I may do the Milwaukee liver walk w/ the Frietag family(They have children w/ alpha1). I also have seeds coming that need to be started. I have grow-a-row, angelflight & next week I am intending to attend disaster response training. I have too much to do but, everybody knows I'm happier that way than too much time on my hands!!

OMG...I've Done It Again!!

2009-03-13T23:41:00.004-06:00

I signed up for the metric century Dairyland Dare 2009! I swear this is the last year!!

I am nervous, scared & excited! I hope I can finsih it this year. What an accomplishment that would be! I'm excited to learn that Len Geiger has several vids on youtube as well(as the result of a link in an alpha-pack newsletter I received). That is so awesome!

Now for that grow-a-row business. Pray for us! It is such a great program especially for those to contribute to that don't have a lot to spare....they can make such a big difference without parting with much cash!! There is an Episcapalian church in our county who sooo needs the assitance. Wouldn't it be wonderful if we could ease some of their burden???

It's Official....I have a cold!

2009-03-03T20:30:00.003-06:00

However, I went 8 months without an upper respiratory infection!! WooHoo!!! Now if only I can stay away from urgent care for 1yr. That was my original goal.

I am almost to chapter 10 in "Failing Forward" By John Maxwell! I almost chose to not finish reading it. I am in the process of helping coordinate a grow-a-row program in my county. There is much excitement over the program. It has been quite educational as well. In addition to that Karen my primary health POA(Power Of Attorney) wants me to go on a Guatemalan mission trip and I guess I'm actually interested. I wasn't at first but, after I read a little bit about it I got more intrigued...who'd a thought. She said I needed to travel and no matter what country I did a mission trip in ...it would be a life changing experience. So, now I begin to save for it.

What A Glorious Day...

2009-02-25T19:42:00.002-06:00

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

2009-02-11T20:23:00.002-06:00

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

2009-02-06T21:47:00.004-06:00

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...

2009-02-05T18:42:00.003-06:00

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!!

2009-01-30T23:51:00.003-06:00

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

2009-01-28T00:33:00.011-06:00

"Our Lives Are Enriched By The Unexpected

People We Meet Along The Way"

Power steering, Water heaters and Enlightenment!

2009-01-27T23:59:00.002-06:00

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

2009-01-22T02:58:00.002-06:00

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!

2009-01-17T23:46:00.003-06:00

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!

2009-01-17T21:08:00.002-06:00

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!

2009-01-15T11:59:00.005-06:00

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

2009-01-11T01:09:00.003-06:00

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...

2009-01-09T21:14:00.012-06:00

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

2009-01-08T10:31:00.007-06:00

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

2009-01-04T23:37:00.004-06:00

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

2009-01-04T00:20:00.000-06:00

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...

2008-12-31T22:00:00.003-06:00

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

2008-12-31T01:59:00.002-06:00

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

2008-12-29T21:22:00.007-06:00

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

2008-12-29T21:13:00.002-06:00

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

2008-12-26T16:39:00.016-06:00

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!

2008-12-25T15:46:00.003-06:00

...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!".