Klondike Monster...

....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???

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

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?

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!!

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...

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!

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...

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

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....

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!!

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!

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...

ALPHA-1 AWARENESS MONTH

Good News & Hardwork!

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...

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

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

Back flips & Cartwheels!

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

Interview & Americas Grow A Row

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

It seems the locals found Americas Grow A Row program too intimidating or felt it was 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!

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!

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....

ORGAN DONOR MONTH

No Barn Again...

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

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

Trust & Addiction!

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

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

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

Closing a Chapter With a Fresh Perspective

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

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

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

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

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

Spring Has Sprung!

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

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...

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

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!!

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!

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...

It was 36 degrees out and just beautiful out!!

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

Living Well While Living With Uncertainty

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

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

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

Furnace Filters

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

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

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

Old McDonald Had a Farm...

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

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

What An AMAZING Day!!

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

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

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

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

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

"Our Lives Are Enriched By The Unexpected

People We Meet Along The Way"

Power steering, Water heaters and Enlightenment!

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

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

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

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

5 in 1

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

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

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

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

Enjoy!

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

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

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

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

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

My-T-Cold!

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

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

AngelFlightCentral

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

Your an Anomaly...

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

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

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


There is an organization out there called:



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

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

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



Their services are free!

FYI: Symtomatic vs. A Symtomatic & Flutter Valves

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

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

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

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

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

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

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

Exercise, Marley & Me and Restlessness

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

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

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

I Do Not Choose To Be The Common Man

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

With God's help, this I have done.

The Road Not Taken...

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

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

It says it all.

Four Wheel Drive Trucks Rock....Firing Somebody

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

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

FYI: Teeth & PSA's

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

PSA = public service announcments

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

Shot In The Dark Method

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

For Those Looking From The Outside In

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


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


1 - for better health


2 - to create awareness


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

form...not my worries or fears)



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

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

I've Got Plans!

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

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

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

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

The Best Laid Plans Of Mice and Men...

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

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

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

Have a Great Week!

Give It Away...Pay It Forward

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

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

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

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

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


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

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

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

Tomorrow's Election Day...

Please, get out and vote!! I believe if you don't vote you have no right to gripe.

Where have you been???How are you doing?

I still in the midst of that dreaded moving. I told someone the other day....I hated moving even way back in college but, this is worse! By 40 you have acquired way more stuff than you had at 20. Can hardly wait for it to be over. I likely won't post for quite a while again. Got some new windows for the cabin & the house ordered and got to get some other stuff done b4 the snow flies and frost sets in. I hope to make an info post about PSA's & the subject of teeth which can affect an alphas health. Hopefully I will come back to reread this post and remember to make the info post(I do forget things on occasion)!!

Gosh, What Have I Done!

Nah, not really. Everytime I come to my new farm I notice something different. I'm a little behind schedule as far as moving. I walked in the vacant house the day I closed and had difficulty breathing. I left a message for my original nurse to return my call. I really trust Sue. Not all alphas should expect to have a relationship with the nurse that teaches them how to self-infuse. I'm just VERY LUCKY!

She called back an hour or so later. She told me to have my ducts cleaned. Make sure they use brushes & back blow it. If I decide to keep the carpet there is such a process as chemical free steam cleaning which Advanced Restoration does. She also encouraged me to contact the many people I know in the alpha1 community about what household chemicals are best to use. The American Lung Association is another good source!! Today they are coming to clean the ducts. After, the house is thourghly cleaned(walls, too) they will come with the steam cleaner and clean the carpet.

I also had the fuel pump go out on my truck so it was in sick bay for a few days. I may or may not post for a while but, eventually I will since I just got DSL. Man...is it evr quick!!

It's OFFICIAL!!!

I close on the farm September 29th and start moving in that day. I never realized how purchasing your own home could feel so empowering. I can hardly wait!

I've read "Sailing Grace". I'm in the middle of one of three John Maxwell books I've purchased over the the last month. My sister recommended to me (when I was in Chicago at the Borders down by Water tower place) Dare to Dream, I also picked up Failing Forward at the same time. I'm half done w/ Success 101. I am also looking forward to reading the rest of Kevin Lemans birth order book that I picked up at the grocery store. I intended to get packing boxes from(which I got none that day) and walked out w/ Kevin Lemans book. LOL

I also have an Ann Coulter book I picked up while in Chicago. Ah, well. I have all winter to catch up on my reading. Working 45 hr work weeks, not working out but, trying to stay caught up on sleep & having so-so successful infusions(4 stick days).

Hopes, Dreams, Miracles & the Dairyland Dare

All happen everyday (well maybe not the DD)...and as we get older we sometimes forget this! Somewhere around the age of 7 - 9 years old I' d dreamed of owning & living on a farm. By my early 30's it came to seem like such an impossible dream. About a month ago it seemed like my co-worker was assisting me in doing my job(granted he wasn't complaining...but, it sure didn't feel good ). I felt really helpless(I believe one of the rottenest feelings I have ever felt). I made an appointment w/ a new pulmonologist signed up for the DD, submitting an article(which I questioned whether I should submit) and hoped I hadn't wasted anybodies time including my own.

Last Saturday I attempted the DD and made it almost 40 miles(of approximately 65 miles) I averaged about 7mph by the end. Although, I didn't finish , I was satisfied w/ the results. Although, I may not set the world on fire....I set my soul on fire. At the 10 mile marker I was ready to throw in the towel! Fortunately the guys working the water stop booth at the 1o mile marker didn't have a clue about the course....so, I continued on. I was a beuatiful, demanding but, satisfying course. I averaged 7mph(w/ a top speed of 39.6mph inadvertantly).

I went down to Janesville, WI (where I grew up) and took the chance that RAC was open & the TANITA scale was setup. I got on and experienced the joy I had been hoping for thanks to Dr. Hogarth at UofC(University of Chicago). I had finally lost fat weight[23.8 lbs] and gained muscle weight[???]. On top of that I was in range hydration wise!! Although, I may not be seeing it on the scale I am seeing it around my waist!!!

Today, I met w/ a new loan officer for a 20 acre home w/ a shed, greenhouse, barn & garage on 20 acres. She told me my house pymt would be $12 less than the previous loan officer. I grew up with a fantasy of having a woodworking shop that would rival my fathers...I think it's on the horizon!

Inspite of everything.....what a beautiful life I have attained!!!

Nervous As A Cat On A Hot Tin Roof!!

Yup, that would be me!! I just accepted a counter offer on a 20 acre farm and we are worried the septic tank doesn't exist or will not pass for a conventional septic tank. In most cases it would be negotiable however there are to be 3 more showings of said property and any secondary offers could eliminated the current owners need to negotiate or repair the septic.

It is less than 3 days b-4 the Dairyland Dare. I am not so sure I injured my back at work buy, glad it feels like it healed. I backed off on working out until a few days ago. I feel the best I have felt physically in a year. We are working 9hr days and I still feel really good except for an insatiable appetite!! I am hoping I can use my frustration/anxiety to keep me going when those hills get steep theis Saturday doing the Dare.

Either way I must say this....It is SOOO hard for me to comprehend 2 months ago I thought I would be forced into disability and now I feel like I could go 5 more years without supplemental oxygen and continue to work my physically demanding job on the floor. It is such an AWESOME feeling!!!!!

I Will Be There!

I feel very under prepared but, not because of my alpha1....because I have never done the trek. The Dairyland Dare is one of the most difficult bike treks in Wisconsin. Long work hours a couple weeks did curtail working out though in favor of rest.

I am a newbie as a bike trekker in my minds eye. I wonder mostly will I pace and fuel myself right. Every newbie has those concerns. Due to the humidity I have been cross training at OST. I've been averaging 1.5 hour long workouts. Last night I increased all the weights I lift by 10lbs as well as increase the height of the ab crunch board by one notch. I skipped tonight because I strained my back at work tonight and felt it was in my best interest to give it a rest.

I am gaining weight but, I feel muscles tightening up and my shape changing. I constantly have to remind myself that muscle weighs more than fat and eventually the scales will begin to tilt the other way. Even if I am unable to complete the 66 DD I still feel I'm getting in better shape. I was able to get my stick last week the first time w/ no vein collapse. So like Dr Kyle said lifting weights strengthens veins. Last week was the first time in months I didn't have a vein collapse after I got the safety intima(some know these as angio sets) in the vein. That was GREAT!!!

I So Live In Mayberry!

I stopped by OST to renew my fitness membership. In the past the daytime workers never seemed to have a clue what was going on so, I asked when Brenda would be in. By first break I find a voicemail from Brenda saying "Hi Katie! I figured when she told me the person who came in said she got a break in price because of some special medical condition...It must be you." She left her OST's number and her home phone number. My key card was reactivated before they even received payment. I biked 16.8 miles today. It was really weird...on some hills I could keep a staedy 20mph yet on others I was doing well to do 6.5mph. The only thing I could figureout was maybe one was more shaded, had less breeze or was more humid. I worked out at OST for about and hour stretching & lifting weights.

It's Official!!

I have changed to a younger pulmonology doctor @ UofC. My previous pulmonologist at Mayo. Thought that complaints of excessive tiredness & phone calls in regard to whether or not she should be put on Predinsone should be ignored. On top of that the last time I went to Mayo. They didn't put a pulse/oxy on me, check my weight or listen to my lungs before they switched one of my inhaler meds...sealed the deal. They got fired!!

This recent vist w/ a pulmonologist was the first time over the years I actually wished I'd had someone in the room w/ me! I likely remember everything but, wish I had the insurance policy that insured I DID!! I have a ENT appointment, eventually a sleep study, a VO2Max, a arterial blood gas test(complete with wrist being numbed up[followed by needle stick and catheter insertion]), three blood draws and a sleep study(me might need one of those machines that helps a person have a great night sleep...I think they are called a c-ap[ I think that's short for sleep apnea]?).

To some of you this might sound terrible but, to me it's one of the sweetest sounds I have ever heard! Three weeks ago my job appeared on the jobs for bid board. I thought buying a house was a wasted pursuit. And just what was I supposed to do with the rest of my life after being an active person my whole life( or in my Mom's words: "You were hyper but, not the kind of kid a parent worried about.") ??? I have actively been looking for a house but, it seems to always be the basement that rules a house out. Having a house basement recertified I learned today doesn't really completely eliminate the mold mildew issue...it only covers it up( they come in spray the walls of a basement with a bleach/water mix, let it dry, then paint over it. That doesn't rule out mold and mildew in the timber.)

The Good News is Everybody Does It...

The bad news is it will take you a few times before it becomes second nature to you. That's what Denny W. told me last week when I called to findout what I was doing wrong trying to remove my cleated bike shoe from the pedal.

I had an America's Funniest Video moment for which I am grateful no one had a video of. I pedalled up to my driveway. Came to a complete stop thinking how hard can this be to get my shoe released from my egg beater pedals. Tried once, tried a second time and simultaneously fell over sideways. Later in the week when I got home from work I slipped on my bike shoes, got on my bike and leaned against the back of my truck practicing removing my cleats from the pedals. I also discovered my floating cleat is on "my" right foot instead of my left foot so it is kinda awkward but, I do have the hang of it now.

I went down to Spring Street Sports in Chippewa Falls to buy a different saddle. According to one of the techs the Damselfly is too narrow. The shop owner said to hang onto the receipt and in a week if the seat didn't fit right bring it back and try another one. I needed a 155. I bought a Specialized saddle..... since according to Terry bike company sales lady they were none available in different sizes other than length and width at the back which were in inches. I'm loving the new 27 speed set up that Anybody's Bike Shop in Eau Claire put on. I no longer have problems with the chain dropping off the front chain ring(I'd taken the bike setup with the 24 speed in to be readjusted several times but, within 10miles of pedalling it would go back to dropping the chain).

I have to say the Spiriva is working well. I also think the Cefprozil the Urgent care dr put me on Friday is helping but, it's going to be a slow recovery from this Upper Respiratory infection.

I saw Silent Sports July issue is out. On the front cover the caption reads something like "Dairyland Dare a draw for on gutsy woman". That lady would be me. The article appears on page 19 & 20. I passed on the baseball game today in an attempt to get rested up and lick this UR infection.

I went in Noreens chatroom last night & discovered that next years Alpha1 National Convention is tentatively plan for San Francisco. It would be nice to be sponsored to attend. On the other hand I might just have to save up my schillings to attend. San Francisco is sorta near Monterey, Santa Cruz & Carmel.

Someone Let My Evil Twin Loose In The Bike Shop,,,

...at least that's what I'm trying to convince everybody. I went in to get my 24 speed upgraded to a 27 speed. I saw these bike shorts, then I asked about Cat eyes and water bottle holders. This was followed by a discussion about bike seats, pedals and bike shoes(so much for foulies). I set aside a pair of mountain bike bicycle shoes(as they were more comfy and stable than racing bicycle shoes). Well, of course you can't have shoes w/o cleats and pedals, Right??? So, now I have added cleats, shoes and pedals to my things needed. Not to mention 2 more pair of bike shorts. That is followed by an additional water bottle holder. I deplore my new cat eye so that is replaced by the new Cannondale computer w/ easy to use buttons on it(but, we didn't go all out and spend another $20 for a wireless unit). Seeing as I will be participating in a longer more grueling trek this summer I need a helmet that is lighter and has more vents, too!

Oh, yeah! I almost forgot....the verdict is still out on the Spiriva. Other than it's real easy to use. I am on my last see food diet day. Tomorrow is the beginning of the new whole foods diet. Needless to say I splurged and bought Ruffles potato chips to go w/ my sour cream & french onion soup mix dip.

I bought bread w/ flax seed, Asparagus, apples, pears, cauliflower, rutabaga, baby red potatoes, lettuce salad mix, Alaskan salmon and whole milk to go with my Kasha Cinnamon harvest cereal. Tomorrow Crystal light is banned from my diet. Just straight water. I figured being off this week it would help me stay committed to my new eating regimin.

What do I hope achieve by this change??? I hope to better fuel my body 24/7 so I no longer burn muscle mass when I want to burn fat. Also, to help myself not "bonk" during a trek.

All n' all I guess I got off cheaper than if it had been a Harley!!

Long time no talk...Lots to tell!

Hi folks!

I have been very tired lately. To the point I was falling asleep at the wheel going to work. I told my Pulmonologist at Mayo about that as well as the fact my rib cage is expanding I guess because of bulla in the bottom of one of my lungs. My pulmonologist has switched me from Combivent to Spireva(sp?). Finally turned in the scrip @ the local Wal-Mart but, they couldn't get it filled & processed before I went to work today. Told the Pharmacist I would have to pick it up tomorrow as I had to get to work. He paused as he was walking behind the counter w/ a deer in the headlights look(which if you know him means he feels really bad they weren't able to get my script filled before I left).

I am feeling more rested. I am still cancer free as of Wednesday. I had to laugh though....when I was called in for the mammogram they asked who I was and assigned me changing room # 7. I'm sure there are ladies out there very afraid of a quick comeback of the Big C but, not me!!

I got a week of voluntary layoff next week. I am supposed to have a two part article that is to appear in Silent Sports magazine over the next 2 or 3 months. Burdy gave me grief uptown tonight for not seeing me training like he saw me last year. I also decided to let that piece of land go because the person who had it for sale wanted too much for it. I decided to make an offer on(I cringe as I say this) a double wide on a basement with 11 acres. It is in a township that the roads are better cared for during the winter and during the summer gets far more traffic. I reasoned that I could sell pick your own fruit and be very sick or rent out recreational equipment and be very sick. I then could save up money to buy a far superior piece of land at a later date to build a dream home on. Nobody started at the top of the heap and in the event my lungs deteoriated much faster than expected I would not have as large a debt load.

I am still mowing lawns but, picked up my commercial mower from my girlfriend in Janesville. I now wear a 2 strap disposable respirator mask when I am mowing lawns as well as when I'm raking. I am looking forward to my garden I was unable to have last year. I feel bad for the GM workers in Janesville that will soon be w/o a job(I grew up in J-ville and I still have friends who work at "the plant").

Tommorow I go take my bike up to a bike shop in Eau Claire to see about getting it changed over from a 24 speed to a 27 speed. In addition to that I get to see how many water bottle holders I can install on my bike. This morning I am hoping to figureout how to load songs on my Ilo I bought a month ago. Burdy's BIL("bad Brad") is going to loan me his CD collection . I am hoping loading 160 songs on it will be enough to get me through the Dairyland Dare 100k. Also, I did attend the on the water seminar at Wayzata Yacht club. I got persuaded to attend a baseball game in the Twin Cities(Minneapolis/St. Paul). It is the Twins vs. Brewers game June 29th and it will be the first baseball game I have attended since I was 11 or 12 w/ my church youth group(my Father wasn't fond of sports as a rule).

Double Dog Daring

I decided if it's not too late to register for it(and I can either register in a non traditional way since I no longer have home internet)...I am going to attempt the 100k Dairyland Dare. I really need to nip my self doubt in the bud and challenge myself. I have been filling myself self with too much I shouldn't I couldn't.

Wish me luck!! At the very least the training will help my body become better conditioned.

Katie Has a Meltdown,Chicago & Ed day

I've been struggling with respiratory issues for a month or two. Each spring it seems to get a little worse. I wound up using a new prescription for predinisone and a new antibiotic named doxicyline hyclate. I had some great physical highs while in Chicago.

-I ran 30 ft to my car in big bad airred Chicago Friday and my lungs didn't tighten up when I
stopped

-I woke up Sunday morning feeling like a million bucks!!

- I got up Sunday morning and my peakflows increased 200%

- I walked like a son of a gun and I talked like a son of a gun during the Stepping Up To Wellness walk...I was on cloud 9...I felt normal and was sure if I had completed the 5k I would have made some serious time

The Meltdown:

The next day my peak flows had dropped 33% of what they were the day before, I felt crummy, I developed a fever and began urinating a lot and every irrational fear kicked in!

Was I going to be on oxygen in 6 months or less? Was my liver giving out? Maybe I'm never going to feel better.

Yesterday I felt good overall again!

I met Dr. Hogarth who as I've said before I want to have as my new pulmonologist. It was either Dr. Hogarth or Dr. Love who said during their speaking segment that Alpha1 was more common than Cystic fybrosis and hodgkins. That's really sad. We all need to do our part to help raise awareness about alpha1. I also asked Marlene Irwin about putting together an audio PSA for us alphas to submit to our local radio stations. She said she would see what she could do! The Alpha1 Association is continually trying to help make our lives better.

I always try to see and try something different when I'm in Chicago. To my sisters Jane, Mary & Johanna....you'll be so pleased with me. I tried mussels for the first time and like them! I also stopped by a Rockler store in Schaumberg. That was fun, too!

Nobody clobbered me on the freeway!

Finding the cancer wellness center was a peice of cake once I had a good chicago & vicinity map! Finding the Hilton in Oakbrook was challenging. I called my friend Rich to help and he talked about nobody would be letting me in during rush hour but, I never had a problem.

I ate very well tonight. I sat at a table w/ Darrel Nall. I told him I needed to get my Prednizone(sp?) prescription filled and Darrel Nall said he'd make sure I was able to get what I needed. He's very good at making sure alphas have what they need at ed days and the National alpha1 convention as far as medical needs are concerned....at least from my observations.

I had been getting burned out on fundraising but, a visit w/ Wally Checkalski last night reminded me why I had wanted to in the first place. I made a last minute pledge drive effort and stopped to visit him as his wife died of ovarian cancer a little over a year ago. He talked about Hope House in Marshfield, about how much he pays attention to whats going on in cancer research and the fact he and Anne were about 8 months shy of their 60th wedding aniversary when she passed. It was very humbling to listen to him. I found myself getting kinda emotional. It was almost as if I was right back in July of 2007.

Sometimes One Has To Make Compromises

If I want to race sailboats at Wayzata the summer I need to attend their 3 on the water seminars in May. I felt that due to the fact that my alpha1 is still advancing instead of stabilizing I better scrap the Rock 50/50. I can always bike w/ oxygen but, I doubt if I can race a sailboat with oxygen. I just don't know how much non-oxygen time I have left so I am committed to making the best use of it I can!!

I bought a new to me car which I hadn't planned on buying till after I built my healthy home but, when the mechanic says you would need to throw $3000 at a van that gets 26mpg max with 180,000 on it.....it became a no brainer. When I first got my car I had to laugh!! I distinctly remember telling my Dad almost 20yrs ago when I was in college "I'd rather walk than drive a car!". I'm certain if he were alive today he would never let me live it down. That 2003 Bonneville certainly is growing on me!! She gets 5.5mpg more than the van just commuting. I can't wait to see what kind of fuel economy she gets when we go to Chicago.

Just an update

I made the appointment with the architect. It is so hard for me to fathom sometimes why some of us in the building industry are staying busy such as the architect and the company I work yet others like my former employer are forced to shut their doors. I am heartened to see many ads for employees wanted offering good benefits pkgs in this last Fridays papers. My former co-workers were told to start looking for a new job last Thursday Morning. Most of them have never worked anywhere else and have been there 25 yrs or better.

My vehicles have issues so I haven't been stopping before or after work to workout for fear they wouldn't start. The soonest I can get either one into a reputable mechanic is this Thursday.

I decided to go with a Rustic Pine wide plank toungue & groove flooring. I am having difficulty finding it locally but, have not gotten done contacting all the people I know that might know of somewhere under the radar that I could buy it. I just can't believe I can't get it locally. I did find it for $3.45 ft out of Maine. Hopefully in another month I can get that parcel of land I am interested in soil tested and see if it tests out for a holding tank. If it tests out for a mound system I'm running away as fast as I can!!

Last but, not least I probably won't be buying a J24 this year. If finances & time permit though....I will likely be racing at Wayzata Yacht Club w/ the Minnesota Womens Sailing Organization or the WYC(www.wyc.org) sunday races. A crew membership is much cheaper than slip rent(and here I thought Green Bay slip rent was outrageous!!). If you go to WYC website take the time to watch the first You Tube clip and then watch the clip titled "This Is Yacht Racing". That's what makes us crazy fools do it!

Where Have You Been???

I have been tired and grumpy. I just can't see a grouch being particularly inspirational! I can't seem to shake the tiredness but, maybe it is because of the house I live in. Limited insulation and a number of other offenders to my lungs. My computer has become incredibly slow. I need to surrender it to a guy at work to wipe the hard drive and reinstall everything. They tell me data miners have become very detrimental to the speed of computers in the last 2 years.

I am also trying to get everything in order so I can build a house this year. It's truly amazing how much an individual agonizes over what building materials they will use. Not to mention the layout!I need the blueprint so I can get bids and I need the bids to file for a construction loan and I want to do that before loan interest rates go any higher!

I am signed up for the www.cancerwellness.org Stepping Up To Wellness walk. My team name is: Affirmation Allies. If you would like to donate we will all appreciate it. I have 6 others commited to do the walk w/ me. I also expect to attend the Alpha1 Education day being held the day before in Oakbrook,IL. I'm very much looking froward to both!!

In the not too distant future I intend to add some links on the right side bar of this blog of foundations that provide financial assitance to those with medical bills for cancer, alpha1 and several other diseases as well. I also expect to put a new itinerary up for me this year...it will be somewhat limited due to anticipation of working as the general contractor of the building of my future home.

Apologies,Apologies....& I Made It To 42!!

Many apologies for not posting more frequently!! Although, I am back on 40 hr work weeks(till nextweek...45) I have continued to be very tired. I've been sleeping 8 -10hrs every night when I get home from work. I haven't worked out at all since around the first week of the year. I was put on Levaquin a while back but, no one saw the need for me to be placed on Prednisone at the same time. My lungs still aren't quite right. I get feelings of lightheadedness and for a while was having awful head rushes...I had attributed it to the Levaquin and then to the guifenesen(I took this in hopes it would help clear my lungs). As a result of this I chose to not attend Strictly Sail. I'm a little bummed but, it's probably just as well. I think if I attended I might come home the owner of a new to me sailboat which can wait till I've seen Dr. Hogarth in March. I really need to see exactly what if anything I can do for my lungs.

I guess I could say "poor poor me" except I stopped at Burdy's after work and was struck by the fact I made it to 42 and have been cancer free for over 6 months now. Linda(Mrs. Burdy) was there tonight. Right after I returned to Wisconsin folowing my cancer surgery I wasn't able to drive and walked to town due to boredom(plus I am pretty social). Due to heat, meds, soreness or all of them together I was having a time making it home(walking and getting sick to my stomach). Linda stopped and said "You mean you STILL haven't made it home yet?!! GET IN!! I'll give you a ride. I TOLD YOU to call if you needed a ride!"

I turned 42 today. I know of at least 5 classmates whom I graduated high school with whom have passed away. I know of at least 2 people I attended Eastern Oklahoma State with whom have passed. My life may not be as long as I or anyone else thinks it should be.....but, I work at making it a rich and full life instead! Tomorrow I pickup my Saris T-Rax Pro 700 series bike rack. Monday I sign an agreement to begin the process of bidding on a piece of land. In 30 days I'll know whether I get it.

I'm waiting on a couple woodworking books. "The Cabinetmaker's Notebook" and another by Udo Schmidt. I already got the one book by Tage Frid. I'm thinking of ordering the book "The Diving Bell and The Butterfly". I don't think I could ever watch the movie. It's about "locked in syndrome". It is the memoir of a man who was editor of Elle magazine who suffered a stroke at 43 yrs old. When he recovered conciuosness he was only able to comunicate by blinking one eye lid.

I took care of my Dad when he died of brain cancer and it still bothers me to this day when I think fo how quickly his quality of life changed. What most people don't know is... He went from being able to run every tool known to man(or at least pretty close) to not even being able to dress himself within 2 weeks time. We didn't learn till he was hospitalized 10 days before he died...that the tumor was placing pressure on his optical nerve so that he could not read, see a movie or tell what time it was. He essentially was locked in his body. My father was a very gifted man. He wasn't just a high school industrial arts teacher/dept head(tech ed). Until 1975 he was a licensed plumber. He would master one thing and then proceed to the next thing. He taught me how to roof, drywall, frame up a building, lay bricks and many other things. He made furniture(& looms) and he taught my brother how to be a machinist. In retirement he took up lapidary & billiards and looked forward to returning to Wisconsin in spring to all his tools & equipment.

I asked my Mom after Father had passed away how he knew how to build the cabin...I mean I knew how he could understand how to build a house but, a cabin is unique. Mom held her hands at least twelve inches apart and said "He went down to the library and got a stack of books this high and 2 months later he built it!" That just made me think WOW!!

I Want A Scooter!!

Kathy in SDL where I have been working lately had been complaining that she had to go to the computer in another part of the plant got a Mongoose scooter today. The night shift manager and the lead man from SDL came and presented it to her. What makes it especially funny is she is in her mid - late 50's. We all just laughed hysterically over this. I don't think she ever attempted to ride it but, threatened to in front of the department supervisor!

WE ARE ON 40 HRS NEXT WEEK!!!!!!!!!!!! HOORAY!! 8HR WORK DAYS!!!

I have visions of working days dancing through my head!!! A position on days has come up for bid. It is the same job I do nights so, everybody keep their fingers crossed cause I bid on it. As Johanna said "You need it for you health and sanity!" . I don't sleep well during the day and I could be more involved in my local community. I plan to take a SCORE class this next Saturday. I am confident it will be helpful!

I'll Take A Cup Of Sleep With That!

I have worked out sporadically but, am very glad for the first one as it helped my lungs pop. My lungs had been tight and sometimes when I do cardio/ ab wieght training it seems to help my lungs pop afterwords when I get home and lay down. Simply said...trapped air in my lungs escapes and I seem to have an easier time breathing. My supervisor in a meeting w/ us today said "Orders have dropped off so we should be back to normal hours pretty soon. I DIDN'T say any voluntary layoff!!" The 8hr work days can't come soon enough!!! I doubt they(10hr week days and 5hr Saturdays) have helped my lungs function well. I rarely get more than 4 - 5 hrs sleep a night as I have never been able to sleep much during the day. I'm gonna get my van fixed. These gas prices have made it to where it will be cheaper to fix it than drive my truck. Although, the last month or so I probably would have drove the truck with the ice & snow we had over the last month.

Greetings from Snowy Northern Wisconsin!

I was trying to remember when it hadn't snowed when I was driving home from work. Our snowmobile trails were opened by December 15th for the first time in 8 or 10 years! WOW!!

I've been sick. First with lung infection. Followed the next week with 3 day stomach flu. YUK!! I am still working the long hours. I turned my laptop into a shop to be worked on. I miss it but, I'm probably getting more sleep because it's not there for me to get on when I get home.

I am having hit and miss luck with my infusions. I just renewed my fitness membership for 4 months. I hope I can squeeze in 1/2 hr workout a day and that it will improve my lung function. When I went out to my truck last night I had to stop every so often to regain some air but, it was only 11 above.

Have a Safe and Rewarding New Year!!!!

Chicago became....returning to dodge

My plan this last weekend was to attend the Alphapack Christmas party and continue onward to Chicago. Between sick friends and bad weather it was deep sixed! The fact that the Alphapack Christmas party was cancelled due to the threat of 9" of snow(to the best of my knowledge never came to pass) was a HUGE disappointment!!!

In previous interviews I had said "You have to own the disease...You CAN'T let Alpha1 own you." which I truely believe. As long as one remains inactive and silent.....the quicker you're going to die and the slower a cure will be found!....EQUALS letting Alpha1(A1At) win.

I had hope to meet new alphas and help them see that it's so much more advantageous to them to be active and promote awareness than remain quiet. As long as one stays quiet fewer new people are accurately diagnosed, less new people participate in research, less progress is made and the further we remain away from a cure.

Aside from my grumble I guess it turned out for the best all n' all. I had been under the weather and called to make an appointment w/ Urgent care and for some reason wound up going to the family practice doctor who diagnosed me back in 2003 for alpha1(at my request I was tested for alpha1). He knows nothing about alpha1. He asked the nurse outside the door "WHAT'S augmentation therapy?!" He came in and couldn't accept I was only blowing a peak flow of 200 when I have come to U.C. before blowing as little as 125 on a peak flow meter. He also suggested 3 times I be tested for allergies. My visit was more premature than usual since I opted to actually use my 2 remaining vacation days as actual vacation days(where I work there isn't sick leave offered). I thought he was putting me on z-pac and 15 day course(that's what he said) of prednisone. He put me on 5 day 500mg Azithromycin and 12 day course of prenisone. He never asked if I had any severe reaction to 500mg azithromycin. End result: too many hours so I suffered through it. Glad it's over!! Came back early and slept 8hrs last night and hope to sleep another 8 -10hrs tonight as the sleep had a marked difference on my peak flows. My best peak flow yesterday was 175. Today it was 250. Although I would have liked to have taken the cancer wellness center tour, visit the Art Institute and Shedd's Aquarium.....Chicago isn't going anywhere. I can visit another time. It was really nice to only work a 50hr work week for a change!!!!

I Realized I Forgot To Mention Some Things......

Firstly, I got my flu shot on November 1, 2007.

Some of those medical bills I received I was told to ignore and that someone would soon be calling me to apoligize for the mistake...which that individual did.

I also thought I had stated back when I was going through cancer surgery and recovery when I became cancer free I intended to do an affirmation walk every year. That it would be a different organization every year to keep it interesting for me(and spread the money around).

I couldn't find anything in my posts back in July or August. I am considering doing the Stepping Up To Wellness walk for the Cancer Wellness Center of Northbrook, Illinois. I will make up my mind after I have hopefully taken a tour of the facility December 17, 2007. I'm sure some might be wondering why....here are some of the reasons:

I have friends that live within 10 miles of it.

I think there maybe people I graduated high school with or attended college w/ that live in the vicinity.

I like what I see they offer to people fighting cancer, cancer survivors and to caregivers of those dealing with cancer.

Nuff' Said!

Thinking Outside The Box!!!

That's RIGHT! That's what I did Thursday. I psyched myself out!!

I got one Saf-T-Intima out of the box and reached for a second one. I then looked at the second one and told myself outloud "You don't need that second one because....You ARE going to get it on the FIRST STICK!!" I then proceeded to return the second needle set back into the box it came out of. Secondly, I told myself that if I didn't get this right Accredo was going to get those nurses from homecare to start coming back in! Talk about instilling the fear of God in myself! It worked like a charm. My hands didn't shake, I didn't blow a vein, I didn't have a vein collapse and I got it first stick. Let's keep this routine going! It certainly helps my confidense a little. The folks at Accredo would not do that though....They were as disappointed as I was with the Homecare standards. Besides that Leann from Accredo sez' the boss says "She knows her stuff!" According to Leann coming from the boss "That's high praise!"

I wanted to comment about the homecare nursing team. It really isn't the nurses fault. They did care but, ultimately the leader of the team set the tone....not to mention the rules the nurses have to live by. The nurse that leads the Accredo nurses has great leadership ability and it shines through in the job that the nurses that go around giving people infusions and teaching people like me how to self-infuse.

I did absolutely nothing constructive today unless you call going to Wal-Mart and Bookworld in Rice Lake today. The Wal-Mart in Rice Lake has a bigger selection of things and sometimes better prices than the one in Ladysmith. Since I was in Rice Lake I decided to stop at the bookstore to see if any new sailing magazines came in. YES, I was rewarded with Cruising World & Sail magazine. Now off to read some KJV bible.

Why Don't You Just Get A Port???

Why don't I just get a port? Actually, in the beginning that's what I wanted to do because I was chicken about sticking myself. I asked my pulmonologist about it. He said "I am not in favor of it due to the fact they are prone to staph infections." My reaction was.....Say no more! When can I start learning how to self -infuse direct into my veins? My father had an older sister who he loved dearly that died of as a result of a staph infection.

The reality is that whether or not you have a port to stick a needle in or stick the needle into vein you're still going to have to stick yourself or someone else will have to....there is no escaping it.