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.

I Wanna Be Victorious Every Week!

Coach Barnabo in high school coined the phrase "Ya Gotta Wanna!" Well, I got plenty of wanna but, I seem to have had a failed self-infusion. First I blew the vein then the second time the vein collapsed. I spoke to the head nurse at Accreddo today and she said I wasn't drinking enough fluids if my veins were collapsing. GRRR!!! I drink between 60 and 80 oz of water a day.

I was victorious in another way though. I did get my last disability claim to go through finally. So, I should see a check reasonably soon. I am already thinking about my affirmation walk for 2008. It's a toss up between two. It depends who I can get to do it with me. Two events in question are both team events. One is in Southern Wisconsin...the other is in Northern Illinois. It was interesting to go read my post on here from June, July & August. It's incredible to read how hightened my emotions were and my reaction to everything.

It looks like I'm going to Strictly Sail in Chicago after all. Woo Hoo!! Hopefully between now and then I will have acquired a nice thick long wool coat down there. I did see some last year at the mall in Janesville but, they didn't seem that thick. I' ve always wanted one. As Tony likes to always tell me "It's Chicago! We'll find it!!"

I'm Thankful For!

When I lived in Claremore, Oklahoma I became friends w/ the Widneys and at thanksgiving they would go around the room and everybody had to say something they were thankful for that year( and when it came to the children...that could be quite comical). So, since I have the day off I thought I would post a list of what I was thankful for.

1) My first nurse Sue who made the intimidating transition to self - infusing smooth
and near painless!

2) For my breast cancer being detected early helping me to avoid radiation (which would
have sped up my lung function deteriation)

3) That my nephew Morgan returned from his tour of duty in Iraq SAFE & SOUND!!!!

4) For my augmentation therapy being approved by my health insurance provider( I was so,
scared I would have to pay for it w/ money earmarked for a healthy home
[http://www.healthhouse.org])

5) Believe it or not the astronomical OT I've been receiving lately that is helping me pay
medical bills that keep popping up from this last summer

6) For out of this world friends, family & neighbors!!!

7) For being able to attend the alpha1 retreat this last spring and the national alpha1 convention
where I learned a lot more about alpha1 and care/prevention of deteriation of my lungs

8) For still being able to bicycle or walk w/o supplemental oxygen

I can go on but, I need to get some shut-eye. I've had no upper respiratory infection since shortly after the Hike For Healthy Lungs....with adequate rest I have high hopes of keeping it that way!!

Happy Thanksgiving!

Books, Brakes(breaks) & ATTmosphere

What a combo, huh! Well, everybody knows Katie LOVES books(Thank You Mrs. Deeg whereever you are...last I knew was Chattanooga,TN). Mrs Deeg turned the hatred for reading Mrs. Frieberg created inside out! She turned me onto "The Boxcar Children" and I went from a 5th grade reading level to a 12 grade reading level in a little over 3 years. I also gained a beyond 12 grade comprehension level! I bought the book Too Big To be Small But, Too Small To Be Big and the Bible(KJV).

When I was in college I made a commitment to read 3 pages a day(well sort of...it all averaged out)...one day I think I only managed 1/4 or 1/2 a page...a lot of begots(sp?). It was actually really interesting. There are a lot of great stories(parables) in the bible. My favorite is King Soloman's Wise Ruling(I Kings Ch 3 vs. 16 - 28). Back then I found Genesis & Psalms quite boring. I guess I've become more tolerant w/ age as I don't find them so irritating! I am happy if I read 1 page of the bible a night right now!! I don't read as fast as I used to. Plus, I'm extremely tired. I don't turn down OT or much voluntary OT.

Breaks(brakes)...what's that about? I was told doing rotor brakes was much easier than drum brakes...NOT!! I wound up calling a farmer friend of mine over to help when I attempted them. We proceeded to break the corners of the star bit off and ruin a 3/8 socket rachet. After getting only 3 - 4 bolts loose he concluded I would be better off putting it back together and letting an automechanic work on them...I agreed. However, I was thankful as I suddenly have the opportunity to work all kinds of OT!! I now have paid 2 different automotive shops to fix my brakes. One did the front and another did the back.

ATTmosphere which I believe is a division of Aralast or at least somehow related to them is for all Alpha1 sufferers..not just Baxter/Aralast Patients. Jules from there advocate program was an absolute godsend. She helped push through self- infusion w/ my health insurance provider. I have been so frustrated w/ Homecare. I have had 2 successful self- infusiopns in a row and have been able to have my infusions at a consistent time! Plus, it saves about $8,000/ yr insurance cost. I don't have to worry about procedure not being followed properly..I. E. no Benadine(sp?) used before insertion of needle or no small bore attachment being used or worse yet overall procedure & common sense not being followed/used.

Although, I am not likely to post much for the next 3 - 4 months(busy schedule) life for the most part is going in the right direction.

LIFE IS GOOD!!!

I Never Noticed....

I never noticed the stories about cancer survivors or transplant recipients till I was diagnosed with cancer this summer. Well, actually I did but, they didn't effect me like they do now. Granted I've always felt like I was a caring sensitive person who tried to help people... but, I never used to get this emotional. Did I mention tears run down the outside of my face when I read remarkable survival stories???

I just got done reading the Len Geiger story in the Sports Illustrated archives. I think it was "the life of Reilly" archives. Anyhow I sat next to Len Geiger one of the two award nights at the National Alpha1 Convention 2007. I didn't really know who he was then but, I can tell you two things: one he may still be a salesmen but, secondly and more important he totally and completely embraces life!

Augmentation, Work & an Orphan

Well, I am on my third nurse from the homecare outfit. I handed her the procedure sheet for Zamaira and she didn't even look at it. She said "Let's get started mixing it!" Can you hear me groan? Given my record of blown veins. I told her "No, you get that started(my IV) and then we mix. The mix goes bad after 3 hrs!" She didn't follow procedure. She asked me when I switched from Prolastin to Zamaira. I had to tell her I've always been on Zamaira. My sister uses Prolastin. I called Accredo afterwards to speak to the top boss. I told her what had happened and she didn't sound any happier than me. She didn't know that they were changing my nurses. I then asked her "How much trouble will I get in if I do my own IV?" She said "Sue felt you were capable of doing your own just make sure you soak your hands in as hot a water as you can stand 10 minutes before you try to start your IV." I also happen to know that a hot shower before hand helps equally as well(that's my sisters preference).

Now on to work. I worked 55hrs last week. We lost power for 1.5hrs tonight so, I expect to work 55hrs this week. I may even be working 50hrs a week well into the new year. They just introduced a new window product line that has been well received but, we have bugs to iron out and production to catch up on. I am hoping for a non-windy & non-rainy day to do the brakes on my pick-up....but, I may have to pay my mechanic to do them at the rate I'm working!

The orphan was a 3 -4 week old kitten. It was the cutest most lovable little guy. Some people should never be allowed to have animals...what a cruel thing to do to a kitten not weaned yet!!

I came home last Thursday and I heard this horrible meow. I thought "Oh, NO! I've accidently run over one of my cats." It turns out that it was an orphan kitten but, I couldn't get close to it till Sunday. Once I could it clearly had eaten food that didn't agree w/ it's system. I was able to grab the kitten and bring it inside. I had bought premium milk replacer from the vet earlier in the summer to feed 5 kittens of one of my cats who was killed. I was able to save 4 of the 5 kittens.

I started feeding the orphan milk replacer w/ a syringe. That didn't seem to sit well w/ it so, then I had gotten a free can of cat food in a bag of dry cat food and I decided to try that. Yesterday morning I realized that wasn't the ticket either. I then gave it pepto bismo. Now to some of you that might sound outrageous but, I have friends who dairy farm and they keep that on hand for their cows w/ upset stomachs. No farmer wants a milk cow to get a DA. The kitten spit out most of it. I went back to feeding it milk replacer and I thought as I left for work he'll probably be dead when I get home from work....If he isn't I'm going to call him "Lucky". To my surprise he was still alive and felt stronger when I picked him up. I thought we've got this licked. By the time I left for work this afternoon I thought he wasn't long for the world so, I tried to make him as comfortable as I could. When I came home he had crossed the rainbow bridge. I do wish I had tried to feed him pepto bismo again but, I didn't think I had gotten much if any down him. Though I didn't save him...at least I know for next time.

Although, I accept I can't save every animal it's never something that doesn't still bum me out. I worked for a guy named Duane 20yrs ago out in OK. As we were gathering cows for milking he said to me as we were walking, "It took me the longest time Katie, to realize I couldn't save every animal. You have to accept there will always be some no matter what you try you will lose. I always used to think I could save every one of em."

So, I'm a busy little beaver, who's a little bummed, very tired and a little bit cranky!

One Foot, Two Foot

I stopped over in Bruce tonight to eat and I started talking to one of the owners. She didn't know I had cancer earlier this summer nor did she know I had this alpha1. She asked me with my health condition was marriage possible for me. We then launched into a discussion about intimacy.

We can either tell ourselves we can only go one foot or.....we can tell ourselves we can go two foot. As an Alpha I choose to believe I can go two foot. I'm too scared to sell myself short because I know others out there will out of concern for my welfare. I have on ocassion sold myself short though. It's usually in terms of relationships. Every now and then I tell myself that I shouldn't date and I can come up with one of the longest lists in the world.....then I'll wind up reading an article like the one I read in a pamphlet I recieved at the Hike For Healthy Lungs. It said even when you have COPD(alpha1 is a form of copd) intimacy is still very doable....then I think "Why you smuck! Well, of course it is!!" Or I'll read an article about a couple that marries even though she is on oxegen. It still happens folks! Love knows no boundaries. And...Yes, by most married folks standards(and some singles)....it's still a wonderful thing!

The same holds true for exercise but, I'm really good at telling myself I can go two feet when everybody else tells me I can only go one foot. There are days when I can only go 1/2 foot, other days I can go 2.5 feet but, most days I go somewhere in between(usually 1.5 ft) The days I exceed expectations are the days I savor & relish!! They are absolutely AWESOME !!

It's flu season again!

I want to remind newly diagnosed alphas out there that it's very important you get your flu shot yearly and keep your pneumonia shot up to date....if you don't you can be declined a lung transplant. It's equally important to keep on your maintenance meds as well! If you do not keep using them you can also be declined a lung transplant last time I read up on it. If you can't afford the maintenance meds let anybody & everybody know...you'd be surprised how others will help you find a way to get you the meds you really need. I haven't gotten my flu shot but, it is very much on my wish list of things to do!

I've been working unusually long hours and have had some personal matters I felt compelled to attend to. I just went into urgent care today. I was put on a course of 5 pills of 500mg azithromycin and a second course of prednisone.

I can't hardly wait for this next paycheck to roll around....I can renew my Body Shop membership and start reconditoning my body. Then it's onto setting up my Gary Fischer bike up on my Kurt Kinetic trainer so, I can begin training for the Team Alpha1 Lake Front Bike Trek next June. WooHoo!!

I also think I wouldn't mind taking a stab at "The Dare" or "The Horribly Hilly"!

That Darned...RoadID!!

I got that wristband type RoadID...and I've taken it off to wash it,take a shower or something and not put it back on my wrist/on my person someway before I've left the house at least three times already!! I think I need to get a shoe type RoadID pretty quick!

Drum roll, pleeeeease! "Big Tony" is on board for the Crazylegs health walk with Michelle, Marilyn & myself this coming spring. GO, TONY!!

BTW, Marilyn....Tony says you're the bomb! He's very excited that you agreed to do it and he'll get to see you!!

Just call me froggy!!

Well, I returned to work Wednesday and clearly wasn't really physically ready. I was still running a low grade fever. My boss asked me if I was free to go back to work with no restrictions....I told him that's what the paper says. I went to SDL and one of the ladies over there said that I didn't look so good and said I could sit down doing one of the jobs over there. There were a lot of people out sick with respiratory bugs/flu. They were very glad to have a warm body into work!

WOO HOO!! I had a successful infusion Wednesday, too!!! On the first stick no less!

Becky came over to SDL(from my normal work area) Thursday and made the remark: "Katie, you look so much better than you did when you first came back to work. When you first came back to work you looked so woreout like you just couldn't get back into the swing of things. Haggard." So, I guess between all the stress, others with respiratory bugs and the 2 weeks of missed infusions...It all caught up with me.

Now back to the title! I sound froggy, raspy and am still coughing a good bit. The coughs are still wracking my body but, not like they were earlier in the week. I used two vacation days to make up for the lost time and worked voluntary 10hr shifts(9 hrs was mandatory) to offset vacation pay(which is 8 hrs a day no matter what shift you work) and hourly losses earlier in the week. We are on mandatory 10 hr days this coming week which I am eternally grateful for.

I also have thought to my self there is a lot of alpha1 knowledge I have that I haven't placed somewhere in my blog and wonder what people who read this would like to see....I just want to make it better and help empower other alphas in their fight for quality & quantity of life!


IF THERE IS SOMETHING YOU'D LIKE TO KNOW...POST IT IN MY GUESTBOOK!!!

(Along the sidebar on the right )

Pennies from Heaven, etc.

Last Thursday was pennies from heaven day since my health insurance company reapproved my augmentation therapy.

Although, I didn't get to spend as much time in Chicago as I would have liked....I still enjoyed it!! There's a kind of energy or vibe down there I always sense. I ate my heart out seeing all those sailboats out on the lake during the Hike For Healthy Lungs. It was beautiful sailing weather Sunday in Chicago. It was a real treat to meet Mr. Mary(Todd) Pierce. It turns out he use to be into sailing so that helped ease the pain of not being able to be out sailing. I was able to discuss sailing.

I've come down with a lower respiratory infection and have been put on really strong medications(levaquin & prednisone). This respiratory infection is as bad or worse then the one I acquired during Strictly Sail. I expect I picked up my respiratory bug from "Junebug" at work. I had originally thought it was a changing of the seasons/pollen issue. I've used 2 vacation days so far because I am sick. I ran almost 100 degree fever yesterday that finally broke this morning. It sneaks back off n' on though. It's definitely not as bad as it was yesterday though! I feel really lightheaded and wrung out. At least I'm still having a conducive cough, though. Every alphas worse nightmare is an unconducive cough!

I get another nurse from Homecare to help with my home infusions. My insurance company doesn't want me to self infuse. The case worker doesn't see how it's more convenient but, is learning going somewhere to have it done is no cheaper. As much grief as this is all causing me....I'm to the point I'm ready to switch over to prolastin at the first of the year and have it done somewhere such as a hospital or clinic. I've spent 3 months fighting the good fight and I'm tired of it. If I lived in a more densely populated area I think this situation wouldn't be playing out this way but, I'm just to far out in the middle of nowhere for accredo nurses to serve me. Every augmentation therapy has it's pros and cons....don't let any drug rep fool you. You have to weigh them out for yourself. just like when you go shopping for a car. I did not choose Zamaira for it's "purity". I chose it because it took less time to administer and it didn't need to be refrigerated. I wanted to learn to self infuse so I didn't have to miss treatments when I traveled and so I didn't have to drive out of my way for treatments(spend $6 in gas a week). Plus, it would have saved approximately $8000 /yr slowing down reaching my medical spending cap.

I have been drafted for a Team Alpha1 bicycle event the first week of June down by Lake Geneva. My friends Michelle & Marilyn have agreed to do the Crazy Legs health walk with me next year. Maybe even my buddy big Tony might even do it with us! Henry "9 lives" Eckert has agreed to do the Madison Paddle & Portage event with me. I just hope he remembers that I don't have as robust a set of lungs as he does when it comes time for the portage aspect of the event!!

Quote Of The Day:

The only disability in life is a bad attitude.

author unknown

I need my head examined or is it...what I like best about my fitday?

Because having a public diet and exercise journal BITES!! People get to see the real me...warts and all! All joking aside, I'm really glad I have my very public fitday for two reasons. For one it motivates me more to walk the talk than talk the talk. Secondly, it lets those of you out there that are struggling with your alpha1 and what you know you should do realize you aren't alone in struggling to change your ways!

What I like best about it is that I used to count my every calorie burned while working out, mentally keep track of it and then I would check my weight before and after I worked out. I used to just absolutely drive myself nuts trying to lose weight so I could breathe better and so when I went on augmentation therapy it would be cheaper. I have this friend "Miss Confidence" who I have been friends with since what seems like dirt(8th grade track) who is just skinny as a rail and very serious about her diet. She works out at the same exact time pretty near every day! She fell off the wagon for a while. She's back on track w/ a workout partner. All n'all she's pretty dedicated. I actually think she is as skinny as she was in high school. I don't think many of us nearly 20 -25 years after high school graduation can say that! I hope someday I am as dedicated as her. I met up with a friend uptown tonight and he commented he thought I had lost weight in the face...I told him it was probably from the 2 mugs of coffee I had today. I don't think 2lbs is going to be that obvious!

I went to Wal-Mart tonight and bought myself a new thermos so, I could bring coffee to work to get that caffeine fix! I also bought creamers so I new the exact calories. I think the fitday version isn't very accurate. I still plan to take water bottles to work as well as coffee. I want to try to drink half my weight in ounces of water. I also bought wally world cereal bars for 3 reasons: higher in protein, lower in calories and lower in prices. I also bought the unthinkable....I bought grape jelly for P & J sandwiches for my evening meal. I swear the economy jars in college were larger!!.

I've decided I'd try to do things the way my great grandparents on my Dads side used to do it. Years ago the older people that knew them up here used to tell me they had there big meal at noon and their small meal in the evening. It's only an experiment but, I think it will be interesting to see how it plays out as my great grandparents never looked overweight in most of the old pictures I've seen of them.

Yeah!! I have the right kind of release slip so, I can go back to work tomorrow!

Greetings From The Windswept Hills of Northern Wisconsin!!

Here I thought I was going back to work today.......except for one small thing. I didn't have a release form that said I had no restrictions. I went to the office and asked HR if they had one. Then the HR lady called my plastic surgeons office at Mayo only to discover she was in surgery....hopefully I will be able to return to work tomorrow. I stopped by the feedmill to buy apples that are seconds to make applesauce and apple butter but, they were eating/apple cider apples. Different kinds will come in later in the year thankfully!

The upside to not having to work tonight is I hopefully can get caught up on rest! I stayed up way too late last night downloading printer software to my puter' so I could use it with my laptop. I needed to print a PDF of a HIPAA release form to sign and FAX to the Alpha1 Foundation. Plus, I also wanted to printout a job app for the local ski hill to pick up some extra cash to help me pay down debts accrued form being off work for two months. Short-term disability is not quite two thirds of my normal income. I'm trying to keep up on my fitday at least but, I've been slacking.

I got registered for the Join the Journey walk this coming Sunday. I hope this is the first of many affirmation walks to come. It's funny I told my close friends and family before they even performed surgery.....when I'm cancer free I intend to do a affirmation walk for a different cancer organization each year. I wasn't even sure what I meant by that when I said it....until I was asked to define it! My definition was: to give affirmation to those who have lost loved ones to cancer or have loved ones fighting cancer that there is hope and what they are doing does matter. I should have also included those that are fighting cancer as well!! When I did the RCU walk there was a lady walking in the same event I was that had obviously gone through chemo and I thought to myself .....Good For Her!

A Bad Day...With a Sweet Twist

I have been struggling with with insurance companies. This morning started out with me stopping by the local clinic to get some medical papers I had requested yesterday. They didn't have them ready. Grr!! I get about an hour and a half down the road. My cell phone rings and the lady is asking if I'm going to pick up my lab records today. I tell her I'm enroute to Rochester. I'll have to pick them up tomorrow. I get to the Hardee's in Baldwin at noon. I try to order a grilled chicken. The drive-up lady could barely speak english and could understand it even less. To make a long story short I didn't eat grilled chicken. I called Dr. Krowka's medical secretary and used a colorful metaphor(in reference to the insurance processing dept's consistancy in botching getting proper medical info to my insurance providers in a timely manner). She said "If you -----, I'll have to hang up on you." I then rattled off to her everything I needed. First she said I spoke to fast. Then she told me Dr. Krowka would have to see it. He was booked sold all day and she couldn't guarantee she could catch him.

I filled up with gas in Red Wing and decided I better get some form of sustenance before I arrived at Mayo. I get there late & have problems finding a parking space. I get into the subway and realize I forgot the letter with all the info listed my health insurance wanted. I need to get to my appointment. I try 8th floor. Then I try 10th floor. Then I give up and ask someone which floor I need to be on. You would think I would remember by now! I've been there enough times.

They direct me to 12th floor. Twelfth floor is COOL! It has computers w/ internet so one can go online while you are waiting. I check my blog and notice a comment. My name gets called so, away I go but, not before I have read enough of Breathinsteven's comment to be uplifted!!

One of the questions I asked Missy(the nurse) today was...since I have had cancer....Can I donate my organs???I had the donor sticker on the back of my drivers license since I was eighteen. I had spoken to somebody at OST/Bodyshop who had skin cancer removed and was told she could no longer be a donor. Missy said "I don't want to tell you the wrong thing. You need to call the organ donor number and ask them. I do know you cannot donate blood." She tells me I will have probably 2 more breast expansion sessions and then we will wait four months for my reconstructed breast to settle. I also asked her if it was ok to have a racing sailboat tattoo put on my reconstructed breast. She said"You just need to be careful because of the implant"....I figured since I was going to have the areole tattoo on what's one more tattoo. She went onto say that some women completely forgo areole's. In fact one women loved flowers and had a big flowery tattoo put on in place of a tattooed areole.

I then went back to my vehicle to get my paper. Then I went to the breast center to get on a computer to get a FAX # in my email. Then I proceeded to set my keys down by one of the computers in the breast center and head back up to Pulmonology. I get there and they are not too happy to see me but, they oblige me. Dr.Krowka's secretary speaks to Dr. Krowka about talking to me. I sit down with Dr.Krowka and show him the paper. He realizes indeed I do not have all the medical info needed and I wait for the necessary medical records and other info.

I then went down to the business office to request papers for medical expense assistance and to see where they were with my credit union short term disability(yes, I'm still making payments on loan/credit card bills). After that I went to an Indian restaurant.

Life is good and organ donation is SO IMPORTANT !! Those organs aren't going to do you any good when your dead but, they could do someone else good! You know the people who need organs .....could be your spouse, your sibling, your best friend, your parent or your child. They aren't always somebody else's!! Don't forget cornea donations either(because someone did that my late Mother was able to see as the result of receiving one after a bad cataract surgery).

My attitude is definitely evolving...

The other day I started to think about how Roxanne had said " It's not if you go into remission ...it's WHEN you go into remission!!" when I had my cancer scare this summer. For the last year and a half I've remarked and believed "I'll never win the lung transplant lottery. It's like finding a needle in a haystack!" I realized receiving a lung transplant is no different than going into remission from cancer. Attitude is everything!

My friends have heard me saying more than once "Attitude is everything in anything!"
Why I couldn't apply it to a lung transplant is beyond me. I had no problem believing LVRS was within my reach.

Anyone of us who gets put on a lung transplant list can have the right match. I've met enough lung transplant survivors to realize that. You can look at the transplant waiting lists but, it doesn't tell the whole story. And guess what....the people I've met they've been regular people. They've not been independently wealthy. What they have had is a strong emotional support network. There was a local eye doctor they had a fund raiser for so that he would have enough money for a heart transplant(believe me the county population is 15,000 and it's the poorest county in the state of WI). Given this realization I have chosen to believe It's not if I receive a lung transplant. It's....WHEN I RECEIVE A LUNG TRANSPLANT!!

A good atttitude will serve us well, in two respects:

- it will make our life more enjoyable

- if we chose not to have a negative atttitude we won't get depressed and lower our immune
system which will make us less prone to illness/lung function decline

So grateful...yet, an ungrateful brat!

That would be me! Thank you to those of you that participated in the cancer talk poll.

I am so grateful to have the cancer gone yet, it bugs the heck out of me that as a result I have become so deconditioned!! The fact that I was so well conditioned helped me recover sooner but, because of surgery I could not do hip dips, ab crunches, bike or lift any amounts of weights.

I really am a brat about this. I stopped by an older friends house the other day and we sat down at her kitchen island and she said " I love the fact that you say" WHEN I had cancer!" It wasn't "Geez Katie, you've gotten so out of shape!" It was more "I am so glad you are alive!!" How many people with cancer can have as quick and easy a trip to remission? I suspect not many. As an Alpha though I worry because I've become deconditioned that I will approach disability quicker because of it. Am I being reasonable...likely not! As an alpha though one just naturally does worry about such things.

There is one thing I am grateful for second most to the opportunity to be cancer free. The fact, I was interviewed by the Alpha1 Foundation for a feature peice for their website!

I had recently sent an email to someone I graduated high school with. I told her about the interveiw and what the article in Alpha1toOne about Mary Peirce & Shirley Dennis did for me.

I had been diagnosed with Alpha1 for almost 3 years before I foundout that I would have to go on augmentation therapy(which is a FDA approved, rest of your life procedure) because my lungs were in such a severe state of decline. For those first three years I halfway took alpha1 seriously because I really wasn't noticing much difference in what I was and was not able to do. I had begun to see how badly it was affecting my older sister Johanna's quality of life. When I got that report from my pulmonologist I had this perception that all the joy, pleasure and even intimacy was soon to be a thing of the past. I felt like I had unknowingly stepped out in front of a freight train w/ the throttle stuck wide open and about 4 or 5 months later I realized that. I wondered "Did I peel my body off the front of that freight train or did some compassionate strangers?" Somewhere towards the end of the absorption of the effects Alpha1 disease would have on my life that article came.

Mary talked about how Shirley had biked in a long rainy trek with a oxygen tank strapped to her back. She also mentioned that you need to do your part too, in order to fight the disease. That was such an inspiration to me....to inspire another there is not much greater gift another human being can give to another! Hope is the most inexpensive as well as most powerful weapons anyone of us has no matter what we are fighting or going through.

I hope I can pass on the gift of hope that Mary, Henry, Trina, Len and a host of others has given us!! I look forward to being interveiwed by other people/organizations in the future.

The long awaited day has arrived!

Our soldier boy Morgan arrived in the states yesterday. I am off restrictions for the most part as of today. WOO HOO!! In otherwords, I can ride my bicycle but, not on long rides. I think that means I can't do 20+ milers. I am still battling it out with health insurance associated with my augmentation therapy as well as short term disability insurance through my credit union insurance provider. Is doesn't help that Mayo's insurance department is slow as a snail and I DO MEAN SLOW AS A SNAIL!!

Due to the fact I'm starting to stress over the insurance & bills I've decided to get busy with numerous projects till I return to work after 9/10/07. Worrying about insurance is fruitless. I know there is nothing in my control that can be done at this time to expediate the insurance issues. A distracted mind and busy hands is my cure for worry. I likely won't post much in the next few months unless I lose my job(which lets hope doesn't happen).

Yesterday, I went in to urgent care. I gave a sputum specimen and they said they will grow the cultures as long as they will grow to determine what bacteria I have in my lungs. I think most of my lung issues right now are due to the humidity as a result of all the recent rains. I was able to deliver information about the Alpha-Pack and alpha1 to the doctor who said he would copy and email it to all the Marshfield clinic pulmonologist and family practice doctors.

I also got signed up for the Chicago Healthy Lung Hike at Montrose September 23, 2007. If anyone would like to donate to the cause....I am part of TeamAlpha-Alpha1 foundation . From all the money raised by TeamAlpha seventy-five percent will go to the Alpha1 Foundation for research, detectiton and awareness programs! If anyone would like to walk for team alpha...by all means do so, too!

Greetings from the rainforests of Wisconsin!

I haven't posted much as their hasn't been much to tell. I'm still on a 10lb weight lifting restriction. I forgot to ask if it would be ok for me to ride my bike. Hopefully, after tomorrow it will be okay(if I can remeber to ask...I forgot last time). I've been busy picking blackberries and believe it or not last week it made my right arm pretty sore but, this week I have notice quite an improvement in tolerance and movement in my right arm! I read parts of Deep Survival. I also skipped around reading that book about that Park Ranger who disappeared by Yosemite back in 1996. DO NOT read the back of that book about Randy while alone at your cabin(which is over a mile into the woods & out of phone range) late at night alone! There were parts of it that gavc me the creeps!

I told the insurance lady at Accredo that I wasn't ordering anymore augmentation therapy product till they got everything straightened out with my health insurance company. I've begun being billed for my cancer & breast reconstruction surgery before my augmentation therapy(which started 3 months ago). Caring Voices Coalition was to help me with my copay associated with my augmentation therapy(which was to the tune of over $4000 assistance). It's not that I don't want/dislike my choice of augmentation therapy. CVC is only going to help me out with bills associated with the augmentation therapy and Accredo needs to develope a smarter mouse trap for health insurance providers. I was told from the get go I was approved by my health insurance company. The insurance lady at Accredo told me(and I believe her) that she asked them repeatedly if they need to pre-certify me. They told several times no. No alpha should have to go through this kind of additional stress! I am officially in remission but, I have to save worrying about treating/paying for treatment/surgery for two diseases SUCKS!! What gripes me more than that....is two nurses working for my health insurance company determine whether a proceedure or prescription is neccessary . Most nurses no little or nothing about alpha1 and one really needs to see some yearly/bi yearly PFT results before you will really know whether augmentation therapy is neccessary! No offense intended towards my new nurse but, she didn't know what it was(she was honest with me and said "I'd never heard of it before and I asked my colleagues about it. One of them said they'd heard of it before).

I really want to encourage alphas out there to try to educate people about ialpha1(make others aware). Ways that you might try is through local schools AODA officer, PTA's, school newsletters/newspapers, newspapers and various other media. If you are healthy enough or have some close relative willing who participates in fitness walks or bike treks try to contact the Alpha1 Foundation and see if they could put you in contact the Team Alpha1 coordinator and see about getting a team Alpha1 bike jersey or t-shirt to help raise awareness/funds for research.

A Better Day Has Arrived

Yesterday Lucy and I went solo. Between the two of us we managed to blow through my veins 3 times before we called it quits. She said that my body would absorb the fluid and I would be able to stick myself in the same areas by today. Since her daughter was flying in from Italy today she had to get a coworker to come out today. .....It truly amazes me how many people I know that have children that have married someone in another country and chosen to live there. I went to college with a girl born in Italy(and now an American citizen) and I have to say I think I could handle living in Italy but, I'd sure have a time mastering the language I would think.

I got it the first stick but, I shook like a leaf during half my infusion. I was petrified I'd blow the vein. The fact that I was able to stick myself without blowing a vein today is such a huge relief!! The substitute was a very hands off nurse which helped I think and as she said the goal is for you to able to self-infuse.

Tidying up the blog is going to happen

I spoke to a prominent individual in the Alpha1 community for a short time this morning. I realized I need to be more aware of privacy issues. I simply don't get into it when it pertains to me because too often things I've said or done have been misconstrued which I have then had to spend time straightening out. I live in a small town rife with gossips. Of all the things ones reputation is the most important.

Other realizations have occured as well. I've been really bored and I tend to be posting a lot of nothin' so, I've decided when I get back from my visit to Mayo instead of going to the cabin for a couple days I'm going to sequester myself there for about 5 days. I would make it 6 but, I have to be back for an infusion.

Some previous posts on my blog will be either deleted or edit(if I can figure that out).

FAQ: Pulmonary Rehabilitation

If you have an FEV1 below 50% it's frequently recommended you participate a Pulmonary Rehabilitation program. The thing you need to know though is....not all pulmonary rehabilitation facilities are created equal.

Why should you go through Pulmonary Rehabilitation?

-it may help you remain working

-it may help you remain independent

-it may increase your quality of life

-it may help you stay of oxygen

What should I know about Pulmonary Rehabilitation?

-California has the most progressive pulmonary rehabilitation schooling

-you need to look for a pulmonary rehabilitation facilitiy where the staff continually update
their pulmonary rehab knowledge

-just because a medical clinic is progressive in one area of services they provide does not mean
they are progressive in all areas of service

*An excellent example of great pulmonary rehab facility and staff is Karen Block's Endeavour
Pulmonary rehab facility in Mequon, WI(sp?)*

Do your homework!! Your lungs depend on it!

It's heating up in the Northwoods!

Thankfully, not too bad!! We're only in the high 80's. By the weekend I know somebody who's going to load up her truck and head for the woods. It's usually about 10 degrees cooler down at the cabin vs. here at the farm. I have no AC in the house.

Last night I felt a round lump where the breast reconstruction area. It was pretty tender and I became concerned. I called to speak to Missy again at Mayo. They were in surgery today. I stopped by a nurses house in town in the mean time and she wasn't particularly familiar with breast expension implants but, she said she thought I shouldn't be too concerned. Missy called back and said it was likely the magnet in the middle had shift(but, of course she could say for sure without seeing me). She reiterated several times don't get uptight about it or you will make matters worse. She also said this wasn't a pain free procedure(breast implant expansion). I can hear the groans out there!! You're thinking..."You're going to tell Kate to relax...what a joke!" I'm trying to not get uptight I promise!

I am very much looking forward to Friday. Thinking good thoughts. Utmost is that the drain is going to come out!!

This just isn't my day....Sorta

I didn't get my drain tube out today but, it's a good thing! Missy(the Mayo nurse who works with Dr. Walch{plastic surgeon}) said that if they remove the tube too soon fluid may build up that my body won't asborb. It's then followed by an infection and I'll lose the implant. ....I can wait. I asked Missy many questions. One of those was which doctor has my short-term disability papers. I am rescheduled to go to Mayo on Friday and Have a 2pm appointment. They do not use FAX at Mayo. It has come to my attention that some companies(especially lawyers & medical organizations) prefer the real McCoy signature of an individual. I got a call late in the day from someone from Dr. Degnim's office(breast surgeon). She apoligized for them not processing the STD paperwork sooner but, Dr. Degnim was gone last week. I had been hearing 4 weeks off for so long and I told them there was no such thing as a light duty job where I work other than one that exposed my lungs to fumes from primer. I would need to be off 6 weeks. I foundout today the minimum time one can be off w/ a mastectomy is 6 weeks. Due to the setback with my drain tube my return to work date has changed! So, instead of going back to work the last week of August I will return to work September 10th,2007. She also promised to expediate it ASAP. Hopefully, by next week Friday I will see a short term disability check.

In other news I spoke to Virg at Barney's where I have rented a meat locker. She said not to worry too much about paying up due to STD checks not coming yet....just empty your meat locker so Don can proceed w/ remodeling! I also spoke to Cory Muller of CSL Behring and he is going to get that Yoga Mind & Body book to me soon! He also believes there is a very good chance I will be sponsored again next year to attend the Alpha1 National conference.

I thought of a few more things! Hey, Mister Morgan!

...Mister Morgan is our family soldier boy in harms way over in Iraq. He doesn't do email right now by choice. He does chatting. Internet chat and phone calls to his Mom. The info I want to share with him will be my closing topic!

When my sister Mary was going along with me to one of my all day appointment/tests days...we were walking through Mayo's subway from the Damon parking lot. I had to tell her I couldn't walk as fast as she was. I think that was the first time I ever had to tell somebody that and she's 10+ yrs older than me. I'd always wondered how that would effect me some day. Oddly enough, it did not bother me but, I suspect it might have bothered her(I do concede that it was kinda humid in the subway though and subways are great for stale air).

In thinking about that...I also thought about the fact many of the girls/women my age could do circles around me walking or biking but, the fact is I realize I can still enjoy those activities inspite of that fact. Those activities help me physically continue to cheat the oxygen tank and they help me mentally, too! I also have realized I STILL WANT TO TRAVEL AND STILL FEEL LIKE I COULD ENJOY IT!!! I want to see Austria, I want to see Switzerland, I want to see Scotland, I want to see Greece and I want to see Ireland. I'm sure there are others I will think of but, WOW what a sweet realization!!

I also have it set in my mind next year I am going to buy a piece of land and build a healthy handicap friendly house on it. Now, I did want a particular parcel that is about a mile from where I currently live but, I think it would finacially be too much of a stretch. There is another parcel that is 30 acres just a couple miles from the cabin and it is over priced IMHO. I feel like the land prices up here are softening and it will still be on the market next year. If it isn't I'm sure there will be another parcel somwhere within my means.

Mister Morgan....I thought of our discussion after I spoke to you when your Mom & I were leaving Rochester last Friday. 1) It was awesome to get to talk to you!! 2) Numerous people have said " Nah, Katie! YA GOTTA go to Strictly Sail!! You love sailing!"

So, I've thought about it. About that time, my inheritance money from Grandma will be rolling over. I invested it in cd's. I would be using a small percentage of the interest from it to pay for me/us attending Strictly Sail. Strictly Sail isn't that expensive. I/we can stay at Jones on Friday night but, if you do you're going to have to be able to dress "dressy casual" because it is my understanding they would like to take me out to eat somewhere respected. I still would like to stay at Chicago Red Roof Inn Saturday night because it's like 1/2 mile from Navy Pier. I got really tuckered out last year after staying there at Navy Pier all day! It's a cinch driving around Chicago on weekends, too!

I Just Really Haven't Known What to Write...

I sat down several different times and signed in but, there didn't seem like much news to tell. I didn't want this blog to be more about the cancer than alpha1. I actually feel a mixed bag of emotions when I can be classified as a cancer survivor yet, I was able to catch it at such an early stage. On the other hand you can't really respond to cancer treatment in the same way that someone that doesn't have alpha1. I didn't initially realize that myself until I started to read that Mayo womens cancer book given to me by Join The Journey. I was ready to go full steam ahead with radiation until I read one of the personal stories in the book!

I had also wanted to mention about the Minnesota bridge collapse but, had been too tired to respond. I didn't know about it till 9:10 PM that night when I turned on my radio. My sister, husband and two daughters live near there. I immediately tried to call to make sure they were all ok and got a "All circuits are busy" automated response. I finally got through to my sister Johanna and she had gotten ahold of Mary right away." She knew that 3 out of 5 of them were ok. Mary's older daughter wasn't a big concern was my understanding but, her son-in-law worked on the north end of the city. Johanna figured if something had happened to one of them we would have heard from her.....as my Dad used to say "No news, is good news!". I feel for those who have lost loved ones to the MN bridge collapse.

My old nurse and my new nurse had friends that normally use that bridge and they either didn't use it that day or they crossed before it collapsed. My new nurse Lucy, doesn't have quite the nerves of steel Sue does BUT, she is developing them. I'm the first patient Lucy has ever had that sticks theirselves and is working towards completely independent self- infusing. Lucy keeps saying she is SOOO, impressed!!

I thought about when the Oklahoma City bombing happened and it seemed like it took 3 days before I could get a hold of any of my friends down there to verify they/their loved ones were ok. I can't express enough how valued my friends from college were/are to me! The last semester at Eastern Oklahoma State I had to bum a ride to McAllester once a month to go grocery shopping. I would have starved to death if I had bought groceries from Roy's Cardinal Food in Wilburton!!! I had taken liability insurance off my truck so I could pay my 3rd semester bill in order to be able to enroll for 4th semester classes. I have to laugh! I doubt if anybody I went to high school with would believe I ran for president in college or was a student senate rep. Not to mention the various other club officer positions I held that I can't remember anymore! Being on soils judging team at Eastern was surprisingly enough...pretty neat!

I've been pretty freaked out about lymphydema until my old nurse Sue talked to me about it before she left this last time. Lucy will be on her own with me this next week. Hopefully in four weeks I'll be completely independent!!

I still haven't gotten my drain out from surgery. I just can't seem to get down to 30cc fluid in two days. It's really starting to irritate me physically(the drain around my expansion implant)!! I'm anxious to get permission from my plastic surgeon to ride my bicycle again! In the mean time I plan to get my Palm set-up, a guest book, main page site counter on my blog and that Road ID link setup.