The Top10 Things You Should Do If You Test Positive For Alpha1

  • Have A List Of Questions When You See a Doctor About Your Alpha1(If you try to remember the questions you want to ask you may forget half of them)
  • Learn To Breathe Effectively
  • Limit Or Eliminate Your Alcohol Consumption
  • Don't Be Afraid To Be Proactive About Your Alpha1
  • Get Plenty Of Rest(You will likely have a higher oxygenation level)
  • Avoid Sick People(You have a lower immune system than most people)
  • Drink Plenty Of Water
  • Eat Healthy/Avoid Processed Food(Carbonated beverages)
  • Start A Careful Exercise Program/Pulmonary Rehabilitation Program(Your muscles will become more efficient so they won't use as much oxygen and if you have surgery you will likely recover quicker as well)
  • Stop Smoking

Wednesday, December 31, 2008

The Road Not Taken...

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

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

It says it all.

Four Wheel Drive Trucks Rock....Firing Somebody

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

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

Monday, December 29, 2008

FYI: Teeth & PSA's

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

PSA = public service announcments

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

Shot In The Dark Method

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

Friday, December 26, 2008

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 ________."

Thursday, December 25, 2008

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!".

Saturday, November 29, 2008

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!

Saturday, November 15, 2008

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).

Tuesday, November 4, 2008

Tomorrow's Election Day...

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

Wednesday, October 29, 2008

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)!!

Wednesday, October 1, 2008

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. it evr quick!!

Friday, September 19, 2008


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).

Saturday, August 23, 2008

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, 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!!!

Thursday, August 14, 2008

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!!!!!

Wednesday, August 6, 2008

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!!!

Sunday, July 27, 2008

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.

Thursday, July 24, 2008

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 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.)

Sunday, June 29, 2008

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.

Sunday, June 8, 2008

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

Saturday, June 7, 2008

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).

Sunday, May 11, 2008

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.

Friday, May 2, 2008

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

-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 &'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!

Friday, April 25, 2008

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 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.

Saturday, April 5, 2008

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 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.

Monday, March 17, 2008

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( 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!

Thursday, March 13, 2008

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 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 will be somewhat limited due to anticipation of working as the general contractor of the building of my future home.

Saturday, February 2, 2008

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!!

Saturday, January 12, 2008

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!


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!

Thursday, January 10, 2008

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.