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

Thursday, June 21, 2007

Sailing Is Awesome!

I didn't know what to expect. I've driven a big twin engine motorboat on Lake Superior when I was 11 & 12. I grew up snowmobiling & motorcycling. I've downhill skied, cross country skied, ice skated, water skied, roller skated, roller bladed, showed and rode horseback. It was like every fun & exciting thing I had ever done in life wrapped up in one sport(after I got beyond fearing we would capsize every time the boat would heel). I just can't begin to describe it. It's magnificent, exciting, relaxing, invigorating. It's just totally amazing! When class was over I didn't want to leave the lake. As we were heading for the slip my instructor said "I didn't know how I was going to teach you when you told me you had problems with wind. Then I thought maybe I could relay it to you. And then I thought...Wait, she said she had just completed a 38 mile bike ride a month ago! She'll be fine."

It was a good thing I did though! I got to my truck, looked at my face and thought to myself....You're gonna pay girl! I had remembered to put sun screen on my arms but, not my face. I didn't pay too much in spite of indiscretion, I guess it mostly was due to the wind.

I've been really tired lately. That's why I haven't posted much. I am glad my appointment with Dr. Krowka is coming up this Friday. I also have a mammogram scheduled(I had one scheduled in Rice Lake but, forgot about it). I begged his secretary to see if I could at least get one taken because if it's part of my schedule of appointments at Mayo I won't forget! I also have a PFT and a chest x-ray scheduled. Hopefully he will be able to determine more than the Marshfield Clinic doc's in regard to what's going on with my lungs. I just can't believe that the heat & humidity is what's causing my extreme tiredness. I was forgetting ready about & helms a lee towards the end of the sailing class and had to pull over to the side of the road and take a power nap at Poskin. For about the last 2 months I've gotten about 1.5 - 2 hours down the road on a trip and become so tired I had to pull off the road to take a power nap.

There will be no Alpha-Pack support group started in Eau Claire as had been mentioned in the least for a year. At this point I'm not even sure I want to be a support group leader. I have become increasingly frustrated/irritated with the politics of many in the alpha1 community. I just really feel I might not have the temperment needed for such a position of support group leader.

Friday, June 15, 2007

Holy Moses...Basic Keelboat Is Upon Me!

My instructor assured me he will work with me and I WILL LOVE sailing!! I am also going to see if I can figureout how to download digital pictures from my 'puter! One to prove I actually DO live in the biggest small town in Wisconsin and to steal some verbage from someone at the 16th Alpha1 convention...I clean up WELL!!

Well, I am at least starting to get this picture download stuff. There are some other pictures included. The first two pics I think you can figureout! The the third picture in the first row of pictures is (from left myself, I think Jan, Johanna(my sister) and Karis (Crain???) a CSL Behring sales rep(OK). The two group pictures are who's who pictures. The first one in the second row is the Alpha-Pack. The second picture in the second row is a combination of one of the leading doctors in Alpha1 research(I want to say doctor "Sandy" or Dr. Holloway), Jennifer Bauernfeind board members of Alpha kids and Judy Golding(one of something like 8 null/null's in the US as well as a member of the Alpha-Pack BOD) and a CSL Behring Alpha1 support rep Jack Pierce(IL).

Update: Scenic Shore 150

I am still taking pledges online via I have also been busy beating the bushes the old fashioned way. I am truly astounded at the generosity of the people I live around! I liove in the poorest county in the state of Wisconsin and not one person I approached has turned me down. That either means they have known someone affected by Luekemia/Lymphoma or they really like me....either way it is heartening!! I am certainly not done yet...I've only asked half the people I planned on so far.

I do however wish I was more attentive to my spelling as I have noticed many typos that there was no excuse for. I. E. where instead of wear .


The 16th Annual Alpha1 Conference

They said it was the second largest attended Conference. I was thrilled to meet Mary Pierce. For those of you that are not affected by Alpha1....Mary Pierce is one of those more widely recognized folks in the Alpha1 community. Last I knew she heads the Team Alpha1 program and is a alphanet coordinator. Team Alpha1 is a program put together to encourage alpha's to participate in athletic events to raise awareness and/or pledge money for the alpha1 foundation. She mentioned something about me becoming a mentor but, to tell you the truth I'm intimidated by it. I just kinda do my thing and try to encourage/educate others with/about alpha1. She gave me an a team alpha1 t-shirt that has info on the back which I can where in my walks. She wasn't sure if she a had a bike jersey that was in my size but, we were both hoping she did so, I could wear it instead of my Rosie The Riveter jersey!

I attended the Lung Healthy Home breakout session. I look at my home so totally different than I did before I went. I can honestly say none of my family(or me) is really enthuisiastic about the farmhouse I rent...the 40 acres I wanted to put off buying till I had over 50% of what I needed to buy it and build a house on is no longer an acceptable benchmark. I am so intent on living in a handicap friendly lung healthy home I'm willing to stick my neck out and try to buy that chunk of land next summer. I've eyed that quietly on the market 40 acre parcel for 3 years now. If it still there next August 1 and I can buy it...I WILL HAVE a healthy handicap friendly home!!!

Somehow I also have to get money together to go back to college to get my bachelors degree. I need to get off the floor of the window & door factory I work at!! Better yet, I need to get out of there to a better paying job in a lung healthier enviorment!!

I talked to Judy Golding about my shakyness(is that a word???) and she told me to lock my hands together across my chest and pull them away from each other as hard as I could till my fingers hurt and afterwards my hands shouldn't shake for at least 30 seconds to a minute...long enough to calmly insert a needle in a vein!

I also had to sister Johanna spent a good 5-10 mintues argueing w/ Karis(a pharmaceutical rep who sat with us the night of the awards dinner) over the fact that she WAS NOT Stubborn...she was DETERMINED! Ha! WE are ALL both at any given time!

I was encouraged today when I received my infusion. My nurse(thank you God for not making me play musical nurses!!!) commented that my hands weren't shaking like they did last week and that maybe by the time she & her husband take their vacation by theirselves/for theirselves I will be independent. WooHoo!!

Friday, June 8, 2007

I definitely need to get out more!!

I managed to forget what room I was in. I thought what do I need an ID for? I shocked one of the clerks at the front desk when I told her I don't normally stay at a place this fancy and I hadn't flown in 7 years. I was fortunate the lady that checked me in recognized me and gave me a new key card. I felt like a complete idiot!!

I went to a hospitality room and walked in and saw only wine bottles and suits....I decided I didn't really fit in(I was told I didn't have to dress up till Saturday night). I walked in the Hilton gift shop here, saw all the Washington DC stuff and it finally hit me I am in a very historical part of my country. Had I realized that I think I wouldn't have balked so about using another vacation day.

I looked into room rentals at the Red Roof Inn for Strictly Sail in Chicago and realized I won't need to save as much money as I thought I would. I want to do things way different this year. I want to park/stay at a place down near Navy Pier and take a taxi back & forth. NO, Cumberland parking ramp, Schiller Park Motel 6 or CTA. I gotta protect my lungs. I'm really looking forward to Strictly Sail. It's only 8 months away! I plan to take a vacation day on my B-day so, I can hopefully get before rush hour in the afternoon so, I don't get clobbered(although, I still suspect I will get clobbered anyhow)! Since I won't have to save so much for SS I plan to take a day off and go down to Chicago this summer for a 3 day weekend. I want to do that loop architectual history tour, Shedd's Aquarium and the Art Institute. Plus, whatever else I can sqeeze in!! Either end of July or beginning or end of August.

I also got my Rosie The Riveter sleeveless bike jersey ordered! Having a bikers short sleeve jersey tan is worse than a farmers tan!

What's with the bike, Katie?

That's what the owner of the sawmill I used to work at asked me up at the bank. I told him it was for my lungs and to loss weight. It's not working very well though. He said "It will eventually if you stick with it!" It's a lot more though. It's a become a great stress reliever. It's an opportunity to meet different people and educate them about alpha1. I have been feeling bad because I just haven't been able to get bike time. I did get some bike time in earlier this week. There's something about feeling the wind in your hair!

I haven't been posting for a while because the two culprits we alphas all resent: fear and anxiety mounting in me. I just just couldn't get into a possitive groove. It crested and subsided a couple of days ago. I finally realized: It didn't matter if the rest of my garden didn't get done this week...I've gotten it in later than next week and it did just fine. I can always make oak leaf wine next year and I got one of my clients lawns mowed. I've been fighting the rain but, we have really needed it! Now, I feel like I'm back on track. The augmentation therapy is helping me feel more energetic and my memory is improving, too.

Lucky 7 ...Have Fun! Have Fun!

Is it lucky? It's been 7 years since I flew. I haven't even flown on one of my BIL's planes. It was kinda cool. I used to go visit my Mom at her winter home in Sun City during February years ago. Now,

I'm heading to Alexandria, VA to attend the National Alpha1 convention! Compliments of CSL Behring. I called my sister Mary last night about my flight numbers. She kept telling me to HAVE FUN!! My nurse Sue said the same thing yesterday morning. HAVE FUN!! I keep thinking "Gosh, I hope I learn something new OR maybe I can meet a new alpha with a new story to tell about them and alpha1".

I feel sooo blessed to have Sue for a nurse!! Her boss isn't real thrilled that she is still seeing me instead of me playing musical nurses. I asked her if she got paid for doing some of the things she does for me and she said no. I then asked her what made her do what she did. She said "I'm good at finding veins and I find my work rewarding." I thought what great thing to be able to say when your our age! We aren't sure if I can do the inserting the needle to start my infusion because my hands shake so much. I am going to put off taking my combivent next Thursday and see if that helps.

Saturday, June 2, 2007

School Days,etc.

As some of you know I had returned to college last fall for the first time in 14 years with intentions of being on the eight year plan. I then withdrew for the spring semester I signed up for because there was the threat of involuntary layoff, I was pretty wore down physically and getting sick. I had also decided that I should go back to college when I get put on disability. It would give me something to focus on besides my imminent death.

We are working 40 hr work weeks sporadically and the thought occured to me "What Color Is Your Parachute....if they lay you off?". I have since decided if I can somehow come up with the money to take 3 credits a semester I should try to do that since I know there are several medical/pharmaceutical companies that like to hire Alpha's.

I told my Chicago clients this might be my last year mowing their lawns but, on the other hand I also told them every year I swear is the last and I'm still doing them 3 years later! Nine credits a year isn't a lot but, over time it may prove very beneficial to me. I also know there are a number of essay based scholarships out there for people my age listed on Fastweb and I think I should attempt to complete them. Nothing ventured...Nothing gained!!