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

Sunday, October 19, 2014

Making The Most Of Life....Words Are Powerful!

Been a tough week for me. Lost a good friend I had known only 2 years. In ten years I have experienced the loss of three very special people in my life. Each loss changed me. My good friend who started out as merely my NRA Counselor I learned lost his battle against cancer 9/11/14. It's a date I won't soon forget along with 4/12/12. I don't remeber my alpha1 friends death date but, I will always remember my sister Johanna thoughtfully calling to let me know that Cindy had passed away. I remember weeping. When my sister died I weeped off n on for three days straight. Now my friend Les Miller always told me after he was diagnosed with bladder cancer  "Either Alexis or I will answer this phone." . I had called a couple times and got no response. I got a text saying "I'll call you later" and I thought Geez that's funny Les never texts?. I texted back I had run out of wheaties. Call Sunday night. No call. I call twice Monday at lunch break. The second time Alexis anwsers. I ask her how her Dad is doing and she says. "I'm sorry my Dad passed away 9/11. There's only so much time in the day". I had told Les I would call him back in about 5 weeks since he was starting another round of chemo.The last time I spoke with him,,,the next to last thing he told me in a sweet way "Katie, be kind to your body." I realised he was sick and that makes you put different values on things you used to put lesser value on. By the end of my conversation with his daughter she was thanking me for calling and said "I'm sooo glad you called back". It's interesting after some one you care about passes you become more awre of the positive qualities they exhibited and how sick people can be giving hints to what lays in their future. Les had always been upbeat. Gave the impession he could beat it but, he must have known I was too busy to fact check. He had recently sold his beloved 40 cal Springfield Armory handgun he wore EVERYWHERE! He no longer expressed a desire to order guns for others (he was an FFL holder & gunsmith). Despite the short two years I knew him I learned a lot and I know I only scratched the surface! He took a wealth of knowledge with him. Those type of people are few and far between as I told his daughter. He like my Dad were very dynamic individuals in their respective fields. Les was a gunsmith, motor head and outdoorsmen. He treasured his family more than amything. The long and short of it...I spoke to him a week or less before he died. He actually didn't die from bladder cancer. He died from brain cancer. According to Alexis "Dad & I thought we had 2 years. He was fine on Monday. Crashed on Tueday (I'm assuming medically because that's what my Dad did). Did a scan of his brain, It was full of grade 4 cancer. I pulled the tubes on Wednesday and we lost him in less than 24 hours." I told her "I know all about that! Grade 4 Glioblastoma. That's what my Dad had and lasted 10 days after he medically crashed."

I have been so hell bent on getting debt free and coming up with $1,500,000. I started to rethink my game plan. I am still rethinking my game plan in so many ways. Starting to consider slowing down the debt elimination plan and asking myself is this the absolute best plan? Can you slow down for a while and have a little fun before you're handcuffed to a oxygen tank/concentrator? Could you slow down to self-employment, Play a little more and try to come up with other ideas just as good or better to attain the same goal but less stressfully. This is still a work in progress. I stood in the book section of Wal-Mart (of all places) and pondered the power of words as I relived hearing my friend Les's words "Katie, be kind to your body.". I thought about the fact my vocabulary has diminished since I moved up here. I thought about how my short term memory might not work anymore like othe alphas have warned me will occur when my lung function becomes diminished enough. I thought about how I used to be a pretty good ficitonal writer when I was 18 or 19. Could I find some joy in writing while not having the freedoms we all take for granted until we recognoze some of them are gone due to what ever illness(s) we are coping with? Could I rebuild my vocabulary enough I could remember how to use those "big long words" in the correct contexted my buddies in collge begged me not to use because they didn't know what they mean. Words are powerful in so many ways. They can make you rethink your choices or they can help takes someone to a imaginary place or time.

A bit of deja vu going on. My current specialty drug provider provides me financial assistance w/ my max out of pocket. My alpha1 advocate accued me of being unfair when I told her I felt like I didn't have an advocate when $70,000 in meds had been delivered and only a little over $2000 was recognized by my insurance provider. She expected me to track down most of the info to determined why some other med bills would be arriving in my mailbox. As I soon doscovered it was her co-workers who failed although there could be extenuating circumstances. I did threaten to quit infusing. I told her I can't keep working 55 - 65 hr work weeks to keep my head above water financially. At first she didn't understand all I have been through in the last 11 yrs. I then explained 2 seperate incidents and when I got done she went "WOW!" We shall see what happens. I spoke to a different team member and she was quite apologetic. I told her "Although we probably can't alter what has already played out...we can learn from it and take measures to insure it doesn't happen again.

Sunday, September 28, 2014

Staying Nimble and Hopping Off Hay Wagons!

Last fall was such a wonderful comeback story! It has enabled me to do lots of things. One I wasn't dependent on a nebulizer or rescue inhaler. Though few know I had gone out to check my propane levels just before a big snow storm (I think in February). Enroute I took a fall. I didn't expect to go into full blown panic. The harder I struggled to right myself the closer to the melting snow I became. I realised I had to pull myslef together and get a little wet. Perhaps a little cold. It rattled my cage pretty good! I haven't fallen since.

I just wasn't getting the hours at work so I applied for a part time merchandiser position. I have a immediate goal of becoming debt free except for my farm in 1 year. A midsized goal of being mortgage free in 6 years and a long range goal. A long term goal of having $1,500,000 in cash in 10 years. Most of it through mixed real estate interests and the farm. Next year is my return to pastured hogs and returning to being a dog owner. A new foray in a few years into raising and breeding Llewellin Setters from the Dashiing Bondhu line. That should cover the cost of a bi-lateral transplant because I'm not going to struggle along on social security disability!!!! I had a supposedly devote christian literally go into a fullblown belly laugh when I told her. I explained to her I believed I lived in the worlds greatest country in the world. Although we have problems...people start with nothing and become millionaires every day. If I don't try we know I can't but, if I do try there is a very good chance I can achieve it!! (I am a big Dave Ramsey fan so now you know I can live like no one else so that I can live like no one else later. I pretty much don't go much of anywhere except to U of Chicago once a year and now I figured out a way to avoid the expense of not staying overnight.) I retold this story to another Christian and I said "If God be for me who dare be against me?". He said "That's a great response!! You're absolutely right Katie!" I do have a couple indulgences... an ocassional Leinenkugel or Guiness Extra Stout and I eat at a local Mom & Pop cafe.

I've have had to crawl over other merchandise pallets to get to my back stock and hop off of pallets. I've learned to hop off them carefully. As I hoped off one yesterday I thought to myself...Remember when you used to hop off of hay wagons without giving it a second thought. I am so glad after 7 years of people telling me I shouldn't or couldn't do something I didn't listen. I listened to my body! Your body will not let you do something it can't handle. I never rushed into any activity but, I do proceed cautiously!!!

Saturday, March 15, 2014

Picking Up The Pace!

Still doing very well since October. Ordered Power90 (little sister to P90X). I did not know whether or not I could do it till I viewed it. Goal is to lose 25 pounds. Purpose is to improve FEV1. They said for the program to really work you have to change your eating habits. It is still a work in progress! In the process have got my sugar levels stabilized which had been trying to do since 2008 with no success. So glad I managed that.

Warm weather has finally found us in the dairy state! Woo Hoo!!!! Now I will be able to get at projects outside! Proud to say I shoveled my driveway all winter long. Wasn't a planned thing. Started from neccessity and end out of a desire to challenge myself.

I looked into the self employed insurance coverage and had 3 choices according to one of my industry advocates. All of them were quite sub par. I did hear you can go outside of the exchanges to look and eventually I'll look into that. At this point I am preparing for worst case scenario. So at this point I'm trying to dig deep, focus on how to make more money outside of the factory to build wealth to be self employed and pay for the anticipated needed lung transplant in 10 + years.

Friday, January 10, 2014

Every Day Is A Blessing

As I mentioned in a previous post the filter on the camera lense of my life has been changed. I wake up every morning with the feeling that is a huge gift! It might not be perfect but, it's far better than most given my lung condition.I wake up every morning want to smell, taste and experience as much as I can. I appreciate nature the most I have since I was a child! I can best describe the feeling as the first time a child notice a butterfly and see's it fly away.

My barn roof fell down a week ago and the cold weather has been causing havoc with my LP gas regulator causing my furnace to go out during this record cold snap.Not much barn has been dismantled (well, actually none has been dismantled). In the process of telling somebody about my barn I also remarked that I wish I knew someplace that made arched rafters. I'd really like to rebuild the barn only better. Somebody piped up "I know where you can get them but, the company won't let anybody see the jig or how they are made!". That got me excited!! I plan to reuse the floor boards for the new old barn and the rest try to repurpose it for converting my greenhouse into a woodworking shop, making furniture and reuse as much of the base support timbers for when I rebuild the barn (hopefully 3 - 5 years). I have given myself 2 months to completely dismantle the barn. At first I thought the dismantling the barn would kill my doing maple syrup. Then I realized if I gave myself deadlines which could be altered I likely could still make maple syrup! In the process of shoveling I FINALLY realized why my Grandfather wore those nearly knee high hunting boots in winter!! I kept getting snow in my La Crosse Ice Kings while shoveling. I started looking around online and that is exactly why Leon Leonard (LL Bean) created the near knee high boots....he got snow in his boots while out hunting and came home with cold & wet feet.

I'm trying to lose 30 pounds but, it's not coming off very fast. Why is the weigh loss so important? I have a good bit of weight around the stomach area. That puts pressure on the diaphragm which in turn puts pressure on the lungs and reducing what the lungs are able to do.

Saturday, January 4, 2014

Walking The Tight Rope

In September I received a very chilling prognosis. I've never really felt great for a couple years but, I could never understand why. I saw my lung doctor on September 27th, 2013. He told me I had 1-3 yrs to live with no chance of transplant and where did I want my oxygen and concentrator prescription sent.When I stopped at the local Apria when I got home I asked the gentlemen who help me load my supplemental oxygen concentrator " Has anybody prescribed these returned these shortly after being prescribed them?" He responded" No. But, that doesn't mean you can't." Within two days of returning home I was having such a time breathing I went to one emergency room until I realized they had no clue what they were doing and there was a good chance I could die. I went home, fed my animals and headed to the next ER. There I was admitted and although it took over 30 hrs to get my airways open enough so I could lay down to rest they got Dr Hogarth involved. He asked for respiratory therapist to be brought in and I feel the best I have in 2-4 years! I spent three days in the hospital. My Oxygen level is up, heart rate down and the filter on the lense cap of my future has been altered. I was off work for three weeks and for the first time I wasn't sure I'd be able to return to work. And I'm the type of person who has never dreamed of retirement. When I returned to U of Chicago to visit Dr Hogarth I was released to return to work. Although he would have liked me to keep the supplemental oxygen & concentrator if it was paid for he was ok with me returning it. When I stopped by Apria the same gentlemen met me to help. I said "I'm here to return the concentrator & oxygen tanks." He simply said "Good.". I've been out shoveling my driveway and I have better cutting numbers at work! In spite of the financial setback I'm doing pretty good. It looks like I will be able to make first half of taxes and I haven't had to open up a charge account at the feedmill yet for propane. It's as high as I used to pay for fuel oil to heat the farmhouse I used to rent. Life is good!!!!!