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, November 1, 2017

Poker hands & Crossroads (part 1)

I had not realised just how long it had been since I had last poste so it looks like I have a lot of ground to cover. I will start with Horribly Hilly, National conference and heat exaustion. The Horribly Hilly Hundreds truely lived up to it's name. I wish I could have spoken to more participants but, they moved me from serving beverages to serving food. There were a few seasoned metric century participants that said they would never do it again. One of them had already completed 4 metric century before HHH. I was struggling with heat exhaustion even though all I was doing was dishing out beans. Later in the summer I broke down and cut my long hair due to struggling with heat exhaustion at work.

I had looked forward to attending the first alpha1 national conference in 10 years all spring however when I got there what I experienced and what I anticipated were quite different. I went to Loews for Saturday morning and sat down to breakfast. I didn't realise till I sat down at the table that Lorena from Indianapolis was there. What shocked me was she was on oxygen and only said good morning. More so that she was struggling with supplemental oxygen. During all the many alpha1 events I had attended in the past she had always been talkative and quite jovial. I then went into the exhibit hall and noticed that more people had passed away that I knew than I realised. I sat down at lunch with over a half dozen alphas.

I will set the view and share the story: Len Geiger (our celebrity bilateral lung transplanty and well known alpha1 speaker) was standing at 6 o'clock a the ajoining table to the left. At the next table Ric & Angela Logsden were at 11 and 12 o'clock (Ric an Alphanet coordinator). Dave Courtney (an alpha support group leader and bilateral lung transplant recipient) is sitting at 9 o'clock. Mike Hixom (alphanet coordinaor) is sitting at 4 o'clock and a couple from Shire are at 1 and 2 o'clock (she is an alpha and her husband is the rep sitting next to her. So we all are pretty well versed. I begin the conversation "You reach your saturation point." Which you can take several ways. I said "I have spent the last 10myears worrying that I had insurance to cover a lung transplant. I had looked forward to attending this all spring. When I got here I realised there were more who had died than I realised. Then it dawned on me that several of them had never even reached getting listed and were on supplemental oxygen. I also saw several who I knew and hadn't expected them to be on oxygen. I have reached the point I am ready to settle for shitty and shitty plus health insurance! I have come to the conclusion if the opportunity presents itself that if I have 8 years without having to have supplemental oxygen left and can go to work for myself and do I what I love I will take the opportunity to do so! Because we all know that when you get on supplemental oxygen you cannot enjoy thing the way you would without it." And none disagreed with it. I sat down with Dave Courtney Sunday morning for breakfast. We had a frank discussion about how the loses of people effect us. He did express concern I was anti transplant  (which I am not anti). He said he was anti transplant till his son changed his mind. I also talked about the fact I spent most of the conference feeling 70% depressed because of the deaths and those on oxygen. Crushed might be a better term. He said his wife doesn't come to many of these because she knows to many of those who have passed and it's very hard on her. He also invited me out to Texas to Javlina hunt (have-a-lena). I'm pretty excited about that for two reasons. I've really wanted to and it's ussually pretty costly. Ric Logsden invited me to Kentucky to hunt as well! I had really wanted to eualigize Cindy Wilson and my sister Johanna at the informal memorial service. I was shocked to see that is was 6 times the seating and 12 times the attendance of the last one I attended. I was one of the last to speak. I would love to tell you I held my self together but, I can only say I started weak with Cindy's and ended strong with Johanna's. I also want to make mention I sat and eat dinner with a couple of alphas from Johannas beloved alphapack support group Saturday night. They ended the memorial service with thr writing called the dash linda-ellis.com/the-dash-the-dash-poem-by-linda-ellis.html.

Ok now we get to the post title!

Through out our lives we encounter many poker hands and and occassional crossroad. We all want to say we handle them well but, there are always one or two we wish we would have handled different or better. The last sixteen months hasbeen quite life changing for me and I believe enough time has lapsed I think I can be honest about some of the things Bill said and texted that will lead to some understanding about why I say some of the things I am about to express. This is not an easy post but, I don't do pretentious well. In fact I believed this would be my last post as well. I am in the midst of creating a different life for myself. It may or may not be my last post? When I saw Bill's nephews obit in out hometown paper although it saddened me such a young man had passed away and I couldn't begin to imagine his Mother grief over the loss of a child....I was relieved to find a way to communicate with Bill. I called his childhood church and asked to speak to him. The secretary of the church was very excited that someone was calling for him. the call got disconnected but, I called back. At first he was deathly silent and all of a sudden he says "Is this your number? Can I call you sometime?!" I said "Sure. You bet!". Then he suddenly says "You know I'm retired! I retired lasy year at 55! I retired early!" I had not spoken to Bill in 15 years. The last time I spoke to him his wife had woken him up to talk to me and he bit my head off for waking him up. I would have called him back but, I wasn't sure when to do so and I didn't want my head bit off again. I had called his Dads to get his phone number and his da thought nothing of me asking for it or giving it to me. He mentioned Bill's oldest daughter was coming up from Indiana to take him out fishing. For the record I have known Bill since I was 10 year old and I'm almost 52. He worked off n on for my Dad for a littl over 10 yrs. About two weeks after the funeral I was at work and had gotten a text from him. It said "This is Bill Delaney. Let's talk. I texted back and get this text saying: This would not be a good time I have company right now. We eventually swap a few more text and it's nearing Fathers day and he is OFF THE CHARTERS verbally when it comes to fathers day being off limits. There is no doubt in my mind Bill was heavilly traumatized by Chad's tragic death. 

I am getting tired. I had the flu 2nd week of Sept and I'm on meds because I never got over the congestion aspect completly and need my sleep so this is getting turned into 2 parts. G'nite!!

Friday, June 9, 2017

Triumph, Chaos & Conference

I have an update on triumph...she is doing awesome!! She and the great dane have an understanding...if he doesn't mess with her she doesn't take a swipe at him with her loan clawed front paw. She has run of the house. She is let outside 10 minutes before bed and let back inside. She has taken up stalking chickens till they turn the tables on her and begin chasing her.

Things have been pretty chaotic at work and will continue to do so. I have been looking around for a different employer. I suspect in the next few months I will be going to work for a truss company.

I didn't get after reserving a room at Loews so I will be staying at a motel 3/4 a mile down the road instead. There is a lot more to tell but, I am struggling for a way to express it tactfully. I called about being fitted for golf clubs and we decided for now I would just pick up an inexpensive set to begin with. I was gonna relearn the game of golf last year. Horribly Hilly Hundreds next year will likely be my last hurrah for big & ugly bike challenges. After that more recreational bike/hike events

Sunday, May 21, 2017

Spring Mash Up

I've been spending most weekends at the cabin. I always said "I loved the process of making maple syrup". I hadn't made it in 29 years. It had always been a blanket statement. I discovered it is the process of setup and cook down I love. There is something magical to me about seeing this clear water turn into this sugary brown liquid! And the smell of the steam coming off the cooker!! You literally can smell it changing. The last time I made syrup was my first year in college. My Father had called me in probably October. He asked offered to buy me a plane ticket to spend Christmas with them and I said "Actually Dad...what I would rather do is take a raincheck and come home for Maple season." He thought about it awhile and then agreed to it. So I got to run the sapline with the old man the last year he made syrup (although I did not know it at the time). I just want to make syrup and spend time in the blue hills at the cabin. I wish Dad was here! I finally like the taste of maple syrup. I always preferred Mrs. Butterworths. Drove him crazy!! I had to walk a mile down to the cabin and back uphill. I must say that I gave serious consideration to not participating in the Horribly Hilly next year. Not because of my lungs but, because every fiber of my being ached!! I have enjoyed the cabin the most I have in 30 yrs! I have owned it 25 but, the 5 yrs leading up to it I was working to fund my college so there was never time to spend up at the cabin. Easter morning was the most amazing morning. I just wanted to sit on the back porch with bacon, eggs, wheat toast and drink 3 cups of coffee. It was just positively glorious. Hadn't experienced that since I was a teenager I bet. Now struggling between buying a range finder or buying binoculars! Looking forward to spending weekends there and learning to make fishing rods this summer on the back porch. Sure will be rough listening to the crickets, frogs, creek and whatever other wild sounds I hear.

Thursday, April 13, 2017

Mirror Mirror On The Wall

Really have no specific reason I haven't posted in a long time. I've struggled w/ my sinuses since September. my dog was having eating issues and I have been doing a lot of reflecting an soul searching. Life's full of choices and many of the choices Bill made were not choices I would have made. I will never forget when he said "I don't understand you. Why don't you keep your job in the factory?". He was proud of retiring early. He did so by working 12 hr days mostly 7 days a week for 20 to 25 years. He didn't take vacations. I thought a lot about how I've lived the last 25 years. Until my Dad was diagnosed with cancer I made it to 2 or 3 concerts a year. In the last 25 years I've made it to 8. I've taken 2 vacations. I thought about how much hunting used to mean to he, Dad & I. I also finally realize what my classmates meant when they would tell me "I could walk out and be hit by a car today!"...it just meant we're not promised tomorrow. I've spent more time at the cabin in the last month than I have since Johanna quit coming up here due to health matters. I went to Pheasant fest. I talked to doctor Hogarth about big game hunting and altitude and I made maple syrup for the first time in 29 years. Bill desires were real but, his expectations were not. I am charting a new course and decided I don't want to miss a thing. I am signed up to volunteer for the Horribly Hilly Hundreds metric century so I secure my ability to compete in it next year. It is one of the Midwests most prestigious bike trek and much more difficult than the Dairyland Dare but in a cooler month. I think next year I will hire a personal trainer to try to take my athleticism to a higher level. Don't know if I can do it but, I don't know that I can't either. I know that if I don't try I will never know. Always set the bar a little higher than you think you can go or you will never know what your true capacities are.

Wednesday, January 11, 2017

Slowing Up

I am still having breathing issues. The food poisoning has passed for the most part but, it was humbling! I wouldn't wish that on my worst enemy. I can't remember the last time I said that! As a result of the strain it put on me and how difficult it was to just get up to let the dog out...I am going to give up my long time merchandising job. There is no end in sight to the 50 - 50+ hr work week. If I give up the pt job I can get more rest and when I do have an entire weekend off I can take off. I also am always wanting to spend more time with my dog. Still considering Bike The Drive.

Thursday, January 5, 2017

First ever smart ph post

Have not found internet jet pack yet but, did wrap my dogs leash handle around my wrist so Holly couldn't get into too much trouble. She actually chewed on what she was given to chew on! To her credit over the last 18 months she has chewed a computer cord, CPAP cord, nebulizer cord, pair of shoes, two pair of cheater glasses, two personal cell phones and 1 work cell phone.

And I came down with food poisoning this week. I've had it happen to friends but never to me. It's not a pleasant condition and the recovery is a little different. I took two vacation days because of it. I can't afford to miss any more work in reach my goals. I went to Urgent Care on Tuesday night and I did finally have a prescription to worked on my upper respiratory issue. I got put on Avelox.

Monday, January 2, 2017

Year End Wrap

The last month and a half was BRUTAL!! I had some 20 appts in 30 days due to truck lost, car replacement, loan officer appts surrounding both, dr appts and furnace issues. I totaled my truck a wk before gun deer season. My furnace had quit working and after $1600 in parts later was running proper the day before Christmas. I was invited and attended the County Sheriff and his wife's Misfit Christmas party. I spent most of my 4 days off from the factory sleeping. My internet jetpack has come up missing so that is why I haven't posted. Usually my dog hurls up foreign objects 3 days later so I'm not convinced she consumed it. I have found neither parts of it but, have not ruled out her dropping it somewhere. I am on my 3rd round of meds. One day I feel kinda good and other days I feel run over by a Mack truck. There has been some interest in me running for town chair and recently county supervisor. In speaking with the person the current position coming up I think I might run for county supervisor. I was surprised  that no one wanted on the tourism board. I think I can provide a more meaningful impact for my community via the supervisor position.

I am thinking about upgrading to the new technologically advanced Kurt Kinetic trainer and possibly taking up mixed martial arts next yr. It all depends on overall health in the coming months.Don't expect me to post much until I get a landline into the former milkhouse ths summer.