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.
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