Thursday, April 29, 2010

Life Lessons I've Learned (so far) From Growing Older with CF

For a while I’ve been going through a period I’ve never really gone through before, I was really getting down about living with cystic fibrosis and the way my life was different from everyone else’s… or so it seemed.

I’ve been way too focused on all the things I *could* be doing, I’m not able to do, and how I kept thinking: I’m much more dependent now than independent, and I don’t know when that happened. Due to a recent Sunday School lesson at church a few weeks ago, I now have the feeling that I am out of balance, and I’ve never felt this way before.

So I’ve made the conscious decision to get that positive attitude back about my life, and I began thinking about the life lessons I’m learning during this process.

1. Don’t try to do everything everyone else does.

Whenever I am sick- on antibiotics or in the hospital, I have many people around me to help with anything I need, from a book that I left upstairs to retrieving the mail from the box down the street or simply fixing a meal. Because I’m a stubborn strong-willed spirit, after a few days of this I decide to try to do for myself as much as I can. And I quickly run into issues – Yes, I could do all of these things with a lot of extra effort, but would it be worth it if I relapsed or got run down again because of it? Nope, definitely not.

The takeaway here is in thinking of all of the obligations and responsibilities we try to manage on a regular basis, and deciding how much is too much. When we try to do too much on our own, it’s easy to relapse. And this could be avoided, we have choices, and we need to best figure out what our ‘management capacity’ is.

2. Balance is everything.

I run out of oxygen quickly, so I’ve become a much better planner and organizer. I’ve learned to organize my tasks and maximize the most with the shortest routes to keep myself balanced (ex. listing everything I need to have with me before I head down the stairs in the mornings so that I don’t have to turn around and go all the way back up a few minutes later- gathering all things on the list and then heading down). But this only works if I actually remember everything and it makes it on the list. And if I do happen to forget something, I have the challenge of overcoming my own pride and humbly asking my wonderfully devoted husband to do me a favor and go back upstairs for whatever it is I forgot to grab…

Lesson Learned: It’s very important to balance the physical, mental, and spiritual sides of ourselves. Which leads us to balance our financial needs with those of our heart, to balance the practical with our big dreams, to balance work and play and family Without proper balance, we are in danger of running out of oxygen, and learning to moderate and find a good middle ground with our lifestyle has a huge positive effect on our lives.

3. Asking for help is healthy.

According to my astrological sign-Libra-something I’ve never put much stock into, I’m like the scales of old trying to "balance”. I respond to situations with grace as I attempt to put others at ease. The greatest balancing act is between self and others, and it is here that many Libras focus their energy. Here, in the realm of interpersonal relationships, I should be a champion; because Libra’s know how to be the charming host or hostess and Libra’s can sense what others want before they ask for it. A Libra also tends to make the needs of others a higher priority than their own. All this and yet…I still have a hard time asking for help, even without being in a sick phase. Now that I can’t do as much as I would like all the time, I have to ask for help (or get scolded when I don’t ask, but instead try to do it myself), and I’m realizing how crucial it is that I speak my needs and ask for some help with whatever I can’t do at the time. According to Zodiac Central online: A Libra’s Greatest Strength: Grace and charm when helping others, A Libra’s Possible Weakness: Forgetting to take care of your own needs. Who knew that the stars and their alignment in the universe could have so much to say about my little corner of the world!

I think I have come to the conclusion that even the healthiest and most oxygen infused aren’t expected to do everything in life by themselves. The wonderful thing about community is the reliance that comes as a natural result and the bond of helping those we care about, with no expectation of a reward. Asking for help is not a weakness, it is the understanding of our own limits and accepting the bond we share with those around us willing to help.

4. Sometimes you just need to stop.

Because when I am sick, on antibiotics or in the hospital from time to time… I’m propped up in bed most of the day exhausted before I even start, I have to take extra effort to get out and get around just to get my blood pumping and to feel the sun and wind on my face. So, I usually take a walk enlisting anyone who is visiting to come with me, and we head out of the room down the hall or outside around the block. I do fairly well until about three quarters of the way, at which point I begin breathing hard, I have to lean on something, count myself down from going into what could be mistaken for an asthmatic attack, and then I find myself wondering just what the crap am I trying to prove here? So I just stop, right there in the middle of the hall or on the side of the road, and let my heart slow down and get my breath back, and apologize to the family or friend that I had to hold them up. Their response is usually that I should do what I need to do, and not to worry about them.

The lesson here is that when we are not able to keep up, or we need to recharge, or we think we need to change direction in our lives, then we really just need to stop what we’re doing. The world will still keep spinning, the sun will rise and set all by itself, and our loved ones will support us without a second thought while we catch our breath. As a wiser person than me once said, “You can resign as the general manager of the universe.”

5. A molehill can really be a mountain.

Imagine taking a trip to the grocery store. You arrive to the parking lot and begin getting nervous as you drive around endlessly because you do not see any free spaces near the door of the store. You get anxious trying to figure out how many steps it is going to take you to get from your parking spot in the middle of the lot to the store and if there is anywhere along the way to stop and rest, lean or cough without being noticed or questioned. When I plan a trip to any store it has to be worth my while, worth my energy and most times out of dire necessity, that is unless there is someone with me to either drop me at the door or run in for me. I resolved myself a few years back to applying for a handicap parking placard. This would put me close to the door of any store for sure, and I could remove that little blue and white placard when not in use to save what little bit of pride I felt I was losing (thus not getting a permanent handicap license plate for my vehicle). For anyone else, that little trip to the store would not cause any sort of issue, but for me, it is a major obstacle.

While we’re often cautioned to not make a mountain out of a molehill, sometimes the tiniest things really can throw us off. We would be well advised to look twice before committing to anything that might have the potential to upset our balance, based on our personal situation. We really aren’t all the same – we’ve all got different strong points and weaknesses that it pays to acknowledge and adjust for in the way we approach life.

Saturday, April 17, 2010

Great Strides Walk in Williamsburg! April 17, 2010

So today was the Great Strides Walk in Williamsburg! Walking to help cure cystic fibrosis is what it is all about! I had been looking so forward to this event this year as I was on the planning committee for the walk and it was only our second year of having a Great Strides walk in Williamsburg. I have lived here my whole life and to see these things taking off in my community finally makes my heart leap!
I had a wonderful team! I had about 42 people registered to come out and walk with me. I cannot tell you how amazing this was to me, just to know that I am so loved and have so much support in my life!
Here are some photo's from the event. Enjoy!

Me and my nephew Caden
Sporting the balloon hat!
Cousin Stormy and her hubby Rob
Family: Aunt Faye, Aunt Patricia & Aunt Linda
Good Friends: Amy and Mary Beth
Author Wesley Smith- I bought a signed copy of his book: Run
Awesome DJ: Eric Cunningham
Aunt Jewell and Aunt Patricia
Carl & Pearl Douglas, hubby Zach on the right
Begining announcements: LaDonna Austin, CFFoundation
Great Strides Banner
Sister in law Gabby and Bro in law's GF Kate
Kate & Gabby again!
Awesome balloon guy: Dave Bolt

My team "One Life, Many Breaths" raised about $2,300 this year! I am so proud of everyone!

Thursday, April 1, 2010

New Health Coverage Regulations Beneficial to People with CF to Take Effect In September 2010

April 1, 2010

New health care regulations, including some that are considered beneficial to people with cystic fibrosis, are scheduled to begin in September, 2010. These include:

Pre-existing conditions: People with pre-existing conditions will find it easier to get health care coverage and have more protection against losing coverage. Insurance plans will be prohibited from excluding children from health coverage due to pre-existing conditions starting in September. This protection will also cover adults beginning in 2014.

Annual and lifetime spending caps: Insurers may no longer establish annual and lifetime coverage limits on their health care plans. Some group and individual plans will see the elimination of limits on annual and yearly caps starting this year, while others will this benefit starting later.

Coverage for dependents: Children will now be able to remain on their parents’ or guardians’ insurance plans up until age 26.

The Cystic Fibrosis Foundation continues to closely follow the changes to health care reform. While the Foundation has not taken a position on any particular health reform bill, we have consistently and aggressively encouraged officials to include specific reforms that are important for the treatment of cystic fibrosis.

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