Why I Fight...Blogger Challenge

Why I Fight for a Cure for Cystic Fibrosis...

When I was born in 1975 the prognosis for Cystic Fibrosis was very bleak.  I was always painfully aware of the current life expectancy and I always had a hard time envisioning life beyond that age. 

Yet, I know that I have shared here before that I feel like one of the "lucky one's".  I have worked hard at staving off CF and for the most part it  has steered clear enough for me to reach milestones that my parents once thought would have been impossible. The current life expectancy is 37.4 years.  I turn 37 next year.  I no longer have trouble imagining a life beyond the life expectancy.  I feel pretty certain that CF won't take me anytime soon. 

So why do I fight for a cure?  I fight for a cure so the next generation of kids with CF can suffer less and live longer.  I fight so new parents of babies with CF don't have to worry about out-living their children.  I fight so this nasty disease can be beaten into submission.  I also fight for all of the amazing men and women I have met with CF who work so very hard every day to stay alive.  I am hopeful that someday in the neat future we will all be able to live without having to work so hard at it...

Please take a look at this video that was put together by my friend, Emily's, family.

Emily's Entourage Video

Then take the challenge below!

Here are your official rules for participation:
1) View Emily's amazing video here, then consider making a donation of your own or "liking" her page on FB (neither is required, but both are encouraged!).

2) Create your own blog post, FB status update, or other form of social networking tool (letter, email, whatever). In the body of the message, place a small paragraph of why YOU fight for a cure for cystic fibrosis and why this cause matters to YOU. This can be your CF story, your wish for the holidays, your version of community -- whatever.

3) Link to Emily's Entourage Website and encourage your own readers to take up the challenge.

4) Comment on Piper's blog here with a link to your blog a message about how you shared this vision for an automatic entry into a drawing for a very special CF/transplant-awareness prize package, including gifts from iheartguts.com, apparel, and other fun goodies!

5) Re-post these rules on your own page.

100 Things

I am thankful beyond measure and I want to shout it out for all the world to hear.  Since I'm positive that there isn't a megaphone big enough to do the job, I figured I would just share with you the top 100 things I'm thankful for this year...in NO particular order.

1) The Golden Girls - I love falling asleep to the sound of Blanche, Rose, Dorothy and Sophia bickering every night. 
2) My adorable Lego-obsessed son, Jacob
3) Chinese dwarf hamsters
3) Pad Thai
4) Hot baths
5) Deep breaths
6) That I have the daughter my mother always told me I would have...the one who would give me a  run for my money ;-)
7) Wet kisses
8) My cozy home
9) Heartland Community Church
10) The friendship that my husband and I have had over the past 20+ years
11) Smooth flights
12) Working from home
13) Dr. Dazzle
14) Comfy boots
15) Friends that have lasted a lifetime (Lisa)
16) Friends that  feel like they have been in my life forever (Elizabeth)
17) Friends that weather the storm (Vicki)
18) New friends
19) Forgiveness
20) Second chances
21) Books, books & more books
22) Cherry Coke Zero
23) Pumpkin Pie
24) Morning snuggles
25) My amazing mom
26) My kind father
27) The beach
28) The Comedy Central late night line-up
29) Cleveland sports teams...God love 'em
30) Sunday football
31) Family game night
32) Movie theater popcorn
33) Modern conveniences
34) My Grandmother...my likeness
35) King size beds
36) Antibiotics with minimal side effects
37) Portable nebulizers
38) Healthy hours...days...weeks...months
39) GG...my honorary niece
40) Ebay
41) Amazon Prime
42) Love
43) Medical researchers
44) My step-parents...for making my parents happy
45) Family movie night
46) Calculators
47) Good health insurance
48) Martinis with friends
49) The SiriusXM Channel "Lithium"...90's alternative music
50) Sunsets
51) Kind deeds
52) Soup made out of love...Cathy
53) A clean house...Lynn
54) Fun nail polish
55) Annoying brothers that grow up to be much less annoying
56) Allergy medications
57) Chocolate
58) Successful whale watching missions
59) Romantic weekends away
60) Family vacations
61) warm socks
62) Happy hugs
63) Facebook friends
64) Lazy Sunday's
65) Crisp fall days
66) Sand between toes
67) Understanding co-workers
68) Blogs
69) The ability to exercise
70) Miracles big and small
71) Almond Joy
72) Bullet-proof vests
73) Microwaves
74) Stickers
75) Hair dye
76) Fleece
77) Chap Stick
78) Birthdays
79) Target
80) Super-brilliant step-daughters
81) Honey Hut ice cream
82) Fireplaces
83) Avocados
84) Asic running shoes
85) Family gatherings
86) Puppies...cue the allergy medicine
87) Skype
88) Fantasy football
89) Good movies
90) Dinner dates with my hubby
91) Opportunities
92) Bike rides
93) Long walks with good friends
94) Sunglasses
95) Prayers
96) Thunderstorms
97) Cousins
98) My reliable car
99) Holidays shared with family
100) Breathtaking moments!

Happy Thanksgiving to you all!

MAC is Whack!

I had a clinic appointment today.  I went in wondering if I was going to be able to maintain my record of having a clean culture for both the m. abscesses and MAC.  When I checked my cultures from my previous clinic visit in August they were negative for both bugs(for the first time).  I figured I was home free.  I figured wrong.  Ever since I started culturing this tuberculosis-wannabe disease, my cultures have shown evidence of it within days.  I guess it took the full 8 weeks for the MAC to grow this time around.  This is a positive sign.  It means that my disease burden is smaller.  However, it is still there...

Why does this bum me out a bit?  It's true that all CFer's culture bugs constantly.  I already knew that I will never completely get rid of the mycobacterium.  The goal is to suppress it until it's no longer visible in a culture.  That means that it is being well controlled.  I guess I'm frustrated, because I thought I saw the light at the end of the tunnel.  I was hoping that the end of an era was within my sights.  I was told that I could start weening off of some of the drugs I'm taking after one year of clean cultures from mycobacterium.  I was under the impression that the year was going to start in August.  I was wrong.  The year has not yet begun.

The good news is that I feel really good and my PFT's are still holding steady.  I really feel like this is a good treatment plan.  The other good news is that a clinical trial will be starting at my center in a few months using inhaled Arikace to treated resistant MAC.  Right now the FDA put a hold on this trial, but I'm really hoping it's not for long.  Dr. Dazzle said that I am at the very top of the list to be contacted when that study opens up! 

Lesson learned...don't assume your culture is clean before the final reading!   I'm going to try the patience thing next time.

Nothing and Everything

Two lovely people pointed out today that I no longer blog.  It has been a while.  I haven't quit.  I've just run out of things to write about...   This writers block seems to have coincided with my excellent health status as of late.  This blog has always been my respite when I was feeling confusion or fear related to my CF.  I can honestly say that I have not been having any of these feelings.  I had clean margins following the pre-melanoma skin excision.  At my August pulm appointment, my PFT's were higher than they had been for 10 years and I feel equally as excellent! 

So what have I been filling my days with over the past two months, now that I have moved into a phase where I'm not being forced to obsess about CF day in and day out?  I've been working hard, loving my family and enjoying my off time immensely.  In the past 2 1/2 months I've traveled to New York City, Nova Scotia, Washington DC, Boston and Toronto.  Half of this travel was for work and half was for play.  My very favorite experience from these trips happened on my getaway with my husband to Boston.  I got to knock Whale Watching off of my bucket list.  It was absolutely breathtaking...amazing...wondrous!

Last year at this time I feared that my life and my health would never return to "normal".  I was grieving the loss of the life I had before I had to incorporate CF into every hour of my existence.  For the past 2 months I have gotten to experience life as it was again and I couldn't be more thankful.  I don't want to waste a moment of it.  I now do an hour of treatments a day, take a couple handfuls of pills and complete an hour workout...CF does not own the other 22 hours.  So, I guess that's a big part of the reason I haven't been blogging.  I really see this as a CF blog and for now, at least, CF has been put in its place.

I came across 'Desiderata' today, I thought it related and I thought I'd share...

Go placidly amid the noise and haste, and remember what peace there may be in silence.

As far as possible, without surrender, be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant, they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit.

If you compare yourself with others, you may... become vain and bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially, do not feign affection. Neither be cynical about love, for in the face of all aridity and disenchantment it is perennial as the grass.

Take kindly to the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul.

With all its sham, drudgery and broken dreams, it is still a beautiful world.

Be cheerful. Strive to be happy.

Max Ehrmann c.1920

Freeing

You Don't Need to be Happy or Positive

by Patty Sherry, author of Share Your Love Story

Ridding myself of ALL negativity,anger, fear, and sadness is not my goal. Getting over this is not something I need to do.

Don’t get me wrong, I love to be positive, happy, and to feel good, the key is I dont NEED to.

Being angry all of the time can make you sick; some say such negativity is toxic! I don’t completely agree with this belief. I say that anger, fear, and sadness is as much a part of my human experience as LOVE is.

Avoidance of these emotions is not necessary.

That kick in the stomach, pain in my heart, or that headache actually comes from the belief that these “negative” emotions are somehow wrong, bad, or a state of being I need to get myself out of.

Believing I should be over this is the hard part!

Fighting the fact that I am here in the first place, and thinking I need to be over there….feeling happy, becomes my struggle!

Positive thinking can make me sick? Well in a way it can…when positivity becomes a need.

So I am releasing the idea that happiness and being positive is a permanent state I must seek, and I am being more gentle with myself when I am in one of those “negative” places.

It’s so easy to get caught up in the belief that I am or YOU are doing something wrong or bad if we are not happy. Igniting that internal judgmental dialogue, ” I’m so stupid!” “Here we go again!” flows easily, even automatically.

Accepting what IS; I have no goal to get over anything! I remind myself that what I feel has to do with THIS moment. Change can come in the next moment.

I become more FREE in each moment, you do too. Running or hiding from any emotion YOU or I feel is not necessary, but rather we can embrace and shift it if we so CHOOSE.

Life is my party…and I can cry if I want to. Freeing isn’t it?

Compliance, Judgement & Progression

A fellow blogger, Piper, over at A Matter of Life and Breath wrote an amazing blog post yesterday and extended a challenge to others to write about their thoughts on CF control and progression.  So here goes...

 I am an old CFer, who has by luck or biology or by the grace of God, had an easier road than most with this disease.  It has limited me little up to this point and for that I am extremely fortunate.   However, I don't ever feel like I have "control" over my disease.  Instead, I feel like I do what I can to "manage" my disease(s) on a daily basis.  It takes A LOT of work.  It take enormous amounts of patience.

Sometimes, it even takes giving yourself a break.  Allowing yourself to not be perfect.  Treatments are crucial...compliance is so very important...  Yet, sometimes, life gets in the way.  My personal definition of compliance involves working hard and doing your best.  Everybody's best is different.  I think people in the CF community like to compare each other.  If this one is running a marathon, while that one walks around the block for exercise, the one who walked is not doing "good enough".  My wish is that people would stop making these comparisons.  There will always be someone doing more than you.  There will always be someone doing less.  I think each of us should only judge ourselves when it comes to self-care. 

I also think that sometimes a person can do everything by the book, yet still decline.  This is the nature of the disease.  I think judgement coming from others regarding this decline is harsh.  That person who is declining is often judging themselves harshly enough already, even if they have done everything in their power to stave off the progression. 

This is going to sound odd to some people, but I honestly feel judged for being "too healthy" within the CF community (no, I'm not complaining about being a too healthy CFer...I'm fortunate!).  A lifetime of doctors, hospitals, pills and daily treatments doesn't make me a card-carrying CFer in some people's eyes.  Yes, I have been told this directly.  My lung function is not low enough to qualify.  I haven't needed IV's enough times.  I have been told that I shouldn't have feelings regarding my CF, because my road has been easier. 

Here's the deal.  This is MY experience.  This is MY journey.  These are MY feelings.  I admit that my road has been easier, but I am entitled to my feelings, fears, worries.  Just as I am entitled to celebrate successes without being judged.  I wish more people were accepting of that fact that EVERYONE has a unique experience...all of them valid.  Yet, I know that the judgement will continue to exist.  Honestly, it's human nature.  There are people who feel better about themselves when they put down others.  I consider that the judges problem, not the problem of the judgee.
So, I have been feeling excellent lately!  So much so, that I have had very little health-related news to blog about.  Yet, the MAC infection persists.  I have an appointment in a week in a half, where I will be cultured to see if the MAC has been suppressed at all.  If not, we may need to switch things up again.  I struggle with the unpredictability of this disease.  I think I keep motivated to exercise regularly and be compliant with my treatments to give myself a sense of control.  It makes me feel like even if nothing is going to change, at least I'm doing something.

These are my jumbled ramblings about compliance, judgement and progression.  If you wish to take the challenge, read below...
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved one's.

Fun Surgery Pictures

I have my skin excised today.  Besides some excess bleeding, all went very well!  It was relatively pain-free.  I did find out that what I have is pre-melanoma.  This made me feel thrilled that I caught it and took care of it before it progressed.  Now I just need to be more diligent about getting screened annually. 

So here's how things went...

 This is a picture of the eye-shaped cut that he made, prior to removing the actual skin.  They remove down to the fat.

This is after they removed the skin.  They remove all of the skin down to the fat.  I have to wait to hear from pathology to ensure that they got clean margins.  If not, I go back for them to take more.

This is after I was all stitched up.  It required 8 internal stitches.  They used steri-strips on to to avoid external stitches.

In all honestly, it really wasn't bad at all!  It was WAY easier than a PICC placement.  The best part is that I've got friends who have told me that they are now going to get their skin checked.  You just never know with this stuff.  I was certain that the spot was just a benign little freckle.  Who knew?  I hope this concludes all posts about skin issues.  

In other news, we have been having a FABULOUS summer.  We have had a few out of town visitors, we have been swimming quite often, we  have been busy, busy, busy!  We are really looking forward to a 4 day little trip to Washington DC with the kiddos.  I loved my first trip to DC as a kid!  A couple weeks later the hubby and I will be getting away to Boston ALONE for 5 days.  I can't wait to eat my way through the city!

I hope all is right in your world...