Peace, Love, Lungs

Taking a Little Break

2012-01-15T16:34:00.002-05:00

Just wanted to post that things are fine. But the next few weeks are busy and I decided to take a break from my already-irregular blogging. When I come back I do hope to have a better vision of how I want this blog to look on 2012. In the meantime, here a few pics to enjoy while I am away :-)

San Diego, 2005

June 17, 1995!

Barenaked Ladies Cruise 2007

Max 2009

Hope all is well out there with you...

xoxox, deb

Thankful Thursday - The 2011 Review

2012-01-05T16:37:00.001-05:00

(from eliseblaha)

Here is a not-so-short list of things that happened in 2011...

Dog-sat Scinci

Got my eyes checked and didn't need reading glasses....yet!
Dinner with our Neighbors
Read "Sara's Key"
Euchre night at the Schuler's
Lots of dinners with the cousins
Read "South of Broad"
Beer Tent Fundraiser at Winter Blast
Finished a year-long drug study for AZLI, know known as Cayston
Chili Cook Off Fundraiser

A couple of trips to Lansing (won the trophy at the last visit!)

Got 4 haircuts and highlights twice

Read "The Bronze Horseman"
Attended Women's Weekend 20, I am one of the 3 original attendees!

Continued volunteering for USACFA but stopped writing a quarterly column
Didn't not accrue any new debt!
Finished decorating the main floor bathroom

Peace, Love and Lungs Fundraiser

Bought a new grill

Went to Pittsburgh. Ate great food. Got a gold star from the doc.

Read "The Great Gatsby"

Poker night at the Ajini's

Injured my pinky toe, it still bothers me

Easter dinners with both families

BBC outing to see "Water for Elephants"

Michelle S. visited

Skyped with Pam approximately 48 times and sent around 5000 texts

Had a few dinners with the Klinger Ladies

Attended Oscar's first birthday party

Got my port flushed 10 times then had to get a new port in November

Did IV's just 17 out of 365 days!

Read "The Immortal Life of Henrietta Lacks"

Watched Louie run his first 5k

Went on a date with hubby to see "Hangover 2" and ate at Penny Black

Worked out approximately 308 times

Read "Heaven is for Real"

Went to a fancy dinner at The Lark with Louie for our 16th anniversary

Had Ajini family photos taken

Drank 345 Scandishakes, give or take a few (That's almost 34,500 calories!)

Visited with Sue D.

Got an iPhone

Spent some time with my nephew when he was home in the summer

Went to the Stoney Creek Fireworks

Dog-sat Molly twice (see older posts about all the dogs we have watched)

Found a new favorite pizza place, Tivoli's (sorry Alibi!)

Dinner with my friend Andrea and her friends

WW Pool Party

Became addicted to Pinterest and Instagram

Read "The Physick Book of Deliverance Dane"

Saw "Harry Potter 7, Part 2"

Turned 41....just as fun as turning 40!

Beer Tent Fundraiser at Arts, Beats and Eats

Read "The Hunger Games"

Watched Josh play Soccer

Helped Josh scout locations for his senior pics

Went through about 475 portable oxygen tanks

A Family wedding and Shower

A wedding for a work friend

Had a super yucky cold

Observed 11-11-11, 11:11am in style

Read "Zetouin"

Euchre Night at the Ajini's

Attended the 3rd Annual Walk for Will & Hope

Was so relieved my sister Tracy recovered from her double pneumonia

Read "Up From the Blue"

Dinner with Mo and Jo

Found a great retro-style dresser on Craigslist

Two Thanksgiving dinners with Family

Quick visit with Pam over at the Schuler's

Sushi with Josh

Oyster Fest #3

Read "Eye of the Needle"
Discovered an AMAZING Sea Salt Caramel Recipe

Lunch with my cousins

Christmas with our families

Finished a year-long Scrapbook Class called One Little Word,

my word was Present

Rang in the New Year in Lansing

I would say it was a pretty good year :-)

xoxox, deb

Happy New Year!

2011-12-31T22:40:00.000-05:00

Here are two of my favorite versions of "Auld Lang Syne"

The first is by Barenaked Ladies. It is from 2008. I love it for a couple of reasons. One, it was the last time we saw the band before Steve left. The second is Louie and I saw this concert just 7 weeks after my mom died and it really summed up the year for us. I remember laughing through my tears at the cake. I was really glad to see 2008 go. But I also liked the song ended on a positive and funny note.

This version is from the "Sex and the City" movie. The video is not the best in sound quality but you will hear what a beautiful voice she has.

This has been a slow year on the blog and I am not sure where it will go in 2012. I am so glad that there are so many of you that still check. (Blogger Analytics tells me so!) I just wish I was more of a regular poster. I also know better than to make any promises about blogging more.

It will be what it will be :-)

So I will leave you with a simple message. I wish you the happiest of new years and that you have all you need right in front of you, including lots of peace, love, health and happiness. That is all we really need isn't it?

xoxox, deb

Thankful Thursday - A Quick List

2011-12-22T20:25:00.000-05:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Today's post is short and sweet. A quick list of the things I am thankful for as we are just days away from Christmas....

Finding a yummy recipe for sea salt caramels and having Louie make 3 batches of them!
Taking our dear, sweet neighbor to dinner and having cake at her house.
All done shopping.
Mostly done wrapping.
Maintaining my workout schedule so far and having a good plan to keep it up through the new year.
Having had such a great visit watching Scinci the dog.
Discovering more and more about digital scrapbooking.
The scrapbook class I signed up for and will start in January.
Going to visit Pam soon :-)
Getting my new port flushed for the first time today and having it work beautifully.

The whirlwind continues for the next week and I am glad to be feeling good and I am ready to enjoy every bit of it!

I wish each of you a very Merry Christmas! I hope ie it is filled with the things, and more importantly, the people, that you love!

xoxox, deb

Let's Talk About Dogs

2011-12-16T15:00:00.000-05:00

Today I'm thankful for Cincy (or do they spell it Scinci?!) and all the dogs we have watched. I have blogged about our many adventures in dog sitting over the past few years. It's been fun and it has helped us find out what kind of dog we like and we have learned how big of a dog we want. It's been a great learning experience.

Louie has been ready to get a new dog for over a year. I've been the hold out. But I told Louie earlier this year that we could get a dog in the spring of 2012. I know he plans to hold me to it too! I still am not sure I am ready for it.

The idea of getting a new dog is very overwhelming to me on a couple of levels. The physical part of just caring for a dog every day, training it, chasing it if it gets out and cleaning up after it all seems more than I have the physical energy for.

The other side of it is emotional. I simply can't imagine any dog being as great as Max and I also can't imagine going through the pain of losing another dog. Max really was my child and losing him was very hard; completely different than losing my mom but still hard nonetheless. I found this great quote a few years ago on LeLove - “How lucky I am to have known someone who was so hard to say goodbye to.” It can really apply to our pets as well. I wouldn't give up any of the years we had with Max despite how much I miss him now. I know that will be true with another dog.

I would like to thank all the furbabies who have been through our hotel for bringing me closer and closer to this place.

Sasha - She was the only puppy we have watched and we quickly realized we definitely will be getting an older dog!

Nick - Most lovable big furball *except* when there is a thunderstorm!

Lulu - A real sweetheart who wanted nothing to do with us, she stayed in the dining room by herself for most of her visit.

Molly - She has been here a few times and she is getting less skittish with every visit. I will always be thankful to her for crawling under the fence BACK INTO our yard after she crawled out!

Moose - Well.....Moose is a feisty fellow and the only dog who was kicked out of our program. (Well, so was Zorro the cat but we are focusing on dogs!) We tried so hard but he was just more than we could handle, lol!

Tasha - She is a regular. We love her to pieces, except when she tears all the tissues to pieces. She is also the biggest runner of all the dogs. Luckily, she is very food motivated and she will come when you say the word "Treat" even if she is a mile away!

Tico - He was here just for an overnighter. A very sweet dog but he had never been away from home before so it was a little scary for him.

And, of course, our current house guest Cincy. She is an absolute love. She really is the dog that broke through the biggest part of my "not-ready-for-another-dog" wall.

So I am putting it out there in the blogosphere that 2012 will be the Year of the Dog. I do know that it will all be worth it and that 3 weeks into owning a new dog I will wonder how I could have possibly waited so long. Watching the last two dogs, Tasha and Cincy have shown me that I am probably as ready as I will ever be.

So I am trusting the universe to put the right dog in our path sometime next spring. A great dog that needs a forever home where we will be glad to feed it the occasional pizza crust, let it sleep in bed with us, and I will probably put a costume on it at some point. And life will be good. :-)

xoxox, deb

Thankful Thursday - Christmas Spirit

2011-12-08T22:15:00.001-05:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

This week is filled with things I am thankful for as the Christmas season gets under way. In the past 7 years we have had our share of ups and downs at Christmas. One year I was really sick. One year my mom died. Those years it was hard for me to any decorating or other Christmas stuff.

Aside from those years, some years it is just easier for me to do the decorating, shopping and all the other hoopla. Many people have helped me over the years when I needed it. This year I am feeling ok and I have started getting ready for Christmas much earlier than normal. It has been wonderful! I don't feel rushed and I am enjoying the different aspects of the season.

Here is a glimpse of what is going on around here...(these are all Instagram photos from the iphone app!)

We have a houseguest, Scinci. She is my cousin's dog and we are watching her while my cousin and his girlfriend enjoy their brand new son, Jeffrey Charles, who was born today. Scinci is a great dog and she is big cuddler...we love her!

This year I went with only colored lights on the tree. It is a little darker in the room but it reminds me of our tree growing up and it makes me smile.

I have a few of my mom's Christmas decorations. This is one I can remember *always* being out at our house when we were kids. I love having it out and mixed in with my decorations.

Louie and I accidentally started a tradition of buying an ornament that represents our past year. Many years we would get an ornament when we went on vacation. I don't have one from every year we have been together but I have at least 10 years or so. I have made it an official tradition since about 2004. This one was our pick for 2009. It is a cute yellow dog with angel wings. We got in honor of Max. We still miss him very much but this ornament helps us remember him and smile (and maybe shed just a tear or two).

I did our photo cards at Costco again. I am halfway done with them. Here is a sneak peek...I will post the whole card in a few weeks after I mail ours out.

I picked up this cute little decoration at a yard sale. I like how they are a little bit retro and I just think they are super cute! I like mixing things like this in with decorations that I bought or older ones I have from my mom. They all make me happy to look at.

This year I am even baking cookies! These are a super yummy Cream Cheese Lemon Cookie. This was my test batch and they passed. I will be making more in the weeks to come. Louie and I are going to try making caramels this year too. Wish us luck!

I am so excited about these dishes! Quite a few years ago I got some Winterberry plates (by Pfaltzgraff) and I could not decide whether or not to add to them or give them away. I am not one for having lots of special dishes or china. Last year I decided I would get enough plates for 10 people but that was it. This year I found a GREAT deal on Craigslist and got a whole bunch of dishes including salad bowls and some serving dishes. I have tried to use them as much as possible since Thanksgiving. I figured I may as well get as much use out of for one month a year, right?!

So that is what it is looking like around here. I hope all of you are enjoying the start of the holiday season too!

xoxox, deb

Thanksgiving App!

2011-12-02T16:20:00.001-05:00

This Thanksgiving had all the usual stuff to be thankful for. (Lots of extra thanks for good health this year for all of us!) We spent time with both of our families, we ate lots of food, we laughed, we ate lots of food and we enjoyed our afternoon naps.

An added bonus was my BFF Pam was in town so I got to spend some time with her and her family. It is always great fun, and thanks to the iPhone app PocketBooth, we have some fun picture to prove it!

As you can see it brought out the calm, reserved side of all of us!

I was able to keep a nice and steady pace over the holiday and through this week. I am still taking a good hour (or more) nap each day but they feel so great. Louie and I are back on our workout routine. I had to take a break from most of my strength training while I was on IV's and when I got my new port, so it feels really good to get back into that. Yes, really, it does!

Now I am in the marathon to Christmas. Louie and I sat down and planned who were seeing and when, what we were making for treats and we started our shopping list. I just do a little bit every day and it feels great to be making progress. I already have our Christmas cards...I will get them out next week.

I hope everyone had a healthy and enjoyable Thanksgviing and that the next month brings only good things to all of you!

xoxox, deb

Thankful Thursday - The Original

2011-11-24T16:03:00.001-05:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

I have so much to be thankful for and thanks to this weekly feature, I am pretty good about sharing it. Today I am thankful for taking photos. I have driven people crazy in the past with it but it really is nice to have a photo to look back on to help us remember where we were and how far we have come. This is Thanksgiving 2007.

So much has changed since then but I am still very, very thankful. For the photo, everyone in it and much, much more.

Happy Thanksgiving to all of you who are kind enough to read my little ol' blog, I am thankful for you too!

xoxox, deb

Thankful Thursdays - Drugs, Dressers ad Ports

2011-11-17T22:18:00.001-05:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Clearly I am having a hard time staying on the blogging band wagon but at least I try to come back for Thursdays. I am always motivated to focus on what I can be Thankful for :-)

Since the last time I posted I finished a week of IV's but kept my PICC line in, just to be safe. I ended up needing it 4 days later, after I started running temps again. I am now in the home stretch of 10 additional days of drugs. Louie and I have agreed not to do a 7-day course anymore, my bugs are just too stubborn! Anyway, the drugs are doing their thing and I am feeling better so for that I am thankful.

This past Monday I had the port in my arm removed and a new one put in on my chest. I am very thankful it went well. I had some sedation but not too much and I didn't puke afterwards, always a good thing. :-) After the first day the pain hasn't been bad at all. When they took the old one out they showed me where the catheter had worn out and cracked. I am very thankful I was able to use it for 6½ years.

Another milestone this past week was 11:11 on 11/11/11.....here is what I was doing:

I know....very exciting! And I captured the front screen on my iPhone too:

And a fun thing to be thankful for this week is this awesome dresser I got off of Craigslist. I absolutely love it!! The problem is I want 3 more just like it. I have quite a few options for where to put it. I think it will start out in the laundry room and move around the house until I find the perfect place for it. And in the meantime, I will keep looking on Craigslist for it's twin!

So, it has been kind of low key around here but things are headed in the right direction. Looking forward to the holiday season, got to start making lists and deciding what crafts I want to make, what goodies to bake and getting a new pic of Louie and I for our Christmas card.

Hope all is well out there in the world and with you!

xoxox, deb

Love is my Religion

2011-11-05T00:45:00.001-04:00

xoxox, deb

Thankful Thursdays - Health Part 2

2011-11-03T15:24:00.003-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

It has been an eventful week!

My sister is home from the hospital and getting better everyday. I am so happy about that. :-)

A couple of days after she went home, I started running some temps so I went on IV's. Then my port was giving me problems so I had to have it checked out. It is kaput. It has a leak in it. I am bummed, but very THANKFUL that I had it for over 6.5 years without any problems!

I got a picc line put in for now and when I am feeling better I will get the old port taken out and a new one put in. I am going to opt for the chest model versus in my arm. There are some benefits t the chest over the arm, one of which is I could (in theory!) access myself!

So this week I continue to be THANKFUL for my sister getting better and for my IV's doing their job and making me feel better each day!

xoxox, deb

Thankful Thursday - Health

2011-10-26T11:54:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Yes, I know it is Wednesday but you will see why I didn't want to wait. First, I apologize for letting four weeks lapse, especially after a post in which I mentioned being sick. Thanks to everyone who checked up on me.

There is Good News, Bad News, Good News.

Good News #1 - My cold stayed just a cold. I do still have a cough that is different than my usual but nothing to be concerned about.

Bad News - The reason I stopped posting was my sister T got pneumonia (she does not have CF but is a carrier) and it got real serious real quick and she was put on a vent. I immediately went into tunnel vision. I focused on being there for her as much as my health allowed and I continued to do all my treatments so I stayed healthy. There wasn't much time for anything else. I did post some updates on FB but even then it was not very often.

Good News #2 - My sister is doing SO, SO, much better. She got off the vent last Friday (after 9 days). She had a couple of days where she was agitated and confused but that has all resolved itself. She even just texted me to say she is completely off O2! So, I can finally breathe a sigh of relief. (And so can she!)

I will try not to leave you hanging in the future, I know how frustrating it can be to wait for updates when someone is sick. I will designate a blogger should a similar situation ever arise.

xoxox, deb

2011-09-29T16:28:00.001-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

This one is short and sweet. I am thankful that I am still fighting the cold I got on Monday and that it hasn't gotten to the point of turning into a cf issue so far. (Apparently the fates felt tempted and threw this at me on the one year mark of no iv's, when I may have been bragging on Facebook!) Off to blow my nose, wash my hands, take some cold medicine and hope it ends soon.

xoxox, deb

Thankful Thursdays - Cayston

2011-09-22T09:56:00.002-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

As of today, it has been 361 days since I have been on IV's. This hasn't happened since maybe 2003 or 2004. It is a pretty big deal!

I do wonder what I can attribute this long stretch to. I think the new inhaled antibiotic I use, Cayston, is the main factor. That is the drug I did the drug study on. It was in September of last year that I went from the placebo to the real drug for 6 months Then when the study was done I started a month on, month off regimen.

That is the only real difference in my routine. I still workout, maintain my weight, make sure to get my rest, flush my sinuses, etc. I don't want to give credit solely to the drug because I do work hard everyday at maintaining my health but I think it is not a coincidence that my IV free year began when I began the drug.

So I am thankful for Cayston!

As the months have gone by without IV's, I have noticed I can do a little bit more of the things I used to. I run errands again, although I will use the scooter if I am going to Target or Kroger. Sometimes I even will do more than one errand in a day. I know it sounds silly but that is a big deal.

I have also been able to do more around the house as far as small projects or some light cleaning. It is so nice to be able to actually make things better around here instead if just having to watch the clutter pile up (or the dust!). Being able to do these things helps me feel like I am

contributing to our family more and doing my share. I do still need to pace myself and there are some weeks where I nap more than others but I am ok with that.

Working on my "One Word" album and focusing on my word (Present) had also helped me enjoy this streak of stable health in the moment. I know it won't last forever but it *IS* happening right now so I am enjoying it as much as I can. And I know that all the things I am doing around the house will make it easier whenever I do need IV's again because I will be surrounded by calm.

Louie and I are headed to Pittsburgh to see my Transplant doc in October. I am hoping he is so pleased with my status that we do not have to go back for 1 year!

Today is a great Thankful Thursday!

xoxox, deb

Thankful Thursdays - Memories

2011-09-15T15:26:00.001-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

This week I am thankful for memories. This past week brought back a lot of memories. September 8 was the day we had Max put down. September 11 was the anniversary of the Twin Towers but it was also my mom's birthday. All of these gave me reasons to cry and be sad. And I was.

But then I started to remember the good memories surrounding each event.

I remembered my mom's last birthday and the big party we had for her. She loved everything about it especially that all her family was there. She couldn't believe that so many people cared about her and were there to celebrate her birthday!

I remember how everyone was nicer to each other after 9-11-01. So many local businesses had their flags flying at half-mast. I remember going to my nephew's football game a few days later and when they played the national anthem, many of us had tears in our eyes.

I remember the birthday party we had for Max when he was 3 or 4. It included 2 other dogs, presents and cakes made from dog biscuits and canned dog food. It was quite silly and fun all at the same time.

I have photos of all three events but I don't need to look at them to remember. That's the beautiful things about memories, they live within us and we will have them with us forever.

xoxox, deb

What I Have Been Pinning

2011-09-13T22:48:00.000-04:00

I wrote a while back about a website I was having a lot of fun with - Pinterest. You can see my link on the left side of this page.

Here are a handful of things I have pinned lately:

http://pinterest.com/pin/193125803/

http://pinterest.com/pin/163033922/

http://pinterest.com/pin/159294325/

http://pinterest.com/pin/115583049/

http://pinterest.com/pin/106932426/

http://pinterest.com/pin/87089899/

http://pinterest.com/pin/172629920/

I have found such a wide variety of fun ideas and it is great to have somewhere to keep them all for reference and for inspiration. If you have been thinking about joining, you should try it!

xoxox, deb

Thankful Thursdays - Two Weeks of Thanks

2011-09-08T14:39:00.003-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Blogging has been a little light lately but I do always try to blog on Thursdays. There is always so much to be thankful for. Big and small, it is all worth celebrating!

Here is a list of things I have been grateful since my last Thankful Thursday post:

A great trip to Lansing even though we did not win the trophy.
Working towards *hopefully* going to visit Pam soon!
A great afternoon helping my nephew scout locations for his Senior pics.
A surprise visit from my other nephew from Florida!
I am grateful beyond words to all the people who worked the beer tent at Arts, Beats and Eats! Many people have done this over and over, some people work more than one shift, and then my cousin, her husband and her daughter all work multiple days! It is crazy how much they do for me. It is overwhelming and humbling at the same time. I think I have run out of words to express my gratitude to them and those who have helped us fundraise over the past 2 years.
Still feeling good and just a couple of weeks away from being off IV's for ONE YEAR!!
I finished another month in my One Word album:

What are you thankful for?!

xoxox, deb

Thankful Thursdays - Nieces and Nephews

2011-08-25T22:35:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

This past week has been a busy one but in a good way. I am grateful for being able to keep up, for the most part. I am particularly thankful for spending time with my niece and nephew. I have 5 of them but only 2 that live in Michigan. I spent a lot of time with all 5 of them when they were younger and I have always enjoyed being an aunt. I have always enjoyed spoiling them, shopping with them or just hanging out.

My two oldest nieces moved out of state when the were adolescents so I don't see them as much as I would like. Now they are grown women and it seems harder and harder to keep in touch. I know I need to try harder and let them know just how much they mean to me. It takes a lot of work and it is so easy to come up with excuses. But, if you love someone you let them know it...and often!

I have a nephew that is going to college out of state so I only see him a few times a year. I try to keep in touch with him on FB and Skype but, again, I could do more. I know he is working very hard and I am so proud of him.

The two that are here in MI are getting older and almost done with school. Who knows where life is going to take them. So, I am enjoying the time we can spend together now. We have a good time when we are together, there is always lots of laughs. And I try to be there in anyway I can. I hope I am 1/10th the aunt I am to them that my aunts have been to me.

xoxox, deb
P.S. I will find and scan a photo of all of them tomorrow.

Thankful Thursdays - The Past Week

2011-08-18T17:49:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

This week I am thankful for:

A new haircut - this always makes me feel better. If I could make it look like my stylist does I would be REALLY thankful!
Seeing out of town friends - it is nice to be able to pick right up where we left off. :-)
Book Club Birthday - our book club just turned 11! I have met some great women through it not to mention all the wonderful, and occasionally strange, books we have read in that time.
Getting my port flushed - this is great because I am able to go to a local hospital for it now, so it is only 15 minutes away instead of 45. I have to go every month when I am not using IV's. I have needed a port flush for the last 10 months :-)
Meals with friends and family - this is definitely worth being thankful for. It can be a quick lunch during the week or a long dinner on the weekends. Any time spent with people I love is great!
PJ Days - I try/need to have at least one day a week where I do not have to go anywhere and I can stay in my PJ's all day. It helps me get reenergized for the days ahead and it allows me to tidy up the house or work on projects at a nice slow pace. I had that day on Monday and it was just what I needed.
Ronnie & Mandi - For keeping this going on their blog which helps me keep it going on mine. I know how important it is to focus on the things we are grateful for and I am glad they keep reminding me of that!

xoxox, deb

Instagram

2011-08-17T14:18:00.000-04:00

I still love Instagram, the app for iPhone. Here are some of my recent pics.

Pam and I at Graffiti Wall in Ann Arbor last fall.

A cute t-shirt, that holds a lot of meaning, I have decided to pass on to someone else. This pic is a great way to keep the memory without keeping the shirt.

A cute birthday card I got from Hallmark....hard to tell but the writing is gold embossed.

Self-portrait of me working on my One Word album...

My trusty Franklin planner. I have been using one since 1992 and not sure I will ever give it up. I do use a lot of stuff on my phone and computer now but nothing is quite as satisfying as a paper planner when I can mark stuff off as done!

This is the handiwork of Louie. This is our web cam upstairs on the PC. Before the laptop that is where I would always skype with Pam. One night I went to use the computer and this is what I saw. Cracked me up...still makes me smile!

I am loving Instagram. I even found some digital scrapbook layouts that incorporate the unique 4x4 size. I am planning some fun layouts with those. I also want to go through all my pics and find some favorites and create a photo book with them. You can get them done at blurb.com

See you tomorrow for Thankful Thursday!

xoxox, deb

Thankful Thursdays - 41

2011-08-11T22:58:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Well, this post is kind of a no-brainer. ;-)

I am thankful for my 41st birthday. Aside from the "every birthday is a good birthday" mantra, I just had a wonderful week. It was no 40-palooza but it was PERFECT!

First, Louie took the week off. :-)

On Tuesday we went to see "Harry Potter", 3D IMAX. It was pretty good. I enjoyed my M&M's and popcorn too!

On my birthday I woke up and skyped with Pam and opened my prezzies from here I loved THEM! One was this awesome figurine. And she also got me a Tervis Tumbler. These are THE best reusable cups ever!

Then Louie woke up and gave me his presents..all great stuff from my favorite store, Catching Fireflies. Dinner was at J. Baldwin's and I had the yummy Lamb Chops, Louie had the Jambalaya.

Later in the week we headed to the DIA....

There were also visits with neighbors, family, a bonfire, pineapple dessert (twice!), pizza, breakfast, lots of well wishes from so many people on FB as well as quite a few cards in the mail.

Does it get any better than that? Nope... :-)
xoxox, deb

41 Should Be Fun!

2011-08-01T15:27:00.000-04:00

This time last year we were in the middle of 40-palooza. It's great to look back on it and see all the fun stuff that we did, including Pam's AWESOME "present-a-week-for-7-weeks"! And just a few weeks ago I realized it is almost done, I will be 41 on Wednesday.

I haven't given it much thought this year, not like last year. I guess because it isn't a "milestone" per se. It is just another birthday. Of course, in my world, there is no such thing as "just a birthday". They are all cause for celebration. I found this magazine ad once that I cut out and it said "Happy Birthday is a Victory Song". That sums it up perfectly.

Louie has the week off and we are going to do some general hanging out by the pool, go see "Harry Potter", go have dinner at my favorite restaurant, J. Baldwin's, and a quick trip to Lansing where I will hopefully bring the poker trophy home!

As I have posted for years, I love my birthday, I even started this blog on my 35th birthday. I usually celebrate my birthday for a couple of weeks, if not months! This year feels different. I feel settled into my birthday so to speak. Just having the day is enough, I really do have everything I need right this very moment. As cliche as it sounds, just being here to celebrate is enough. I am grateful beyond words.

Happy Birthday to me......

xoxox, deb

Upcoming Fundraisers

2011-07-29T14:49:00.000-04:00

My cousin Terri is running two fundraisers in the next month. Here is the information for those of you not on Facebook.

The first one is a Euchre Tournament on August 27. Here is the flyer:

She is also running a Beverage Tent at Arts, Beats, and Eats in Royal Oak. She will need volunteers, 21 and over, in 4-hour shifts from Friday Sept. 2-Monday Sept. 5. You can use the same contact information that is on the flyer above.

This is the 7th and 8th (I think...might be more!) fundraiser that she has held for me. It overwhelms me to think of all she has done for us. Her husband, sister, daughter, in-laws, friends and so many more people step-up every time she has something and are a key part of making every event successful. I have thanked her over and over, written her many thank you notes, bought her a gift and it just never seems as though I will be able to thank her enough. I hope she knows just how much what she has done for me means to me.

It may not be Thankful Thursday but I am VERY grateful for Terri!

xoxox, deb

One Word Album - Photos!

2011-07-26T15:39:00.000-04:00

At the beginning of the year I mentioned a project I was doing called "One Word Album". The concept is from Ali Edwards. Basically you choose a word for the year.. The word represents something you want to bring more of into your life. I choose the word present. Both for its meaning of being in the moment as well as gifts, in the abstract sense of the word of having gratitude for the gifts/presents in my life. Here is a glimpse into the album.

January included doing a title page with our word and a photo of ourselves at the moment. My photo was from NYE 2010, I figured it was close enough!

It also included writing out some reasons why we picked our word, its definition and our goals for the year. This was a fun page to create and I enjoyed the collage aspect of it.

February's assignment involved taking photos of things we thought represented our word. On a funny note, the upper right photo is of my thumb with a bandaid on it because I was most definitely NOT present when I was chopping veggies and I cut myself. I thought it was a good reminder of the little things that can happen to put us off track.

After February I got a little behind but I was still able to complete my pages for March and April, they were just late.

In June (as I was finishing April and May) I added this note to myself about how I was behind but making progress in catching up. I also was very proud because normally once I get so behind on a project I would just quit but I was determined to keep up with it!

THEN......I got to my favorite project so far, June. The assignment was to create 9 mini-canvasses that could be anything we wanted, related to our word or not. The point was to get creative and have fun. And to stay PRESENT in the process :-) I worked on these in stages over the course of 10 days, completely changing my color scheme on day 3! As the new color palette started to emerge and I began to go through my supplies and pull things that might work, I got really excited.

I would stop in the office and work on it for a couple minutes here and there and just smile at what I saw developing. Here is what the mess looked like after a week (you can see what the old color scheme was!):

Here is a photo of the canvasses mostly done, at this point I knew how I would finish each one, I just had to do it. (btw, it is taken with the Instagram app on my ipPhone which I love!)

Here are some up close pics of each row so you can see the detail:

And here is the final page in my album. I absolutely LOVE it! I love everything about each and everyone of them. The colors, the embellishments, the texture, and just how they make me feel when I look at them.

This particular project has really inspired me. When I did the page in January, I thought it was cute and I was happy with what I created but this page feels so much more like me and the art I want to create. For a long time I have dreamed of doing collage work with acrylic paints, various ephemera and all kinds of paper. This project reignited that desire for me and I plan to nurture it more and actually start creating some works of art. I am very excited!

I hope you enjoyed this glimpse into my project and it inspires you to get crafty too!
xoxox, deb

HAPPY BIRTHDAY!

2011-07-21T12:57:00.000-04:00

To my oldest nephew Eric, he turns 19 today!

I miss you and I am so proud of how hard you are working! Love you lots!!
xoxox, aunt debbie

Thankful Thursdays - Blog Ideas

2011-07-21T12:54:00.000-04:00

I am thankful for having a handful of ideas to blog about in the coming weeks...
1. Fundraisers
2. One Word Album
3. Blogging over at CF Roundtable
4. Finished half bath
5. Birthday countdown (The Year of 40 is almost over!)
6. More iPhone love - Pandora, WWF and more
7. Update on the Post-Its

So, is this a cheater post to say what I will be posting about? LOL!
xoxox, deb

My Name is Debbie...

2011-07-20T15:55:00.000-04:00

and I addicted to Instagram. It is an app for iPhones that makes taking quick photos so fun! Here is just a sampling of the pics I have taken:

Isn't it fabulous? And then I just found some templates to do a digital scrapbook page with photos from Instagram. I love it! If you have a smart phone, you NEED this app. It will change the way you take photos. I promise!
xoxox, deb

Thankful Thursdays - 5 Minutes

2011-07-14T21:36:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Since I last posted I haven't really felt any worse or any better. I am still able to do most of my day-to-day stuff, i am just needing a few more breaks. I have talked before about doing things in 15 minute increments. Well, this week I tended to break things down more and do 5 minute increments. It is kind of amazing what can be done in 5 minutes. That is what I am thankful for this week.

Here are some examples:

~ Fold a basket of laundry

~ Put it away

~ Pull weeds in a flower bed

~ Sort mail

~ Empty the dishwasher

~ Sort scrapbook supplies

~ Clean a sink

I think you get the idea. Some days it is hard to not get annoyed by having to work on things at such a slow pace. But, I know by breaking it down into really small steps it will all get done eventually. It's a lesson I seem to have to learn over and over. I am thankful for the chance to keep learning. :-)

xoxox, deb

Hmmmmm.....

2011-07-08T15:29:00.000-04:00

Today is just one of those days. For no obvious reason, I am more short of breath than normal. I had a busy weekend and a productive, but not too crazy, week. I even ran errands for a few hours yesterday (do garage sales count as errands?!). I have been doing all my treatments, although yesterday was my day off exercise. I finished my month of Cayston yesterday.

So, I am trying to figure out why I don't feel great today.

This is where the mystery call CF gets annoying. When I start to feel not "normal" I run through my head and try to examine my patterns lately. I try to figure out if it is CF, being a woman, being 40, or all 3! Sometimes I can figure it out and adapt accordingly and sometimes, like today, I just don't have a clue.

So, I will take a step back an take it a little bit easy but NOT miss any treatments. I have turned up my oxygen. I will go take a snoot snooze soon, eat a good dinner, workout, etc. And hopefully tomorrow will be better!
xoxox, deb

P.S. This helps too... dog-sitting Molly for the weekend ;-)

Thankful Thursdays

2011-06-30T19:37:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

I am thankful for today.

For the sunshine,

for the flowers my sweet neighbor brought,

for feeling ok,

for fun things like iPhones,

for friends like Pam,

for laughs with Louie,

for yummy candy,

for crafty projects,

for breathing in and out,

for choosing to embrace this place I am in,

for the people I have met through the internet and because of CF,

for lists and plans,

for an awesome M*A*S*H t-shirt,

for garage sales,

for all of it.....

I am thankful.

xoxox,

deb

Update on my "Friend"

2011-06-27T17:06:00.000-04:00

I am a little paranoid of jinxing things so let me tell you how my "friend" is doing. ;-)

My friend has been feeling ok lately. She hasn't been on IV's since last September. I know...wow?!! That is almost a year. That hasn't happened in probably 10 years. She can't believe it. She hasn't done anything different except participate in a drug study. Coincidentally, the same one I was in. Weird, huh?! She still works out 6 days a week, maintains her weight, gets her rest and all that stuff, too.

Some days are better than others as far as her energy and her shortness of breath. But it can be measured in a relatively small sliding scale. She doesn't really have any extreme swings in either direction. Although at the end of the months where she does the new drug she does feel pretty good! She is able to get things done on her to-do list and work on projects around the house. She even does errands sometimes, including grocery shopping.

She is ok with how things are right now even though the daily grind of it all bugs her sometimes. It can get annoying when she realizes 2-3 hours of her day are devoted to her health care routine, not counting naps, resting, eating and sleeping. When she has to go pick up oxygen or take a break from folding laundry she will feel a pity party starting. Sometimes she indulges it for a bit but usually she will tell herself to get over it. Because it really isn't so bad. She knows if she just slows down and just focuses on right now and what she has to do in that moment, she will feel better.

She knows it is very important to live in the moment of each day that she feels this for she knows each one is a gift and she does not take it for granted. She remembers days when it wasn't all this calm and she knows, at some point, things will have to get crazy again for her to get to that next stage. The one where she is running marathons and traveling. :-)

She can't believe she has been going to Pittsburgh for 3 years (just like me ;-)!) and is still not listed. She doesn't know why this is how her story is playing out but she tries to accept it. The limbo. The waiting. It will all lead to great things. She is sure of this, now more than ever. Her and I talk a lot about this since our paths are so similar. It is almost like I am "she" and "she" is me.

xoxox, deb

Thankful Thursdays

2011-06-23T21:28:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

In the past week, there has been much to be thankful for...

1. Louie and I celebrated our 16th wedding anniversary! I have blogged about what a wonderful hubby he is so for today (and those of you not on FB) I will just post this...

2. I didn't have as much energy as I would like this past week but I was able to ration my spoons and do most of the things I wanted to. I am thankful for knowing my body well enough to know when to take it easy.

3. We spent some time with Louie's family on Sunday and had our photos taken by Sara!

4. I am REALLY thankful that I finished my last big work project. I delivered the last pages to Harper for their scrapbooks. I am so relieved to finally have that done. I did renew my business name, so "Designs By A Genie" is still in business but now I will just work when I feel up to it. Which is really what I have been doing, I just don't have any unfinished projects now!

5. I am almost caught up on my One Word album. It is helping me get the itch to scrapbook again....I am very thankful for that!

6. On a sweet note, I am thankful for Hershey's Air-Delight Kisses. I bought these today and they are yummy!

xoxox, deb

Thankful Thursdays

2011-06-16T09:25:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

This week is a random assortment of thankful things

~ I am thankful for two different visits I had this week - one visit was with my aunt and the other visit was with my uncle who just had heart surgery. It can be a challenge sometimes to coordinate my schedule with each of them. Between my health and dr. appts. and their health and dr. appts. it can sometimes take months to finally connect. But I am so glad when we do! I love both of them very much and they have always been a positive and supporting presence in my life.

~ I am thankful that I continue to be a part of USACFA, they publish the newsletter "CF Roundtable" that I write for. Actually I just stepped down from writing my quarterly column but I will still write a couple of times of year. I will be writing a lot for their blog. I know I have a hard enough time blogging here but hopefully it won't be too hard doing both! They also just redesigned their whole website so now you can subscribe to the newsletter and receive it electronically!

~ I am thankful for being able to dogsit. Right now we have a little Yorkie-poo named Sasha. It is my cousin's dog...she is staying with her dad for a few days (the uncle who had heart surgery). She is little, like 4 lbs! It is weird to have such a small dog. We have to take her outside on a leash which is work but she would be able to get out under our fence in a flash. She is a puppy so she has a lot of energy too. Aside from being happy to help my cousin, I also like the "dog fix". I am still pretty sure I am not up for a dog full time, especially a puppy, but having a dog here every few months is a nice boost.

That's my list for today....what are you thankful for?

xoxox, deb

The Post-It's are Back!

2011-06-14T22:13:00.000-04:00

Some of you may remember this post from 2009. Louie and I made a list of things we wanted to do and people we wanted to see for that summer. We wrote each thing down on a Post-It. Then we posted them on the fridge so we saw them every day. It helped remind us what we wanted to with our free time. It worked really well and I even kept the notes to look back on.

This week we sat down and began our list for summer 2011. I won't post it yet as it may contain some surprises! I just wanted to mention it in case some of you want to do your own list.

The reasoning behind the list came from us always saying"Oh, we really need to make plans with so-and-so" or "We should go to that festival", etc. And originally it was just for summer. Which makes sense for a lot of people. They make the most plans for the summer because if they have kids they are off school and they need to keep them busy. As I was writing out our notes this year I asked Louie why we didn't do this year-round. The kid thing is not an issue for us so why not make a list every quarter? I think we are going to give a try and make a new round of Post-It's in the fall too!

I will share some of the summer Post-It's as we do them. Why don't you sit down with your family and make your own list? You won't regret it, I promise!
xoxox, deb

Thankful Thursdays - Technology

2011-06-10T13:59:00.003-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

It's been a few weeks but I am still thankful :-).

Here's a few techie things that I am thankful for....

1. DVR - Seriously...what did we do before this awesome invention?! I can't imagine having to watch "Minute to Win It" in real time. We watched it yesterday in 7 minutes! Some other faves to watch ONLY on DVR is "Chopped", Survivor"....I am seeing a theme here. Maybe it is the reality shows that require DVR. In addition to the fast forward option there is the benefit of how easy it is to record something now... remember having to use vhs tapes? What a PITA! And I love being able to pause live TV. So, basically, yep, I love my DVR!

2. Skype - (This assumes I have already expounded on the virtues of the internet itself and all its capabilities...!) I love *Skype*. It has helped me keep in touch with my bff Pam as she has moved across the world, literally. From Seattle to Singapore to South Carolina, I can see her beautiful face anytime I want to. It has helped bridge the distance in such amazing ways. We have had many heart to hearts on camera....it is *almost* as cathartic to cry with her on Skype as in person....*almost*. And we have had our share of laughs over Skype, we have cooked while we chatted and even checked in at public venues. I have also been able to keep in touch with other friends and family, some a few towns away and some a few states away. It really helps us stay connected. So, THANK YOU Skype inventor....you ROCK!

3. My Altera nebulizer - This is a handset used for one of my inhaled antibiotics. It has been designed to take only 2 minutes to inhale .75 mg of medicine. This is HUGE people, trust me! I can only hope this technology gets approved for all CF-related inhaled meds. I currently spend 60 minutes a day on inhaled drugs, not counting Cayston (the one approved for the Altera). Add to that another 90 minutes of drugs when I am having an exacerbation. If this nebulizer can eventually do all my drugs in 2-3 minutes that will bring me down to 25 minutes or less for 9-10 treatments in TOTAL! What a time saver!

What technology are you thankful for?

xoxox, deb

Life Through the CF Filter

2011-06-01T16:48:00.001-04:00

So I was browsing on Facebook, with my eyes kind of glazed over, when I saw a link to a video titled "Dear Blood I Just Spit in the Sink". So, I naturally assumed it was posted by someone with CF. Having actually spit blood in the sink on more than one occasion (including one time when it was more of a spewing) I knew what it was like. So I thought I would click the link and see if I could share my words of wisdom with this fellow CF'er.

So I clicked.

(You can if you want, here it is)

I watched.

Ummm.....this isn't about CF.

It's about flossing your teeth.

Ah....life through the CF filter. I sometimes forget there are very mundane reasons for things like blood in the sink. I also worry about people who run up the stairs too fast (aren't they going to get short of breath?).

Yeah, life with CF...never a dull moment.

xoxox, deb

3 Songs #3

2011-05-27T14:14:00.000-04:00

Since I seem to be drawing a blank, I decide to revisit a theme post I have done before, "3 Songs". Basically, I am going to open my iTunes and put it on Shuffle. I will then blog about the 1st three songs that come up, while they play. When the song changes, I change the subject. I may talk about a time I heard the song, a memory I associate it with or how it makes me feel.

Song #1 - Running Out of Ink by BNL - This is not a song I love that I could sing word for word. But it does make me bummed all over again. I really miss the old 5-member BNL, the one where Steve wasn't a cokehead. I haven't been to a concert since Louie and I went on NYE 2008. And, honestly, I have no burning desire. I am trying not to fault the remaining guys in BNL but it just doesn't feel the same. I know diehard BNL fans would disagree with my position....but it is what it is. There are a few "Steve" songs that, whenever I hear them on my iPod, I get mad all over again. I love "Break Your Heart" and "Call and Answer". Totally bummed I will never see them all together singing those again. Of course, it is possible that in 10 years he will be back...a girl can hope right?!!

Song #2 - Christmas Time Again by Traveling Wilberries - This song was from a compilation CD from my neighbor Larry. He puts them together every year. I am not really familiar with the song but I really do like the sound of it. Larry is a wealth of knowledge of obscure things, "B side" music and strange foreign films. He always has a movie to discuss with Louie that is usually very strange and has subtitles. Larry loves to DVR everything under the sun and watch TV til the wee hours of the morning. Many times when I go to bed at 1am I will see the glow of the TV still coming from his house. We have been very lucky to have neighbors like him and his wife Carolyn whose company we enjoy. Our relationship goes beyond just needing to borrow a cup of sugar. Next up for all of us is a Wizard tournament. I REALLY want to win!

Song #3 - Easy by BNL - Guess I have a lot of BNL songs in iTunes...152 out of my 1180 songs are by BNL! This particular recording was from the CD that they recorded here in MI in June of 2007 at Pone Knob. Louie, Pam and I went. Louie ended up in a better seat than Pam and I because we had to scalp a ticket. But it was the quintessential Pine Knob concert. Awesome summer day with a nice breeze blowing. It was the last BNL concert Pam and I were at together. We had a great time and if I recall they did sing "our" song, "Call and Answer". That's always a highlight for us. They were also filming a DVD that night. I think you can see Louie on it...I would like to watch on a really big screen to see for sure! Here are my pics from that concert:

(Before I could stop the iTunes, the next song that came up was "Driedel, Driedel" by, who else, BNL!)

Hope you enjoyed this post...I figure *a* post is better than *no* post right?!
xoxox, deb
P.S. Just because I skipped Thursday doesn't mean I am not Thankful :-)

Thankful Thursdays - Quotes to Think About

2011-05-19T18:55:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

As I have mentioned, I recently have become addicted to Pinterest. It is a virtual pin board where you can pin pretty much anything from the internet that inspires you, makes you laugh, or is useful to you in some way. My page is linked on the left side of my blog.

Today, though, I am specifically thankful for whoever came up with the quotes below and many others that I have saved. You can go to my page "Quotes to Think About" and see what I mean. I also have a folder of "Funny Words". But it is the quotes that have made me stop and really think that I am thankful for today.

I have done a lot of personal work, self-help stuff and counseling over the years so I like to think I am somewhat in tune with things, how people work and what makes this life what it is. The quotes here and on my page all helped me look at something in a new light. It gave me a perspective on something I had never seen before. Here are a handful that made me stop and *really* think about what it said. I love that I can still learn. I love that I can be humbled by realizing there is so, so much that I don't know. I love each of these quotes below for the lessons they have to teach me. Each one spoke directly to my soul. I hope they do the same for you.

xoxox, deb

List 10 - 10 Random Things and Thoughts

2011-05-16T23:41:00.000-04:00

Look for a return to Thankful Thursdays this week....I was lazy last week and then Blogger didn't want to cooperate at 10:45pm on Thursday night when I was going to post. Laziness won out.

Onto today's list:

1. I just realized this week I am going to be 41 soon! I have been so focused on turning 40 and enjoying being 40, I forgot that another birthday is on its way! 41 won't have quite the hoopla of 40. It will be a more sedate affair but I am sure it will involve either crab legs or lamb chops, a bumpy cupcake and maybe a fun little prezzie. Sounds perfect to me!

2. Women's Weekend 20 - This was back in March but I am shocked I never blogged it. It was another stellar weekend. One of the cool things we did was hire Sara Gawel Photography to take pics all weekend. It was AWESOME! Here are just 4 of the over 600 pics she took!

3. 15 minutes at a time - I have been using this philosophy for keeping up on the housework as well as various projects over the years. I seem to go in phases of how much I adhere to it. Right now is one of the intense phases. Instead of thinking of ALL I would like done, I simply focus on ONE project in 15 minute increments. When it is done, I move onto the next. This helps me know I accomplishing things even if it is slowly. And 15 minutes seems to be the right amount of time I can work before I need to rest. I am very happy with all the small steps I have made in the past couple of months!

4. Holding pattern continues as far as waiting for transplant. Similar to the 15 minute principle, I work very hard to stay focused just on how I feel *today*. And I am glad to say today I feel good :-)

5. The last few books BBC has read have been good. In March we read the Bronze Horseman, in April we read The Great Gatsby and this month (which I picked!) was The Immortal Life of Henrietta Lacks. They are all worth reading in my opinion and they couldn't be more different from each other, lol!

6. My most recent Google Search success stories include figuring out how to get our dvd drive on the laptop to work, that a supposed "Apple Virus Protection File" was evil so I DID NOT open it, the difference between atheism and agnosticism, and what Jeff Probst did before hosting "Survivor". (Google it if you want to know the answers! ;-))

7. It's time to amp up the workouts a bit. I have been doing pretty good with my cardio and weights. This week I am going to come up with a 10 minute routine for my core and add it to my morning routine. After that becomes standard, I guess I will have to walk more/faster and up the weights. It is nice to seeing progress over the months.

8. Homemade popcorn is a gift from the heavens. 7 or 8 months ago we started making homemade popcorn as an evening snack and it has become one of my favorites. I am lucky that I need extra calories so I can put lots of melted butter on it too. I have to say it is even better than movie popcorn!

9. I finished my first month of Cayston (formerly known as the Study Drug). I will be doing it every other month. I did start to notice some small improvements in the last two weeks. It will be interesting to see how I feel in the month off.

10. Movies - Way back in 2002 Louie and I saw more than 50 movies. Now if we see 5 in a year that is a lot. Last week I went with some women from BBC to see "Water for Elephants" (it was great!), this weekend we are going to see "Thor" for Louie's birthday and I definitely want to see "The Hangover 2" at the movies. Oh, and we will DEFINITELY be seeing the last "Harry Potter" movie on the big screen...maybe we will see more than 5 movies this year!

What's going on with YOU?
xoxox, deb

The Big Reveal (Lots of Pics!)

2011-05-06T23:30:00.000-04:00

So, here it is as promised. Let's start with the window treatment. Here is what has been up for 2.5 years.

Here it is naked and with the Command Hooks I used. I liked that they are not permanent. As you can see I am not able to hang any sort of blinds on the inside window frame as it is flush with the wall. So my two options were a regular curtain rod or a shade that fit inside the window frame.

An up close view of the hooks.

I did take some pics of the shade as I made it and when I downloaded them, they made no sense! What I did was fuse some white muslin with my print fabric and then trimmed it with pinking shears to the size I wanted. Then using some very scientific math (not!) I figured out where to place my hooks. I cut a very small slit for each hook. With Michelle's help, we hung it up and got the placement right. Then I sewed the white ribbon on. We hung it back up, folded it and tied the ribbon. And here it is:

I am happy with it but it is very far from being perfect. I did learn a lot. I wouldn't bother fusing it together again as it made it too stiff despite using the lightest material. Here it is during the day:

The other sewing project was to make a cozy for that hideous black cable coming out of the wall. This went super quick and it also has its imperfections but I like it so much better than the black!

Here are some views of the room from the doorway. The completed hoop wall that I just LOVE! I should take some up close photos so you can see what it is each one.

The wall with my craft table and cute new window treatment!

Here is what my closet looks like with all of my crafty stuff organized it. I love the shelves my father-in-law made for me, they gave me so much storage.

Here are various corners and spots in the room. This photo features the lamp that started this whole project. While I did use the window treatment fabric as the continuos theme in the room this lamp still fits in well and it makes me happy to look at.

This is a garage sale treasure that sits next to my craft table. It holds a hodge podge of stuff in a mix of fun containers, some new and some treasures. I like having stuff within my reach instead of all in the closet.

This is one of my favorite pieces in the room. This china cabinet was my mom's when she got married. I have been trying to find out its history but haven't had much luck. My mom kept it in her basement as long as I can remember. I knew I wanted to have it out and used every day, I just love everything about it.

The top shelf holds a lot of my camp memories....

And the second shelf are some of my favorites pics (and Debby)...

On top I have an assortment of fun things including our jars of sand from our various trips.

Here is a print from one of my favorite artists, Allison Strine. I have two other ones as well as cards, magnets and collage sheets!

Up close so you can read it :-) (Just in case you are 40 or older, like me, it says "She's sassy, classy and a little bad-assey")

Here was the last project I had to do. It is pretty basic. Just some pops of color to fill in the wall above the computer. I had some 12x12 artwork that I got at Hobby Lobby for $1.39 each! When I bought them I KNEW I would be recovering them. So armed with my staple gun and these Command Hooks, I knew I was ready.

After I wrapped/painted my canvases, I adhered the strips to the frames. The strips are like velcro, there are two pieces that lock onto each other and both have adhesive on the back. AFter you put two together, you adhere it to your item:

Then you hang your item and then remove, leaving one strip to "set" on the wall and one strip remains on your item.

After you let it set for an hour, you can mount the art back onto the tab on the wall. Now I had to measure where to hang the other two. I used a post-it note to make sure they were the same space apart on each side.

And the I repeated the same steps for the other 2 canvases. Here they are all up on the wall.

I think they might be too close together but it will do for now, especially becase I know how easy it is to remove!

A couple of final pics...

I am very happy that this is FINALLY done. And it is not just something that "will do for now". I actually like everything in this room. And there are a lot of things that I *LOVE*. Now, I only have 8 other rooms to do!
Thanks for looking and I hope you enjoyed seeing the progress.
xoxox, deb

Thankful Thursdays

2011-05-05T19:06:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Well, there is good news. I am done with the office (less hanging some artwork that needs to dry). I will post the pics tomorrow. I want to talk about something else this Thankful Thursday. In my ongoing attempt to get organized in very *small* steps, I have been working for 15 minutes a day in a room. I do the same room for a week and then I start a new room the next week. It gives me great satisfaction to see things get done even if it at a snail's pace. And you would be real surprised how much you can get done in 15 minutes! This past week I have been working in the basement. Which brings me today's reason to be thankful. I was going to organize this:

This is a basket full of cards that people sent my mom when she was sick. I thought I would be able to go through it quick. I thought it would be pretty easy to throw some of them away. I knew I would keep a lot but I thought I could get rid of half. Well, things didn't quite go that way.

I was amazed all over again by how kind people were to my mom when she needed it the most. I was so thankful to see the same names over and over...they never forgot just how much the simple act of mailing a card meant to her. So many people sent her cards after word got around about her cancer diagnosis. I blogged about it. In the very beginning, while my mom was still processing it all herself, all she asked for from anyone was a card. My mom *ALWAYS* loved cards. She loved to give them and really loved to receive them. So when people heard that is what she wanted, they responded. And while they did slow down over the year they never stopped, there was always a few cards a week and she loved every one of them.

When she was staying at our house we taped them all up on the wall so she could see the love people were sending her. And when she moved back home she started putting them in the basket you see above. She looked through them a lot. Just seeing the basket full of cards made her so happy.

So today I am thankful for each and every card in the basket. I am thankful for each time a friend or family member took the time to send her a little note just to know she wasn't alone. I am thankful for people realizing there is always something we can do for those in need. I am thankful to see my name on a card in that basket. I am thankful that so many people kept her in their hearts and prayers. I am thankful I kept them so I can look back and remember people will do their best to give you what you need if you just ask. I am thankful for those 15 minutes in the basement.

xoxox, deb

Getting Excited....

2011-05-03T13:55:00.001-04:00

I *think* I am going to meet my goal of being done with the office by Thankful Thursday.... stay tuned!
xoxox, deb

Thankful Thursdays

2011-04-28T23:58:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

So, I thought this Thursday would be a great time to remind myself how thankful I am for my husband Louie. I have a great support network and he is right there at the top.

For our entire married life he has been the sole provider. My business has earned some income over time but it is just a very small slice of the pie. And my social security is typically used up by all my medical bills. Everything else is up to Louie. He is responsible for keeping our lights on, food on the table, and our insurance in effect. And he never once has thrown it back in my face. He just accepts that this is how it is.

For many years, I was able to do my part by picking up all the slack at home. Aside from vacuuming and cutting the grass I used to do ALL the other housework inside and out. I used to do all the errands. That is no longer the case.

Louie, in addition to working 50 hour weeks, does 75% of all the home stuff now. I do a little bit of everything. But in the time I can fold and put away a load of laundry, he can do 3, so he does. Because it is what needs to be done.

He accepts me and all the quirks I have (except for my driving...he really HATES it!). He just rolls his eyes when I get excited over silly little things. And sometimes, when he thinks I am not looking, he will get just a little bit excited too. He is always willing to listen when I say, "Hey, I have an idea" even though he knows it is probably going to be a little wacky!

He has been my safe place always and even more so in the past few years. We have had some very scary times and some very sad times together. And while he may occasionally shed a tear along side me, usually he is there to hold me so I don't completely fall apart.

I try to let him know all the time how much I am thankful for the fact the he is my husband, my life partner, the macaroni to my cheese. I always worry I do not let him know that enough.

So here is another attempt at doing that.

I am thankful for my husband Louie. Everyday. Truly.

xoxox, deb

The 2.5 Year Room Re-Do!

2011-04-26T13:20:00.001-04:00

Quite a long time ago, in a whole other world it seems, I decided to paint and redecorate the office/craft room. HERE is what it looked like right as I started to take things apart. Well, then my mom got sicker and things pretty much fell apart for a while.

Then 6 months later my friend Maureen offered to paint the room for me. In the middle of her doing that, Aunt Pat died. (Cue the falling apart again).

Since then I have made VERY slow progress on the room. But that is about to change. I have decided it is time to FINISH this project. Just as a reminder of what has been done so far:

The painting of the room - April/May 2009

Be sure to note the awesome black cable sticking out of the wall so high up, this is getting a make-over!

New shelves built by my father-in-law for the closet - June 2009

The first layout of the hoop art on the wall - August 2009

The second configuration created with Michelle S.'s help - April 2010

And finally, the last before pic, how the window has looked since May of 2009.

In the next 2 weeks, I *WILL* be finishing this room, which includes the following projects:

Sew and hang new window treatment
Makeover the cable cord
Hang a few more items
Quick refresh and clean up of the closet, desk and craft table

Then, I will be able to FINALLY post the AFTER pics! I can't wait. I think my goal will be to have it done for next week's Thankful Thursday. K, I gotta get moving and make it happen. Wish me luck. :-)

xoxox, deb

Thankful Thursdays

2011-04-21T18:53:00.000-04:00

his post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Today, in honor of National Donate Life Month (http://donatelife.net/), I am thankful for all organ donors and their families. Choosing to give the gift of life to others when you are at the end of your own is an amazing gift. There are not enough words in our language to express just how selfless it is. In some cases the decision rests with the family and they must make the decision as they began to grieve losing their loved ones. I cannot fathom how difficult it must be to be in that space. I am thankful for all those people who have made that decision for themselves or their loved ones.

I know many people who have benefitted from organ donation and someday I will be waiting for some family to make the hardest decision of their lives so I can breathe easier. I cannot begin to thank them for that, even now. But you can be sure I will always be thankful for the gift.

Please, if you are willing to be an organ donor, be sure you have the new heart on your license. You can go here to register. You can save the lives of up to 8 people. And that is 8 families who will someday write a blog post thanking YOU.

xoxox, deb

List 9 - Things I am Excited About

2011-04-19T23:34:00.000-04:00

Here are just a few things that I am excited about right now:

~ Pinterest - If you do not want a new addiction, do not read this! This is a virtual cork board where you "pin" images you find online that you like. It can be anything: art projects, food, decorating ideas....anything you can think of. Here is my page for you to get an idea of how it works. You can lok at other people's [ins and repin them to your board, it is great eye candy! You do need an invite right now while they are still in the beta stage. If you want to join, let me know, I have 5 more invites.

~ Scentsy - Have you heard about Scentsy? It is a candle lover's dream without the flame and soot. They have tons of great scents! And my BFF just signed up to sell it. If you want to check it out, here is Pam's page. I love Perfectly Pomegranate!

~ Green Tea Gingerale by Canada Dry - look here...this is my favorite pop and I am not a pop drinker. Right now, I have only been able to find it at Target. I hope they keep making it.

~ Sewing - Today my cousin Michele came over and helped me get my sewing machine (one of her old ones actually) working. I am so excited to get a few small sewing projects going. I already repaired Louie's pajama shirt today. Up next is a roman-style shade for the office and the bathroom.

~ Garage sale season - It is almost here, if the weather would cooperate. I have a pile of stuff ready to go to Goodwill so I can make space for new "treasures". I just love the thrill of the hunt and find something I have always wanted for less than $5. Louie hates garage sale season :-)

~ Water for Elephants movie - As I mentioned a few posts ago, this was voted one of the best books by our book club. We are going on a field trip to see it in a couple of weeks. I can't wait to see it. The trailer looks awesome!

So, what are you excited about?
xoxox, deb

Thankful Thursdays

2011-04-14T23:22:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Another easy choice for what to be thankful for this week:

Aunt Pat

Tomorrow will be 2 years since she died. I still feel the loss deeply. But I am so blessed to have had her as my aunt for 38 years. She was the epitome of unconditional love. She was always full of love, happiness and joy. She loved being with people and celebrating every little milestone with them. Everyone who knew her felt she was their personal cheerleader.

I elaborated on this last year.

Yep, that pretty much covers it. Love her. Miss her. Always.
xoxox, deb

Thankful Thursdays

2011-04-07T23:16:00.000-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Here is a quick, but totally awesome, list on a very thank-FULL Thursday:

1. I am thankful for a safe trip to and from Pittsburgh to see my transplant team.

2. I am grateful to Louie for doing lots of driving, schlepping, pushing, supporting for me and even more laughing and eating with me. Never underestimate the power of an amazing support person folks. I am thankful for him every single day.

3. I am thankful for getting an earlier appointment today so we could leave Pittsburgh at 3:30 instead of 6pm!

4. I am thankful for being 40.674 years old. That is what some of my paperwork said today. I think I am going to start figuring out my age this way from now on!

5. I am grateful for the yummy irish cream coffee that kept me awake during my turn to drive (Not so happy about it now, lol!)

6. I am thankful for hearing these great words from my transplant doc, "Things seem to be going good. Keep doing what you're doing. Let's keep waiting to put you on the list. Come back in 6 months".

Yep...thankful....that's me.

xoxox, deb

Thankful Thursdays

2011-03-31T18:58:00.001-04:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

I have taken a few weeks off of Thankful Thursdays but I am back!

This week I am thankful for having time to do some crafting. I am a bit behing in my One Word album but now I am almost done with the January assignments. Should be done with February's in a week or so and then will get into March. Then I am only one month behind! It has been fun digging out my scrapbook papers and embellishments and creating again.

I am thankful for my sewing machine my cousin gave me. I *almost* got it to work today. I hope to have it working in a couple of weeks and add sewing into my regular crafting routine.

This week I am also thankful for the extra time I have had to do some more quiet work....reflecting on the past year, journaling and working out the things I need to spend more time with. I try to do this a couple of times a year. It helps me stay focused on the things and people that make me feel good and fill my spirit. It also reminds how I can give back to people.

I am thankful for a huge group of strangers who came to a fundraiser for me and were generous beyond belief. Nixon Hills folks ROCK!

I am thankful that I got to see a dear friend when she was in town. She is one of those friends who being with her for 2 hours fills me up for the next few days. Love her!

I am thankful for this whole week, it has been much needed as far as a lack of activities. It seems I have been on a whirlwind for quite a while and it was getting to be too much. My head and my priorities seem so much clearer during weeks like these. I must find a way to have more of them and also a way to function better during the busy times. My One Word - Present does help. I have really been using it to stay in the moment.

That is my list for now though there is always so much more to be thankful for!

"Abundance is not something we acquire. It is something we tune into" ~ Wayne Dyer

xoxox, deb

6 Years Ago - Part 2

2011-03-17T23:18:00.000-04:00

I don't want you to think the last 5.5 years have been easy....I have had many ups and downs with my health as well as things that affected my health. Just read back in the archives and you will see that pretty clearly. But the fact I am here, feeling as I do, is pretty awesome!

I have done a lot of things to try and stay on top of my health since then. I workout 6 days a week including using weights 3 of the days. I work at maintaining my weight. Yes, it does take work for me! But there is no doubt my healthy weight helps my lungs fight infections. I take more antibiotics than I used to and when I need to, I do an inhaled drug that tastes gross, smells gross and requires over an hour of my day. But....it is what must be done.

When I look at all I do everyday, especially during an infection, I am somewhat impressed. I think the key to being able to do it is that there has always been some level of required therapy my whole life, more so as an adult. I also think the fact that the new things in the past 6 years did not get added all at once. As each new treatment has been added for me it has always been a "Let's just see how this works" kind of attitude. Lucky for me, they have all worked for the most part. I can only imagine what it would be like to go from having no health regime to being diagnosed with a disease and needing to do 2-4 hours of medical stuff a day. It would be a HUGE adjustment.

That is another reason not to rush into transplant. I will have a whole new UNKNOWN regime of pills and things that will not be familiar. At least all I deal with right now ifs familiar.

Another thing I am finally able to do much more often than before is to stay present in today. I do not get too caught up in worrying about what my dr. in Pittsburgh will say at our next visit. I do not get too anxious if I have a fever and go on IV's. I do not get too hung up how much longer can I wait to be listed. I mean, if I can make it six years from where I was, who knows...maybe I can wait another 6 years! There are benefits to waiting by the way. I am a high-risk patient so we do want to wait as long as possible while I remain stable and have a good quality of life.

There are things I can not do anymore. That has also come gradually. But there is still a lot I can do so I try to focus on those things and enjoy what I can. Shopping at Target is still fun even when I use a scooter!

One challenge of being in this limbo is seeing so many other people with CF who need a transplant, or who already received one, follow such a different path than me. It is almost impossible to find two CF/transplant stores that are even remotely the same! When I need to ground myself I look back to that clinic day in February 2005 and remind myself how far I have come. And I can only hope my long journey to transplant leads to an even longer journey after transplant!

I know this post has been all over the place...I hope it makes sense. This is what it is like inside my head most days, lol! What it all boils down to is here I am 6 years since that day I thought I was ready for a transplant and I am still doing ok.

I can definitely live with that!
xoxox, deb

6 Years Ago...Part 1

2011-03-08T13:53:00.000-05:00

February 4, 2005 was the first time I thought my doctor was going to say it was time to look into transplant.

Backstory: I had been sick for the past 3 months; It all started with an infection I got right before going to Mexico in October 2004. I took oral antibiotics with me but spiked a few fevers while I was there. When I got home I did another round of oral antibiotics. Then I ended up in the hospital on November 26, 2004. From that day until February 4, 2005 I was on IV antibiotics for 51 out of 72 days and in the hospital for half of that.

My PFT's dropped from the low 60's to the high 20's.

I lost 20 pounds.

I kept spiking fevers.

Louie had to carry me up the steps some nights.

I started using Oxygen at night and sometimes during the day.

I think you get the point. Things changed. Fast!

Back to February 4, 2005. I had an appt. to see my CF doctor because I was not feeling well, AGAIN. Knowing what I did from other friends disease progression and having went through the last 3 months I was sure at this appt. she would say it was time to look into transplant. Before the appointment I dropped off Max at the vet for knee surgery. It was so hard to leave him there. It was a big deal and he was my baby. I was bawling before I got into the car. Then I get to my appt. and I start crying again. But my doctor surprised me by saying it was NOT time for transplant. I couldn't believe she was saying that. I knew how I felt. I was scared. I didn't want to feel like this forever and I didn't want to get worse. My doctor told me she knew of other patients who functioned at my PFT level for over 10 years. I could not fathom that. So I left that day trying to trust what my doctor was saying. But I was still scared.

Those next 3 months were rough too. Max and I tried to recover together (the photo above is from a few days after his surgery). It was in June that year that I had the massive hemoptysis. After that huge event, I began to stabilize just a bit...enough to give me some hope. However Louie was still doing everything around the house at this point as well as work 40 plus hours a week. All I did was eat, sleep and do my treatments. I had no energy for anything else.

So, here I am 6 years from that time. I would have NEVER, EVER in a million years believed that was possible. So, now the question is why have I been able to stay relatively stable the past six years? How did I pull that off? How much longer can I continue to stay in this holding pattern? Am I happy in this space? It is a lot to think about.

So, that is what I am doing...Part 2 coming next week ;-)!

xoxox, deb

Thankful Thursdays - Fundraising

2011-03-04T09:08:00.000-05:00

(I know this is posting on Friday!)
I have posted here before about the generosity of so many people who have helped me with raising funds for my transplant expenses. While it is still overwhelming to be the "cause", I am ALWAYS appreciative of every fundraiser.

Our most recent one was a Peace, Love, Lungs Chili Cook Off that my friend Maureen organized along with help from quite a few people.
There were all the volunteers who set up, ran the raffle, the 50/50 and ran to the store to get things we ran out of. Then there were the 12 competitors who brought their best chili to share with the crowd.

Then there were all the people who attended. Wow. We pre-sold tickets but then were surprised as we had walk-in after walk-in....we are not sure of the total headcount but we are estimating around 150 people total! And let me tell you, they were very generous. Between the ticket sales, the brown bag raffle and 50/50's we raised $4500 for my fund! Simply AMAZING!

Competitor Kim

Competitors Vera and Louie

Competitor Joel

Competitor Amy

Competitor Steve with his wife Leslie

Competitors Jill, Dan and Don with Zach

Maureen and Me

Me with all 12 competitors

My WW Ladies - heather, Amy and Carol

2nd place - Steve, 1st place - Louie, 3rd place - Tony

As you can see we had a lot of fun and the event was a HUGE success. I am so, so Thankful to Maureen and everyone else involved in the event. I never take for granted how much people have done. I will never feel I have thanked people enough. At least I have Thankful Thursdays to help me with that!

xoxox, deb

P.S. Thankful Thursdays are inspired by Ronnie and Mandi at www.runsickboy run.com

Blog Posts in the Next 10 days

2011-02-28T16:25:00.000-05:00

Here is a list of blog topics I intend to cover in the next 10 days:

~Chili Cook-Off Recap

~Reflecting on the past 6 years (already mostly written, just needs a polish)

~List #9 - Contents to be determined

And just to put a little extra pressure on myself......

~CF vs. Grey's Anatomy - What is the truth (This requires homework because I still have to watch the episode online, I just heard about it from other people!)

Here's hoping I accomplish my goal!

xoxox, deb

Post 360

2011-02-25T10:19:00.000-05:00

I am doing fine....just been busy with stuff. I thought a quick post was better than no post! The Chili Cook Off is tomorrow so today I am wrapping baskets and finalizing stuff, picking up a few last minute things.

I never really covered the latest in my visit to Pittsburgh. We cancelled our first appt. in Feb. then cancelled the second one due to snow. I emailed the doctor and he agreed that as long as I am stable, which I am, I can wait until April when the weather is better. So that is the plan!

I am finished taking the study drug. I did well on it, haven't been on IV's for 5 months. I have to take a month off for the final part of the study then I may go back on it.

I only have a few more projects on my plate and our 20th annual Women's Weekend, then I plan of getting some fun home and craft projects going. March 16th should be the day, lol!

That's all for now...just a quick check in to say hi and that I am doing ok!
xoxox, deb

List 8 - I Haven't Posted Because I am....

2011-02-15T20:22:00.000-05:00

A procrastinator by nature.
Finishing work on the CF Clinic scrapbooks.
Working on donations for the Chili Cook Off.
A procrastinator by nature.

Hope to post something worthwhile soon. The post is already in my head, just need to make time to get it into blogland.

xoxox, deb

List 7 - Things I am Looking Forward To

2011-02-06T19:45:00.000-05:00

I am far behind in my 40 Lists while I am 40...I think it may just be 40 Lists in my 40's! Anyway, here is number 7...some things I am looking forward to.

Drug Study being over - This has been a full year, the longest study I have participated in. It has not been to invasive, the blood draws have been the worst. I have felt pretty good on the drug the last 6 months. I am definitely going to take a month off just to have a break from the 3 extra treatments a day plus the extra cleaning required for the special nebulizer. I suspect this drug will be a pat of my regular regime but for now I will enjoy the month off!
Getting Crafty & Scrapbooking - I know I keep saying this, but it is getting closer and closer. By the beginning of March I should be able to really focus on crafts. I need to spend time catching up on my album for the One Little Word class and then I am going to work on my album for Women's weekend, which brings me to number 3...
Women's Weekend 20 - This is the weekend retreat I have been going to for 20 years. It is an integral part of my life and the friendships I have as a result of it have carried me through a lot of hard times. There is a great balance of happy, endorphin-releasing activities as well as lots of crying. (And food. And wine.) It really fills me up spiritually and always makes me want to be a better person.
Spring - I miss the green grass. I am ready for it to be nice enough for me to sit on the patio and read a magazine. I am ready for the windows to be open and smell fresh air going through the house.
Dog-Sitting - Our next visiting dog will be here in a couple of weeks and she is staying a whole week! It is Molly, she has been here before. She was the one who got out under the fence and THEN crawled back in under the fence. I really appreciate she didn't make me run after her!

So, what are YOU looking forward to?!
xoxox, deb

Thankful Thursdays

2011-02-03T22:37:00.000-05:00

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at

Run, Sickboy, Run.

Today is a really easy one....I am thankful for all the people who have had fundraisers for me in the past two years. Thanks to them, I have almost $20,000 for transplant expenses!! Our goal is $50,000. I want to start by mentioning the two that are happening this month.

First, my cousin Terri is running a beer tent for me at Winterblast in Detroit. She is coordinating the volunteers for all 3 days as well as working a lot of the hours. She has done this for me 3 other times and will be doing 2 more this year! I cannot put into words how THANKFUL I am for all she has done. Her heart and giving know no bounds!

Second, I am THANKFUL for my friend Maureen who is organizing a Chili Cookoff on February 26th.

Maureen is doing tons of work for this event along with lots of help from her husband Joel, and my friends Heather and Amy from Women's Weekend. It is going to be a really fun event and I am hoping it gets us closer to the halfway mark of $25,000!

Even after two years of the fundraisers, I am still humbled, and honestly shocked, that there are so many people who want to help me. The fundraising has spread beyond my circle and has rippled out into other people's circles. Friends of friends, friends' moms, people who work with a friend....they are all wanting to help my cause. How do you begin to thank people who don't know you for giving of their time and money to help someone they don't know?

I try and pay it forward whenever I can but I know it does not compare to what people have done for me. In keeping up with my "One Little Word" (see sidebar) I just try to stay present and be thankful for the present that so many have given me. In a way it is getting me ready for the day when I get an amazing second chance at breathing in deeply. What a present that will be! But for today, I am in this moment and thankful for the family and friends who have done, and continue to do, so much so that when the time comes, money will not be something we have to worry about. That gift is priceless.

And for that I am thankful.
xoxox, deb

Thankful Thursdays

2011-01-27T19:22:00.000-05:00

Today I am thankful for the good parts of the internet.

I love being able to connect with so many people with CF and not have to worry about cross infection issues.

I love being able to look up what was the 4th episode in the 2nd season of M*A*S*H.

I love that I have reconnected with old friends on Facebook as well as gotten to know acquaintances better.

I love being able to shop for everything from my drugs, to craft supplies to toilet paper and it is all delivered right to my door.

I am thankful for ALL the blogs I read. From CF to decorating, organizing to inspirational, photography to humor, I have found a blog on just about any topic.

I love the challenge of a good internet search and finding exactly what I was looking for!

I love sharing the transplant experience with so many other people, it is so nice to know of all the others that have been through this already and the wisdom they share is priceless.

I am thankful someone created this technology that, for the most part, serves a positive purpose. :-)
xoxox, deb

List 6 - 10 Photos I like from 2010 (Plus 2 extra!)

2011-01-26T13:38:00.000-05:00

In no particular order, here are some of my favorite pics from 2010....

New Year's Eve

Christmas with my family, I love how the kids are all doing their own thing!

First time we babysat Hope....isn't she cute?!

My mom's star on the ceiling at Chalfonte House. I am so glad she went to Chalfonte and could experience what it had to offer.

WW 19, showing off our bras!

Very typical pose for most of our pics together :-)

Carole King and James Taylor.....ahhhhh. I still have such wonderful memories of that concert. It is in my top 3 concerts of all time....might even be number 1, please don't tell BNL!

My 40th birthday made PERFECT with balloons from the BFF and delivered by Rick and Sue!

A wonderful day with some very special friends with an amazing gift that truly left me speechless.

Eric's going away party. We are so proud of him but we sure do miss him!

Graffiti Alley with Pam, one of my favorite pics of us EVER!

Our photo shoot with Sara, so, so glad we did this. I think it will be a regular thing!

Hope you enjoyed this list, I loved looking through all my pics. :-)

xoxox, deb

Thankful Thursdays

2011-01-20T23:19:00.001-05:00

Thanks to Run, Sickboy, Run for keeping this feature going....I missed a week here and there but I am back this week with a list!

This week I am thankful our health insurance. We have to do a whole bunch of new paperwork this year and they are starting a new program where they will call me every 3 months to check in. While these things annoy me, I remember how lucky I am to have the insurance to begin with. The money I save just in prescriptions is well over $5,000 a month. Not to mention they are going to cover my transplant. So as I jump through the necessary hoops....I am thankful!

I am thankful for feeling better. I did not feel good last weekend and I have been working hard to avoid needing IV's. So far, so good!

I am thankful for making some progress in getting rid of some clutter around the house. I really want to reduce the amount of crap we have but it can be hard to as I tend to get tired quickly. But I have been taking it slow and steady and I am planning to have a donation ready for the Salvation Army in two weeks. Baby steps!

I am thankful for little things too, like fun scrapbook paper, honey mustard pretzels, caramel filled cupcakes, Mumford and Sons cd, tiaras from the dollar store, pomegranate Scentsy cubes, and fleece pajama pants.

"Who does not thank for little will not thank for much" ~Estonian Proverb

xoxox, deb

List 5 - Books I Read in 2010

2011-01-14T11:18:00.001-05:00

I have written before about the book club I am in, BBC. We just celebrated our 10th year! Since I am way behind on my "40 Lists in my 40th year" I thought this was a good one. So here are the books BBC read in 2010, in no particular order, with my review after each one.

The Help was a wonderful book with very well developed characters. There were lots of laugh out loud moments as well as reminders of what life was like in the south years ago. This will make a great movie and it is already being filmed! I give it 4.6 out of 5.

Winkie is, by far, one of the weirdest books our book club has ever read and it won the Worst Book of 10 years award! I give it a 1.0 simply because it has given us a few great one-liners to use forever!

I am not usually into murder/mystery books but I did enjoy this book for the most part. The first 50 pages and last 50 pages were the toughest to read. But it had very interesting characters. I think I am the only one in the book club who did not read the next 2 books in the series. I give it a 3.4.

I love Kris Radish books, my most favorite book of hers is "The Elegant Gathering of the White Snows". This book was almost as good as that. It is very focused on the bonds between women and how we help carry each other through the tough times and then celebrate our victories together. You may need a tissue or two. I give it 4.4.

I picked this book. It has mild (really mild!) resemblances to Wicked which I really liked and then other elements that were unusual that made me love it! I give it a 4.

As with a few other of Jodi's books, I liked it...until the end. Then I wanted to throw it across the room! Because of that I can only give it a 3.2.

I had a really hard time getting into this book, I think more because of what was going on in my life at the time that the quality of the book. I do recall most of the other members did like it. I am not sure I even finished it so I won't give it a rating.

This was a surprise hit for me. I didn't really expect much from it and I ended up loving it. It was one of my top picks for the year. It was a very good story, interesting characters and I liked the ending. I give it a 4.4

The Sugar Queen was interesting. Lots of unique characters and the storyline had some "mystical" elements that made it a really fun read and it surprised me, in a good way, with a story twist. I love that. I give it 3.9.

This book had a lot to live up to because it is by the same author of one of my all-time favorite books (see below). Unfortunately, it fell short for me. The story had potential but it just ended up being silly. I was bummed because I was really hoping for so much more. I give it a 3.0.

This book also was a disappointment. It was a nice story but I never really felt like I cared too much about the main character. I like other books by this author much better than this one. I give it a 3.0.

Just in case you are wondering what books I think are 5 out of 5, here are 3 books that are on my Top Book List of All Time and I have reread every single one, more than once!

I hope I have piqued your reading interest with at least one of these books. I don't know how to make an image a clickable link or I would have so you could click right to Amazon and buy it, lol! If you know how to do that, please let me know in the comments section. Thanks and Happy Reading!
xoxox, deb

One Little Word

2011-01-07T15:31:00.000-05:00

I am really trying to get back to some version of scrapbooking and crafting this year. It is an outlet that I have definitely been ignoring. One of the things I am doing to help motivate me is taking a class online. It is called One Little Word. This not a new concept but Ali Edwards has really helped it take off in the scrapbooking world. The concept is about picking one word to be your mantra or guide throughout the year. I have actually chosen a word for the past few years but this is the first time for the class. I like that I will be reminded of it every week, in case I forget, and that will be some structure to really focus on it and bring it to life. I am very excited because I see it as a wonderful combination of nurturing my creative, crafty side as well as my spiritual side.

It did not take me long to pick my word. It is Present. And I think it will include the noun, verb and adjective form of the word. There is a lot of possibilities with such a simple word. Two of the main focuses will be staying in the moment, staying present and all continuing to recognize the presents/gifts in my life. I am looking forward to getting started on it next week and I will share some of it as I go along.

So, if you had to pick One Little Word for 2011, what would it be and why?
xoxox, deb
P.S. Happy New Year!

Just wanted to say...

2010-12-19T19:26:00.001-05:00

xoxox, deb

Thankful Thursdays

2010-12-16T13:55:00.000-05:00

Thanks to Ronnie and Mandi at Run, Sickboy, Run I am doing another Thankful Thursday. Today's list is inspired by a post I wrote last week about being in limbo, the place where I am sick enough for CF to impact my everyday life but not sick enough to be listed for my transplant yet. In an effort to focus on why this is good, here are reasons I am Thankful to not be on the list yet.

1. Everyday that I have not been on the list allows my team of doctors to learn something new that will benefit me and my transplant experience.

2. I am given another day to workout and get even stronger because that will be a key component in my recovery.

3. I am offered the opportunity each day to see what a gift I am being given, both by waiting and also by having the opportunity to be transplanted.

4. I am able to work on how I feel about the whole situation so that when the time comes I am as mentally strong as I can be!

5. I have time to decide where we will live in Pittsburgh, who will take care of our house, etc. and that gives the controlling part of me some comfort. :-)

6. I have another day of the very familiar CF stuff to deal. After transplant it will all be new, unknown stuff, so for now boring and familiar are good!

I am sure there are more but this is a good start!
xoxox, deb

Photo Crazy

2010-12-15T17:11:00.001-05:00

In the interest of starting to post more, here are some long-ago promised pics that I never shared. I know you have been waiting for these for over a year now haven't you?!

In THIS POST from my 39th birthday I talked about a great cake Louie had commissioned for me (He was inspired by the cake in the video I talked about HERE) but at the time my camera wasn't uploading to my computer. Then I got a new computer and forgot. THEN, I remembered but couldn't find the pics. I just found them! (See Dec. 9th's post!) So, are some photos, finally of the cake, hope you are not offended by the F Bomb!

I loved the cake because of the meaning behind it, that it was a BNL reference, that it really did sum up 2008 but most of all because Louie thought of it and kept it a secret for 8 months! And it was yummy too :-)

Some other photos I had mentioned but never shared were from our trip to Niagara Falls. These are much more self explanatory than the cake ones, so here ya go!

Mandatory voyage on the Maid of the Mist. It was so fun!! And wet! I loved every second of it :-)

"I want to be Big"

One of my favorite places in the world!

This is a little embarrassing but in the interest of sending you to good food, I must share. These pics are from a restaurant called Ristorante Giardino in Niagara-on-the-Lake.

It was the best food of the trip without a doubt. As you can see in the first pick I was really enjoying our chocolate fondue dessert. Well, if you look closely in the second picture, you can see just how much I was enjoying. Yes, folks, that is chocolate on my oxygen tubing, lol!! It was worth looking like a dork. We highly recommend the food there!

I think those are the only pictures I never got around to sharing. Now, that I have the photos on the laptop it seems much easier to share as I go. I do want to start getting some of them printed, that is the drawback to digital, we never get around to printing them!
That's all for today, just a little fun to share:-)
xoxox, deb
P.S. I just realized I never shared the AFTER pics from my office remodel. I will do that as soon as I straighten up in there enough to take pics!

Thankful Thursdays

2010-12-09T22:44:00.000-05:00

I have mentioned that I read a lot of blogs including many CF related. Today I read a post about Thankful Thursdays at the blog Run, Sickboy, Run and I decided to join in! I recently did a post about what I was Thankful For but I figure there is ALWAYS more to be thankful for right?! So this list is the little things that make me happy.

I have been looking for some particular photos for over a week. I looked through every folder on this computer, every folder on our old computer and 3 memory cards. I was really disappointed. Well, yesterday I came across another memory card in a very strange place and sure enough...the photos I was looking for were on it!
I am thankful for my mantel. It is all decorated for Christmas. I love the white lights with the snowmen and glass decorations. I could look at it for hours.
I am really enjoying the candles I unpacked from the Christmas boxes. Besides the smell it is nice to have the flickering candlelight to make the cold, dark nights a little more enjoyable.
New music on my iPod while I work out is truly wonderful! I love rediscovering obscure songs from years ago and being able to load them up in a matter of minutes. I love that I can hear The Beatles, Florence and the Machine and Jimmy Buffet all in one workout :-)
I am thankful for feeling up to and having the time to be more interactive with the blogs I read (like Ronnie and Mandi's) by commenting and sharing information. Technology can be a great thing!

Thanks for the idea Ronnie, it is always good to have an Attitude of Gratitude!

xoxo, deb

Tilt-A-Whirl of Life

2010-12-08T22:16:00.000-05:00

So, I am feeling good. Like really good. I have done more errands and stuff around the house in the past two weeks than I have in the past 6 months. And I haven't had one nap. Of course, this is great news! But, what makes it even better is that the month and half before that sucked. Physically and mentally. It was like when you are on a Tilt-A-Whirl and just when you think you are going to go one way, you go the other way and slam up against the metal side and then begin spinning crazily and you can't even enjoy it. Well, now it feels like we are spinning around but in that fun way where you just can't help but laugh and almost pee your pants. Both situations do require you to hold on for dear life, which I continue to do :-)

So, you may be wondering why the spinning? I made no mention of it on the blog. Honestly, I was hiding. Louie and I were just keeping it between us and hoping we could figure it out. I tend to do that when there is a sudden change in this crazy life of ours. I need to process it. This however, was a bit bigger than normal. See even now I am talking somewhat cryptically about it. So, with apologies to my family and closest friends, who had no idea this was going on, I share it here now with the general internet. :-)

About 6 weeks ago it seemed both my docs wanted me to go on the transplant list in January. While on one hand, this was not a total surprise (I know I am getting a transplant!), it was a big deal when I thought they both were definitely in agreement. So Louie and I had to work through that together and get our bearings before we put it out to the world. There were lots of talks, tears and WTF's. Plus I didn't feel good, hadn't felt good since the summer. I was short of breath and taking an hour and a half nap was the norm. So, what my doctors were telling me made sense. But still. Big stuff to process.

Then through a flurry of calls, emails and discussions with my docs and a small improvement in how I felt, it was decided I was NOT ready to be listed yet. This was AFTER Louie and I had gotten on board and were in the planning stages of how to get ready. So there was some relief but also, in a weird way, there was frustration. Because that means we are back to waiting. We are back in limbo. We remain on the Tilt-A-Whirl. So we had to take a few steps back and see the big picture. We reviewed what the docs said. We agree with them. We are grateful. And since I have been feeling good we feel very comfortable with it all.

I am where I was this summer and have been for a few years now. Waiting to wait. Working hard to stay healthy and stay strong. Feeling grateful at the opportunity that lies ahead of me. And mostly, trying not to wonder "When?".

I hope this helps some of you understand how this process has been for Louie and I over the years. It is full of ups and downs, highs and lows, calm and chaos. But when I can take the extra time to close my eyes and relax into it all I know this is leading me to something more amazing. I know our patience (and frustration) will be rewarded. I look forward to the part of the ride where we laugh and pee our pants!
xoxox, deb

Revelation

2010-12-08T11:55:00.000-05:00

I am writing that long post I promised yesterday...as I am doing so I realized something. I do not post enough. It is hard to capture the full effect of the day-to-day stuff around here when I only write every week or two. I mean things change every few days and sometimes every few hours! I know I really want this to be an HONEST look at my life right now. So I know I need to share more. I need to stop waiting for things to balance out, to get better. It is all important. It is all real. So consider yourself warned....more posting is on its way!
xoxo, deb

Coming soon...

2010-12-07T17:15:00.001-05:00

New post in the next 24 hours :-)
xoxox, deb

List 4 - Thankful for....

2010-11-24T19:35:00.000-05:00

This is going to such a predictable list but I feel I need to still put it out there. I have many moments of frustration throughout the day but when I am tucked into bed with Louie sleeping by my side, I always fall asleep to the feeling of gratitude. I am now working on starting my day that way and maintaining the momentum. So without further ado, here are the obvious things I am thankful for and a few not-so-obvious things too!

Louie
Lungs that continue to work
The possibility of new lungs out there waiting for me
Generous people from those who have attended fundaraisers to my someday donor and their family...
My family and dear friends (This could be its own list!)
Two awesome doctors who absolutely want the best for me and have gone above and beyond to make sure I get it.
The positive feelings about transplant that are more frequent than the negative ones.
The ability to workout and keep my body as strong as possible.
Songs that speak to my soul and moments in music that move me...most recently the scene in GLEE with Kurt and Finn at their parents wedding and a new song called "How Not to Behave" by Christine Kane.
Finishing up another obligation today....only a few left!
For turning 40...going to be quite a year. :-)
Good health insurance
Other people with CF who have so willingly shared their stories and experiences so that I can benefit from it.
All the love I have experienced and continue to have in my life. It truly is my life source and what I feel makes life worth living.

I am really looking forward to this holiday season, spending time with those I love the most and just being together.

Happy Thanksgiving!

xoxox, deb

Some Fun Stuff and Pitts Update

2010-11-17T14:33:00.000-05:00

For someone who does not work outside the home, I sure do feel busy all the time! I know I spend a lot of time on treatments and working out but I also seem to always have something else going on, some project, some task. That is a good thing I suppose. I have been finishing up some various loose ends and I have some other projects lined up. Things that help me focus more on the positive mental state I want to be when I do go for a transplant. I am excited for those projects to start! I posted on FB asking for favorite motivational quotes for one of the projects. I plan to create a mixed media collage book full of positive thoughts and quotes to read throughout the days, weeks, months and years ahead. If you are not on FB and have a quote you would like to share, please do so here. I would love to feature you in my book. Hmmm, now I think it needs a cool name...

Another cool thing in the past few weeks was Louie and I had our photos taken by Sara Lynn Gawal Photography. I am so happy with the pics...here are just a few:

As for our Pittsburgh visit, we are in negotiations to go sometime in January. I see my doctor on Monday for my drug study visit and we will discuss it more then. I would prefer not to go in the middle of winter but we shall see!

xoxox, deb

Finally, the Scoop on the Spoon Theory

2010-11-07T11:22:00.001-05:00

I always wonder how people can decide how sick you are just by looking at you. One of the more difficult aspects of dealing with CF for me is that I don’t look sick. Well, maybe the oxygen gives it away to a degree, but if I shower, get dressed and put on makeup I am kind of cute! For the most part my disability is on the inside in those little nooks and crannies of my lungs where no one can see them. As a result of this I think a lot of people don’t realize the extent limitations. I mean if I look ok on the outside then why can’t I carry the groceries in from the car, right? Why can’t I go visit my friend who has 2 sick kids? Other people with CF know why. But this is hard to explain to others. It is hard for them to understand why I can’t go out with my friends one evening and then get up early the next day to go out to breakfast…usually it has to be one or the other.

Luckily I found an amazing article written by Christine Miserandino (www.youdontlooksick.com) called "The Spoon Theory". You can read it HERE. Now, you will notice Christine has Lupus, not CF, but I have found this article to be superb in explaining the negotiating that I, and others with chronic illness, have to day-to-day.

After I read this article I said out loud “Yes!” Finally an analogy to help people understand what day-to-day life is like. I think many people with CF can relate to this. Especially as our disease progresses and there is less and less energy, therefore less spoons, to be had in a day. It is a way to explain why I have to pick and choose what I do in a given day. I am always looking a few days, and even weeks, ahead when I make plans. If I have 2 busy days in a row I will be sure to take the next one off. If I have plans for the evening I will not do too much during the day. I do not want to use all spoons before I even leave the house.

Doing treatments, eating, showering, getting dressed, running errands, going to the doctor, these all take away spoons from my pile. Yes, they are all necessary but they still require a spoon. Now there are days when I use up all my spoons and even borrow some from the next day but I usually plan ahead to do that and then plan to recover from it over a few days time. And sometimes you just have to use all your spoons for something silly. Life is too short to not have fun! Just for the record, climbing 100 steps, without oxygen, to be able to go down a water slide with my niece and nephews was worth every spoon. So much so, that I did it twice!

I hope this sheds a little light onto a subject that can be hard to put into words. Having read this article has made a world of difference for me. I love myself a good analogy so if I can think it terms of spoons instead of just being sick, it helps me make some choices that are better for me in the long run. I hope it has helped you to better understand the issues anyone with a chronic illness faces too. :-)

xoxox, deb

Post #340

2010-10-25T12:46:00.000-04:00

A peek into my thought process about blogging...

~ "I am feeling really good today, I should blog the good news" then I get distracted....and I think I will do it tomorrow, and then I don't feel good the next day.

~ "Ugh, I don't feel good today, I should blog about it" and then I get lazy...and I think I will wait until I feel good again.

~ "Yay Pam is coming to town, I must blog about it" then I don't.....so I think I will do it once she gets here.

~ "Pam is here now, I *really* should blog it" then I don't.....and I think now I should wait until she leaves and I can recount the whole visit.

Can you see how I am my own worst enemy?!

Since I finished IV's at the end of September, I still haven't felt GREAT. I feel ok. Still more short of breath than usual and tired. I take an hour to 90 minute nap everyday. I am holding steady with everything else but it has been frustrating to not bounce back completely to my normal. And to not know why exactly. Is it because my iron is low? Is it the study drug? Is this my new normal? So I try to find the balance between figuring it out and not obsessing. Yeah...haven't found that balance yet!

In the next week we will decide if I need to go to Pittsburgh in November or February. Trying not to obsess over THAT either. Patience is needed. Time must be bided. It is a real challenge to stay in that mind set but I do work at it everyday. Some days are just more successful than others. If I blogged as often as I changed mindsets you would all get dizzy. :-)

Just found a good quote that I will have to read everyday...
Patience is also a form of action. ~Auguste Rodin
Going to go be patient today.....
xoxox, deb

Pam and me at Graffiti Alley in Ann Arbor

Exciting.....

2010-10-02T11:30:00.002-04:00

I have decided to change the name of my blog. I wanted a name that was more reflective of the focus of the blog and I also wanted an easier website address so I have created my own domain name so you do not have to worry about blogspot in my address anymore. So, without further ado, and I do not think any explanation is needed, my new blog name is:
http://www.peacelovelungs.com

Please update your bookmarks and links accordingly. Blogger claims they will redirect people in the future and I am hoping that is true!
I am working on adding pages too, including one where you can order the reusable tote bags and use a credit card! Lots more updating in the near future I hope!
Thanks so much for stopping by, hope you enjoy the new version :-)
xoxox, deb

List 3: To Do List Post Transplant

2010-09-21T19:21:00.001-04:00

This post is inspired by THIS post, which was inspired by THIS post.....
As I sit here connected to oxygen, an IV and a heart monitor, it seems a great time to look forward. This post is about the things I am looking forward to doing after transplant. For a long time I fought using the phrase "After transplant I am going to....". I was worried that meant I was giving up on now. However, in recent months I have found those words passing my lips more and more. I am sure that is due to a lot of things....things which are probably too deep and yet rather obvious so we will skip them for now.

Instead, inspired by the two blog posts above I want a list to look back on. A list to remind me of what I am thinking of TODAY. A list to see just how far those new lungs take me. So without much thought, just from my heart, here is my To Do List post transplant...

1. Go to Fiji with Louie
2. Get a new puppy
3. Walk from my basement to my bedroom without stopping. This might even be better if I jog!
4. Dance until I am really, really, sweaty!
5. Go shopping at Target and not think twice about where I park the car. Maybe even skip getting a cart and just carry everything in my arms.
6. Have a champagne toast with Bob the delivery guy when he comes to pick up my o2 concentrator.
7. Stay out at a bar with friends until the bar actually closes
8. Pay It Forward. Every day. For the rest of my life.
9. Successfully play Hide n Seek in the house
10. Go on a trip with one bag and one bag only!
11. Sing along with the RENT CD from beginning to end
12. Make Craig proud.....ask me in person about this one ;-)
13. Run. Anywhere. Everywhere. 1 mile. 12 miles. Alone. With a crowd. Doesn't matter. Just Run.

You are probably getting the point. The purpose of this isn't to be sad. It isn't for you to feel sorry for me. The purpose of this is so I can come back one day and check each one of these things off the list. Make NO mistake, I am very grateful for all that my lungs allow me to do right now day-to-day. I also believe in the power of visualizing myself doing the things above. I see now that I am in training for marathon of sorts. This has not been a sprint and it won't ever be. It will always be about the long range goal. And this list is about the things I WILL do as I walk, and eventually run, towards that goal. I am so glad to have all of you along for the ride!
xoxox, deb

More Drugs Please...(And the Pittsburgh Report)

2010-09-15T00:19:00.000-04:00

Well, I did 10 days of IV's and had 7 days off and here I am, back on IV's. I started running some temps again over the weekend as well as more shortness of breath. So, in the interest of keeping things in check, we didn't waste any time and back on the IV's I went. I will do them for another 10 days or so, depending on how I feel. I also am doing a 4 day steroid burst, something I usually don't do. That should help reduce the inflammation and help the drugs get in there an dod their job.

So, I am not quite ready to tackle any of the projects I wanted. But, I figured I could blog :-) So the drugs are dripping away and I am typing away.

It is a bit frustrating to be back on IV's so soon. Going on them is always tough. There is always concern that they won't work. And that concern is raised when they don't work and more IV's are needed.

This is all following Pittsburgh which went ok, not great, but ok. In Pittsburgh my pft's were down to 26%, they were 31% in February. I did my 6 minute walk. I walked a great distance, 1450 feet. However, my oxygen saturation was in the low 80's most of the time, while on 4 liters of O2. We talked with the doctor for a while and revisited how to live in the gray (or is it grey) area I am in. I am not *that* sick. Really, I know it sounds funny to say that but it is true. If I was unable to workout or leave the house, if I was IV's every month (well, I mean BEFORE this month!), if I needed more oxygen.....if, if, if, then it would be easier to say it's time. But, I am still relatively stable. The biggest changes I have had are in what I see as quality of life issues. There is no test to measure that. So, the appointment ended with us agreeing that I would start IV's if my pft's weren't up in a week and we would see how I did on the real drug in the drug study. Then, depending on my numbers, I will either go back in November of February.

So the visit wasn't exactly what we had hoped for and now, to be on IV's...again....well, it is annoying, to say the least. But, I do have to say, it could be worse. The fevers have been low grade and my cough hasn't really changed. So I know this is a manageable infection. Just gotta keep working at it. SO I have cleared my schedule, even more that I already had, and am trying to just do what I can every day to get better. Eating, resting, drinking water, exercising. All the usual stuff. And I am trying not to get ahead of myself and what could be.

The IV bag is almost empty and I must go get some rest, the next dose will be ready to go at 7:30am. So I am going to do what I can and just take the next step. And then the one after that, and so on, and so on...(cue the shampoo commercial!)
xoxox, deb
P.S. I used to over use the exclamation point...I think I may have moved on to comma abuse. Sorry about that!

Things to Consider Blogging About Soon....

2010-09-06T16:31:00.000-04:00

Just finishing up a 10 day course of IV's and that is always a time I like to regroup, get organized and back on track and that includes my blogging. Here are some ideas (not promises) about what might be appearing here on the blog soon...

Our visit to Pittsburgh
A review of the Pam Present Palooza
Things I have been thinking about.....
Spoons.....have I blogged about this yet? I can never remember!
Missing people....as in those who are not here, not just people I can't find.
Something inspiring
Something funny
Something thought provoking.....
Upcoming projects
A list of things to do with Pam once she and Lar move back to the USA!!
A timeline of when I might actually blog about the list above....

Guess I better go infuse that last drug because it looks like I got a lot of things to do!

xoxox, deb

List 2 of 40 Lists

2010-08-24T16:26:00.000-04:00

Things I Learned from Not Watching TV for a Week!

1. Louie is more addicted to TV than I am.
2. Bonfires on a Monday night=Awesome

3. I am more addicted to the internet than I should be.

4. Scrabble brings out the competitiveness in Louie and I.

5. His record of 2 out of 3 games must be defeated but how am I supposed to do that with these letters?!

6. We are very average Scrabble players. Here is the final board.

7. When there is no power, you can't watch TV or go online, now that is a challenge!
8. Sitting and staring at each other makes us laugh.
9. I ask lots more random questions than normal when the TV isn't on. I am not sure Louie liked that.
10. I missed going to the library, I went this past week and got 2 new books, a book to give Pam and 2 books on CD!
11. I really like the lack of noise from the TV.
12.We have a lot of CD's! We listened to more music and Louie started filling up his iPod.
13. Listening to Louie play "I'm a Little Teapot" on the harmonica was enjoyable. REALLY!!
14. We are very thankful for DVR. And, yes, maybe having DVR defeated the whole purpose, but it was still a fun experiment!
xoxox, deb

Getting Back to Normal

2010-08-17T16:24:00.000-04:00

After a week (and then some!) of this:

Now there is this:

After all the hoopla of my birthday and seeing friends and family, this week has been quiet. We are getting back into our routines. Even last week still kind of felt like the Birthdaypalooza was still going on. Today there are still 26 of the 40 balloons up around the house. It is pretty amazing! That must be some really strong helium. I am too afraid to test it out, lol!

This week Louie and I are not watching any TV except for the 24 minutes we do my therapy in the basement and when we are at the gym. So yesterday, the first night we had a great little bonfire. The weather was perfect for it. We had a huge pile of wood that Louie split last week. It had already been seasoned it just needed to be smaller pieces and boy oh boy, did it burn great! We are hoping to go through most of the pile before winter and start building a new pile next year. We can always get wood from our neighbor, he has a lot of connections. :-)

We have some fun plans this weekend and then next week we will be seeing my doctor in Pittsburgh. More on that later.

That's all for today, kind of boring, and I kind of like it. Plus I still have the balloons to look at!

xoxox, deb

The Winner is.....

2010-08-15T18:54:00.000-04:00

I added all the people from Facebook to the list and used a random number generator website to pick the winner. The big winner is....HOLLIE!!

Thank you so much to all of you for playing. You really have no idea how much it means to have so many of you see the value in being an organ donor and walking the walk. It has been a gift to see each new person say they got their red heart!

Even though the contest is over, it is NEVER too late to become a donor. Just visit this post again for the details and why you need to do it again if you just have signed the back of your license.

Thank you so very, very, very much!
xoxox, deb