Merry Christmas!

It's that time again.
Family, friends, baking & cooking.
Shopping, wrapping and decorating.
Eating, gaining and New Years resolutions.
Opening, tearing, smiling, and thanking for blessings.
And when all is said and done, I'm thankful for yet another Christmas to add to my memories.

Merry Christmas to all.
May you and your family have a joyous and fabulous holiday season.

And on that note:
My Dream for CF ~ make CF stand for "Cure Found"

Giving thanks for life

Another Thanksgiving has come and gone. We did the usual holiday fare, cooked a turkey with all the trimmings. We kept it simple this year, without inviting my brothers and their families, it's just too much this year for me to entertain 16 people. So it was just us, Jen and kids, Josh and my Dad. Small and easy. Then Jen, Josh and kiddos hit the road to visit their Dad and spend the night. Our Thanksgiving was cooked, ate, and cleaned up by 3.

When all is said and done, I've reflected quite a bit this year about family, my mortality, my health, and just life. I've always appreciated every year that the Lord has graced upon me. My heart knows I've been kept here for a reason. My heart knows that my longevity is in the Lords hands and no one else. Why am I counted among the new face of CF? A 50 something, Grandma, with grown kids. One thing for sure, I don't know why I have lived this long, when the median age for CF survival was a mere 12-14, when I was diagnosed in 1981. Thanks to new drugs and therapies, the median age has increased to 37.

I belong to several online CF forum boards, blogs, Facebook and chat rooms, and we all seem to know each other in one way or another. Our connections via CF is instant and we become virtual fast friends, even though we are spread throughout the country and in some cases in other countries. Some meet in person, even though our CF centers discourage it because of cross contamination issues. But I still see my friends at clinic or the hospital, keeping our distance, wearing masks and gloves. That is about the extent of my physical interactions with other CFers. I don't take chances as some do.

Our online community know the screen names, who's sick, who's in the hospital and who is not doing well. We are a tight group who know everyone's story, which is all to familiar to all of us. Our journey's are vastly different, but we are on the same boat, battling the same enemy, to the same end destination . . . death.

This year has been especially tough, losing too many CF aquaintances and friends. Some truly shocked me, because either that weren't that far into the disease progression or they went down hill very fast. A few had a major hemoptysis, (bleeding lungs) and literally bled to death.

But I have to say that one brave 26 yo woman has impacted me like no other. A special, sweet, spiritual gal named Courtney Hill from Texas. Her death has literally put me at peace about my own death. Her last days have reinforced my personal feelings that I don't really fear death itself, but what I have to go through to get there. Her last 6 months were sheer torture for her, having failing kidneys, failing lungs, being on a vent for months at a time, being near death, receiving her double lung transplant just in time, and failing kidneys again. After 6 months in the ICU, she cried uncle and said enough. She decided to stop all further treatment and die on her own terms.

Her extremely supportive and spiritual family, stood by her wishes and made her last days joyous, full of love and memories. The Hill Family deserve a gold medal for helping Courtney die in the most peaceful way possible. Her older sister Megan, keep a blog over the last 6 months to update friends and family of Courtney's journey. I've copied and pasted the last 4 days of her blog here. Such a truly, loving inspiration to read, have a box of tissues near by. The whole blog is here: http://courtneylynnhill.wordpress.com/

I pray to God that when my time comes, that the Lord bestows upon me the dignity and grace to have my final exit just as peaceful.

God bless you Courtney, soaking up all that Heaven has to offer.
I know you are at total peace and breathing easy now.

Blog:
It’s her final decision
November 20, 2009 by BigSis Meg
This post comes to you all with great sadness, but at the same time much happiness.  I’m sitting in Court’s ICU room, her residence for the last 6 months minus 1 week at home back in September.  We have backed Courtney’s final decision today to stop any further procedures and medications so that she can go home with the Lord, with our Dad and our Pop Shea, our grandmother Muzzie, Popsy, our cousin Diana, our Marsha, other Cysters and Fibros who have passed on and so many others who love Courtney dearly. 

As I was sitting in Courtney’s hospital room this morning, waiting for Mom and Nanny to arrive, her Dr. Blewitt came in and told me that they were going to have to do the shunt procedure for her to survive this battle. He told me what the procedure was and explained to me the possible side effects and complications that could happen. All of this Courtney was aware of and had already told us that she didn’t want it done. He then turned to Courtney and asked her if she wanted to move forward and she shook her head and mouthed “No, I’m ready to Die”.  We have witnessed the challenging struggle she has gone through her 26 years of life, but mostly the last 6 months. 

They have stopped the Dialysis and all antibiotics she’s been taking, and we are now waiting for the Comfort Team to consult us on how to make this most comfortable for Courtney.  She’s told us that she is not afraid, she’s ready!  We are so proud of her.  She’s so strong!  She has taught us so much and will continue to touch our lives.  As we all sit here with her in her room, we have told her that she’s going to have a big job being a guardian angel and keeping over all the babies up there in heaven.  

I’m so happy for you Court that you will be moving on with your life with God. You have told us about the times when you saw Jesus in your room and Dad was leaning up against him. You’ve told us about the Angels who have come to you. That goes to show that you are an Angel on Earth.  Only one so special and pure like you would have the gift to witness such delight.  I’m so proud of you and have witnessed the strength that will live in me forever. Now you get to go have an Eternal Vacation and go dance in the streets!  You get to go breathe easy and play golf with Dad. You will go walk the beaches with Uncle Jack and Pop.  Just rest for now.
I love you!  We love you!


Holding On
November 21, 2009 by BigSis Meg
The last 12 hours have been comforting. We want to Thank You all from the bottom of our hearts for all of the love and compassion you have shared with us about Courtney.  Thank you for sending your thoughts and prayers. We have shared them all with her and she absolutely adores it. Your comments have kept us warm and like I said…comforted.

Courtney was able to see her nieces and nephews last night and say their goodbye’s. They all talked to her about school, Cub Scouts, Choir and Camryn sang “Jesus Loves Me” to her. Nothing brings a smile to her face like her kids – Kaden, Shaffer, David, Daniel and Camryn. Courtney told them that she’s missed them and she loves them. That’s what they needed and wanted to hear and she loved to hear it back. 

We had over 12 people in her ICU room at one time, all our family. It was like we were all at home with Court sitting around just laughing and talking. Because Court can’t talk back with the trach and on the ventilator, she just loves to hear us all talk around her and laugh. Aunt Joan flew in from NJ and surprised Courtney last night around 11pm and she was so happy!  We all left a little after midnight last night but  Nanny and Aunt Joan stayed with Courtney all night so that she wasn’t alone. Mom returned around 4am and Kelly, Lindsay, Chapin and I returned around 9:30 this morning.  

Dr. Blewitt came in this morning to check on her and he told my Mom that she could hold on for the next couple of days.  Courtney understands that, but she’s ok with that.  You should see how comfortable she is. I believe it was a huge relief to her that we have all supported her decision and she’s so ready. I will keep you all posted as things progress because I know how many people are checking on her.  Please continue to pray for Courtney as I know she’s feeling the Love.



Angels Among Us
November 21, 2009 by BigSis Meg
Thankfully I have brought my laptop down to the hospital to use while Court is in an out of her resting, so I’m able to share this time with you. I just had to do a quick blurb of a story Court just mouthed to us. My Hill side of the family will appreciate it.  Court told us that she had a dream yesterday that our cousin Diana was with her in the hospital room, following her around. 

Court said she was introducing her to everyone in the room. Diana stood behind her while she walked over and sat in a chair.  You see, what’s so cool about this story is that Courtney never really knew our Cousin Diana.  Which would explain the introductory…we knew her but Courtney didn’t. She was in a horrible accident over 20 years ago and passed away. Courtney was just a baby when she passed. She described to us what Diana looked like and that her bright Aqua/Blue eyes stood out.    This is a true testament to Angels Among Us. I know Courtney is on heavy meds right now, but how would she know what Diana looked like.  If you only knew some of the beautiful things Courtney has shared with us.



Quick update
November 21, 2009 by BigSis Meg
We have been blessed to have Court with us one more day. Her vitals dropping just slightly. She had some great visitors today and Alyssa made her day. If you could only see the smile she gave today. Kelly is staying with her overnight.



Making special requests
November 22, 2009 by BigSis Meg
These last couple of days have been so special, and moments I will never forget but one who never forgets is Courtney. She has had some particular moments when she has stared to mouth some stories and remember things that bring back memories. She’s still sharp as a tack. Yesterday afternoon she asked for a slice of supreme pizza, and she got it. She even ate half of a breadstick with marinara sauce.  

Kelly stayed all night with her in her room. This morning I got call from Kelly and Court wanted rice crispy treats and I brought it. She heard Scotty made Chicken-n-Dumplins yesterday and she’s asked him to bring her some. Anything for Court!   Courtney has been good spirits, with lots of smiles, although she’s starting to feel some pain. They’ve turned her morphine up to 7mg and her blood pressure is at 86/58. 
Thank you for your continued love and support.



Sunday night
November 22, 2009 by BigSis Meg
Courtney is hanging with us and as always in good spirits. She’s had a lot of special visitors and has had a busy day. Not a lot of resting so I know she’s tired. Her friend Jennifer just left for the day and currently she has Aunt Joan, Nanny, Aunt Jane and Cousin Laura. Mom will be coming down shortly. I am going to spend the night with Court.  She just ate her third rice crispy treat for the day and I’m sure will be resting soon since they increased her morphine to 8mg in the last 30 min. 
Rest Easy my Lil’ Sis. I love you with all my heart!



I’m Alive, I’m home
November 24, 2009 by BigSis Meg
These last few days with Courtney have been some of the most amazing days of my life and I will never forget them. As most of you know, Courtney has been battling her life with Cystic Fibrosis for 26yrs. Courtney resigned from her battle on Friday the 20th and since that day it was like a huge burden was lifted from her. No more anxiety, no more worries, and no more pain.  

I’ve lost a lot of people in my lifetime, more than most do until they are “older”, but this loss has never been so comforting and so bittersweet. These last few days, Courtney has had lots of smiles. She was able to request food she wanted.   We were all surprised when she asked for Mom’s Chicken Chow Mien yesterday, and when she heard Mom was making it for her she mouthed “YES” and made the motion of pulling the elbow to chest with a fist. So cute! She had so much energy yesterday, moving her arms around and mouthing stories, keeping up with everyone. At one point, she acted as if she was bummed and mouthed that she wished someone had a camera, because she wanted her picture taken with Nanny, Aunt Joan, Aunt Jane and Cousin Laura and her friend Courtney Stevens. Thankfully Aunt Joan did have her camera on her and they were able to take her picture one last time.

Mom spent the night with Court last night and at 8AM this morning Courtney requested that Chaplin Ryan come in.  She said she was ready to go home. Mom thought at the time she wanted to go home in Allen, TX. Courtney threw the sheets off her legs as if she was about to get up out of bed. Mom told her you can’t get up. Courtney mouthed, “Yes I can walk now”. Mom covered her back up and got her comfortable. If you only knew that these last couple of months, Courtney has had no energy and unable to walk because of her muscles and legs deteriorating from being in the hospital bed for so long. She couldn’t even lift her legs to get off the bed.

What I’m about to tell you all, is the purpose Courtney was here. The gift to share this with you all is one of the many reasons God created Courtney. This is the shortened version, there is much more…  Around 9AM this morning with the Chaplin, Mom, and our Brother-in-Law in the room all of a sudden Courtney got wide eyed and started waving her arms in the air and mouthing that she was Alive, and Home. She waved her hand and said “Hi Daddy” to our Dad who passed away over 8 years ago. She was being greeted by all the Angels and loved ones who had passed on before her.  She started running with her legs on the bed, making the running motion with her arms along her side.  

She was saying over and over “I”m Alive, I’m home”  Her legs were coming off the bed, which she hasn’t been able to do the last 2 months.  Lindsay arrived and was able see her waving her arms and praying with the Angels around her.  Lindsay said it was like she was already on the other side and they weren’t even in the room.  Kelly, Nanny, Aunt Joan and I arrived just before 10am and they had just given Court some medication to help her sleep. She slowly started to decline.

She slowly closed her eyes and raised her arm over her eyes as if something was very bright. She took her last few breaths and just like that she was gone. There was no pain, no suffering.  It was a very precious morning. Courtney gained her Angel wings at 10:54am.

Thank you all for following Courtney’s story and giving us the strength to get through this. We’ve had so much support from family and friends and this transition has made it easier on us.
Courtney made some final wishes before she left us.  She has asked us to continue to support her Cysters and Fibros and wants our CF Team Cookie’s Monsters to raise $15,000.  

Anything for you Court! She said she wants to wear jeans and a t-shirt at her viewing. She wants everyone to wear her two favorite colors pink or green to her funeral, no black!

Courtney – it’s no surprise to me that you get to go home just before Thanksgiving.  I’m so happy for you and I’m thankful for the time I had with you. You are home with Dad, Poppy and many others who love  you dearly. You are in no pain! You are running the golden streets.  Have fun and we will see you soon!!!  XOXO
PS, Court said no flowers, donations only.  The link to donate is on the blog.
http://www.cff.org/Great_Strides/MeganThomas5889

We are back . . .

Yep, back to the real world again.

This was a dream trip I had envisioned would happen maybe in another couple years. I couldn't wait for the day to take my grandkids to the magical place that is Walt Disney World. The trip was most definitely waiting near the top of my bucket list. But I also knew that timing was everything. The kids had to be ready to ride and experience everything the World had to offer. Which means growing to at least 44" in height. Aaron more than fit the bill, especially since he has lost his fears and willing to ride just about anything and everything now.

Terry and I love going to WDW and always have a great time, just the 2 of us. The last time we took 'kids' was back in 1996 when our kids were 15 and 16. An age where they did have fun but also didn't really want to vacation with the parents anymore. We also chose the worst time of the year to go, JULY. Ugh the heat and humidity were unbearable which made the trip miserable. We vowed never again to go to Florida in the summer.

So why the change and take the kids now? Our timeshare exchange company, RCi, recently added the Disney World properties on their list of exchange options. In the past we exchanged for condos in the Orlando area and rented a car. But we always wanted to stay 'on property' making use of the Disney perks, all inclusive immersion and extensive transportation. We have priced independent WDW vacations on property but they were expensive with a capital E. We just could not justify spending that much when we could exchange just outside WDW property for $169 a week exchange fee instead of $300+ per night. Big difference. Our timeshare exchange has given us many happy, fun trips to WDW with very little expense.

In March, when I heard about the exchange, I immediately got on the phone to RCi. An agent explained that yes we could exchange to WDW, but there was such a demand that a wait list formed and it could be 2 years to actually get an exchange. Perfect I thought, the kiddos would be just about the right age, I added us the wait list.

Fast forward to June, I get a call from RCi. They had a 1 bd villa at the Wilderness Lodge available in Nov. WOOOO HOOOO, that was our first choice, how could we turn THAT down?!? We accepted and paid our $169 exchange fee for the week. Beats paying the going rate of $425 a night!! Our trip was officially fast tracked. We used frequent flyer miles for airfare, and bought the WDW tickets through the trusty wholesaler we have always bought from. Audrey was a total freebie this go round, in both airfare, eating in the restaurants and park admission.

We had a blast . . . amazingly fun, non stop smiles, forever memories, over a 1,000 photos and beyond exhausting . . . just what we needed in this very stressful year we all have had.

Bucket list has one less entry scratched off. I would say mission accomplished.

Here are of few photos of the Wilderness Lodge.

The last week countdown is on!!

We leave for Walt Disney World one week from today on Nov. 8 . . . Woot!

We are all so excited to revisit the mouse. This is probably Terry's and my 8th (?) visit, we always have a great time. Jen last visited when she was 16, so 13 years ago. Lots of changes since then. And the grandkiddos? THEIR FIRST VISIT!!!

Yeee Hawww!! One more thing scratched off my bucket list. Hopefully I'll be able to take them again in a couple years when they will remember it better. But no matter, I'll take this visit. We plan on taking lots of pictures, planning to buy them each an official autograph book for character signings, and they can each pick out a Disney Christmas ornament for their tree. This is a tradition we started way back when, and every visit since. We just love our Disney ornaments.

We finally told Aaron we were going in August, when we received our free WDW planning DVD in the mail. We had him watch it several times, and he'd say, "I wanna go there some day." It took everything in us to not tell him until the timing was right. We finally told him but it really didn't sink in. How is a 4 yo supposed to understand? To make it seem more realistic that yes, we really are going, I made him a 30 day countdown calendar. From Oct 8 to Nov 8, he puts a sticker on that day each morning first thing when he wakes up. He runs down the stairs, to place his sticker. And then, like clockwork, he carefully counts the days until we leave. This has been an excellent way for him to learn not only his calendar skills, but also practice counting, and patience. Good thing Halloween was the last weekend before we leave. It gave him something else to look forward to.



Plus this will be their first airplane flights as well. We've tried to explain how it works, going to the airport, boarding the plane, but not sure he gets it yet. Oh heck, it was hard enough to explain our hotel room to him, since he's never done that either. Lots of firsts for this vacation and just glad I'm able to share it with both of them. When I ask Audrey, "do you want to go to Disney World?" She just giggles. But she sure knows Disneyland and gets excited every time we go now, so I know she'll love it too.

So tomorrow, the sticker goes on Nov 2 with only 6 more days to go.

I don't know who is more excited, me or Aaron.

Sprung and Spry

Well a 10 day hospital stay and 5 more days of IVs at home, I'm good to go. I pulled the needle after this mornings last dose. I feel so much better than even at my August discharge. The 2 drug combo I was on this time Cefepime and minocycline really kicked butt.

I mentally prepared for my hospital stay to last 14 days in house. But the swine flu was going around the hospital. It was decided that the risk staying in house was greater than if I was sent home. Infection control on our hospital floor was increased, anyone entering the room had to wear the special N95 respiratory mask. The nurses absolutely hate wearing them because they are suffocating to breathe in while wearing. They entered our rooms, did whatever they had to do quickly, and made a speedy exit.

Two of my CF friends who go to my clinic, were admitted to the hospital at the same time as me, both with swine flu. They were both very sick and miserable. I decided on discharge that I didn't even want to go there, that I would seek out the vaccine as soon as available.

The LA county public health dept started their H1N1 free vaccine clinics the week I came home. I bit the bullet and decided to try to get it on my own rather than wait for my clinic to have it available. They still had no ETA when they would have them. On Sat, I arrived at 7:30 am for a 10am clinic opening. The wait was in a Whittier park, which was nice. The line swelled to 5,000 people in no time at all. I kept my distance from people and wore my mask when I went inside to finally get my poke. So far I've had no side affects at all. My concern of course, was to try to have some immunities built up before we leave on vacation in 2 weeks. The timing couldn't have been better. Now I  just to need to wait and see if it really keeps me from catching it. : )

So soon?

Well, I wish it weren't true, but it is . . . I'm back in the hospital. Between 2 back to back colds, no rest, lots of stress, here I am again, less than 2 months since the last admit. I think this is the fastest turn around I've ever had. I'm expecting my Docs to keep me 'in' for the entire 2 weeks, to make sure I have a chance to rest my immune system from every day life. In a way, I'm not going to push for the second week on home IVs, because I know I need to recoup.

Besides, we are leaving on vacation in 3 weeks and I certainly want to be in tip top shape for all the fun we're going to have. We are taking Jen and the kids to Disney World on Nov. 8 - Nov. 16. We all have had a stressful year and NEED a break. Even though we really can't afford it, we decided since we sold the cabin, we'll use funds from the sale to finance our fun. Woo hoo, another wish scratched off my bucket list.

I just heard some awesome news this morning. A CF friend of mine, Katie who also goes to USC, got her call last night. The call that will forever change her life. She has been on the lung transplant list for 2 years. A match was made last night, and she headed to the hospital at 2am this morning. Late last night I heard the helicopter coming in and land on the roof. In my mind, I thought to myself, someone is getting a transplant of some sort. USC does transplants of every organ possible. Little did I know at the time, that delivery was more than likely Katie's lungs.

I have chills just knowing that she is 6 floors below me, getting her new lease on life. She is 28 and engaged to be married. I pray that Katie has a successful surgery, speedy recovery, and a great life to look forward to. I also want to say a prayer for the donor family for the loss of their loved one. They made the unselfish decision to give someone else life. And Katie said it best herself on her FB page as she was on her way to the hospital:

"Please pray for the family that has just lost their loved one. Our joy is their sadness."

Godspeed Katie!

The End of Another Chapter

My life has been full of chapters . . . some have been great and others not so good. I certainly have enough to fill a book, just not sure how interesting it would be. I always look back at a closed chapter, with memories, be it good or bad. And hopefully, that whatever has just been closed, I learn something valuable from the experience and move on.

This year has been a financial nightmare for us. Terry has had no steady work since last November 08. Little bits here and there have trickled in, but clearly not enough to even cover the most basic of expenses. When May rolled around and the usual busy work period yielded no work for another month, we knew it was time to take action. Something we figured may be in our near future, but now we knew. 

Time to sell our cabin, our mountain home in Lake Arrowhead.

When my Mom passed away almost 10 years ago, (yikes has it been that long?: ( ), I got a small cash inheritance from the sale of her home. We decided to not spend a dime and instead invest the money. My Mom worked hard for her money and I wanted to make sure I gave her memory genuine validity, by doing what she did, invest it. And what better way to invest, than in real estate. 

We decided that we wanted a mountain getaway, close enough to home, yet far enough from everyday reality, to seem like we were away on vacation. We looked in Big Bear Mtn and in Lake Arrowhead. Big Bear was just far enough away @ 2 1/2  hours on a good day with no traffic. Lake Arrowhead, on the other hand, was 90 minutes door to door. We scoured the internet and came across several properties we wanted to see. Our cabin was on the list, even though it was a little more than we wanted to spend. However, being built in 1991, it was fairly new and needed no work. So many properties were fixer uppers, and that would have defeated out purpose of having a relaxing home away from home.

The minute we stepped foot in the door of our place for the first look, we knew that this was it, the cabin of our future. We still looked at other places, but our hearts kept going back to the little home on the corner lot, with a stream running along side. We justified to ourselves that the price and excellent condition was worth our peace of mind to just come up, and enjoy. We made our offer and it was accepted!! We were in heaven, knowing we had our own slice of heaven.

I poured my heart and soul into decorating every room to look, cabin-y. I sewed curtains, pillows, quilts, recovered chair cushions, added snowmen, bear and deer accents. Forest green, maroon and navy blue was the common color theme throughout. I found an old snow sled and a set of deer horns at garage sales and hung them on the wall. I also found an old army trunk, painted it and decopaged whimsical snowmen pictures on top, to be used as our firewood box/coffee table. This place was us, the first place Terry and I bought together as ours.

We made too many trips to count over the years, thoroughly enjoying our little cabin. We had many a lazy weekend with no TVs or computers. Just enjoying the nature, feeding our squirrelies, critters and birds, sitting on the deck watching the ginormous trees blow gently in the wind. We enjoyed trekking over to the old Santa's Village site, where the summer weekends exploded with concerts, picnicing in the meadow as we listened to the Beatles and the Stones. We loved walking into the Village and the Lake area, soaking up the mountain atmosphere. And grocery shopping at Jensens for the best homemade breads and warm tortillas. When my lungs still allowed, we took long walks through our neighborhood and the forested roads. Winter brought on a whole new magical experience, with snow and freezing days and nights. Glorious times sitting by the huge fireplace watching snowflakes gently, pile on our deck. And nothing was more satisfying than going to sleep at night and waking up to a foot of snow. How we loved looking out our windows at the beautiful snowy landscape. *sniff* 

POP!!!

Back to reality . . . the dream ends. Between no money coming in and my lungs not being able to handle the 5,700' altitude anymore, we knew it was time. We called the real estate agent we bought the house from over 9 years ago, to schedule an appt. We ended up listing that day in May to see what happens. The market up there is flooded with foreclosures, people losing or dumping their 2nd homes. Our asking price was no where near where we thought it would be. *sigh*

June and July brought in 2 ridiculously, low offers. We pretty much said "no thanks." I'd rather keep it and rent it out than sell for 'that'. We're not that desperate. We made a few trips up to gradually move out personal items, knowing the inevitable would happen eventually. Finally a decent offer came in mid August. We settled on a price and entered escrow. The last week of September we went up for the last time, to move out the remaining items. We sold it furnished for the most part, except for a few upfront must haves, like the army trunk, Terry wanted it for his office. 

As we finished loading up the last box and took one last look around, I started crying like a baby. Terry and I hugged, in the somewhat empty living room, as time stood still. I couldn't believe this would be our last time in 'our cabin'. 

THIS WAS OUR PLACE, OUR HOME. We closed and locked the door for the last time. I felt like it was a death, the death of a family member and of time treasured.

Escrow closed today. Our cabin is no longer ours.

It hurts like hell to have to do something you don't want to do.

We will forever miss our little cabin in the woods and everything it represented in our lives. It will always be our cabin in our hearts and memories. 

Time to mourn and move on.

Time to let someone else enjoy 'our cabin' as much as we did.

Pull that needle! Yeah, OK . . .

Just a quickie update since so many have inquired. Thanks for all the calls and emails asking about me. I know I should repost when I'm out of the hospital, I'm sorry, but I got busy and forgot. Or the dog ate it. Wait I don't have a dog. It's one of those tried and true lame excuses. : ) The tuneup worked wonders, I can breathe again and the SOB is gone. I feel like a new woman. It always amazes me, how your body acclimates to the gradual downfall of sickness. I just forget how wonderful it feels to feel good again. Sad that it takes a hospital stay and a round of IV cocktails, to once again make me realize just how sick I was.

I ended up being in for a week. I responded so well that my docs let me go home to finish up my IVs at home for the second week. Thank goodness, I was getting bored of the walls, the view of the block wall, the TV and the food. One great thing about this admit was a CF friend of mine was also in house. We were able to visit from our doorways, masked and gloved of course. We had some good conversations and it helped the stay not be so monotonous. Thank you SW, for the visits, the adorable card and as always good to see you again. I wish we could be REAL friends and actually go out and do something together.

My last home infusion was at 5:00 pm Tuesday. I have never had a home health nurse come out to the house just to remove my port needle, because it isn't a big deal, usually. I have accessed my port, stuck the needle in myself, and removed it many times before, no biggie.

The nurse in the hospital had a hard time putting the needle in, which I've been told my port is difficult to access. She pushed it in hard and it HURT, the most ever while having it accessed. The line didn't work, so she pulled it out and tried again, with a new needle. The second time she pushed even harder, me yelping a 'YIKES' to her. Wow I've never had anyone use such force, trying to put the needle in. She established that the line was indeed good to go, got a blood return and it flushed fine. But it just didn't feel right all week at home. It hurt the whole time, and I felt a pinching, needle stick feeling when I moved certain ways. I had never felt any of this before. And of course, with all the August heat wave, the port area felt sticky, gross and sweaty under the clear plastic tagaderm patch protecting it.

With the last IV dose done, I had visions of a needle-free, plastic-free, nice long relaxing shower. I couldn't wait to take the sucker out. I washed up, gloved up and began peeling off the tagaderm, along with some skin. As I'm pulling it off, the needle pinch feeling starts, so strong that I start to get nauseated. I had to peel a little, stop, peel some more, stop. I thought I was going to throw up, the feeling was grossing me out. I finally got the tagaderm off after about 5 minutes. I looked at the needle, it looked fine, no redness signaling infection, other than my irritated, blistered skin.

So here goes, I grab the red butterfly end of the needle and pinch. At this point, the needle is supposed to pop out, no problem, but it resisted. I sit down and my head is spinning. I rest a few minutes, until the queasiness subsides, stand up and try again. I pinch hard again, but no go. At this point, I have a cold sweat and pass out feeling. Oh crap, why didn't it come out? It's at the end of the day and I'm thinking, if I have to call out a nurse, I have to do it now. I decide to try once more before I make the call. I take a deep breath, so I don't keel over trying to pull the flippin' needle out of my chest. I'm determined, I pinch, hard as I can, and finally . . . pop. . . it came out. OMG, what a relief!! I was giddy with thankfulness that the evil needle relented. I won, bwa ha ha ha.


The evil needle after the fact.

It's funny, the quick transition I go through after a needle is pulled. I go from an exhausted hospital patient, getting up every 6 hours and do an IV to feeling back to my old self, I'm done, carefree feeling. Happy to be disconnected from drug routines and reconnect to gloriously boring life.

And happy to take a plastic free shower again after 2 weeks.

That time again, in more ways than one.

I know, I'm a bad, bad blogger. My entries have become few and far between. It's not that I haven't had anything to say or write about. Trust me, I've got PLENTY to say. Unfortunately, the all consuming subject I have plenty to say about, I won't talk about here. And those close to me, know what I'm referring to.

That said, literally, everything else has taken a back burner. So much so, that I've been neglectful of certain areas of my life, like this blog.

And sleep.

Oh, how I miss my sleep.

My mind will not shut off. The 2am bewitching hour rolls around, and as if on cue . . . *bink*. . . my eyes open, I'm wide awake. I toss and turn, arrange my pillows in a myriad of mounded configurations, trying to get comfortable. I switch my brain to think of peaceful, relaxing things, but to no avail. My insomnia then becomes Terry's problem as I keep him up with my bed bouncing, trying-to-get-comfortable gymnastics. No matter how hard I try, I cannot go back to sleep. I finally give up and get up. I know I'm done for the night, ugh.

Being a sleep deprived Jodi, is not a pretty sight. Crankiness and no patience sets in along with couch potato-itis. The result? About 15 lbs. in the last year, over and above a comfortable weight for me. I know I need to get my sorry butt up and out for walks or exercising, but I'm too tired. My mind in turn tells me that if I do indeed try to exercise, I'll wear myself out so therefore maybe I'll sleep better. I also know that my decreasing lung function contributes to the 'no motivation to exercise.' Hmmmm, I've got to find a way around the Catch 22, vicious, mind-tired cycle. Can someone give me a kick start?

Numerous nights of sleep deprivation, add in emotional stress, a huge pinch of uncontrollable coughing, becomes a recipe for full scale health decline. I've felt it coming for at least a month. My last clinic visit along with my declining PFTs were revealing the all too familiar story and ending for me.

Last weekend was the last straw. I coughed all night for 2 solid nights, not sleeping a wink. Drudging up the stairs became a chore fighting for breath. Low grade fevers hovered over me like a cloud. Any sort of energy to do anything was a passing thought. Infection was settling in and I was physically and mentally spent.

I waved the white flag and surrendered.
I emailed my CF nurse on Tuesday morning first thing, asking for a 'sick' appointment to be seen in clinic. Within minutes of my email, she called me and said, "girl, with all you've got going, I've been wondered when you would concede. I'm requesting you be admitted right now, sight unseen. I know when you ask to come in, you're ready." She was absolutely right, I know when it's time.

Time again for a tune up.

I checked in to USC Tuesday @ noon for another round of IV antibiotic cocktails. It is now Saturday, I'm still in lock up and feeling much better. The productive cough has subsided . . . the magic, poisonous elixirs are doing their job. I'm starting to get bored, and feel like a caged animal.

That's when I know, it's time.
Time to go back home.

Avocados, peaches, and lemons . . . Oh my!

While I love each of these fruits individually, I'm surprised I still do eat them. As a child I had a love/hate relationship with all three.
Let me explain . . .

I lived in the same house my whole childhood. My Dad planted dichondra lawn in both the front and back yards. You know the stuff, it is so fragile, children can't play on it and direct sunlight burns it. My brothers and I were constantly being told, 'stay off the grass, you'll kill it.' Great, so we had the yard that no kids could play on. And we were teased for having flower shaped grass.

To keep the freakin dichondra shaded, we had 3 very strategically placed trees in the back yard, so the sun rays never reached and burned the lawn. Yep, you guessed it . . . a HUGE avocado tree, a peach tree and a lemon tree. If we were to have large trees in the yard, they might as well produce something to eat, was my Dad's rationalization.

The trees grew gigantic and produced so much fruit, that the daily chore of picking the bounty became 'the kids' job. After all, we liked to climb trees, didn't we? Heh. We were also designated as the 'pick-up-the-rotten-fruit-surrounded-by-fruit-flies-and-maggots-squashed-into-the-dichondra. Especially the peaches. Amazing how nasty they became after falling to the ground, sitting in hot weather. Step in one, and it felt like stepping in squeeshy dog poop. GACK! The lemon tree was my personal enemy because the thorns always stuck me with it's sharp 'knives' as I called them. The tree was not happy until I came out of the lemon picking session pricked and covered in blood drips.

It seemed the fruit bearing season lasted F O R E V E R. Our summers were consumed by picking, bagging, squeezing, juicing, cutting, pitting, skinning, peeling, and freezing.

On the upside, I do remember the perks that went along with the fruit monsters. Fresh baked peach cobbler, peach pie, peaches and vanilla ice cream, fresh squeezed lemonade, lemon meringue pie, lemon cake, and guacamole. However, by the end of the fruit season, I'd be so sick of eating endless versions of the same fruit over and over again. I think it was my Mom's mission in life to see how many different ways she could use the fruit at every meal. I swore as a kid that when I became an adult, I would never eat peach cobbler again.

One last big perk was the avocado tree. It produced way many more than our family could possibly eat or use. So, my brother and I would put on our entrepreneur hats and sell them. We filled brown lunch bags full of avocados, stacked the bulging bags in a wagon, and walked around the neighborhood, 50¢ a bag. We never had a problem selling out every day. For the life of me, I couldn't understand why someone would spend a whole 50¢ for a bag of ugly, wrinkly fruit. I HATED them with a passion. An hour of selling would finance our walk to the local Savon, to buy candy bars 3 for a 25¢ or a triple scoop of ice cream from the ice cream counter with change left over. Now that was worth it in my mind.

Oh how things change as we age. Now I LOVE that ugly, green fruit, it kills me to pay $2 a pop for an avocado.

Last week, I picked the fragrant, ripe, 20 or so lemons from the tree in my backyard. I traced my Mom's steps as I squeezed out every ounce of juice into ice cube trays and froze them to have instant, fresh lemon juice at my disposal year round. And my lemons are THE best!

The smell of the citrusy, sour juice made me want the jello lemon cake my Mom made. So of course, when all the juice was squeezed, I made the luscious, lemon cake. Just seeing my Moms handwriting on the old, faded recipe card flooded my mind with the memories of those damn trees and the lost summers picking fruit.

I think I'll go to the store to buy some peaches. I need to make some peach cobbler, just because.

Audrey's First Birthday Portraits

I couldn't let Audrey's first birthday pass without a portrait.
Jen and I made a trip to Picture People at the mall.
They took tons of poses, these three we couldn't resist.
She is such a little sweetheart and a living little doll.

No Go

The clinical trial I began is a no go. I had a complete physical, urine test, a host of blood tests, sputum samples, PFTs (pulmonary function tests), and lung xray. The test results came back and I got the call on Monday afternoon. I failed the criteria to participate in the trial.

WHY?

Medically, I failed for one reason only. My sputum cultures tested negative for Pseudomonas, a common bacterial organism found in CF that the cipro targets. While the negative culture fails me for the trial, it is great news for my medically. One less bug in my lungs to cause problems and damage. I've actually tested negative for Pseudomonas for about a year now. When the MRSA bug I do test positive for, becomes dominant in my lungs and flares, the Pseudomonas takes a back seat, and vice versa. I seem to always have either/or created lung havoc.

So I guess I have to wait for the next clinical trial to come along I qualify for. Until then, I have 8 less drives into LA.

Audrey's First Birthday Party

I can't believe Audrey is one year old already. Where does the time go?



Jen had planned a Tinkerbell party at our nearby park so the kidlets had plenty of room to play.
We woke to an overcast drizzly morning, but were hoping the sky would clear for the 2:00 party.
At 11:00, the sky opened up and the rain soaked the ground. Visions of children playing in the wet grass and sand was not what we had planned. By 1:00, it was still drizzling and the sky threatening. A last minute decision was made to just have it here at the house. Phone calls were made to all the party-goers to announce the switch. We all clicked into high gear to unpack the park goodies to set up in the house. In a mere 20 minutes, the house was ready, all decked out in Tinkerbell decorations. You would have never known the party wasn't planned here all along.

Jen resurrected her cake decorating skills and made a beautiful Tinkerbell cake. We put out an assortment of homemade goodies and drinks. Everyone showed up and it turned out to be a very nice day afterall.

Happy Birthday baby face! We love you very much.

Guinea pig time once again

My Doc asked me last month if I would participate in another CF clinical trial. He knows me and my eager willingness to help find new treatments that make our CF lives healthier, and hopefully, last longer. And who doesn't want to live longer when you've been told you won't.
So sure, let's do it.

This trial is testing a new application of the broad-spectrum antibiotic Ciprofloxacin, commonly known as Cipro. Most people know it as an antibiotic prescribed to treat bacterial infections, such as a Urinary Tract Infection. It is most commonly used as an oral tablet or a solution through an IV. I've used it in several of my IV rounds, usually accompanied by another antibiotic IV. But in the trial, I will be inhaling a powder version directly into my lungs using a newly developed inhaler device, which is also being tested.

The trial will last approximately 3 months, 9 visits spread throughout the time frame. I will be subjected to complete physicals, lung xrays, sputum samples, urine tests, pregnancy tests (ha ha, don't think so), blood tests and pulmonary function testing at every visit. The study Doc and staff will poke, prod and analyze me, charting my results, if any. This is also a blind study, so I will not know if I am actually taking the drug or a placebo. I am randomly assigned, so even the doc doesn't know if I am actually on the drug.

I have mentioned to people that I subject myself to clinical trials. Some are horrified and ask, "why would you do such a thing" or "why subject yourself to so many unnecessary tests and pain." And I respond, "why not, if I don't, who will?"

When you have an incurable, terminal disease, you know down deep that your only new options for medical hope lie in the unknown and untested. We CFers are a tough breed. We withstand so much medical intervention and dangerous, poisonous drugs just to stay healthy. I know many of us are willing to do just about anything to help each other by donating our time and bodies, testing new treatments, hoping for the cure. So what, we are poked a few more times . . . big deal . . . I've had much worse.

Without us, the CF patients, offering our bodies to try new drugs or new applications of old standby drugs, new treatments never make it into the pipeline or mainstream as a viable medical option. I'm proud to be able to have enough lung function left to be able to participate in such important research. It could mean a better chance at life for the just diagnosed child next door.

Wish me luck, I start tomorrow, Tuesday June 16.

Trust me, the most painful part will be fighting the traffic driving into downtown LA. ; )

Another Grandbaby!

I have some good news I can finally share.
This is an official announcement that we are grandparents again!
Terry's son Shaun and girlfriend Amanda, who live in Portland OR had a son, named Brody Shaun.



Of course, Terry is chomping at the bit to see his new grandbaby boy. We planned to drive up 2 weeks ago, something came up, so we had to cancel. As it turned out, Terry had a job walk and measure at a grocery store owned by Kroger in Richmond, CA a suburb of Oakland. YAY, a day's work! It couldn't have worked out more perfect to coincide with our drive to Portland.

Here's the plan of our quickie turn around road trip:

Thursday May 14 - leave before the butt crack of dawn to beat LA traffic, arrive early afternoon Berkeley BART station, park the car and BART over to SF, spend a couple hours toodleing around SF, eat dinner at Fisherman's Wharf area. Early evening BART back over to Berkeley BART station to get the car, drive the 1/2 hour to our hotel in Richmond.

Friday May 15 - Terry works 6am until lunch or whenever he finishes up the store measure/walk, while I stay at the hotel. Drive 10 hours to Portland, OR.

Saturday May 16 & Sunday May 17 - Visit all day with Shaun, Amanda and baby.

Monday May 18 - Drive 10 hours to Tracy CA (South of Sacramento), check in hotel.

Tuesday May 19th - Drive 7 hours to home.

I wish we could take our time to visit more days or see relatives along the way, but this is a time and money crunch visit. Terry has a ton of work applications out there, and we would hate to miss an opportunity of a call back.

I'll post some pix when we return.
Now, if I could just remember where I put our travel toothbrushes.

Piggy hysteria

*cough, cough* again *cough, cough*

This is my life, a chronic cougher. Most times I don't even notice my random coughs unless they become full on heaving attacks. Coughing in public, has always been a sticky wicket for me. I try very hard to discreetly cough into my elbow or both hands, to not only muffle the sound but to catch my contagious germies that everyone assumes I'm so generously sharing with them.

It never ceases to amaze me the comments people so freely let fly. Comments like, "I had that last week" (don't think so) or "That doesn't sound too good" (really?) or "Maybe you should see a Dr." Um, yeah, if you only knew how often I DO see the Dr. and still, the cough never goes away. I have my canned answer to all the remarks, "I'm not contagious, it's my allergies" That usually shuts them up and puts them at ease.

So today in the grocery store line. . .

*cough, cough* again *cough, cough*

turns into another
*cough, cough* again *cough, cough*

back away from the line, turn my head and
*cough, cough* again *cough, cough*

All the while coughing, I was trying very hard to discreetly mask my cough as I always do. I'm very aware of the stares of horror my sudden outburst of coughs create. I finally feel like I'm composed and proceed to the end of the line again. The woman in front of me turns and says, "Have you heard about the swine flu? Maybe you should stay home, just in case."

Me, in disbelief, ditched my canned response and abruptly said, "No swine flu here, just a little terminal lung disease." She quickly turned around forward and I switched lines. I felt my blood boil and knew I had to leave the area before explosion. Ugh, I so felt like a labeled pariah. Maybe I should just stamp my forehead with "no I'm not contagious."

The media is frenzied over the swine flu. True, it could become a reality, rendering a multitude of people sick. Granted a flu that will make them sick and have to stay home from work or school. For the most part, normal people who catch it will not die. Only those with chronic health problems will be at risk for death, like me.

Welcome to my world. I take precautions every single day of my life to keep from getting sick. My trusty bottles of Purell follow me everywhere, ready at a moments notice to wash my hands. I worry every day about catching a cold from grocery shopping, a worse scenario for me that the flu for you. When in public, I meticulously pay attention to everyone around me, scoping out potential sick people. The slightest sniffle or cough detours my path to go out of my way to avoid them, but in a discreet way. I would never think to make a rude comment about the state of their health.

You can bet if the swine flu invades OC, I won't go anywhere or have very little contact with anyone. I won't think twice about going in public with mask and gloves. Stare at me all you want, won't bother me.

*Snort snort* Now that I think about it, maybe the sight of me decked out in my protective garb will keep everyone away from me. 

It would sure make my life a whole lot easier.

A happy, pooped weekend

This last weekend was interesting. Both extremely busy, productive and surprising in many ways.
Why pooped? Well read on and see why . . .

First off, Saturday was our annual neighborhood garage sale. It was sponsored by our tract realtors who heavily advertise, put up signs and bring us donuts as we sell. We participate every year to rid ourselves of cast offs, junk, clothes, and trinkets. We always have a great turn out making our day worth while. This year was no different . . . to the tune of $407.00, a truck load of extras hauled off to Goodwill and lots of empty boxes. YAY!

I vowed to never leave my kids the burdensome task of cleaning out my collected junk when I leave this earth. I finally came to the conclusion that I needed to purge all the stuff I've had piled in closets, thinking someday I'll use it or need it. If it hadn't touched it for a year, it was tagged and earmarked for elimination from my life.

For weeks before the big day, I'd take a room at a time, purposefully touching just about every item we own. I'd ask myself, do I need it? At first it was hard to part with some things, but it got easier as I mentally let go. After a while I was on a mission. I was a mad woman, roving from room to room glaring at everything, what else can I get rid of . . . muuwaaahaahaa!

Then came the difficult task. My Mom's boxed things that I had saved, for the ole sentimental reasons. Like the silver plated tea service passed down to my Mom from my dear great Aunt Lee. I have never used it, Jen didn't want a stuffy looking, ornate silver set. What to do? Price it and see what happens. BTW, it never sold and is now on Craigs list.

When my mom passed away 9 years ago, she had at least a 50 year accumulation of stuff. In my eyes a lot of it was junk, but for whatever reasons, she held on to things that should have been tossed years ago. Being a child of the depression, surely had some impact in her hoarding. Much of it held sentimental value, like old dishes from when she and my Dad first got married, even though boxed and not used for decades. It was an enormous undertaking to sort through and get rid of her treasures. I felt guilty every time I tossed, sold, or gave away. These were her things that she held dear. I was, in essence, disecting and throwing her life away.

The things my Mom's husband saved was a whole different story. His domain was the garage, filled with tools, do dads, gizmos, and the most scary, containers of unknown dangerous chemicals. His passing 7 years before my Mom, left the garage intact with his crazy crap. Thank goodness his kids filled 3 truckloads of stinky, greasy unknown containers to the hazardous waste dump.

Back to the sale . . . I was so busy on Thursday and Friday organizing, pricing, boxing and unboxing junk. I ate on the run and barely noticed that I had not gone to the bathroom, you know, #2 bathroom. I felt constipated but really, nothing registered. I quit taking my enzymes a couple months back and had no problems at all. I chalked my 'lack of dump' to busy and nerves.

Saturday morning came early, unpacking boxes at 6am for the early birds. I had a stomach ache and blew it off. As the day progressed, the ache continued and the urge to go was pronounced but I couldn't go. The sale ended in the afternoon, we sent out for chinese take out, ate, and it HIT! I HAVE TO GO NOW! Problem is I couldn't. Oye, I felt like I needed a roto rooter job. Even though I have never experienced this problem, I knew exactly what was wrong, a bowel obstruction. In the CF world, bowel obstructions are common. Not being able to digest foods properly leads to all kinds of GI problems with back ups, diarrhea, extreme gas, and not absorbing calories, nutrients and vitamins the body needs.

The pain became excruciating even after taking Miralax and Milk of Magnesia. Nothing seemed to work. I was in agony and crying. I couldn't sit, I couldn't stand. Finally at 6pm, I cried uncle and begged Terry to take me to the ER. Oh great, what in the world would they have to do to my bum, were thoughts that raced through my mind. The revolting image of a plumbers snake, probing deeper and deeper, overpowered my mind as I writhed in the car seat trying to find a position less painful.

I enter the ER, lots of people, great. I fill out the quicky info form and immediately circle the #10 pain face on the scale of 1 to 10, what is your pain. That should speed up my admit. They bring me back within 5 minutes, take my blood pressure, temp, and ask a few ??. As the nurse clipped the lovely hospital bracelet on my wrist, I felt liquid warmth, in my jeans. Uh oh, I plead for a bathroom NOW! I now know the liquid miracles I drank earlier were finally working. It didn't take long for the whole load to evacuate. WHEW, HUGE RELIEF! I felt like I had just given birth to several softballs, but I didn't care, they were gone from me, happily being flushed down the toilet.

I exited the bathroom with a calm, relaxed look on my face and Terry knew instantly what had happened. I told the nurse, but she said I still had to see the Dr. since I was officially admitted to ER. Thankfully, the Doc came right over, asked if I felt better (well, yeah), looked at me in amazement and couldn't believe he was talking to a 53 yo CFer (oh no, here we go again), asked if I wanted an exam, (no thanks), and said have a great evening! Outta there!

We drive home, relieved, me completely 'pooped' out tired and in bed early. Turned out to be a 'productive' day all around. ; )

And enzymes . . . definitely back on my menu with meals. Oh joy.

Huh, what's this?

It's the war zone.

Clippers, combs and scissors vs Bucky.

And this was only Round 2 of 4.

Every Spring, we have Bucky shaved into a lion cut. People ask us why on earth would we have the cat shaved. Well, simple answer. 

FUR BALLS. 

Fur balls that lodge in his stomach that create huge vet bills.

Fur balls invade the house as his winter coat sheds. Our carpet turns from oatmeal color to polka dotted black splotched. I'm constantly picking up and vaccuuming up enough fur balls to make a sweater. I've actually thought about that before. Hmmmm, a Bucky fur sweater, I bet it would be warm.

His fur is very fine and long. By the end of winter, he has massive fur matts under his legs, on his belly, and dangling from his butt fluff. Not to mention that said butt fluff harbors all kinds of stick-to-the-fur nasty poopy residue, pewww-eeee. 

The first crack of Spring brings on the big shed. One year, despite our smearing fur ball Petromalt glue in his mouth every day, he still ended up in the vet with a massive fur ball that required 3 enemas to pass it. The vet said if the 3rd one didn't work, they would have to surgically remove it. Um, no we don't want to go there again, so lion cut it is. 

I took him to Petsmart for the first couple cuts. The groomer was impressed with how well behaved Bucky was during the process. He became a statue, stayed in any position she laid him, while the clipper buzzed his fur off. $60 please for less than an hour of clippity clip.

That looks like a piece of cake I thought. Being the do-it-yourselfer that I am, I bought the exact clippers the groomer used and decided to clip him myself the next time. Plus in my naive thinking, I could do a quick clip job once a month during the summer months without the 2 to 3 Petsmart visits per season. The time was now so no time like the present. I gathered towels, combs, brushes, scissors, shaver, and Bucky and locked us in the bathroom for our first session. Immediately the screaming protests began as Bucky stink-eyed all the scary looking instruments around him. 

Now do you think for a second that Bucky would behave for me like he did the groomer. HA! No, No, NO! It took all the muscles I had to hold him down with my left arm while the right manuevered the clippers very carefully over the moving target body. His back and smaller areas, that I could get to, took me over an hour . . . enough for the 1st day. I could see this would not be as easy as I once thought. Plus I was exhausted, covered with fur and sneezing. So for 2 more days, I clipped a little here, a little there reassuring Bucky the whole time, that yes he would survive another day . The fourth day included a bath for a clean rear end, and one more day of clipping the butt fluff . . . by far the hardest and worst. I did most of it with comb and scissors. He would not let me even come close to the nether regions with the blue buzzing monster. Do you blame him?

And before anyone thinks, oh how mean to shave your cat, think again. When all is said and done, Bucky actually loves his new do. He begs for more petting because he can feel it on his skin. And I know not having to lick all that long hair is a relief for him. He seems very happy and more energetic once the fur and the process is history.

Before and after

So, here I sit, with sore arms, a few unintentional scratches, and a bruised ego to think my 20 lb cat can put ME through such misery and fight. 

But I love him anyway.

And I have a whole new appreciation for the groomer too.

fear

Fear is powerful.
Fear is complex.
Facing fear is terrifying.

Like it or not, I've come to realize that my life revolves around and thrives on fear. And by fear, I don't mean the scaredy-cat, fear of heights or clowns. Although I have been known to cringe at the sight of Bozo and I hate to fly. My familiar fear becomes an all encompassing reality that plays on my emotions. But, I also welcome fear when it serves as a beneficial catalyst, kicking my butt into gear. Fear of the unknown makes me work harder in a positive direction, just so I don't go to THAT place of unknown.

Even as a kid, fear motivated me. I always tried to please my parents so I wouldn't get into trouble. My Dad was hard on my 2 older brothers, I never wanted that wrath bestowed upon me. Being the youngest, I took lots of notes from their mistakes to avoid the same fate. I worked hard in school to get good grades, for fear of retribution if I didn't. I always had a fear of a higher power, showering me with reckoning consequences from any bad behavior. So, I tried to be a good girl. Hmmmm. Ha!

As I matured, fear took an unconcious back seat living my rebellious teen years, no fear lifestyle. I quickly realized that kind of life was not for me, got married @ 21, had 2 babies. Fear was absent and replaced with pregnancies, building a family and happiness until my CF diagnosis @ 25. That was a devastating, real life mortality fear. My mind became overwhelmed with unknown questions of what was ahead. Will I survive the one year the Doc gave me to live? Will it be painful? Will I ever live to see my babies grow up?

As time marched on, I realized that my CF was not going to kill me in the near future. As life calmed down and I regained health, my fears and questions for myself subsided. I was too busy raising my kids to worry about fear for myself. Fear was reserved for anything directed at my kids, whether it be physical or emotional. My personal displaced fears were piled into their well being, keeping them safe. I know I failed miserably, protecting at least Jen from emotional fear. At times she was overcome with the 'what if's' of life. She has done that since day 1, always asking me an outrageous 'what if' questions of some catastrophic event that would never happen. For instance, "what if the sky turned yellow, rained for a year and we all drowned." I went through a lot of years of trying to reassure her as a little girl, that no, this or that would not happen. I would wonder where the heck these irrational, unreasonable fears, were coming from. Wild imagination or real fear? *shrugs*

Divorce from my kid's Dad, started the BIG FEAR monster raging, out of control. How on earth am I going to support me and my kids by myself? How can I be Mother and Father? How can my son have a positive man, Father role model when his own Dad was mostly absent? How can I reassure my kids that everything was going to be OK when I didn't even feel it myself? How am I going to do this, period! Not to mention the real life, painful fear my kids suffered as a result of their Dad leaving. He will never know the depth to which his decisions shaped them. To this day, that fear is still present and being dealt with . . . I don't think it will EVER go away.

Gradually, over the years, my fear has reappeared in a different way, a good way, front and center in my life. Fear motivates me to climb out of denial and face what needs to be done medically and healthwise. I unconsciously hold fear close to me, within reach, constantly reminding me of consequences of what could be if I'm not a compliant, take charge CFer.

I fear for my loved ones, not knowing the impact CF will inflict on them. I fear for Terry, someday becoming my caregiver, a role he has signed up for by being my husband. A loving man who has assured me, that he is not going anywhere but to be by my side to the end. That is such a comfort. I fear for my kids, not wanting pain for them seeing me progress downhill, so I hide it when I can. I fear for my littlest grandbabies, that they will remember me. I try hard to create fun memories, so they can say, "I remember, Grandee loved me."

I fear physical pain, but I don't fear death. To me, death is my escape when life on earth goes from bad to worse to unbearable. I know I'll be in a much better place without pain or fear and able to breathe again.

For now, I recognize my fears and welcome them as a part of my life.
Good and bad.
From beginning to end.

Happy Keester!

This was just too cute not to post.

ALL I NEED TO KNOW ABOUT LIFE
I LEARNED FROM THE EASTER BUNNY

Don't put all of your eggs in one basket
Walk softly and carry a big carrot
Everyone needs a friend who is all ears
There's no such thing as too much candy
All work and no play can make you a basket case
A cute little tail attracts a lot of attention
Everyone is entitled to a bad hare day
Let happy thoughts multiply like rabbits
Some body parts should be floppy
Keep your paws off other people's jellybeans
Good things come in small sugar-coated packages
The grass is always greener in someone else's basket
An Easter bonnet can tame even the wildest hare
To show your true colors you have to come out of your shell
 
Have a Happy Easter, my friends.
 

The pile of crap that is 2009 . . . so far.

Oye. I was so hoping for a good year. Turns out this is probably one of the worst stress inducing pile of 3 months I've had in years. And I can't blame it all on CF.

#1 - No Money Stressor
The economy has hit us waaaaaay below the belt. Terry has had NO work. I take that back, I lied, maybe a total of 3 days since New Years. Whoopie.

Self employed architect = no work = no money coming in = no unemployment or any other kind of $$ help that everyone else gets. He has applied for work everywhere, Home Depot, Lowes, even Disneyland, no place is off limits when it comes to a job. And guess what – surprise, surprise – every place is laying off, not hiring. Online jobs = a joke or a scam preying on desperate, job seeking folks.

#2 - Health Crisis Stressor
My February hemoptysis incident. See 2 posts below, ouch.

#3 - Cars Taking a Dump Stressor
Both Terry's truck and my car required large repair bills in February. Our vehicles are 10 & 11 years old and we've been very lucky that we have never had major problems, until now. Wouldn't you know, they both whine for big dollar repairs when no money is coming in.

#4 - House Taking a Dump Stressor
The house must have been jealous when it heard the cars collecting a bail out. (Sound familiar? . . . not even going to go there) Our main sewer line from the kitchen to the city sewer, pooped out. Plugged up, wouldn't drain, couldn't snake it, just cracked and broke. URGH!!! The plumber dug a nice 6' deep x 4' wide hole in the front planter to tie in a new line to the city sewer. Then a 1' wide x 3' deep trench was dug out of the grass, the whole length of the front yard to accomodate the new pipe. Now there are reminder grass lumps and bumps of a huge hole & trench in our front yard. Not to mention the huge hole in our cash reserves. HA! Or what's left of it.

#5 - The-old-dump-the-vacation-home Stressor
Because of the crappy economy, we decided to sell our little mountain cabin in Lake Arrowhead. It is no longer feasible for us to keep it up financially. This was a heartbreaking decision that we dreaded. Although, we have known for about a year, that physically, it was hard for me to stay in the altitude of almost 6,000 ft for any length of time. My lungs labored with every visit. For both reasons, health and financial, it's time. It will very hard to say goodbye to our little get-away when and if it sells.

#5a - The-old-dump-the-vacation-home-something-goes-wrong Stressor
Related to #5. We went up to the cabin to thoroughly clean it up before it hits the market. There was still snow on the ground and roof. A huge branch on the roof, lay stuck in the snow. We unpack the truck and Terry retrieved the ladder from the basement. He crawls onto the roof and it begins to snow. He quickly grabs the branch and pulls . . . uh oh reisistance. It finally pulls out . . . yes out . . . of the hole it made in the roof. Terry starts slipping off the roof as the snow quickly blankets the roof!!! He carefully climbs down the ladder realizing, the roof is too slippery and steep to go back up to fix it. NOW WHAT? We've got a 5" flippin hole in our roof above a bedroom with alternating wet snow and hail pouring in. Plus, it is Sunday. We immediately try to contact a roofing company on the phone. Finally, after about 5 calls, success! A very nice young man came out and fashioned a shingle from metal and bravely navigated the slippery roof to cover the hole temporarily. It worked. He said he would be out later in the week, after the snow stops to fix it for good.

He called us Friday, all done. Yeah, no more hole on the roof but a gaping hole in the check book we can't afford now.

#6 - Cancer Invades Terry's Nose Stressor
Terry found out the strange, growing bump on his nose is skin cancer, basal cell carcinoma. Mind you, only after months of me urging, (bordering on nagging which I hate), did he finally get it checked and biopsied. So this last Tuesday, Terry had surgery, a huge chunk cut and dug off his nose. The next day, the plastic surgeon weaved his magic to make it all look like a normal nose again. He has a 1 1/2" stitched cut on the right side of his nose. He's not too worried about the healing and the scar, but rather the incidence of reoccurance. Hopefully this is a done deal. Now maybe I need to nag him about making an appt. for his 4 year overdue colonoscopy, he he. ; )

#7 - BYE BYE Retirement Stressor
The stock market screwed our retirement and IRA's . . . ENOUGH SAID.

#8 - Heartbreak Stressor : (
By far, the most enormous anguish and heartbreak of my life right now. I won't discuss specifics here, because it is a personal family problem that I choose to not make public. Suffice to say, it has literally cut me to the core leaving me awake at night wondering and praying "why?". I'm devastated to see the people I love the most on this earth in such pain, agony and distress caused by another. I feel so helpless, yet am trying to support and understand as much as I'm capable. I don't see this going away any time soon.

I think that's enough in under 3 months - blech.
It's no wonder I can't sleep and have a constant headache.