A Long Ride

Four years ago, my mom drove my husband and I to the airport.  We stayed up late the night before packing and repacking our very large suitcases with what we thought our daughter might need.  We had the bottles, formula, diapers, clothes in a variety of sizes, shoes, toys, medicine, shampoo, lotion, and, of course, the diaper bag. 

As we were packing, we had the election results playing in the background.  Our dog had already gone to live with his grandparents for a few weeks.  So, things were pretty quiet.  Of course, our suitcases weighed too much.  So, some clothes got left behind in the interest of the very important snacks and peanut butter.

On our ride to the airport, it was a little too quiet.  You could feel the energy in the air.  We had all waited years for this day to arrive.  I told my mom, "I have done a lot of crazy things in my life but this might be at the top of the list."  China is, after all, half way around the world.  After waiting so long, I didn't get too excited.  It didn't seem real.  I was afraid to believe that this was really our time.

Then, the most amazing thing happened.  Our family changed forever in ways that I never imagined.  Our daughter is the most amazing person that I have ever met. 

Every so often she talks about her nannies in China.  She likes to tell me that they took good care of her.  She is learning Chinese so she can take her Dad to visit someday.

A few weeks ago, I had the chance to visit with a birth mom who has a daughter living across the country.  You could hear the things she has missed in her daughter's life in her voice and on her face.  I told her what I wish I could tell my daughter's birth mother.  You gave her parents the most amazing gift. 

So, today, I am thankful for my amazing daughter who is busy learning to read.  I am thankful for my charming husband who is willing to get on a plane with me for adventure that we could have never imagined.  I am grateful for my daughter's cousins who love her so completely.  I am also thankful to my dog who decided to come home again. 

Lastly, I am thankful for my daughter's birth parents and the nannies who took care of her until it was our turn to bring her home.  May God bless them each and every day!

Blessings,

Cindy

Doctor Day

Well, since my last post, I have been to the doctor and back again.  As it turns out, there is a medical reason that might make me want to climb back in bed.  So, we are going to switch things up and hope that helps.  The good news is that my weight is beefy.  My husband has never known me so beefy.  In this case, beefy is good.  My lung function continues to hang around the same general vicinity so we continue to wait and see. 

Yesterday, I got to Skype with my super smart friend.  I don't know why we didn't try this earlier but it made me happy.  She has been trying to walk her dog every day.  I think that is a fair goal.  Like I said, she is super smart. 

The big news around here is that my friend got new lungs last week.  She is doing well and had her incision closed so on the road to recovery.  When I heard the news, I sent a prayer request.  This is just a sample of the folks who responded in no particular order but I think it is pretty cool:

My super spectacular former assistant
My former Development Officers who agreed to work with me
My fellow Moms in Mom's Club
My former colleagues both here and in Indiana
My friends from college
My friends from grad school
My favorite soloist at church
My former philanthropy book club leader
My friends from high school
My friends' moms
My friends I met in China
My friends waiting for me to get home from China
My "kids" from my time as a Youth Ministry Director
My weekly dinner date ladies
My former residents from my time as a Resident Assistant
My "old girls" from down the hall
My most recent new friends moving to live in our community
My friends waiting at evening worship in college
My favorite realtor who is still friends with me even though I made him crazy
My favorite friends in Indiana
My friends who took me in when I was a new stay at home mom trying to find my way
My fellow friends with CF
A friend who lost a loved one to CF
My favorite friend from Sunday School
My relatives by birth and by marriage
My secret pal who was waiting in Japan on our way to meet our daughters
My sassy friend who told me to wait at the race track when I reached Indianapolis
My friend who was willing to get on a plane, train, and taxi with me bound for London

This list represents nearly 80 people from coast to coast.  Thank you for your prayers! 

Blessings,

Cindy

Host

Two weeks ago, I made a confession to my friend.  For the past two months, I have wanted to crawl back into bed and pull the covers over my head.  I thought it would pass but it seems to persist.  I can't say it is any one thing in particular.  I actually sat down and made a list.  Stop laughing.  Lists are good.  I came up with nine possible contributors.  It is fair to say that I am not handling all of the changes in my life or my people's lives as well as one might hope.

So, last week, I called my Grandma and invited her to spend a few days at my house.  I didn't think she would come but she was tickled.  We got to spend time eating ice cream, watching soccer in the rain, and teaching my daughter to play Rummikub amongst a host of other fun things.  My husband was the perfect host and brought her to church for me so she could go to the late service for Installation of our new Senior Pastor and still get in her morning yoga routine.  We could all learn a few things from her.

While she was visiting, my friend invited me for dinner.  When I explained that my Grandma was visiting, she invited her too.  She is not only a really good cook but also a very gracious hostess.  It struck me that hosting is one of the prayers in action that I had never considered.

Today, I went to my cousin's home for a baby shower.  It was really a great event with delcious food, good company, and delightful flowers.  On the way home, I was thinking about what a treat it was to just show up and have a good time.  Now, don't get me wrong, I like to host when I am able but it really is fun to get to see folks without being the one who made it happen. 

At the shower, my sister asked me if I wanted to take home some pumpkin bars.  When I accepted, she said, "Oh good.  I already put them in your car."  She is another hostess who knows how to throw a party and make it look like it was easy.  She has already been busy planning our next adventure.

Earlier this week, I was putting my daughter to bed when she asked if our friend at church was still in the Big House.  When I confirmed that he was but he was supposed to get out the next day she said, "Wow, that's exciting."  Amen, darling.  Amen.

So, today please say a few prayers for our friends with CF.  One is working on her support system and working the long course of IVs.  One is waiting on new lungs and needs perserverance to stay the course.  Another is getting over pneumonia and surgery.  Another that I didn't know personally lost her fight this week.  Her funeral was just down the street from my house. 

Sometimes CF just hits a little too close to home when you are trying really hard to focus on other things.

Blessings,

Cindy

Doctor Day

Well, I managed to slide by without a doctor visit for quite some time.  Now, fall has arrived and it is back to the regular schedule.  The PFTs have slid a little which is not ideal as it is working against gravity to go back the other way.  This is my month on an extra neb which might help and we are going to try an oral antibiotic.

I have managed to gain a few pounds with the help of a new med.  I am not quite at the end goal but a positive in weight is always good.  It is likely one of the least talked about challenges.  I think it is almost physically impossible to eat the number of calories that my body requires to keep fighting germs and breathe.  I have one friend who lives by the nasty shakes and another who has a feeding tube despite her best efforts to gain weight.  I am not a fan of either of those options so we are sticking with the eat all the time plan.

I also managed a trip to the diabetes doctor on the same day.  My daughter kept the staff entertained in the hall while I got a flu shot and had my port flushed.  She was very excited to get to help get supplies out of the special closet and sit at the nurses' desk.

After an especially long visit, I was happy to head home again.  Our reward was a date for Chinese food.  Who can argue with that?  There must be some calories in the cream cheese puffs.

Blessings,

Cindy

Threads of Change

One of the few advantages of having CF is that you get the chance to hang out with really smart people a lot.  One of them shared with me that when her daughter went to kindergarten, she learned to quilt.  I thought that was a really great idea but wasn't sure where to begin.  So, this week, I visited the quilting circle at my church.  One of my friends is a regular and assured me that you only needed to know how to tie a knot.  When I explained that I was a kindergarten mom without a home, there was a collective sigh in the room and they took me in. 

One of the greatest prayers in action is sometimes just your presence.  I have the opportunity to help my grandparents on both sides later this week and early next week.  It comes with a lot of change but it is a great gift to be able to be there.  We are hoping for some good news and a smooth transition.  While I don't know how much help I can offer, I am really good at being present.  I know first hand the gift of having someone who adores you present when you are feeling a little nervous.

Last night, my darling husband joined me for the kindergarten parent night.  The thought crossed my mind to bolt from the room and declare that we aren't ready.  Well, that wouldn't really be true.  My daughter is very much ready.  It is her mom who is having a little trouble.  She is fond of telling me that it is okay because she will play with me after school.  I know it won't stay that way forever so I am trying to live it up and spend a little more time playing Barbies and making crafts.

So, this week, I encourage you to be present.  Hang out with the people who adore you and bask in a little bit of sunshine.  On that note, I need to get ready for school.

Blessings,

Cindy

Blink

So, have you ever been out and about doing what you normally do when you blink and things change?  I was out running errands this weekend and checking things off my list.  I was feeling pretty accomplished about the whole matter which speaks to my type A personality.  I was heading for the grocery store when I coughed and then coughed some more.  That was it.  I noticed my typical junk which is a sign of infection was complete with blood.  The first time was alarming enough.  Then, it happened again.  I asked about this very scenario a few months back and was told that the amount matters.  A little might be typical of a blood vessel that burst.  A lot is reason to call in the big guns.

While I was somewhere in the middle, I gave up on my adventure to the grocery store and headed for home.  My friend dropped off a book that she had finished for me last week.  It was rather timely as I took that is a sign that I should lay low.  Well, it wasn't really sign as much as it was a direction guided by my husband.  So, that is how I spent most of yesterday and today. 

This morning, I spent at the dentist.  The hygenist was telling me how her son is in my daughter's class and he was home with a fever on Friday.  She had to work on Monday so he went back to school.  So, it begins.  While it is really hot today, the germs of fall seem to be just around the corner.

The thing about CF is that sometimes you push it into the back of your mind.  Then, when you are going about your life, it reminds you that things aren't quite that simple.  So, you pack it in.  A trip to the grocery after the first treatment, lunch and another treatment, an outing to the library to meet your friends before the last treatment.  And, you remember that you shouldn't complain about the schedule.  You should just keep on day in and day out because you only need to blink before everything changes. 

So, a little more sleep, some extra nebs, and holding out before we call in the big guns.  After all, it could be nothing.  That would be ideal.  Or, it might be denial.

Blessings,

Cindy

Slow Flow

The first day of kindergarten has come and gone again.  I found solace in my friend's couch who reminded me that our children are in school every day.  I was apparently in denial about the whole deal.  My daughter did really well until it came time for my husband and I to leave her class.  The whole matter is a little hard on the heart and my generous husband drove my her to school for days two and three.  We haven't managed to brave the bus yet and don't plan to anytime soon.  After all, we get 23 more minutes of sleep which in our lives makes a big difference.

I have kept myself busy reorganizing things that likely don't really need to be organized.  I am waiting on the delivery of my new desk which I have great aspirations about the changes that a simple piece of furniture can make in one woman's life.  I have also managed to find my way back to the gym.  For weeks, I have had two daily goals and usually one or the other gets done but rarely both.  Yesterday, I crossed both of them off for the first time and I have to say it felt really good.

I am fortunate to have friends in life to tell me how it really is when I need a little help getting over the hill.  My wise friend counseled me that I really needed to just pull myself up by the boot straps.  She said it with love but the basic message was fake until you make it.  I have already had comments from people noticing some slight differences in my day to day happenings. 

A few weeks ago, I had the chance to talk with my friend who was really blue.  She had good reason to be.  Sometimes I think that when you are feeling that way, it is hard to find your way out by yourself.  I hope that I might have helped a little and I am very thankful for the friend who helped me realize it might help to do a few things different.

Of course, I am still working on my ability to say no.  I think what is more important is to say yes to the right things.  What do you really need to do today?  Of course, the answer is different for everyone.  I hope the women in my life will look at each other and realize that we need to support one another in whatever quest that might be for each of us.  So, if you need to say no today, just say it.  People will learn that you say yes to the really important things and that will make all the difference.

Until then, you can find me trying to find my groove at slow flow yoga.

Blessings,

Cindy

Sabbatical

My last post ended with us heading out of town.  The highlight of our trip was the chance for me to see Jen in live person.  While she has looked better, she is one tough cookie.  When I was leaving the big house, the lady at the welcome desk saw me looking a little blue.  She told me that her boyfriend had brought her chocolate covered strawberries and she didn't have the heart to tell him that she didn't like white chocolate so she offered one to me.  It is one thing to know that someone is sick and it is another to see it for yourself.  So, please keep praying.

When we got home, our friends from Seattle arrived for a week of fun and adventure.  Our visit didn't go quite the way I had planned it in my mind but it was such a delight to see them in person that it made my heart feel better.  After they were home again, my friend from Iowa and her darling kids arrived for the annual summer adventure at our house.  We worked on all sorts of fun projects while our kids had fun at Science Camp. 

After our company, I have been busy getting ready to call a new Senior Pastor at our church.  While we have been working on this project for close to a year, the final details are coming together.  Our congregation plans to vote this week right after the service where my daughter will receive the kindergarten blessing.  I am hopeful that I will be done crying by the time I am supposed to address the congregation.

Yesterday, we went to meet my daughter's new teacher.  We were walking into school and my daughter said, "I love you, Mommy."  She must have caught on to my sense of dread that I have been trying to hide.  When we are done, I asked her what she thought and she said, "I love her."  So, I think my worries will subside although we are still having bus negotiations.

Well, I have had a brief sabbatical from writing during our summer adventures.  My hope is to spend more time working on my next big project, my Grandma's book, after school starts.  She has her work on it done but I don't have all of mine done yet. 

My friend recently sent me a reading about modeling for our children.  It reminded me that I need to practice rest and take care of myself a little more often in hopes that my daughter will learn to do the same.

Until then, I hope you can find me at the gym, quilting with my friends at church, reading in my hammock, or just taking life at a little different pace.  You will also find me eating all the time as a new med has me hungry in the middle of the night.

Blessings,

Cindy

Run, Rest, Run, Rest

In recent weeks, my family has taken to try running with me.  It started with my husband going along to carry me home.  It usually ends with some oxygen and a nap.  However, my daughter thinks it is great.  I am looking forward to getting back on a regular exercise routine.  We are starting a few houses at a time as I barely make it as far as my favorite garden down the road.  However, it all counts.

Things are going well today which has me a little nervous.  I can see the light on some of my commitments and am excited about the possibilities.  I also gave in and called my cleaning lady to come and help me.  She has been absent for a few months and I have come to be a little wiser. 

My daughter went with me to the U this afternoon to flush my port and hold my hand so I wouldn't be scared.  I asked her if she was going to be a Pastor and help make people feel better.  We had an interesting discussion about the difference between a Pastor and a Doctor.  I tried to explain that one worked on your body and the other worked on your heart.

After coming home to a clean house, I got really exciting news!  I get to visit my friend, Jen, who is still hanging out in ICU.  Of course, I get to wear the fancy mask but it is so much more fun than stalking her from the window.  I didn't think that it would be ideal so I asked her to check with her team.  I can hardly wait!

Tomorrow, I plan to be on my way to see my darling nephews and Jen along with our extended family in Indiana.  Then, we are off to my daughter's adoption reunion in Kentucky.  A lot of people wonder about how we stay connected despite being across the country.  There are not a lot of friends that you can say sat with you when you couldn't go any further at the Great Wall of China or stood with you in alphabetical order awaiting your darling daughters.  It is an annual gift to be together again and to witness our daughters' friendship.

Now, if I could just help my Grandpa feel better, that would be great.  He had a fall this week and it is fair to say that he lost the fight.  I do feel a little better after seeing him for myself.  My mom told me that he told her not to call me.  I think it is funny that he thought he could really get away with that.  During my visit to him, I also got to see one of my favorite people who gave up smoking after years and years of cigarettes.  It was such a gift to hug him and not smell smoke.  I am very proud of him.

Blessings,

Cindy

Love all the people

Well, I have only had one call about my missing blog updates so I think it is fair to say that my readership has fallen off.  Word spread of my summertime blues and my nieces took turns visiting.  So, I spent most of June basking in the glory of little girls and all the fun that comes with them.  My daughter loves and adores her cousins.  Her only complaint about their visit is that they have to go home again.
It must have worked because my PFTs went up to a point they haven't seen since last September.  Of course, I could use a few more pounds and I am still eligible for a handicap parking sticker but I will take any lung function that comes my way. 

This week started out rough as one of my friends with CF passed away unexpectedly.  She lived just down the road and we shared the same great home health care nurses and team at the U.  I went to her memorial service on Monday.  I had never met her family but discussed all sorts of things with her.  So, I was very relived and grateful to see some of my team there.  I sat with many of them and continue to be really grateful for all of their hard work.  I can imagine that their work is hard on most days but one memorial service was plenty for me.  The only part that really makes me feel better about my friend's passing is that she went out her way in celebration of her life and with her family who she adored.

A number of you have asked about my friend in Indy and she continues to be in ICU but took her first walk down the halls this week.  Please continue to pray for her lungs to cooperate as she is going through pulmonary rehab and continues to fight off rejection.

I am especially thankful for a number of people this week.  One read my post requesting prayers for my friend's family and immediately called me.  Another covered my mom duty and took my daughter out to lunch so I could attend my friend's service.  Another friend called on what is typically Doctor Day to make sure that I had coverage for my daughter.  Another watched my daughter while I helped a friend who was having a rough day.  Another spent time eating fries with me and reminding me why we are friends.

Recently, I had a great conversation with one of my friends about what it means to be a Christian.  I believe God loves all the people.  I also believe that we are all walking this path together and that we can use all the help we can get.  The road gets rough for everyone and sometimes the burden is too heavy to carry alone.  I spent time with one of my friends this week that reminded me how a call or a text go a long way when you just need to know someone is thinking about you and you are not on the road alone. 

I am proud to be one of those friends that you can call in the night.  I am glad to be one of the friends who will knock on the door when you don't answer the phone.  I am thankful that God has blessed me with friends who will do the same.

Blessings,

Cindy

Share

I think it is fair to say that I have a case of the summertime blues.  On the one hand, it is summer and how can you argue with that?  On the other hand, I am tired and it shows.  I am more mentally tired than physically tired.  I am tired of trying to make decisions.  I am tired of unhappy people.  I am tired of the search for a new Pastor.  I am just tired.  I am overextended.  It is funny how it feels better to say it out loud and admit what others have already figured out.

I want to spend the sunny summer months having fun with my daughter, reading in my hammock, and swimming at the pool.  Of course, I still need to order my hammock and it is raining today.  I don't think my underlying PFTs scores are helping my cause at all.  I should be on IVs but we tried that route and agreed to a break.  I think knowing about my scores lays an underlying sense of worry below the surface.  I also wish that my friends who are so smart and understand me so well all lived down the hall.  There are some benefits to the college life which I keep trying to explain to my daughter who is still "considering" whether or not to start kindergarten.

So, today, I want to give a shout out to some people who are really good at sharing.  My mom has been sharing her days off work to help me carry out some of my overextended duties.  My friend saw my look of dread yesterday and fed me cheesecake to soothe my soul.  Another friend assured me that it really is fine not to do it all and just let it be.  My neighbor shared her darling daughter with my family yesterday resulting in lots of fun and laughter.  My daughter adores her daughter and takes it quite seriously that she needs to teach her important things like how to play Pop the Pig.

Over the weekend, I had the good fortune to see all of my living grandparents.  One didn't know I was coming and was so excited to see me.  The others anticipated my arrival for a birthday celebration and quickly spread the word.  I really appreciate how you can just be yourself and they are delighted.  It is a great gift.  They expect nothing from me other than as many hugs as they can fit in one visit.  Who doesn't need some more of that in their life?

Blessings,

Cindy

Doctor Day

Well, doctor day came and went two weeks ago.  I am a little behind on my updates which is intentional on my part.  Again, I failed the lovely PFT tests.  Of course, I was a little frazzled and stuck in traffic before I attempted the test.  I can't say that resulted in my ugly scores.  However, we determined that I felt pretty good and I looked good so we would wait and see.  So, I set about trying to have some fun and living large until next time.

I had a really fun weekend with two of my darling nieces.  I am amazed how well they get along with my daughter and how long it is possible to play Polly Pockets.  We also managed to play at the waterpark, play mini golf, watch my husband's race, and take a trip to the zoo.  It reminds me that I need to plan a lot more fun in between the not so fun parts.  My youngest niece was worried that she didn't want to get me sick.  I think it is a sign that we might discuss my health a little too much when even the three year old is worried.

This brings up the complicated issue of germs and how to avoid them.  One of my very favorite people ended up in an ambulance last week with pneumonia.  It is not my gift to keep my distance and not really be able to help.  So, when another of my favorite people got sick with the junk this week, I again kept my distance.  Of course, my Grandma told me very directly to "stay away from him." 

I was also exposed to some germs that I wasn't aware of this week.  If you come to visit with germs that are not medicated, you should be advised that my husband really will make you leave.  He will be nice about it but firm.  So, please use common sense and stay home if you are sick.  My Pastor called me last night to cancel a meeting with me as she is on her third antibiotic and didn't want to risk it. 

So, we have one day of school left and then we are going to set out to have fun and stay as healthy as possible.  Our garden adventures could also use some love.  I think our house might possibly be overrun by the raspberry bushes.

Blessings,

Cindy

Sell, sell, sell

In the past few weeks, we have been busy wrapping up fun activities for the academic year.  We had dance recital last week and are officially back in "retirement".  My husband has started his racing season and is not in retirement. 

Last week, my daughter got a great package of magazines from her great aunt.  You can't imagine how excited one girl can get over mail.  Well, we might have mentioned it.  Mail is still one of the best ways to put your prayers into action.

We had some great news about the summer schedule.  My mom is going back to working four days a week in the summer which gives us a day to play with Grandma.  Most of the time, we schedule appointments around her schedule and have some extra help.  Either way, it was very exciting news!

In other news, we are heading to plant the garden with our friends in the morning.  In the afternoon, we will be helping my mom with her garage sale to raise money for the Cystic Fibrosis Foundation.  Her friends and some family donated "treasures" to be added to her own treasures.  My daughter gained even more sale experience working the cashier table last year with her lady friends at church.  Whenever someone made a sale, she would say really loudly, "Thanks for coming!"  Our experience was the same at the food shelf this week as we sorted food.  For some reason, people remember me but I think it is more about my assistant.  I am sending her to help Grandma again on Friday and see if she can help increase sales.

Blessings,

Cindy

Doctor Day

My daughter and I spent last Friday at the U.  She wore her pink tiara so we were easy to spot.  The PFTs went up slightly and my weight is stable although a little too light.  So, we made the decision to give it a go to be IV free.  I had to finish up what I had left which kept it going through Saturday.

On Sunday, I had to drop off my daughter and her friend at a Princess party.  When I got back home, the nurse was waiting to deaccess my port.  I guess it is actually ports since I have two.  I am officially free of sleeping with my IV pump and have no tubes.  Yesterday, I got to take my first shower without plastic on my arm.  Of course, we can always change our minds and hook it all back up.  However, I will take what I can get.

So, now it is back to fun exercise and lots of eating.  My daughter has big plans for me at the swimming pool.  We also have a garden to plant and are working on our list of more fun.  You know it has been a long run when your friends and family are just as excited to take a break.

Blessings,

Cindy

Read the Label

My restart of my IV was a little interesting since I got the two mixed up.  One used to be three times a day and the other twice a day before we switched to the 24 hour system.  So, I restarted at three times a day which was fine until I ran out of medicine.  When I called my home care team, they couldn't understand why I could be out of medicine.  Well, I failed to read the label and was only supposed to be taking it twice a day.  It might account for the weird symptoms and waking up a lot.  Of course, it took us a little bit to figure this all out.

When we switched to the right schedule, my drug level was still high in my system.  So, now we are down to one 24 hours a day and the other once a day.  It has been working pretty well except for a spell trying to access my port.  Apparently, it is better for me to lay down on the couch and not try to sit at the table.

I have also been trying to have a little fun.  My friend brought home a new baby a few weeks ago and I was planning to deliver her dinner.  Of course, I tend to plan a little too much in a short amount of time.  So, my aunt helped my daughter make dinner and gave me a chance to look a little more presentable.  Last week, she was back with my mom, my cousin and his family, and my sister and her cute girls.  One of my nieces loves to have dance parties in my basement and encouraged all of us to do the same.  It was really fun and it just isn't every day that you can get your relatives to dance to the Jackson Five.

This week, I have had some great last minute help from my mom, one of my friends who took my daughter to the library, and my other friend and her husband who make sure she feels right at home at their house.  Today, we are heading to the U and don't suspect to get done after a two week run.  However, it doesn't hurt to dream...

Blessings,

Cindy

Doctor Day

In the past few weeks, I have gotten a lot of fun deliveries. One included balloons which had already been blown up for my daughter. Another included an assortment of cookies, bars, and cakes individually wrapped and carrying a lot of calories. Another contained a thing to heat up and put on my neck. They are all really fun and have my daughter asking every day if she got any mail.

I have been busy making fun plans for when I get rid of my 24 hour IV. They include some dancing, some travel, a few freezer meal cooking sessions, a garage sale, a birthday celebration for my niece, interviews for a new Pastor, etc. I am really good at making plans. On Thursday, I went to visit my friend and told her, "Life is what happens when you are busy making plans."

Those words caught up to me on Doctor Day. I still have my 24 hour IV. It wouldn't be so bad except that I really thought it was going to be done. My nurse had been to visit in the morning and she thought it was going to be done too. My daughter went along to PFTs and did her best to cheer for me to blow harder. We literally shut down the clinic for the day. She asked the man cleaning the lobby not to lock us in here.

The new plan is to restart the second antibiotic that I was previously on and continue the 24 hour one. It starts the count over at a minimum of three weeks. Can I just say that swimsuit season is upon us? On our way home, my daughter and I stopped for some Chinese food. I think cream cheese puffs at least make things seem better.

Blessings,

Cindy

My new friend

My friend and her daughter spent the night so my daughter could go to the zoo yesterday while I was busy at my "meeting." It was a really great example of prayers in action. When I was trying to figure out how to drop her off early in the morning, my friend said, "We can just stay over."

My husband and I left for the U and my visit to my friends in Radiology. He waited and stayed with me until they were ready for me. We got to see the port that it is now in my arm. I had only seen a picture of it and was happy to find it was a little smaller than I thought it would be.

I did really well until they announced my name and procedure in the OR. Then, my friend, Fran, who was in charge of the good medicine made me go to sleep. Apparently, I can still respond and do what they tell me to do but I have no memory of it. Well, I have a little memory when it started to wear off.

It was supposed to take about an hour for my procedure and it took two. Of course, my friendly veins didn't cooperate very well. First, they took out my picc line. Then, they set out to put in a double port. (Most ports have one point of entry but I have two.) Well, that didn't work. I woke up when they were discussing whether or not to put in a single and calling another doctor. In the end, I woke up with a double but it is smaller than a regular one so I can't put dye in it for certain procedures. Other than that, I should be good to go.

My arm is very black and blue so I am keeping it covered. My daughter, of course, caught on because my clamp is a different color. I told her the other day that God made her perfect. She made a funny face and said, "God didn't make you perfect because look" as she pointed to my IV. Then, she added, "Don't worry. You're still beautiful." I guess it is all in your perspective.

I was hoping to be liberated of my 24 hour IV yesterday but it is going to keep going until I am seen in clinic next week.

When I got home, my dinner was waiting from my friends in the fridge. One of my other friends is cooking dinner tonight. I am very thankful for great help and lots of prayers. I am also really glad we can check my port off the list of new experiences and not have to worry about it anymore.

Blessings,

Cindy

Please don't be mad...

Please don't be mad was the subject line of my friend's email. She had arranged a few meals for me next week. In her email, she explained that she was telling me, not asking me. I thought it was really funny since I can't say that I have ever been mad at her. Apparently, there is this notion that I don't accept help very well.

This week, I was struggling to say no to something that I really want to do. When I told my friend about it, she replied, "You are not doing that." Of course, she is right. Although, I hate to admit it.

I was hoping to be liberated of my 24 hour pump today but we are going to keep it going a few more days and maybe stop it at the end of next week. I am going to get my port placed on Thursday so we can check that off the list of new experiences. My darling husband and friends have it all worked out. So, I just have to show up at the appropriate time. I confirmed the order for sedation so I can rest better now. One of the nurses didn't think that I needed sedation to which my doctor replied, "She needs sedation." Can I just say that I really appreciate him even when I really don't like his plans for me?

Today, I am thankful for my cleaning lady who came to visit today. I am also thankful for my friends who arranged a fun lunch outing and visit from the other side of town. I am thankful for all the cooks in my life and two weeks of spring break from Chinese school on Saturday to hang out with my husband and my daughter.

Blessings,

Cindy

Doctor Day

Doctor day didn't start as planned. Grandma was in charge of my darling daughter for the day but it just wasn't working out for all of us. So, the three of us headed to the U with one of us in our pajamas. You can guess which one was in her pjs.

So, the two pounds we gained last time left again. Really annoying...enough said.

The lung function went up slightly so the trend is in the right direction. We decided to stop one drug and give my kidneys a break. It also puts an end to the pre/post weekly blood draw visits from my nurse to check my drug levels.

The other drug is thought to work better over a longer time period so we went from 3 times a day over 2 hours each to 24 hours a day at the same dosage. So, you will now see me carrying a fancy black bag with an IV and pump hiding inside. While the bag is a drag, I am looking forward to getting more sleep and being able to go to bed earlier.

The next adventure is getting scheduled for a port. Most people have them in their upper chest but that doesn't work for me due to my vest. I had just resigned myself to one in my arm which would eliminate my need for going to visit radiology to get picc lines. The port can just stay in when it isn't being used. I am signed up to get a double port instead of a single so I can run multiple drugs at the same time. I feel pretty good considering I sound terrible when you read all of this.

On another note, I have a prayer request. My friend, Jen, is being treated for rejection over the next few days from her lungs. She had a transplant a couple of years ago and is facing some complications. Please pray, pray, pray.

Blessings,

Cindy

Bring me along

So, last week, the nurse came to visit and it was the first time in 2012 that someone thought my lungs actually sounded pretty good. Of course, the box tells the tale so we will try again next week but a girl can hope. The picc line is really bringing down my wardrobe options in this great weather.

I also managed to get my hair cut and my stylist solved my latest life dilemna. It is funny how she is supposed to just cut my hair but is very willing to tell you what she really thinks. Of course, she has been along for the ride and cut my hair off on several occassions when I didn't feel so good so she knows a little more than she should.

On Friday, my darling nephews and their parents arrived from Indiana. Their parents went to see some friends so we were able to hang out and get caught up. I haven't laughed that much in a very long time. My youngest nephew also brought along a host of electronic devices that he taught me how to use. I need someone to bring me along. I asked how to make the screen smaller and my daughter walked over and said, "You just pinch it Mommy." Apparently, my five year old has surpassed my skill level which I thought was at least decent.

Today finds us with no company and yummy leftovers that my sister-in-law left behind for us. I am hoping to get a little motivated and find the bottom of my laundry basket along with a number of household chores. I am very much looking forward to spring break this week and planning to have a little fun. We already made it to the Grossology exhibit at the Children's Museum so we can check that off.

Blessings,

Cindy

Doctor Day

Last week, I had the good fortune to go the Doctor with one of my friends. I thought she was a little crazy leaving her two cute kids behind to ride along to the U but I didn't argue. We started our journey by meeting up at our local makeup store to leave a car. We both ended up with new makeup that we will likely hardly ever use. I have this theory that if you fake it a little better, the general population will at least think that you feel good.

We spent most of our time catching up on life which is kind of funny since we see each other multiple times a week at school, church, lunch, and so on. However, we almost always have very talkative kids wiht us so we rarely finish a conversation unless they happen to be busy practicing their choir songs. I determined that my friend must be some sort of good luck charm.

The ugly graph is still ugly but positive rather than negative. When I asked how much longer we would continue all this fun, my doctor simply responded, "a long time." Well, that isn't very encouraging. I must have made a bad face or something because he said we would see again in two weeks. I also managed to gain two pounds which is on track with what a CF patient can be expected to gain in a two week period.

In the end, we determined that maybe I just needed summer to roll around again. I did manage to get to the park twice this weekend and ride my bike which was super exciting! We are looking forward to spring break next week! I am not looking forward to next year when we have school five days a week. Sigh.

Blessings,

Cindy

Call

We are working week 9 on IVs and I have to say the routine gets old really fast. I have a pretty good attitude for the first few weeks but by this point, it has faded. I was in an awkward conversation this week about how much time I had left on IVs. Well, if I knew, I could put that on my giant calendar and plan accordingly. People have good intentions but when you start explaining things that aren't really so inspiring, the conversation wraps up quickly.

My family just left for the grocery so it is really quiet at our house aside from my dog barking. We had steak for dinner and you would have thought he was trying to save us or just get some for himself. I told my daughter to help her dad pick things out at the store and she replied, "Well, he can read." I guess she has a point. We spent part of the day with the princesses at Disney on Ice. My clothes tell the story as they are full of glitter.

I have a date this evening with my couch which is really exciting. My cousin was driving through my part of town and called on his way home. It is a good reminder to me to call more often and vice versa. I used to be a really good phone talker but my schedule now cuts into my time on the phone. Although, my sister has adapted and talks over the noise of my vest (at least the slower settings).

We went to look at a model home yesterday just for fun with our friends. Of course, it was goregous except the garage was a little small. It reminds me how life looks with no piles of highly important papers, art work, or dirty dishes. I am curious if anyone's house really looks like that.

Blessings,

Cindy

Doctor Day

Friday had me feeling a little beat up by CF. I can't begin to tell you how annoying it is to blow in the magic box and have scores that do not at all reflect the amount of work it takes to maintain some sort of lung function. I am about 10 days into my new run of IVs and the scores are virtually the same. So, what does that mean?

I don't know exactly. We have at least two weeks to go and then we will try again. So, my next adventure is counting calories and continuing my IV schedule while trying to lead a life which is a little more dull. That actually sounds good about now. We had some discussion as to what might help...grocery delivery, fewer distractions, my former administrative assistant, etc.

This was the first day for our new nanny which is super exciting for both me and my darling daughter. She loves her and was not at all phased by my leaving her for the U. For those of you who know her, this is a major accomplishment in our lives. My friend talked to me on my drive and reassured me that it would really be fine and she was five now so it was probably time to let someone else watch her. Our nanny is just helping us out a couple times a month but I am hoping it works out for all of us. I owe credit to my other friend who did all the interviews and sent her to me pre-approved.

I also managed to lose a pound along the way so my latest project is a recipe ring on my fridge to keep the calories coming...

Blessings,

Cindy

The Power of Friends

When God called my cousin's son home last week, the women took action. I called my friend and said, "Can you come?" She said, "When do you need me?" I said, "Right now." "Okay, I am on my way."

A few days later when my help was needed, I called another friend and said, "Can you come?" She said, "What time?" I said, "As soon as you can." "Okay, I am on the way."

By Friday, when I had things to do that didn't include Beauty and the Beast with my daughter and her friends, another friend said, "Can I come and pick her up?" When my daughter hesitated, she picked her up and offered her security and a fun afternoon.

On Friday night, I started to worry about bringing my daughter and some her cousins to the visitation and service. I called another friend and said, "Can you come tomorrow?" She said, "Sure, what time do you need me?"

I think it is a little too easy to be sad and blue. Then, God sends a few angels to handle things and you see the power of friends. My friends, both far and near, are really amazing. They call, they text, they send mail, and most of all, they worry.

When my daughter's birthday arrived this week, I was far from ready for her party or her princess friends to arrive. With the help of my sister, my mom (the Fairy Godmother), and a few friends, it was all handled.

On Monday, I went back to the U and saw another doctor. The test scores are just ugly. He wanted to know what I was doing this week. I said, "I am having a princess party."

So, after some discussion, about what to do with me, we decided to restart IVs and try a new antibiotic and restart one of the old ones. We would be doing one 24 hours a day except that I declined the double line so I only have one line. So, the schedule is one three times a day and one twice a day for a total of 8 hours for at least the next three weeks. I knew things must look tough when my nurse offered to hang around yesterday so I could take a quick shower. I really think there are angels among us.

Blessings,

Cindy

Sad Days

At the diabetes doctor, I learned about a new study which further explains my probelm. She said the study shows that when your blood sugar is higher than 144, it helps the bacteria in your lungs grow. She basically described it as candy for the germs. So, we are going to do a lot more checking of blood sugars and take a look at the long acting insulin dose as well as add in some fast acting insulin before meals. It means a lot more finger pokes and insulin shots which is fine when your fingers toughen up.

On another note, the PFTs didn't turn out as well as I hoped. They were lower than last week but not quite as low as the time before that so we had a choice. The office paged my doctor and he said we could either start the new antibiotic and the count for at least three weeks or take a few days off the whole routine and check again next week. Since I am feeling pretty good, we decided to give it a few days. So, I did the last IV last night and am going to just maintain my line until we make a decision about next steps.

On the way home, my mom called with that sad news that my cousin's baby had passed away unexpectedly. He was just over three months old. So, some of the things planned for this week got shuffled so we can help out my cousin and his wife who live close to us. This is a great example of living close to your support system. A number of friends have agreed to help cook over the coming weeks so they have dinner. I think food and prayer are two of the best ways to help people when you just really don't know what else to do. I know Grant's family appreciates it very much.

Blessings,

Cindy

Share your Mom

A few weeks ago, my mom and my friend's mom got talking about how I wanted to reorganize my kitchen. I had a few other things going on but my mom gave my number to my friend's mom who has excellent organizational gifts. It is funny how my messy kitchen didn't bother me at all until I was home a lot more often and had to face it every day.

Last Sunday, my husband and daughter loaded up to go visit my mom and my daughter's kitty, Spot, who lives at the farm with Grandma. Apparently, Spot's friend, Macy, got married in the night but didn't invite Grandma. I asked my daughter who Macy married and she looked at me like it was so obvious and replied, "Scaredy Cat."


Then, my friend's mom arrived and the kitchen purge was under way. It is entertaining to me how I think it is fine to mix my office supplies with my extra serving dishes. Apparently, that isn't how you are supposed to do things. Well, my friend's mom has it looking so good that it is kind of hard to believe that it is the same kitchen.

I have been very fortunate to have a lot of good help lately. My mom fed my family lunch so they would be busy during our kitchen project. My friend reassured me today that I really could miss a volunteer commitment and it would work out fine. She also offered to help me with my upcoming princess party. Another friend showed up for lunch with a pumpkin roll. It is delicious and must be full of calories. I think that I was supposed to share it with my family but I have managed to eat most of it myself.

Yesterday, the U called to check in on me. It is never a good sign when they are calling you rather than the other way around. My culture came back with another antibiotic choice which is good from a germ perspective. It is not as exciting if you are hoping to be liberated of IVs as the count starts over when you make a change so we woulld be looking at three more weeks. In the end, we decided to go do PFTs next week after I visit the Diabetes doctor and made a decision based on the numbers.

On another fun note, I was all excited about having all the balls in the air on my last doctor visit. My doctor advised me that I should be working out five times a week for thirty minutes. I thought twenty minutes was great. I should also be mixing it up which is easy in the summer but more difficult in the winter and with a picc line. So, this week, the treadmills were full at my second gym. I took that as a sign to try the recumbent bike. It only took me five minutes to check if it was time to pick my daughter up yet. Apparently, I have more work to do.

Blessings,

Cindy

Breaking News

As a kid, I grew up on a farm next door to my grandparents. My Grandpa was fond of listening to Paul Harvey tell "the rest of the story" while he waited for lunch. Well, this is the rest of the story tied in with a little breaking news.

Days before my 35th birthday, I went for a second opinion about my current lung infection. I was 7 weeks into a rough run of IVs after a nasty blood clot and my doctor thought his colleague might have some ideas. When I was working at the U, news broke of a new drug, VX-770, that could cure the underlying problem of CF for a small set of patients. Most people, like me, have the Delta 508 version of the gene mutation which needs another drug in development, VX-809. The point is that upon hearing about VX-770 for the first time, I believed that there really might be a magic cure waiting in the wings. Well, my 2nd opinion led me down a road that I was not prepared for at all. It was suggested that I should start to think about a lung transplant since the drugs, if approved, would likely help people with much less lung damage than me. I wasn't too worried about it and thought maybe he was just overprotective but agreed to another meeting to learn more about my options.

So, another week passed and I went to see my doctor who I fully expected to tell me that I didn't really need to worry about a transplant, at least not right now. When he agreed, well, I just cried. I couldn't really ask any questions or formulate any actual thoughts. My friends at the U tried to tell me that my reaction was typical. I tried to just bite my lip and get through Thanksgiving and my husband's 40th birthday. I didn't get a lot of sleep in December but did manage to schedule a meeting with the transplant doctor that my husband and I could both attend. As it turned out, it was two days before Christmas.

I eventually told three of my friends via email who see me on a day to day basis because I was not managing so well and it was a little obvious. Another friend caught on and little by little, other people figured it out. I wasn't really able to talk about it in person so I didn't really "tell" anyone. I still won't talk about it if my daughter's ears are listening. I also didn't want anyone else's opinion to influence my decision.

In the end, we decided to go ahead and do all of the tests required for a transplant as a back up plan so to speak. I will likely have a transplant at some point but I am in no hurry. The tests typically take a full week so it is better to do them when you are feeling good and can qualify than wait until you are really sick.

My doctor thought it was best for me to spread out all the tests so I wouldn't end up on IVs when it was all done. So, after lots of visits to the U in February and March last year, I was officially done. Then, the transplant team gets together and presents you and all your test scores. You get assigned a score out of 100 points which determines what number you are on the transplant list for your blood type. I got approved and had the option to go active although I would be lower on the list at this point. I choose to hold off for now and try to maintain as much lung function as possible for as long as possible.

My friend just celebrated her two year transplant anniversary and she gave me some good advice on the whole matter. She also knows me well enough and vice versa that I can ask her anything that I want and she will give it to me straight. A number of people have wondered out loud why I don't just go ahead and do it now. Well, there are a number of reasons besides the three month recovery period. Also, if you ever sit in a meeting with the surgeon explaining what they will do, you will find you have no desire to be in any rush. Of course, you also don't want to wait too long so it is complicated.

In today's paper, the headline reads, "FDA OKs a Vertex drug to treat cystic fibrosis." Can I just say that is totally amazing? It is for VX-770 and will help about 4% of patients with cystic fibrosis but puts the other drugs that much closer in the pipeline. So, today, I am asking everyone to make a donation in whatever amount you can afford to the Cystic Fibrosis Foundation. They had the vision for this day and the work isn't done just yet. I promise to host the party when the work is done.

Blessings,

Cindy

Doctor Day

Well, we made it through Kindergarten round up with no tears. I am really quite proud of this fact. Now, we are on to our next adventure of the week to celebrate Chinese New Year tomorrow. My daughter has her first speaking role on stage so it should be very interesting.

My mom asked me earlier this week if I had been to the doctor this week. I confirmed that I had not and had not last week either. I didn't offer up that I was going there today as it only adds to my anxiety about the whole situation. People are really good about asking me to call them after the doctor but the truth is that I just want to go home and strap my vest back on. When it is a bad day, the last thing I want to do is repeat all the details. The call to my husband is enough for me. On the rare day that we have good news, I like to just relish in it for a little while.

My friend who has taken over watching my daughter since my other two friends moved is living the good life in FL today. She realized that she would be out of town and arranged for our other friend to cover for her. Before I knew about it, they had all the details worked out and I had a day at the U on my own which is a little easier for me. I have been having some sinus problems this week so we took the day off from school on Wednesday and laid low. My nurse told me yesterday not to get my hopes up which didn't seem like a really good sign.

Well, the good news of the day is that the graph is back at the numbers when I got out of the big house but still has to keep going up. So, we have two more weeks of IVs. We are going to decrease the Tobi a little since my blood tests are coming back a little high and my kidneys are getting a little tired of it. My last culture showed three kinds of pseudomonas and two of them should be handled by the combo of IVs that I am using now. The third one is resistant so we just have to will it away.

The bad news of the day is that I lost three pounds in the past two weeks for no apparent reason. So, we are back to the food diary and the eat all the time plan. I am also going to learn to use my bullet and add morning shakes to the routine. I think that is the only way possible to get in the number of calories that I need to get my weight to cooperate. I also met with my dietician today who found that both my vitamin A and D levels are low despite high doses of vitamins. So, we are going to add some more vitamins and reinstate my inhaler that was put on hold at the big house. My potassium level is still on the low side but getting better so we will continue with the ugly potassium pills.

By the end of my visit, I was ready to go home. I had to get some blood drawn for my research study. (I really think they keep it in a vault in the basement or something.) I went by the cafeteria to grab some lunch and ran into an old colleauge. I have been around the U for most of my 36 years so it isn't uncommon to run into someone that I know. I just prefer not to run into them with my IV connected and carrying around various medical deliveries.

So, today, I am thankful for the very busy valet that brought me my car so I didn't have to go out in the sleet. I am also thankful to my sister who helped me find the way to my daughter's play date when I made a wrong turn and was very lost. I am especially grateful to my fabulous friends who are so helpful and make a long day go a lot smoother for me. Please feel free to send your favorite recipes as we have a fun new project underway...more to come.

Blessings,

Cindy

Care Packages

One of my favorite parts about college was getting care packages in the mail. Of course, I really made it clear to everyone that I liked to get mail. I have gotten a lot of fun things in the mail, for example, a homemade cake, a foot stool, carmel popcorn, and the list goes on. Well, at the end of last week, a package arrived from Kohl's. I am not much of an online shopper so I was curious about it. My friend had a bunch of coloring books and a stamp set sent to us. It was a really fun idea and my daughter thought it was great!

So, the next day, my husband comes in with another package. He wanted to know what I had ordered this time. (Disclaimer: I am partial to ordering books online.) Again, I claimed innocence. My same friend had another package sent with this really great poncho sweater with an attached scarf. Can I just say that it is darling? I wore it on both my mystery date and my advenure with friends to see a Chinese dance show. I like to plan mystery dates which usually include tickets to some cultural event that my husband would never agree to on his own accord. This time, it worked out really well for us except our daughter fell asleep during the second half of the concert. I am still hearing about our mystery date to the ballet years ago. I have to admit he was right on that one.

It doesn't take a lot to send a care package. It can be anything really. I have two packages sitting on my desk waiting for a trip to the post office. I just think it is fun to send mail and fun to get mail. I can't recall if I mentioned my friend's package of gingerbread cookies. They came from Seattle with a note that simply read, "Some calories for you!"

Tomorrow, we are heading to kindergarten round up so you might avoid calling me. I didn't handle preschool so well and I imagine this will be worse. Feel free to pray for us.

Blessings,

Cindy

Motherhood

After eating the delicious meatballs that my aunt brought for dinner, I was getting ready for the last IV of the day when I realized that I didn't buy mozzarella cheese. This might not seem like a big deal unless it is 10 o'clock on the coldest day of the year and the cheese is for your daughter's slumber party at school. I only share this story with my readers for your own amusement and it should be no reflection on my actual abilities.

So, this morning, things got off to a rough start. I had managed to wake up at 6 without my husband's help since he was waking up in Indiana today. I hooked up my IV and went back to bed. When I got up again to shut it off, I realized that I never opened the clamp on my picc line so nothing had happened. This is not only really annoying but they are on a strict schedule which was now way off. It also meant that I had to open the clamp and tote my IV along to drop off my daughter at school. I had managed to arrange my schedule to avoid this so far and my cape helped hide the obvious. Of course, no one really cares but I prefer not to be the "sick" mom at school especially.

After convincing my daughter that she could wear leggings to school so she wouldn't freeze and change back into her pajama pants, we were off to the grocery store. I managed to pick up a paper and thought things were looking up until I went to pay for it and found that I left my debit card at home and had $2 cash in my wallet. I really need to visit the bank. So, my daughter agreed to bag the groceries and the check out lady agreed to make sure that she stayed there while I ran out to the car in the snow to get the checkbook.

Again, we were on our way to school. When we got to school, my friend saw me struggling to carry in all of the slumber party supplies and trying not to tangle up my IV. We had the needed blanket, pillow, robe, slippers, flashlight, stuffed dolphin, and of course, the cheese for the pizzas for snack. She offered to help and things were looking good until I realized that I did not have the pajama pants. Defeat. After convincing my daughter that she could really go into class in her leggings, I drove home. My friend followed me and picked up the pajama pants and took them back to school for me. I already owe her so many favors that I can't even keep track but it was a really great gift as I would have never heard the end of it. It also allowed me enough time to wash my hair between IVs and treatments which was really my only goal for the day.

As of this post, I am waiting for the nurse to arrive and draw my blood. She will come back after my next IV in about two hours to draw my blood again and change my dressing. It is right up there with clean hair and a little too exciting. My nurses think it is a little funny that I make a point to look out the window and ensure that I have no idea what they are doing or any of the sordid details. The doorbell is ringing...

Blessings,

Cindy

Take Care of My People

Last fall, I decided that I thought my grandparents needed a little more help. Of course, they didn't think so and I wasn't in a very good position to be more available. So, I called my aunt and told her what I thought. She told me that they didn't really want more help. I told her she could just use my name in vain and say that I made her do it.

So, last week, she rearranged her schedule to take my Grandpa to see his new cardiologist. I was dating my husband when my Grandpa had his first heart attack and he drove me to the airport to catch the first plan from Indy to Fargo. I have no interest in reliving that experience. So, I have a very vested interest in making sure that my charming Grandpa's ticker keeps up with him. The cardiologist made some plans for him that he is not at all excited about but he is going to go anyway. I told him it was okay to say that his bossy granddaughter made him do it.

The point is that sometimes you aren't in a position to help people the way that you really want to so you have to improvise. I am very thankful for my aunt who not only goes to the doctor with my grandparents but also calls me to reassure me that she went along and has the plan for their long, healthy life under control. Sometimes the best way to help someone is to help their people.

I have another favorite relative who has been sick this winter and not able to travel. I can tell that it is making her crazy as she keeps sending me email to make sure that I am still ticking. She is among my most faithful fans. One of the best ways to help is also to just take care of yourself and your body. I am really good about worrying about other people so this gives me a little less reason to worry.

Today I am thankful for my friends who indulged my request to get a pedicure yesterday. A little self care goes a long way in feeling better about life. I am also thankful to my aunt who brought my grandparents to visit for lunch today and encouraged my cousin's wife to bring her cute baby too. I told her that holding him is a lot like therapy without having to leave the house. My husband is traveling today so I am thankful for all the distractions that will keep us busy until my daughter realizes that Dad won't be home for dinner. I have managed so far to save that news for later. Lastly, I am thankful for my daughter's insistence about signing up for ice skating lessons. It really was a lot of fun to watch and we are still working on having more fun.

Blessings,

Cindy

Doctor Day

I should have posted this a little sooner but it is a little on the depressing side. So, the good news is that the efforts of my friends and family are paying off in the weight department. I have gained five pounds since landing in the big house which is no small accomplishment when your pancreas doesn't work right. The goal is to gain another five and then be able to maintain it.

My friend from church brought over yummy pasta and a playdough kit for my daughter last week. We have been busy making picnic food as a result. I would not have thought to bring the playdough but it was really fun and gave us something new to play. On Saturday, my mom arrived with steaks and hamburger from her favorite meat market. My husband made the steak on the grill this weekend and it was really good. We also went out for my favorite pizza. They sent me a coupon for $10 off for Customer Appreciation over the holidays. I might go there a little too often.

So, the bad news is that my PFTs were at an all time low on Friday. My doctor handled the whole thing very well. He is a glass half full kind of guy. I would follow him blindly most anywhere but I am more of a realist. So, all of this work with such ugly numbers left me in a bit of a funk. He assured me that he thinks they will bounce back if we stay the course. So, we have at least two more weeks of IVs. I also came home with appointments every two weeks for the next several months.

The vital statistics are looking better so that is a good sign and my journey with my treadmill continues. My blood work came back with low potassium so we have added that into my cocktail of meds and took out an oral antibiotic that the culture showed was likely not doing any good. We also restarted my oral antibiotic three times a day so the schedule is getting a little worse instead of better. However, it has a good track record so it is worth the effort.

My friend, David, is in the big house with pneumonia so please pray for him. He wasn't in church on Sunday and I imagine he is not too happy about it.

Blessings,

Cindy

Send flowers and go shopping

So, yesterday the dog was going crazy because the UPS man was outside. I assumed he was going to my neighbor's house until the doorbell rang. He brought me a bouquet of the most goregous roses you have ever laid eyes on. They look like someone painted them and are all different colors. The note with them said, "Keep your face to the sunshine and you cannot see the shadows." I later discovered that chocolates were tucked in the bottom of the box. Now, only your friends who know you really well would know to send roses and chocolate. My friend who sent them lived with me at one point in her life many years ago so she knows first hand about my crazy situation. The flowers were that much more fun to get since I didn't even know that she knew that I wasn't feeling good.

Earlier this week, my mom came to visit after running an errand for me. I had asked her to pick up a cape for me so I wouldn't freeze and wouldn't have to subject my IV to my jacket all the time. Since I declined the stitches, I tend to be a little overly cautious with my arm. She went shopping and came home with two sweaters which I determined were cute but not warm enough. So, she was not to be dissuaded. She went shopping again and arrived to visit with a darling new cape that she found at Macy's for me. She even bought the boring color that I would prefer but goes against her nature. She also found a wool sweater cape with a hood that I discovered is perfect for putting over my workout clothes in this glorious weather. So, now I am nice and warm which makes me happy and my Grandma especially happy.

The food train continues and I have been busy eating all sorts of fun things. My friend made tortilla soup which was new to me and really good. I have also had banana bread, cookies, jello, pudding pie, and the list goes on. One of my friends from church is bringing dinner later.

Today finds me waiting for PFTs this afternoon. I prefer to do them earlier and get it over with but time will tell. My daughter is going to go along as she likes to cheer while I blow in the magic box. So, if you happen to read this between now and then, think big, big numbers...

Blessings,

Cindy

Play Cards

Well, I have been home from the big house just over a week. We are wrapping up week two of IVs and have at least one more week to go. We will see what the PFTs say before anyone gets too excited or starts counting down the days. My husband handled cooking on the weekend which meant we got to eat out. A change of scenery is really nice even if you have to go home and take a nap after you eat.

My friends have the food train going again and I just have to say it is really great. I asked them not to tell the world that I was here again so they just pulled their own train together. There is something reassuring in knowing that your friends are going to show up with food and no one will care if you haven't washed your hair yet today. So, I have been eating really well with chicken pot pie, egg bake, and, rumor has it, today is my favorite take out chicken.

I have to say that I am really quite impressed that I have managed to pull off four vests a day. It is no small accomplishment. One of my other friends with CF told me that she does them around meal times and the last one before bed. I think it is helping as I was able to walk a little further on the treadmill yesterday. My self imposed pulmonary rehab is going pretty well and it is a lot better than arranging daycare and driving across town twice a week to do the same thing.

Yesterday, one of my friends came to visit and catch up and there is something also reassuring about hearing about the real world. It is apparently still out there and continues to go on. Today, another friend came to play cards and it was a great gift. She couldn't stay long but it was long enough to play one round of one of our favorite games. We used to play in high school so it looked a little different with a kid on each of our laps and another one of her kids busy coloring.

When I started my blog, it was my intention to help people know how to help without really having to spell it out. I didn't mean just me but anyone who isn't feeling well or could use a pick me up. You always hear people say they don't what to say or do. Sometimes you don't really have to say or do anything. You can just visit or play cards and hang out to make the time go a little faster.

Blessings,

Cindy

Sisterly Love

My sister and my two youngest nieces headed for home yesterday. I am used to being the older sister so it is a little odd to me for the roles to be reversed. My sister is very good at taking care of other people and making you think that she has nothing better in the world to do with her time. She arrives as if she just came across town rather than three hours in the van with two little kids.

In her two days away from home, she managed to drive us to speech and the library to replenish our supply of books. This is critical if you have been instructed to lay low and spend two hours a day hooked up to your vest machine shaking. Of course, if you add the seven hours a day on IVs and throw in a little rehab time on the treadmill, it creates a lot of reading time.

She also managed to take her two kids and my daughter to the grocery store to stock my house. I gave her a list and told her to get whatever else looked good. I will for sure send her again as my fridge looks so much better and she bought ice cream treats. Who can't use some of those to make you feel a little better about life? She was visiting me at the hospital when the dietician came to have a talk about my calories so she has the inside scoop on what to eat. By the time my sister was done cooking, she had made mashed potatoes with whole milk and hamburger gravy, browned hamburger for my freezer, shredded chicken for my freezer, made raspberry jello salad with extra heavy cool whip, and made my family dinner before she left and an extra dinner for my freezer.

The best part about her visit is that she is really good at making you forget that you are staying home. She picked up movies to watch and some to leave behind. When I mentioned getting a subscription to the paper, she came home from another run to the grocery with the daily paper and the ad to subscribe. She even managed to get in a game of Scrabble and do the dishes before she left.

So, today, as I was eating her leftover mashed potatoes and gravy and jello salad, I was especially thankful for my sister. I am also thankful for her husband and her mother-in-law who help cover for her while she is helping me and my older nieces who don't mind sharing her with me.

I was handling the whole deal pretty well until today and I think the lack of sleep is starting to get to me. My friend has been giving my daughter a ride home from school which allows me to do a vest and go back to sleep for a little while. It is a really great gift. She has the same gift that my sister has for making you feel like you are doing her a favor rather than the other way around. Tonight, my delivery man brought a new box of IVs and supplies. When I answered the door, he said, "I haven't seen you for a while." It was good while it lasted.

Blessings,

Cindy

The Big House

I should have seen the signs when I sat down for church on Christmas Eve. My husband was busy as an usher and my daughter was busy "helping" him. One of my home health nurses and her family sat down behind me in the last pew at the last service of the day. I wasn't sure at the time if this was a sign from God to prepare myself or accept the help of others. As it turns out, it was likely both.

I went back to the U last week on Wednesday. My friend was coming and I told her I wasn't sure if she should come or not as it might not be a really fun visit. She came anyway which worked out really well for me. Earlier in the week, I had discussed the pros and cons of a picc line versus a port and the big house versus my house with my other friend while our kids searched for library books. You can discuss a lot of life's problems at the library.

When the time came, it wasn't much of a decision. I did the PFTs, we saw the scores, and my bed was waiting. The only choice was whether to go home and pack my own pajamas or have someone bring them to me. I opted to go home and leave my car behind so I couldn't make a run for it. So, my friend packed up her two kids and my unhappy kid and drove me back. In the meantime, my in-laws came to stay the weekend with my husband and take over for my friend when she had to go back to Iowa.

I was hoping to go home on Monday but it was a University holiday so I couldn't do PFTs. I had to see the graph going in the positive direction and gain some weight in order to get bailed out. So, by Tuesday, things were looking up. I have a fancy new picc line and if it doesn't result in any blood clots, I will get a port a little further down the line. After my afternoon IVs, my husband was waiting in the circle drive. I never get tired of his cute face although he is getting more worry lines.

Today finds my daughter back at school and the next crew of help on the way. My sister and my niece are coming to play Barbie dolls for a few days and get me by until the weekend. She was already here last week as she is a little crazy but she made the time go by a lot faster and kept me distracted while I waited to get scheduled for a picc line.

The reality of the schedule is a little brutal but we will get used to it. I came home on one IV three times a day over two hours and another one once a day over an hour. I am also doing more vests and trying to lay low. Also, don't feel bad as I didn't really call anyone and tell them where I was for the last week. It didn't seem like very exciting news. I did call my husband at work and tell him that I was being sent to Paris for work. He managed very well without me which makes me a little nervous.

Blessings,

Cindy