Rearrange

When I went to church on Christmas Eve, my favorite home health nurse was across the aisle.   I was a little worried that it was a sign as I met her at the same spot last year.  She was quick to knock on wood for me, a church pew.  As my family was wrapping up their duties, a friend asked, "How are you?"  I responded with my typical fine.  "Is that a fine or a really fine?"  It is possible for people to know you a little too well.

By the time Doctor Day arrived in the new year, I was feeling a little bit more positive.  Although, I am not one to make predictions on Doctor Day, I wasn't exactly worried.  When I arrived and my clinic nurse reminded me that it was annual studies, I felt a bit of trepidation.  It was going to be a longer day than I thought.  Annual studies involve lots of extra "fun": a chest x-ray, lots of blood work, a bone density test, you get the idea.  After my chest x-ray, the tech told me it was fine to "rearrange."  It was his way of telling me to put my regular clothes back on.  When the lovely lady drawing my blood picked up the seventh tube, I quit counting.

When it was all done, the story was about the same.  The blood sugars were high, the PFTs were not cooperating, and my weight had held its own without any magic medicine.  There was some good news.

A week passed quietly and then the junk arrived.  So, it was time to rearrange literally.  After five days of laying low, there was some improvement but not enough.  Of course, the nasty Minnesota weather doesn't help matters at all.  My husband flew out for Europe for work and my sister arrived with her two youngest kids to help pass the time playing Barbies.  Of course, she managed to cook, rent some movies, and help with my latest project while she was here.

So, this week, I am anticipating another Doctor Day and trying to will my left lung to cooperate with me. 

Until then, I have a special request besides the regular prayers to keep the bugs at bay.  I ventured out for church today and saw that my friend wasn't doing so good.  Of course, he likes to "sugar coat" the details but he could use some extra prayers.  His girlfriend does a really great job trying to keep his spirits up but the fight gets long on days that your body just isn't playing fair.

Blessings,

Cindy

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