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
Monday, October 1, 2012
Friday, September 14, 2012
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
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
Tuesday, September 11, 2012
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
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
Thursday, September 6, 2012
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
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
Thursday, August 23, 2012
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
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
Monday, July 16, 2012
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
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
Saturday, July 7, 2012
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
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
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