Since my last post, I have been busy trying to fight off the oxygen machine. I spent the month of September on IVs and adjusting to the reality of being a 1st grade mom. I realize that a lot of people are very excited about this but I still toy with the idea of teaching home school. Now, don't get all wild, I haven't really taken that step...yet.
The month of October slid by pretty well until Halloween when the bugs caught up with me. I had plans the next day to go to the movies with some friends. Instead, they loaded me up and brought me to the big house. While it was not my ideal social outing, it was the most fun I ever had going to the big house. Of course, they made a stop for Diet Coke and brought in lunch. Apparently, Wonder Woman really does take some days off.
After about a week, I was sent home on good behavior. Since then, I have been on IVs with oxygen and things, well, could be better. By November, it was time to make some hard choices and decide which way to bet. I am known in some circles as being a risk taker. I asked one of my oldest friends recently how she would describe my younger self. Without hesitation, she said, "You were a rule breaker." I know some of you are reading this and thinking, "Really?"
The highlight around here over the holidays was seeing my daughter perform her first piano recital. (She would tell you that I am not a rule breaker anymore.) It was a gift to me to get to be there in person. Amazing.
January passed by with IVs still going around the clock and a lot of folks stepping in to help. We have a caring bridge page set up and pages of directions for helpers to keep things running smooth in the months ahead. This week, we are struggling with blood sugars that won't cooperate and throw everything out of whack. I am not looking forward to doctor day this week.
Tomorrow we are celebrating my little sister's birthday around here! Well, we have to get through doctor day first. She is amazing and makes it look like she just has four kids in her spare time when she isn't volunteering at school, organizing the blood drive, baking for the neighbors, hanging out with her sister. I like to tell her that years from now, I plan to be calling the nursing home and asking to talk to the princess. Once a princess, always a princess!
Blessings,
Cindy
Monday, February 3, 2014
Friday, August 23, 2013
Summer Reality
Since my last post, a lot has happened. Our team total for the CF Walk climbed to over $7,000! I am amazed at the number of people who stepped up and shared their gifts towards a cure and advancing treatment. One thing that I have learned from meeting other people and families dealing with CF is that it doesn't always look the same. CF is an ugly disease on its most well behaved day. In the last few months, my blog has raised some controversy. At the end of the day, it is just my blog. There is no right or wrong way to "handle" CF. The reality is most days find me fighting off CF to live my life.
I have a really smart friend with CF who has always been dealing with things one step ahead of me. For a time, we shared the same doctor. Even then, we weren't walking down the exact same path. She talks about how it is hard for other people to understand CF because you can't see it. It is easy to ignore or try to wish away. I like to say that denial is a happy place. Some days I think my daughter understands it best. We were shopping for groceries recently and she noticed me stop and lean on my cart while I coughed. She went right behind me and started doing manual percussion in the middle of the meat aisle. That is our normal.
Our normal includes trips with our doll to get a port flush. Of course, Mommy needs one and our doll needs one too. When we stop at the pharmacy, they know us and play along to get our doll medicine. I think one of the hardest things about CF is how you age before your time. My daughter shouldn't know anything about "achies" in your lungs. I shouldn't be trying to figure out my living will or power of attorney in my spare time. She just learned that I was born with "achies" and it doesn't just happen when you become a Mommy.
So, yes, some days I might be crabby. Chances are good that I am tired. My blood sugar could be high. My oxygen could be low. The perfect balance is hard to find and it often changes if you blink. So, please give me the benefit of the doubt and know that I am barely holding my head above water on the very best day. If it looks like I am, chances are good that I am faking it and, God willing, it might just work.
Blessings,
Cindy
I have a really smart friend with CF who has always been dealing with things one step ahead of me. For a time, we shared the same doctor. Even then, we weren't walking down the exact same path. She talks about how it is hard for other people to understand CF because you can't see it. It is easy to ignore or try to wish away. I like to say that denial is a happy place. Some days I think my daughter understands it best. We were shopping for groceries recently and she noticed me stop and lean on my cart while I coughed. She went right behind me and started doing manual percussion in the middle of the meat aisle. That is our normal.
Our normal includes trips with our doll to get a port flush. Of course, Mommy needs one and our doll needs one too. When we stop at the pharmacy, they know us and play along to get our doll medicine. I think one of the hardest things about CF is how you age before your time. My daughter shouldn't know anything about "achies" in your lungs. I shouldn't be trying to figure out my living will or power of attorney in my spare time. She just learned that I was born with "achies" and it doesn't just happen when you become a Mommy.
So, yes, some days I might be crabby. Chances are good that I am tired. My blood sugar could be high. My oxygen could be low. The perfect balance is hard to find and it often changes if you blink. So, please give me the benefit of the doubt and know that I am barely holding my head above water on the very best day. If it looks like I am, chances are good that I am faking it and, God willing, it might just work.
Blessings,
Cindy
Thursday, May 9, 2013
Smart friends
Since I last wrote, I did make it to see the darling baby in Iowa. While my visit was brief, the sun came out to greet us and my family ate at my all time favorite place. On my return, I was laid up with some sinus problems. They can really be crabby when they want to but the weather is finally warming up which I hope will help in the long term. The excitement really got going over the course of the rest of the month.
One of my greatest assets is my many smart friends and family. A group of my friends had the idea that we could all walk at the CF Walk in May which at the time was several months away. It sounded simple really. A couple of friends and their cute kids walking around a lake. Well, I was not prepared for what really transpired. The excitement got underway with a party where we made some darling crafts and raised some money too! Next, we moved on to dinner at Pizza Ranch where we wore matching shirts and raised money in pizza sales and tips. While I was busy at Doctor Day, kids were lined up getting purple hair extensions on the day before the big walk.
While this was all going on, my daughter was busy signing her name every day and sending out letters to ask for donations. The results are still rolling in. She has gotten mail back every single day. Mail came from every corner of the United States. Some days it came in piles. We counted over 60 responses so far. Of course, now, we are busy making a scrapbook with all of the fun notes!
My only regret is that I didn't tell my team how much I appreciate all of their efforts when I had them all lined up for a photo. Well, let's face it. I was a little flustered. I would have cried. Then, my daughter would have cried because Mommy was crying. Then, my Mom would have cried. It could have gotten ugly really fast! So, I hope my team knows they are amazing, each and every walker and donor. Sometimes CF is a long walk on your own and it is good to have so many reminders that you aren't really on your own. By the way, that little idea raised over $5,000 so far and we aren't done just yet.
Blessings,
Cindy
One of my greatest assets is my many smart friends and family. A group of my friends had the idea that we could all walk at the CF Walk in May which at the time was several months away. It sounded simple really. A couple of friends and their cute kids walking around a lake. Well, I was not prepared for what really transpired. The excitement got underway with a party where we made some darling crafts and raised some money too! Next, we moved on to dinner at Pizza Ranch where we wore matching shirts and raised money in pizza sales and tips. While I was busy at Doctor Day, kids were lined up getting purple hair extensions on the day before the big walk.
While this was all going on, my daughter was busy signing her name every day and sending out letters to ask for donations. The results are still rolling in. She has gotten mail back every single day. Mail came from every corner of the United States. Some days it came in piles. We counted over 60 responses so far. Of course, now, we are busy making a scrapbook with all of the fun notes!
My only regret is that I didn't tell my team how much I appreciate all of their efforts when I had them all lined up for a photo. Well, let's face it. I was a little flustered. I would have cried. Then, my daughter would have cried because Mommy was crying. Then, my Mom would have cried. It could have gotten ugly really fast! So, I hope my team knows they are amazing, each and every walker and donor. Sometimes CF is a long walk on your own and it is good to have so many reminders that you aren't really on your own. By the way, that little idea raised over $5,000 so far and we aren't done just yet.
Blessings,
Cindy
Wednesday, March 6, 2013
Doctor Day
So, this post is a little delayed. When the news isn't fun, you find I am a little slow about posting. My weight is down, my PFTs are about the same, and the junk is trying to get out. The weight might be a result of my cooking but is more likely my lungs using too much energy. My doctor advised grocery delivery which I keep dragging my feet about getting started. His other words of wisdom made me laugh. "Have some playdates. Make sure that they are not at your house and that you are not there."
Well, that really is good advice. Sometimes a mom needs a reminder, well, this mom. I also had the delightful option of giving it a go on my own or calling in the 24 hour IV line. I am holding out for warm weather and melting snow. Of course, I am not holding out too long so we can avoid a months long adventure.
Yesterday, I spent most of the morning driving in our Minnesota snow to a new doctor for a different problem entirely. I will spare you all the details. When I arrived, the charming receptionist told me that I was ten minutes late. I thought to tell her that I already knew that and that my Mom had spent the night at my house so I could visit her but I thought better of it. In the end, I left with no more news, another Doctor, and more appointments.
Since my daughter was busy with Grandma, I took advantage to make a trip to visit my friends at the specialty pharmacy for some refills. I inadvertently threw away some sterile water that I still needed. You can't imagine how difficult it is to get some extra sterile water in cute little vials with pink covers. When I pulled up at the U, the valet man said, "Hi, Ms. Ellis." I had managed to avoid recognition for a few months.
The highlight of the whole adventure was picking up my daughter at my cousin's house and getting to visit his darling daughter. We had already met at the hospital as I am the obnoxious cousin who shows up when you have just had a baby. When his first daughter arrived, my husband agreed to drive me across three states for the 'Meet the Baby' party. On my next adventure, I hope to visit my friend's baby in a couple weeks if my lungs cooperate.
Blessings,
Cindy
Well, that really is good advice. Sometimes a mom needs a reminder, well, this mom. I also had the delightful option of giving it a go on my own or calling in the 24 hour IV line. I am holding out for warm weather and melting snow. Of course, I am not holding out too long so we can avoid a months long adventure.
Yesterday, I spent most of the morning driving in our Minnesota snow to a new doctor for a different problem entirely. I will spare you all the details. When I arrived, the charming receptionist told me that I was ten minutes late. I thought to tell her that I already knew that and that my Mom had spent the night at my house so I could visit her but I thought better of it. In the end, I left with no more news, another Doctor, and more appointments.
Since my daughter was busy with Grandma, I took advantage to make a trip to visit my friends at the specialty pharmacy for some refills. I inadvertently threw away some sterile water that I still needed. You can't imagine how difficult it is to get some extra sterile water in cute little vials with pink covers. When I pulled up at the U, the valet man said, "Hi, Ms. Ellis." I had managed to avoid recognition for a few months.
The highlight of the whole adventure was picking up my daughter at my cousin's house and getting to visit his darling daughter. We had already met at the hospital as I am the obnoxious cousin who shows up when you have just had a baby. When his first daughter arrived, my husband agreed to drive me across three states for the 'Meet the Baby' party. On my next adventure, I hope to visit my friend's baby in a couple weeks if my lungs cooperate.
Blessings,
Cindy
Monday, February 25, 2013
Listen
Do you ever feel like the universe is trying to tell you something?
Well, last week, I was busy comparing summer schedule with my friend. We usually have a summer adventure and my intent was really just to figure out when our kids got out of school, vacations already scheduled, and when our kids went back to school. When it came time from my friend to go home, she said, "My plans can change." I didn't get it. I eventually figured out that she thought I was looking for a good time to be out of commission and some kid coverage.
So, the next day, I had a conference call with my girlfriend. We have two kids, two husbands who travel, two dogs, and two different time zones. It has come to a point where we have a very brief conference call in between kid drop offs and pick ups. I am not even sure how we came to be talking about our schedules. We have some summer plans already in the works. She understood quite clearly what my other friend was trying to say. She said, "Well, when the time comes, we will have a conference call and handle it." Apparently, my friends have put a lot of thought into the possiblity of new lungs and how to get me from point A to B.
On the third day, I was catching up with my sister. We had already covered exciting things like who had room in their fire safe and who needed to buy one. Apparently, our Diet Cokes weren't quite done. I told her about my past two conversations. As it turns out, she was talking to a man with a small plane and asked him if he might give her a ride in the event that her sister went to get some new lungs. She lives about three hours away and that is about the time you have between "the call" and the surgery. When she saw him later, he told her that he had lined up a few other folks in case he was gone so one way or another, someone would fly her down.
Okay, lets just take a minute and put that all in perspective.
My friend who is a single mom is prepared to relocate her children and distract my daughter when the time comes. My other friend is prepared to schedule a conference call and fly across the country to run my household. And, my little sister, who is afraid of small planes has various men she doesn't really know well ready to fly her where she needs to go.
I thought that was all plenty and then I got a message from my friend with new lungs wanting to have lunch and a "talk" with me. If I didn't know better, I might think they were all talking to each other.
When the talk of new lungs first developed, my friend who had already been down that road told me that "those lungs will only get you so far." I know, trust me, I know.
Blessings,
Cindy
Well, last week, I was busy comparing summer schedule with my friend. We usually have a summer adventure and my intent was really just to figure out when our kids got out of school, vacations already scheduled, and when our kids went back to school. When it came time from my friend to go home, she said, "My plans can change." I didn't get it. I eventually figured out that she thought I was looking for a good time to be out of commission and some kid coverage.
So, the next day, I had a conference call with my girlfriend. We have two kids, two husbands who travel, two dogs, and two different time zones. It has come to a point where we have a very brief conference call in between kid drop offs and pick ups. I am not even sure how we came to be talking about our schedules. We have some summer plans already in the works. She understood quite clearly what my other friend was trying to say. She said, "Well, when the time comes, we will have a conference call and handle it." Apparently, my friends have put a lot of thought into the possiblity of new lungs and how to get me from point A to B.
On the third day, I was catching up with my sister. We had already covered exciting things like who had room in their fire safe and who needed to buy one. Apparently, our Diet Cokes weren't quite done. I told her about my past two conversations. As it turns out, she was talking to a man with a small plane and asked him if he might give her a ride in the event that her sister went to get some new lungs. She lives about three hours away and that is about the time you have between "the call" and the surgery. When she saw him later, he told her that he had lined up a few other folks in case he was gone so one way or another, someone would fly her down.
Okay, lets just take a minute and put that all in perspective.
My friend who is a single mom is prepared to relocate her children and distract my daughter when the time comes. My other friend is prepared to schedule a conference call and fly across the country to run my household. And, my little sister, who is afraid of small planes has various men she doesn't really know well ready to fly her where she needs to go.
I thought that was all plenty and then I got a message from my friend with new lungs wanting to have lunch and a "talk" with me. If I didn't know better, I might think they were all talking to each other.
When the talk of new lungs first developed, my friend who had already been down that road told me that "those lungs will only get you so far." I know, trust me, I know.
Blessings,
Cindy
Friday, February 15, 2013
Love Your People
My darling daughter came to me this week with a problem. First of all, when you are almost 6 years old, you really shouldn't have any problems. You shouldn't be confused about a situation or wondering about it. It shouldn't take two days to decide to ask your parents.
Let me be the first to say that I am a Mama Bear. You can say what you like about me but get involved with my people and you will see my true colors. I discussed my dilemna with my friend in hopes that she would talk me down off the ledge. She has been witness to my Mama Bear in action. As it turns out, she started to cry as she is a Mama Bear too.
After being really upset, I channeled my energy into my role at Musical Hearts at my daughter's Valentine party yesterday. As it turns out, being a mom with the prize bucket is a lot of fun! I also got to do a few projects for the teacher during the movie finale. It was a good morning all in all.
I was not really looking forward to it as I have not been feeling spectacular. I wheeze most of the time and have been having trouble getting sleep. My friend has been sleeping with oxygen so I tried that to no avail. The oxygen machine is really loud. The fatigue is worse than normal which is really annoying as your life doesn't always just stand still.
I made the executive decision to go to another Valentine party in the afternoon despite my uncooperative lungs. I have to say it was the right decision. A few weeks ago, my uncle told me he was playing music at my grandparents' assisted living center. I made a note and even called the Director to verify the time. When my aunt point blank asked me if I was going to visit while she was out of town, I failed to give her any details as she tells her Mama everything. I even tried to recruit my cousin to meet me there so there would be a few more dancers.
When my daughter and I arrived a few mintues late, the staff met me at the door. They took our coats and whisked us behind the wall that blocks the front door from the party room. When my uncle spotted us and waved us in, my Grandma stood up and clapped her hands in delight. One of the staff members pointed my Grandpa out in the back of the room and the fact that he had tears in his eyes. By the time the chair dancing and singing was done, they broke out the cookies which made my daughter a little more brave in a sea of new faces.
A darling lady at our table was asking about school and how old my daughter was now. She asked her again about two minutes later. My daughter said, "You already asked me that" in her most kind but speculative voice. The lady said, "I did? I forget a lot. Tell me again." By the end of our visit, my daughter could be found at dinner in her undershirt eating my Grandpa's macaroni and my Grandma's chicken. She looked perfectly natural riding my Grandpa's walker down to dinner.
On our way home, we stopped to play a game of Bingo with her other Grandpa and have a cold Diet Coke in a can. My daughter was adament about playing Bingo to the point that Grandpa bought her a card. Yes, we are starting a little young.
So, what's the lesson here? Love your people. There are only so many people in your life who will clap in delight when you enter the room. Spend more time with those people. On my way home, my Grandpa tried to pay me for the cookies I brought to him. I asked him, "Grandpa, how many cookies do you think you bought me in my life?" My point exactly.
Blessings,
Cindy
Let me be the first to say that I am a Mama Bear. You can say what you like about me but get involved with my people and you will see my true colors. I discussed my dilemna with my friend in hopes that she would talk me down off the ledge. She has been witness to my Mama Bear in action. As it turns out, she started to cry as she is a Mama Bear too.
After being really upset, I channeled my energy into my role at Musical Hearts at my daughter's Valentine party yesterday. As it turns out, being a mom with the prize bucket is a lot of fun! I also got to do a few projects for the teacher during the movie finale. It was a good morning all in all.
I was not really looking forward to it as I have not been feeling spectacular. I wheeze most of the time and have been having trouble getting sleep. My friend has been sleeping with oxygen so I tried that to no avail. The oxygen machine is really loud. The fatigue is worse than normal which is really annoying as your life doesn't always just stand still.
I made the executive decision to go to another Valentine party in the afternoon despite my uncooperative lungs. I have to say it was the right decision. A few weeks ago, my uncle told me he was playing music at my grandparents' assisted living center. I made a note and even called the Director to verify the time. When my aunt point blank asked me if I was going to visit while she was out of town, I failed to give her any details as she tells her Mama everything. I even tried to recruit my cousin to meet me there so there would be a few more dancers.
When my daughter and I arrived a few mintues late, the staff met me at the door. They took our coats and whisked us behind the wall that blocks the front door from the party room. When my uncle spotted us and waved us in, my Grandma stood up and clapped her hands in delight. One of the staff members pointed my Grandpa out in the back of the room and the fact that he had tears in his eyes. By the time the chair dancing and singing was done, they broke out the cookies which made my daughter a little more brave in a sea of new faces.
A darling lady at our table was asking about school and how old my daughter was now. She asked her again about two minutes later. My daughter said, "You already asked me that" in her most kind but speculative voice. The lady said, "I did? I forget a lot. Tell me again." By the end of our visit, my daughter could be found at dinner in her undershirt eating my Grandpa's macaroni and my Grandma's chicken. She looked perfectly natural riding my Grandpa's walker down to dinner.
On our way home, we stopped to play a game of Bingo with her other Grandpa and have a cold Diet Coke in a can. My daughter was adament about playing Bingo to the point that Grandpa bought her a card. Yes, we are starting a little young.
So, what's the lesson here? Love your people. There are only so many people in your life who will clap in delight when you enter the room. Spend more time with those people. On my way home, my Grandpa tried to pay me for the cookies I brought to him. I asked him, "Grandpa, how many cookies do you think you bought me in my life?" My point exactly.
Blessings,
Cindy
Monday, February 11, 2013
The Cheat Sheet
Last week, my Doctor made a special trip to see me at the U. He is a little too popular for his own good so his appointments were all filled up resulting in Doctor Day on a different day of the week. I stayed home for my regular Wed evening outing the night before to finish putting "my house in order." Well, I have a darling lady who helps me put my actual house in order when I call her in a panic. I mean more like the dishes done, laundry caught up, groceries bought, bills paid, library books returned, and that sort of thing. Basically, the list of things that might cause my husband stress if I should go on an unexpected "vacation."
As it turns out, I managed to avoid "vacation" in the big house and IVs. It was a double celebration day and reminds me why I don't make predictions about Doctor Day. When my husband saw my scores, he said, "Did it hurt when you blew that much?" Some of you have noticed that I never really reveal my pulmonary function (PFT) test scores here. There are two reasons for that mainly. One is that they are a number and one reflection of how things are or aren't going. The other is that I like my Mom to sleep at night so I am very specific about not telling her or anyone who might tell her. She is a smart chic so she can likely figure it out but the numbers will keep you up in the night if you think about them too long.
Lately, I have had a couple of good questions that remind me that a cheat sheet might be helpful. The big house is in deed the hospital. While it is good to go there when you need to, I will go to great lengths to avoid living there for any length of time. The junk or "achies" as my daughter calls them is the stuff that is stuck in my lungs and does not want to come out. The junk is always there is one form or another but sometimes it feels thicker to me or is harder to breath depending on the day. It also contributes to the fatigue and the people who hand out handicap parking writing me off with a six year pass to park wherever I please.
The "bugs" are another term for a variety of germs. While these can be the ordinary bugs that my daughter encounters at school and tries very hard not to share with her mama, they are also the big bugs. I have the most trouble when the bugs gang up on me. For example, I can have pseudomonas and staph at the same time which results in needs of treating two different bugs with two different regiments of antibiotics. In my experience, this has resulted in the big house. The more common scenario on a day to day basis is pseudomonas in various forms. At this time, I have three different strains of it which means that what med might kill one strain will not treat the other two and vice versa. I think a normal person in this situation would just lie down on the couch and take one for the team. With CF, you kind of have to work your life in between the germs or in spite of them.
One of my friends asked recently why my left lung tends to give me more trouble. She thought it would be the same on both sides. I have tried to come up with a way to describe this that isn't just gross but haven't had any luck. So, consider yourself warned. If you take two garbage bags and turn them upside down to resemble lungs, you can pour two gallons of green slime over the top of the bags and inside if you want to get technical. (If you want to know how to make green slime, my daughter can give you the recipe). If you pour it over both bags/lungs, you will see that the slime doesn't spread evenly or stick to each side the same. You will also likely see the bag changes colors where the slime was but moved on. It is similar with my lungs. One type of bug might be living on the top right side. One might be in both. One could be in the bottom left and so on. The other factor is the scarring in my lungs which results from damage done by current and prior infections. I tend to have the most trouble moving the stuff in my lower left lung which is why my husband hits it for me in my yoga room.
So, what does that mean? I am sick on any given day. It is really more of a question of how sick I am today. I love my vest three times a day to help the junk move around and typically have more energy right after doing a vest. If I am really sick, I do it four times a day. You can usually tell if I am feeling sluggish because I will opt out of the things that are optional. I don't typically plan a lot on Monday to catch up after the weekend and have been finding myself tired again by Wednesday. When I was working my day job, I had altered my schedule to work longer days on Mon, Tue, Thur, and Fri. This gave my body a chance to catch up a little bit mid week. Now, I find the Diet Coke helps the fatigue but that has its downsides too.
Well, that is likely much more information that anyone really wanted but you get the idea. If you stay tuned, more information is coming about the CF Walk and shirt orders for this year. Our plan is to have a team called Love Your Lungs that walks across the country at various sites. I need to firm up a few details. We plan to walk around one of the local lakes but folks are welcome to walk at any location. My daughter wants me to warn you that it will probably be long and there might be bugs. She has agreed to be our honorary team leader. She waved her magic wand and made me healthy last week. Wouldn't it be crazy if that worked?
Blessings,
Cindy
As it turns out, I managed to avoid "vacation" in the big house and IVs. It was a double celebration day and reminds me why I don't make predictions about Doctor Day. When my husband saw my scores, he said, "Did it hurt when you blew that much?" Some of you have noticed that I never really reveal my pulmonary function (PFT) test scores here. There are two reasons for that mainly. One is that they are a number and one reflection of how things are or aren't going. The other is that I like my Mom to sleep at night so I am very specific about not telling her or anyone who might tell her. She is a smart chic so she can likely figure it out but the numbers will keep you up in the night if you think about them too long.
Lately, I have had a couple of good questions that remind me that a cheat sheet might be helpful. The big house is in deed the hospital. While it is good to go there when you need to, I will go to great lengths to avoid living there for any length of time. The junk or "achies" as my daughter calls them is the stuff that is stuck in my lungs and does not want to come out. The junk is always there is one form or another but sometimes it feels thicker to me or is harder to breath depending on the day. It also contributes to the fatigue and the people who hand out handicap parking writing me off with a six year pass to park wherever I please.
The "bugs" are another term for a variety of germs. While these can be the ordinary bugs that my daughter encounters at school and tries very hard not to share with her mama, they are also the big bugs. I have the most trouble when the bugs gang up on me. For example, I can have pseudomonas and staph at the same time which results in needs of treating two different bugs with two different regiments of antibiotics. In my experience, this has resulted in the big house. The more common scenario on a day to day basis is pseudomonas in various forms. At this time, I have three different strains of it which means that what med might kill one strain will not treat the other two and vice versa. I think a normal person in this situation would just lie down on the couch and take one for the team. With CF, you kind of have to work your life in between the germs or in spite of them.
One of my friends asked recently why my left lung tends to give me more trouble. She thought it would be the same on both sides. I have tried to come up with a way to describe this that isn't just gross but haven't had any luck. So, consider yourself warned. If you take two garbage bags and turn them upside down to resemble lungs, you can pour two gallons of green slime over the top of the bags and inside if you want to get technical. (If you want to know how to make green slime, my daughter can give you the recipe). If you pour it over both bags/lungs, you will see that the slime doesn't spread evenly or stick to each side the same. You will also likely see the bag changes colors where the slime was but moved on. It is similar with my lungs. One type of bug might be living on the top right side. One might be in both. One could be in the bottom left and so on. The other factor is the scarring in my lungs which results from damage done by current and prior infections. I tend to have the most trouble moving the stuff in my lower left lung which is why my husband hits it for me in my yoga room.
So, what does that mean? I am sick on any given day. It is really more of a question of how sick I am today. I love my vest three times a day to help the junk move around and typically have more energy right after doing a vest. If I am really sick, I do it four times a day. You can usually tell if I am feeling sluggish because I will opt out of the things that are optional. I don't typically plan a lot on Monday to catch up after the weekend and have been finding myself tired again by Wednesday. When I was working my day job, I had altered my schedule to work longer days on Mon, Tue, Thur, and Fri. This gave my body a chance to catch up a little bit mid week. Now, I find the Diet Coke helps the fatigue but that has its downsides too.
Well, that is likely much more information that anyone really wanted but you get the idea. If you stay tuned, more information is coming about the CF Walk and shirt orders for this year. Our plan is to have a team called Love Your Lungs that walks across the country at various sites. I need to firm up a few details. We plan to walk around one of the local lakes but folks are welcome to walk at any location. My daughter wants me to warn you that it will probably be long and there might be bugs. She has agreed to be our honorary team leader. She waved her magic wand and made me healthy last week. Wouldn't it be crazy if that worked?
Blessings,
Cindy
Sunday, January 27, 2013
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
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
Wednesday, November 7, 2012
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
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
Wednesday, October 31, 2012
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
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
Wednesday, October 24, 2012
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
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
Monday, October 1, 2012
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
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
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
Thursday, June 14, 2012
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
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
Wednesday, May 30, 2012
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
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
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