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
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