Last night, my family went out for Chinese and we went by the garden to water on our way home. My daughter was intent to go to the playground so my husband went with her and I went up the hill to the garden.
I have been reading about people with CF who like to run. Well, maybe like is a strong word. Some might like it while others like to have clear lungs and think it helps. One guy posted that he considers it running away from CF. It seems fitting really and the closest you can get to someone hitting you the old fashioned way if you don't want to strap on your vest.
It is fair to say that running is not my thing. I used to play basketball and I hardly think my short time on the tennis team or the golf team added to my abilities to run. So, I walk. I have been walking a little faster as of late. I found it really helps to set the time to count down instead of count up. It must be all in my head. I never really tried to run for any length of time because I didn't think my daughter or my small dog would save me when it didn't work out.
Well, as I finished the garden, I decided to give it a shot. I ran from my garden which gave me a little head start being at the top of the hill to my husband at the playground. The look on his face was awesome. He just stood with his hands on his hips looking at me like I had really lost my mind. He told my daughter to look at Mommy run! He claims he never saw me run in 10 years which I don't think is exactly true. So, we all lined up again and raced back to the car to go home. I see why people like to run with oxygen.
I am not a runner just yet but you never know. Today, I am off to pool aerobics and hoping that I make it through the class as this is my first attempt since last summer. Progress is slow.
Blessings,
Cindy
Saturday, July 30, 2011
Tuesday, July 26, 2011
Line Up
We are just home from a great trip to Kentucky and our adoption reunion. We typically stay at a hotel every year. This year, we all stayed at our friends house which was such fun. I went up to the guest room to do a treatment (vest and nebulizers). I didn't think much of it until my daughter came in to ask me a question. Her friends all followed her. I reassured them that it didn't hurt and it actually kind of tickled. They looked skeptical so they all lined up to put their hand on my vest. One wanted to know why I was doing that and I explained that it keeps my lungs healthy. Another shared that her grandparent smoked so they didn't have healthy lungs. Someone else wanted to know if it gave me big muscles. I flexed my arm and she looked reassured. They all filed out and went back to playing. A couple came back again to feel it one more time. One of my daughter's earliest friends in life came back too. I don't think she believed that it didn't really hurt.
I find it amazing how kids are natural caregivers. They didn't turn around or run out. They weren't turned away by the noise. They were curious and concerned. They were also very accepting. It is a great lesson for all of us. I think somewhere along the way we lose our freedom to ask questions and support each other. I find sometimes people don't really understand cystic fibrosis but they are afraid to ask. I think my sister gets the most interesting questions. People take her aside or pull her in the other room to ask how I am doing when I am across the room. It doesn't really make sense to me.
Today, I am very grateful to be reunited with my bed and my cute dog. I am also grateful to my friend who babysat Hank all weekend and my friend who took care of my garden and raspberries. I am very thankful for some more crops waiting for me and a cancelled meeting today. I am looking forward to a little flexibility in our schedule.
Other news around here is that the official report is not in yet but the clot seems to be almost gone in my arm. I can stop having my blood drawn every week and I told the nice people who were sending me a new machine to check my blood to just keep it. My theory is that it wasn't gone in December because I still had a picc line and wasn't really able to move my arm very much. When the line got moved to the right arm, my left arm was doing all the work and the lifting. The tech told me that everyone is different and some people just have them for life while others clear up but usually more quickly than mine. (I can't imagine that anything about me would be stubborn.) The hearing test did come back with loss that will likely just stay that way. I was told to come back in two years but was given permission to use the big gun antibiotics if I need them. I was given three weeks off of visiting my friends at the U which is a huge promotion for me.
Blessings,
Cindy
I find it amazing how kids are natural caregivers. They didn't turn around or run out. They weren't turned away by the noise. They were curious and concerned. They were also very accepting. It is a great lesson for all of us. I think somewhere along the way we lose our freedom to ask questions and support each other. I find sometimes people don't really understand cystic fibrosis but they are afraid to ask. I think my sister gets the most interesting questions. People take her aside or pull her in the other room to ask how I am doing when I am across the room. It doesn't really make sense to me.
Today, I am very grateful to be reunited with my bed and my cute dog. I am also grateful to my friend who babysat Hank all weekend and my friend who took care of my garden and raspberries. I am very thankful for some more crops waiting for me and a cancelled meeting today. I am looking forward to a little flexibility in our schedule.
Other news around here is that the official report is not in yet but the clot seems to be almost gone in my arm. I can stop having my blood drawn every week and I told the nice people who were sending me a new machine to check my blood to just keep it. My theory is that it wasn't gone in December because I still had a picc line and wasn't really able to move my arm very much. When the line got moved to the right arm, my left arm was doing all the work and the lifting. The tech told me that everyone is different and some people just have them for life while others clear up but usually more quickly than mine. (I can't imagine that anything about me would be stubborn.) The hearing test did come back with loss that will likely just stay that way. I was told to come back in two years but was given permission to use the big gun antibiotics if I need them. I was given three weeks off of visiting my friends at the U which is a huge promotion for me.
Blessings,
Cindy
Friday, July 15, 2011
A New Day
Today finds me very thankful for my darling daughter and her cute dad. I am also grateful for great neighbors and friends who come when you call. This morning started out way too early with the first appointment at the PFT lab. I also got to see my regular doctor who I haven't seen since before my picc line came out. It was quite a change from our "normal" conversations over the past several months about what antibiotic or strategy to try to kill the infections. The graph looks even more beautiful than last time and I have decided to quit holding my breath. I have aged considerably in the past few months, not to mention days. I am good at helping other people figure out major life issues but my own are quite another thing all together. So, for today, I am going to bask in the sound of cartoons and the rain on the garden.
I also started seeing my trainer again this week. Yesterday, it hurt to walk but today is better aside from being really tired. My trainer wants to see me doing cardio 4-6 times/week. The count doesn't include yoga twice a week or my visits to lift weights. Since I have been up twice this week at 6 a.m., I have realized that you can get a lot more done in the world when you start your day at that hour. My body won't allow me to do that every day but it really is quite remarkable.
Other news of the day includes a temporary stop to my coumadin/warfarin. I am going back to the U on Mon to get the report on my hearing and will have another ultrasound done on my left arm to see if the clot is gone. If so, my arm might be able to use future picc lines. If not, we will likely explore other options when the time comes. I am also going to reduce my prednisone after my next big adventure. This is an experiment of sorts as it is better to not take it but you don't want to mess with what is working. So, we will just try it and see.
Lastly, I wish you could find a way to carry a camera on you as the moments come and go fast. I have been thinking about getting a "real" camera versus my digital but it still doesn't solve the problem of not having it with you when you want it. Last night, my daughter was sitting on the couch in her green nightgown waiting patiently for my husband to find the right Dora book. The picture of him reading to her in his T-ball coach shirt was one of the ones that you would hang on fridge and just leave it there. This morning, it was a picture of her taking her two dollar bills and standing on her tip toes to buy the coveted candy at the pharmacy. She was so proud of doing it herself despite the fact that she could barely see the teller. The pink sparkle shoes just made it that much more darling.
Blessings,
Cindy
I also started seeing my trainer again this week. Yesterday, it hurt to walk but today is better aside from being really tired. My trainer wants to see me doing cardio 4-6 times/week. The count doesn't include yoga twice a week or my visits to lift weights. Since I have been up twice this week at 6 a.m., I have realized that you can get a lot more done in the world when you start your day at that hour. My body won't allow me to do that every day but it really is quite remarkable.
Other news of the day includes a temporary stop to my coumadin/warfarin. I am going back to the U on Mon to get the report on my hearing and will have another ultrasound done on my left arm to see if the clot is gone. If so, my arm might be able to use future picc lines. If not, we will likely explore other options when the time comes. I am also going to reduce my prednisone after my next big adventure. This is an experiment of sorts as it is better to not take it but you don't want to mess with what is working. So, we will just try it and see.
Lastly, I wish you could find a way to carry a camera on you as the moments come and go fast. I have been thinking about getting a "real" camera versus my digital but it still doesn't solve the problem of not having it with you when you want it. Last night, my daughter was sitting on the couch in her green nightgown waiting patiently for my husband to find the right Dora book. The picture of him reading to her in his T-ball coach shirt was one of the ones that you would hang on fridge and just leave it there. This morning, it was a picture of her taking her two dollar bills and standing on her tip toes to buy the coveted candy at the pharmacy. She was so proud of doing it herself despite the fact that she could barely see the teller. The pink sparkle shoes just made it that much more darling.
Blessings,
Cindy
Tuesday, July 12, 2011
Blood sugar
Last Friday, I went to the U to check on my diabetes. My morning blood sugar has been a little higher than usual in the last few days. As it turned out, my A1C went up a little. It has never gone up that I can remember since I was diagnosed with CF Related Diabetes (CFRD) in 2007. We decided to increase my morning insulin and check more blood sugars. I am very compliant except when it comes to checking my blood sugar as often as requested. It tends to be the same so I tend not to worry about it but that isn't really the best plan. When your blood sugar is high, it helps the bacteria grow and makes it more difficult to fight infection creating a vicious cycle.
On a more positive note, we spent the weekend with friends at the lake and it was so fun! My daughter had a great time with four of her friends swimming in the lake and looking for fish wearing her goggles. We are trying to lay low this week in preparation for our next big adventure to Kentucky.
Tomorrow morning, I am going to meet with my trainer which is really exciting. I have been doing yoga and riding bike but my muscles could use a little extra attention. My trainer left the club for awhile so I had a couple of other trainers. I learned that they are not all the same so I am very happy that she is back. We will see if I feel the same way after she gets done with me.
Today, I am thankful for good friends, some new crops, progress, meeting my deductible, and great dinner on the deck. I am being paged ("MOM") so have a great day.
Blessings,
Cindy
On a more positive note, we spent the weekend with friends at the lake and it was so fun! My daughter had a great time with four of her friends swimming in the lake and looking for fish wearing her goggles. We are trying to lay low this week in preparation for our next big adventure to Kentucky.
Tomorrow morning, I am going to meet with my trainer which is really exciting. I have been doing yoga and riding bike but my muscles could use a little extra attention. My trainer left the club for awhile so I had a couple of other trainers. I learned that they are not all the same so I am very happy that she is back. We will see if I feel the same way after she gets done with me.
Today, I am thankful for good friends, some new crops, progress, meeting my deductible, and great dinner on the deck. I am being paged ("MOM") so have a great day.
Blessings,
Cindy
Wednesday, July 6, 2011
Doctor Day via Vacation
Well, this post is very late but the past few days have been very busy. Last Thursday, I went back to the doctor to make sure that nothing dramatic was going on since we pulled my picc line out. I saw a different doctor so I got another opionion on my particular situation. The graph for the PFTs looked so much better that I thought about hanging it on my fridge.
After another meeting and giving some blood to research, I was off to Audiology. It was clear that I was not raising my hand at all the right beeps when the lady running it went to get someone to check that the machine was working right. I apparently have good hearing during conversation but not at the higher decibels. She reassured me that this was considered age related loss except for the fact that I am all of 35. So, I will go back again to meet with the doctor.
Next, it was home to pack and deliver the dog to my mom who was kind enough to drive him the rest of the way to my grandparents. In order to be gone for four days, I had to find a dog sitter, a butterfly sitter (to take over for me), and a kind soul to water our garden. I also had to pack all my equipment and nebs in a giant suitcase. By the time my husband got off work, we were almost ready to go.
Our first stop was The Great Wolf Lodge in Wisconin Dells. It was a great time and so fun to get to actually do something relaxing with my family. My daughter told me to just hold her hand in the wave pool and then I wouldn't be scared. She is brave beyond her four years.
Our next adventure was the race track in Joliet, Illinois. My husband's family met us there so we got to see our darling nephews and catch up with everyone. One of his college friends came with his new son and wife too! One of the highlights in Illinois was being one exit away from Steak & Shake. My nephew didn't think that I could eat it three days in a row but I did and that must be a few extra calories.
We went home via Iowa to catch up with my friends from college and meet some new babies! They aren't really babies anymore so my visit was a little overdue. My friend agreed to host all of us so we could just order pizza. It was a little different than our days in the dorm with six kids between the four of us.
I am very thankful to all the folks who agreed to help me out over the weekend. It was a really good time. Now, I am off to find a dog sitter for my next big adventure and get to the pool before I lose my ambition.
Blessings,
Cindy
After another meeting and giving some blood to research, I was off to Audiology. It was clear that I was not raising my hand at all the right beeps when the lady running it went to get someone to check that the machine was working right. I apparently have good hearing during conversation but not at the higher decibels. She reassured me that this was considered age related loss except for the fact that I am all of 35. So, I will go back again to meet with the doctor.
Next, it was home to pack and deliver the dog to my mom who was kind enough to drive him the rest of the way to my grandparents. In order to be gone for four days, I had to find a dog sitter, a butterfly sitter (to take over for me), and a kind soul to water our garden. I also had to pack all my equipment and nebs in a giant suitcase. By the time my husband got off work, we were almost ready to go.
Our first stop was The Great Wolf Lodge in Wisconin Dells. It was a great time and so fun to get to actually do something relaxing with my family. My daughter told me to just hold her hand in the wave pool and then I wouldn't be scared. She is brave beyond her four years.
Our next adventure was the race track in Joliet, Illinois. My husband's family met us there so we got to see our darling nephews and catch up with everyone. One of his college friends came with his new son and wife too! One of the highlights in Illinois was being one exit away from Steak & Shake. My nephew didn't think that I could eat it three days in a row but I did and that must be a few extra calories.
We went home via Iowa to catch up with my friends from college and meet some new babies! They aren't really babies anymore so my visit was a little overdue. My friend agreed to host all of us so we could just order pizza. It was a little different than our days in the dorm with six kids between the four of us.
I am very thankful to all the folks who agreed to help me out over the weekend. It was a really good time. Now, I am off to find a dog sitter for my next big adventure and get to the pool before I lose my ambition.
Blessings,
Cindy
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