So, today was a day of extremes. I went back to the U where we were going to either pull my picc line or restart a drug on a 24 hour pump. I got a little lucky at the PFT lab. The staff is changing and my lab is closing where I will be promoted to the "adult" lab. This means my 35 years on the Pediatric floor will come eventually to a close. One of the staff members who has been working at the U as long as I have been going to the U was there to help me today. The first try was not at all inspiring. The second and third were still not as inspiring as I hoped. We waited and filled out the survey. After two more attempts, I agreed that we had tried although the results were still a little inconclusive. One magic number was about the same and the other was slightly down which may or may not signify anything.
Next, I was off to visit Audiology to see if my hearing is really a concern or if the ear muffs are just a figment of my imagination. I also had to wait for the office to page my doctor and for him to call back. So, my hearing test was postponed but I never got the message. While I was trying to schedule another one, my phone rang and it was one of the darling women in the office telling me that we could pull my picc line. (I would really get tired of me calling all the time if I had her job.) Of course, I had to agree that we would put it back in if I got sick and likely it would be a port next time.
The highlight of the day was coming home without my picc line and watching my daughter start jumping up and down. She exclaimed, "Now, you can go to the pool with me and Daddy!" My list of fun things to do (besides a lot of treatments) includes:
dancing
yoga
swimming
personal trainer
hiking at the State Park
sprinkler park
traveling
camping
riding my bike
making freezer meals
tending the garden and the roses
finishing the office project (this isn't really fun)
opening the "spa" (treatment room)
Well, this is just the beginning of the list so feel free to send suggestions. I will still be doing three vests a day but I can sleep like a normal person. In a few days, my arm will be healed and I can even wash my hair without a vet glove for the first time in roughly five months.
Blessings,
Cindy
Friday, June 24, 2011
Thursday, June 23, 2011
Snapshot
When my daughter first came home, I tried to find another CF mom rather than figuring it all out myself. I figured someone must have already figured out how to manage CF or not be managed by it and still have time to be a mom. It is fair to say that I have high standards for motherhood. I had convinced my husband about becoming a father and then waited another 11 months to turn 30 (the magic age for adoptive mothers in China) before the three year wait for my daughter started. I had plenty of time to make plans for us. I did eventually meet a few other moms who also have CF but not until I had figured out things like the fact that we could watch Sesame Street and do a treatment at the same time. Earlier this week, we had a typical day that gives you a snapshot into our "normal."
So, this is the magic week of sleep which includes sleeping in as much as possible. We were sleeping when our friend called to see if we were still planning to go to crafts at the library. After doing the first treatment of the day and getting ready, we were at the library. The line was huge to get in for crafts so we got our books first and had a few minutes for crafts before we had to leave. We were due at gymnastics. I had promised that my daughter's friend would be in her class since we signed up together for the same time. Of course, the class was split and they were not together. After a trip to Target and lunch at the cafe, we were back home again to sneak in another treatment and put away our groceries. Then, it was time for a playdate and a church meeting. After dropping my daughter off for a little bit, I tried to wrap up my volunteer committment with little luck. Next, it was off to the dance open house to pick up our recital CD and register for next year. The line was out the door before it started! After picking up my daughter from her playdate, we went home to grab some snacks and line up our gear for our T-ball debut. My husband is the coach so we waited for his arrival and raced to the field. Well, that is when the rain came. The kids were all really darling trying to play ball with rain dripping off their little noses. After picking up some Chinese, we were home again to eat and do the final treatment of the day before we started over the next day.
While sitting under my umbrella watching t-ball, a rainbow appeared. When I lifted my umbrella a little, I realized that it was a full rainbow that went all the way across the sky. I think it is a reminder to slow down enough to enjoy what you are doing. I don't mind taking my daughter to her activities but I want to eliminate the rush and take our time. We should be at cooking class right now but she is still sleeping and I am not going to wake her up today.
So, this is the magic week of sleep which includes sleeping in as much as possible. We were sleeping when our friend called to see if we were still planning to go to crafts at the library. After doing the first treatment of the day and getting ready, we were at the library. The line was huge to get in for crafts so we got our books first and had a few minutes for crafts before we had to leave. We were due at gymnastics. I had promised that my daughter's friend would be in her class since we signed up together for the same time. Of course, the class was split and they were not together. After a trip to Target and lunch at the cafe, we were back home again to sneak in another treatment and put away our groceries. Then, it was time for a playdate and a church meeting. After dropping my daughter off for a little bit, I tried to wrap up my volunteer committment with little luck. Next, it was off to the dance open house to pick up our recital CD and register for next year. The line was out the door before it started! After picking up my daughter from her playdate, we went home to grab some snacks and line up our gear for our T-ball debut. My husband is the coach so we waited for his arrival and raced to the field. Well, that is when the rain came. The kids were all really darling trying to play ball with rain dripping off their little noses. After picking up some Chinese, we were home again to eat and do the final treatment of the day before we started over the next day.
While sitting under my umbrella watching t-ball, a rainbow appeared. When I lifted my umbrella a little, I realized that it was a full rainbow that went all the way across the sky. I think it is a reminder to slow down enough to enjoy what you are doing. I don't mind taking my daughter to her activities but I want to eliminate the rush and take our time. We should be at cooking class right now but she is still sleeping and I am not going to wake her up today.
Monday, June 20, 2011
Double fun
We spent Father's Day at the Arboretum which was totally fun as the roses are all in bloom! This morning, my daughter and I went to visit our community garden plot. It was so exciting to see it all growing at last. And, this being Monday, we are expecting our second delivery from our CSA (community supported agriculture).
Today, most of the day was spent at the U. I really am beginning to feel like I still work there. Since I am not on IVs this week, my nurse also has the week off. We went to get my blood checked and a dressing change. We also picked up some new meds that the insurance company won't let me buy at my local CVS. (You know things are complicated when you have four different pharmacies.)
Well, the first fun news of the day was that you can order an INR machine to check your own blood similar to checking your blood sugar. I would still have to call in the results and get a nurse on the phone to adjust my meds but we would eliminate at least a weekly trip to draw blood. My daughter really stares them down so it would be great to skip it.
The other big news of the day is that my friendly insurance company paid an invoice from January after I had already paid it creating a nice credit. You could argue that I already spent the money but getting it back is really quite fun. They are sending me both a check and some new hoses for my oxygen machine. I know I need to work on having a little more fun.
Blessings,
Cindy
Today, most of the day was spent at the U. I really am beginning to feel like I still work there. Since I am not on IVs this week, my nurse also has the week off. We went to get my blood checked and a dressing change. We also picked up some new meds that the insurance company won't let me buy at my local CVS. (You know things are complicated when you have four different pharmacies.)
Well, the first fun news of the day was that you can order an INR machine to check your own blood similar to checking your blood sugar. I would still have to call in the results and get a nurse on the phone to adjust my meds but we would eliminate at least a weekly trip to draw blood. My daughter really stares them down so it would be great to skip it.
The other big news of the day is that my friendly insurance company paid an invoice from January after I had already paid it creating a nice credit. You could argue that I already spent the money but getting it back is really quite fun. They are sending me both a check and some new hoses for my oxygen machine. I know I need to work on having a little more fun.
Blessings,
Cindy
Friday, June 17, 2011
Doctor Day
We had a fun day if you take out today's PFTs. My weight is right on the magic number. Of course, it is always better to be above the magic number. The PFTs just don't cooperate very well. Today was the big decision about whether to stop the IVs. Of course, the PFTs went down for no apparent reason making the decision about what to do with me anything but obvious. One choice was to go on a 24 hour pump where the IVs would just go all the time. The thought is to keep the level of the drug more consistent in your body and give the germs less of a chance to fight. The other thought is to take what we can get and stop for a week to see what happens. Of course, either way, the count would start over if the week trial doesn't turn out as we hope.
The other factor is that I only have a single lumen per my optimistic request. In order for a 24 hour pump and another IV, I would need a double lumen. This would mean two lines coming out of my arm. A very kind soul tried to tell me that we could just thread a double over the existing single line. It starts in my arm and goes up my vein to my chest. Well, the options aren't really great.
In the end, I left the U and headed for the car show with my daughter and her grandpa. It was a nice distraction searching for all the pink cars. After the doctor I saw today consulted with my regular doctor, it was decided to wait a week and see what happens. So, I have three IVs left and then I plan to sleep in! Please do not call me on Sunday morning even if you can not find your frying pan (you know who you are). My daughter was a little confused about seeing a different doctor today. She wanted to know if my doctor was visiting his Grandma.
Blessings,
Cindy
The other factor is that I only have a single lumen per my optimistic request. In order for a 24 hour pump and another IV, I would need a double lumen. This would mean two lines coming out of my arm. A very kind soul tried to tell me that we could just thread a double over the existing single line. It starts in my arm and goes up my vein to my chest. Well, the options aren't really great.
In the end, I left the U and headed for the car show with my daughter and her grandpa. It was a nice distraction searching for all the pink cars. After the doctor I saw today consulted with my regular doctor, it was decided to wait a week and see what happens. So, I have three IVs left and then I plan to sleep in! Please do not call me on Sunday morning even if you can not find your frying pan (you know who you are). My daughter was a little confused about seeing a different doctor today. She wanted to know if my doctor was visiting his Grandma.
Blessings,
Cindy
Thursday, June 16, 2011
Remind me
A few days ago, I got a letter addressed to myself. I had no idea where it had come from until I opened it. A few years ago, I was at a conference where participants were asked to write down their personal and professional goals. The leader of the conference collected them and promised to send them back. I am happy to report that the personal goals were met to the degree that they were within my control. The professional goals were laid down to rest for a higher purpose.
Tonight, I got a phone call that reminded me that I am in the right place. I think it is easy to wonder if we could be doing more. I tried to do more this year and share my skills in various ways. I think it is fair to say that it didn't work out really. I am coming to realize that the lesson might be about doing less. In the past few weeks, I have had time to cook a little more and exercise. A lot of that relates to lung function but some of it comes down to time too.
I have always found a sense of security in the fact that God has more work for me to do. I really prefer to have the plan in hand but I am confident that He has plans for me and isn't done yet. Today, my latest calling was tested and I found myself wondering about the grand plan. My friend on the other end reminded me that there is more to life than long hours and estate gifts.
Blessings,
Cindy
Tonight, I got a phone call that reminded me that I am in the right place. I think it is easy to wonder if we could be doing more. I tried to do more this year and share my skills in various ways. I think it is fair to say that it didn't work out really. I am coming to realize that the lesson might be about doing less. In the past few weeks, I have had time to cook a little more and exercise. A lot of that relates to lung function but some of it comes down to time too.
I have always found a sense of security in the fact that God has more work for me to do. I really prefer to have the plan in hand but I am confident that He has plans for me and isn't done yet. Today, my latest calling was tested and I found myself wondering about the grand plan. My friend on the other end reminded me that there is more to life than long hours and estate gifts.
Blessings,
Cindy
Wednesday, June 15, 2011
Date Night
On our girls adventure, my daughter and I found a fun new menu planning tool. We picked up a menu board for our fridge. It is working pretty well so far but I find that we tend to change our menu a lot or just rearrange it. We had a very fun weekend and my husband won both his races so he was having fun too.
We also had a surprise date night this week. My last date with my husband was the work Christmas party. My daugther decided that she wanted to go visit her grandma and her cousins who were staying with my aunt. She also made sure to request shrimp for dinner. On our date, we got to have some dinner and take a romantic stroll around Menard's for my latest project.
Yesterday, I spent most of the day by myself which rarely happens. After the weekly nurse visits, I went on a bike ride and got a little exercise. I also managed to squeeze in a trip to the grocery, a visit to the library, a stop at the bank, a pedicure, and a haircut.
Today, I am very thankful for time to do the laundry that I have been trying very hard to ignore and some cancelled plans. I am hopeful that all of this rain is helping our garden and our new CSA grow! I am also glad to have my assistant back home again. She helped make chicken broccoli "cupcakes" last night and I have never seen anyone so excited over using the cupcake pan. Today, we are going to make some pasta salad for the Salad Luncheon at church tomorrow.
Blessings,
Cindy
We also had a surprise date night this week. My last date with my husband was the work Christmas party. My daugther decided that she wanted to go visit her grandma and her cousins who were staying with my aunt. She also made sure to request shrimp for dinner. On our date, we got to have some dinner and take a romantic stroll around Menard's for my latest project.
Yesterday, I spent most of the day by myself which rarely happens. After the weekly nurse visits, I went on a bike ride and got a little exercise. I also managed to squeeze in a trip to the grocery, a visit to the library, a stop at the bank, a pedicure, and a haircut.
Today, I am very thankful for time to do the laundry that I have been trying very hard to ignore and some cancelled plans. I am hopeful that all of this rain is helping our garden and our new CSA grow! I am also glad to have my assistant back home again. She helped make chicken broccoli "cupcakes" last night and I have never seen anyone so excited over using the cupcake pan. Today, we are going to make some pasta salad for the Salad Luncheon at church tomorrow.
Blessings,
Cindy
Friday, June 10, 2011
Race weekend
Today marks the beginning of another race weekend. My daughter and I are having a girls weekend which involves no cars unless I trade in my Grand Am for a Mustang at the last minute. I tend to buy fun things when my husband is out of town but I can't decide on a color and the rear wheel drive isn't very practical. Instead, we will be hanging out with our cousins (old and young) and going to a birthday party. I have promised that we can visit the Red Box which is thrilling for some reason that is beyond me. The crying about Daddy on the airplane has subsided for now.
An acquaintance sent me her summer bucket list this week. She sat down with her kids and made post it notes for short activites, 1/2 day activities, full day activities, and more than one day activities. She circulated the list to ask for input on other ideas. I find that the warm weather arrives much too late and leaves much too quickly. One of the things on our list for last year was to visit more state parks. We only made it to Nerstrand Big Woods but it was worth the trip. What is on your summer list?
I am a little worried this week about some of my favorite people. I think it is a great gift to have good friends and family. I am thankful this week for more yummy soup and a few extra treatments by hand. I am still hoping the paper fairy will come visit me and hold my hand to find the bottom of my desk. I still really miss my assistant at work. You would think that I would get over it anytime now.
Blessings,
Cindy
An acquaintance sent me her summer bucket list this week. She sat down with her kids and made post it notes for short activites, 1/2 day activities, full day activities, and more than one day activities. She circulated the list to ask for input on other ideas. I find that the warm weather arrives much too late and leaves much too quickly. One of the things on our list for last year was to visit more state parks. We only made it to Nerstrand Big Woods but it was worth the trip. What is on your summer list?
I am a little worried this week about some of my favorite people. I think it is a great gift to have good friends and family. I am thankful this week for more yummy soup and a few extra treatments by hand. I am still hoping the paper fairy will come visit me and hold my hand to find the bottom of my desk. I still really miss my assistant at work. You would think that I would get over it anytime now.
Blessings,
Cindy
Monday, June 6, 2011
Doctor Day
The good news is that I got a pass from the big house! I was quite convinced that I should pack my pjs. I just can't seem to move the junk on my own very well. There are two scores that matter when you do PFTs. The first is the amount of air that you can blow in one second, your FEV1. Mine was up this week towards my normal range. It would still have most people on the couch but I will take it. The other score is the total amount of air you can blow out, your FVC or forced vital capacity. I still can't recreate some healthier numbers although it was better than last week.
The latest plan is to finish this round of IVs up over the next two weeks and wait another week to see what happens. I am going to be a little smarter this time and not make any fun plans until it really does look a little more promising. I have given up on covering my IV as it is just much too hot. I have gotten some very funny looks but my options of what to wear are much more fun.
Over the weekend, our family spent a lot of time outside. We had an impromptu picnic and finally got our bike shopping done. We also got our garden planted and my daughter had her first week of soccer. There is one other girl on her team but she missed last night. My daughter told me she was "surrounded by boys" but she kept up with all of them.
I am thankful today for a day with no plans or obligations. I am also thankful for the delivery of soup last week and the picnic that I didn't have to organize. I am looking forward to using my bike this week. We established that the bike trailer was needed after my daughter would only ride the length of two houses. I am also thankful to be wrapping up some prior committments and finding more time to just hang out.
Blessings,
Cindy
The latest plan is to finish this round of IVs up over the next two weeks and wait another week to see what happens. I am going to be a little smarter this time and not make any fun plans until it really does look a little more promising. I have given up on covering my IV as it is just much too hot. I have gotten some very funny looks but my options of what to wear are much more fun.
Over the weekend, our family spent a lot of time outside. We had an impromptu picnic and finally got our bike shopping done. We also got our garden planted and my daughter had her first week of soccer. There is one other girl on her team but she missed last night. My daughter told me she was "surrounded by boys" but she kept up with all of them.
I am thankful today for a day with no plans or obligations. I am also thankful for the delivery of soup last week and the picnic that I didn't have to organize. I am looking forward to using my bike this week. We established that the bike trailer was needed after my daughter would only ride the length of two houses. I am also thankful to be wrapping up some prior committments and finding more time to just hang out.
Blessings,
Cindy
Thursday, June 2, 2011
Happy Birthday!
Well, it actually isn't my birthday but I do think a summer birthday might be more fun. I was delighted to get to host my grandpa's birthday party today. We had planned to continue our annual tradition of visiting Mankato for his birthday after our last day of school. It was a good plan when I was feeling a little better but would result in missing a treatment. So, the party moved to my house which was so much fun. I doubt he ever watched a puppet show, painted, and watched "the girls" get their nails done on his birthday.
Of course, we had planned to bring a cake until we learned that he liked carrot cake. I imagine that we could have figured that out and we even had the recipe and grocery list. My mom had enough wisdom to encourage me to buy one instead. The truth be told that we were running out of time in between our ice cream social and school festivities. We also still had to get the decorations done.
My line is still running slow today. It isn't as slow as before but still a little slower than it should be. We will see what tomorrow brings for our options.
Today, I am very thankful for the offers to hit me, for my aunt who relocated the birthday party for me, and for my mom who drove out of her way to hit me and help with the party preparations. I have been hoping to have some more fun and it was really quite fun. I have the glitter nail polish to prove it. I am also thankful to my friend who decided to visit me while I did a vest so she could have coffee with me. I am always grateful for the friend looking forward to watching my darling daughter so I can go to the doctor and not have to endure the crocodile tears. She continues to tell me to just have my doctor "take it out, Mommy." It would be excellent if it were just that easy.
Blessings,
Cindy
Of course, we had planned to bring a cake until we learned that he liked carrot cake. I imagine that we could have figured that out and we even had the recipe and grocery list. My mom had enough wisdom to encourage me to buy one instead. The truth be told that we were running out of time in between our ice cream social and school festivities. We also still had to get the decorations done.
My line is still running slow today. It isn't as slow as before but still a little slower than it should be. We will see what tomorrow brings for our options.
Today, I am very thankful for the offers to hit me, for my aunt who relocated the birthday party for me, and for my mom who drove out of her way to hit me and help with the party preparations. I have been hoping to have some more fun and it was really quite fun. I have the glitter nail polish to prove it. I am also thankful to my friend who decided to visit me while I did a vest so she could have coffee with me. I am always grateful for the friend looking forward to watching my darling daughter so I can go to the doctor and not have to endure the crocodile tears. She continues to tell me to just have my doctor "take it out, Mommy." It would be excellent if it were just that easy.
Blessings,
Cindy
Subscribe to:
Posts (Atom)