Well, I have been busy having fun. I saw lots of family over the weekend, did a little black Friday shopping, and even managed to visit the newest baby in the family. I also got to spend a fun evening bowling with my family and my sister’s family. On our way home, three of my nieces were riding with me. I started to cough and the oldest two were quiet. They are likely used to it by now. The youngest is about to turn 3 and was buckled in her car seat already. She said, “Ciny, do you need me to hit you?” Oh, you just never know where your best supporters will be found. Of course, I was then laughing and coughing but it was the right idea.
Last year, it was about this time that I was in desperate need of a message. I needed someone to tell me that things would all work out. My husband tried to tell me but he looked skeptical. I was skeptical too. About a month later, I learned a little more about a man in my church on the prayer list. I knew of him but I had never actually met him. It was another month or so before I got to meet him. It turns out that he is on the same bumpy road but a little further down the path.
Last week, I was in the front of church with my video camera in tow to capture my daughter’s latest choir performance. When the congregation started to sing, I could hear my messenger singing behind me. He likes to sit in the same pew every week. When the congregation started to pray, I could again hear him behind me a few rows back. He makes the long drive to church every week from across town to go to church in his hometown. He is the oldest person that I have ever met with CF. Quite honestly, the sight of him makes me smile. He doesn’t really know that things will all work out but he is a gentle reminder of God’s bigger plan.
My favorite part of the church service is the end when the Pastor says, “The Lord bless you and keep you; The Lord make his face shine upon you and give you peace.” I would be glad to go to church every day if he would be willing to keep repeating it. So, today finds me home from another visit to the U. I saw a third really smart doctor. The numbers are not pretty and it is so frustrating. I have been nauseous for three weeks and the antibiotics have done some good but not enough. My weight also took a hit which is not looked upon with favor. So, we are trying a new approach. We are trading inhaled antibiotics and almost done with oral antibiotics. Then, the plan is to make friends with our treadmill, the local pool, and our favorite yoga instructor every day for the next two weeks. Then, we will hold our breath and see what my doctor has to say about it.
Of course, the next two weeks include a lot of other big dates on the calendar like my husband’s birthday, my friends moving, my husband heading either across the country and/or across the ocean for work, my daughter’s dance recital and Christmas program, and the list goes on. So, the schedule will have to be modified to drop a few balls and pick up some new ones that are more about me and less about everything else. Until then, you can also find me hanging out at church waiting for the end of the service and a little reassurance.
Blessings,
Cindy
Monday, November 28, 2011
Monday, November 21, 2011
Birthday Wrap Up
Well, I would have posted this a little sooner but I have been busy celebrating. I was fortunate to get lots of fun mail, texts, and calls on my birthday. I was also reminded that my circle is not as small as it can feel on a cold Minnesota winter day. I spent a couple hours on my birthday learning how to make my friend’s homemade pizza. She had plenty of other things to do as she is getting ready to move across the country. Her son noticed that I was teary after talking about when the moving trucks would arrive. In his most innocent four year old voice, he said, “Cindy, are you okay?” The boy is wise about women well beyond his years.
A sampling of other random acts of kindness included:
My mom who didn’t call to sing to me when she woke up at 5:30 a.m.
My in-laws who sent me a fun gift certificate to one of my regular shopping destinations.
My girlfriend who sent me a friends and family coupon for the same place.
My wise husband who managed to sneak roses into my kitchen.
My daughter who spent a lot of time writing, “Happy Birthday Mom” on her homemade card.
My sister-in-law who sent me some good advice and tea to enjoy and relax.
My sister who is really good about sharing her cute kids and had them sing happy birthday on my answering machine with cha, cha, cha at the end.
My dad who tracked me down so he could wish me a happy birthday and even sent mail.
My grandma who called to tell me to wear my coat and be sure to zip it up.
My grandpa who took the phone from her to tell me about meeting his new great-grandson. He claims that his 13 great grandchildren are God’s gift for living to old age.
My husband’s grandma who sent me a real letter which is so appreciated.
My friend of most of my 36 years who invited me to lunch this week.
My cute dog who has taken to sitting on my lap. Apparently, laying next to my hip isn’t close enough anymore.
My librarian who informed me that I can renew kid movies and quit paying late fees.
My friend who is busy trying to organize our next adoption reunion despite the fact that we are spread out across the country.
My older relative who went to visit her neighbor who is sick and can’t travel this holiday. She invited him and his roommate to join her for Thanksgiving dinner.
My aunt who gave her lunch to her elderly friend because it was her favorite soup.
My friend who bought coffee for the lady behind her in line.
My resident from my days as an RA who brought up her neighbor’s garbage cans.
My fellow adoptive mom who picked up groceries for her co-worker.
My cousin who gave her bookcases to someone else and just asked them to pass it on instead of paying her.
My great aunt who shared her coupons with a family in need.
Lastly, my sister and aunt who sent on my request to others and the donations that resulted to the Cystic Fibrosis Foundation.
Blessings,
Cindy
A sampling of other random acts of kindness included:
My mom who didn’t call to sing to me when she woke up at 5:30 a.m.
My in-laws who sent me a fun gift certificate to one of my regular shopping destinations.
My girlfriend who sent me a friends and family coupon for the same place.
My wise husband who managed to sneak roses into my kitchen.
My daughter who spent a lot of time writing, “Happy Birthday Mom” on her homemade card.
My sister-in-law who sent me some good advice and tea to enjoy and relax.
My sister who is really good about sharing her cute kids and had them sing happy birthday on my answering machine with cha, cha, cha at the end.
My dad who tracked me down so he could wish me a happy birthday and even sent mail.
My grandma who called to tell me to wear my coat and be sure to zip it up.
My grandpa who took the phone from her to tell me about meeting his new great-grandson. He claims that his 13 great grandchildren are God’s gift for living to old age.
My husband’s grandma who sent me a real letter which is so appreciated.
My friend of most of my 36 years who invited me to lunch this week.
My cute dog who has taken to sitting on my lap. Apparently, laying next to my hip isn’t close enough anymore.
My librarian who informed me that I can renew kid movies and quit paying late fees.
My friend who is busy trying to organize our next adoption reunion despite the fact that we are spread out across the country.
My older relative who went to visit her neighbor who is sick and can’t travel this holiday. She invited him and his roommate to join her for Thanksgiving dinner.
My aunt who gave her lunch to her elderly friend because it was her favorite soup.
My friend who bought coffee for the lady behind her in line.
My resident from my days as an RA who brought up her neighbor’s garbage cans.
My fellow adoptive mom who picked up groceries for her co-worker.
My cousin who gave her bookcases to someone else and just asked them to pass it on instead of paying her.
My great aunt who shared her coupons with a family in need.
Lastly, my sister and aunt who sent on my request to others and the donations that resulted to the Cystic Fibrosis Foundation.
Blessings,
Cindy
Wednesday, November 16, 2011
Random Acts of Kindness
Yesterday, I was sitting on the floor of the hall in my daughter's dance studio and came to the conclusion that I am a slow learner. I like to make plans. A lot of plans. My husband doesn't like to make plans. We use a big wall calendar to negotiate our plans. I like to come up with them and he likes the challenge of me trying to get him to agree with the plans. If it is really a big plan, I run the plan by my doctor who has veto power.
The problem isn't that I am not prepared or that I don't execute my plans. The problem is that real life gets in the way. After a morning meeting, I took my daughter to the zoo to meet up with her friend. I was really nauseous. One of the new pills that I am taking three times a day makes me want to throw up on my shoes. It doesn't actually make me throw up so that is the good news. However, you will see me sporting some new Sea Bands. They are these funny things you wear on your wrists that apply pressure to a certain spot that is supposed to make you less nauseous. There is some controversy over whether they really work. I find that I can at least function with them on so I am trying to get over the fact that they are a fashion nightmare. After spending some time at home and resting our head, it was time to take my daughter to dance next. My wise sister advised me to stay home. I didn't listen. For some reason, my head is happy when it can lean against something which is what led to me sitting on the floor waiting for my dancer.
The bad news is that the drug is expected to last three weeks and the nausea isn't getting any better. One of my friends pointed out to me that she thinks I created a problem of people not understanding CF. She is my friend and she is honest. She told me that until a few years ago, you couldn't tell that I had CF if you didn't know me and I didn't really fill you in unless you asked. I spent some time thinking about this and I have to agree with her. I am not at all interested in being known as the girl with CF.
I have been fortunate most of my life that I haven't had to explain it to people. I grew up in a small town where people either knew or someone filled them in. Recently, a friend was worried about her son who had to wear leg braces to school for the first time. She was concerned about how his friends would react and a little suprised when they thought they were cool. It made me think of some of my earliest friends who got to hang out with me while I went to get my meds from the school nurse. As I got older, they had my back and likely still do when I need it.
I also went to a small, liberal arts college where word travels fast. Our college had a huge team for the CF walk so folks knew about it without me having to explain the details. When I later got a job at church during graduate school, people again either figured it out or filled each other in. My husband even knew I had CF before he ever met me. He heard his nephews praying for me before they went to bed. They went to my church in Indiana where I was frequently on the prayer chain. So, I have been blessed with some people in my life who hands down get it to the best of their abilities.
So, what is my point? Well, I should have listened to my sister. I don't really like to say that I can't do something. Nine times out of ten, I will do it anyway. It isn't as much about being stubborn as it is about not letting CF run my life. I am learning that there is a balance and my calendar needs to be a little lighter. Granted almost everything that we like to do is in a few mile radius but I could still do less.
My mom was recently talking with me about my doctor and I realized that he has the long term view. He is the guy who has to deal with me when they close the door in those little rooms. I am a crier. I am not a sad crier but a mad crier. You start talking about needles and options and I will cry. It is automatic because frankly it makes me mad. It shouldn't be such a struggle. So, today I had a fun idea. I read about this lady who completed random acts of kindness for every year of her birthday and asked other folks to the do the same in her honor. As I get ready to celebrate tomorrow, I am asking my blog readers to do a random act of kindness and let me know about your experience. I hope you will find something fun to do in honor of my birthday and in honor of my team's 36 years of good work. They really do have their work cut out for them.
Blessings,
Cindy
The problem isn't that I am not prepared or that I don't execute my plans. The problem is that real life gets in the way. After a morning meeting, I took my daughter to the zoo to meet up with her friend. I was really nauseous. One of the new pills that I am taking three times a day makes me want to throw up on my shoes. It doesn't actually make me throw up so that is the good news. However, you will see me sporting some new Sea Bands. They are these funny things you wear on your wrists that apply pressure to a certain spot that is supposed to make you less nauseous. There is some controversy over whether they really work. I find that I can at least function with them on so I am trying to get over the fact that they are a fashion nightmare. After spending some time at home and resting our head, it was time to take my daughter to dance next. My wise sister advised me to stay home. I didn't listen. For some reason, my head is happy when it can lean against something which is what led to me sitting on the floor waiting for my dancer.
The bad news is that the drug is expected to last three weeks and the nausea isn't getting any better. One of my friends pointed out to me that she thinks I created a problem of people not understanding CF. She is my friend and she is honest. She told me that until a few years ago, you couldn't tell that I had CF if you didn't know me and I didn't really fill you in unless you asked. I spent some time thinking about this and I have to agree with her. I am not at all interested in being known as the girl with CF.
I have been fortunate most of my life that I haven't had to explain it to people. I grew up in a small town where people either knew or someone filled them in. Recently, a friend was worried about her son who had to wear leg braces to school for the first time. She was concerned about how his friends would react and a little suprised when they thought they were cool. It made me think of some of my earliest friends who got to hang out with me while I went to get my meds from the school nurse. As I got older, they had my back and likely still do when I need it.
I also went to a small, liberal arts college where word travels fast. Our college had a huge team for the CF walk so folks knew about it without me having to explain the details. When I later got a job at church during graduate school, people again either figured it out or filled each other in. My husband even knew I had CF before he ever met me. He heard his nephews praying for me before they went to bed. They went to my church in Indiana where I was frequently on the prayer chain. So, I have been blessed with some people in my life who hands down get it to the best of their abilities.
So, what is my point? Well, I should have listened to my sister. I don't really like to say that I can't do something. Nine times out of ten, I will do it anyway. It isn't as much about being stubborn as it is about not letting CF run my life. I am learning that there is a balance and my calendar needs to be a little lighter. Granted almost everything that we like to do is in a few mile radius but I could still do less.
My mom was recently talking with me about my doctor and I realized that he has the long term view. He is the guy who has to deal with me when they close the door in those little rooms. I am a crier. I am not a sad crier but a mad crier. You start talking about needles and options and I will cry. It is automatic because frankly it makes me mad. It shouldn't be such a struggle. So, today I had a fun idea. I read about this lady who completed random acts of kindness for every year of her birthday and asked other folks to the do the same in her honor. As I get ready to celebrate tomorrow, I am asking my blog readers to do a random act of kindness and let me know about your experience. I hope you will find something fun to do in honor of my birthday and in honor of my team's 36 years of good work. They really do have their work cut out for them.
Blessings,
Cindy
Sunday, November 13, 2011
Doctor Day
So, I have learned that you don't make plans on Doctor Day. It is really not ideal. It seems harmless at the time but things don't work out that easy or fast. I am a little behind on my post since I have been at the U the last three days. I am reminded that I am not on the payroll anymore so some distance might be good.
I am always amazed how I continue to learn things on my visits. You would think that I would reach a point where there wasn't anything else to learn after so many years of asking questions. I was seeing one of my doctor's colleagues on this visit. I learned that I have two strains of pseudomonas which I already figured out. They are both resistant to one of the drugs that I was using in my nebulizer that was supposed to produce the magic results. I thought that explained it. As it turns out, there is a difference between being resistant in IV form and in inhaled form. If you get an IV, only a portion of the drug gets to your lungs. The dose usually has to be so high that toxicity can become a problem. However, when you inhale the drug, it all goes to your lungs. Of course, all drugs are not meant to be inhaled. However, it shouldn't always be resistant if it is inhaled. Well, the doctor explained a little better than that but you get the idea.
So, now what? Well, we are going to try two new oral antibiotics and continue the inhaled antibiotics. One of the new ones has a history of giving me the hives. So, my family packed up on Saturday morning and went to visit our friends at the Procedure Room. I took the first dose and waited to see what happened. As we were drinking juice and watching cartoons, it struck me that this is not exactly normal in most families. At least, I didn't see anyone else hanging out with their family in the Procedure Room on Saturday morning. We got done just in time to make it to Chinese class and drop my daughter off for a fun date with her friend. They walked away holding hands.
I will go back and see another of my doctor's colleagues in two weeks and then my regular doctor two weeks after that. When I went to visit the pharmacy at the U, they asked where my daughter was today which is also a sign that we might spend too much time there. Today, I am thankful for a day to lay low and have no plans. If I get ambitious, I might make it to yoga but time will tell.
Blessings,
Cindy
I am always amazed how I continue to learn things on my visits. You would think that I would reach a point where there wasn't anything else to learn after so many years of asking questions. I was seeing one of my doctor's colleagues on this visit. I learned that I have two strains of pseudomonas which I already figured out. They are both resistant to one of the drugs that I was using in my nebulizer that was supposed to produce the magic results. I thought that explained it. As it turns out, there is a difference between being resistant in IV form and in inhaled form. If you get an IV, only a portion of the drug gets to your lungs. The dose usually has to be so high that toxicity can become a problem. However, when you inhale the drug, it all goes to your lungs. Of course, all drugs are not meant to be inhaled. However, it shouldn't always be resistant if it is inhaled. Well, the doctor explained a little better than that but you get the idea.
So, now what? Well, we are going to try two new oral antibiotics and continue the inhaled antibiotics. One of the new ones has a history of giving me the hives. So, my family packed up on Saturday morning and went to visit our friends at the Procedure Room. I took the first dose and waited to see what happened. As we were drinking juice and watching cartoons, it struck me that this is not exactly normal in most families. At least, I didn't see anyone else hanging out with their family in the Procedure Room on Saturday morning. We got done just in time to make it to Chinese class and drop my daughter off for a fun date with her friend. They walked away holding hands.
I will go back and see another of my doctor's colleagues in two weeks and then my regular doctor two weeks after that. When I went to visit the pharmacy at the U, they asked where my daughter was today which is also a sign that we might spend too much time there. Today, I am thankful for a day to lay low and have no plans. If I get ambitious, I might make it to yoga but time will tell.
Blessings,
Cindy
Thursday, November 10, 2011
Big numbers
Big numbers. Well, that was what was supposed to happen. The good news is that the slope is going up. The bad news is that it is not very fast. It is still in the drive yourself to the hospital in the middle of the night range. Of course, we managed to slide through September and October so that is positive. Now, November proves to be more challenging. It has been said that this just isn't my time of year. I am more of a sunshine, swim in the outdoor pool, kind of girl. Someone asked if there was anything specific to pray for on my behalf. Big numbers, more air, cooperating germs, any of those things are good.
Last week, one of my friends had a really not very fun test and told me that it made her think of me. I was hoping that she wasn't implying that I am not very fun. She explained that she drove herself to the test and thought how often I wait to be poked and proded by myself. It is funny because I don't really think about that very often besides on picc line day. I am not a fan of picc line day.
Picc line day is like waiting for something to go in your body when you know your body well enough to know that it is not going to be easy. You have no idea how long it will be with you, if by the grace of God, your veins cooperate. Of course, everyone gives a "short" estimate, three weeks, hopefully. It never turns out to be three weeks. It isn't really about the picc line itself or the trouble washing your own hair or doing dishes or lifting a hot casserole out of the oven. It isn't about the end of your workout routine or the hiatus from yoga class. It is really the waiting and wondering what will happen if it doesn't work. When it goes on for months instead of weeks, you can't help but wonder.
So, we have the numbers today. Tomorrow, we will decide what to do about them. After that, I might make some birthday plans but I don't want to get ahead of myself. Plans aren't really in the cards right now. The plan is to take care of myself. After my post about my schedule, I had a lot of good questions and a lot of offers. A few people offered to help take care of my daughter but the truth of the matter is she is the fun one who keeps me sane. She is also a great distraction on PFT day. She uses all of the energy that isn't spent on maintaining me but I am okay with that. Today, she told me she would miss me when she went to college. She claims she likes me so much that she just can't help herself. She might exaggerate a little bit.
Lately, I have also had a lot of fun invitations. One was to the craft fair, another for a birthday party, one for a church retreat, and another for a weekend at the water park. The problem is that my family made a commitment to take my daughter to Chinese school on Saturday. A few people have suggested we could just skip a week. We did miss the first week on vacation. I figured we knew the basics so it would be okay. I still don't know how to say Xiaopengyyou hao! I think it might not seem important but it is important to us right now as we try to figure out where our daughter will go to school next year. I can't fill her in on what she missed or pick up the homework for her. I tried to learn Chinese later in life and know that nothing about it comes naturally. I spent two semesters in class and still got the wrong food when I orered dinner in China. My language skills could just be my age starting to show.
Blessings,
Cindy
Last week, one of my friends had a really not very fun test and told me that it made her think of me. I was hoping that she wasn't implying that I am not very fun. She explained that she drove herself to the test and thought how often I wait to be poked and proded by myself. It is funny because I don't really think about that very often besides on picc line day. I am not a fan of picc line day.
Picc line day is like waiting for something to go in your body when you know your body well enough to know that it is not going to be easy. You have no idea how long it will be with you, if by the grace of God, your veins cooperate. Of course, everyone gives a "short" estimate, three weeks, hopefully. It never turns out to be three weeks. It isn't really about the picc line itself or the trouble washing your own hair or doing dishes or lifting a hot casserole out of the oven. It isn't about the end of your workout routine or the hiatus from yoga class. It is really the waiting and wondering what will happen if it doesn't work. When it goes on for months instead of weeks, you can't help but wonder.
So, we have the numbers today. Tomorrow, we will decide what to do about them. After that, I might make some birthday plans but I don't want to get ahead of myself. Plans aren't really in the cards right now. The plan is to take care of myself. After my post about my schedule, I had a lot of good questions and a lot of offers. A few people offered to help take care of my daughter but the truth of the matter is she is the fun one who keeps me sane. She is also a great distraction on PFT day. She uses all of the energy that isn't spent on maintaining me but I am okay with that. Today, she told me she would miss me when she went to college. She claims she likes me so much that she just can't help herself. She might exaggerate a little bit.
Lately, I have also had a lot of fun invitations. One was to the craft fair, another for a birthday party, one for a church retreat, and another for a weekend at the water park. The problem is that my family made a commitment to take my daughter to Chinese school on Saturday. A few people have suggested we could just skip a week. We did miss the first week on vacation. I figured we knew the basics so it would be okay. I still don't know how to say Xiaopengyyou hao! I think it might not seem important but it is important to us right now as we try to figure out where our daughter will go to school next year. I can't fill her in on what she missed or pick up the homework for her. I tried to learn Chinese later in life and know that nothing about it comes naturally. I spent two semesters in class and still got the wrong food when I orered dinner in China. My language skills could just be my age starting to show.
Blessings,
Cindy
Wednesday, November 9, 2011
Gratitude
Three years ago today, my husband and I were sleeping in a hotel. We had just taken a plane from Beijing to Nanning in southern China. After waiting eleven months for me to turn the magic age of thirty to adopt in China, we waited almost three more years for our daughter. So, it didn't really feel real to me. The next day, we would board a bus to go meet our daughter.
When my doctor met my husband, we were just dating. She didn't say hello or anything of that sort. She just shook his hand and said, "Let me be clear. She is not going to have your babies." It was a memorable introduction and the beginning of a long road to be parents.
Today, I am thankful for my husband who agreed to go down this amazing road with me. If he had doubts about it, he never let on. When others had doubts, he didn't back down. He just waited with me and always believed that it would happen eventually.
I am also thankful for the amazing parents who made my darling daughter. I will likely never have the chance to meet them or tell them how much I appreciate the sacrifice that they made for their daughter. I believe the choice to give her another life was not so much of a choice. So, I hope that wherever they might be, they know in their hearts just how amazing she turned out and the opportunities in front of her. I hope they also know that she is loved and adored.
I don't think that you can travel down the road of adoption and not believe in a higher power. There are a lot of rumors about what happens in the match room in China when children are put together with their adoptive parents. It was divine intervention that made that match happen in a way that I could never have designed or imagined.
I am really happy to be in America today. I am grateful for the opportunity to watch Blake with my daughter and dance with my husband. I can't help but think how amazing she is sitting at the table in her pajamas that read, "I love my mom and dad" wearing a pink glitter headband. Today, she is working on cards to send to soldiers overseas, her latest craft project. Three years ago today, I was trying to sleep. I had no idea how much my life was about to change. I would do it all again in a heartbeat.
Blessings,
Cindy
When my doctor met my husband, we were just dating. She didn't say hello or anything of that sort. She just shook his hand and said, "Let me be clear. She is not going to have your babies." It was a memorable introduction and the beginning of a long road to be parents.
Today, I am thankful for my husband who agreed to go down this amazing road with me. If he had doubts about it, he never let on. When others had doubts, he didn't back down. He just waited with me and always believed that it would happen eventually.
I am also thankful for the amazing parents who made my darling daughter. I will likely never have the chance to meet them or tell them how much I appreciate the sacrifice that they made for their daughter. I believe the choice to give her another life was not so much of a choice. So, I hope that wherever they might be, they know in their hearts just how amazing she turned out and the opportunities in front of her. I hope they also know that she is loved and adored.
I don't think that you can travel down the road of adoption and not believe in a higher power. There are a lot of rumors about what happens in the match room in China when children are put together with their adoptive parents. It was divine intervention that made that match happen in a way that I could never have designed or imagined.
I am really happy to be in America today. I am grateful for the opportunity to watch Blake with my daughter and dance with my husband. I can't help but think how amazing she is sitting at the table in her pajamas that read, "I love my mom and dad" wearing a pink glitter headband. Today, she is working on cards to send to soldiers overseas, her latest craft project. Three years ago today, I was trying to sleep. I had no idea how much my life was about to change. I would do it all again in a heartbeat.
Blessings,
Cindy
Friday, November 4, 2011
Take a Deep Breathe
So, yesterday, my daughter and I decided to meet some of our friends for lunch. It wasn’t a place we usually go but we had a coupon so it can’t be all bad. We had a pretty good start to the day with a little extra sleep, a trip to big school and the gym, and a return of our extra sewing supplies. The place we went for lunch was a little smaller than most of our stomping grounds. So, after feeding five kids, we were talking when this woman sitting with two of her friends said in a very not nice voice, “Can you ask them to keep it down?” I would normally be reasonable about such a request but she caught me on the wrong day. I don't think anyone who had met my daughter would describe her as loud. Rather than saying what I think, I got up and went home. My friend’s reply made me laugh. She said, “Did she pay more for her sandwiches than we did?”
I wish I would have told the kind lady and her friends to have a fantastic day before I left. I don’t think just because you are wearing fancy clothes and I am running around in my workout clothes and eating lunch with little kids gives someone the right to be rude. On the way home, I realized most of the kids are in the same church choir. It would have been so fun to call them over to her table and ask them to sing for her their latest rendition of “Jesus teach us how to pray, ask his friends along the way, what’s in your heart, what’s in your heart, what’s in your heart today?”
Well, my red hair is shining through today. My hairdresser just suggested that I color or highlight my hair to add something. I thought it was kind of funny since a lot of people add my natural color to their hair. My Great Grandma used to always ask me what number I used and would never believe that it was natural. I don’t deny that I could spend more time on my external appearance. You didn’t read about me doing my hair up or putting on makeup on my schedule yesterday. If I wear high heels or big earrings, my daughter assumes we are going on a family date to the fancy Chinese place. However, I spend lots of time working on the inside of my body so I am okay with that. I still prefer my cardigan sweaters and I just don’t have the heart to throw out my favorite grey one missing a button. I bought a replacement but it just isn’t quite the same. A little bit of nice and normal goes a long way. I am even okay with boring. Boring is not all bad. Boring means no big house, no IVs, no drama, just a nice boring routine.
Speaking of routine, my vest machine decided to quit working earlier this week. When I called customer service and told them that I had an error type 1, the lady said, “Oh, that’s not good.” Apparently, you can fix an error type 2 but type 1 is fatal. That seems a little extreme. A broken vest to me is like what a broken car is to most people when you really need to go somewhere and your friends aren’t home to give you a ride. Of course, you have to add in the hard to breathe factor and it just isn’t really ideal. Yesterday, the Fed Ex lady arrived with a new machine, the 105, which is a bit of an upgrade I guess from the 104 and a little quieter. Today, the UPS man came to pick up the old one. For some reason, I find that I don’t run out of blog material.
Blessings,
Cindy
I wish I would have told the kind lady and her friends to have a fantastic day before I left. I don’t think just because you are wearing fancy clothes and I am running around in my workout clothes and eating lunch with little kids gives someone the right to be rude. On the way home, I realized most of the kids are in the same church choir. It would have been so fun to call them over to her table and ask them to sing for her their latest rendition of “Jesus teach us how to pray, ask his friends along the way, what’s in your heart, what’s in your heart, what’s in your heart today?”
Well, my red hair is shining through today. My hairdresser just suggested that I color or highlight my hair to add something. I thought it was kind of funny since a lot of people add my natural color to their hair. My Great Grandma used to always ask me what number I used and would never believe that it was natural. I don’t deny that I could spend more time on my external appearance. You didn’t read about me doing my hair up or putting on makeup on my schedule yesterday. If I wear high heels or big earrings, my daughter assumes we are going on a family date to the fancy Chinese place. However, I spend lots of time working on the inside of my body so I am okay with that. I still prefer my cardigan sweaters and I just don’t have the heart to throw out my favorite grey one missing a button. I bought a replacement but it just isn’t quite the same. A little bit of nice and normal goes a long way. I am even okay with boring. Boring is not all bad. Boring means no big house, no IVs, no drama, just a nice boring routine.
Speaking of routine, my vest machine decided to quit working earlier this week. When I called customer service and told them that I had an error type 1, the lady said, “Oh, that’s not good.” Apparently, you can fix an error type 2 but type 1 is fatal. That seems a little extreme. A broken vest to me is like what a broken car is to most people when you really need to go somewhere and your friends aren’t home to give you a ride. Of course, you have to add in the hard to breathe factor and it just isn’t really ideal. Yesterday, the Fed Ex lady arrived with a new machine, the 105, which is a bit of an upgrade I guess from the 104 and a little quieter. Today, the UPS man came to pick up the old one. For some reason, I find that I don’t run out of blog material.
Blessings,
Cindy
Thursday, November 3, 2011
Surrender to the Schedule
Lately, I have had some conversations about my schedule that made me realize that unless you live with me every day, it is a little hard to understand. Yesterday was a good example of a typical day although things got rolling a little later than usual. I would typically do a treatment before I get ready so I can workout when my daughter is at school but I am still on the lay low plan.
8:00 Shower and get ready for the day. Take morning blood sugar and use inhaler.
8:30 Get my daughter ready for the day and get her breakfast.
9:00 Drive my daughter to school.
9:30 Do a 30 minute vest treatment while wearing oxygen and do nebulizers 1, 2,
and 3
10:00 Do nebulizer 4 with a different machine in a different room and eat some
breakfast. Also, take morning meds and insulin shot.
10:30 Type up some notes for a meeting that I am in charge of at church tomorrow.
Email reminder to folks about the meeting to call a new Pastor.
11:30 Leave to pick up my daughter at school.
12:00 Go to the grocery and the bank. (Note to self to order groceries online.)
12:30 Put away groceries and have lunch. Hang out with daughter and return
calls. Run a load of laundry. Clean up papers the dog shredded. (Note to
self to file.)
2:30 Do a 30 minute vest treatment while wearing oxygen and do nebulizers 5 and 6.
3:00 Do nebulizer 7 with a different machine in a different room. Check blood
sugar. Make and eat afternoon snack.
3:30 Play Jr. Monopoly with my daughter and teach her how to be the banker while
playing squirrel with the dog so he will leave the Monopoly board alone.
4:45 Drive daughter to choir practice and make copies for church meeting.
5:30 Eat dinner at church since I realized that I forgot to put the roast in the
crock pot. I also forgot to cancel my standing Wed. night dinner
reservation at church so it looks like we are having pizza today.
6:00 Make dinner for my husband since Plan A didn’t work out today. It is good
that he likes leftovers.
7:00 Wait for CMA Awards with my daughter so she can see Blake. Console my
daughter after discovering that they are really on next week and explain
that Blake needs more time to practice. Switch laundry to dryer.
8:00 Do a 30 minute vest treatment while wearing oxygen and do nebulizers 8, 9,
and 10.
8:30 Do nebulizer 11 with a different machine in a different room. Check blood
sugar. Make and eat evening snack. Load nebulizers and dishes in
dishwasher so there will be enough for tomorrow. Hand wash the special
nebulizers for the special machine so they can air dry overnight. Fold the
laundry. Use inhaler and take evening meds.
9:00 Put my daughter to bed. Start again tomorrow.
Some of you might read this and wonder why I volunteer. The truth is that I volunteer for my own sanity. I have days where I think either my oxygen rate, my meds, my blood sugar, or maybe just my Mom brain is starting to get the best of me. A good example was rushing from the U this week to get my daughter to dance on time for observation day. I remembered to pack the tights, the tutu, the snack, and even the video camera. I managed to secure one of three seats in the front of the room. I was feeling quite proud of the whole deal when the video camera decided not to work. Apparently, I had plugged it in to charge it the night before but I hadn’t actually attached the battery to the camera so it wasn’t charged. The time that I volunteer helps me remember that I still have something to contribute on days when I really start to wonder.
So, while there are a LOT of other things that I would like to do and a LOT of other people that I would like to see, this is my reality. I am no longer at the point in my lung function that I can choose to miss a treatment or a vest. I have said it before but it is worth repeating. The reality is that it isn’t optional. I don’t get too far from home without a lot of gear in tow. By 2 or 3 in the afternoon, my lungs are ready and waiting for some attention.
I like to make lots of plans but when I do that, CF raises its ugly head. A good example was my plan to take my daughter to Disney World in February. Instead, I got a picc line and five months of IVs around the clock. I did make it to Florida in September but the road there was really long and we earned every one of those glorious days.
Blessings,
Cindy
8:00 Shower and get ready for the day. Take morning blood sugar and use inhaler.
8:30 Get my daughter ready for the day and get her breakfast.
9:00 Drive my daughter to school.
9:30 Do a 30 minute vest treatment while wearing oxygen and do nebulizers 1, 2,
and 3
10:00 Do nebulizer 4 with a different machine in a different room and eat some
breakfast. Also, take morning meds and insulin shot.
10:30 Type up some notes for a meeting that I am in charge of at church tomorrow.
Email reminder to folks about the meeting to call a new Pastor.
11:30 Leave to pick up my daughter at school.
12:00 Go to the grocery and the bank. (Note to self to order groceries online.)
12:30 Put away groceries and have lunch. Hang out with daughter and return
calls. Run a load of laundry. Clean up papers the dog shredded. (Note to
self to file.)
2:30 Do a 30 minute vest treatment while wearing oxygen and do nebulizers 5 and 6.
3:00 Do nebulizer 7 with a different machine in a different room. Check blood
sugar. Make and eat afternoon snack.
3:30 Play Jr. Monopoly with my daughter and teach her how to be the banker while
playing squirrel with the dog so he will leave the Monopoly board alone.
4:45 Drive daughter to choir practice and make copies for church meeting.
5:30 Eat dinner at church since I realized that I forgot to put the roast in the
crock pot. I also forgot to cancel my standing Wed. night dinner
reservation at church so it looks like we are having pizza today.
6:00 Make dinner for my husband since Plan A didn’t work out today. It is good
that he likes leftovers.
7:00 Wait for CMA Awards with my daughter so she can see Blake. Console my
daughter after discovering that they are really on next week and explain
that Blake needs more time to practice. Switch laundry to dryer.
8:00 Do a 30 minute vest treatment while wearing oxygen and do nebulizers 8, 9,
and 10.
8:30 Do nebulizer 11 with a different machine in a different room. Check blood
sugar. Make and eat evening snack. Load nebulizers and dishes in
dishwasher so there will be enough for tomorrow. Hand wash the special
nebulizers for the special machine so they can air dry overnight. Fold the
laundry. Use inhaler and take evening meds.
9:00 Put my daughter to bed. Start again tomorrow.
Some of you might read this and wonder why I volunteer. The truth is that I volunteer for my own sanity. I have days where I think either my oxygen rate, my meds, my blood sugar, or maybe just my Mom brain is starting to get the best of me. A good example was rushing from the U this week to get my daughter to dance on time for observation day. I remembered to pack the tights, the tutu, the snack, and even the video camera. I managed to secure one of three seats in the front of the room. I was feeling quite proud of the whole deal when the video camera decided not to work. Apparently, I had plugged it in to charge it the night before but I hadn’t actually attached the battery to the camera so it wasn’t charged. The time that I volunteer helps me remember that I still have something to contribute on days when I really start to wonder.
So, while there are a LOT of other things that I would like to do and a LOT of other people that I would like to see, this is my reality. I am no longer at the point in my lung function that I can choose to miss a treatment or a vest. I have said it before but it is worth repeating. The reality is that it isn’t optional. I don’t get too far from home without a lot of gear in tow. By 2 or 3 in the afternoon, my lungs are ready and waiting for some attention.
I like to make lots of plans but when I do that, CF raises its ugly head. A good example was my plan to take my daughter to Disney World in February. Instead, I got a picc line and five months of IVs around the clock. I did make it to Florida in September but the road there was really long and we earned every one of those glorious days.
Blessings,
Cindy
Wednesday, November 2, 2011
Second Thought
When I rescheduled my appointment at the diabetes doctor, I thought it was a good idea to take the first available appointment. It just happened that it was on the first Tuesday that my daughter had off of gymnastics so I thought the stars had aligned for me. I didn't take into account that it was also the day after Halloween. You really shouldn't go to the diabetes doctor the day after Halloween. It is just a bad idea. I have been having blood sugar problems without any help from Halloween candy. My numbers have been a lot higher than usual requiring corrective insulin in addition to my long acting insulin. I usually manage to get by with just the long acting insulin which we decided to increase.
So, you will find me taking a lot of shots and poking my finger a lot. My daughter asked me earlier this week if she could wipe the blood off my finger. She said, "If I am going to be a doctor, I am going to have to get used to blood." Of course, she also told me this week that she was going to be a teacher at the little school, also known as her preschool.
On another note, we pulled off the Halloween sewing project just in time for the Beast to make his debut with Belle. My daughter is already planning for Ariel next year. She told me that I can also cut her hair off because she is done with it now. Apparently, she just needed long hair for her costume.
This week finds me trying to keep a lot of balls in the air and lay low in hopes of big numbers next week. I like to think the PFT scores can only improve since they took a very ugly land slide. Of course, I am also smart enough to figure out that isn't always the case. A couple of people have asked me if the inhaled antibiotics are working. The truth is that I can never tell for sure so I try not to make any predictions. It is really a healthy coping mechanism.
You will find that I have added a way for followers to submit their email and follow my blog without having to go look for it. If you are interested, I encourage you to sign up. I have found since starting my blog that I find it difficult to answer questions in conversation because I am either repeating myself if someone has read my blog or leaving information out based on the assumption that they read my blog. So, please sign up.
This week finds me thankful for my fellow volunteers and my friends. I am also grateful for my husband who goes along with our crazy ideas even when he thinks they are crazy. I am thankful for really great medical care and really thankful that the health coach from my insurance company has agreed to stop calling me. Apparently, I can't be coached out of severe lung disease and it really isn't all up to me. At last, they are figuring it out.
Blessings,
Cindy
So, you will find me taking a lot of shots and poking my finger a lot. My daughter asked me earlier this week if she could wipe the blood off my finger. She said, "If I am going to be a doctor, I am going to have to get used to blood." Of course, she also told me this week that she was going to be a teacher at the little school, also known as her preschool.
On another note, we pulled off the Halloween sewing project just in time for the Beast to make his debut with Belle. My daughter is already planning for Ariel next year. She told me that I can also cut her hair off because she is done with it now. Apparently, she just needed long hair for her costume.
This week finds me trying to keep a lot of balls in the air and lay low in hopes of big numbers next week. I like to think the PFT scores can only improve since they took a very ugly land slide. Of course, I am also smart enough to figure out that isn't always the case. A couple of people have asked me if the inhaled antibiotics are working. The truth is that I can never tell for sure so I try not to make any predictions. It is really a healthy coping mechanism.
You will find that I have added a way for followers to submit their email and follow my blog without having to go look for it. If you are interested, I encourage you to sign up. I have found since starting my blog that I find it difficult to answer questions in conversation because I am either repeating myself if someone has read my blog or leaving information out based on the assumption that they read my blog. So, please sign up.
This week finds me thankful for my fellow volunteers and my friends. I am also grateful for my husband who goes along with our crazy ideas even when he thinks they are crazy. I am thankful for really great medical care and really thankful that the health coach from my insurance company has agreed to stop calling me. Apparently, I can't be coached out of severe lung disease and it really isn't all up to me. At last, they are figuring it out.
Blessings,
Cindy
Subscribe to:
Posts (Atom)