Doctor Day

The day started off pretty well. I managed to get up early enough to do my treatment before school. That left an hour for me to room the aisles for Santa and get back to school for the preschool party. If you need a little inspiration for Christmas, a group of four year olds will show you the way. I was in charge of the crafts to make tissue paper wreaths with their cute pictures in the middle. After school, my daughter's friends were heading to lunch and we were heading to the U. They invited her to join them so she ditched me for Burger King. I am pretty sure that she had a lot more fun.

The PFT machine (or my lungs) didn't cooperate very well this week. They are down again and are staying there against our best efforts. So, we switched things up a little bit in an effort to skip the big house for the holidays. We are trying a new oral antibiotic, a little more Hypertonic Saline which you use in a nebulizer, and more Prednisone. I am not really a fan of any of that but it doesn't involve needles. We are also back to the eat all the time plan which is really frustrating because it is so much easier to lose weight than it is to gain it. I don't feel as bad as I should feel according to the numbers but my oxygen rate is lower than it should be so I get tired fast and don't have as much energy.

On a more positive note, my husband came home from France safe and sound. He missed his connection flight and got in a little later than expected. My daughter went to greet him in her new Princess slippers. We got a lot of interesting looks in the airport. She was in her glory yesterday with his undivided attention.

Blessings,

Cindy

Deck the Halls

I managed to find the decorations and they saved me yesterday. It ended the crying about missing Daddy and moved us right into how we "needed" to put them all on the tree. So, we have officially decorated and I must admit that it does look more festive.

I thought the stars were aligning for me when my daughter fell asleep early on the couch last night. Then, I realized that it was up to me to carry her to bed. I did think about just sleeping on the couch with her since it is big and there is plenty of room. After I managged to get her to her bed, she woke up and was not at all happy about how I thought she might want to go to bed early. I will be very grateful when her Daddy is back home again.

This morning, I spent my preschool time with my trainer. I have a few weeks off while she is out of the country for the holidays. So, I will be left to my own devices. This is a bad plan. So, feel free to call me and ask if I have worked out yet today.

Today, I am thankful for my friends and family who work to keep me very distracted and well fed. We have had a lot of fun lunch dates this week and calls for no apparent reason other than to keep us busy. I was at dance last night when one of my friends called to drop off my dinner. She claims she forgot to put onions in one pot of her chicken noodle soup so it was meant for my family. First of all, who does that? Secondly, who knows you and your schedule to track you down so they can deliver it? This week I am also thankful for my fellow volunteers who understand that my daughter and I are a package deal and don't mind having her join our meetings on short notice.

Now, on to the Christmas cards...my husband gets all of that credit as he created them for me. I am really grateful that he is safe and sound despite the crying on this side of the ocean.

Blessings,

Cindy

Christmas Spirit

So, my sister tells me that it is December now. I am in total denial. I do have a tree in my living room thanks to my family who put it up in hopes that I would find the decorations. I also managed to make someone else's cards but not my own just yet. That is really just silly since I paid a mint for the darling picture in September. Well, it wasn't exactly a mint but enough for some of my friends to make fun of me and question my spending habits. I do have a few presents thanks to my sister who took me shopping at her request. Of course, they don't have any actual wrapping paper on them just yet but we have plenty of time left for that.

Last week, we had a designated holiday at our house. I declared it to be Get Your Life in Order Day. It went on for three days and things are still about the same. It isn't really that we are out of order all the time but we get one thing handled and a new thing seems to take its place.

Yesterday, I got a shiny, new oxygen machine. There are better presents in the world but if you spend a few days with a machine that beeps at you for no obvious reason, it is a relief to get a new one. I determined that I must not be on top of my game when I decided not to do something fun with my friends on the weekend. I could just use one less thing to do even if it is something fun. I also took it as a sign when my mom aborted our original plans yesterday so I could go back to the comfort of my couch. I never said anything so I must not have looked so great.

It could be said that our house is a little blue. I do like the color blue but not actually being blue. We are wrapping up a few projects which should help my color perk up a little and I have lost my sporty Sea Bands so that is promising. Of course, some rotten pleurisy has come to visit and the best word to describe that is just mean. It arrives without warning and hangs around at inconvenient times.

Tonight is my daughter's dance recital so I imagine that will help my holiday spirit get back in shape. My daughter convinced me that we really needed the new holiday dress with the fur on the bottom and the end of the sleeves since we already had the matching tights. I have to admit that it is darling but my dog thinks she is carrying around a bunny and he is not at all fond of it.

Today I am thankful for my dear friend who sent me home some yummy dinner to eat next week and a new book to keep me distracted. I am thankful that she is a good cook and a little disappointed that the dinner is already eaten. I am also really grateful to some of my friends who gathered together to help have a fun party for our friends who are heading out on their next adventure. I am very relieved to have two days free of going to school and answering questions about when they will be back. As usual, I am thankful for my wise doctor who keeps me on the straight and narrow and reminds me that it might not be the best idea to run away to France. Lastly, I am thankful for my dear husband who is just one day shy of managing to survive ten years of dealing with me in his life. He claims it was a lot less interesting and I imagine a lot less complicated before he met me.

Blessings,

Cindy

Doctor Day

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

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

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

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

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

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

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

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

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

Doctor Day

Doctor Day came and went again. I am back on the every two week schedule. My PFT scores were not at all impressive. I chose the least agressive of the options, inhaled antibiotics. We are trying two at one time to see if they work their magic. I have a good track record with one of them so hopefully it will do the trick. Of course, that means that we are going from 6 nebs a day to 11 nebs a day. Depending on the medicine, it takes 5 to 15 minutes per neb. You can do the math and figure out it is not really pretty.

So, we need things to bounce back. Until then, I am skipping the trainer on Monday and trying to elminate stress. Apparently, my little body has enough stress all on its own. My oxygen rate is also not cooperating making me a little more tired than normal and a little slower on the stairs. My trip upstairs at my house is usually the first sign of trouble. I used to think it would be better to live without them but it does force you to exercise if you want to sleep in your own bed.

Today went a little better with a fun field trip for my daughter's Chinese class. We never did find the school bus with all of her friends but it was a great day to get some fresh air and take a walk. Just as I got to the end of the Trick or Treat Trail, I started to wonder if it was such a good idea. I made it all the way out to the maze which was not short trip. Then, a nice man pulling the train appeared. I told my husband, "If God sends you a train, you should get on."

Blessings,

Cindy

Go Away!

About the time that I realized that I had a low grade fever last week, I also noticed my husband had called my cell phone five times while I left it in my car. He was getting shipped out for work in two days. He would just be gone four days and three nights. Of course, you can't tell my daughter that. Her biggest concern about his travels continues to be who will kissie us to go to bed. I tried to convince her that a trip to Ohio was a lot better than being sent off to Germany or India or Mexico for weeks on end. (It is fair to say that I would never make it as a military wife.) She doesn't see it that way at all.

So, today, as I was trying to lift the weights that my trainer lovingly provided, I decided it was time to make some changes. I like to volunteer but I need to work out. When I don't feel good which is more often than I like to admit, I don't have the energy to execute all of the shoulds in life. Everyone has them. I should call so and so after I plan some meals so I can stop at the grocery. Wait, I forgot my deposit at the bank and now it is time for crafts according to my daughter. This is the way a typical conversation plays out in my head. Of course, at the end of the day, I hate the big blue X on my calendar if I don't work out. It is fair to say that I am a self imposed overachiever who is failing in some regards.

This weekend, I got to spend lots of time hanging out with my daughter and her best friend. I prefer to spend more time having fun and less time cleaning or trudging through the grocery store especially when the snow flies. So, I am going to find out if my cleaning lady really moved to Hawaii or just thought I was too much to take on in her life. (Who can blame her really?) I am also going to utilize my coupon for Coborn's and see if a weekly delivery of groceries makes any difference in my cooking or my energy level. They want to deliver me groceries for free for 3 months. I mean why would anyone turn that away.

So, this is me putting the green germs on warning. Go away! I am tired of you. My petite body is tired of you. My darling daughter helped me pick out work clothes that are in "fashion" so consider yourself notified. (She claims she has a good "fashion sense.") Please go away! I have four days to make you go away and I would like you to cooperate.

Blessings,

Cindy

Sing

I go back and forth between loving and hating Facebook. I spend way too much time keeping up with folks that might not recognize me if I picked up the phone. Today though it served me well. Based on a friend's post, I checked out the classic country music at the Pandora website. It was not only a great suggestion but they include lyrics as the music plays. So, while I sang along to "Mama's Don't Let Your Babies Grow Up To Be Cowgirls", my daughter looked at me like I had lost my mind. She also corrected me to remind me that it is cowboys, not cowgirls.

I have a good friend who is fond of saying that I am a little bit country and a little bit rock and roll. It is really a pretty good description. Of course, he knows where I come from and some of my people so he might have extra insight. After my daughter started to dance today and clap along to my latest discovery, I concluded that nurture might have more to do with how kids turn out than we like to think.

We were having such a good time that I offered to show her Kenny on Youtube. On our way to school today, she wanted to know if Kenny looks like Blake. (That would be Kenny Rogers and Blake Shelton, her favorite singer.) When I showed her the very old video of Kenny, she said, "Oh, he's handsome." I mean a girl just can't make this stuff up. She wanted to know who the girl was singing with him. I responded, "Oh, that's Dolly." She said, "Is she a dolly to play with?" "No, she is a real girl, Dolly Parton."

A few years ago, my former doctor was explaining to me his theory about singing. He had a set of twin patients with CF and the one who was in a band and sang for several hours a week had better lung function than the other twin. He thought maybe I should join the church choir or sing on my commute. Obviously, he had never heard me sing.

This is the same girl who pooled her money with my friends in high school so we could drive the 30 minutes to the only place near my house that let kids under 21 come to dance once a week. I am also the same girl who could be found at the local jazz club in college grading high school English papers. I can guarantee that the owner, Eddie, still knows my preferred drink of hot chocolate. I am also the same girl who brought my daughter home in November and the following summer bought her a concert ticket at two years old to see my friend, Randy. She still thinks that I am close, personal friends with Randy Travis.

So, today, I was reminded to sing and dance a little more often. My friend was visiting yesterday and noticed that I have a disco ball in my basement. Apparently, that is a little odd. It was my daughter's first Christmas present to her dad. Of course, she had a little help picking it out. He still would rather not dance but he knew that I couldn't marry a man who won't dance so he learned. You wouldn't think sharing your new album or passing on a good internet tip is an example of prayers in action. However, I would beg to differ and suggest you check it out for yourself. It really is too much fun.

Blessings,

Cindy

Shake, shake, shake

After sharing my morning oatmeal with my dog, I was off to Zumba. I was successful in securing my position in the back row and grateful to God that I didn't know a soul. The first fifteen minutes went by before I realized that I didn't have any ID on my body. I had locked my purse in the car along with my inhaler. I tried to remember who knew that I was at Zumba and who would pick up my daughter if I didn't show up. I had told my friend at preschool where I was headed and talked to my sister just before I left so they would figure it out.

My next thought was that I talked to my grandma this morning and she would be mad if I died at Zumba. I call her faithfully every week and she asks every time if I am coming over today. I agreed to come visit next week when we have a few days off school. After arranging a day that didn't interfere with her weekly hair appointment, it was not going to go over well at all if I didn't make it.

Earlier this week, my trainer told me that I was getting stronger. At first, I thought that was good news. Then, I remembered that I pay her to tell me such things. The Zumba instructor caught me after class to tell me that I did a good job and encourage me to come back again. I can't help but wonder if I really look like I need reinforcement or if someone is calling ahead.

Today, I am thankful to still be here. I am also releived to have secured my Halloween costume. My daughter clapped her hands in delight when I tried on the Snow White costume for her. She promised to remember that I did this on her behalf. Then, she encouraged me to get the matching magic wand and fancy headband. She claims that I "need" them. I am also grateful for my friends who keep me on the straight and narrow and remind me to eat my protein. I found a new freezer meal cookbook on this week's adventure to the library so we will see if it helps our cooking ambitions.

Blessings,

Cindy

Beware of the Peacock

My blog could really be a blog about the trials and tribulations of my exercise plan. Last week, I bid goodbye to my family as I set out for Zumba. I quickly discovered one of the complications of having two gyms. I went to my usual gym but Zumba was at my new gym. Apparently, I need to include more details when I plan my weekly workout schedule.

Today, I set out for a new yoga class. Some of my friends were getting together during preschool but I stuck to my schedule. I should have realized that I might be in over my head when I saw the instructor. He had a bandana tied around his head and was ready to lead us. I held my own until we reached the full peacock position. If you want a good laugh, you should really look up a picture of it. Basically, you support your body on your forearms while your feet are pointed in the air. Of course, most instructors offer a modification. I knew I was in good company when the lady next to me started to laugh. You could also put your arms in between your legs and support yourself with your toes pointed out. Needless to say, I was very relieved when it came time for ten minutes of meditation. You are supposed to silence your mind but I couldn't help but think this would all make really good blog material.

Later this week, it is back to Zumba. So, prayers might be in order this week. I also got a note home from the teacher about helping at the Harvest Party. It read, "you are welcome and encouraged to wear a costume." I can only imagine what my darling daughter will come up with to go with Belle. I thought I was going to get off easy since she picked her Dad to escort her as the Beast.

Blessings,

Cindy

Choose Calories

Every so often, it hits you when you aren't ready. I was sitting at my kitchen table opening the mail last week. My daughter was sitting next to me making "cookies" out of play dough. In my mail, I had a copy of the most recent newsletter from Help One Love One, an organization that supports patients with CF with gift certificates for groceries. I know first hand the power of a few calories so I try to support them when my budget cooperates with me. In this particular letter, they were sharing the loss of a CF patient who had been getting some support over the past two years. He was 28 years old. Help One Love One is based in rural Minnesota and Max got care at the same clinic that I visit often.

Life expectanccy is not a really fun topic. When I was younger, I thought the average life expectancy for a patient with CF was far enough away. I noticed that the statistic is no longer on the Cystic Fibrosis Foundation website. I doubt they took it down just for me. In 2000, the average life expectancy for a patient with cystic fibrosis was 32. In 2008, the average was up to 37.4. Each year, my mom is very good about looking at my birthday as a modern day miracle. I, on the other hand, tend to hold my breath and hope we slide through another one without notice.

So, this week, I am busy trying to choose calories. My routine is back on track for the most part and I think almost no one is reading this blog so I can freely tell you what I really think. I called last week in hopes of joining an upcoming clinical trial. I was told that they are taking two patients at my clinic. I guess I shouldn't put all my hopes in the magic drug basket.

Blessings,

Cindy

March On

I managed to survive Doctor Day and come out the other side. When I wrote my last post, I was filled with dread. A week of bad food, little exercise, and a lot of crying from my daughter left me feeling less than encouraged about my visit. It is fair to say we are back on the exercise circuit. I did manage to find an extra day to work out by joining a second gym. (I am the only person that I know who belongs to two gyms.) My kind friend pointed out that I had my workout clothes on today so that is a good sign.

It is fair to say that I avoided disaster several times last week. I was saved when my car decided to quit on me again. (My dealer is currently selling a blue Mustang but it is a stick shift.) I managed a visit to my friend, the dermatologist, and was elated after a trip with someone else to the doctor. The only problems still pending are the new mixer that blew up on our first use and our need for a new roof.

Today, I was reminded that there are good people in the world who really are willing to help and you really don't have to do everything yourself. I apparently need a lot of reminders. A few years ago, I gave up my position as the Class Agent for my graduating college class. I had just planned a class reunion and my attempts at two letters a year were rarely met on time. In the latest letter, one of my classmates was kind enough to thank me for doing it for so long. It continues to be carried on by a very smart, talented woman so there is really no loss except one less thing for me to do.

Blessings,

Cindy

Good question

A few weeks ago, a friend sent me an email that simply said, "Do you think it would be insane to adopt as a single woman?" My immediate response was that I would do it in a heartbeat if my situation was different. This week has me trying out life as a single parent and I think it is fair to say that it isn't ideal. At least, it isn't ideal for me.

My husband is busy a lot of the time between work and his nasty commute. The rest of the time my daughter keeps him busy. It might be at the pool, on the swing, or reading yet another princess story. The point is that we appreciate him a lot. A week on our own tells me that we should appreciate him more. My darling daughter is getting better as the week goes on. At the start of the week, she went to bed crying and woke up crying. She tells me that her heart hurts. She was even brave enough to tell him to "come home right now!"

My husband is racing this week. We know he loves it. Personally, it makes me want to throw up on my shoes. One of his relatives pointed out that I knew he was a race car driver when I met him. She is right but there is a difference between knowing and experiencing it. It only took one race for all of us to figure out that I was not the most stable addition to the team. He married me anyway.

As life went on, things got a little more complicated. Now, there is grass to mow and a roof to fix. My darling daughter can't understand how Dad could miss a socccer game since he is one of the coaches. The stakes are a little higher. It is one thing to fly your girlfriend across the country and quite another to listen to your darling daughter crying on the phone. So, today we wait. Just one more day.

We are also going to see my favorite Doctor today. I can't imagine what on earth I might have been thinking when I scheduled this appointment on the eve of the biggest race of the year and at the end of my stint as a single parent.

Blessings,

Cindy

Reality check

I apologize that it has taken me a week to share with all of you that Disney was spectacular! A lot of people told me to wait until your kids are older so they will remember it. I totally disagree having just arrived home. My daughter might not remember it but her face was priceless. She loved it and the sight of my Cinderella in her full gown on the shoulders of her Prince Charming is one that I will remember long after I am an old lady.

As for trying to avoid becoming an old lady, I have to say that reality is brutal. We were home for a total of 45 minutes before we went to our friend's very fun birthday party. On our way home, we went to the grocery where I realized that I didn't put my debit card back in my purse. (You can just have Prince Charming cover your purchases when you are at Disney.) By the time we worked that out, it was time to go home and get ready for school the next day.

My daughter has done very well adjusting to the regular routine and a new teacher. I am another story. At Disney, your car doesn't decide not to start at the Delta check in gate. (The airport security boys do not apprecciate that at all.) You also don't have to be anywhere other than a dinner reservation. Other people cook and serve your food. They do the dishes too. Someone made the beds and someone else even drives you where you need to go. It is a little bit of an adjustment.

I am very thankful to my dad who moved in to take care of my dog. My mom also took a turn taking care of him and my friend came to visit in between their visits. Hank is still alive and well but he was very happy to see that I replenished his treat supply. Disney does not sell dog bones and I think they are really missing the market. I am also grateful to my friend who bailed me out this week and my mom who covered for me so I could volunteer a few hours. In addition to having lots of fun, I have called in a lot of favors lately and am quite sure my account is in the negative by now.

The man at airport security asked whose machine was on the belt as I was trying to leave Minnesota. I explained that it was mine and I had a nebulizer, a vest, and an oxygen machine. He replied, with love, "You are a nightmare!" That pretty much sums it up.

Blessings,

Cindy

Procrastination

There are a host of things that I should be doing right now and none of them involve updating my blog. This week, I am getting ready to set out on a new adventure but I secretly have a heavy heart. My daughter's best friend is getting ready to move across town and start Kindergarten this week. The going off to school part is bad enough but the move across town makes me sad. It is for all the right reasons and there is nothing to say that we can't join them but it brings about a lot of change at our house.

I might be handling it better if my daugther's other best friend was not contemplating a move across the country. Again, it is a great opportunity and a move for all the right reasons in the long run but the short term is hard on the heart. I have no room to talk as I have moved to another part of the country on more than one occassion. I think I would handle it all a little better if I could fly more easily. I am still trying to make it to NC and I am quite sure my name is muddy in OH by now.

A few of my friends from college are trying to plan a fall adventure. I gave the one date that we don't have Chinese class and they are working out a location. It is just a little hard for me to plan. I am all about getting together as long as I am healthy and stay healthy. I can still remember my friend's voice when I had to cancel the trip we planned for our 30th birthday. She was a trooper and drove to my house arriving very late at night as she said we were going to celebrate anyway.

So, for a few days, we are going to pack up and relish in the fantasy that vacation has to offer. I hope to leave my heavy heart at the airport and try not to pick it up when we get home. Your friends really are your friends wherever you live. It just takes a little bit more effort and a good phone plan.

Blessings,

Cindy

Presents

I have received a few fun presents latetly. First, I called to find out how to order a rolling bag for my vest. I heard there was such a thing and since the zippers ripped out in my old traveling bag, it was time to upgrade. While I was on the phone, I mentioned a problem with my electrical cord. It turns out a lot of people had the same problem and they offered to send me a new machine at no charge. The rolling bag was part of the package.

Now, I can vividly recall my parents making payments on the original vest that took up a good portion of my living room. It was large enough that it couldn't fit in a car and cost more than any car my family owned at the time. My dad eventually brought it to college in the back of his truck.

My next venture was to find out how to have oxygen tanks delivered to Florida. I figured it was best to start with my oxygen company here as I can't imagine that I am their first customer who wants to visit Mickey. As it turns out, they offer a portable machine that turns the air into oxygen without having a tank. They also provide it for two weeks a year to their customers for free.

I also had my last trainer appointment at 7 a.m. this week. We are moving to a schedule that works much better for my sleep schedule and works around preschool. I managed to hang out with some of my nieces this week and keep my good name as I upheld a promise that I made and forgot. Apparently, ten year olds remember everything!

Today, I am thankful for our Barbie house that provides so much entertainment. I am also thankful for our bikes and our friends who donated their bike trailer that bring my daughter and my dog back and forth to the park. This week, one of my friends with CF had some good news and he was overdue so I am especially grateful.

Blessings,

Cindy

The Slide

Today found me at the U for Doctor Day. My graph was so beautiful last time that it is a little hard on the heart. I gave it a good five blows but it could not be replicated today. The results were still respectable but not nearly as much fun. On a more positive note, I gained a little weight making me feel less guilty about my indulgent pattern of eating out this week.

I was reminded of the slide. I made a few fun choices this week. I decided to go visiting and missed a vest treatment. One out of 21 isn't bad but it is still one. I decided to play Bunco with my friends and skip a trip to the yoga studio. One trip doesn't seem like that much but my shoulders and my tendancy to fold myself into vest position can tell.

My doctor equates my situation with a duck floating by you. On the top of the water, everything looks great. If you looked under the water, you could see the duck paddling as fast as possible. It is a fair example. It is easy when you are feeling good to have a little fun and justify one vest treatment or trip to workout. However, you don't want to feel bad. On the other hand, you might argue that it isn't all in your control. However, if you get sick, you want to be able to say, "I did everything in my control."

A friend posted a quote today that sums it up, "If it's important to you, you'll find a way. If not, you'll find an excuse." So, I have the all clear to go visit Cinderella and her many friends. Although, I will be traveling with a few extra meds just to cover myself and make sure my good luck doesn't run out. I also intend to find a way to love my treadmill or find a friend who wants to walk with me.

On my return to water aerobics, I ran into my nurse in the pool. I took it as a sign from God. This is the same woman who drew my blood at the kitchen table and changed my dressing every week. She usually managed to arrive just after I took my daughter to preschool and leave before she got home again. So, I can take a gentle reminder. I get it. We don't want to slide.

Blessings,

Cindy

Projects

Well, we have just arrived home from another fun lunch out with friends. I had plans to go bowling today at 3 but our friends had plans to go bowling at 11. I figured that it might be a rough day when I arrived with my darling daughter in her swimming suit at gymnastics. She said, "Mom, what are you doing?" Okay, maybe we should try next door for our lessons instead since they have a swimming pool. We are going to spend the rest of the day working on our latest project.

For those of you following our progress, the shelves in the office are up. I read this great blog about collecting all the papers in your house in a basket to eliminate the clutter. There is now a basket holding many "important" papers in my office. I should go on record in sharing that a paper has not moved from the basket. So, the office is a work in progress but it is just too nice to work on more paperwork.

A few weeks ago, we moved my vest to the basement which worked really well until company came. So, we moved it upstairs and back to the basement again. We have turned the former "baby" room into a yoga studio which brings us to today's project. We are trying to get rid of all of the baby clothes. It is no small task but thanks to my friend's tagging gun, it is going faster now. We plan to sell out at an upcoming consignment sale so if you are in need of size 2, you should speak now before its too late.

Lastly, we have been working on clearing out the recipe box and trying to eat at home. This project isn't going so well this week but I can see the scale in my future so the calories from eating out really help out. We tend to make healthier choices at home which is good unless you want to keep your weight up. I also just discovered someone else's blog which gives her menu for the week, her grocery list, and the related recipes. Did I mention that my recipe box is already overflowing?

As the countdown to Cinderella continues, we are trying to get a few things in order. Well, some of us are trying. My daughter is currently stirring the confetti that she made with her Great Grandpa this week in her kitchen. How long do you think all of that confetti will stay in the pot?

Blessings,

Cindy

Thank you

My darling girl was sick today so we had a lot of time to lay low. I started the day with a visit to my trainer and signing on for four more months. My cleaning lady has taken a summer sabatical so the trainer is back in the budget and my house can tell. On my way home, I went by CVS to get a new thermometer before my husband left for work. The lady working today was at CVS the day that I made copies of my daughter's referral pictures.

We hadn't expected the darling photos in the mail when they arrived almost three years ago. I got a call on my way to work. When I called my husband to tell him that we were really having a baby, he thought my car had broken down. I had to sit through a meeting at Panera and drive to my office before I could see her darling face. We spent the night eating Chinese food and hand writing the announcements. The next day, I spent the morning at CVS making copies of her cute picture and mailing them to her grandparents and aunts and uncles who were also not expecting them. We wanted all of them to have the same experience as we did when her face finally arrived in the mail.

Every time I go to CVS, the same woman asks how my precious girl is doing and how she can't believe how big she is now. She always asks where she is if I happen to come in alone. When I explained that she was home sick today, she said, "Well, you must be feeling better. You are looking good." Can I just say thank you very much? I also have to wonder how bad I must have really looked when the kind lady at CVS is noticing a difference. However, she never pointed out that she noticed and that is a lesson worth passing on.

Blessings,

Cindy

Progress

I got this bright idea yesterday that maybe I could do PFTs today and not go to see the doctor next week with my daughter in her pjs first thing in the morning. It was a long shot but it doesn't hurt to ask. So, I called and I waited. This morning, I got a call that I could do PFTs at 11 and if the results were positive, I could take a two week break from visiting the doctor office. If not, I could just keep my appointment as planned.

We have had a busy week around here so I wasn't too sure if this was really such a good idea. My daughter and I hurried to get ready and postponed our plans until later in the day. The results were 5% of increased lung capacity. It might not sound so impressive. It isn't double digits or anything but I have found that lung capacity only falls double digits. It rarely ever goes up and certainly very slow at least for me. This charts territory that we haven't seen since November 2009. I was told that it is reflective of exercise.

So, you will find me at water aerobics tomorrow and yoga on Sunday. By Tuesday, I will be back at the trainer. Please don't take it personally if I sound a little crazy about exercise. Progress is slow but it sure makes for a beautiful graph. I am also motivated by lunch with Cinderella in a few weeks. My daughter picked up her matching dress today and asked why we couldn't get one for me too. Now, that would be a sight to see!

Blessings,

Cindy

Run

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

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

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

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

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

A new day

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

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.

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

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

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

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

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

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

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

Slow and steady

The last of my company left this morning and moments later, the nurse arrived. I am back on the regular nurse schedule so I have one of my favorite nurses which makes such a big difference to me. It really shouldn't matter but it is nice to have the same person messing around with my arm. We were just getting a blood sample today to see if my INR was back on track and being cooperative. We also changed the dressing in hopes that I could go to my daughter's ice cream party on Thursday for the last day of school.

My nurse was supposed to come back on Thursday to draw pre and post IV blood to check my drug levels. In the end, we had it moved to Wednesday. My line is running slow so two hours of IVs turns into three hours three times a day. Some medicine is being sent out for my line in case it decides to stop running all together. The good news is that I won't have to miss the "mommies" invitation to school. We have "big" school tomorrow and "little" school on Thursday before summer break starts.

My dog has been busy trying to walk me instead of the other way around. After my treatment today, we tried to see if we could get a little further before hanging it up for a morning Diet Coke. While I sound terrible, the walking does help shake up the junk. I am looking for some fellow walkers so if you are up for short walks that involve investigating the neighbors flowers, just let me know.

I am also looking for a few volunteers to learn how to hit me by hand. There is an actual technique rather than just hitting me. It only takes a few minutes in the problem areas but I am hoping to train a few others who might be around if my husband is at work. I didn't think to have my mom train my friend over the weekend.

I just got up from my afternoon nap but my daughter and dog are both still sleeping so it must have been a big day at school. Today I am thankful for the offers to help me with food, the yummy treat delivered to school, and the promise of more soup if it doesn't get better. I am also thankful for the CF office who helped me figure out that I don't really have two appointments on Friday. It is an appointment this week and an appointment next week. I guess it is too early to be hoping for a promotion.

Blessings,

Cindy

Doctor Day

Doctor Day didn't go so well on Friday. I had my bags packed and my family along to head to the lake after a quick visit to the doctor. I should really quit making such crazy plans because it didn't work out that way at all. After my PFTs (pulmonary function tests), we established that I wasn't going to the lake. The question remained whether I would be camping at home or in the big house. After a trip to x-ray, we determined that my problem wasn't actually pneumonia which bought me a ticket back to the blue couch.

While I was very thankful to be liberated of a trip to the big house, I was not at all happy about my family heading north without me. It was made worse by my daughter's attempts to be brave (and sleep without mommmy) and a lot of crying and telling her daddy to turn around. They survived the weekend without me, well, sort of. The car had problems and didn't run and my husband came back with an injured ankle.

There were several bright spots in the weekend. My friend tried to distract me on Friday afternoon and brought my dog back to me to reclaim his spot on the couch. My other friend arrived about as my last IV ended on Friday to help me out for the rest of the weekend. We managed to eat some good food, watch a funny movie, and work on a project. My mom arrived on Saturday with chicken dumpling soup in tow.

As I type, I am waiting for the last IV to finish so I can go to sleep. We added a new IV (or actually brought an old one back) to the routine. This means we are up to 4 vests a day and 6 IVs. My picc line is running a little slow so the IVs should run for 6 hours but it has been taking more like 9 hours. We are trying to recreate life in the big house while maintaining life on the outside.

Blessings,

Cindy

Sleep

On my last post, I was feeling a bit more optimistic. Today my lungs are full of gunk or achies as my daughter refers to it. It started with a headache on Tuesday and continued from there. I always know things are not going well when it is waking me up at night. I think sleep is one of the things that I covet most. By the time yesterday rolled around, I was laying low and watching Oprah.

Last night, I put my daughter to bed and set my alarm for midnight. I got up to put my IV on and set my alarm again for 1 a.m. When I woke up again, I found that I forgot to open the clamp on the IV. So, I set the alarm for 2 a.m. to shut the IV off again. By this time, I had woken my daughter up who realized that I was sleeping in my bed. I usually put her to bed and then sneak out. So, I had a really long night. Today, I feel like I had way too many drinks last night. I don't drink so that isn't actually the case. My blood sugar was also running high on Wed which is not ideal and makes it more difficult to fight off infection.

When I got up today, the nurse arrived at 8 a.m. for my first blood draw and dressing change. He was back again at 10 a.m. for a post IV blood draw. So far, I have accomplished dropping my daughter off at preschool and turning on the dishwasher. It isn't a very impressive list. Now, I am off to do another vest. After that, we might have time for a nap before preschool pick up. I usually have a pretty good attitude but I am not at all looking forward to PFTs tomorrow.

Today I am really thankful to the friend who agreed to watch my dog the next few days. I am also grateful to my friends who don't expect me to sugarcoat it for them. I am always thankful for my darling dog who barks way too much and waits for me to move my IV out of his way so he can sit by me on the couch.

Blessings,

Cindy