Lunch!

We are still enjoying spring break around here! Today we went to lunch with a friend and I have to say that I so appreciate eating out once in a while. We went to our favorite Chinese place. The food was good and the company was good not to mention that we left the dirty dishes behind. We spent this afternoon playing with another friend before dance class. I really appreciate the friends who don't care if your house is messy or your daughter picked out your earrings again today.

I said no today to one of the things on my not to do list. It seems obvious since it is after all on the not to do list. If it is on the list, it doesn't make it any easier to say no. It is a lot harder to stick to the list than you might think. I still have this false sense that I really can do it all. There are a lot of things on the not to do list that I would really like to do. I just don't have enough time or energy without running up against other priorities right now. I guess that is really what it is all about. You have to figure out what the priorities really are and how you are going to break it to folks kindly that you just can't do everything you or they would really to do.

I mentioned before that I appreciate people who invite me. I also appreciate people who invite me again even though I have to say no sometimes. I am trying to quit explaining myself. It gets really old to talk about being too tired or having to be home by such and such time for the next treatment or IV. Some people just get it and they don't take it at all personally. I do get a lot done but most of it is within a few miles of my house.

I was telling a friend lately how I like to make a list and postpone things that can wait until my IVs are done. For example, this is a four week run. Well, it was a four week run. I had this great list of things to do for weeks five, six, and seven. The problem is that a four week run is turning into a seven week run and even that is our very best estimate. So, please do invite me (especially to lunch) but don't feel bad if I can't always make it.

Blessings,

Cindy

Smile

God is so good! I told you about dropping one of the balls in the air earlier this week. My sister pointed out that I was rather vague in my story. Well, it was the reason I bought extra dance tights to be on the safe side. My daughter's dance class was having pictures on a Sunday afternoon to have printed in her recital program. The Sunday in March came and went again without notice. I told my friend that I just didn't think I was cut out to be a dance mom. My daughter is all about it but I would gladly do something else. Well, I was noting some things in April on my oversized, obnoxious calendar when I noticed that it said dance pictures on a Sunday in April. After further review, I learned that big girls had their pictures done in March and our pictures are really in April! You can be assured that we will be there with our extra tights in hand.

I am very thankful to my friends who assured me that I wasn't really losing my mind. I think it is easy to let the details of life get in the way of all the important stuff. We found our calendar really helped our family life after I scheduled us to attend a wedding and my husband registered for a race on the same weekend. We don't disagree anymore about who told the other one about what was going on and we can visually see when things are getting a little crazy!

For those of you who follow my coupon ambitions, you can get 10 double coupons at Rainbow Food on Saturday of this week. I will warn you that it is a little addictive. My daughter and I went after swimming today and she was counting our coupons. I am looking forward to getting some errands done later today and very much enjoying spring break. I am especially thankful today to my friend who is helping me with some shopping.

Blessings,

Cindy

Be the matchmaker

I only have two accounts of being a matchmaker that are still going strong. I can't really take the credit for one couple as I just invited them both to the same place. I assured my other friend that if he asked my friend to prom, she would say yes. He really already had the idea but he needed a little help. They have three kids now. I have many failed attempts but we will leave those out of the story. I am thankful for the matchmakers in my life. It might be just introducing someone to a new friend or a garden partner. It doesn't have to be matchmaking in the traditional sense. Although, I am currently looking for a husband for my darling friend. I have a list of qualifications if you have anyone in mind.

I woke up this morning to find a note from my husband who had mixed my morning IVs for me. I have to mix six of them a day and he likes to do it for me if he is home. I overslept a little so it was really helpful to find them already mixed and waiting for me. It will be 10 years this December since our matchmaker decided to introduce us. I had my sights set on moving back to Minnesota. I had the dates set of when I planned to give notice at my job, move my stuff, and start my new job. I was still looking for the new job but the plan was in full swing. My friend called to ask if I would just meet her brother first. I think this is one of the best examples in my life of God working through other people. He had a different plan.

Blessings,

Cindy

Not to do list

A few years ago, I had the opportunity to read Jim Collins' Good to Great with a group of really smart people. We met monthly to discuss different topics from the book and apply them to our work. My favorite concept in the book is the idea of a not to do list. Collins found that really great companies had a list of things that they were not going to do or pursue. It was a lightbulb moment. I have revisited my own not to do list many times. I am a lot better at making to do lists followed by charts and some diagrams.

This week, I am working on my not to do list again. I drafted it last week but a few things keep coming up. I almost waivered today on one of the items. The great thing about the not to do list is that it gives you time for the things that you actually want to do but can never accomplish because your to do list is so long and simply unrealistic. It also helps you say no when you should say no.

The rest of the day finds me digging out of the remaining items for an upcoming kids consignment sale. My wise friend agreed that we were not going to have a garage sale. My goal is to remove 200 items from my house. If we make a little money, it will go on the mortgage. I have a lofty goal of liberating my life from my mortgage. It is a ways off but I like to think about it. It reminds me of my very expensive college education which I still adore but left me in student loan debt. This week finds us having a little extra time due to spring break.

Menu Plan Monday follows:
Monday-leftovers (thanks to Sunday)
Tuesday-sandwiches on the run to deliver our consignment items
Wednesday-hamburger gravy
Thursday-chicken and dumplings (postponed from last week)
Friday-a trip to the Ugly Mug to hear one of my fellow moms and her band

What are you cooking this week? Better yet, what is on your not to do list?

Blessings,

Cindy

Catch the balls

I was feeling very relieved on Friday for my latest procedure to be complete. I couldn't move my neck very well but it was over. My friend helped get me to the U so my husband could make an early morning meeting for work. She also kept my daughter for the day on very short notice. Another friend brought dinner for my family. She has plenty going on in her own life without bringing my dinner. She even brought ice cream cones which was a huge hit!

Overall, things were going pretty well and then I checked my email. I thought I had been keeping all the balls in the air. Four days had passed since I dropped one and I had no idea. Of course, I did have a lot going on but it didn't make me feel any better. It was one of the many balls that relate to my daughter. Most of you know that I take my mommy role very seriously so this was not the one to drop. Within minutes of figuring this all out, my friend called. She had an idea to fix my problem.

Today, I had the good fortune to sit in church and watch my husband serve as an usher. After the service, I got brave enough to move out of my safe spot towards the back and introduce myself to someone new. I knew of this particular man and some of his health problems but I had never formally met him. It turns out that he had the same doctor that I had as a kid and also has CF and CF related diabetes. I knew he had similar challenges but I didn't know he had CF. The chances of us attending the same church and actually figuring all of this out are so slim that I think it has to be divine intervention.

Blessings,

Cindy

Bring a Book

I love the sight of my husband's Camaro pulling into the circle drive in front of the U. I am happy to report that my last crazy test is done. Well, I am sure it won't be the last one as they always come up with something but it is the last one that I know about for now. I had a lung perfusion test this morning and a right heart cath. I was told I would get sedation during the heart cath but it wasn't really true. Sedation changes the results which is a bummer. I will again save you the details as I know my mom reads my blog. I can't move my neck very well yet but it should wear off in a few more hours.

I was really glad to have a new book with me today. I am presently in two book clubs and try to make a third one every once in a while. I have a lot of time to read while I do my vests but I was out of reading material today. I was really thankful for a stack of books that my neighbor brought over. One of them was a story about adoption and a great distraction in the waiting room.

I get a lot of slack about always responding, "I'm okay." People are always asking how I am doing and if I am feeling better. I told my friend that I think one of the reasons people respond that way is that they might just believe it if they say it enough times. I can't ever really tell if I am "better" when it comes to IV drugs. The PFT scores tell the story usually and they don't always agree with me. I also don't want to sound terrible either and the details aren't pretty. If you get a vague or okay answer from me, it usually just means that little ears are listening or I just would rather not think about it at that moment. It is kind of like my husband's response when people ask him how fast his race car can go. He usually looks at me and simply says, "I'll tell you later." He won't answer the question in my presence.

Blessings,

Cindy

Invite me

I am waiting for dinner in the oven and listening to the "bride" cooking in her kitchen (previously know as our dining room). I was thinking today about how much I appreciate people who invite me anyway. I will save the #1 thing that makes me crazy for another day. The second thing that makes me crazy is people making decisions for me. It is why I don't handle a bunch of people sitting around figuring out what exactly to do with me so well. My doctor has a special skill of getting me to believe his latest plan is really all my idea.

In the past few days alone, I have gotten invitations for the zoo and the play area at the community center. I have been asked to a Pampered Chef party and to pick up food for the food shelf. Some of my friends are going scrapbooking. You might be thinking this is not all a good idea. That is just the point. I can decide what I can and can't do. I am very capable.

A few weeks ago, a group of people that I don't usually see very often was having dinner down the road from my house. They didn't call me and someone intentionally didn't tell me so my feelings wouldn't be hurt. It didn't work. I still eat and I still like to be invited. I might not always go but that is okay.

I don't always get to be the kind of friend I want to be or to go to everything. In the past few months, I have had to say no more often than I like. I still like to have a choice. I appreciate the invitation even if I have to take a raincheck.

Today I am thankful to my friend who waded through the snow to drop off some dinner. I am thankful for my husband who is blowing the snow and will get my car up the driveway. I am really grateful to the check out guy who could tell I was having a rough day and asked if I had done anything fun this week. (He is organizng a scrabble tournament at school.) I am thankful for all the people who adore my daughter and help keep her life normal even when Mommy is sick sometimes. I am grateful to the readers of this blog who try to understand even if the details are a little vague.

Blessings,

Cindy

Do A Project

I am sure the title seems a little odd but I have been thinking about prayers in action. One of the really easy ones is simply to do a project. You pick something, put in a few hours, and "check it off." My daughter has taken to saying, "check it off." Apparently, I say it a little too much. My husband is worried that her hair might turn red too.

Last week, my sister came to visit for a day and we had a little bit of time left after our regular Target visit and taking our girls to the "beauty shop." We sat in what we call the baby room and sorted through the baby clothes. The bins are starting to take over. There is a difference between being sentimental and being overrun by baby clothes. We sorted and piled some for my niece and some for an upcoming sale. In the end, it looked like we tried. I might not have felt physically better but my mind felt better and the space looked better too.

The rest of this week is a little unknown. I still have a few tests at the U tomorrow but I am trying to get one moved around so I won't be there all the day. The other nasty test got postponed until Friday. My blood is too thin right now so the cardiologist won't touch me. It is a standard test but I am not really too excited about the whole matter. I know they do them all the time but I don't do them all the time and I would like it to be over.

We might get brave today and venture out to the grocery store. Maybe just the gas station. I think it is a good day for crafts.

Blessings,

Cindy

Menu Plan Monday

If you have been following my blog, you have likely figured out one of the easiest ways to help me or anyone really is to bring food. (In my case, I don't eat onions or beans.) I have been trying to get my BMI to the magic number for a very long time. In order for me to maintain my weight, it takes about 2500-2800 calories. Lung disease uses a lot of calories. In order to gain weight, it takes even more calories. I had a personal trainer for a long time who was focused on muscle mass. We are on a break again until my picc line comes out. I tried the Snickers diet (my own invention) and my daughter has me eating a lot of ice cream. We don't eat a lot of dessert at my house but we eat a lot of ice cream.

Studies show that people with CF who weigh more tend to do better than those who weigh less which is why the journey continues. It only takes a few days of being sick to drop all that good work so we have to be extra diligent. Many of you have likely noticed that I don't eat large meals since my pancreas doesn't work right. I am on what I call the eat all the time plan. A lot of people make comments about how they wish they had that problem but really you don't want severe lung disease. I have found one of the best ways to gain weight is to plan my meals. I just discovered a new site, www.orgjunkie.com, where folks post links to their menus every Monday. Our menu is below for your amusement.

Monday-Pork chops and rice, peas
Tuesday-Steak and baked potatoes, freezer corn (thanks to my sister)
Wednesday-Food train delivery (thanks to one of my friends)
Thursday-Chicken and dumplings
Friday-Ham and sweet potatoes, green beans

I don't usually plan the weekends as we are usually more flexible or use up our leftovers. If you have a favorite recipe, please forward it to me. We are always looking for new recipes to add to our rotation.

Blessings,

Cindy

Doctor Day

I have never been as happy to be at the U as I was on this particular day. It was time to have the interesting test over so I could sleep again and swallow better. I was very excited. It ended so much better than it started. After that, my next stop was a six minute walk that measures your oxygen. I also had to get a blood gas where they try to draw blood from the very small vein in your wrist. They tried both wrists with no luck. By the time I had to blow, both wrists were wrapped in purple gauze to match my outfit. Of course, the PFTs didn't turn out too well after the events of two days and not getting much sleep. When my doctor saw me, he asked if I wanted to stay. Why would anyone in their sound mind want to stay? He brought in one of the nurses and arranged for an exam room in case I needed a nap. I must not have been looking spectacular. I felt a lot better after a vest treatment and then discovered that my next test was postponed to next week. The next stop was a gastric test where you eat eggs with something weird in them and they take pictures of your stomach for 1 1/2 hours. I told my husband that I thought I had all the weird tests covered but this was new even for me. The last stop of the day was a mammogram and I will just skip those details. I was hoping to end my IVs on Wednesday but it didn't work out that way. I have at least another two weeks and likely three weeks. Luckily, my husband was waiting in his Camaro to rescuce me at the end of the day. I am free again until Wenesday when I will finish up all this crazy business.

Blessings,

Cindy

Love my dog

Today was a long day at the U. I was really thankful for some wise advice to bring company. When I was home again and my family was off to dance class, it was my dog who settled in. He took one look at me and laid down with his chin on my leg. I know that not everyone loves my dog as much as I do. He can be naughty and he barks a lot. He has his faults. We all do really. He chooses to over look mine except for forgetting his favorite treats. (We are currently out of treats at our house which is a major offense.) My dog, Hank, is the one who gets up in the middle of the night and moves to the couch if I can't sleep. When I was younger, I had a stuffed dog named Arnold. Hank is the real version. He knows all the details and will greet the nurse and bark at the delivery man just in case. If you cry too much, Hank will lick the tears off your chin until you are not really sure why you are crying anyway. I don't really cry a lot by nature. I tend to get mad and cry. I like to think that I am pretty tough. I was not so tough today and I will be really glad when tomorrow rolls around. When I come home tomorrow, Hank will be waiting in the window when I pull into the driveway. I have made some modifications in my life for Hank but they are worth it. He is good to me even when he makes me a little crazy.

Today I am thankful for the woman who had to administer my latest interesting test. She has a gift to do that every day. I am thankful for my daughter who knows that ice cream makes everything better. I am thankful for my husband who spent his morning on the preschool field trip and took video of it for me. I am really thankful to my mom who is very brave and is taking care of my daughter tomorrow. I am also thankful for my friends who made dinner plans for next week, sent email, and sent texts to check on me today.

Blessings,

Cindy

Laundry

The weekend always comes to an end a little too fast at our house. My family spent Saturday at my cousin's wedding. We had a lot of fun but it takes a lot for me to be gone for the day. I travel with a portable nebulizer and a special nebulizer that I use every other month. We have a cooler to keep one medication cold and keep a supply of snacks. I did manage to do my IV in the church basement in between family pictures and the actual wedding. I have done IVs in a lot of interesting places! I think the best part of the day was getting to watch my dad dance with his granddaughters.

On Sunday, I was in recovery and didn't get a lot done unless you count my nap. I had to deliver some campaign materials for my church so my family decided to ride along. I was feeling a little dejected as we arrived at the last house. (No one else had answered the door.) The woman actually answered the door and was excited to talk to me. She had just read the devotional that I wrote for a collection put together at church. She confessed that she had not been to church for a while. God is at work.

My husband was kind enough to spend the better part of the day catching us up on laundry. I don't mind doing laundry but I can't carry the baskets upstairs very well right now. He also made dinner with our daughter. I was secretly watching them cook while I was doing my vest. She had her pigtails in her hair and was standing on a chair to assist him.

I am not looking forward to this week as I have a few tests at the U that I would rather skip. I do annual tests every year but these are a few extras to cover all my bases. I have another test next week for my heart. I called someone I knew who had the same tests. I didn't have her number so I had to call a friend to call another friend to get it for me. She had really good advice and gave me some of the details. I might have been better off without the details but it helps to know what to expect.

Blessings,

Cindy

Visit

Earlier this week, I had the good fortune to eat frozen pizza with a friend. Over the noise of our kids playing, we did our best to tackle the latest problems. I told my husband it was like going to therapy without the fees. Sometimes a good visit is really healing for the soul.

I got a call today about a friend waiting for surgery tomorrow. My daughter had the day off school so we decided to make a suprise visit. This particular friend is much older and wiser than me. She was told in the fall that I was fighting staph and started to cry. It was my turn to return the favor and provide a little distraction. I think one of the worst things about being in the hospital is just watching the time tick by so slowly.

My daughter and I were at the gas station when I realized that I didn't know exactly how to get to this particular hospital. I didn't bring the address and I still haven't learned to use the GPS that my husband bought for me. As we were waiting, a van pulled up with a logo about providing rides to local hospitals. I asked the driver if he happened to know and he didn't know right away. After I told him what I could remember, he told me the right exit and two turns that would get me there safe and sound. I think that is God at work. I know my friend appreciated the visit but I also think helping someone else even a little helps. I get a lot of help and I appreciate the opportunity to pass it on.

Blessings,

Cindy

Work

Today I went to a meeting for an upcoming event to raise money for the new Children's Hospital. It always reminds me of how far I have come and how different things are now. I was a patient at the old hospital more often than I would have liked. However, I know that was much less often than some of the friends I met along the way. My doctor told me a few years back about a new study that basically revealed that some CF patients just do better. He said it reminded him of me. There was a time when he would just have to say IVs and my PFTs (pulmonary function tests) would cooperate and go back up. I like to think it has something to do with being stubborn but it might just be a little bit of luck and a lot of prayers.

The question that always stumps me is whether or not I plan to go back to work when my daughter starts school. Sometimes I correct folks and sometimes I just let it go. I would like to say that I choose to stay home and raise my daughter. There is no doubt it was the best thing for her and the best option for my health. I could never have reached this level of compliance and maintained my work life. The reality is that in a 20 minute conversation with my doctor and his colleague, the decision was done. I went to school for 6 years and spent 10 years building a career that made me a little crazy but always assured me that my work really did matter. I do hope to do more volunteer work but it is much more likely that I will become a yoga queen. I do not see a future where my doctor would ever agree to me at work. I am okay with that now. It was a good run and I got a lot done in 10 years. I also got to meet some really interesting people.

One of the ways that people can put their prayers into action is simply to make a gift or get involved. The research towards a cure continues and the money really does add up. My work in philanthropy started in a bowling alley as a poster girl for CF. I have come a long way but we aren't done yet. You can make a gift at www.cff.org or support your local University. You can also attend an event or join a walk. One of my favorite walks was with my largest team ever at a CF Walk. My friend made everyone signs that said they were walking in support of Cindy. She made me a sign that said, "I am Cindy." It was pretty cool.

Blessings,

Cindy

Question of the day

Rumor has it that word of my blog is spreading. I have just given it out to folks that I have written about so far. I don't really mind if it is shared but I am not going public just yet as far as Facebook and things like that are concerned. I was hoping to make it look better and add some features but that might come in time. If you pass it on, be sure to have them read from the start or some of it won't make sense.

I had a really interesting conversation while I was trying to look tough for my nurse today. I should explain that I don't think most people have as much trouble changing a dressing. She told me that folks with CF have extra sensitive skin so I am not as unusual as I like to believe. I also declined the stitches that usually go along with a picc line so we have to be extra careful about the whole thing not falling out. It is kind of like a lot of pieces of spaghetti hooked together that go in your arm and up through your vein around your armpit to your heart. My last picc line had a huge rash and was really nasty. So, things look a lot better this time around. However, I still don't like to have anything like clothes touch it so I look like my arm is in a sling all the time. I am going to a wedding this weekend and I am not too excited to have to break out of my yoga pants for some real clothes. The wedding will be fun but it will require a little planning on my part to be dressed up and do my afternoon IV in a strange place.

Right, you are wondering about my interesting conversation. Well, I was saying how I was going to miss Cooking Club next week. My Mom's Club has a variety of fun activities all month long that could keep you very busy. My nurse pointed out that you shouldn't miss things that you want to do. I agree with her but what I want to do and what I need to do are not always in agreement. I can't really get my dressing changed and discuss the greatest new recipes all at the same time. It is a bit of a challenge because I would always prefer to be invited even if I can't go to something. My schedule tends to get in the way. Depending on the month, I do between 9 and 12 nebulizer treatments along with my three vest treatments and the fourth by my husband. (I rotate inhaled antibiotics which is why the number changes each month.) My husband is really good about helping to wash all the nebulizers which is for sure a prayer in action. It is one less thing for me to do and sometimes the little things really add up. I guess the point is that you have to squeeze in the fun parts of life in between the rest.

If I were a little healthier now, I would book a ticket to Disney followed by a trip to Hawaii. I would also buy the darling blue Mustang for sale that matches my blue couch. A Mustang in Minnesota isn't really practical so that isn't as much about being healthy as it is about not ending up in the ditch. I would also have to cut a lot of coupons! I also plan to take a road trip to meet my college roommate's new baby except he isn't so new anymore since he just had a birthday.

I told one of my followers that I was going to post a question of the day to see if anyone really is reading this. She claims that it is true but she is related to me so she has to say that. So, where do you simplify your life to make more time for the good stuff?

On a side note, my darling daughter really wanted to buy donuts today. I convinced her that we could just have a cookie. A few hours later the doorbell rang. It was her friend from preschool along with her mom to drop off dinner and donuts for Lillie. I guess God is telling us to eat the donuts.

Blessings,

Cindy

A little encouragement

I am always amazed at how things tend to work themselves out. I believe God has a plan but I would love to know the details of the plan. I am a planner by nature and keep myself busy making lists and notes for my family. Of course, many of my well laid plans are set aside when reality sets in. I like to think that I am an optimist but I am really more of a realist. I have found that if you don't set your sights quite so high, the results aren't quite as disappointing at least as far as CF is concerned.

At gymnastics today, I learned that one of the other moms in my class used to teach tennis. She just happens to belong to the same gym and is looking for an accountability partner. I should point out that I have been sitting with her for months and just figured this all out today. God is at work.

When I got home, there was a message that one of our standing weekly appointments on Tuesday needed to be moved to another day. It made me wonder if the speech teacher had read my posts about Tuesdays. Again, God is at work.

Yesterday, my mom babysat while my husband and I went to a dinner at church. I hadn't realized it was a dinner for certain volunteers and not the whole congregation. It was such a blessing to have two hours together and a real conversation on our way home. It is amazing how it doesn't take very long to connect but it is hard to do sometimes with everything else going on.

Blessings,

Cindy

Doctor Day

At the end of the day, the valet man said, "Hi, Ms. Ellis. How are you today?" I think this was likely God telling me to look up a little bit. I couldn't help but think, "You really have problems when the valet man at the University knows your name." It isn't like it is just one guy. They have a whole crew and a lot of people using valet. He might just remember my messy car or my cute kid. It could be my red hair or my look of desperation to be sent home again.

I arrived early for a meeting at 10 only to learn that the other person was in another state. I took myself to breakfast and ran into my original doctor from 35 years ago. I know it isn't good to be sick but getting old isn't fun either. His wife was along and walking back to his office. We didn't always see eye to eye but he is not a man who is willing to back down. He is a man of compliance and I never really learned that until I was forced into it later in life. As a kid, my mom or someone else would hit me in a variety of positions to loosen the gunk in my lungs. My original doctor and his team created the vest which is what allowed me to move away to college and later graduate school. I strap the vest on three times a day now without fail. While I would gladly give it up, it is really a cool invention. I try to have my husband hit me the old fashioned way for the fourth treatment. I get a lot of comments about the massage table in my living room. While my husband hits me, my dog and daughter usually lay next to me. She likes to take turns with her dad which isn't really ideal.

The good news of the day was that my PFTs are up and the drug of choice seems to be working. I also get to go off of Prednisone in another five days. I have been decreasing my dose as you have to go off gradually. Prednisone has some nasty side effects and in the long term, it causes problems for your bones. In the short term, it reduces inflammation which is good. It also makes you more hungry and if you are trying to raise your BMI, that is also good.

After a visit with my doctor, I was off to meet the sinus doctor. I had a CT scan a few weeks ago and the sinus doctor was supposed to tell me how great they look and how I should never come back to see her. Of course, it didn't work out quite that way. One of the sinuses under my eyes is completly blocked. If it were causing me more problems, it would likely result in sinus surgery. My friend had it done and gave me just enough details to know that I really would like to avoid it. So, we are going to try some old fashioned tricks like the neti pot and a face mask during my nebulizer with hypertonic saline (aka salt water). She also thought drinking more water might help. We will take another scan in two months.

I was feeling pretty pleased about my PFTs and escaping the sinus doctor's office except for the exercise meeting. I did pulmonary rehabitlitation last year and the hope was that I could just continue at home. Before my daughter's arrival, I worked out with a trainer twice a week and continued once a week after my daughter came home. I have to take a break with a picc line in my arm which resulted in a three month break in the fall. So, now it is time to figure it out again. According to the expert, you have to work out 4-6 times per week to see improvement and a minimum of 3 times per week to maintain. This is a little tricky when you are trying to gain weight and short of breath. However, it isn't optional. For Christmas, my doctor sent me an oxygen tank for my basement and a machine to use while I do my vest. It wasn't really a present. It just arrived in December so I have no excuses. I might need to find some exercise partners and make it social.

The last major news is that I am considering getting a port. When I talked about it last, my doctor said they usually wait until someone needs three picc lines in a year. Of course, most people just have a nurse put in their line. I get sedation and have crabby veins which are made more complicated by my blood clot problem. I thought I could just do it the next time that I needed a picc line. I learned that you are supposed to do it when you are coming off IVs or on the upside of a "tune up" rather than the downside of things.

Prayers in action was at play again today when my husband called. He was spending the day with our darling daughter. They had been out to lunch and at the pool practicing her rainbow arms. They couldn't go home because my new cleaning lady was still at our house. I sent them to the grocery store. I smiled when my husband told me, "I don't have any coupons." I think I have finally converted him to my coupon ways. He picked up something for dinner and a few of our regular items. It was enough to let me postpone a trip to the grocery store for a few more days.

I am very thankful today for my new cleaning lady and my husband who has agreed to this new budget item. I am also thankful for my darling daughter who convinced my husband that we should all see Disney on Ice. After all, the princesses will be there. I am grateful for my mom who spent last night with my grandpa who has pneumonia. He could use some more prayers in action. I am really thankful to live in Minnesota and know that I am getting the best possible medical care.

Good news

The day started with a visit from my friend who not only taped my bag on my arm but also brought dinner...a lot of dinner. It was great to start the day with clean hair and my daughter was off to a pj party at school. I was off to the clinic to check my INR. The goal for me is to get a blood reading between 2 and 3. I came in at 1.8 on Tuesday which meant that I had to keep giving myself shots in the belly twice a day to prevent blood clots. So, I went for a new reading in hopes that I would be liberated of shots other than insulin. After three sticks, they gave up and said my veins were too small. This was obviously not my normal clinic. I was sent home again to call the office and figure out what dose of oral meds to take until my blood would cooperate.

The medication monitoring office arranged for me to go back later in the day to a different clinic closer to my house and try again. They had a different system so they could just poke my finger and not have to get a vein to cooperate. I am delighted to report that it worked and now my number is 3.4 which is too high but requires no shots. When it is too low, you have to avoid green foods. I am also free again to eat lettuce and broccoli.

My daughter had a fun play date today and is sleeping on the couch. It would be great except she hasn't had her dinner yet. We are heading back to the U tomorrow to see if the IVs are working and if my lung function is up at all. The stakes are a little high as I don't have a lot of antibiotic options. I was on one in the fall which tends to cause hearing loss and we don't have a lot of choices. I also don't have a lot of lung function to lose. So, as I tend to tell those in the know, "Think big numbers!"

Blessings,

Cindy

Hair

I am sure you are wondering why this entry is titled hair. On Monday, my friend called to see if we needed a ride anywhere. She thought she could call it, "Driving Miss Cindy." We had made it to gymnastics safe and sound already. I told her if she was really bored that I could really use someone to wash my hair. I know it sounds a little silly but I can't tape the bag securely on my arm for a shower and I can't really get it clean with one hand in the sink. I don't know why you feel better when you hair is clean. I usually wait for my husband to tape my garbage bag for me after work. On this particular day, I had a meeting at church and it was such a gift to go and feel a little more presentable.

I didn't get to blog yesterday because Tuesdays are typically the longest day for me. The help of the weekend has gone back to work and the nurse comes to visit. I only have to look at her to feel more tired. She informed that I have nausea sensors in my brain that are causing my head to feel heavy. Her visits are really not that stressful. She and her fellow nurse who covers for her are both very generous and kind. I just prefer to not touch my arm and my arm prefers to not be touched. I always think that I will get a little tougher or it won't phase my next week but it always does.

This brings us to the topic of why I do the things that I do. I get a lot of questions about why I volunteer at church or take my daughter to her activities when I don't feel good. The truth is that if you sat around all the time thinking about how you don't feel good, you would quickly go crazy. I am also an outgoing person so the idea of sitting around with myself all day isn't really that appealing. I do love to hang out with my daughter and my dog despite the barking but you can only spend so much time on the couch reading books and playing games.

After I picked my daughter up at school yesterday, a pan of tator tot hotdish was waiting on my step. I love that people are willing to cook for me because it takes me so much time and energy to do it right now. Today, my friend called to see if I preferred tomorrow's dinner already baked or just ready for the oven. God is at work. We are going to eat dinner at church tonight which is always fun and reminds me that my community of fellow believers is bigger than I tend to think.

Blessings,

Cindy