Doctor Day

As I write today, I am running the last IV of this round. It marks the end of 9 1/2 weeks. I went to do PFTs yesterday and the graph looks so much better that they printed a copy to hang on my fridge. Of course, now the challenge is to keep the graph looking good. One thing about lung function is that it does not always cooperate. It likes to turn on a dime and it is not static. So, we are going to hold our breath around here until next week when the big test comes and we will do PFTs again. If the numbers still look better, we will make a decision about whether or not to pull my picc line.

What does all of this mean? Well, it means that the swimming pool might just be in my future. It also means that I will have a lot of dates at the yoga studio. My hope is to get rehab started on my own. The other challenge is to manage expectations. I will not be agreeing to everything fun under the sun as the three vests/day will continue and the inhaled antibiotics will start again. I like to think staying healthy is within my control but it doesn't really work that way. I can do everything that I am told but a lot of luck and divine intervention are also needed.

Earlier this week, a relative thought that I must not be that bad if I wasn't in the hospital. I think that is a common misconception. Of course, the big house is never good. However, my doctor will do what he can to avoid the big house due to the other germs and my own sanity. It is one of the reasons that prayers in action are so important. When I can say that I have plenty of help, it gives me a little bit more wiggle room to treat myself at home.

I am especially thankful to my friend who watched my daughter yesterday and sent her home with a yummy pan of lemon bars. I am also grateful for my husband who was pretending to be a prince last night and riding his horse to kiss our Sleeping Beauty. It was really very amusing. I am hoping the sun shines today for the kind men at the valet station who were very concerned about my car being a little stubborn yesterday. I am looking forward to a fun Friday.

Blessings,

Cindy

Be a donor

I had the good fortune to track down my friend in Indy this week. She had a lung transplant and celebrated her first year with her new lungs in January. I have had a lot of questions lately about why I don't do the same thing. The thing is that I am rather attached to my lungs. I like them even when they struggle. The hope is for any lung transplant recipient to keep their own lungs as long as possible but not wait too long so they are well enough to endure the surgery and the recovery. Of course, no one knows the exact timing and when lungs will be available.

I got to see some of the pictures of my friend as she went through her recovery. They brought tears to my eyes. I still haven't seen her in person. She has ditched her oxygen tank and is enjoying lung function that she can't remember even as a kid. There is no doubt after talking to her that it is not as easy as people would like to believe. Sometimes you just have to take a really big leap. God got her this far and it is no small miracle.

If you have not already done so, a great way to put your prayers into action is to be a donor. Of course, you shouldn't be in any hurry about it right now. Go ahead and make your intentions known. Have the conversation with your family that everyone avoids. When the time comes, your gift will make a difference to people you have never met but it will be a difference that they will never forget.

Blessings,

Cindy

Help entertain

I am amazed at how your attitude improves when you can open the screen door! We spent a glorious Easter being very relaxed. At the last minute, we organized a potluck (or pitch in) with some of my daughter's friends and their families who were staying in town. Our friends were kind enough to let our dog take a nap at their house so he didn't have to participate. As it turns out, we ended up with an adult and a preschooler at about every other spot around the table. One of my husband's relatives sent us money for dinner that we used to buy an enormous ham. We can afford our own ham but it was such a fun gift to receive.

I really like to have parties but the dog and the IV schedule slow me down a little. I have more china than any girl really needs and am limited only by my husband's refusal to buy more cupboards. I think it is a little sad that we all don't entertain a little more often. Although, I had to wonder a little if we lost our minds as my husband and I were making devil eggs to look like chicks hatching at midnight and waiting for my last IV to be done.

Over the next two weeks, we will get to see almost all of our extended family between celebrating birthdays and watching the "big show" (aka dance recital). I hope to enjoy watching the cousins play together and the four generations interact.

I am especially thankful today that my youngest niece has recently taken to talking on the phone. It was such a delightful way to start the day. I am also thankful for my friend who came to visit from Iowa and a little time by the side of the pool to hang out. I am thankful for my friends who are just as crazy as me and thought the preschool version of Easter was fun. I am also thankful to have had the opportunity to meet some other adoptive families over the past few weeks who live in our area. I got to spend part of Easter hanging out with my daughter doing sidewalk chalk and listening to her talk to our smallest neighbor who was born in India. God has a lot of plans at work!

Blessings,

Cindy

Get a haircut

I am delighted to report today that I got my really bad haircut cut again. I have never had to repeat a haircut so it was a new experience. I told my stylist that I have learned my lesson and I will be going to the same person from now on. On some other good notes, the dentist sent me home with no cavities and my blood is cooperating this week. Overall, things are looking up. We are working week two of the new IVs and I am hopeful this round will have a better outcome.

On the menu this week, we have:

Tacos
Perogies (an emergency staple)
Hamburger stroganoff
Chinese takeout
Spaghetti casserole

We are also hoping to do a little baking and have a date to color Easter eggs!

Blessings,

Cindy

Take care of yourself

One of the areas that I struggle is helping friends and family who simply don't take care of themselves. Everyone needs help and that is not what I mean. I mean things like choosing not to take medicine or go to the doctor at all. I know that the doctor doesn't always have good news but choosing to just pretend you didn't hear it doesn't help either. One of the things that really makes me crazy is folks messing with the dose of their medicine. I have one relative who considers one of her medicines to be "rat posion." She might have a point but it is keeping her alive so it is hard to respond. I find that I am forced to spend so much time taking care of myself that I just don't have the right words sometimes. I have a friend who decided he was not going to take some meds that he really needs to take according to his doctor. I don't really know him well enough to tell him that but it really makes me worry.

A great way to help other people is to help yourself first. I used to feel bad about time spent away from my family but I know it is in their best interest. My daughter will gladly watch a cartoon while I do my "work." My husband is happy to get me home in time for whatever is next on my list. If you are wondering how to make a difference, here are a few easy suggestions:

Schedule a visit to your doctor
Take the test that you have been trying to avoid
Listen to your doctor
Take your vitamin
Make healthy food choices
Get some exercise

I can not begin to help my friends and family as much as I like. I like to cook. I like to travel. I like to visit and play cards. I like to dance. I just don't have as much time to go around as I would like but I am taking care of the most important things. Sometimes it isn't a lot of fun. It really is important for all of us.

Blessings,

Cindy

Doctor Day

When I checked in for doctor day, the lady at the front desk said, "Weren't you just here?" I call it a promotion when you get to stay away longer. Of course, it had only been a week so she was right. The good news is that my PFT scores are heading in the right direction versus the deep south. It also put the threat of the big house to rest. The scores have a way to go but something is helping. It was also good to get input from another doctor. The not so exciting news is that I am going to try a new medicine to help my stomach move food faster. The drug has some weird side effects so I am really hoping they don't appear. The thought is that it will help both my weight gain and that it might impact my lung function.

We did manage to put the issue of the port to rest for a little bit. I learned that it won't likely go in my left arm due to my blood clot hanging on from the fall. We will wait until I am done with my picc line and it will have to come out. The port works in a similar way but the end cap is sewn inside of your arm. It is threaded up your arm and into your vein in a similar fashion as the picc line but it has less risk of infection and can work much longer.

The other news of the day is that this doctor thinks I should do pulmonary rehab again. I did it last summer but he suspects things have changed enough that we should do it again when I am feeling better. It is held up half way between my house and the U so the drive isn't so bad. I do have to arrange for someone to hang out with my darling daughter but we have more flexibility in the summer.

One of the things about Doctor Day as it usually results in more to do rather than less. The latest thing to increase is checking my blood sugars more often. There is some concern whether the long acting insulin is really enough or if I need shots during the day again too. I used to count carbs and do shots when I ate but now I just do one shot in the morning. It is much easier for me but we will see what the numbers say. Both infection and Prednisone make your blood sugars go up even more than normal.

The highlights of Doctor Day included my friend who met me for lunch and some last minute calories before the weigh in. She took my daughter home because it is "boring" to go to the doctor. When I got home again, my house was clean and another friend arrived with dinner. I have been dreaming about chicken and she brought chicken from the very same place. She also brought lettuce salad, fruit salad, corn bread, and ice cream balls. She could really do this for a living. I have never in my life eaten so much corn bread. We are rationing the ice cream balls in hopes they last longer.

Blessings,

Cindy

Listen

Yesterday, I had the chance to catch up with one of my friends. We are usually heading opposite directions on the same road. I had an exchange with someone else that just hit me wrong. I am also highly medicated so I thought maybe my reaction was a little strong. Then, I told my friend and her reaction reminded me of how God puts the right people in your path. Sometimes you will find some extras but the right ones are there if you figure it out. My friend had the same reaction and a little stronger than mine. It just made me feel better. It doens't mean that I will do anything about it but it made me feel a lot better actually.

I had tried to say no to something on my not to do list and my interaction was related to someone just not getting it on a level that I don't have the energy to explain. I try to do too much. I am aware of that. I added up the lines on my latest excel spreadsheet and came up with 22 as of late. When I say I can't do something, you can presume that I have tried to say yes. I have reviewed the calendar and tried to rearrange. I have tried to rationalize yes in my head and work out how maybe I could just do that. When I say no, it is usually with the help of my wise husband or my doctor who help to say no on my behalf. It is not my gift. When I explain that I am immune suppressed and I have to say no, it means no. It doesn't mean I wouldn't like to do that or I don't understand how we need volunteers. It just means that it can't be me.

I spent part of my morning getting to know my treadmill. We had parted ways so to speak. I think she needs a name. (Some of you have met Bertha, my mixer. I made a lot more cookies after I named my mixer.) I have found that I can do an IV, wear some oxygen, talk on the phone, and walk on the treadmill all at the same time. Of course, it is all well and good until my dog decides to jump on but he looks pretty hesitant.

I am especially thankful today for all the people in my life who listen. I appreciate the folks who call and ask me if I need help rather than asking other people. Other people aren't acutally here most of the time unless you talk to my darling daughter and she is not at all afraid to tell you what she thinks. On the way home from school today, she said, "Mom, I like you to wear high heel shoes. You look prettier."

Blessings,

Cindy

Bake

I have this lofty dream of having weeks worth of menu plans with the coordinating grocery list. The idea is that you could just post it on the fridge and tell your family that this is week four so they know what to expect for dinner. You could also hand the coordinating grocery store to your spouse or some other generous soul heading for the grocery store. Well, my menu is slow this week because we have a first draft of the plan. I don't have the list to go with it but we are going to give it a try before we invest more time. We also have four spaces for an alternate choice so we can mix it up and try new recipes too. Some of you know that I am a little bit of a recipe addict. I like to think if you get enough of them, they will cook themselves. I also have a cookbook collection that grows despite my efforts to contain it. The plan for this week is below.

Monday-My favorite local place with popcorn while you wait for dinner
Tuesday-Meatloaf
Wednesday-Leftovers or pizza (usually a Friday meal)
Thursday-Lasagna
Friday-The food train (thanks to my very determined friend cooking on Doctor Day)

The highlight of yesterday was preschool conferences. My friend was kind enough to come early to watch my daughter as it is supposed to be only a parent. They talk about funny stuff like cutting a straight and curvy line. I asked about summer and was advised to do more crafts. I didn't know it was possible to do more crafts. When we arrived, my friend was waiting with banana bread in hand. The funny part is that it wasn't just one loaf. She had made four loaves so we would have some extras for the freezer. Baking is a great thing to do when you are working on calories and one of the first things to drop from the to do list when you aren't feeling so great.

I also had the opportunity to talk to someone who lives close to me with CF. We have the same nurse and she gave her permission to give me her number. She is 48 years old. (I remember thinking 20 was really old to have CF.) It is interesting to me how we have never met but know all the same people and have so many similar issues. It reminds me how I miss my friends with CF in IN. I didn't really know people my own age with CF until I moved to Indianapolis for graduate school. I haven't heard from one of them lately and that always makes me nervous.

Blessings,

Cindy

Buy flowers

Our schedule around here this week is very odd. We are getting used to the new IV schedule to start at 7:30 each day and end at 12:30 at night. My husband overheard me on the phone giving my typical answer about how things are going. He claims that I "sugarcoat" it. He told me to just answer, "actually, it really ..." I do pretty good during the day but the last IV is a bummer. I put my daughter to bed and have a nap until it is time to start again. I hope it is working but it is hard to tell. I think the Prednisone is doing something since it doesn't feel like a constant bear hug anymore.

I was very fortunate to have a little extra help yesterday. My mom picked my daughter up from school and picked up some groceries. She also helped my daughter pick out some flowers which she already thinks will fix everything. (I have trained her a little young.) They had fun on their errands and at the beauty shop while I was visiting the female doctor. I will again spare you the details. I am very thankful to have found that one of my pediatricians (from years ago) is married to a gynecologist. She understands CF and all the various issues much better without me having to explain everything. She also is connected to the rest of my team so she can read all their notes and test results.

One of the challenges that I have is to take a wealth of medical knowledge and put it to daily use. I get a lot of really great input but the experts are not usually all in one room. So, my doctor or his colleague might have one opinion. The diabetes doctor has some more input as does the dietician and the gynecologist. Now, we have a sinus doctor in the mix and the pancreas doctor is on the back burner for now. You also have my nurse and the medical monitoring office checking my blood every few days. Well, you get the idea. It is up to me to put it all together and figure it out every day.

I haven't forgotten about the menu plan for the week. I have just put it off until later today so check back later. I will tell you about this week's frugal findings that will be sent to my mortgage company as an extra payment. This week is better than most:

$328.49 (the consignment sale for my darling daughter)
$ 60.00 (a health insurance wellness award for talking to their coach)
$ 15.00 (payment for various bodily fluids given to research in my most recent study)
$403.49 TOTAL

Blessings,

Cindy

Support my husband

I think it is fair to say that most of the men in my life have a hard time. Some of them prefer to pretend CF doesn't really exist. It is a coping mechanism really. Others would rather talk about anything else. At least one will cry reading this as his heart is too soft for his own good. One won't read this at all because his heart is too soft for his own good too. I think it is hard on all of them as they are fixers. They are the ones who have moved me multiple times back and forth across the country in one direction or the other. They are the ones who would do anything to be able to make CF just go away. They carry my cooler with IVs when I need it and set up my vest up when I come to visit. They prefer to take me out to dinner so I don't have to cook for them. Some of them pretend they don't notice my wheeze or leave the room when I put my vest on. Others make up funny excuses to call me.

At the top of the list is my dear husband. He doesn't have the option to ignore CF. It is hard to spend much time around here and be able to ignore it. He spends lots of time working and loves to hang out with our darling daughter. He would wait another three years for her if needed. A great way to put your prayers into action is to support my husband. Most people know him for driving fast cars. He likes to talk about racing but he really has a lot to say if you ask. My sister and a few others have caught on and will talk to him instead of me when they call. He won't tell you anything on his own accord but he will if you ask. I overheard him on the phone and he started to answer a question about me honestly but then the subject changed. He just let it go. He is a man of few words but they are honest, funny, and very smart words. If in doubt, ask him about his daughter.

When I was dating my husband, I got a phone call from my grandparents who were the first family members to meet him and had just got home from their visit. Apparently, they had discussed the matter on the way home and my grandma called to tell me about it. They had plans for us that we hadn't quite covered in two months of dating. The message was clear. He was an answer to prayers and I better not mess it up. She didn't use those words exactly but that was the message. We saw them last week and my grandma still turns her head and grins at him.

Blessings,

Cindy

Doctor Day

The good news is that I am home enjoying a Diet Coke. The bad news is that the PFT scores were ugly today. I am lucky to be at home. I have had a severe headache the past two nights which I attributed to changing types of inhaled antibiotics. I still don't really know if that was the cause but that should have been a sign to me. We will stop the inhaled antibiotics for now so the number of nebulizers will go down temporarily.

The IVs will also change which means the count starts over. Seven weeks of one drug does not count towards the count of two new drugs. One of them is every eight hours and the other is every twenty four hours. They come already mixed which is nice for me and a little more portable than my mixing station at my dining room table. One of them also comes with potential kidney problems so there will be more blood draws. The nurse will come before the drug and after the drug is administered once a week to ensure the health of my kidneys. The results tell the doctors whether or not to change the dose.

My weight also went down a little which can be accounted to my cooking and being a little more tired. I am going to do another round of Predisone which will likely help both my weight and the inflammation of my lungs. I am supposed to go do PFTs again in two weeks but the appointment was accidently made for next week. We decided to keep that appointment to make sure things are moving in the right direction next week and then go back again too.

A few months ago, I tried to make a list of the people actively "working" on my situation. I gave up when I hit 10 and I have now far surpassed that number. At one point today, five people were standing around us talking to my darling daughter. She was passing out Skittles to them. I am very thankful to my husband who met us to take her to lunch during my doctor visit. I am also very thankful to the kind valet man who found my cell phone.

Blessings,

Cindy

Send mail

One of the easiest ways to help anyone who isn't feeling well is to simply send mail. I was reminded of this when I got a fun note and some new pictures in my mail today. I used to send A LOT of mail. I actually exchanged coupons for stamps at one point to be able to send more mail. I have a pile of mail waiting for attention but my daughter has caught on to this tradition. She likes to make a lot of mail. She sent something to one of her grandparents last week and the envelope had so much "art" on it that I am still not sure if it will make it. I was actually a little shocked that the mail man accepted it. I have also had the unfortunate experience of sending mail to someone that arrived too late. It is not good to have a get well card still looking at you for a person who simply did not get better and you never got it in the mail.

My husband supports our mail habit around here. We spend a lot more time at school now so our outgoing mail isn't as strong as it used to be. We address it and pile it up and my husband makes sure that it finds its way to the mailbox. One of his big concerns about me being sick is that he would forget to mail something. If we find ourselves in that situation, feel free to remind him to pay the health insurance bill. The rest will wait for mail day.

Tomorrow is doctor day again so it is time to think big numbers. I spent a lot of time yesterday doing an analysis of PFT scores. It is not a very exciting subject. I calculated averages and reviewed calendars to try to figure out if we were doing something different at one point or another. The higher scores appear when I was actually doing much less. A lot of people think that if I just did this, that, or the other thing, CF would cooperate. The thing is that CF is a disease and you can jump through all the hoops and it will still remind you at the most incovenient times that it is in charge much more than you care to admit. So, we continue to mix IVs, review culture results, "beat" me up, and do a lot of nebulizers and vests. (We just switched over to the 12 nebs a day month so you will find me saying no a little more often due to the schedule.) The goal is to say we did all we could do and not wonder if we could have done anything else. I have taken to saying "work the plan."

Blessings,

Cindy

The Power of Excel

I am very thankful today for my smart friend who helped figure out my format problems. As a recovering English teacher, it was very painful to me. You can't really take a red pen to your own blog but the thought was tempting.

I was delighted to learn last night that one of our standing Wed. activities was cancelled for today. It leaves us with swimming lessons and a promising list of great things to get done today. We have already picked up lunch, picked up some meds, and dropped off some things at Goodwill. I am always bothered by the fact that you can't really see the difference at the end of the day. Well, I can see it but no one else can tell.

On the list today is to resurface the Excel spreadsheet. When things got a little crazy last fall, I created an excel spreadsheet where I could literally check things off that related to CF and my own care. It also makes it really easy to see if some balls are dropping or if there are areas that need more attention. Seven days of items takes a complete piece of paper so it is a little daunting but it does work. I have done pretty well recently but the more you add, the more I need help keeping track of things. I ran into a woman from church at the library and she asked if I was a nurse that I could administer my own IVs. I thought it was a funny question.

I am thankful for all of the upcoming birthday parties and how folks worked to arrange them in hopes that my family could attend. I am also thankful to my friend hosting an Easter Egg Hunt this weekend. My daughter has been asking for about the Easter bunny for weeks. I am thankful for the friend who likes to invite me to her holiday parties (even thought I don't usually get to go) and is always willing to bail me out in a pinch. I am really grateful to the woman at church who said that I looked really good last night. (I don't think that is the case but I am glad someone does.) I am also thankful for the man at church who asked how I was really doing and the woman who borrowed me her book since I missed book club this month.

Did I mention that I have really smart friends?

Blessings,

Cindy

Call

I have been laying low for a few days. I did a little too much over the weekend which left me taking a nap on Monday and falling asleep during the basketball game. Most of what I spend time doing is okay on its own. It is when you put it all together that things just add up. I did catch up a little today and got a few things done including my trip to the grocery store and a hair cut.

I went for PFTs last week and they were up a little but not enough. I am going to try again this Friday. Today my blood is too thin so we will try to figure that out too. It is never a good sign when someone at the University is calling your cell phone.

One of my friends had a rough day today. She had to take her son for a scary test. A few weeks ago, another friend told me that I had plenty to worry about without worrying about her problems. The thing is that I worry anyway. I am actually quite good at it. One of the recent verses at church was "do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" (Matthew 6:34). I have taped it to my fridge as I need a gentle reminder. I am happy to help remind others too. Another friend tracked me down on my way home today to share some good news. It took her a few days to catch up with me. I am glad to hear the good and the bad.

I am going to change the way I post our weekly menu and just post five meals. I find that I often forget to take something out of the freezer which means that the days of each meal move around. On the menu this week, we have:

Poached cod
Chicken and rice with ranch dressing (you use the dry powder)
Stuffed shells
Chicken and dumplings (really this week)
Hotdish with hamburger

I am looking for some ideas for lunch. If you have some input, feel free to send me an email. Also, I have been having some format problems. I format my post but it doesn't appear that way when I post it. If anyone has any insight on that particular problem, I would love to hear it. I thought it was my computer but I had the same trouble at the library so please excuse my lack of paragraphs.

Blessings,

Cindy