Doctor Day

Well, we made it through Kindergarten round up with no tears. I am really quite proud of this fact. Now, we are on to our next adventure of the week to celebrate Chinese New Year tomorrow. My daughter has her first speaking role on stage so it should be very interesting.

My mom asked me earlier this week if I had been to the doctor this week. I confirmed that I had not and had not last week either. I didn't offer up that I was going there today as it only adds to my anxiety about the whole situation. People are really good about asking me to call them after the doctor but the truth is that I just want to go home and strap my vest back on. When it is a bad day, the last thing I want to do is repeat all the details. The call to my husband is enough for me. On the rare day that we have good news, I like to just relish in it for a little while.

My friend who has taken over watching my daughter since my other two friends moved is living the good life in FL today. She realized that she would be out of town and arranged for our other friend to cover for her. Before I knew about it, they had all the details worked out and I had a day at the U on my own which is a little easier for me. I have been having some sinus problems this week so we took the day off from school on Wednesday and laid low. My nurse told me yesterday not to get my hopes up which didn't seem like a really good sign.

Well, the good news of the day is that the graph is back at the numbers when I got out of the big house but still has to keep going up. So, we have two more weeks of IVs. We are going to decrease the Tobi a little since my blood tests are coming back a little high and my kidneys are getting a little tired of it. My last culture showed three kinds of pseudomonas and two of them should be handled by the combo of IVs that I am using now. The third one is resistant so we just have to will it away.

The bad news of the day is that I lost three pounds in the past two weeks for no apparent reason. So, we are back to the food diary and the eat all the time plan. I am also going to learn to use my bullet and add morning shakes to the routine. I think that is the only way possible to get in the number of calories that I need to get my weight to cooperate. I also met with my dietician today who found that both my vitamin A and D levels are low despite high doses of vitamins. So, we are going to add some more vitamins and reinstate my inhaler that was put on hold at the big house. My potassium level is still on the low side but getting better so we will continue with the ugly potassium pills.

By the end of my visit, I was ready to go home. I had to get some blood drawn for my research study. (I really think they keep it in a vault in the basement or something.) I went by the cafeteria to grab some lunch and ran into an old colleauge. I have been around the U for most of my 36 years so it isn't uncommon to run into someone that I know. I just prefer not to run into them with my IV connected and carrying around various medical deliveries.

So, today, I am thankful for the very busy valet that brought me my car so I didn't have to go out in the sleet. I am also thankful to my sister who helped me find the way to my daughter's play date when I made a wrong turn and was very lost. I am especially grateful to my fabulous friends who are so helpful and make a long day go a lot smoother for me. Please feel free to send your favorite recipes as we have a fun new project underway...more to come.

Blessings,

Cindy

Care Packages

One of my favorite parts about college was getting care packages in the mail. Of course, I really made it clear to everyone that I liked to get mail. I have gotten a lot of fun things in the mail, for example, a homemade cake, a foot stool, carmel popcorn, and the list goes on. Well, at the end of last week, a package arrived from Kohl's. I am not much of an online shopper so I was curious about it. My friend had a bunch of coloring books and a stamp set sent to us. It was a really fun idea and my daughter thought it was great!

So, the next day, my husband comes in with another package. He wanted to know what I had ordered this time. (Disclaimer: I am partial to ordering books online.) Again, I claimed innocence. My same friend had another package sent with this really great poncho sweater with an attached scarf. Can I just say that it is darling? I wore it on both my mystery date and my advenure with friends to see a Chinese dance show. I like to plan mystery dates which usually include tickets to some cultural event that my husband would never agree to on his own accord. This time, it worked out really well for us except our daughter fell asleep during the second half of the concert. I am still hearing about our mystery date to the ballet years ago. I have to admit he was right on that one.

It doesn't take a lot to send a care package. It can be anything really. I have two packages sitting on my desk waiting for a trip to the post office. I just think it is fun to send mail and fun to get mail. I can't recall if I mentioned my friend's package of gingerbread cookies. They came from Seattle with a note that simply read, "Some calories for you!"

Tomorrow, we are heading to kindergarten round up so you might avoid calling me. I didn't handle preschool so well and I imagine this will be worse. Feel free to pray for us.

Blessings,

Cindy

Motherhood

After eating the delicious meatballs that my aunt brought for dinner, I was getting ready for the last IV of the day when I realized that I didn't buy mozzarella cheese. This might not seem like a big deal unless it is 10 o'clock on the coldest day of the year and the cheese is for your daughter's slumber party at school. I only share this story with my readers for your own amusement and it should be no reflection on my actual abilities.

So, this morning, things got off to a rough start. I had managed to wake up at 6 without my husband's help since he was waking up in Indiana today. I hooked up my IV and went back to bed. When I got up again to shut it off, I realized that I never opened the clamp on my picc line so nothing had happened. This is not only really annoying but they are on a strict schedule which was now way off. It also meant that I had to open the clamp and tote my IV along to drop off my daughter at school. I had managed to arrange my schedule to avoid this so far and my cape helped hide the obvious. Of course, no one really cares but I prefer not to be the "sick" mom at school especially.

After convincing my daughter that she could wear leggings to school so she wouldn't freeze and change back into her pajama pants, we were off to the grocery store. I managed to pick up a paper and thought things were looking up until I went to pay for it and found that I left my debit card at home and had $2 cash in my wallet. I really need to visit the bank. So, my daughter agreed to bag the groceries and the check out lady agreed to make sure that she stayed there while I ran out to the car in the snow to get the checkbook.

Again, we were on our way to school. When we got to school, my friend saw me struggling to carry in all of the slumber party supplies and trying not to tangle up my IV. We had the needed blanket, pillow, robe, slippers, flashlight, stuffed dolphin, and of course, the cheese for the pizzas for snack. She offered to help and things were looking good until I realized that I did not have the pajama pants. Defeat. After convincing my daughter that she could really go into class in her leggings, I drove home. My friend followed me and picked up the pajama pants and took them back to school for me. I already owe her so many favors that I can't even keep track but it was a really great gift as I would have never heard the end of it. It also allowed me enough time to wash my hair between IVs and treatments which was really my only goal for the day.

As of this post, I am waiting for the nurse to arrive and draw my blood. She will come back after my next IV in about two hours to draw my blood again and change my dressing. It is right up there with clean hair and a little too exciting. My nurses think it is a little funny that I make a point to look out the window and ensure that I have no idea what they are doing or any of the sordid details. The doorbell is ringing...

Blessings,

Cindy

Take Care of My People

Last fall, I decided that I thought my grandparents needed a little more help. Of course, they didn't think so and I wasn't in a very good position to be more available. So, I called my aunt and told her what I thought. She told me that they didn't really want more help. I told her she could just use my name in vain and say that I made her do it.

So, last week, she rearranged her schedule to take my Grandpa to see his new cardiologist. I was dating my husband when my Grandpa had his first heart attack and he drove me to the airport to catch the first plan from Indy to Fargo. I have no interest in reliving that experience. So, I have a very vested interest in making sure that my charming Grandpa's ticker keeps up with him. The cardiologist made some plans for him that he is not at all excited about but he is going to go anyway. I told him it was okay to say that his bossy granddaughter made him do it.

The point is that sometimes you aren't in a position to help people the way that you really want to so you have to improvise. I am very thankful for my aunt who not only goes to the doctor with my grandparents but also calls me to reassure me that she went along and has the plan for their long, healthy life under control. Sometimes the best way to help someone is to help their people.

I have another favorite relative who has been sick this winter and not able to travel. I can tell that it is making her crazy as she keeps sending me email to make sure that I am still ticking. She is among my most faithful fans. One of the best ways to help is also to just take care of yourself and your body. I am really good about worrying about other people so this gives me a little less reason to worry.

Today I am thankful for my friends who indulged my request to get a pedicure yesterday. A little self care goes a long way in feeling better about life. I am also thankful to my aunt who brought my grandparents to visit for lunch today and encouraged my cousin's wife to bring her cute baby too. I told her that holding him is a lot like therapy without having to leave the house. My husband is traveling today so I am thankful for all the distractions that will keep us busy until my daughter realizes that Dad won't be home for dinner. I have managed so far to save that news for later. Lastly, I am thankful for my daughter's insistence about signing up for ice skating lessons. It really was a lot of fun to watch and we are still working on having more fun.

Blessings,

Cindy

Doctor Day

I should have posted this a little sooner but it is a little on the depressing side. So, the good news is that the efforts of my friends and family are paying off in the weight department. I have gained five pounds since landing in the big house which is no small accomplishment when your pancreas doesn't work right. The goal is to gain another five and then be able to maintain it.

My friend from church brought over yummy pasta and a playdough kit for my daughter last week. We have been busy making picnic food as a result. I would not have thought to bring the playdough but it was really fun and gave us something new to play. On Saturday, my mom arrived with steaks and hamburger from her favorite meat market. My husband made the steak on the grill this weekend and it was really good. We also went out for my favorite pizza. They sent me a coupon for $10 off for Customer Appreciation over the holidays. I might go there a little too often.

So, the bad news is that my PFTs were at an all time low on Friday. My doctor handled the whole thing very well. He is a glass half full kind of guy. I would follow him blindly most anywhere but I am more of a realist. So, all of this work with such ugly numbers left me in a bit of a funk. He assured me that he thinks they will bounce back if we stay the course. So, we have at least two more weeks of IVs. I also came home with appointments every two weeks for the next several months.

The vital statistics are looking better so that is a good sign and my journey with my treadmill continues. My blood work came back with low potassium so we have added that into my cocktail of meds and took out an oral antibiotic that the culture showed was likely not doing any good. We also restarted my oral antibiotic three times a day so the schedule is getting a little worse instead of better. However, it has a good track record so it is worth the effort.

My friend, David, is in the big house with pneumonia so please pray for him. He wasn't in church on Sunday and I imagine he is not too happy about it.

Blessings,

Cindy

Send flowers and go shopping

So, yesterday the dog was going crazy because the UPS man was outside. I assumed he was going to my neighbor's house until the doorbell rang. He brought me a bouquet of the most goregous roses you have ever laid eyes on. They look like someone painted them and are all different colors. The note with them said, "Keep your face to the sunshine and you cannot see the shadows." I later discovered that chocolates were tucked in the bottom of the box. Now, only your friends who know you really well would know to send roses and chocolate. My friend who sent them lived with me at one point in her life many years ago so she knows first hand about my crazy situation. The flowers were that much more fun to get since I didn't even know that she knew that I wasn't feeling good.

Earlier this week, my mom came to visit after running an errand for me. I had asked her to pick up a cape for me so I wouldn't freeze and wouldn't have to subject my IV to my jacket all the time. Since I declined the stitches, I tend to be a little overly cautious with my arm. She went shopping and came home with two sweaters which I determined were cute but not warm enough. So, she was not to be dissuaded. She went shopping again and arrived to visit with a darling new cape that she found at Macy's for me. She even bought the boring color that I would prefer but goes against her nature. She also found a wool sweater cape with a hood that I discovered is perfect for putting over my workout clothes in this glorious weather. So, now I am nice and warm which makes me happy and my Grandma especially happy.

The food train continues and I have been busy eating all sorts of fun things. My friend made tortilla soup which was new to me and really good. I have also had banana bread, cookies, jello, pudding pie, and the list goes on. One of my friends from church is bringing dinner later.

Today finds me waiting for PFTs this afternoon. I prefer to do them earlier and get it over with but time will tell. My daughter is going to go along as she likes to cheer while I blow in the magic box. So, if you happen to read this between now and then, think big, big numbers...

Blessings,

Cindy

Play Cards

Well, I have been home from the big house just over a week. We are wrapping up week two of IVs and have at least one more week to go. We will see what the PFTs say before anyone gets too excited or starts counting down the days. My husband handled cooking on the weekend which meant we got to eat out. A change of scenery is really nice even if you have to go home and take a nap after you eat.

My friends have the food train going again and I just have to say it is really great. I asked them not to tell the world that I was here again so they just pulled their own train together. There is something reassuring in knowing that your friends are going to show up with food and no one will care if you haven't washed your hair yet today. So, I have been eating really well with chicken pot pie, egg bake, and, rumor has it, today is my favorite take out chicken.

I have to say that I am really quite impressed that I have managed to pull off four vests a day. It is no small accomplishment. One of my other friends with CF told me that she does them around meal times and the last one before bed. I think it is helping as I was able to walk a little further on the treadmill yesterday. My self imposed pulmonary rehab is going pretty well and it is a lot better than arranging daycare and driving across town twice a week to do the same thing.

Yesterday, one of my friends came to visit and catch up and there is something also reassuring about hearing about the real world. It is apparently still out there and continues to go on. Today, another friend came to play cards and it was a great gift. She couldn't stay long but it was long enough to play one round of one of our favorite games. We used to play in high school so it looked a little different with a kid on each of our laps and another one of her kids busy coloring.

When I started my blog, it was my intention to help people know how to help without really having to spell it out. I didn't mean just me but anyone who isn't feeling well or could use a pick me up. You always hear people say they don't what to say or do. Sometimes you don't really have to say or do anything. You can just visit or play cards and hang out to make the time go a little faster.

Blessings,

Cindy

Sisterly Love

My sister and my two youngest nieces headed for home yesterday. I am used to being the older sister so it is a little odd to me for the roles to be reversed. My sister is very good at taking care of other people and making you think that she has nothing better in the world to do with her time. She arrives as if she just came across town rather than three hours in the van with two little kids.

In her two days away from home, she managed to drive us to speech and the library to replenish our supply of books. This is critical if you have been instructed to lay low and spend two hours a day hooked up to your vest machine shaking. Of course, if you add the seven hours a day on IVs and throw in a little rehab time on the treadmill, it creates a lot of reading time.

She also managed to take her two kids and my daughter to the grocery store to stock my house. I gave her a list and told her to get whatever else looked good. I will for sure send her again as my fridge looks so much better and she bought ice cream treats. Who can't use some of those to make you feel a little better about life? She was visiting me at the hospital when the dietician came to have a talk about my calories so she has the inside scoop on what to eat. By the time my sister was done cooking, she had made mashed potatoes with whole milk and hamburger gravy, browned hamburger for my freezer, shredded chicken for my freezer, made raspberry jello salad with extra heavy cool whip, and made my family dinner before she left and an extra dinner for my freezer.

The best part about her visit is that she is really good at making you forget that you are staying home. She picked up movies to watch and some to leave behind. When I mentioned getting a subscription to the paper, she came home from another run to the grocery with the daily paper and the ad to subscribe. She even managed to get in a game of Scrabble and do the dishes before she left.

So, today, as I was eating her leftover mashed potatoes and gravy and jello salad, I was especially thankful for my sister. I am also thankful for her husband and her mother-in-law who help cover for her while she is helping me and my older nieces who don't mind sharing her with me.

I was handling the whole deal pretty well until today and I think the lack of sleep is starting to get to me. My friend has been giving my daughter a ride home from school which allows me to do a vest and go back to sleep for a little while. It is a really great gift. She has the same gift that my sister has for making you feel like you are doing her a favor rather than the other way around. Tonight, my delivery man brought a new box of IVs and supplies. When I answered the door, he said, "I haven't seen you for a while." It was good while it lasted.

Blessings,

Cindy

The Big House

I should have seen the signs when I sat down for church on Christmas Eve. My husband was busy as an usher and my daughter was busy "helping" him. One of my home health nurses and her family sat down behind me in the last pew at the last service of the day. I wasn't sure at the time if this was a sign from God to prepare myself or accept the help of others. As it turns out, it was likely both.

I went back to the U last week on Wednesday. My friend was coming and I told her I wasn't sure if she should come or not as it might not be a really fun visit. She came anyway which worked out really well for me. Earlier in the week, I had discussed the pros and cons of a picc line versus a port and the big house versus my house with my other friend while our kids searched for library books. You can discuss a lot of life's problems at the library.

When the time came, it wasn't much of a decision. I did the PFTs, we saw the scores, and my bed was waiting. The only choice was whether to go home and pack my own pajamas or have someone bring them to me. I opted to go home and leave my car behind so I couldn't make a run for it. So, my friend packed up her two kids and my unhappy kid and drove me back. In the meantime, my in-laws came to stay the weekend with my husband and take over for my friend when she had to go back to Iowa.

I was hoping to go home on Monday but it was a University holiday so I couldn't do PFTs. I had to see the graph going in the positive direction and gain some weight in order to get bailed out. So, by Tuesday, things were looking up. I have a fancy new picc line and if it doesn't result in any blood clots, I will get a port a little further down the line. After my afternoon IVs, my husband was waiting in the circle drive. I never get tired of his cute face although he is getting more worry lines.

Today finds my daughter back at school and the next crew of help on the way. My sister and my niece are coming to play Barbie dolls for a few days and get me by until the weekend. She was already here last week as she is a little crazy but she made the time go by a lot faster and kept me distracted while I waited to get scheduled for a picc line.

The reality of the schedule is a little brutal but we will get used to it. I came home on one IV three times a day over two hours and another one once a day over an hour. I am also doing more vests and trying to lay low. Also, don't feel bad as I didn't really call anyone and tell them where I was for the last week. It didn't seem like very exciting news. I did call my husband at work and tell him that I was being sent to Paris for work. He managed very well without me which makes me a little nervous.

Blessings,

Cindy