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

Menu Plan Monday

I had been waiting and hoping for a day with no plans. The day arrived yesterday but it was a little boring. I think it is rather funny how you wish for time to get all of these great things done. However, given the time, I could find much more fun things to do than my long list. I spent the afternoon baking cookies after my darling daughter reminded me how I had promised to help her make them. She checked the butter over and over to see if it was soft yet. She also helped my husband clean the garage which I didn't think was fun at all but they both seemed to like it.

We were a little sad to bring my two youngest nieces back to their parents on Saturday. I didn't know it was actually possible to play Barbies for that length of time. I think it is fair to say that the investment in our new Barbie House paid for itself. Thanks to my friend who found it at a garage sale and was kind enough to deliver it for us!

I also spent part of yesterday working on the elusive menu plan and catching up with my college roommate. She suggested allrecipes.com which I don't typically use and I also found onceamonthmom.com which is just fun to read. The week ahead includes potato soup with ham, lasagna, and meatloaf. We have a busy week with two trips to the U, two days of school, swimming lessons, speech, and company. We are also about to kick off racing season with our first trip to Brainerd this weekend.

The IV schedule is 8, 4, and 12 right now so if I look a little tired, I attribute it to getting up at 1 a.m. to shut off the last IV. Today marks one week down and hopefully just two more to go...

Blessings,

Cindy

Perseverance

I spent Monday afternoon in the procedure room at the U watching Curious George and reading library books. I was fortunate to get approved for a supply of the antibiotic that is on shortage across the country. Apparently, an appeal to the powers that be resulted in a six week supply. We are only planning to use a three week supply but time will tell. When the nurse hooked up my IV for the test dose, my daughter said, "Mom, do we have to stay overnight?" I am not sure if she was relieved or disappointed that we couldn't order jello by room service.

Yesterday, we went to pick up my two youngest nieces who are visiting this week. Our first adventure was a stop for soup and pie. I got the strangest looks with three cute kids and the waitress eventually just said, "So, which one is yours?" We have been having a lot of fun with the exception of a few potty problems that I will leave out for you. I do fully understand why my sister is always cooking and cleaning when you call her house.

We are hoping to take in the zoo tomorrow afternoon if the weather cooperates. I am a little discouraged by still having this line in my arm but if kills the pseudomonas, it will be worth the effort. I think nap time is over.

Blessings,

Cindy

Garden Day

Earlier this week, we celebrated 8 years of married life! The whole family ended up at PF Chang's which was as delicious as ever. My daughter wanted to know if I was going to wear my wedding dress for dinner. She has a lot of big ideas. I spent part of our anniversary at the garden center. After church today, we were able to get most of my good ideas in the ground. I like to plan it, plant it, and then pray over it. I don't always keep up with the watering which tends to help.

The list included green beans (growing up the swing posts), a lonely tomato plant, and a new rose bush. I wasn't able to lift the magnolia that I hoped to buy so it will have to wait a little bit. Our strawberries are starting to flower and the raspberries continue to spread. I was very excited to see the lily of the valley starting to spread too. We moved them from the farm where I grew up.

Next week, we are hoping to get our garden at school growing again. We share it with another family which makes it a little bit more social and an extension of our preschool education. My daughter and her friend both like to help water and pick crops. We are also meeting this week with some of our friends about the driving schedule for our new CSA. It is quite a few miles south so we will go about every fourth week to pick up our share of farm veggies and deliver them. It is a lot of fun and forces you to eat more veggies and try things you might not pick up at the farmer's market.

I am especially thankful today that other people have the gift of music even if I don't reallly have it. I am also thankful for my husband who agrees to try my latest gardening idea and my daughter who digs with such enthusiasm. I am thankful to the librarian who helped me load our new encyclopedias in the car and to my sister who reassured me that they really are a good idea. I am also thankful to my friends who share their coupons and the great Diet Coke sale this week. (Did I mention it doesn't take much to make me happy?)

Blessings,

Cindy

Change the subject

I took a few days off due to company and the bloggeer system was being updated yesterday. A while ago, I promised to write about the thing that makes me the most crazy. Are you ready? This is the big reveal. Any guesses? I know at least a few readers will come up with the right answer.

My red hair goes right into action when people start talking about me. I mean we are really old now and there must be something else to talk about that might be more productive. I have heard a lot of speculation lately about what I am capable of or actually not able to do. I have to wonder if any of these folks have ever met me or can hear themselves talking. The thing is that it always comes full circle and reaches me. It is one of the reasons that I agreed to start a blog and end the "dicussions" and speculation. I am very capable of making my own decisions and handling the things that I agree to or otherwise I wouldn't agree. I really wish that people wouldn't underestimate me. I hope that when people do underestimate me, someone will speak up on my behalf and change the subject.

This brings us to Doctor Day again. I arrived without my daughter today and the lady at the front desk didn't recognize me. Everyone asked where she was from the front desk to the PFT lab to the nurses in training. We didn't have any big revelations today although there might be one drug that we try based on the culture results. We are still waiting to see if the drug is available as there is a shortage of it right now. I expect to visit the swimming pool in June especially since I finally bought a new suit!

We are still looking for your favorite recipes. Since I gave up chocolate, my weight could use some more calories. I did also start exercise again which helps my lungs but not my weight. It is a never ending battle.

Blessings,

Cindy

Doctor Day

My friend saw me in church for Mother's Day wearing normal clothes. I am afraid that the plan didn't work as we hoped and my picc line is still in my arm. We did manage to get a dressing change so we are free of nurse visits until we try again later this week.

I increased my Prednisone in hopes that we could get my lungs to cooperate. It is a little disappointing as I had almost finished getting off Prednisone. You have to reduce your dose gradually so it takes awhile.

The good news around here is that my daughter's first dance recital went better than could have been expected. She is now reconsidering her previously declared retirement.

We are looking forward to some seed shopping this week and beginning to work on our garden both at home and at school. The other good news is that our new shed has walls making more room for plants outside and around the shed. We also have acquired a new bike trailer from our friends so we are going to add that in the mix for our rehab plans. Swimming and yoga will still have to wait.

Blessings,

Cindy

Something More

When I first moved back to Minnesota, I rode to work with my husband. It was a good arrangement and included a lot of stopping for dinner on our way home. As my position changed, I drove a lot more often. Later, my office moved across the river which ended the car pool. On my way home, I would often turn up my music really loud as the traffic was terrible. One of my favorites was the country song, Something More.

One of the things that no one tells you about working in the field of philanthropy is that many of your donors will be older. You will learn all about them and visit their homes. You might even meet their extended family. Eventually, some of them will die on you. You will become a regular with the florist for funeral bouquets. The reverse is also true. Some of them wil be young. I made a visit for a memorial fund after a family buried their son. I will not likely ever forget that visit. I have helped a member of the U faculty set up a fund in her memory shortly before cancer won the battle. I even took my daughter to a memorial service of one of my most dedicated volunteers. On those days, the song always stuck with me.

I had one of those days today. I took my daughter to get her teeth cleaned before swimming lessons. She does a pretty good job brushing but she likes candy and she still doesn't drink white milk. By default, she drinks juice or chocolate milk. I heard the dreaded word cavity and I could feel my lip shake. It got worse when the dentist reassured me that they could do one side right now and I could schedule a visit to come back. I like going to the dentist on the same level that I like to go get a new picc line. I will do just about anything to avoid doing both. The sound of the drill on my darling daughter was enough to make me want to throw up on my shoes. When it was done, my daughter reached in the prize box and found me a sparkle blue ring to match hers. On our way to school later, we heard the song again. I don't think it applies to me anymore.

Blessings,

Cindy