Please don't be mad was the subject line of my friend's email. She had arranged a few meals for me next week. In her email, she explained that she was telling me, not asking me. I thought it was really funny since I can't say that I have ever been mad at her. Apparently, there is this notion that I don't accept help very well.
This week, I was struggling to say no to something that I really want to do. When I told my friend about it, she replied, "You are not doing that." Of course, she is right. Although, I hate to admit it.
I was hoping to be liberated of my 24 hour pump today but we are going to keep it going a few more days and maybe stop it at the end of next week. I am going to get my port placed on Thursday so we can check that off the list of new experiences. My darling husband and friends have it all worked out. So, I just have to show up at the appropriate time. I confirmed the order for sedation so I can rest better now. One of the nurses didn't think that I needed sedation to which my doctor replied, "She needs sedation." Can I just say that I really appreciate him even when I really don't like his plans for me?
Today, I am thankful for my cleaning lady who came to visit today. I am also thankful for my friends who arranged a fun lunch outing and visit from the other side of town. I am thankful for all the cooks in my life and two weeks of spring break from Chinese school on Saturday to hang out with my husband and my daughter.
Blessings,
Cindy
Friday, March 30, 2012
Saturday, March 24, 2012
Doctor Day
Doctor day didn't start as planned. Grandma was in charge of my darling daughter for the day but it just wasn't working out for all of us. So, the three of us headed to the U with one of us in our pajamas. You can guess which one was in her pjs.
So, the two pounds we gained last time left again. Really annoying...enough said.
The lung function went up slightly so the trend is in the right direction. We decided to stop one drug and give my kidneys a break. It also puts an end to the pre/post weekly blood draw visits from my nurse to check my drug levels.
The other drug is thought to work better over a longer time period so we went from 3 times a day over 2 hours each to 24 hours a day at the same dosage. So, you will now see me carrying a fancy black bag with an IV and pump hiding inside. While the bag is a drag, I am looking forward to getting more sleep and being able to go to bed earlier.
The next adventure is getting scheduled for a port. Most people have them in their upper chest but that doesn't work for me due to my vest. I had just resigned myself to one in my arm which would eliminate my need for going to visit radiology to get picc lines. The port can just stay in when it isn't being used. I am signed up to get a double port instead of a single so I can run multiple drugs at the same time. I feel pretty good considering I sound terrible when you read all of this.
On another note, I have a prayer request. My friend, Jen, is being treated for rejection over the next few days from her lungs. She had a transplant a couple of years ago and is facing some complications. Please pray, pray, pray.
Blessings,
Cindy
So, the two pounds we gained last time left again. Really annoying...enough said.
The lung function went up slightly so the trend is in the right direction. We decided to stop one drug and give my kidneys a break. It also puts an end to the pre/post weekly blood draw visits from my nurse to check my drug levels.
The other drug is thought to work better over a longer time period so we went from 3 times a day over 2 hours each to 24 hours a day at the same dosage. So, you will now see me carrying a fancy black bag with an IV and pump hiding inside. While the bag is a drag, I am looking forward to getting more sleep and being able to go to bed earlier.
The next adventure is getting scheduled for a port. Most people have them in their upper chest but that doesn't work for me due to my vest. I had just resigned myself to one in my arm which would eliminate my need for going to visit radiology to get picc lines. The port can just stay in when it isn't being used. I am signed up to get a double port instead of a single so I can run multiple drugs at the same time. I feel pretty good considering I sound terrible when you read all of this.
On another note, I have a prayer request. My friend, Jen, is being treated for rejection over the next few days from her lungs. She had a transplant a couple of years ago and is facing some complications. Please pray, pray, pray.
Blessings,
Cindy
Sunday, March 18, 2012
Bring me along
So, last week, the nurse came to visit and it was the first time in 2012 that someone thought my lungs actually sounded pretty good. Of course, the box tells the tale so we will try again next week but a girl can hope. The picc line is really bringing down my wardrobe options in this great weather.
I also managed to get my hair cut and my stylist solved my latest life dilemna. It is funny how she is supposed to just cut my hair but is very willing to tell you what she really thinks. Of course, she has been along for the ride and cut my hair off on several occassions when I didn't feel so good so she knows a little more than she should.
On Friday, my darling nephews and their parents arrived from Indiana. Their parents went to see some friends so we were able to hang out and get caught up. I haven't laughed that much in a very long time. My youngest nephew also brought along a host of electronic devices that he taught me how to use. I need someone to bring me along. I asked how to make the screen smaller and my daughter walked over and said, "You just pinch it Mommy." Apparently, my five year old has surpassed my skill level which I thought was at least decent.
Today finds us with no company and yummy leftovers that my sister-in-law left behind for us. I am hoping to get a little motivated and find the bottom of my laundry basket along with a number of household chores. I am very much looking forward to spring break this week and planning to have a little fun. We already made it to the Grossology exhibit at the Children's Museum so we can check that off.
Blessings,
Cindy
I also managed to get my hair cut and my stylist solved my latest life dilemna. It is funny how she is supposed to just cut my hair but is very willing to tell you what she really thinks. Of course, she has been along for the ride and cut my hair off on several occassions when I didn't feel so good so she knows a little more than she should.
On Friday, my darling nephews and their parents arrived from Indiana. Their parents went to see some friends so we were able to hang out and get caught up. I haven't laughed that much in a very long time. My youngest nephew also brought along a host of electronic devices that he taught me how to use. I need someone to bring me along. I asked how to make the screen smaller and my daughter walked over and said, "You just pinch it Mommy." Apparently, my five year old has surpassed my skill level which I thought was at least decent.
Today finds us with no company and yummy leftovers that my sister-in-law left behind for us. I am hoping to get a little motivated and find the bottom of my laundry basket along with a number of household chores. I am very much looking forward to spring break this week and planning to have a little fun. We already made it to the Grossology exhibit at the Children's Museum so we can check that off.
Blessings,
Cindy
Monday, March 12, 2012
Doctor Day
Last week, I had the good fortune to go the Doctor with one of my friends. I thought she was a little crazy leaving her two cute kids behind to ride along to the U but I didn't argue. We started our journey by meeting up at our local makeup store to leave a car. We both ended up with new makeup that we will likely hardly ever use. I have this theory that if you fake it a little better, the general population will at least think that you feel good.
We spent most of our time catching up on life which is kind of funny since we see each other multiple times a week at school, church, lunch, and so on. However, we almost always have very talkative kids wiht us so we rarely finish a conversation unless they happen to be busy practicing their choir songs. I determined that my friend must be some sort of good luck charm.
The ugly graph is still ugly but positive rather than negative. When I asked how much longer we would continue all this fun, my doctor simply responded, "a long time." Well, that isn't very encouraging. I must have made a bad face or something because he said we would see again in two weeks. I also managed to gain two pounds which is on track with what a CF patient can be expected to gain in a two week period.
In the end, we determined that maybe I just needed summer to roll around again. I did manage to get to the park twice this weekend and ride my bike which was super exciting! We are looking forward to spring break next week! I am not looking forward to next year when we have school five days a week. Sigh.
Blessings,
Cindy
We spent most of our time catching up on life which is kind of funny since we see each other multiple times a week at school, church, lunch, and so on. However, we almost always have very talkative kids wiht us so we rarely finish a conversation unless they happen to be busy practicing their choir songs. I determined that my friend must be some sort of good luck charm.
The ugly graph is still ugly but positive rather than negative. When I asked how much longer we would continue all this fun, my doctor simply responded, "a long time." Well, that isn't very encouraging. I must have made a bad face or something because he said we would see again in two weeks. I also managed to gain two pounds which is on track with what a CF patient can be expected to gain in a two week period.
In the end, we determined that maybe I just needed summer to roll around again. I did manage to get to the park twice this weekend and ride my bike which was super exciting! We are looking forward to spring break next week! I am not looking forward to next year when we have school five days a week. Sigh.
Blessings,
Cindy
Sunday, March 4, 2012
Call
We are working week 9 on IVs and I have to say the routine gets old really fast. I have a pretty good attitude for the first few weeks but by this point, it has faded. I was in an awkward conversation this week about how much time I had left on IVs. Well, if I knew, I could put that on my giant calendar and plan accordingly. People have good intentions but when you start explaining things that aren't really so inspiring, the conversation wraps up quickly.
My family just left for the grocery so it is really quiet at our house aside from my dog barking. We had steak for dinner and you would have thought he was trying to save us or just get some for himself. I told my daughter to help her dad pick things out at the store and she replied, "Well, he can read." I guess she has a point. We spent part of the day with the princesses at Disney on Ice. My clothes tell the story as they are full of glitter.
I have a date this evening with my couch which is really exciting. My cousin was driving through my part of town and called on his way home. It is a good reminder to me to call more often and vice versa. I used to be a really good phone talker but my schedule now cuts into my time on the phone. Although, my sister has adapted and talks over the noise of my vest (at least the slower settings).
We went to look at a model home yesterday just for fun with our friends. Of course, it was goregous except the garage was a little small. It reminds me how life looks with no piles of highly important papers, art work, or dirty dishes. I am curious if anyone's house really looks like that.
Blessings,
Cindy
My family just left for the grocery so it is really quiet at our house aside from my dog barking. We had steak for dinner and you would have thought he was trying to save us or just get some for himself. I told my daughter to help her dad pick things out at the store and she replied, "Well, he can read." I guess she has a point. We spent part of the day with the princesses at Disney on Ice. My clothes tell the story as they are full of glitter.
I have a date this evening with my couch which is really exciting. My cousin was driving through my part of town and called on his way home. It is a good reminder to me to call more often and vice versa. I used to be a really good phone talker but my schedule now cuts into my time on the phone. Although, my sister has adapted and talks over the noise of my vest (at least the slower settings).
We went to look at a model home yesterday just for fun with our friends. Of course, it was goregous except the garage was a little small. It reminds me how life looks with no piles of highly important papers, art work, or dirty dishes. I am curious if anyone's house really looks like that.
Blessings,
Cindy
Subscribe to:
Posts (Atom)