Only sometimes do I feel like I might have a total emotional break down. Only sometimes do I cry. This is one of those times. I feel overwhelmed today with life in general. Cystic Fibrosis wears me down, and then I stop to really think about how I am feeling. Only sometimes do I feel guilty. Guilty for feeling helpless to cure my child of this fatal disease. Guilty for feeling like I am the one backed into a corner with no where to go. Why should I feel worn down when it is not me who carriers this disease everyday; the one who feels the physical effects of this disease every single day?
How is Lucy feeling when she has to be shaken by her vest day in and day out? How does Lucy feel when I constantly remind her to take her enzymes every single time she puts food in her mouth? How does Lucy feel when her rectum falls out of her body and have it pushed back in by her mommy? How does Lucy feel when she has horrible stomach aches and gas that clears a room? How does Lucy feel when she complains of a stomach ache and shits 10 times a day? How do I have any right to feel overwhelmed when it is Lucy who bears the real burden? Only sometimes do I feel selfish for having these feelings.
I wonder if she really knows any different. She just lives her life as she has always know it to be. For now, I bear the burden for her. I see other CF warriors fighting with all their strength and all the courage they can muster. I look up to them, but I also see Lucy's potential future. It is a huge weight on my heart. I want Lucy to grow up thinking she can do anything, fight CF with everything she has every single day, but how do I teach her these things, guide her in the right direction, when there are days when even I don't want to fight? How very selfish of me. Of course, I would never give up fighting for my daughter, but I will tell you, there are days when I wish CF would take a long walk off a short pier. Give Lucy and I a break. Only sometimes do I pity her, pity me. I do not want a fucking pity party. This post is certainly not for sympathy. I am venting. I am human and can only be happy so many days of the year. Today is my day to be pissed off, overwhelmed and fed up. I am a tired mom. My heart is tired, my hands are tired, and my head may explode today.
This semester is almost over. School ends in nearly 3 weeks. There will soon be no homework to consume the better part of my day, so that I may spend all of it with Lucy. I do not feel guilty about that. Summer will be good. Relaxing. I got mad at Lucy today. I feel guilty for shouting at her. She was only begging for the attention I was spending on an English paper. I can't wait until this semester is over. I apologized to her, but I still feel awful. How will I ever make it to my own goal if I am already overwhelmed with what I have on my plate. At this very moment, I feel weak. A very weak mom. How will I ever survive nursing school when I get there?
My eyes are swollen and my pillow is calling my name. Tomorrow will be a better day. Only sometimes do I feel low. Only sometimes do I feel like complaining. Today is that day. I'll wake up tomorrow feeling so much better.
Thursday, April 29, 2010
Saturday, April 24, 2010
Team Lucy Car Wash
Business was a little slow today at the Team Lucy Car Wash in Sacramento. We had beautiful 75 degree spring weather. We had a prime location on a corner zooming with heavy traffic. We had buckets, soap and plenty of towels. We had baked goods to sell, BBQ, and cold refreshments, but it seemed liked people had somewhere else to be.
We stood on the sidewalk waving our towels, hailing down cars to stop for a wash, but passers-by either honked or waved, but never pulled into our driveway. Our sign was amazing, but somehow not enough to grab the attention of the cell phone wielding drivers that drove by. About a half an hour into our washing, we actually witnessed a fender bender less than 100 yards away.
Lucy was so excited about her car wash. She stood on the grass, skin slathered in sunscreen, and yelled at the cars going by.
Our very first customer was a nice Sac State student who needed her bike cleaned. Badly. It looked as if it had been outside for the duration of the winter season. It was covered in cobwebs and crunchy leaves, but Lucy and I polished it up real nice!
I told my little helper that if we were going to find a cure for Cystic Fibrosis, it would take a little elbow grease to get it...
She was more than happy to help, and was able to reach places that were hard for an adult to get to.
One bicycle, three vehicles, and $137 later, we closed up shop and headed home. We had a lot of fun today, got some sun, and raised a few bucks for a cure. A extra special thank you to Jennifer, an old friend from high school, who came up with the idea and bought everything to fund the project. You made a big difference today and should be proud of yourself! Thank you!
We stood on the sidewalk waving our towels, hailing down cars to stop for a wash, but passers-by either honked or waved, but never pulled into our driveway. Our sign was amazing, but somehow not enough to grab the attention of the cell phone wielding drivers that drove by. About a half an hour into our washing, we actually witnessed a fender bender less than 100 yards away.
Lucy was so excited about her car wash. She stood on the grass, skin slathered in sunscreen, and yelled at the cars going by.
Our very first customer was a nice Sac State student who needed her bike cleaned. Badly. It looked as if it had been outside for the duration of the winter season. It was covered in cobwebs and crunchy leaves, but Lucy and I polished it up real nice!
I told my little helper that if we were going to find a cure for Cystic Fibrosis, it would take a little elbow grease to get it...
She was more than happy to help, and was able to reach places that were hard for an adult to get to.
One bicycle, three vehicles, and $137 later, we closed up shop and headed home. We had a lot of fun today, got some sun, and raised a few bucks for a cure. A extra special thank you to Jennifer, an old friend from high school, who came up with the idea and bought everything to fund the project. You made a big difference today and should be proud of yourself! Thank you!
The Billboard
Here is the Great Strides billboard in Sacramento located on the Sacramento State campus along Highway 50. I am so proud to have this up for everyone to see as they drive their commute everyday. It can be seen from the East and the West, from both sides! It is on a loop, sharing space with other advertisements, running about every five minutes. This will be running throughout the week so thousands of people will see it! I really hope this will create more CF awareness in the Sacramento area!
A special thank you to Kendra at Clear Channel Outdoors for setting up this billboard for us, and thank you to my friend Christy for introducing us!
A special thank you to Kendra at Clear Channel Outdoors for setting up this billboard for us, and thank you to my friend Christy for introducing us!
Thursday, April 22, 2010
Great Things For Great Strides
There are only 9 days left until the Cystic Fibrosis Foundation's Great Strides walk here in Sacramento, California. May 1st is the big day.
Team Lucy is coming together quite nicely. We have a confirmed total of 36 people, friends and family, that are walking with Lucy that morning to support our fight against CF. It is such a great thing that so many people are going out of their way to help us out, raising funds for a cure and showing up to walk for Lucy.
A friend of a friend works for a company that does digital media advertising in the Sacramento area. She has so kindly offered her services and free digital billboard space to help us spread awareness about Cystic Fibrosis and the Great Strides walk on May 1st. I have just looked at the rough creative plan before she adds it to the billboard. It is truly a great thing for our campaign! The location of this Great Strides billboard is in such a place that thousands of people will drive by it everyday on their commute. In Sacramento, along Highway 50 (the same highway that stretches over 3,000 miles from California to Maryland) near Sacramento State University, is where the billboard will be. I'll keep you all posted with pictures and the exact location. It should be finalized by tomorrow.
With the Team Lucy bake sale (that raised a total of $800 for CFF) behind us, we now have another upcoming fundraiser on Saturday. In Sacramento, on the corner of Freeport and Sutterville, Team Lucy members will be having a car wash, BBQ and bake sale to benefit the Foundation. Come by, grab some food, and relax while we pimp your ride. I am excited to see how much this great thing will raise for the foundation.
Team Lucy has raised an estimated $3,000 so far this year, and we won't be stopping as soon as we walk on May 1st. No way. We will continue to raise funds through the summer, adding more tomorrows everyday for the 30,000 CFers fighting this disease in the U.S. There are more great things in the works for Team Lucy and the Foundation. The next event that I am planning is still top secret, but I can guarantee you that it will be a homerun in the fundraising department!
Stay tuned...
Team Lucy is coming together quite nicely. We have a confirmed total of 36 people, friends and family, that are walking with Lucy that morning to support our fight against CF. It is such a great thing that so many people are going out of their way to help us out, raising funds for a cure and showing up to walk for Lucy.
A friend of a friend works for a company that does digital media advertising in the Sacramento area. She has so kindly offered her services and free digital billboard space to help us spread awareness about Cystic Fibrosis and the Great Strides walk on May 1st. I have just looked at the rough creative plan before she adds it to the billboard. It is truly a great thing for our campaign! The location of this Great Strides billboard is in such a place that thousands of people will drive by it everyday on their commute. In Sacramento, along Highway 50 (the same highway that stretches over 3,000 miles from California to Maryland) near Sacramento State University, is where the billboard will be. I'll keep you all posted with pictures and the exact location. It should be finalized by tomorrow.
With the Team Lucy bake sale (that raised a total of $800 for CFF) behind us, we now have another upcoming fundraiser on Saturday. In Sacramento, on the corner of Freeport and Sutterville, Team Lucy members will be having a car wash, BBQ and bake sale to benefit the Foundation. Come by, grab some food, and relax while we pimp your ride. I am excited to see how much this great thing will raise for the foundation.
Team Lucy has raised an estimated $3,000 so far this year, and we won't be stopping as soon as we walk on May 1st. No way. We will continue to raise funds through the summer, adding more tomorrows everyday for the 30,000 CFers fighting this disease in the U.S. There are more great things in the works for Team Lucy and the Foundation. The next event that I am planning is still top secret, but I can guarantee you that it will be a homerun in the fundraising department!
Stay tuned...
Saturday, April 17, 2010
Kissing Cousins
What another great day we had up in the hills with my brother and his family. Lucy adores her new cousin, who is only four weeks old, and dotes on him constantly. She wants to hold him. She wants to kiss him. She wants to touch him and feel how soft he is. He has that new baby smell that we all just love.
I really could have never imagined how much she would love something so new to her. A baby. A cousin. There was an instant bond between them. She is amazingly gentle and nurturing, always wondering when Dylan will get his mommy milk, and asking if he is sleeping.
It is truly breath-taking to watch my two year old run around the house reeking havoc on the dogs, couches and the piano, and then suddenly I see her stop everything she is doing. Her face softens, she smiles, and she plants the sweetest, softest kiss on his forehead , and then moves to the next crazy toddler task.
So sweet to see my baby be so gentle and conscience of another being that is so much smaller than she is.
I really could have never imagined how much she would love something so new to her. A baby. A cousin. There was an instant bond between them. She is amazingly gentle and nurturing, always wondering when Dylan will get his mommy milk, and asking if he is sleeping.
It is truly breath-taking to watch my two year old run around the house reeking havoc on the dogs, couches and the piano, and then suddenly I see her stop everything she is doing. Her face softens, she smiles, and she plants the sweetest, softest kiss on his forehead , and then moves to the next crazy toddler task.
So sweet to see my baby be so gentle and conscience of another being that is so much smaller than she is.
Seven-Fifty
So I realize that I have flaked a little on my blogging in the last few days, and I apologize. I have been planning a fundraiser this week for CFF, and it certainly kept me on my toes. I baked and baked and baked for almost 20 hours. I baked for CF. I baked for cure.
I am amazed by the love I felt today. After the bake sale, letting it all sink in, and letting myself relax with a glass of wine, it hit me. People really do care. People I have only just met, complete strangers, family and old friends, came out of the woodwork to buy baked goodies in honor of Lucy, to cure Lucy. I let it sink in and now I cry. I am exhausted and my kitchen is a utter disaster. I was not expecting the outcome that we had today!
I set up shop in the county government building where my mother works, strategically picking a date that fell on payday. Wink, wink. I posted an invite all over Facebook. I told everyone I knew locally to come down from 2 pm to 5 pm to buy some brownies for a great foundation, for Team Lucy. They could, without a doubt, help Lucy by purchasing a 7-layer magic bar. Oh, yes. All the proceeds of today's bake sale will go to CFF for research and a cure for Lucy!
I couldn't believe it. We got home, and my mom sat down and counted the donations in the box. When she told me the number, my knees got weak. For a little three hour bake sale, I was expecting to maybe raise around two hundred dollars, so when my mom told me that we raised $750 in funds, I felt warm and fuzzy inside. Was it warm and fuzzy from eating mass amounts of cookies and rice crispy treats all day? Nope. It was from the feeling I had inside knowing that my local community helped out my little girl.
I will fight to the death to find a cure for CF. I am not a research scientist, and I am not a doctor. Just a mommy who wants to see her baby grow up healthy and grow old. I wish I could just snap my finger and CF would be cured, but we all know that would be preposterous, so instead, I bake.
A special thank you to all the little baking elves (you know who you are) who helped bake some of the goodies for today's event, and to all the donors who came out to get a cookie or two! Because of you, we are 750 steps closer to finding a cure for Lucy. Thank you!
It really does take a village!
I am amazed by the love I felt today. After the bake sale, letting it all sink in, and letting myself relax with a glass of wine, it hit me. People really do care. People I have only just met, complete strangers, family and old friends, came out of the woodwork to buy baked goodies in honor of Lucy, to cure Lucy. I let it sink in and now I cry. I am exhausted and my kitchen is a utter disaster. I was not expecting the outcome that we had today!
I set up shop in the county government building where my mother works, strategically picking a date that fell on payday. Wink, wink. I posted an invite all over Facebook. I told everyone I knew locally to come down from 2 pm to 5 pm to buy some brownies for a great foundation, for Team Lucy. They could, without a doubt, help Lucy by purchasing a 7-layer magic bar. Oh, yes. All the proceeds of today's bake sale will go to CFF for research and a cure for Lucy!
I couldn't believe it. We got home, and my mom sat down and counted the donations in the box. When she told me the number, my knees got weak. For a little three hour bake sale, I was expecting to maybe raise around two hundred dollars, so when my mom told me that we raised $750 in funds, I felt warm and fuzzy inside. Was it warm and fuzzy from eating mass amounts of cookies and rice crispy treats all day? Nope. It was from the feeling I had inside knowing that my local community helped out my little girl.
I will fight to the death to find a cure for CF. I am not a research scientist, and I am not a doctor. Just a mommy who wants to see her baby grow up healthy and grow old. I wish I could just snap my finger and CF would be cured, but we all know that would be preposterous, so instead, I bake.
A special thank you to all the little baking elves (you know who you are) who helped bake some of the goodies for today's event, and to all the donors who came out to get a cookie or two! Because of you, we are 750 steps closer to finding a cure for Lucy. Thank you!
It really does take a village!
Monday, April 12, 2010
Generic Worries..
I am a little peeved with someone, but don't know where to pin the blame yet.
After using all of Lucy's samples of the new enzyme Zenpep that we received from Dr. Grumpy a couple of weeks ago, I went into our pharmacy to fill the prescription. I was told multiple times by our CF clinic, pulmonologist and others in the CF community, that taking a generic medication is not as effective in treating a CFer. These generics are said to be made with different, cheaper ingredients, and have been proven to be less effective.
I was asked by the pharmacy tech, when I dropped off the script slip, if it was okay if they filled the Zenpep with a generic version of the medication. I immediately told her that it was not okay, and that we were instructed to not give Lucy any generic pancreatic enzymes. All was fine and well as I watched her make a note in the computer.
Two days went by before I went to pick up the order, as I was told that they would have to order the Zenpep and it would be a day or two. I was told that Lucy's insurance would not fill the prescription with the Zenpep, and would only fill with the generic version. The tech said that they would give me a call when the order was properly approved and filled, pending the completion of a form to be filled out by one of the parties in question: insurance, doctor, or Eurand pharmaceuticals that manufactures Zenpep.
The doctor was called, and instructed the pharmacy once more that a generic enzyme was not to be used. Eurand pharmaceutical company, that makes Zenpep, claims that they also make the generic brand of the enzyme! What a coincidence...they must own the patent on the formula.
The claim is that the two products (Zenpep and the generic) are made in the same factory, and that the same exact formula is used in both!
The insurance company won't pay for the Zenpep, and tells the doctor to fill out some FDA report about adverse side effects of using generics versus the name brand.
This is all reported to me by the small, family owned pharmacy, where we have gotten most of Lucy's scripts in the last two years.
The doctor apparently didn't oblige the insurance company by writing that repost because I walked away with the generic version of Zenpep. Mind you, they are in the same exact brown, glass bottle as Zenpep, and they are manufactured and distributed by the exact same company, and allegedly are made from the exact same ingredients.
WE ARE WORKING WITH GENERIC PANCREATIC ENZYMES HERE!
My question and worry for all of you in the blog-o-sphere:
How is it possible that ONE company can make the exact same product, put similar labels on the bottles, and then charge drastically different prices for both?
If these things do not work for Lucy in any way, you can bet your sweet enzyme I'll be taking these generic pills back and demanding the name brand.
After using all of Lucy's samples of the new enzyme Zenpep that we received from Dr. Grumpy a couple of weeks ago, I went into our pharmacy to fill the prescription. I was told multiple times by our CF clinic, pulmonologist and others in the CF community, that taking a generic medication is not as effective in treating a CFer. These generics are said to be made with different, cheaper ingredients, and have been proven to be less effective.
I was asked by the pharmacy tech, when I dropped off the script slip, if it was okay if they filled the Zenpep with a generic version of the medication. I immediately told her that it was not okay, and that we were instructed to not give Lucy any generic pancreatic enzymes. All was fine and well as I watched her make a note in the computer.
Two days went by before I went to pick up the order, as I was told that they would have to order the Zenpep and it would be a day or two. I was told that Lucy's insurance would not fill the prescription with the Zenpep, and would only fill with the generic version. The tech said that they would give me a call when the order was properly approved and filled, pending the completion of a form to be filled out by one of the parties in question: insurance, doctor, or Eurand pharmaceuticals that manufactures Zenpep.
The doctor was called, and instructed the pharmacy once more that a generic enzyme was not to be used. Eurand pharmaceutical company, that makes Zenpep, claims that they also make the generic brand of the enzyme! What a coincidence...they must own the patent on the formula.
The claim is that the two products (Zenpep and the generic) are made in the same factory, and that the same exact formula is used in both!
The insurance company won't pay for the Zenpep, and tells the doctor to fill out some FDA report about adverse side effects of using generics versus the name brand.
This is all reported to me by the small, family owned pharmacy, where we have gotten most of Lucy's scripts in the last two years.
The doctor apparently didn't oblige the insurance company by writing that repost because I walked away with the generic version of Zenpep. Mind you, they are in the same exact brown, glass bottle as Zenpep, and they are manufactured and distributed by the exact same company, and allegedly are made from the exact same ingredients.
WE ARE WORKING WITH GENERIC PANCREATIC ENZYMES HERE!
My question and worry for all of you in the blog-o-sphere:
How is it possible that ONE company can make the exact same product, put similar labels on the bottles, and then charge drastically different prices for both?
If these things do not work for Lucy in any way, you can bet your sweet enzyme I'll be taking these generic pills back and demanding the name brand.
Sunday, April 11, 2010
The Kite
The weather this week was pleasant. Very sunny with enough wind to think about flying a kite. Lucy and I got our butterfly kite together and went outside, ready to send it high into the sky. By the time we got the kite ready by putting the kite tails on and making sure the string was not tangled, we went outside and the wind was not as strong as it was in the morning.
There were very strong gusts of wind lasting no more than 30 seconds, and then the wind would just die off completely! Our kite went no higher than 10 feet, and then would take a nose dive into the grass. I thought our kite-flying day was a dud. BUT...
Just like having Cystic Fibrosis, Lucy thought this grounded kite was the norm. She knows no different. I was extremely frustrated that this kite would not take flight. I wanted it to work so I could show her how high in the sky it could go. I was getting upset about our kite being grounded, but then I saw Lucy really enjoying herself. Lucy was more than happy to chase the kite as I dragged it on the ground, trying to step on the tails. Seeing that it didn't matter to her that our kite was not flying, I kept on dragging! I ran and ran and ran and ran, dragging the kite along. It would skip and hop across the grass, and Lucy would chase it and giggle and squeal with glee the entire time.
Lucy could care less about whether her kite would get off the ground. As hard as I tried to get that kite off the ground, it didn't matter to Lucy. Seeing the world through the eyes of Lucy makes me see that I don't always need the best of conditions to have fun or thrive. We can have fun with the conditions we are working with, taking full advantage of the sunny days. Neither CF nor a flightless kite can keep us from having fun!
There were very strong gusts of wind lasting no more than 30 seconds, and then the wind would just die off completely! Our kite went no higher than 10 feet, and then would take a nose dive into the grass. I thought our kite-flying day was a dud. BUT...
Just like having Cystic Fibrosis, Lucy thought this grounded kite was the norm. She knows no different. I was extremely frustrated that this kite would not take flight. I wanted it to work so I could show her how high in the sky it could go. I was getting upset about our kite being grounded, but then I saw Lucy really enjoying herself. Lucy was more than happy to chase the kite as I dragged it on the ground, trying to step on the tails. Seeing that it didn't matter to her that our kite was not flying, I kept on dragging! I ran and ran and ran and ran, dragging the kite along. It would skip and hop across the grass, and Lucy would chase it and giggle and squeal with glee the entire time.
Lucy could care less about whether her kite would get off the ground. As hard as I tried to get that kite off the ground, it didn't matter to Lucy. Seeing the world through the eyes of Lucy makes me see that I don't always need the best of conditions to have fun or thrive. We can have fun with the conditions we are working with, taking full advantage of the sunny days. Neither CF nor a flightless kite can keep us from having fun!
Tuesday, April 6, 2010
New Tricks
Lucy comes up with new tricks to show me everyday! Whether she is trying to plummet down her slide head first, singing "Jingle Bells" in April, or shoving a DVD into the VHS slot, she always manages to make me laugh daily. The other day she asked me if she could go to sleep on the stair...
There are things she comes up with on her own with no help or influence from me. It amazes me how a child can comes up with these new found tricks on her own, but somehow she manages with great imagination. She comes up with new tricks like using no hands to hold her cup...
On another note... I couldn't believe my eyes when I went to my stat counter for this blog this morning! Tuesday's stats shows that I had 3,974 page loads and 1,955 new visitors to my blog in a 24 hour period! Thanks to my "Not Me" Monday that was created by MckMama and the link to her page, I received more traffic in one day than I ever get in two months! Thanks to MckMama, there is a little more CF awareness out there in the blogger world!
There are things she comes up with on her own with no help or influence from me. It amazes me how a child can comes up with these new found tricks on her own, but somehow she manages with great imagination. She comes up with new tricks like using no hands to hold her cup...
On another note... I couldn't believe my eyes when I went to my stat counter for this blog this morning! Tuesday's stats shows that I had 3,974 page loads and 1,955 new visitors to my blog in a 24 hour period! Thanks to my "Not Me" Monday that was created by MckMama and the link to her page, I received more traffic in one day than I ever get in two months! Thanks to MckMama, there is a little more CF awareness out there in the blogger world!
Monday, April 5, 2010
"Not Me!" Monday
Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
No way! It was certainly not me who let Lucy eat junk all day yesterday. Lucy received 3 Easter baskets from certain family members, who loaded them with various candies that a toddler is sure to want. Hollow bunnies, Cadbury eggs, malt balls, marshmallow eggs and peanut butter eggs! There is no way I would ever let my two year old eat crap all day, snacks of chocolate intertwined with fruit salad and deviled eggs because that just wouldn't be healthy. I know better than to think solely of the high calories she is ingesting from all of that chocolate, as opposed to the unhealthy consequences of all that sugar being processed in such a little body.
It was not me who didn't even really hang out with Lucy all day yesterday. I spent most of my time in the kitchen while she played with another two year old, Mike. We would stop every once in a while just to get kisses or change a diaper, but she was so independent and busy. It's not me who is so sentimental about my little girl growing up so fast, and the thought of her one day no longer needing me around to dote on her constantly.
It is not me who quickly writes a blog post when I know darn well how much homework I have! I post things less and less, but know that we are all alive and doing WELL! Lucy is still using the new pancreatic enzyme Zenpep, and we'll be checking her weight over and over to see if there will be a significant gain. I am half way through my first semester back at school in 7 years, and doing very well! I have A's in both classes: intermediate algebra and English 1a.
Here are a few photos I was able to snap of things Lucy did not do yEASTERday...
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