GearUp4CF is a unique CF fundraiser. Starting in Vancouver, 19 riders will cycle 1200 kilometres in nine days, through three mountain ranges to Banff. Talk about an opportunity to raise money and awareness for CF! Each rider was expected to raise $5000 for CF, and this year's group total is over $110,000! The ride has raised over half a million dollars since it began five years ago.
The coolest part is... Kitty Chavarie, one of the participants, is riding for ME! Our connection is an interesting one. Kitty lives in Chemainus, BC which is on Vancouver Island. Kitty was looking for someone with CF to dedicate her ride to. She knew somebody who knew my husband's parents, who also live on the Island. They met each other and the rest is history! There was even an article in one of the Island newspapers about it.
Kitty and I are facebook friends, but I can't wait to meet her in person. It takes a special kind of person to take on this kind of challenge. I hope to cheer her on as she crosses the finish line on June 27th!
For more information about the ride, you can visit their website at gearup4cf.org or the blog at gearup4cf2010.blogspot.com. The riders are blogging as they go, so you can follow their progress. They are already on their way!
Tuesday, June 22
Monday, June 21
Having a Moment Here...
This afternoon it hit me. The whole dependence thing. I know I am so lucky to have an awesome husband that cares so much and other family members that are willing to help out. But it's still hard to ask for help. Usually I just get in a routine and don't think about it too much, but today it came to the forefront. I need someone to take me to clinic on Wednesday. Usually my husband goes to work super early on those days and then comes home to pick me up, we go to clinic, he drops me back off, and then he returns to work. He got a recent promotion (yay!) but that means there's more work to do! He's been so busy lately that I feel bad every time I need to take him away from work to help me. But I can't leave the house alone. It's too hard.
I've already been active on the list for over five months. Nobody believed it would take so long, and I think the waiting is getting to us. It means that quite a few family members have changed the way they live for me. No more vacations, no more leaving the house without a cell phone, and no more fun. Okay, maybe I'm exaggerating a bit! I appreciate it so much, but I feel bad that I just take, take, take. And I know when I get my transplant, I'll need them even more.
I know I'd do the same for one of them, but that doesn't help the current situation. I think the bottom line is that I'm ready for transplant already!
Ah, nothing like a little venting to make myself feel better. Now back to my usual cheery self!
I've already been active on the list for over five months. Nobody believed it would take so long, and I think the waiting is getting to us. It means that quite a few family members have changed the way they live for me. No more vacations, no more leaving the house without a cell phone, and no more fun. Okay, maybe I'm exaggerating a bit! I appreciate it so much, but I feel bad that I just take, take, take. And I know when I get my transplant, I'll need them even more.
I know I'd do the same for one of them, but that doesn't help the current situation. I think the bottom line is that I'm ready for transplant already!
Ah, nothing like a little venting to make myself feel better. Now back to my usual cheery self!
Saturday, June 19
What a Week!
Phew! I'm glad this week is behind me now! My problems started on Tuesday, when I developed some severe stomach pains in the morning. I don't know what they were from, but they were the most intense stomach cramps I'd ever had. I couldn't eat, couldn't do physio and couldn't focus on anything. I didn't sleep much that night. By Wednesday afternoon the pain hadn't let up at all and I saw my CF doctor who figured it out pretty quickly.
Apparently, it's a common CF issue. It's never happened to me before, and I still can't believe it hurt so much. After some percocets for pain and a couple of procedures, my bowels seem to be working again. I am eating again and doing physio. I hope to return to my workouts on Monday.
In more exciting news, Piper got her lung transplant! I am so excited for her. She seems to be improving in leaps and bounds. Go Piper!
In other tx news, one of the people from my Edmonton group got their call. Unfortunately, it turned out to be a false call. The surgery was cancelled right before it was scheduled to begin. I can only imagine how devastating that would be... but better to hold out for the right set of lungs. So my friend is back to the waiting game. Hopefully her next call will be soon!
Apparently, it's a common CF issue. It's never happened to me before, and I still can't believe it hurt so much. After some percocets for pain and a couple of procedures, my bowels seem to be working again. I am eating again and doing physio. I hope to return to my workouts on Monday.
In more exciting news, Piper got her lung transplant! I am so excited for her. She seems to be improving in leaps and bounds. Go Piper!
In other tx news, one of the people from my Edmonton group got their call. Unfortunately, it turned out to be a false call. The surgery was cancelled right before it was scheduled to begin. I can only imagine how devastating that would be... but better to hold out for the right set of lungs. So my friend is back to the waiting game. Hopefully her next call will be soon!
Thursday, June 10
The Hard Truth
Time to buckle down and write about one of the things that bothers me the most about my current situation. I have done a lot of new things over the last two years, thanks to my declining lung function. Most of those things I have done with little complaint, like start to wear oxygen in public or have frequent courses of IVs. Sure, all of that stuff is annoying, but I just do it.
I don't care who sees me sick or tired or coughing. But when I think about my two nephews and niece seeing me sick, it really bothers me. I don't want their memories of me to be ones where I'm sick. My niece is four and she probably doesn't remember me before I was sick. When her mom says they're going to see Sandy, she asks if I'm at home or at the hospital. If I'm at the hospital, then she asks what they are going to bring me for lunch. She knows the routine. She knows how to make the hospital bed go up and down and how to turn on the tv. She knows that I always have cookies or gummies or pudding cups for dessert. And she knows that I will proudly display any artwork she gives me.
The boys are older, nine and seven, and I know they remember me before I got sick. I want them to remember how I used to be fun and creative and full of energy. That I never said no to joining in on a game of pretend. That I would run and play outside until it was bedtime. That I would climb up the stairs to tuck them into bed. How can I be sure that they don't lose these memories?
During my last hospital stay, my sister and brother in law and my nephews and niece were all together with my husband and I for a visit in my room. We joked about what kind of transplant everyone needed (with mine being obvious!) and what kind of person they were. For example, my younger nephew is a natural athlete and loves all sports, so he became "Sporty Boy." Guess what my nicknames were? "Sick Girl" and "Hospital Girl." Sure, I laughed because it was funny, and true. We all roared with laughter. But I hope that my nicknames change soon.
Out of all the things that have come my way in the last two years, this one is hard on me. I know that my nephews and niece can learn things about this experience, like helpfulness and compassion and empathy. I know that they will be better for it. But it's still hard.
I don't care who sees me sick or tired or coughing. But when I think about my two nephews and niece seeing me sick, it really bothers me. I don't want their memories of me to be ones where I'm sick. My niece is four and she probably doesn't remember me before I was sick. When her mom says they're going to see Sandy, she asks if I'm at home or at the hospital. If I'm at the hospital, then she asks what they are going to bring me for lunch. She knows the routine. She knows how to make the hospital bed go up and down and how to turn on the tv. She knows that I always have cookies or gummies or pudding cups for dessert. And she knows that I will proudly display any artwork she gives me.
The boys are older, nine and seven, and I know they remember me before I got sick. I want them to remember how I used to be fun and creative and full of energy. That I never said no to joining in on a game of pretend. That I would run and play outside until it was bedtime. That I would climb up the stairs to tuck them into bed. How can I be sure that they don't lose these memories?
During my last hospital stay, my sister and brother in law and my nephews and niece were all together with my husband and I for a visit in my room. We joked about what kind of transplant everyone needed (with mine being obvious!) and what kind of person they were. For example, my younger nephew is a natural athlete and loves all sports, so he became "Sporty Boy." Guess what my nicknames were? "Sick Girl" and "Hospital Girl." Sure, I laughed because it was funny, and true. We all roared with laughter. But I hope that my nicknames change soon.
Out of all the things that have come my way in the last two years, this one is hard on me. I know that my nephews and niece can learn things about this experience, like helpfulness and compassion and empathy. I know that they will be better for it. But it's still hard.
Tuesday, June 8
The Wait Continues
The last few days have been pretty good. I am getting my strength back and I am feeling better than usual, thanks to my two-week hospital stay. The weather this weekend was pleasant and my husband did a bunch a yardwork while I supervised from my lawn chair. Everything is green now and it's such a welcomed change!
I checked a couple of things off my list this week. I had my hearing tested, and I'm a bit surprised that the results are normal. I have been asking people to repeat themselves much more often lately. Perhaps it's due to my lack of attention span, thanks to the transplant wait. My husband is experiencing it too. We can't concentrate on things even when we want to. I love to read but I haven't touch the stack of books waiting for me. I love to scrapbook, but a few minutes here and there is all I can manage. I lose my train of thought easily and I drift off mid-conversation. Whoops, I just did it now! Back to my list! I also had a vaccination yesterday, pneumo-p. That's the last shot I need before transplant! Check!
I checked a couple of things off my list this week. I had my hearing tested, and I'm a bit surprised that the results are normal. I have been asking people to repeat themselves much more often lately. Perhaps it's due to my lack of attention span, thanks to the transplant wait. My husband is experiencing it too. We can't concentrate on things even when we want to. I love to read but I haven't touch the stack of books waiting for me. I love to scrapbook, but a few minutes here and there is all I can manage. I lose my train of thought easily and I drift off mid-conversation. Whoops, I just did it now! Back to my list! I also had a vaccination yesterday, pneumo-p. That's the last shot I need before transplant! Check!
Tuesday, June 1
There's No Place Like Home!
I was discharged yesterday afternoon and it feels great to be back home. I must say that this was the smoothest hospitalization ever. No disasters and no roommates! Two weeks is still a long time to be away from home though. Home cooked meals have never tasted so good! I am happy to unpack, see my dog and get back into the swing of things!
My port was flushed and deaccessed before I left. That means I am IV-free! I am actually completely antibiotic-free as well. We have decided to discontinue the two oral antibiotics that I've been on opposite of Tobi. In two weeks I will start my Tobi rotation (two weeks on, two weeks off).
For my shortness of breath, we have come to a compromise. I have repeatedly turned down that "anti-anxiety medication," which I found out is actually an anti-depressant. That is still on the radar screen, but let's call it Plan B. What is Plan A you ask? A fentanyl patch. I tried a low dose patch, worn for 72 hours, in the hospital to check for side effects. The idea is that the patch will help me with those episodes of breathlessness. I think it's worth a try. My shortness of breath isn't like a panic attack or a sudden change, it's a gradual change in my breathing that persists for days.
I worked out for the first time in weeks this afternoon. I have been looking forward to returning to my workouts. My legs are shaky when I stand up, so I think I lost some muscle mass in hospital. I hope to get it back soon so I can be ready for surgery!
My port was flushed and deaccessed before I left. That means I am IV-free! I am actually completely antibiotic-free as well. We have decided to discontinue the two oral antibiotics that I've been on opposite of Tobi. In two weeks I will start my Tobi rotation (two weeks on, two weeks off).
For my shortness of breath, we have come to a compromise. I have repeatedly turned down that "anti-anxiety medication," which I found out is actually an anti-depressant. That is still on the radar screen, but let's call it Plan B. What is Plan A you ask? A fentanyl patch. I tried a low dose patch, worn for 72 hours, in the hospital to check for side effects. The idea is that the patch will help me with those episodes of breathlessness. I think it's worth a try. My shortness of breath isn't like a panic attack or a sudden change, it's a gradual change in my breathing that persists for days.
I worked out for the first time in weeks this afternoon. I have been looking forward to returning to my workouts. My legs are shaky when I stand up, so I think I lost some muscle mass in hospital. I hope to get it back soon so I can be ready for surgery!
Sunday, May 30
Great Strides
Today was our Great Strides walk. I was so excited for the walk this year. I have been participating in the walk long before it was called Great Strides. My friends and family have been walking along with me, particularly these last few years. Last year, my husband as team captain stepped up the fundraising side of things. This year we continued to build on that. I'm SO proud to say that...
Team Smith raised over $23,000 for CF!!!
Team Smith was the #1 team in our city!!!
Of the top walkers, my sister & brother in law were #2 in our city!!!
Team Smith was the #10 top team in Canada!!!
38 people walked for me!!!
Team Smith had over 200 sponsors!!!
Despite the cold weather (yes, it was snowing early this morning) we had a wonderful turnout. Everyone went above and beyond to raise money and awareness for CF. I am moved to tears when I think about how many people care about me and are trying to help raise money to find a cure for CF. I don't know what I did to deserve so many wonderful people in my life. It makes me feel happy and loved! The walk always feels like my birthday- a special day just for me! I couldn't ask for more- all of my favorite people together in one place!
It's also special that we actually know some brilliant CF researchers who are making a difference in CF... and have personally helped me with their research. It is so exciting to hear what's happening firsthand and to see the "great strides" they have made, particularly in the microbiology area. It is fascinating!!!
Looking forward to the day when CF stands for Cure Found!
Team Smith raised over $23,000 for CF!!!
Team Smith was the #1 team in our city!!!
Of the top walkers, my sister & brother in law were #2 in our city!!!
Team Smith was the #10 top team in Canada!!!
38 people walked for me!!!
Team Smith had over 200 sponsors!!!
Despite the cold weather (yes, it was snowing early this morning) we had a wonderful turnout. Everyone went above and beyond to raise money and awareness for CF. I am moved to tears when I think about how many people care about me and are trying to help raise money to find a cure for CF. I don't know what I did to deserve so many wonderful people in my life. It makes me feel happy and loved! The walk always feels like my birthday- a special day just for me! I couldn't ask for more- all of my favorite people together in one place!
It's also special that we actually know some brilliant CF researchers who are making a difference in CF... and have personally helped me with their research. It is so exciting to hear what's happening firsthand and to see the "great strides" they have made, particularly in the microbiology area. It is fascinating!!!
Looking forward to the day when CF stands for Cure Found!
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