Friday, February 23, 2007
Great Strides Update
Real generosity toward the future lies in giving all to the present.
--Albert Camus
People's spirit of generosity overwhelms me. Last year was the first time I had ever done anything with the Cystic Fibrosis Foundation. I thought I'd start small and do a letter writing campaign, just to give it a try. Afterall, sending a few emails out into cyberspace didn't really seem like a big deal. Almost within a week of clicking that "send" button, the donations started rolling in. At first they came in a few at a time. Then the deluge started! By the end of the Great Strides season, more than $5000 had come in.
Some people I never even expected to respond sent in generous donations. One of my former college professors not only made a large donation, but wrote a very touching note for me as well. I was humbled, and I was awed.
This year I'm doing a letter again, and I'm thrilled to report that it's off to a running start! In just a few weeks people have generously contributed enough to help me reach the 20% mark of my goal. With 4 months to go between now and the Great Strides Walk. Please help me by donating to this worthy causes. Your generous donations help fund much needed research that seeks to find ways that help people with Cystic Fibrosis live longer, healthier, happier lives.
You can donate by following this link, which takes you to my personal fund raising page on the Cystic Fibrosis Foundation's website.
Lauren's CF Great Strides Home Page
Some people I never even expected to respond sent in generous donations. One of my former college professors not only made a large donation, but wrote a very touching note for me as well. I was humbled, and I was awed.
This year I'm doing a letter again, and I'm thrilled to report that it's off to a running start! In just a few weeks people have generously contributed enough to help me reach the 20% mark of my goal. With 4 months to go between now and the Great Strides Walk. Please help me by donating to this worthy causes. Your generous donations help fund much needed research that seeks to find ways that help people with Cystic Fibrosis live longer, healthier, happier lives.
You can donate by following this link, which takes you to my personal fund raising page on the Cystic Fibrosis Foundation's website.
Lauren's CF Great Strides Home Page
Random Observation of the Day
Today I was back at the hospital for yet another round of pulmonary function tests. It has been exactly a week since I last had these done. At that time the trees were covered in white buds and my lungs were expelling green buds. Now, a week later, the trees are covered in green buds and my lungs are expelling white ones. Interesting, no?
My PFTs were not quite as stellar as last week, but they weren't lousy. My FEV1 had dropped from 2.13L to 1.97L. Doesn't sound like a big deal, but I'm not sure what the doc will decide about continuing the IVs or not. I think the course of IVs has been fine, it's these other meds that are driving me a little crazy. I took my medication for insomnia about 3 hours ago. I tried to go to bed and sleep didn't come. I seem to be having a mild "manic" episode too right now. I've had that "superwoman" feeling all day and my brain just wouldn't shut up about all these cool ideas that I doubt will ever actually come to fruition.
In my mind, I was going to be a dynamo. In reality...well, I managed to get dinner on the table for us. I've been talking Brad's ear off for about 2 days straight now. Or at least I've been trying to. I've been having this weird thing where in the middle of a sentence a piece of my vocabulary apparently falls through some trap door in my brain that I don't remember installing. Common words elude me sometimes, or I'll come up with a related word, but not the correct one. Like tonight at dinner I meant to say "aviator" but the closest I could get was "airplane."
Maybe I should try "fixing" the DVD player with a fork again and see if that doesn't help reset my brain. (Just kidding, Brad...I'll use a paperclip this time :-P )
My PFTs were not quite as stellar as last week, but they weren't lousy. My FEV1 had dropped from 2.13L to 1.97L. Doesn't sound like a big deal, but I'm not sure what the doc will decide about continuing the IVs or not. I think the course of IVs has been fine, it's these other meds that are driving me a little crazy. I took my medication for insomnia about 3 hours ago. I tried to go to bed and sleep didn't come. I seem to be having a mild "manic" episode too right now. I've had that "superwoman" feeling all day and my brain just wouldn't shut up about all these cool ideas that I doubt will ever actually come to fruition.
In my mind, I was going to be a dynamo. In reality...well, I managed to get dinner on the table for us. I've been talking Brad's ear off for about 2 days straight now. Or at least I've been trying to. I've been having this weird thing where in the middle of a sentence a piece of my vocabulary apparently falls through some trap door in my brain that I don't remember installing. Common words elude me sometimes, or I'll come up with a related word, but not the correct one. Like tonight at dinner I meant to say "aviator" but the closest I could get was "airplane."
Maybe I should try "fixing" the DVD player with a fork again and see if that doesn't help reset my brain. (Just kidding, Brad...I'll use a paperclip this time :-P )
Saturday, February 17, 2007
Answered Prayers
I am extremely blessed to have a large support network of family and friends who not only encourage me emotionally, but spiritually. The majority of these people are God-fearing individuals who know how powerful prayer is. Last Friday when I was admitted to the hospital, we immediately let our support people know what was up.
So many people were praying for me, and God saw fit to answer the prayers in wonderful ways. I had a respiratory therapist who was a big fan of the arts, so we enjoyed comparing notes on San Diego's fine arts--he wasn't a Wagner fan though, but I let that one go...hehehe. Other good things about this "tune up" as we call them, were that not only did my lung function improve dramatically in only a matter of days, but I didn't have any problems with the nurses (sometimes I get nurses who are ignorant of CF patients' unique needs), my mood stayed chipper, my doc got me on the right combination of meds, and, my weight didn't drop! So many incredible blessings, all of which I believe were God's way of reminding me that I'm never out of his reach.
God is good ALL the time. I came across a wonderful quote in a sermon from 1608 that has helped me put trials and trouble into perspective. I can't quote it verbatim, but the main point was that "if life is easy, than it's probably too easy to be the right path to heaven." It helps me understand better what it is to rejoice in suffering.
So many people were praying for me, and God saw fit to answer the prayers in wonderful ways. I had a respiratory therapist who was a big fan of the arts, so we enjoyed comparing notes on San Diego's fine arts--he wasn't a Wagner fan though, but I let that one go...hehehe. Other good things about this "tune up" as we call them, were that not only did my lung function improve dramatically in only a matter of days, but I didn't have any problems with the nurses (sometimes I get nurses who are ignorant of CF patients' unique needs), my mood stayed chipper, my doc got me on the right combination of meds, and, my weight didn't drop! So many incredible blessings, all of which I believe were God's way of reminding me that I'm never out of his reach.
God is good ALL the time. I came across a wonderful quote in a sermon from 1608 that has helped me put trials and trouble into perspective. I can't quote it verbatim, but the main point was that "if life is easy, than it's probably too easy to be the right path to heaven." It helps me understand better what it is to rejoice in suffering.
Thursday, February 15, 2007
Still In the Hospital
I assert that nothing ever comes to pass without a cause.
--Jonathan Edwards
I was admitted last Friday afternoon, and I don't expect to get out before next week. So far things are going pretty well. I think a lot of it has to do with the fact that I'm not stuck in here during a season of major holidays. Of course, yesterday was Valentine's Day, but Brad and I aren't in the habit of making a big deal of that. We did enjoy a nice take-out dinner for a "date". It was nice to be disconnected from the IV, even if only for a few hours. We had a good time laughing and talking and planning more things to do together in life.
I think that's what had been missing for awhile. I had gotten so bogged down by all the changes in life--the extended time off work, the inability to attend church regularly, shifting friendships...all of it felt too overwhelming and left me feeling a little hopeless. As I watched friends expand their families with the addition of babies, it stung a little. Hearing about people's plans to just pack up and go on a trip without much deliberation made me jealous. I felt like a lot of the things that I had imagined doing in my life were fading away very quickly.
Last night Brad and I made a pact to get passports. Not only to get them, but to use them. Looking forward to something like that gives me a surge of hope that I haven't felt in awhile. Don't get me wrong, God has blessed me with so many things, many of which I'm ashamed to say I've grumbled about or argued that they weren't enough. I'm seeing quite clearly now that the Lord gives, and the Lord takes away. Blessed be his name. Whatever God has planned for my life is undoubtedly taking place in order to bring honor and glory to himself.
I don't know how long I'll be here, but I have a round of PFTs to do this afternoon some time. Tonight they'll probably be adding fortaz to my list of meds. I'm already on colymycin, merrem, and levaquin, so I'm a little apprehensive about adding one more to the mix. However, as my mom said today "it's amazing what all those gallons of IVs can do". Gallons is right. I'm starting to feel a little bit like I'm some crazy engineering project.
If the PFTs haven't improved enough to satisfy the doc, we're going to try some prednisone. I hate it, but if that's what it takes, then I'm open to it. The doc assured me that it would be a short course and would taper down, as opposed to the extremely high doses that I was on a few years back.
Like I said, all in all I'm doing okay. I'm sleeping fine, I'm eating well, and there are no signs of a bowel obstruction this time. We just need to wipe out this infection, and I should finally be back on track.
--Jonathan Edwards
I was admitted last Friday afternoon, and I don't expect to get out before next week. So far things are going pretty well. I think a lot of it has to do with the fact that I'm not stuck in here during a season of major holidays. Of course, yesterday was Valentine's Day, but Brad and I aren't in the habit of making a big deal of that. We did enjoy a nice take-out dinner for a "date". It was nice to be disconnected from the IV, even if only for a few hours. We had a good time laughing and talking and planning more things to do together in life.
I think that's what had been missing for awhile. I had gotten so bogged down by all the changes in life--the extended time off work, the inability to attend church regularly, shifting friendships...all of it felt too overwhelming and left me feeling a little hopeless. As I watched friends expand their families with the addition of babies, it stung a little. Hearing about people's plans to just pack up and go on a trip without much deliberation made me jealous. I felt like a lot of the things that I had imagined doing in my life were fading away very quickly.
Last night Brad and I made a pact to get passports. Not only to get them, but to use them. Looking forward to something like that gives me a surge of hope that I haven't felt in awhile. Don't get me wrong, God has blessed me with so many things, many of which I'm ashamed to say I've grumbled about or argued that they weren't enough. I'm seeing quite clearly now that the Lord gives, and the Lord takes away. Blessed be his name. Whatever God has planned for my life is undoubtedly taking place in order to bring honor and glory to himself.
I don't know how long I'll be here, but I have a round of PFTs to do this afternoon some time. Tonight they'll probably be adding fortaz to my list of meds. I'm already on colymycin, merrem, and levaquin, so I'm a little apprehensive about adding one more to the mix. However, as my mom said today "it's amazing what all those gallons of IVs can do". Gallons is right. I'm starting to feel a little bit like I'm some crazy engineering project.
If the PFTs haven't improved enough to satisfy the doc, we're going to try some prednisone. I hate it, but if that's what it takes, then I'm open to it. The doc assured me that it would be a short course and would taper down, as opposed to the extremely high doses that I was on a few years back.
Like I said, all in all I'm doing okay. I'm sleeping fine, I'm eating well, and there are no signs of a bowel obstruction this time. We just need to wipe out this infection, and I should finally be back on track.
Wednesday, February 07, 2007
10 Ways to Tell if You Have CF
1. Your home is in the path of a natural disaster and instead of packing the family Bible, your wedding album or your keepsakes, you pack a lunch.
2. You have more pills in your coin-purse than coins
3. Your bra size is a 38AAA
4. You eat more than the rest of your combined family members
5. Your call your doctor more than you call your best friend. In fact, he's on speed-dial.
6. You refer to phlegm wads as "lung oysters"
7. You've mastered the art of showering with a portion of your torso encased in plastic wrap
8. A bathroom scene in a gross-out movie does not even come CLOSE to what you can "doo"
9. You've spent your 401k on hospital bills and medications and you're not even 30
10. A "tune up" happens to you more often than it does your car
2. You have more pills in your coin-purse than coins
3. Your bra size is a 38AAA
4. You eat more than the rest of your combined family members
5. Your call your doctor more than you call your best friend. In fact, he's on speed-dial.
6. You refer to phlegm wads as "lung oysters"
7. You've mastered the art of showering with a portion of your torso encased in plastic wrap
8. A bathroom scene in a gross-out movie does not even come CLOSE to what you can "doo"
9. You've spent your 401k on hospital bills and medications and you're not even 30
10. A "tune up" happens to you more often than it does your car
Don't Lock Me Up Just Yet!
The eating was one of the most horrible things. Excepting the first two days after I entered the asylum, there was no salt for the food.
--Nellie Bly
Today's quote is from a woman I very much admire for many reasons, not the least of which is her prowess as a woman journalist (Katie Couric be da**ed) and her heart for the less fortunate. Although "Nellie Bly" is a nom de plume, Elizabeth Jane Cochran is perhaps best known for her undercover report of the abuse occurring at Blackwell's Island, an insane asylum. From my own experience with certain members of the health care community, I'm afraid that there is still something greatly amiss in how people with mental disorders are treated and how mental illness is perceived in general.
More on that on a different day. I'm still too spittin' mad about it to write anything decent.
In the meantime, here are my latest additions to Helium.
Ways to Reduce Reuse and Recycle Paper
Good News for Chocolate Lovers
Tips for Maintaining Healthy Teeth
More on that on a different day. I'm still too spittin' mad about it to write anything decent.
In the meantime, here are my latest additions to Helium.
Ways to Reduce Reuse and Recycle Paper
Good News for Chocolate Lovers
Tips for Maintaining Healthy Teeth
Tuesday, February 06, 2007
Getting Back on Track
There are good and bad times, but our mood changes more often than our fortune.
--Thomas Carlyle
I haven't updated in awhile again, mostly because I haven't quite felt my best. My doctor appointment last week revealed that my PFTs have dropped again (below 60%, ugh) and my weight is still wimpy. I also seem to be working on a lovely little sinus infection, which explains the headaches and the melodious whistling of my nose. I'm on a nice hefty dose of Levaquin for the infection, and I think it's already making a difference.
It's very strange to me that my FEV1 is down, especially since I'm still able to play my horn. I guess I must have trained myself over the years to direct that air flow in such a specific way as to produce sound in spite of overall lung volume. *shrug* Who knows. At any rate, I'm quite certain that if it hadn't been for the horn playing, my lungs would have been far worse than they are. The doc also recommended that I do some cardio to help my lung function.
My mom and I went out yesterday to price some treadmills, but they all looked so huge and cumbersome--even the "under the bed" models. I tried to envision myself folding and unfolding such a thing, and the mental image I got was that of Cousin Ernie Ford being folded up in the rollaway bed in an "I Love Lucy" episode. I barely have enough weight on me to keep a movie theatre seat down, so the folding athletic equipment was a bit frightening! Our efforts were not unfruitful, however. We found an exceptionally well-discounted (albeit all assembly required) rowing machine type thing. It's a nice size for me, and has tension bands that can be used to adjust the resistance. It works arms and legs, which is cool. The instructional video is horribly outdated. Brad says the woman on it has a patronizing tone, but I say it's a soothing one.
Yesterday we finally got the Honda fixed up too. New radiator, fixed the oil leak, replaced a cracked something or other, and put the hoodad in the wikiwiki. Good thing that didn't cost much because today on my way to caffeinate myself, the front passenger tire blew out on the Prius. We're not talking about a little puncture wound that could be fixed with fix-a-flat. We're talking instant "Ka-POW, what-the-jalapeno just happened to my car?" flat. God was merciful and I was 1/8 of a mile away from Firestone Tires.
So, that's the extent of my life yesterday and today, and a little from last week. I'll try to do better with the updates now that I'm feeling a bit more spry. In the meantime, I'll be snarfing down snacks as I try desperately to gain some weight. I keep you posted on the cardio too! I'm sure that as I build up some tone in my muscles that will put on weight as well.
It's very strange to me that my FEV1 is down, especially since I'm still able to play my horn. I guess I must have trained myself over the years to direct that air flow in such a specific way as to produce sound in spite of overall lung volume. *shrug* Who knows. At any rate, I'm quite certain that if it hadn't been for the horn playing, my lungs would have been far worse than they are. The doc also recommended that I do some cardio to help my lung function.
My mom and I went out yesterday to price some treadmills, but they all looked so huge and cumbersome--even the "under the bed" models. I tried to envision myself folding and unfolding such a thing, and the mental image I got was that of Cousin Ernie Ford being folded up in the rollaway bed in an "I Love Lucy" episode. I barely have enough weight on me to keep a movie theatre seat down, so the folding athletic equipment was a bit frightening! Our efforts were not unfruitful, however. We found an exceptionally well-discounted (albeit all assembly required) rowing machine type thing. It's a nice size for me, and has tension bands that can be used to adjust the resistance. It works arms and legs, which is cool. The instructional video is horribly outdated. Brad says the woman on it has a patronizing tone, but I say it's a soothing one.
Yesterday we finally got the Honda fixed up too. New radiator, fixed the oil leak, replaced a cracked something or other, and put the hoodad in the wikiwiki. Good thing that didn't cost much because today on my way to caffeinate myself, the front passenger tire blew out on the Prius. We're not talking about a little puncture wound that could be fixed with fix-a-flat. We're talking instant "Ka-POW, what-the-jalapeno just happened to my car?" flat. God was merciful and I was 1/8 of a mile away from Firestone Tires.
So, that's the extent of my life yesterday and today, and a little from last week. I'll try to do better with the updates now that I'm feeling a bit more spry. In the meantime, I'll be snarfing down snacks as I try desperately to gain some weight. I keep you posted on the cardio too! I'm sure that as I build up some tone in my muscles that will put on weight as well.
