a hard while.
Several friends have died of CF. Close friends... ones that I'm not sure I am even ready to process their passing, and am frightened about my own well being... one was even healthier than me... before she came down with H1N1. Each deserve their own words, when I am ready... and tonight I am ready to give words to Paul Mooney, lovingly known as Q.
Q helped me earn back confidence as a writer. As somebody who actually knew the English language. In college, I has a professor who basically destroyed any confidence I had in writing and a good chunk of my self worth.
Q, as the gifted writer that we know him to be, helped me rediscover the writer that I was before that professor. The girl, who while may not always have pitch perfect grammar and spelling, is able to turn a phrase in an unexpected way, bring home a point, and find a unique voice among common words.
The fact that Q, as this gifted writer, and a professor in his own right, valued and sought out my opinion about issues related to writing... I don't have the words to really express what that meant to me.
Thank you Q, for making me feel like I had some worth... I may even be able to finish that book, in your hono
Wednesday, December 9, 2009
Thursday, November 12, 2009
Wednesday, November 11, 2009
Please pray for my Eva tonight... she's in the hospital, not able to breathe... she needs new lungs. 2 year post transplant they are failing her. This girl means the world to me... below is Jess, Eva, and I at the Vancouver premier of the documentary about her transplant 65_Red Roses.
Tuesday, November 10, 2009
Thursday, November 5, 2009
CF Sucks
Already this month we've lost two in the CF community... two... and we're barely 5 days in.
Will's journey is one that I've been following for some time. He desperately needed lungs and received them over a year ago. Sadly, his body never really took well to them. He spent months on the vent, clinging to life, lost most of his sight, and also had severe kidney damage in the process. But rather than quitting, he kept fighting. He made it off that vent. He made it home. He made it to basketball games, his love, and he got to cuddle his sweet niece. And then today, he's gone. Nothing was easy for him, but I've learned so much through is blog about living to the best that you can with what you have. Will showed that tenfold.
Lauren was someone who was very involved in the CF forums, using her voice to offer encouragement, faith, and knowledge to other cystics. Her and her husband were an amazing example of a relationship that worked with all of the hassles of CF.
There are also so many that are so desperately sick right now that need prayers. One of my dear chat friends is on the vent, another is in the hospital with high fevers, and so many others are struggling with complications... it just freaking sucks.
Will's journey is one that I've been following for some time. He desperately needed lungs and received them over a year ago. Sadly, his body never really took well to them. He spent months on the vent, clinging to life, lost most of his sight, and also had severe kidney damage in the process. But rather than quitting, he kept fighting. He made it off that vent. He made it home. He made it to basketball games, his love, and he got to cuddle his sweet niece. And then today, he's gone. Nothing was easy for him, but I've learned so much through is blog about living to the best that you can with what you have. Will showed that tenfold.
Lauren was someone who was very involved in the CF forums, using her voice to offer encouragement, faith, and knowledge to other cystics. Her and her husband were an amazing example of a relationship that worked with all of the hassles of CF.
There are also so many that are so desperately sick right now that need prayers. One of my dear chat friends is on the vent, another is in the hospital with high fevers, and so many others are struggling with complications... it just freaking sucks.
Wednesday, November 4, 2009
H1N1 Shot!
So I missed yesterday... I chose to believe that the 3rd of November never existed.
Today, I had an adventure... I went to my local H1N1 shot clinic!
The county health department was offering shots for high risk groups at local schools this week. Knowing that we have MANY CFers very sick with H1N1 and some that have even lost their battle, I really wanted to get my shot ASAP. The clinic at the high school a mile down the road was open from 2-5. I showed up at noon... and was already about 70 people back in line.
I took my seat, between two parents getting shots for their asthmatic kids. I sat, played on my iphone, knitted (to which I was asked if I was doing needlepoint, ah men), and talked some with those around me.
Then some county health officials went down the line and asked why you needed the shot and handed out consent forms, based on if you were in the nasal mist category or the shot category. Cystics are the shot category, since even the weakened virus is not good for us.
I was hoping that if I had paperwork in hand, then I would be guaranteed a shot... but the county had a big debacle early this week because the city they were in gave out tickets, which the county didn't offer and they had people fighting over vaccine, so I took nothing for granted.
At a little after 2, after 2 hours in line, the line started moving forward. Those at the back of the line were turned away because they didn't have enough vaccine, as shown by they didn't have any more forms. Hope went up in me that I would get my shot.
Then slowly, slowly, slowly the line moved forward... finally I could see where they were giving the shot. I had to stand for forty five minutes, waiting for the backlog of people in front of me to clear, then I got screened again. Then in the line of screened people. We all were chatty here, where one old man gave me a line I think all us cystics should bother... "I have lungs like a parakeet!" It's so true... after a bit of chatting, then waiting... I GOT MY SHOT!
I'm proud to report I have not oinked yet.
So four hours,
Today, I had an adventure... I went to my local H1N1 shot clinic!
The county health department was offering shots for high risk groups at local schools this week. Knowing that we have MANY CFers very sick with H1N1 and some that have even lost their battle, I really wanted to get my shot ASAP. The clinic at the high school a mile down the road was open from 2-5. I showed up at noon... and was already about 70 people back in line.
I took my seat, between two parents getting shots for their asthmatic kids. I sat, played on my iphone, knitted (to which I was asked if I was doing needlepoint, ah men), and talked some with those around me.
Then some county health officials went down the line and asked why you needed the shot and handed out consent forms, based on if you were in the nasal mist category or the shot category. Cystics are the shot category, since even the weakened virus is not good for us.
I was hoping that if I had paperwork in hand, then I would be guaranteed a shot... but the county had a big debacle early this week because the city they were in gave out tickets, which the county didn't offer and they had people fighting over vaccine, so I took nothing for granted.
At a little after 2, after 2 hours in line, the line started moving forward. Those at the back of the line were turned away because they didn't have enough vaccine, as shown by they didn't have any more forms. Hope went up in me that I would get my shot.
Then slowly, slowly, slowly the line moved forward... finally I could see where they were giving the shot. I had to stand for forty five minutes, waiting for the backlog of people in front of me to clear, then I got screened again. Then in the line of screened people. We all were chatty here, where one old man gave me a line I think all us cystics should bother... "I have lungs like a parakeet!" It's so true... after a bit of chatting, then waiting... I GOT MY SHOT!
I'm proud to report I have not oinked yet.
So four hours,
Monday, November 2, 2009
New Kitten
One of the many things to happen during my neglect of the blog was finding a new and wonderful little kitten!
Our house backs up on a small green way that is a city park. We noticed this summer that a very small kitten was coming out of the park into our backyard. She was terrified of us, but also very curious about us humans, and would sometimes show off, playfully flirting from the safe distance of 20 feet away, then 15 feet, then 10. Through about three weeks, she slowly trusted being around us more, until she was coming up on our porch to eat the dry food we provided. Matt worked very hard with her to gain her trust, and slowly but surely, we finally were able to touch her. Around this time, she started limping very badly... and a pack of raccoons was stalking our porch at night, so we scooped her up and brought her inside. To say that she loves her new life would be an understatement. She loves cuddling with us, playing fetch, and just living life. She has an endless fascination with human food, and is unafraid to try any new taste... going as far as trying to steal white chocolate from my purse, popcorn from my bowl, and cheetos from the bag... all of which rank high on her list of best foods in the world.
Our house backs up on a small green way that is a city park. We noticed this summer that a very small kitten was coming out of the park into our backyard. She was terrified of us, but also very curious about us humans, and would sometimes show off, playfully flirting from the safe distance of 20 feet away, then 15 feet, then 10. Through about three weeks, she slowly trusted being around us more, until she was coming up on our porch to eat the dry food we provided. Matt worked very hard with her to gain her trust, and slowly but surely, we finally were able to touch her. Around this time, she started limping very badly... and a pack of raccoons was stalking our porch at night, so we scooped her up and brought her inside. To say that she loves her new life would be an understatement. She loves cuddling with us, playing fetch, and just living life. She has an endless fascination with human food, and is unafraid to try any new taste... going as far as trying to steal white chocolate from my purse, popcorn from my bowl, and cheetos from the bag... all of which rank high on her list of best foods in the world.
Sunday, November 1, 2009
Lots to talk about...
More in the morning, but count this as 1/30 in my attempt to blog a little every day of November....
Wednesday, October 7, 2009
It's been forever!!!
First off, United drama has been resolved. I'm not 100% happy with the solution, but at least they did something, which is better than nothing. Basically they technically did not break the law, but realize I was very upset about how I was treated and gave Matt and I each $150 towards future travel. Getting the baggage overcharge on our return flight was VERY difficult, and involved over 2 hours on the phone for me, 4 phone calls, multiple failed promises of a supervisor calling me back, then them offering me less money than they owed. Finally they resolved it as a "one time thing" which is idiotic when it was THEIR system that failed...
Anyway, I digress....
And leave with a huge teaser in news....
Come December, I will be leaving my beloved Oregon, and will be moving to Vegas, following my husband's job....
More later, because I need a reason to blog!
First off, United drama has been resolved. I'm not 100% happy with the solution, but at least they did something, which is better than nothing. Basically they technically did not break the law, but realize I was very upset about how I was treated and gave Matt and I each $150 towards future travel. Getting the baggage overcharge on our return flight was VERY difficult, and involved over 2 hours on the phone for me, 4 phone calls, multiple failed promises of a supervisor calling me back, then them offering me less money than they owed. Finally they resolved it as a "one time thing" which is idiotic when it was THEIR system that failed...
Anyway, I digress....
And leave with a huge teaser in news....
Come December, I will be leaving my beloved Oregon, and will be moving to Vegas, following my husband's job....
More later, because I need a reason to blog!
Monday, September 7, 2009
More United Drama
So I am yet to hear back from United... but they added to their problems with our return flight home. Safe to say they will be getting an earful from me tomorrow, and if they choose to not act, I will be going to the media.
So, for our return flight, we decided to just check our bags, as we really didn't feel like dealing with drama. We were both tired, stressed, and since we already asked for a total of $80 to be refunded, we figured we'd check. I used United's online check in portal at the business center of the hotel. With two checked bags, one for each my husband and me, the charge was $22. Why this is cheaper than the airport is beyond me, as it is the same amount of work on their side, but they'll do anything to get a dime off someone after it's too late to go the cheaper route. We use the credit card to pay the charge that is on the screen of $22. Then I look at the receipt that printed out... one bag for my husband... three bags for me... total of $168!!!!! I never said I had 3 bags, and I was displayed a charge of $22. Luckily the money is in the account, still, this holds up some of our money when it shouldn't be. We brought our issue to the ticket counter at SFO, where we were informed that they cannot issue refunds at the airport and I needed to call their refund line... which is closed for the holiday weekend. The ticket agent made it sound like the process should be easy, but since the receipt clearly states that "baggage fees are non-refundable", I doubt it will be easy.
Also Ted misquoted the amount that we would be charged for our bags. While he said we was charging us $20 for each bag, for a total of $40, something he confirmed when he handed us the receipt, they were really $15 each for a charge of $30. This was because we bought our tickets before May 14th according to United's website. Ted did not lie to us per say, but I really feel uncomfortable that he didn't know what he charged us, and didn't pay attention enough to know it was a different amount and let us know. He could have told us that the charge was different, but didn't. What if it was higher instead of lower? Would we have had no idea?
Tomorrow I will be contacting United. We'll see if they decide to atone for their mistakes or force me to go to the media.
So, for our return flight, we decided to just check our bags, as we really didn't feel like dealing with drama. We were both tired, stressed, and since we already asked for a total of $80 to be refunded, we figured we'd check. I used United's online check in portal at the business center of the hotel. With two checked bags, one for each my husband and me, the charge was $22. Why this is cheaper than the airport is beyond me, as it is the same amount of work on their side, but they'll do anything to get a dime off someone after it's too late to go the cheaper route. We use the credit card to pay the charge that is on the screen of $22. Then I look at the receipt that printed out... one bag for my husband... three bags for me... total of $168!!!!! I never said I had 3 bags, and I was displayed a charge of $22. Luckily the money is in the account, still, this holds up some of our money when it shouldn't be. We brought our issue to the ticket counter at SFO, where we were informed that they cannot issue refunds at the airport and I needed to call their refund line... which is closed for the holiday weekend. The ticket agent made it sound like the process should be easy, but since the receipt clearly states that "baggage fees are non-refundable", I doubt it will be easy.
Also Ted misquoted the amount that we would be charged for our bags. While he said we was charging us $20 for each bag, for a total of $40, something he confirmed when he handed us the receipt, they were really $15 each for a charge of $30. This was because we bought our tickets before May 14th according to United's website. Ted did not lie to us per say, but I really feel uncomfortable that he didn't know what he charged us, and didn't pay attention enough to know it was a different amount and let us know. He could have told us that the charge was different, but didn't. What if it was higher instead of lower? Would we have had no idea?
Tomorrow I will be contacting United. We'll see if they decide to atone for their mistakes or force me to go to the media.
Wednesday, September 2, 2009
I know I haven't blogged in forever...
but I felt I needed to make public the treatment from United Airlines today. The following is the email I sent to their customer service department. If I do not hear back soon, well... I think I make it clear in my email.
I am writing to complain about the treatment I received by your agents before I even boarded the plane. I fly frequently, but have never been forced to pay for having medical issues. Today and your airline marks the first time.
I was born with Cystic Fibrosis, a medical condition that requires me to follow an intensive medical regimine. To go on a five day trip, like I did today, I have to carry several bottles of pils to accommodate the fifty pills that I take a day. I carry a compressor, several nebulizers, and a small cooler for my inhaled medications. I also carry a large medical device, called a vest, that I must use twice a day. All of these items take up a significant amount of room. My vest alone is a large carryon item, one that I can not use for other items, medical or personal. This leaves me to use an additional carry on for all of my other medical items and, if I am only going away for a short time, my personal items as well.
My husband and I arrived at the Eugene airport with our bags. We have used these bags previously on United as a gate check and have never encountered a problem. In the past when the number and size of our bags has been questioned, a quick explination of my medical needs was all that was needed. This time proved very differently, and was the first time that I have ever seen my legal rights as a medically handicapped person infringed upon.
My husband and I were approached at the gate over the size of our bags. I explained that two of them included medical equipment, which is why I had them my possesion. The gate agent repeated that they were too large to carry on and they must be checked. I simply refuse to check medical equipment as a rule and am in my legal rights to do so. Upon further pushing, I conceded that the bags could be checked, but charging me to do so could be grounds for a disability lawsuit. The gate agent rudely informed me that I did not need to go to that point. I have never been rudely informed like that when standing up for my rights.
The gate agent called over her supervisor, Ted Dewey. Ted informed me that the bags must be checked because they included personal items. This brings up a number of issues. First, my bag would not be as large, without the medical equipment. Secondly, I have always had my first bag fee waived by other airlines that realize my medical equipment is what pushes me over. They are willing to accomodate me, and follow the laws set up to protect me. Ted was unwilling to do so. He offered to bring me a bag out of their storage for my medical equipment, but this was not a feasible solution for a number of reasons. First, I did not feel comfortable unpacking my bag in the terminal. It is carefully paked to protect my medical and personal items. Second, I would still have the large bag in question, now poorly packed lending my personal items to damage, and I would still have to pay the fee, as Ted informed me he didn't have to make any accomodation for my personal items. However, again, these personal items would not be an issue, if it were not for my medical equipment. Ted semmed oblivious to this issue. Thirdly, by being asked to unpack in the terminal, I felt as if I was being asked to prove my condition. When you don't look sick, people in authority often feel the need to have sickness proven to them.
My husband and I feel like we have been discriminated against. We know that the lack of accomodation is grounds for an ADA lawsuit. Not being litigous, we wish to avoid that, but are willing to take nescisary steps to ensure that we are compensated for our baggage fees, and the time it takes to reach a resolution on this issue. Fair compensation, at this time, would be a full refond of our baggage fees, which will total $80 after our return flight on Sunday. We are uninterested in vouchers for future travel, as we are unwilling to fly an airline that breaks laws to make a dime off of the disabled. Also, we may take our story to the media, as we feel that other people should be informed at how far United will go to make money. I was reminded at how greedy an airline could be when Ted informed me that accomodating a bag could lead to $100 price hikes, and I should feel lucky that I only was paying $20 a bag. Amazing how that doesn't add up, but little in this day did.
I am writing to complain about the treatment I received by your agents before I even boarded the plane. I fly frequently, but have never been forced to pay for having medical issues. Today and your airline marks the first time.
I was born with Cystic Fibrosis, a medical condition that requires me to follow an intensive medical regimine. To go on a five day trip, like I did today, I have to carry several bottles of pils to accommodate the fifty pills that I take a day. I carry a compressor, several nebulizers, and a small cooler for my inhaled medications. I also carry a large medical device, called a vest, that I must use twice a day. All of these items take up a significant amount of room. My vest alone is a large carryon item, one that I can not use for other items, medical or personal. This leaves me to use an additional carry on for all of my other medical items and, if I am only going away for a short time, my personal items as well.
My husband and I arrived at the Eugene airport with our bags. We have used these bags previously on United as a gate check and have never encountered a problem. In the past when the number and size of our bags has been questioned, a quick explination of my medical needs was all that was needed. This time proved very differently, and was the first time that I have ever seen my legal rights as a medically handicapped person infringed upon.
My husband and I were approached at the gate over the size of our bags. I explained that two of them included medical equipment, which is why I had them my possesion. The gate agent repeated that they were too large to carry on and they must be checked. I simply refuse to check medical equipment as a rule and am in my legal rights to do so. Upon further pushing, I conceded that the bags could be checked, but charging me to do so could be grounds for a disability lawsuit. The gate agent rudely informed me that I did not need to go to that point. I have never been rudely informed like that when standing up for my rights.
The gate agent called over her supervisor, Ted Dewey. Ted informed me that the bags must be checked because they included personal items. This brings up a number of issues. First, my bag would not be as large, without the medical equipment. Secondly, I have always had my first bag fee waived by other airlines that realize my medical equipment is what pushes me over. They are willing to accomodate me, and follow the laws set up to protect me. Ted was unwilling to do so. He offered to bring me a bag out of their storage for my medical equipment, but this was not a feasible solution for a number of reasons. First, I did not feel comfortable unpacking my bag in the terminal. It is carefully paked to protect my medical and personal items. Second, I would still have the large bag in question, now poorly packed lending my personal items to damage, and I would still have to pay the fee, as Ted informed me he didn't have to make any accomodation for my personal items. However, again, these personal items would not be an issue, if it were not for my medical equipment. Ted semmed oblivious to this issue. Thirdly, by being asked to unpack in the terminal, I felt as if I was being asked to prove my condition. When you don't look sick, people in authority often feel the need to have sickness proven to them.
My husband and I feel like we have been discriminated against. We know that the lack of accomodation is grounds for an ADA lawsuit. Not being litigous, we wish to avoid that, but are willing to take nescisary steps to ensure that we are compensated for our baggage fees, and the time it takes to reach a resolution on this issue. Fair compensation, at this time, would be a full refond of our baggage fees, which will total $80 after our return flight on Sunday. We are uninterested in vouchers for future travel, as we are unwilling to fly an airline that breaks laws to make a dime off of the disabled. Also, we may take our story to the media, as we feel that other people should be informed at how far United will go to make money. I was reminded at how greedy an airline could be when Ted informed me that accomodating a bag could lead to $100 price hikes, and I should feel lucky that I only was paying $20 a bag. Amazing how that doesn't add up, but little in this day did.
Monday, May 18, 2009
Peru!
More photos can be found - here
After two not so fun days at sea where Matt got very very sick... and needed on board medical intervention... and lots of time in bed... we arrived in Peru.
I noticed something was amiss when I woke up because we weren't docked... and there had not been an announcement of what deck we would be debarking from. Turns out, they thought we were a plague ship! Depending on who you listen too, the authorities thought we were coming from Mexico and were possibly infected with the swine flu. The other account is they needed to inspect everyone from Mexico for signs of the swine flu. Regardless... it took over an hour to clear us that we were able to dock and not infect the entire country. There was a media circus on the dock... and everyone had masks and gloves and such to protect themselves from us.
While we waited to see if we were allowed in the country, I took some shots of the fog that surrounded us...
By the time we were allowed in port, look how clear it was!
We then boarded a bus that took us from the port city of Callao, right next door to Lima. On the bus I saw some pretty interesting things...
First, the Eugene child in me was impressed by the number of bike paths... even divided from the main road.
I don't think I want to know why there is a fish in the back of that car... I just... no... I don't want to know... or smell...
The guy standing beside the car? He was selling soda. There has been more than once stuck in traffic I probably would have killed for someone to do that.
I liked the message... basically along the lines of God, my mom, and you are my three loves.
Did I mention that people in Lima don't know how to drive? Our entire trip was a 30 mph white knuckle journey of cars making up their own turn lanes... pulling out whenever they wanted... it was... wow.
Sadly most of the downtown area of Lima is very rundown. Hardly anyone lives there and the great old buildings are going to ruin.
Even though this was not in a great area, I thought it was a really cool hotel.
Our bus took us to the central square in Costa Rica. The main Catholic church for Lima was here along with the government building. Some shots from the square...
Then we got back on the bus... we headed towards the craft market, winding through some areas of Lima that are more tourist friendly.
Reading... while driving...
Soccer stadium...
Craft market...
Scenes around the boat after we got back.
When we got back to our room, we noticed we had a "friend" on our balcony.
And our towel animal...
After two not so fun days at sea where Matt got very very sick... and needed on board medical intervention... and lots of time in bed... we arrived in Peru.
I noticed something was amiss when I woke up because we weren't docked... and there had not been an announcement of what deck we would be debarking from. Turns out, they thought we were a plague ship! Depending on who you listen too, the authorities thought we were coming from Mexico and were possibly infected with the swine flu. The other account is they needed to inspect everyone from Mexico for signs of the swine flu. Regardless... it took over an hour to clear us that we were able to dock and not infect the entire country. There was a media circus on the dock... and everyone had masks and gloves and such to protect themselves from us.
While we waited to see if we were allowed in the country, I took some shots of the fog that surrounded us...
By the time we were allowed in port, look how clear it was!
We then boarded a bus that took us from the port city of Callao, right next door to Lima. On the bus I saw some pretty interesting things...
First, the Eugene child in me was impressed by the number of bike paths... even divided from the main road.
I don't think I want to know why there is a fish in the back of that car... I just... no... I don't want to know... or smell...
The guy standing beside the car? He was selling soda. There has been more than once stuck in traffic I probably would have killed for someone to do that.
I liked the message... basically along the lines of God, my mom, and you are my three loves.
Did I mention that people in Lima don't know how to drive? Our entire trip was a 30 mph white knuckle journey of cars making up their own turn lanes... pulling out whenever they wanted... it was... wow.
Sadly most of the downtown area of Lima is very rundown. Hardly anyone lives there and the great old buildings are going to ruin.
Even though this was not in a great area, I thought it was a really cool hotel.
Our bus took us to the central square in Costa Rica. The main Catholic church for Lima was here along with the government building. Some shots from the square...
Then we got back on the bus... we headed towards the craft market, winding through some areas of Lima that are more tourist friendly.
Reading... while driving...
Soccer stadium...
Craft market...
Scenes around the boat after we got back.
When we got back to our room, we noticed we had a "friend" on our balcony.
And our towel animal...
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