Tuesday, April 13, 2010

Knitting :)

When you sit at home all day, unable to work, and your only vehicle with your husband at work, you have a little time on your hands.

So you knit :)

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Also through knitting groups, I've found fantastic friends here in Vegas... which is so helpful to my mental health. Moving from the area where you've lived your entire life, where you can the into the grocery store and see your cousin, or wave a pedestrian across the street and notice it's a kid you used to babysit, or even somewhere that your Dad's boss is a kid you graduated with. Vegas, I seriously knew no one... so meeting these wonderful women, who also share a fiber obsession has been a huge help!

Saturday, April 3, 2010

Eva

It's taken me a few days to be able to even write anything. To even process.

The weight of you being gone, it just sucked the air out of me.

A glance at my piano. The piano that I played the sheet music on that you bought me while you sang, when those lungs were giving you the life that you always dreamed of.

The pile of red yarn sitting next to my bed, destined to be designed into a shawl to remember you, tiny beads of rouge and silver, glass roses, red of course, to play along the edges.

The lessons you taught me, the ones that you said that I taught you, even though I can't hardly imagine that I could have anything to offer you. I always was amazed that you picked me, chose me, in all my broken and selfish and me ways, that you picked little ol' me to be part of that special group. It's strange looking up to someone who is younger than you, though that looking up was always literal, you made me feel like I should launch into a rousing rendition of "Lolly Pop Guild".

I may appear to a lot of people to be fairly fearless. You saw right through that. Saw all the walls that I put up around my insecurities. That I don't live in fear, but I don't live vibrantly, because if I don't, then I don't have much to be scared of. You're one of the few people that ever saw it, that ever had the words to tell me to buck up. You told me, as my health began to slip, to never be afraid of living. To not give in to the fact that I was sick and to crawl into a hole. That I still needed to live, vibrantly. Lord knows that I try. It's scary. Unbelievably so. You had a way of pushing me, to say what I was scared to say, because I didn't want people to know what I really felt. I don't know how, but you were able to do that. And I know I pushed you sometimes. When I saw a bit of me reflected in you.

Though I don't talk a lot about my faith on here, it's a theme in my life. One that you latched on to. You told me that I helped you find God. It gives me a lot of comfort right now. I rarely proclaim my Christianity, because I'm often judged to be a poor Christian, because I don't go to church, I'm a proud liberal, who is pro choice, pro same sex marriage, and I cuss like a sailor. I'm not perfect. But I do believe in God, and I do believe in Heaven, and I've had experiences that make my faith rock solid. That this girl, who has been told by a few too many Christians that her faith is not worthy because of her beliefs, helped someone believe, by living a quiet believing life. That's a part of God's great miracle.

That's the thing about us. Though we grew up miles apart, in different countries, there was so much that I could see in you, that I felt in me. Not that I could ever be as loving as you. That takes something, a gift that I wasn't quite born with. But yet, we both always tried to see the best in people, the best in situations, even though it sometimes takes me a bit do so, once I dealt with my demons. The same demon that haunted you at the end. Fear. But love was able to calm the demon.

So to you, for you, my Eva, I will try. I will try to be as honest with myself, and my readers, and my friends, and my family, and everything, that I can be. Because that is what you wanted from me.

Dance for me sweet girl. Until we can run, and dance, and play together, never once gasping for breath.

Wednesday, March 24, 2010

I have a lot of little news bits...

*started on night time oxygen, and I'm loving it

*changed enzymes to zenpep, hoping this will address some issures

*I have a cold of doom

*I'll be in Boston April 30th-May 3rd

Monday, March 22, 2010

Silly Canada

When I was a very little girl, I thought that since both Heaven and Washington were up, that clearly, when I looked at the sky, I was looking at the bottom of Washington, and the people in Washington were looking at the bottom of Heaven. Imagine my surprise when I learned that Canada was above Washington, and up meant nothing on a sphere.

Wednesday, February 24, 2010

The Elephant in the Room

A CF mom blog broke my heart today. The comments in it broke my heart further. Moms who plan on not telling their young CF kids that CF is fatal. Their reasoning is that it some how lessens the fight, or makes it more difficult. And my heart breaks in a million pieces for these kids. Because like it or not, CF is fatal. And that isn't stopped by positive thoughts and rainbows. Truth, reality, facts, they don't change the fight for a cure, the fight to live. They only make the urge to fight stronger, the will to live even more passionate, because the chance of dying is brought into focus. The following is an excerpt from my comments on the blog, and replying to a mom saying that being realistic makes their fight harder, something that totally baffles me, since we are ALL IN THE SAME FIGHT.

In reply to the blog:

This may seem unwanted, or out of line, but I beg you to not conceal from G that CF may kill him. I'm unclear if you would do so or not by not telling him it's fatal... but I know a number of cystics who had a VERY rough time because their parents didn't tell them that CF was fatal. That learned from playground teasing, or an encyclopedia, or a news article. A pretty devastating way to learn, that really damaged some people, and ruined the trust bond amongst many children and their parents. The new therapies on the horizon are very promising, but it remains that CF will kill, eventually. Parents who didn't tell their now older children thought very much like you that CF would be beaten before it became an issue, and it very well may be, but it very well may not be.

Vertex is the greatest hope in a long time, but it is still not a cure, and it's unknown what the long term battle with CF will look like with it.

Yes, CF sucks. Yes, we need to fight. But hiding the truth, as it now stands, about CF, doesn't make you, or G, or any cystic, any less of a fighter.

And in reply to the comment that said I was making the fight harder:

I'm sorry that you feel that being realistic makes your fight harder. That somehow we are on different sides in facing the same monster. My heart breaks a little for your young CFer... as it does every time that I hear a fellow cystic being withheld information about the monster that lives within them.

I was raised by parents who felt that the most effective way to help me deal with CF, and all of its realities, is to NEVER hide anything about CF. To never shy away from the fact that its possibility of killing me was very high. And I can't thank them enough for that. From the time I was very little, I could ask any question I wanted to about CF, and know that it would be answered truthfully.

I was maybe four or five when I started asking about my future. About maybe what CF meant in that. Very, very young to start asking those questions. And my parents had a choice. Hold on to hope that CF would be cured before my mortality came into question, let me know that the monster within may very well kill me. Sure, this was the mid 1980s, and the lifespan prognosis for CF was very different, but the ultimate outcome was not. This was the time they were finding the gene, and proclaiming that a cure was 5 years away, 10 at most. Surely their very healthy child, who yet needed so much as a nebulizer or a hospital stay could hold on for that long. Surely they wouldn't need to let their preschooler know that she lived with a ticking time bomb. But they did. And I praise them for that. They let me know that CF was very serious, and it was a very real possibility that someday I may get very sick, and that someday CF very well may kill me.

I know. No parent would ever want that conversation. I don't really remember any of this talk. But I do remember always knowing that CF may mean a shortened life. That keeping healthy, going to the doctor, and fighting for a cure were all ways that I could look this fact in the face. It made every treatment, every doctor's visit, and every day worth more, because I knew how vitally important they were.

When I was eight, I learned that a friend, my age, had died of CF. The reality of what death, CF, and everything came crashing in. It was a VERY rough time, but something that I came out the other side much stronger... because my parents were willing to be there, talk about mortality, and acknowledge that there was no way to know what mine, or anyone's future may bring. I emerged from this rough patch a short time later, willing to do all I could to fight... and knowing what was at stake if I didn't. I didn't have to experience years of being unsettled about not knowing why I did my treatments, like some friends whose parents not only hid fatality, but the very existence of CF from their kids. I didn't have to feel like I couldn't trust my parents because they hid something so vital, as far too many people I know did because they found out on their own what CF meant. I didn't have to be shocked by another kid proclaiming "My mom says CF will kill you", as a sickening number of cystics have over the years.

Not admitting that CF is a deadly disease does not change the fact that kids, young kids, kids who are not even teenagers, still die of it today. It's not as common, but it still happens. It does not change that there is not a cure, it does not change that a life is irrevocably altered by CF. Understanding fatality does not decrease the fight, does not make life less lived, and does not end all hope. In my mind it increases all of those things a million times, because all cards are on the table.

ETA: I find it a pretty sad commentary that this CF mom blocked me from following her site. It won't start me from voicing my opinion and the damage that has occurred from not being very frank about the realities of CF.

Wednesday, January 27, 2010

Ginger

Today Ginger was supposed to turn 29. Instead, her young son and devoted husband spend their first January 27th without her.

By all measures, Ginger was healthier than I was. Higher lung function, better weight, and less harmful bacteria. We chatted often at http://www.cf2chat.com and I loved her humor and light. On my list of things to do while visiting the inlaws in South Carolina was to meet Ginger.

Then she got the swine flu...

and it was too great of a challenge for her CF lungs. Her death really shook me. It was one in a string of deaths this fall, but her decline was so quick, so head-spinning quick, that it really felt like it came completely out of nowhere, even though she did struggle for quite awhile.

On another note, it's quickly approaching a year since Jenn died. A year since I talked to my wonderful, beautiful, amazing friend. We may have never met in person, but I still count her amongst my closest of friends, and I know that she would do the same for me. The pain of her not being her is not as sharp. Slowly I'm able to feel more like the old Talana. It's hard for me to reconcile how deeply these people I've never met, affect me, my soul, and truly add to my life.

Wednesday, January 13, 2010

New Clinic

I had my first visit today with the Las Vegas clinic... something major for me, since I've never seen anyone for my CF except for the doctors at OHSU. First impressions? I'm in good hands. It was a long visit, but I talked to the nutritionist, social worker, nurse, RT, and doctor.

The waiting room was a little scary... the clinic is located near where Vegas starts to turn scary... the area that any large city has. My Portland clinic is far from this area, and Eugene isn't big enough for an area like that, so it was a change to be sure... but once back in the clinic (though I do have to say the check in people were very nice), it was made of awesome.

I was called back into the clinic area, when I got the good ol weight... still sucky... 104 lbs, leaving me with a BMI a hair over 18. My o2 sat (the amount of blood cells that are saturated with oxygen) was 96%, which was surprisingly good for being at the higher elevation of Vegas and with as coughy as I've been lately.

Then I talked through my CF with the nurse... then time for my PFTs. Given how junky my lungs have been, I didn't hold out much hope. Yet, I saw the best numbers I've seen since May, and the third highest I've had in 2+ years. WOOO HOOO! Even though this clinic uses a different predictor model, even my raw numbers were up. Hello FEV1 of 38%.

Then more meeting of people, more talking, more seeing where we needed to go. They were encouraged that I am seemingly stable. Concerned about my problems with malaborbtion, despite being on a very high enzyme dose. So, to address it, I'm trying one week on the newest enzyme, Zenpep, to see if it makes a difference. I'm also going on a course of cipro to address some low lying infection issues, as well as trying singular for SOB issues.

Also on tap is getting my yearly bone scan and doing yet another night time o2 study to see if I need it!

Saturday, January 9, 2010

You may think less of me, but this is what I think...

My friend Sarah, posted a link to this blog written by a breast cancer survivor about the recent meme that has swept through facebook. The one where women post their bra color in the name of cancer awareness. I participated (bright blue byt the way), but like many things on facebook that are the definition of "flash in a pan", I didn't really think that it would raise much awareness about breast cancer. But, of course, with anything, people are sensitive to it.

The blogger wrote about feeling left out from this meme, that was to raise awareness about her own disease. How it's insensitive to those that have lost their breasts to cancer, because they have no bra to wear. How life is radically changed for them because of the lack of boobs. Part of me feels for them, but a even louder part of me says "Boohoo". Why this shocking lack of compassion, from me? Because I would give up my hair, my breasts, even a leg to have a chance at being cured. But it's not that simple with CF. You can live without boobs. You can live without hair, get by without legs. You can't live without lungs.

Yes, cancer is tough. Chemo, radiation, surgery, and a radical jump from normal life into the world of the sick. You are guaranteed nothing about the outcome, only sure that the journey will be twisty. It's the path that I and all my CF friends walk every day... however, we all know where our journey's outcome will be... death by CF if something else doesn't get us first. Even with secondary cancers, a loss of normal functionality, and a number of other complications, it's not all or nothing with cancer.

Then as these thoughts, these emotions of "I would kill to be able to walk your journey for a cure", I feel horrible for lessening the suffering of another human being. For thinking that they just need to get over their lack of boobs because they are alive. Guess what, clothes don't fit? Oh well, you are alive to wear those clothes! Get funny looks in public because you don't fill out your top, or your hair is only an inch long after chemo... you know why, and you can be proud that you can be out in public. I'm not saying that the blogger in question, or any cancer survivor that is alive isn't absolutely grateful to be alive, but complaints about cosmetic issues that are the sole reason that they are alive really, really hurts me. Because I can't go down and have a body part removed to be healthy. Right now, I'm locked into a life that I will slowly get sicker and sicker. Until I need a lung transplant... where I am waiting on someone else to die... so I can throw my own Hail Mary at life. One, just like any cancer surgery, does not have a guaranteed outcome. But unlike a cancer surviver who gets the label of "cure" after 5 years of no evidence of disease, a lung transplant patient has a 50% chance of being dead at 5 years. If you are alive, you still take handfuls of pills a day, still have to be afraid of every germ that comes your way, and get regular scans to see if the very drugs that are saving your life may have caused cancer. How's that for irony?

I want to shake myself and day "get over it Talana"... at the same time wanting to shake these women that are alive and say "get over it, you're alive"!

Or every year, during childhood cancer awareness, it is common for people to post that cancer kills more than a number of other diseases combined... CF being on that list. I want to vomit every time I read that. Vomit at kids being lost at a cruel killer... vomit at the fact that these kids have a chance at a cure, when CF kids don't, so why are we even equating them. That they deserve more awareness because there are more children dying of cancer? A child dying of anything is not okay. Saying that you deserve a cure because it kills more, at the cost of a list of other diseases? The logical part of me knows that probably isn't what they are saying... but the emotional knee-jerk side callously says "I'd take a child sick with cancer over one with a 100% death sentence." And then I vomit on myself a little for thinking that.

So maybe I should make my own meme... what color of mucus are you coughing up today... post the color in your status for CF awareness... (pea soup green), though it may be insensitive to my CF friends who have new lungs, who don't deal with mucus anymore, but still have CF, but hey, I don't think they'll care that much.

Wednesday, December 9, 2009

It's been awhile...

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

Thursday, November 12, 2009

Another moving box...

Less than a month until the big move!



- Posted using BlogPress from my iPhone

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.

4pm

Means wiggly cuddle time in Itsa's world.



- Posted using BlogPress from my iPhone

A confession

I have been terrible about my treatments lately.




Tuesday, November 10, 2009

Lizzie is my official neb and vest buddy. She will come running when she hears me start and will hide under my blanket, curl up on my lap, on snuggle beside me. I think she knows she has her "lady" sitting still for a long period of time.


- Posted using BlogPress from my iPhone

Thursday, November 5, 2009

Tonight will be quick, since I am already in bed. I do have to say that I really do have wonderful friends. I often struggle with the insecurity that no one really likes me. Nights like tonight show me differently.

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.

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,

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.


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!

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.

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.

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...

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By the time we were allowed in port, look how clear it was!

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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.

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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...

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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.

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I liked the message... basically along the lines of God, my mom, and you are my three loves.

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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.

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Even though this was not in a great area, I thought it was a really cool hotel.

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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...

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Then we got back on the bus... we headed towards the craft market, winding through some areas of Lima that are more tourist friendly.

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Reading... while driving...

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Soccer stadium...

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Craft market...

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Scenes around the boat after we got back.

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When we got back to our room, we noticed we had a "friend" on our balcony.

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And our towel animal...

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