The boys are back!!!

My boys (well my sister's boys) are back in Maine!  

I will have them for a couple of weeks again and am excited about it... It's crazy that I still have not posted pictures from Oregon.. which I need to do... and I am now posting pics of my time with the boys... but here they are... a few pics to kick things off! 

SEVEN years??!!

Seven years ago I was enjoying dinner with Mom, Dad, Sis, Sara, and Phil... in Boston... the night before my surgery for PVNS... it has been quite a journey... so much has happened since that time... I am lucky and grateful that my pvns has not returned.  Others are not so lucky.

Here is a link about a brave woman who battled PVNS and took control of her own fate:
Brave woman faces PVNS

And another article about a man with PVNS who made a similar choice...
PVNS is NO Joke!

I am lucky that my surgery was successful... but I continue to think of those who battle every minute of every day...

Here is a picture of my leg a few days after surgery... hopeful I do not every have to experience that again!

Near Los Angeles and have PVNS?

I got an email from a woman in California looking to connect with PVNS patients near Los Angeles. 

Here is the email:
Hello!

My name is Amy Haley and I am the Director of Plaza Research in Los Angeles, California.  I came across your blog as I was researching PVNS support groups and I wanted to touch base to see if you maybe you could help me. 

We are holding a paid market research study next week regarding PVNS in Los Angeles and are looking for a patient in the Los Angeles area who can participate in a 60 minute individual interview about their experience living with PVNS.  Do you think it's possible to post something on your blog or contact any of your followers who live in the LA area to see if they are interested in participating?  This is not an attempt to sell anything, the paid research interview is to simply gather information about PVNS.  We are speaking with medical doctors and patients in individual interviews to help gather feedback and experiences.

If you know of a patient in the Los Angeles area they can email me directly or they can call 310.645.1700 and ask to speak to someone in reference to the PVNS study.  This is an in-person interview at our facility in Los Angeles, near LAX Airport.  We can discuss additional information, date and available times, once we can speak with the patient. 

Please advise if this is possible if you are able to help or if you know any other avenues I can try to speak with a patient.  Feel free to check out our website at www.plazaresearch.com or contact me if you have any additional questions. 

Thank you in advance for any help you can provide!

Amy

ahaley@plazaresearch.com

I have no idea what this entails and am not endorsing it, just sharing it for those who may want to research further.  

I'm back in the Right Portland... (At least geographically!)

-->

Today was my final day in ‘the Other Portland…’ at least for this visit.  I am a bit of a worrier when it comes to traveling, though I think I am getting better at it… and typically the day on which I am traveling I do nothing else…except get ready for the excursion… today, was very different than that… granted my flight did not leave PDX until after midnight, so I truly had all day here… there… (I am currently on the airplane as I am typing…wanted to record today while it was fresh in my mind… but will then take a nap, I hope, and luckily I have a whole row of seats to myself!)  Michael had planned to take me to see ‘His Mountain’… Lady Hood… also known as Mt. Hood in some circles… and as soon as I woke up today I knew it was a hot one… I think the temps peaked at 97 while we were out today… but we got up, I fiddled with my luggage so I would be ready to go when the time came… we drove up to Mt. Hood and she was beautiful!  Is beautiful!  There is, obviously,  still a lot of snow up there… and for a chick from Maine, it was fun to stand in snow, in bare feet, in JULY!  We went to Timberline.. a lodge for skiing on Lady Hood and apparently the ‘front’ for the movie, The Shining… which I have never seen… and may now need to watch as a result of being there…  People were skiing and snowboarding… in JULY!  It was cool to see people taking advantage of their resource… they had the ski lifts running and besides taking afore mentioned skiers and snowboarders to the top of their trails, tourists are allowed to ride the chairlift as well, to see Lady Hood in an up close and personal manner… Mike asked if I wanted to go… after I had refused an option to do so at an earlier stop at which we could have come down the hill on a sliding system which sounded pretty fun… but I was nervous… I had never been on a chairlift and the ones at the Alpine place did not have bars that secured people into the seats… umm… me… Miss I am afraid of heights… is going to get her ass in a chairlift to ascend a MOUNTAIN without some kind of ‘seat belt?’  No thanks…. But at Timberline… the chairlift looked bigger, more rugged… AND it had a bar that came down in front of you while sitting in it… so I considered it… then thought  I would not do something like that because I was scared… and nervous… and the thought of it did make my stomach turn… but there was part of me that really wanted to do it… I watched people going overhead on this contraption… and it is something I had never done… and I could tell that the views from the lift and from the destination at the top would be even more amazing…. I told Mike I wanted to do it… but I was scared and he said something like, “Let’s go to the place where they load people and just look.”  Mmmhmmm… just look he said… we got there I looked, my donuts from the morning ride were moving around in my stomach A LOT… and I said I wanted to do it.. and before long I had a ticket in my hand… and we were receiving instructions on how to board said chair lift… Mike is a pro as he and his wife are skiers… but I am/was very much a novice… So. The lift operator was kind, my look of terror combined with my Holy shit holy shit holy shit mutterings MUST have been a clue that this chick was scared… he slowed the lift down for us to get in… and just as Mike had warned me there is a bit of a lurch that takes the lift up to the high cable… and we had yet to put the safety bar down… I remember something about wanting the bar and Mike gently told me I had to move over a bit so that the thing would come down properly… move? Holy shit.. I can hardly sit here without vomiting and now you want me to move? Well … without moving there was no bar… with moving… I got the bar.. so I moved… and got the bar… I was scared… Talk about white knuckle driving!!! I was white knuckling it ALL the way to the destination… I don’t remember if I got any pictures on the way up.. I think I tried… but we will see if I was successful… I was concentrating too hard on surviving this near death experience… We got to the top and had to quickly get off the chairlift.. which we did… and there were some picnic tables set up outside and it was very cool to be that close to Mt. Hood’s Summit… I know I got a couple pictures from that point… I enjoyed it… and was excited that I had taken the ride up… but it did not take long before I realized I had to go back down.. and going back down… well… that looked a hell of a lot higher than when we came up… but.. the other option was walking down the mountain, in snow, with flip flops… which wasn’t going to happen… After a few pictures and a bit of self talk… we headed back to the chairlift… and … I was less nervous about boarding the thing… but… man oh man did it feel Higher… Mike got the bar down quickly… and I do remember getting my camera out.. he offered to help with that.. but I was trying to be a big girl and do it myself… I think I got a couple of pictures, but again, I can’t really remember… it was CRAZY … CRAZY I tell you to be above trees… ABOVE trees!!  Oh my god!  We chatted on the lift, though I cannot recall much of it because I was worrying about my survival….. when we got close to the place where we would get off and our adventure would end… I relaxed a bit… and realized I had lived!  I was happy about that… but will say that my knees were a bit wobbly for about 20 minutes or so afterwards!  I am very glad I did that… and as Michael pointed out.. now that I Have done it I will have more courage to do it again in the future… true… very true… I stepped outside of my comfort zone a bit... and I am glad I did...
After that adventure we explored more of Mt. Hood’s surroundings and then drove back to Portland via the Gorge… it was beautiful… We chilled at the house for a while before Jane got home and we were going to sail… I think of all the things that we had wanted to do while I was there, sailing was the most important to Mike… and I am sad to say that the wind was not working with us… either there was no wind.. or.. in tonight’s case.. there was too much… so we had dinner at his marina and headed back to the house… He drove me to the airport and was able to sit with me for a while before my plane took off… it was nice… though I was sad because it was time to say good bye for this visit anyway… and I will miss him…

 Us on the chair lift... (On the way down, when I realized I had cheated death!) 

View from the top of the lift... see those people coming up? I did that!  

Mt. Hood Selfie!

I have more tales to share and many more pictures... but for now.. this is it... 

I made it home, to MY Portland around noon today.  

Goonies never say die!

Oregon is beautiful!  I may have mentioned that, but it is true!
Yesterday Michael and I drove to the coast, went up through part of Washington state then into Astoria in Oregon... we went up into what is called Astor Column... I have a few pictures, but in the meantime here is a link about  it.

 

I am afraid of heights.  But... here I am...having flown across the country... and seeing some beautiful things... and why wouldn't I go up inside this thing? I wanted to go... then once in side I was a little unsure... the space inside the tower was literally a spiral staircase... not an extra wide one... quite narrow... and as we were climbing up, people were climbing down... I am not sure where in the rules it said that people going up had to cling to the inside of the staircase using the most narrow part of the stair to climb, but that's how it worked... As I was climbing I tried not to look down or up, but focus on where I was... but there were several people coming down as we were going up... and it was hard to not feel nervous.  We got to one platformish area and Mike asked if I was doing ok... I said I didn't think I was doing well and was not sure if I could make it.  I was a little queasy... and he said, you're halfway there you can't go back.  He was right... and at that point my BFA had been in the faces of the people behind me so why stop now... we kept going and soon saw daylight... and then went through the door out to the observation deck... from below, I anticipated a wider observation deck... I could lean against the tower and, at the same time reach out and touch the railing... It was high!  Very high!  It is 125 feet off the ground... and I think for the first time in my life truly understand how people get stuck up high in places being unable to move... paralyzed with fear... I was a bit shaky... and tried to take a couple of pictures... I don't remember how many I took, but am pretty sure it was not many!  Michael took a picture of me however... here it is:

 You can't really tell in this picture... but I am pasted up against the wall of this tower... and there were other people up there... people unafraid of heights who were walking around, far too quickly I might add.. I mean, being up that high it is unsafe to walk at normal speeds... it is important to be calculated and strategic with one's every move.  I stayed against the wall... and as I moved around the tower kept my back against the wall and at times put my hand on the railing at the same time when other people were not in my way... I can say the views were beautiful... but can also say I could hardly move enough to get my camera from my pocket and use it.  After circling the tower I was ready to descend... and that was a little easier than going up... much actually, because I had the railing and you can bet your ass I was not giving that up.
I found this picture online at http://seattletimes.com/ABPub/2011/05/06/2014981023.jpg

 It shows how narrow the spiral staircase is... and how tricky it would be to have people going up and coming down at the same time...

After that we stopped at the gift shop... I wanted something to commemorate my near death experience... and found a magnet as well as a postcard thingy with the facts about said tower... It is good to be alive!  I am glad I went to the top... It challenged me a bit... and I survived... but also erased any small shred of doubt when it came to being certain that bungee jumping and skydiving are NOT in my future!

From there we drove to a state park... and I didn't take any pics with my phone...we stopped at a lookout place over a jetty and got to see some of the beach coast... beautiful... then we went to the beach and I got my toes into the Pacific ocean!  It was beautiful... it was  a beach where there is still part of a shipwreck... and while we were there a wedding was going on... the beach was beautiful... the sand is darker than what I am used to, still gorgeous... we walked for a while looking for beach treasures... It was cool to have a moment of realization of how far from home I was... and how glad I was that I came here!

We drove towards a town called Seaside and tok a bit of a detour into Ecola Park... to see amazing views... I of course wanted a selfie with the coastline behind me... and Michael was kind enough to agree... but it was funny... I was trying to get my phone in the right place to take a selfie of us and at first cut off his head... now... Michael is a tall person... around 6'5 or so... and I am 6'6... so as I was struggling to get him in the picture I said something about him being too short for the shot... and snapped the selfie just after I said that and look at the look he gave me!  This picture cracks me up! 

Then he and his ego recovered and we took this one...

 Fun stuff... 

Then we walked to a look out point and took this selfie... 

The coast is amazing... just beautiful!  

From there we went into a town called... Seaside... it is a busy town, very touristy and very ... bardwalkish... the beach there is also pretty.. and we found a place to eat...called The Crabby Oyster.  It was a good place to eat and to people watch!  After Seaside we wet to Cannon Beach... a much smaller town and less busy... we met some of Michael and Jane's friends and then went to the beach... down to haystack rock... which you can see in the picture above... the rock furthest away shaped like... well... a haystack...

 

It is the scenery from Goonies... but even prettier in person.  

We returned to Cannon Beach to get some pizza to take back to the house... and I said good bye to the Oregon coast, for now... 

I loved getting time today with Michael.  We had a lot of laughs and are at ease with one another.  

I am grateful he is taking the time to show me so much of Oregon... I doubt we will spend much, if any time in the city of Portland, other than being in the river later today in kayaks... and, I am okay with that.  I have had the opportunity to see where my Friend lives, people and  things in his life he has told me about... and I have very much enjoyed it.  

Life is Good!

Oregon

I am on the West Coast... specifically, in Portland, Oregon, visiting Michael!  I am so excited and grateful to be here!  It is BEAUTIFUL!  The word of the day for yesterday as we drove through the Columbia River Gorge was...LUSH!  Everything was so green and beautiful.  I took just over 300 pictures in just one day!  Michael and his wife have a convertible and it was so much fin to ride through such amazing sights with the top down.  Maybe one day I will have to get a convertible!  This one has a surprising amount of leg room!  I love the forests here... when I think of Oregon and Washington I picture evergreen trees that are tall and skinny, and that's exactly what they are here... and there are so many!  Who would think a girl from Maine would be impressed by the amount of trees in another place? But I am!  We also drove over into Washington state and looked back across the river at Oregon.  It truly is a beautiful place! 

I am so happy to be exploring some new terrain... and even more happy to be spending time with a great Friend!

Thanks for Michael and his wife for hosting!
Here are a few pictures:

(Of course there will be more pictures to post...I forgot the cord that goes from my camera to the computer... so, y'all will have to be happy with the pics taken on my cell phone for now!)