RP Social

Rose, Susan and Laura at the RP Social - Portland 2009

Bear Hug!  Camp 18 - Oregon

How did i come to meeting the RP (Retinits Pigmentosa) Support Group?  Facebook, thats right through Facebook.  I know there are alot of bad publicity out there on Facebook, but let me tell you about the good stuff.  I have to thank my daughter for signing me up for Facebook, if it weren't for her, I would never of met all the wonderful people that I have met.  It was an RP support group that I came across that Jackie Meek from Wales had started.  Of course I joined her site and instantly the support was available from all over the world.  I was so happy to be able to chat with others that have Ushers.  At this point, I have never met anyone with Ushers, never known of anyone with Ushers...till now.  My first friend was Laura, a young nurse from Salt Lake City, she informed me of an RPList which is a group that based in the US.  I joined and made more new friends.  Support was now plentiful - and they have a Social every year.  The RP Social was set for July 2009 in Portland.  I thought to myself, I must go, I have never met anyone in person that has Ushers and here is my chance.  Then I started to chat with Susan, from Portland she was the designated host for the Portland Social.  My friends list expanded and the support grew.  I then booked my flight to Portland.  Never have I ever done such a thing.  First, to travel on my own, and second, meet a group of people whom I never met and third, share a room with someone I've never met.  Well it was the best thing that I ever did.  I learned very quickly to use my cane to help me at the airport and had help from the moment I took out my cane in Victoria to Portland.  It was great.  When I got to the hotel, I was welcomed with open arms from my new friend Laura!  I knew from that moment on, we are going to be good friends.  We had so much fun, sharing our stories and experiences with Ushers/RP.  Lots of laughter and some tears.  It was an incredible journey for me.  All those people that I met, for the first time in my life I didn't feel alone.  It has been a lonely road since 1980 (diagnosed at 16).  I have learned a lot from all those I've met and will continue to learn.  I knew that I will go to the next social in 2010. 

SOCIAL 2010 - SACRAMENTO, CA

This years RP Social was located in beautiful Sacramento, California.   Last year I had such a good time in Portland and wanted to go again.  After a year of planning and saving, it became a reality.  Excitement was built up as we chatted on line and making plans.  I was looking forward to seeing Laura and Susan again.

So, the journey begins..car ride to ferry, ferry to mainland to bus station, bus to Portland.  It was a long day.

  Susan's Husband  Dan picked me up at the station and drove back to their home.  Susan and Mirage welcomed me to their home.  It was a nice relaxed visit and stayed up till 2am.  We had a flight to catch that day.  Susan, Mirage and myself flew to Sacramento and shuttled to our hotel.   We dropped off our stuff in the room and went straight to the Hospitality room where we were all to meet and greet.

Marisa, Mickie and Laura - RP Social 2010

Our days were filled with lots of trips - Winery, Railway Museum, Old Town Sacramento, River Cruise and fantastic dining!  It was great to see everyone again and to meet new friends.  Especially those who were from the RP chat room.  During our social, we had an incredible group of volunteers from the Lions District 4-C5.  They drove us to all the events and tours.  I also learned that the Lions were the KNIGHTS FOR THE BLIND.  I decided that I would like to become a Lion myself.  The hosts Mary Dignan and Larry Marcum (also a Lion) did a fantastic job of pulling it all together.  Especially enjoyed the BBQ dinner at Marys house.  It was tough for me to say goodbye to my friends this year...looking forward to 2011 RP Social.

Mirage taking a break

Guide Dog: to get one or not?

Lucy - October 2003 - June 2010

We had Lucy for 7 years and she was the best dog I ever had.  She was a rescue dog from the SPCA, abandoned and in poor health.  Just lost a dog months prior, we were ready for another dog.  There she was looking at us through the chain link fence, quiet and timid.  I fell in love with her immediately as so did the rest of the family.

She had brought lots of joy in my life and helped me fill my days while the family is at school and work.  We went everywhere together, walked, hiked, swam, and yes, shopped.
She was almost a guide dog:  had many talents, barked to alert me when someones at the door, help me find things on the floor if i dropped anything and often stopped dead in her tracks before harm comes our way while we were out walking.   Sadly, she died of Cancer this year and i miss her terribly.

Now I'm wondering, if I'm ready to get a guide dog.  I want to have a guide dog for the right reasons, not just as my pet.  But how do I know when I'm ready to get a guide dog?
I'm a very independent person and want to do everything on my own, but except help when needed.  It took me many years to learn to accept help from others.  I don't accept help all the time - people don't realize how hard it is to ask for help.  So maybe a guide dog could help me with that....
What do you think? 
Those who have guide dogs... give me some guidance, i would value your opinion

Still learning to use the cane.  Its awkward and don't like to use it much - will be taking some O & M classes soon to help me with that.

Edge to Edge Marathon 2006 (relay)

Hello everyone!

My name is Rose.  I am a runner and have Ushers Syndrome (Retinitis Pigmentosa with Moderate-Severe Hearing Loss).  Started with walking/running, making each telephone pole a new goal as i run further and further. Spring of  2004, I felt I was brave enough to join our newly formed running club in my hometown.  It was such a struggle to run with the 'athletes' in our club, I really didn't know much about running then, even now after 6 years of running I call my self a 'newbie'.  After hard  work and determination in the first year, I completed my first 1/2 Marathon at the Royal Victoria Marathon.  As soon I had the finishers medal draped around my neck, I knew that I will be doing this again.  It became my passion!  From there on I ran numerous 1/2 marathons, 10K and various distance races.  It was 2007 that I have decided to tackle the FULL Marathon.... what was I thinking?  I can't run 42.2 KM?   I started to train with my husband, we always started our runs together and finished separately, we even had walkie talkie to keep each other motivated.  That proved to be cumbersome and awkward.  We realized that we just have to DO IT, train and deal with our demons on our own.  After all the hard work of training, we completed our 1st marathon (October 2007) at the Royal Victoria Marathon.  He hasn't ran since.  Me, on the other hand, couldn't get enough of it.  There was one problem...it was hard to run with the crowd of runners, it was frustrating, tiring and scary (constantly scanning with my limited vision).  Training was much easier, because it was quiet with less people and obstacles.  I was ecstatic that I qualified for Boston (VI category).  Oh, I dared to dream...



to be cont'd

Well, I decided to run a marathon again.  Trained mostly by my self and one day a week with the club.  My husband at this point given up running all together and took up cycling.  Hmm, maybe I will try it for cross training, (at this point, I was in my 2nd year in Dragon Boating, swimming,  yoga and walking my beloved dog Lucy.)
Cycling, well,  I discovered it to be pretty frightening riding my bike on the road, felt intimidated by the traffic - too many close calls.  Never mind, I kept riding for about a year.  I gave it a fair try.  Not my thing.  I much prefer trail riding.  Well, it  was about 4 months to go before the marathon and training was going well.  I was running towards the end of the street before crossing the road, looked both ways and noticed a car coming to a stop and looked at the driver and I thought he acknowledged my presence so I proceeded to cross the road, and so did the driver.  I couldn't believe it, I got hit!  He yelled out of the window and asked me if I was all right. I lied and said I was fine.  Well, really I was too proud to say I was hurt.  So I limped away to the nearest place that I knew would have ice.  About a 1/2 KM I walked/run to the Veterinarian's office and asked for an ice pack.  The receptionist handed me the bag and asked if I needed to go to the Hospital.  I thought the ice would be enough.  I sat and iced my bruises for about 1/2 hr. and ran home.  As I got home, I took some Advil and more ice for the bruises.  Felt okay... till the next day, my ribs were very tender to touch.  So I thought, well, they are just bruises, it will go away.  After 2 weeks of soreness, I knew it was more than just a bruise.  Went to the Dr. and told me that I could possibly of had a slight fracture on the rib, and not much can be done about it.  Running was tough at this point, it took a long time to heal - my plan was LOADS of Advil and to run through it.  And so I did, ran my second marathon, it was a good run, but proven to be more difficult with the challenges of my deteriorating eyesight.
Qualified for Boston again and was determined to go to Boston, and other runners in our group wanted to go too.  After a Saturday morning club run we went for coffee, there was a few of us that talked about travelling together and run the Boston Marathon.  At that time I discovered that our club President was a sighted guide in his previous job.  He said that he would be my guide - we became a team!  (it still makes my eyes water, thinking how he gave up his pace to match to my pace - hes a faster runner than i am).  Training was incredible... worst winter we had in years, but determined we were.  ICE, SNOW, RAIN, WIND  - we never gave up any training days due to bad weather, we just kept going.  We all trained without any injuries, which was amazing, so much snow and ice that stayed around for weeks!

BOSTON!!! coming up...

Canadian Eh!

There was eight of us that went to Boston, our group (4 of us) shared a brownstone condo, location was great!  We were pretty close to everything:  restaurants, shopping and of course the convention center where the Boston Marathon expo was.  We went to pick up our race packages - it was incredibly busy.  I have never seen so many runners in one place.  The expo was excellent, great deals on runners and lots of cool Boston Marathon memorabilia and clothing.  Of course we all bought the "JACKET" .  It was like we were some special gang and just been initiated.  None of us wore the jacket until after the marathon.  Went to the cheese cake factory and couldn't believe all the choices!!!! Oh, boy, I was thankful that the queue was long, so we can decide what to have.  We choose 1 piece of Vanilla Dream (1 pound of cheese cake that is) to share.  We brought it back to the condo and ravished the cheese cake like there was no tomorrow...our other roommates just got back from the Boston Sox ballgame at Fenway park all dressed in their souvenir jerseys, hats and scarf!  It was so funny - unbeknownst to them, it got really cold watching the games, so they wore all the clothes to keep warm.  We didn't share the cheese cake, they just came back a moment too late.  RACE DAY - well, we all woke up surprisingly quite relaxed and calm, we had the thickest oatmeal for breakfast (i think someone misread the cooking instructions) - but it stuck to our ribs.  We got dressed, tatooed our legs with Canadian flags, grabbed our bags and walked out the door to meet other friends at the Bus pick up area.  Group pictures were taken, excitement grew, nerves building up, and last chance potty breaks before heading on the bus.  Mistake number one: never did the last potty break!  While holding on for 1hr and 1/2 on the bus ride.  I was bursting.  When we finally arrived, we immediately went to the line up to go for our last comfort break before the gun goes off.  By then I was in pain, holding for that long got quite uncomfortable... I started to feel woozy and teary eyed.  I just wanted to squat behind the bush, but I knew that you can get arrested and get instantly disqualified.  Wouldn't want to do that after all the hard months of training and missing the biggest experience a runner could have.  After that horribly long wait to the toilet, we were on our way to the wave start - excitement was fluttering in my stomach, we were all smilling wishing each other good race, hugs, and were off! 

THE RUN!!! following...

The gun went off....and off we went.  It was the first marathon that Chris and I ran tethered.  I used my yoga mat strap and we wrapped each end on our arms.  Wow, was that uncomfortable.  Nevermind, there was way too much excitement happening on the route.  So many people cheering us on, the support from the crowds were incredible, you could not help but to keep running.  There was so much entertainment on the course, Elvis singing, some college students whooping it up on a balcony (keep in mind it is still morning and some students were just plastered!) bands playing.  I have to admit it was overwhelming - I kept taking pictures of all the cool things we saw, it is just too bad that most of those pictures were feet and pavement.
I have read so many stories about running the Boston Marathon - the dreaded Heartbreak Hill (Newton Hills) and thinking to myself, when are we going to hit those nasty hills?  So I asked Chris "When are we going to hit Heartbreak Hill?"  he said "oh, we past that about a couple of KMs back"  Well, I didn't expect that as an answer.  The hills we have trained at home were far more challenging!  Oh, and the students of Wellesley College were the loudest bunch, you could literally hear them a KM away.  I had to turn off my hearing aid, it was that loud.  Loved every minute of it though.  Then I saw the CITGO sign that everyone talks about, once you see that, you know you will be finished soon.  I got so excited, we are almost done.  Legs at this point were tired, but hey the finish line is not too far away and looking forward to a nice meal, wine and to wear THE Boston Marathon  jacket.  Just as I saw the finish line, I said to Chris, I want to let go and as he slipped that strap off my arm, I went for it.  I could feel the stinging in my eyes, tears welling up and the tears started  to flow.  I quickly wiped my tears as I stepped on the finish line and Chris was just behind me.  We were so happy, didn't care how long it took us to run the marathon, didn't care about all the stops on the way, didn't care about cramps, aches and pain.  WE did it!!! I could not have done it with out Chris.  He  truly helped me achieve my goal.  It was an experience I shall never forget as long as I shall live.

Boston 2009!