• TrinaSeligman@C4Now.org

Author Archives: TrinaSeligman

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Saturday Trip Report – Summit – Day 5

Today was the Summit Day, Trina topped out!  She “Sent The Nose”.  The tradition is to touch the lonely tree at the top to end the climb.

 

She did incredible today, it was not an easy ending.  The last pitch was the most technical and challenging of the entire climb.  It was severely overhanging leaving the climber fully exposed and dangling on the end of the rope, very aware of how high 2900ft actually is.  The next couple of shots gives a little stomach turning perspective on how high that really is.

 

Mark and Trina started the 4 hour hike down around 4pm and will be back in the Valley for good meal and soft bed by tonight.  Job Well Done.  Great Work.

There will be lots more photos and video added to the site in weeks to come as Trina gets it all edited and published.


It is not to late to join the 2900 Challenge!  Give $29 bucks for 2900ft of climb.  

Trina did the hard part, you can do the easy part.

 Jump over to the Donation Page and help to find a cure for Crohn’s & Colitis.  

And Stone Gardens is still matching every single penny donated!  Way to go Stone Gardens – you’re AWESOME!!


 


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[Latest!] Friday Progress Report – Day 4

Friday Night at Camp VI

 


Donations to the Crohn’s & Colitis Foundation have been pouring in!!  

Since the 2900 Challenge began only 2 days ago,there have been $1530 raised as of Friday morning.  

With Stone Garden’s generous matching program, that is $3060 added and Trina hasn’t even finished the climb yet!  

Thank you to all the generous donors that have contributed.  It is never too late to join in the challenge,

please consider  a $29 contribution for the 2900 feet that Trina is climbing


 

Trina and Mark slept Thursday night at Camp IV which is a tiny sloping ledge and not very comfortable. The portaledge is a more comfortable flat surface to sleep on but had to be set up with a huge step up from the ledge.  As Trina needs to take bathroom breaks many times during the night, it was too difficult to get on and off so she gave the portaledge to Mark and she laid out on the ledge.  Apparently is was none too comfortable and she felt like she was sliding towards the edge all night.  She ended up in the position you see in the photo on her knees leaning over and burying her head.  Not very comfortable and I am sure not much sleep!  

The morning started pretty cold and overcast with a little rain.  This apparently did not slow them down.  They got to work getting past the first major obstacle of the day, The Great Roof.  It is a daunting overhanging rock.  The climb follows the crack up under the roof, and then a long traverse right to get around the side.  Traverses like this are usually more difficult for the second climber as the gear must be removed along the way.  This gets tricky as the climber so much weight has been placed on the pieces, they can be very difficult to unlodge.  It becomes very technical since the climber has to move past the last piece so the weight is shifted to the following piece, then reach back and work the last piece out from the crack.  It can be a very slow and frustrating process.

The pictures show Mark leading up to and around The Great Roof.  No pictures yet of Trina climbing it.

After that the only message sent back was to announce their arrival at Camp VI late in the day.  A poor internet connection prevented any more updates or photos from the day, so we will wait and see what tomorrow brings.  I would expect them to summit tomorrow.  The plan was to spend one night on top to rest before starting on the 6 hour hike down Sunday.

 

Camp IV was not a very comfortable sleep

The sleep position taken to prevent sliding towards the edge…

Mark on lead approaching The Great Roof

Traversing to the right under The Great Roof

Pancake Flake above The Great Roof

 

 


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Thursday Progress Report – Day 3

Thursday Night at Camp IV (see the map below).

Trina sent some video from Camp IV where she is spending the night.  This is a little more than half way but the second half is more vertical and more technical causing slower progress.

40% change of rain tomorrow morning, so they may have to wait that out, but they are prepared for it.

The next major feature is “The Great Roof” which is like it’s name says, a huge roof that they need to climb out and around. Trina says it looks pretty intimidating from where she is now below it.

If all goes well she should summit on Saturday and do the 6 hour hike down on Sunday.

 

 

 

Arbonne Sunblock – going to need that today! Thanks Ashlie Setcavage!

The Great Roof – Tomorrow’s Challenge!

 

 


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2900 Challenge

 

 

If $29 is too much please consider a donation for any amount you can afford.  All donations will be matched by Stone Gardens up to $10,000.


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Wednesday Progress Report – Day 2

Wednesday Night – Dolt Tower

Tuesday night was spend on Sickle Ledge.  Wednesday was a good day of climbing up Stoveleg Cracks to the ledge at Dolt Tower.  This is a good flat spot to spend Wednesday night, although only large enough for one party. (11 pitches so far).  
Trina had an early morning surprise visitor on Wednesday by the name of Hans Florine! Hans along with Alex Honnold hold the speed climb record for climbing The Nose in 2 hours 23 minutes 46 seconds.  Yes they do in under 2.5hours what it takes most climbers 4-5 days.  They only carry a small pack with some water and food, so there are no heavy haul bags with overnight gear.  Hans is also known for climbing The Nose more than 100 times!  I was SO inspired by his book: ON THE NOSE: you can buy it here: http://www.hansflorine.com/?page_id=252  


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Tuesday Progress Report – Day 1

Tuesday Night on Sickle Ledge

Trina and Mark (her guide) got on the climb at 7am today.  By 9am they had made it to Sickle Ledge (see the map) and caught up to two slower parties.  The other parties planned to sleep on the next significant ledge called Dolt Tower, which is where Mark & Trina had also planned to overnight.  The ledge is too small for all so Mark & Trina decided to stay put on Sickle Ledge for the night.  They were done the day at 9am!  It will probably put them into an extra day, but this should not cause a problem, and they contacted another party starting tomorrow to meet up with them and bring an extra day of food.

So the rest of day was spent snoozing and trying to get some shade.

 

Monday 6am – Trina & Mark leaving the parking lot this morning

Trina getting last minute “Beta” from Steve Schneider (or better known as Shipoopi). Shipoopi is OG in Yosemite. He has climbed El Cap over 80 times and along with Hans Flourine was the first to speed climb up The Nose in less than one day (Nose In A Day or NIAD). He and Hans once climbed The Nose three times in one day!

Final gear check by Mark before leaving the ground for 5 days

Ready to go!

Mark fixed a rope to Sickle Ledge a couple of days ago, so they can quickly make the first few pitches climbing directly up the rope. The haul bag at the bottom of the shot is one of two bags affectionately known as “The Pig”. Over 40lbs each, it contains food, water, clothing, & gear to spend days and nights on the wall. Water being the heaviest item, is always in short supply.

Monday 8:54am – Trina at Sickle Ledge waiting for other parties ahead to clear. CLICK ON PHOTO and find Sickle Ledge on the Map.

View from Sickle Ledge looking up to the party climbing ahead fo them

Getting some shade and some rest!

Sickle Ledge

The end to a great first day. Night time on Sickle Ledge.


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Trina has arrived in Yosemite

6/5/17

Trina arrived last night in Yosemite National Park and spent the day today sorting gear and preparing for an early start tomorrow morning. Her guide mark and herself we’ll meet at 5:30 a.m. For the 30 minute hike in and begin to climb.

Yosemite is abuzz with the news of Alex Honnold completing The Climb called Freerider on El Capitan on Saturday in a little over four hours. He did it free solo which means without a rope or any protection of any kind. One mistake and it’s all over. Onlookers watched his progress up the difficult climb rated 5.13a which is a unattainable level for most climbers even with a rope.  Friends at times turned away because they were afraid of watching some horrific end. However Alex climbed it with Incredible calmness and speed and made it safely to The Summit.

When Trina starts her climb tomorrow morning it will definitely not be a free solo, and not even free climbing, which means using a rope to catch a fall but not using any gear or aid devices to move up.

Her type of climbing is called Aid climbing in which many of the pitches are climbed by placing gear in cracks and on bolts an arm reach up and then using the gear to move up instead of using one’s hands and feet on the rock. By doing so a climber can make their way over difficult pitches that otherwise would not be doable for their skill level or even at all.

Her guide mark will lead the pitch, moving up a rope length at a time. the Rope is secured at a convenient anchor spot and Trina as she second climber will ascend up the rope, using devices called jumars.  This technique is called jugging and is extremely strenuous like doing 10000 pull ups.  While Trina jugs up, Mark will be hauling the two large gear bags weighing more than 40 pounds each which contain food water sleeping bag and all the necessary gear for spending three nights on the wall.  Once Trina and the gear are at the anchor station the cycle repeats in the next pitch is climbed.  The experience of hanging out on a big wall thousands of feet in the air is exhilarating.

Please come back for updates on progress and Like her page on http://Facebook/c4now

Update by Craig Avis


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7 weeks to Yosemite!

7 Weeks to the climb and I am feeling good!


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The backstory of Trina’s struggle with colitis

“Fortunately I have a team of doctors that Never Give Up!”

Trina shares her story of her struggle with colitis since teenage years that she would not let define or limit her, as she rises above it to live out her aspirations of climbing big walls!


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Here we go again!

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When the famous English mountaineer George Mallory was asked “why do you climb?” he retorted “Because it’s there”, possibly the most quoted 3 words in mountaineering.  It is not a question asked of every athlete but we ask to climbers as if to question their sanity or responsibility.

For me the answer is intricately entwined with a second more personal question: How do you live with an autoimmune disease? This illness has no cure.  As a doctor, I am frequently asked by my patients,

 

“How long before my pain is gone?”  
“How long before this treatment works?”
“How many days do I take this medication?”

 

People want answers, they want to know; they want an end-point to their disease.  However there are no answers and no cure for autoimmune disease; only management.

 

Patients with autoimmune disease do not get an answer to these questions.
They must live with uncertainty.

 

As many of you know, I was diagnosed with ulcerative colitis at age 15 and have continued living in spite of it for 31 years. Through those years, I have taken countless medications, had many hospitalizations and many surgeries. There has been times of chronic pain, weakness and debilitation. There have been times that I questioned if I would survive.  There were times that I wasn’t sure I wanted to survive.  During those times, I had to “dig deep”. I found companionship in reading stories of climbers who dug deep in their adventures in the mountains. It is amazing how far we can push the body when the mind is willing to keep going. It is these stories of climbers enduring hardships, pain, victory and defeat that inspired me and gave me the confidence to know the body will follow.  These stories gave me strength and inspiration and the will to fight so that I can regain my health and live these adventures.

As so many big wall climbers are, I was drawn to Yosemite, the mecca of big wall climbing.  In Yosemite, one finds a lifetime of challenges of all sizes – the biggest and most famous of which is The Nose of El Capitan.  To see this wall for the first time is awe inspiring, it is hard to imagine it can be climbed.  Yet sitting in El Cap Meadow, with binoculars one can pick out a climbing team here and another one there.  It is captivating and one can do nothing but sit there and watch the slow progress of various teams as they make their way up that 2900’ wall.  

El Cap scale comparison with well known vertical icons. Measurements are to spire tips. Eiffel Tower (1,060′), Space Needle (605′), Empire State Building (1,454′) and the Sears/Willis Tower (1,729′). Credit: Gunksgoerr

Night time back at the meadows and one can count the lights of the teams camping on the wall either on rock ledges or portable ledges.  I would sit there wondering what it must be like to sleep (or try to sleep) up so high on this magnificent wall.

 

I knew climbing The Nose was something I wanted to experience. 

 

I wanted to see what it was like to push myself further than I had ever pushed before.  But this climb challenges the best of the best.  For most climbing teams, it takes 4-5 days to summit if they make it (it is estimated that 40% decide to retreat).  More than half a century ago the wall was considered unclimbable.  Warren Harding was one of the most accomplished and influential rock climbers between 1950-70.  He spent much of his time in Yosemite pioneering new routes, and he set his sights on The Nose.  Harding and his partners spent 18 months exploring and finding a route to the top all the while not knowing if it was possible. As they climbed, they fixed ropes so that they could rappel down and back up again as needed for supplies and alcohol (Harding had a reputation as a partier).   In the fall of 1958, Harding and his partners finally topped out after a push of 45 continuous days on the wall.  Harding later reflected,

 

Warren Harding (Courtesy of Glen Denny)

“As I hammered in the last bolt and staggered over the rim, it was not at all clear to me who was conqueror and who was conquered: I do recall that El Cap seemed to be in much better condition than I was.”

 

 

Many have climbed The Nose since and climbers have taken up the challenge to complete it faster and faster, with the current record being held by Hans Florine and Alex Honnold in an unbelievable 2 hours 23 minutes and 46 seconds! 

My goal is not for speed; I leave that to the superhumans.  My goal is to prove to myself that I can rise to this challenge, overcome my difficulties and complete the climb despite IBD.  My goal is to raise awareness for Crohn’s & ulcerative colitis (Inflammatory Bowel Disease (IBD)), and to show others that suffer from these diseases that they do not have to live their life tethered to a bathroom.  And finally, I ask you to support my latest goal to raise $35,000 that will go for research to find a cure for this disease.   

 

Please support me in this climb

 

Please support me in this climb with whatever contribution you can afford. Every dollar will help.  And please LIKE my Facebook page to get regular updates as I progress through training and preparation for this challenge of my lifetime.

Never, Never, Never Give Up,

Trina Seligman  

 

Main photo: Trina & Miranda Oakley in their 2016 attempt of The Nose, courtesy of Tom Evans

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Climb On !

 
 

Last September I attempted to climb The Nose of El Capitan in Yosemite.  After the second night on the wall, and about 1/3 of the way to the top, my guide Miranda Oakley  and I were forced to retreat due to weather and logistical problems.  Although we retreated, I didn’t consider it a failure.  4 months of training for the climb had helped to improve my health, and I had gained so much experience and insight being on the wall for 3 days.

I came off the wall content knowing that I had tried my best, but I was done.  After only a few weeks however, I started developing amnesia about all the discomforts of living on the wall.  Instead I kept thinking about everything that could have been done better, and how much I really enjoyed the challenge. I wanted to return to Yosemite to finish what I started.

I knew I must go back. It’s an internal drive, not one that I can easily explain.

The wonderful people at Stone Gardens climbing gym once again got behind me.  They immediately committed resources for training and help with fundraising.  I could not make this happen without their support.

So, here we go, training again, Climb On !  I plan to return to make another attempt on The Nose of El Cap in June 2017 while raising money to help find a cure for IBD! 

Please join me on this journey, and …

Never, Never, Never Give Up,

Trina

 


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Thank You

Dear Friends, Family, Patients and Stone Gardens,

From the start, I had 3 goals in mind for Climb to Cure Crohn’s & Colitis (C4now.org)

 

  1. Raise awareness about IBD.
  2. Raise money for research through the CCFA
  3. Climb The Leaning Tower

 

When I first dreamed up this project, I realized it could only happen if Stone Gardens climbing gym agreed to get on board.  This is a highly technical climb and not one that I could train for without special permission in using the gym and instruction on these techniques.  Fortunately, they are very charitable and could see the mission and importance of the climb from Day 1. They agreed and partnered with my charity C4now.org

 

I want to thank you for taking the time to read my frequent newsletters, facebook posts and blogs.  I hope that this has helped in some small way to raise awareness about IBD, both Crohn’s & Colitis as well as living with any chronic or autoimmune disease.  Life has its challenges and we all have our stories.  I thank you for taking the time to learn about mine.

 

To date, I have raised over $26,000 to benefit research through the generosity of over 200 donors. Thank you.  Today, both CCFA and the National Institutes of Health (NIH) actively support research in the field of IBD, and there are approximately 80 new therapies in the pipeline as a result. The money raised by this climb will be used fully towards research.

 

Thanks to the commitment of my family, my own doctors and Stone Gardens, I had the right skills the right weather and the right moment to climb and Top Out on The Leaning Tower.  It was an awesome climb, made just a little more special when I heard the little voices of my kids through the radio as I pulled myself over the second roof of the climb; as they watched in binoculars from the valley below.

 

Thank you Stone Gardens for your support of this climb:

Photos Below:

Never, Never, Never Give Up,

With Gratitude, Trina Seligman


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Integrative Medicine

Ellesmere Island, 1987

My father, Brother, Blair and myself (note hiking in Acid-Wash jeans; wow, cool !)

 

Integrative Medicine

 

I believe in Integrative Medicine. I have to. It has taken a combined effort to get me where I am today.

 

From as young as I can remember, my father traveled to the Arctic and brought home pictures of the tiny Inuit villages and the amazing people that created art from the limestone and lived and thrived in this harsh region.  I had to go.

 

On my first hiking trip at age 13 to Auyuituq National Park on Baffin Island, my brother, father and myself hiked for 7 days.  Not only did I fall in love with the people of the region, but the landscape ignited a passion for the Arctic that continued to draw me back.

 

At age 17 we were planning another back-packing trip to the high Arctic, Ellesmere Island. The last piece of land before the Arctic Ocean and north pole.  My father, my brother Blair and myself would be alone hiking, dropped off by Twin Otter from point A to point B. It would take 2 weeks to hike out.  Less than a dozen people have the privilege of visiting this region per year so the likelihood of seeing anyone was remote.

We were able to see the campsite of Franklin and the British explorers who had perished in a winter on Ellesmere.  Their campsite untouched due to the remoteness of the area, and preserved by the cold, as if they had just left. The evidence of the lead solder cans which likely killed them lay strewn about. When you read the history of the British explorers determined to find the northwest passage and visit this harsh region, you realize just how tough these men were in their felt jackets.

I had been very sick before we left and had spent several months that winter in the hospital treated for Ulcerative Colitis. My doctor was not too excited about the remoteness of the area.  He decided I could go if we carried a 6 lb radio (the size and weight was a huge hardship) to contact the RCMP in the case of emergency, IV solumedrol for the RCMP to administer and steroid enemas (which froze anyways).  We agreed to the terms and the RCMP confirmed they would have a helicopter at the DEW line station in Alert during the period we would be traveling. Fortunately, I did not suffer any medical complications. But my doctor’s willingness to work with me set a high precedent for my future care-givers on what could be accomplished.

 

My doctors have continue to work with me to create unique strategies so I can participate in outdoor adventures that others may not try or may not have the co-operation to try.

 

This season, I have had good health for the entire training season.  Last week, my pulmonary function crashed.  Dr.Paul Pottinger sent a prescription from 8000 feet on Dragontail Peak in WA over his Memorial Day climb. When I inquired about his whereabouts he said “Whatever it takes”. Dr. Josh Benditt and Dr.Pottinger have been contacting me from 8 am-10 pm by email and text to make daily changes.  My entire climb hangs in the balance of them finding the right combination.  Finally, through their extraordinary efforts, I see my peak flow start to rise.  We are packed, we are ready to go…..it all rests on my doctors for the last steps.

 

My nutrition is calculated, all the food for 3 days, packed (see photo). My fitness and training complete. This week, Jimmy from Stone Gardens worked with me on emergency techniques and special knots.  Medicines are packed and constantly being repacked and recalculated.  It’s an Integrative approach indeed.

 

Photo: 3 days of food packed for the wall

 

Thank you to Dr.Paul Pottinger, Dr.Josh Benditt and Dr.James Lord for this extraordinary effort.

Thank you to my family, friends and patients and to Stone Gardens for their sponsorship, training and support.

 

The plan is to fly out Saturday, have a training climb Sunday, rest day Monday and weather-dependent, climb the Leaning Tower Tuesday/Wednesday and Thursday.  Wifi is sketchy in the valley, but if Craig is able to get an update, he will post on facebook.

see www.facebook.com/C4now

 

To make a donation to support research for Crohn’s & Colitis see www.c4now.org

 

Never, Never, Never Give Up,

Sincerely, Trina Seligman

 

Thank you Stone Gardens for your sponsorship, training and support:family 3 2017 family 2017family 2017


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What Did Your Mom Say ?

 

Thank you for your Partnership Stone Gardens

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Stone_Gardens_Red_Text

What did your mom say ?

 

Preparing for a Big Wall, particularly when you have a health care issue inevitably leads to many questions, but one of the most common is “What did your mom say?”

 

Having a severe disease at a young age leads to a different relationship with your family than if you grow up healthy.  Siblings are taxed in ways that I don’t pretend to understand and in my case, they have risen to the call of duty and always been there with encouragement and support.  My parents were always at my side day in and out, with unwavering strength.

 

My husband, Craig (name meaning Crag or rock) is my rock.  He is not particularly ruffled by the ways in which IBD has woven itself into our lives.  He stands by me and belays me through the tough times.  At a moment of weakness when I asked him “What if I can’t do this ?”  He replied simply, “Why wouldn’t you ?”

 

My kids, also now have become part of my support team. They climb at the gym and continue to work because they understand it is important to raise money for the children in the hospital. Skyler (age 7.5) helped to put things in perspective and said “It’s not the Dawn wall”.  He later wrote a letter on my behalf  “Dear President Obama, my mommy is climbing a Big Wall.  Call her.  Signed Skyler”.  Robyn (age 7.5) said “I want to give my $3 where do I give that ?”

I showed her a video of the Leaning Tower which you can see at:

 

LeaningTowerVideo.C4Now.org

 

She said “It looks pretty. Nice view” and then offered the following advice “Don’t drop your sleeping bag off the ledge”.

 

Friendships are also stressed by chronic disease, but it is amazing how many friends of old and new have made contact by facebook, email or a pledge of support. To date, I have received 150 donations; too many to thank individually by this letter but know that each one is meaningful to me.  My long time friend Lesley said “If I didn’t know you so well….I’d think you were insane…but I know you are just so passionate about the cause. You can count on my support, as always. Xoxo “

 

New partnerships have been forged this season.  Stone Gardens pledged sponsorship early on.  Each week I train with Jimmy,  a Stone Gardens instructor who sets up complex routes so I can practice ascending overhangs and traverses. The whole staff has been there to support me and  Stone Gardens has made a generous financial contribution to the CCFA. When I inquired about holding a fundraising party at the climbing gym the owner enthusiastically replied “We can do it”. This climb couldn’t be a success without them.

 

So what did my mom say ?

She said “How can we help?

 

So, I continue to climb on.  Belayed through life by family, and friends and by my climbing partners at Stone Gardens.  I have no choice but to climb, “Why wouldn’t I ?

 

To follow my updates see: www.facebook.com/c4now

To leave a comment or make a donation see: www.c4now.org

 

Never, Never, Never Give Up,

With Gratitude,

Trina


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One Breath at a Time

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Website
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Thank you Stone Gardens for your partnership.
One Breath at a time.Dear Family, Friends and Patients,Raising money for research means so much to me.  Thank you for your support without which this could not be a success.  To truly beat this disease, we need to find a CURE.

When I was first diagnosed with Ulcerative Colitis, at age 15, I felt the love of my family around me.  Each day my mom would spend at the hospital keeping me company and playing backgammon. In the evening my brother, sister and father would come after work. Their support and cheer gave me strength.  Following my surgery I became healthy again and I felt like I had beaten the disease.

It wasn’t until my husband, Craig and I decided to have children that I had to look again at what impact this disease and surgical complications may be having on my life.  After years of trying to conceive and using advanced fertility methods, we concluded that I was unable to carry a pregnancy and decided to take another path.  It took 8 long years but we finally had success, with the delivery of our boy/girl twins, carried by a loving surrogate.  Again, I thought that I had beaten this disease.

The last 10 years, I have suffered from chronic bronchiolitis.  My immune system, now unable to attack the colon, is creating inflammation in my lungs.  While not terminal, it is like having chronic pneumonia and treatments can only manage it but not cure it.  I suffer from a chronic productive cough and frequently develop infections. I have a port in my chest for IV antibiotics that can be delivered at home and around the clock. Normal peak flow (a pulmonary function indicator) for a woman my height/age is 430. I have found that I can still run long distance when I am at 300 or about 70% lung function. The last 6 years I have run half marathons with Team Challenge to benefit the CCFA.  Last season was particularly difficult, as I spent most of the season with a peak flow ~ 250.  Instead of running, I trained by hiking hills with my weight vest to build endurance.  On race day, I stayed up through the night inhaling medications to open my lungs and decrease inflammation.  Slowly through the wee hours of the night my peak flow climbed from 250-260-270 and finally as I left my hotel room 300.  I unhooked from my IV medications and joined my team. We ran through the rolling hills of the Napa vineyards, team-mates in orange and blue cheering the whole way.   I felt I had beat it again, this time one step at a time. It was an amazing run and I knew it would also be my last.

Now, I focus on climbing. I focus on my breath.  When you are straining to make a move or feel anxious, it is easy to hold your breath, but I focus on keeping calm and breathing evenly.  Technical climbing is actually a good but strenuous sport for someone with a lung disease; it is very slow and methodical. The staff of Stone Gardens have become my partners.  Each week I feel like my skills for overhangs and my aid techniques are getting more dialed, so I can relax.  Climbing in Yosemite is a stark contrast to the rolling hills and screaming team-mates of Napa. The Leaning Tower is 110 degrees steep and it couldn’t be more alone.  My guide from YMS will lead the climb and I will follow, just the two of us, alone on the wall.  My pulmonary function has continued to decline.  I get stronger physically to compensate for ~50% peak flow.  Although I have always carried my own haul bag (about 40+ lbs of climbing gear); this year another climber will have to carry it to the base of the route for me. But, once I leave the ground, I will beat this disease again, one breath at a time.

Thank you for your support,

Never, Never, Never Give Up,

Trina

 

 


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Support from the 36th Fighter Squadron: F-16 fighter pilots !

This weekend I received an email and donation from Brian of the 36th Fighter Squadron in South Korea. He flies F-16 Jets in the air force. How COOL Is that ? When you check out their video you will see just how cool these guys are see:
https://www.youtube.com/watch?v=HEN7VklmtUY


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Press Release Link

Press Release:

http://www.releasewire.com/press-releases/release-577279.htm

 

 


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What is Your Everest ?

stone gardens climb

Thanks to Stone Gardens for helping me to reach the Summit.

Dear Friends, Family and Patients,

Thank-you for the outpouring of both financial and emotional support.  It truly means so much to me to feel the push behind me.  I train every day for Yosemite and even on the early mornings, thinking of all of YOU who have supported the cause, makes it easy to get out there.

As a teenager, I spent months every year in the hospital.  I was in pretty serious condition and even when I was home from the hospital I was quite weak.  A family friend returned from Nepal following an attempt on Everest.  He was very close to reaching the summit; he turned around at the Hillary Step.  He promised when I came home from the hospital that I would get a slide show. He shared pictures of the mountain and stories of the expedition. When he left he gave me a signed photo of Mount Everest.  Every day I lay in bed and stared at Everest and dreamed of mountaineering.  It helped motivate me as I gained back my strength and weight. I felt a sense of camaraderie with the mountaineers who struggled, fought the elements and in the end whether reaching the summit or not had a deeper understanding of themselves and their climbing partners.

Perhaps I recognized the similarity between the mountaineers’ struggle and that of a patient.

It goes back to the original question to George Mallory “why do you climb mountains?”

Physical preparation and experience are only part of what gets you to the summit; success is achieved when the emotional desire to summit and to survive are inborn in that person.

Anyone with a serious illness has been there; staring upwards at the summit. Doctors and medications are only part of the cure, the emotional desire to survive and thrive are inborn.

Some time later in life, I realized that I wouldn’t actually climb The Everest, but in life, everyone climbs their own Everest, and succeeding in spite of IBD would be mine.

I continue to be treated for IBD and in the last 10 years I have been dealing with pulmonary complications of IBD.  It is quite rare and requires a doctor with a desire to succeed and a willingness to forge a new path. I found Dr.P2 who has managed the chronic lung infections and has assembled a team, willing to take on the challenge.  I didn’t know at the time and I don’t think it’s a coincidence, that Dr.P2 is also a mountaineer.

 

Dr.P2 has his own ambition.  He has dreams of climbing the Seven Summits.  This March, he leaves to attempt Everest (summit # 6). He is physically prepared, has the experience and mental desire. Now he just needs the conditions.

What is your Everest?

 

Thank you for your support,

Never, Never, Never Give Up,

Trina


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Alex Honnold

This is the definition of Awe-Inspiring:
http://www.nytimes.com/…/the-heart-stopping-climbs-of-alex-…

#

The master of climbing without ropes spends his life cheating death.
nytimes.com|By Daniel Duane

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CBS news article: 11 Things Not to say to a person with Crohn’s & Colitis

This was posted on CBS news page and I think it’s great !

11 Things not to say to a person with IBD:

1. You don’t look sick
2. I know what you’re going through
3. You’ve lost weight. You look great !
4. Come on try a bite.
5. You’re so lucky you can eat anything and not gain weight.
6. You must have a lot of stress in your life.
7. Can you wait until the next exit (while driving).
8. You’ve really put on weight.
9. Is it okay for you to eat that ?
10. Why are you so tired ?
11. You need to change your diet.

I have actually heard 10 out of 11 of these comments.
How many have you heard ?


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CCFA supported research

Dear Patient with IBD, Families affected by IBD and Practitioners treating IBD. As you may know, I’m working to raise money for IBD research through the CCFA. My agreement with the CCFA is that I will choose the research project that the money will be dedicated to. Please help me by writing some of your thoughts regarding the following studies of interest. This is a chance for your voice to be heard….
The CCFA is presently sponsoring over 50 important studies. I have narrowed it down to 5 studies of interest and over the next few months will be learning more about these studies:
1. The effect and mechanism of chinese herbal therapy on IBD
2. Pilot project for clinical research (vitamin D)
3. Autoimmunity, tolerance and the gut microbiota
4. Inflammation workshop
5. Complementary and Alternative Medicine utilization in Children w IBD

Thank you for your input,

Trina Seligman


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Dr.David Suskind: Seattle Children’s Hospital speaks on the SCD diet

What is the one question EVERY patient with IBD will ask ?
Doctor what can I do with my diet ?
Over the years, this has been the obvious question by patients and probably a bit of a nuisance to gastroenterologists.
Studying diet is inherently difficult as it is very hard to get strict adherence and monitor patients. In a dietary study, what markers of disease should be used to determine a positive response ?

 

Dr.David Suskind Associate Professor of Pediatrics the
Division of Gastroenterology, Hepatology and Nutrition at Seattle Children’s Hospital has been leading the way in answering this questions for patients everywhere. Dr.Suskind has been studying the SCD diet in the pediatric population and here is what he had to say:

 

1. What made you decide to look closer at the SCD diet ? What is the theory behind the diet ?

IBD is an immune dysregulation. That means the immune system is attacking the bowels because of a trigger. Evidence shows that the trigger is most likely the fecal microbiome. Diet is known to have a major impact on the fecal microbiome. I already knew that diet significantly impacted the treatment of IBD when we used exclusive enteral nutrition and this was further strengthened by the data from my work on fecal microbial transplant. I started working with a patient and his family who were extremely pro-active proponents of the SCD Diet. I did some extensive research into the SCD which ultimately made it an essential part of my work.

1b. What is the theory behind the diet ?

SCD is able to change the microbiome and remove the trigger i.e. the ‘bad bacteria’ from the intestines.

2. What were the results of the pilot study of the SCD diet ?

Our initial study on SCD examined how the diet worked for 7 Crohn’s patients on it without the use of immunosuppressive medication. All had active disease and all went into clinical remission on the diet. From this initial study, we have developed an active clinical and research program in the SCD.

3. Can you tell us about your future research goals ?

I have a number of studies currently ongoing in SCD. Our prospective study is examining patients with both UC and CD who initiate the diet. For these patients we are studying not only the clinical and nutritional effect of the diet but also the effect on the fecal microbiome. As the evidence mounts that this diet really works and the clinical date grows, more healthcare providers will feel comfortable offering the SCD as a treatment option for patients with IBD. You can learn more about the research being done on SCD and fecal microbial transplants at https://www.youtube.com/watch?v=1ZjTSNyoH3k


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It Takes Team-Work

Dear Friends, Family and Patients,

Thank you for your amazing support of the CCFA on behalf of my climb.  The response over the last month has been incredible.  Raising money to sponsor research means so much to me and in turn I am touched by your support of this fundraising drive.
Ulcerative Colitis and Crohn’s are both autoimmune diseases affecting the bowel. Together they are referred to as Inflammatory Bowel Disease (IBD).

The difficulty for patients dealing with autoimmune disease is that there is no end-point.  You will always have the disease.  There are treatments that improve quality of life, but there is no cure. I have been fortunate to put together a team of doctors (Gastroenterology, Pulmonology and Infectious Disease) that manage my care. They work closely together and work with me to achieve excellence in my care.

It takes a mental toughness and resilience to deal with any autoimmune disease. To know that the summit is always in view, but never in reach.

For me, Climbing has a lot of similarity to autoimmune disease.
The preparation for months in advance to get your body strong and skill level ready for the climb is like working with my team of doctors to establish a tough plan to overcome the symptoms of disease.
The Stone Gardens climbing gym has stepped up to the challenge of supporting my climbing efforts.  The staff at the gym, Bruce, Brad and Joe have been supporting my efforts each time I work out. Everyone can see the bigger picture of what I am trying to achieve by climbing a rock face.  Each week, Jimmy and I work on technical problems on the climbing wall at the gym, similar to what I will face on The Leaning Tower; problem solving and overcoming the challenges.  It has been an amazing Team Approach from Stone Gardens and I am so grateful.  Without them, this fundraising would not be possible.  Important research will benefit from their efforts and support of this climb.

Photos include:
Jumaring at the gym (a technique for climbing the rope when cleaning the protection from the wall)
Climbing at the gym.
Sincerely,
Trina Seligman, N.D.
Never, never, never give up,Trina Seligman, N.D.


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Libby Sauter: Women’s El Cap Speed Record: Facebook Post

“Everyone has their own reasons for loving to climb. I especially enjoy watching people endeavoring to achieve something beyond just the usual (but still awesome) ‘summit fever’! Makes me think twice before saying, “I’d love to BUT…” Good luck Trina Seligman

 


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Team Work at Stone Gardens

15 weeks to Yosemite ! Holding on for a CURE ! Can you help ?? Donate or SHARE to find a cure.
Training includes: 4 days a week of climbing, 1 day of jumaring, 2-3 days a week of weights and 1 hike with my weight vest.
The climb includes a steep approach with a haul bag (likely 30-40 lbs due to water, rope, heavy climbing gear. Food is light), 3 days and 2 nights on the wall, followed by a descent. Thanks to Bruce, Brad and Joe at Stone Gardens it makes it easy to feel motivated to get the work in.
Thank you for your support from the 1.4 million Americans with Inflammatory Bowel Disease.

'15 weeks to Yosemite !  Holding on for a CURE !  Can you help ?? Donate or SHARE to find a cure.<br />
Training includes: 4 days a week of climbing, 1 day of jumaring, 2-3 days a week of weights and 1 hike with my weight vest.<br />
The climb includes a steep approach with a haul bag (likely 30-40 lbs due to water, rope, heavy climbing gear.  Food is light), 3 days and 2 nights on the wall, followed by a descent. Thanks to Bruce, Brad and Joe at Stone Gardens it makes it easy to feel motivated to get the work in.<br />
Thank you for your support from the 1.4 million Americans with Inflammatory Bowel Disease.'

·

·

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Jugging at Stone Gardens

Jugging at Stone Gardens.
Thanks Jimmy for meeting me so early in the morning to train on overhangs.
16 weeks to Yosemite……
PLEASE DONATE OR SHARE to help find a CURE for IBD.
Thanks Ionescu Photography for the photos.

Jugging at Stone Gardens.  
Thanks Jimmy for meeting me so early in the morning to train on overhangs.
16 weeks to Yosemite......
PLEASE DONATE OR SHARE to help find a CURE for IBD.
Thanks Ionescu Photography for the photos.

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For Canadian Donors

Reference: www.globalgiving.org/canadian_donation.html

 

Tax Deductibility for Canadian Citizens

Only under limited circumstances can a Canadian take a deduction for a contribution to a U.S.

charity. There is currently a Canada/US treaty that provides for deductibility for Canadians

making contributions to U.S.-based organizations. In general, a Canadian may take a deduction

on their Canadian income tax return for a contribution to a U.S. charity only if they have U.S.

source income, and only up to 75% of that U.S. source income.

For example, if a Canadian does not have U.S. source income and donates to a U.S. charity, no

deduction is available. If a Canadian has $10,000 in U.S. source income and donates $1,000 to a

U.S. charity, the contribution may be fully deductible, since he/she has U.S. source income, and

the amount contributed is less than $7,500. Consult with an accountant or the Canada Revenue

Agency for more information.


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Dr.Pottinger; infectious disease. The immunocompromised patient.

For those who have IBD, or For those who care for someone with IBD.

We are in the height of cold and flu season, as well as an outbreak of measles and pertussis so there has been a lot of chatter on the newsgroups about staying healthy and vaccinations.
This is of particular concern for IBD patients, so many of which are on immune-suppressive medications.
I thought it was best to ask an expert about staying healthy while immune-suppressed and here’s what Dr.Pottinger has to say.

Dr.Pottinger is an associate Professor in the Infectious Disease Divison at the university of WA and associate Director of training in Infectious disease Program. (see link for Dr.Pottinger bio)

http://depts.washington.edu/daid/directory/pottinger.html

1. What suggestions do you have for patients that are immune compromised to stay healthy and reduce infection risk ?
Dr. Seligman, thanks for asking. This is an important issue, and one that is not discussed enough in doctors’ offices! The immune system is incredible, but when it is reduced—either on purpose to treat an autoimmune disease, or because of another disease—we need to work a little harder to avoid infections. Most things are quite simple: FIRST, take care of yourself. No smoking, no drinking alcohol to excess, get plenty of sleep and aerobic exercise, avoid folks who are visibly sick, keep your hands clean (with soap and water or alcohol-based gel), attend to any cuts or scrapes with soap & water right away, and get whatever vaccinations your physician recommends. Oh, and because we are in Washington State, I must add a warning about smoking THC: It is legal here, but potentially dangerous for immunocompromised patients, because the leaves often harbor mold that can be inhaled and cause a terrible lung or sinus infection…. Sorry guys! SECOND, ask others to take care of themselves, too… healthy friends and family will be less likely to spread infection to you. They should stay away if they are ill with respiratory or GI symptoms. And, they should get their vaccinations on time. Immunosuppressed patients may not respond to vaccines with a favorable antibody level, so they are dependent on others to form a “ring of protection” around them. The current outbreaks of measles and pertussis are examples of what can happen when people neglect their own health by skipping vaccinations. This puts all of us at risk… especially the immuosuppressed, who may not have a good enough vaccine response to ward off these potentially fatal infections.

2. When an immune compromised patient gets an infection how is this more complicated for you to manage ?
This can be a very, very big deal. First, our antibiotics are usually only effective when the patient has a healthy immune system to help fight the infection. Antibiotics for bacterial infections can be life-saving, but they still require the body’s own immune system to clear the infection. Drugs alone will not do the trick! So, when the immune system is reduced, we may need to treat people with bigger doses for longer periods of time… and this may cause more toxicity or side effects. Second, we do not have effective treatment for all infectious diseases! Yes, you heard me right: We lack specific therapy for many respiratory viral infections, from the common cold to certain strains of flu. Even “garden-variety” infections can be extremely dangerous in immunocompromised patients. To make things worse, some folks delay a trip to the doctor because they may not recognize what is happening until way too late… if these patients seek care early, we have a fighting chance! If not, it can be really tough to turn the tide.

3. Is there anything that the community can do to help patients that are immune compromised ?
First, they should take care of themselves so they are less likely to spread infections to the immunocompromised. Common sense, healthy lifestyles, and vaccines according to their physician’s recommendation. Second, we are in the midst of a crisis: bacteria are evolving to become more and more resistant to our antibiotics… so, if you love someone who is extra vulnerable to infections, please make your voice heard and VOTE for congressional candidates who will fund scientific medical research. We MUST make progress to help these patients, and currently our funding is inadequate! Unless the government hears from us, I fear delays will lead to more death and misery for the immunocompromised. Your voice matters… make it count!

"ForWe are in the height of cold and flu season, as well as an outbreak of measles and pertussis so there has been a lot of chatter on the newsgroups about staying healthy and vaccinations.
This is of particular concern for IBD patients, so many of which are on immune-suppressive medications.
I thought it was best to ask an expert about staying healthy while immune-suppressed and here’s what Dr.Pottinger has to say.Dr.Pottinger is an associate Professor in the Infectious Disease Divison at the university of WA and associate Director of training in Infectious disease Program. (see link for Dr.Pottinger bio)

http://depts.washington.edu/daid/directory/pottinger.html

1. What suggestions do you have for patients that are immune compromised to stay healthy and reduce infection risk ?
Dr. Seligman, thanks for asking. This is an important issue, and one that is not discussed enough in doctors’ offices! The immune system is incredible, but when it is reduced—either on purpose to treat an autoimmune disease, or because of another disease—we need to work a little harder to avoid infections. Most things are quite simple: FIRST, take care of yourself. No smoking, no drinking alcohol to excess, get plenty of sleep and aerobic exercise, avoid folks who are visibly sick, keep your hands clean (with soap and water or alcohol-based gel), attend to any cuts or scrapes with soap & water right away, and get whatever vaccinations your physician recommends. Oh, and because we are in Washington State, I must add a warning about smoking THC: It is legal here, but potentially dangerous for immunocompromised patients, because the leaves often harbor mold that can be inhaled and cause a terrible lung or sinus infection…. Sorry guys! SECOND, ask others to take care of themselves, too… healthy friends and family will be less likely to spread infection to you. They should stay away if they are ill with respiratory or GI symptoms. And, they should get their vaccinations on time. Immunosuppressed patients may not respond to vaccines with a favorable antibody level, so they are dependent on others to form a “ring of protection” around them. The current outbreaks of measles and pertussis are examples of what can happen when people neglect their own health by skipping vaccinations. This puts all of us at risk… especially the immuosuppressed, who may not have a good enough vaccine response to ward off these potentially fatal infections.

2. When an immune compromised patient gets an infection how is this more complicated for you to manage ?
This can be a very, very big deal. First, our antibiotics are usually only effective when the patient has a healthy immune system to help fight the infection. Antibiotics for bacterial infections can be life-saving, but they still require the body’s own immune system to clear the infection. Drugs alone will not do the trick! So, when the immune system is reduced, we may need to treat people with bigger doses for longer periods of time… and this may cause more toxicity or side effects. Second, we do not have effective treatment for all infectious diseases! Yes, you heard me right: We lack specific therapy for many respiratory viral infections, from the common cold to certain strains of flu. Even “garden-variety” infections can be extremely dangerous in immunocompromised patients. To make things worse, some folks delay a trip to the doctor because they may not recognize what is happening until way too late… if these patients seek care early, we have a fighting chance! If not, it can be really tough to turn the tide.

3. Is there anything that the community can do to help patients that are immune compromised ?
First, they should take care of themselves so they are less likely to spread infections to the immunocompromised. Common sense, healthy lifestyles, and vaccines according to their physician’s recommendation. Second, we are in the midst of a crisis: bacteria are evolving to become more and more resistant to our antibiotics… so, if you love someone who is extra vulnerable to infections, please make your voice heard and VOTE for congressional candidates who will fund scientific medical research. We MUST make progress to help these patients, and currently our funding is inadequate! Unless the government hears from us, I fear delays will lead to more death and misery for the immunocompromised. Your voice matters… make it count!” width=”472″ height=”315″ />

 


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Seahawks lose the SuperBowl. Russell Wilson’s still a Champion.

“Any day you’re not in the hospital is a good one.” You can quote me on that. As I sat here feeling bad for our Seahawks and wondering how they were doing the day after I realized there was a bigger picture. How was it that Russell Wilson was able within minutes to congratulate Tom Brady and the Patriots on a great game and stand in front of the cameras with such poise ? What you may not know about Russell Wilson is that he goes to Seattle Children’s Hospital one day a week to cheer up the kids in the hospital. I think he in return has learned that there are bigger fights to fight than a football game. Maybe this time, the kids are cheering Russell up. He’s still a champion in my books.

"Any day you're not in the hospital is a good one."  You can quote me on that.  As I sat here feeling bad for our Seahawks and wondering how they were doing the day after I realized there was a bigger picture.  How was it that Russell Wilson was able within minutes to congratulate Tom Brady and the Patriots on a great game and stand in front of the cameras with such poise ?  What you may not know about Russell Wilson is that he goes to Seattle Children's Hospital one day a week to cheer up the kids in the hospital.  I think he in return has learned that there are bigger fights to fight than a football game.  Maybe this time, the kids are cheering Russell up.  He's still a champion in my books.

 


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Never, Never, Never Give Up

To my friends & family who continue to support my cause: Never Give Up.
To my doctors (Paul Pottinger, James Lord and Josh Benditt): Never Give UP.
To the researchers studying IBD: Never Give Up.
To the Seattle Seahawks tomorrow: Never Give Up.

and to all the patients with IBD: Never, Never, Never Give Up !

To my friends & family who continue to support my cause: Never Give Up.<br />
To my doctors (Paul Pottinger, James Lord and Josh Benditt): Never Give UP.<br />
To the researchers studying IBD: Never Give Up.<br />
To the Seattle Seahawks tomorrow: Never Give Up.</p>
<p>and to all the patients with IBD: Never, Never, Never Give Up !

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Big Wall Climbing

Climbing a Big Wall. There are different styles of climbing: bouldering, top-roping, Sport, free-climbing (“Trad” or traditional), free-soloing, Speed and Aid climbing. No wonder everyone was confused when they were watching Caldwell and Jorgeson Free Climb the Dawn wall. The Leaning Tower, although not the highest climb, is highly technical due to it’s continuous overhang. It will be a combination of Trad and Aid climbing. So, I need to train and be strong at both. In Aid climbing, the “Second” or second person up the route, cleans the gear. As a result, there is time when you hang out in space and climb a free-hanging rope. This is not my picture, but a picture of The Leaning Tower, with a Second, jumaring the rope to clean the route. Lets find a CURE already ! Then I can just hang out at Starbucks !

Climbing a Big Wall.  There are different styles of climbing: bouldering, top-roping, Sport, free-climbing ("Trad" or traditional), free-soloing, Speed and Aid climbing.  No wonder everyone was confused when they were watching Caldwell and Jorgeson Free Climb the Dawn wall.  The Leaning Tower, although not the highest climb, is highly technical due to it's continuous overhang.  It will be a combination of Trad and Aid climbing.  So, I need to train and be strong at both.  In Aid climbing, the "Second" or second person up the route, cleans the gear.  As a result, there is time when you hang out in space and climb a free-hanging rope.  This is not my picture, but a picture of The Leaning Tower, with a Second, jumaring the rope to clean the route.  Lets find a CURE already !  Then I can just hang out at Starbucks !

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Another reason we need a cure

I am hoping to spread awareness about something that has become increasingly more prevalent in my life within the past few months. I know it’s long, but please read my story and then Like, Share, and Comment on this post in order to inform the world about a disease that affects over 5 million people worldwide and is rarely talked about. </p><br />
<p>My name is Chayla Fisher. I’m 16. When I was 8 months old I was diagnosed with called Ulcerative Colitis (UC), an autoimmune disorder in which my immune system mistakes food, bacteria, and other materials in the intestine for foreign or invading substances and when this happens, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation and ulcerations. My entire life has been filled with severe pain, discomfort, fatigue, increased frequency and urgency of bowel movements, bloody stools, and other debilitating symptoms. In addition, I have always had to watch my diet, control my stress levels, and take numerous harsh medications in order to reduce my symptoms.</p><br />
<p>I’ve spent the majority of my life hiding in the shadow of my disease, not understanding what was going on with me and not seeking support for dealing with it. I didn’t even know something was “wrong” with me until I was 14 and I had to take a medication called prednisone to make my symptoms better. Although this helped, it also had side effects including weight gain and bone pain. I gained 60 pounds in one month, and with that I lost all of my self-confidence. That year I also found out about Team Challenge, a half-marathon training program that benefits the CCFA. A couple months later I ran my 1st half-marathon in Kona, Hawaii. Since then, I have run 3 half-marathons and raised over $14,000 since. </p><br />
<p>Although I have been able to fight off the symptoms of my disease with mild drugs and diets for most my life, these past 10 months have been a horrible downward spiral. In May of 2014 my symptoms started up again, but I ignored them in order to finish my sophomore year of high school and continue playing soccer. Since then, I have had 3 hospital stays and tried numerous medications, all with horrible side effects. The worst being an antiTNF drug called Gulimimab (also a chemotherapy drug, used for treating cancer). When I was driving home from my 2nd hospital stay, I ran my hand through my hair and a clump came out. I watched my hair slowly fall out clump by clump until I couldn’t take it anymore and I shaved it off. </p><br />
<p> I am writing this in the hospital bed that I have been laying in for over a month, hoping every day that they will find a cure other than removing your colon. I am on so many medications I can’t keep track. I’m on my last resort med called Entyvio; it has been approved for adults but not for children, so I am scared that something might happen. I’m building a tolerance to the pain meds and am still in so much pain. It’s hard not to cry from all of this.</p><br />
<p>No, I don’t have cancer. No, I’m not dying. No, I just have to take the medications that cancer patients do and suffer in pain for months in the hospital like cancer patients do. But I don’t get the compassion that cancer patients do. My disease does not get the publicity that cancer does. Most people have never even heard about Ulcerative Colitis. I am not the only one that has a story like this. UC is not a disease to be forgotten about, laughed about, or embarrassed about. It is a disease to be talked about. </p><br />
<p>Even though l lost my hair, have missed over 3 months of my Junior year of high school, and have been stuck in the hospital for 35 days, I am trying to keep a smile on my face. I missed Christmas and New Years. I haven't felt well in 10 months. I almost forget what it feels like to feel normal. But I know this isn't forever. I am a fighter and I will not lose this battle.
Chayla spoke in Napa, where we ran a half-marathon to benefit the CCFA. It is amazing how quickly this disease can knock you down from strength and endurance to a bed. She’s an amazing young woman ! It is because of stories like this that I feel so strongly about finding a CURE. Chayla –I hope we find that cure for you soon : stay strong. Thank you to everyone who has donated to C4now and for those that haven’t yet –here’s the real life story of Ulcerative Colitis, please take the time to read it.

I am hoping to spread awareness about something that has become increasingly more prevalent in my life within the past few months. I know it’s long, but please read my story and then Like, Share, and Comment on this post in order to inform the world about a disease that affects over 5 million people worldwide and is rarely talked about.

My name is Chayla Fisher. I’m 16. When I was 8 months old I was diagnosed with called Ulcerative Colitis (UC), an autoimmune disorder in which my immune system mistakes food, bacteria, and other materials in the intestine for foreign or invading substances and when this happens, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation and ulcerations. My entire life has been filled with severe pain, discomfort, fatigue, increased frequency

and urgency of bowel movements, bloody stools, and other debilitating symptoms. In addition, I have always had to watch my diet, control my stress levels, and take numerous harsh medications in order to reduce my symptoms.

I’ve spent the majority of my life hiding in the shadow of my disease, not understanding what was going on with me and not seeking support for dealing with it. I didn’t even know something was “wrong” with me until I was 14 and I had to take a medication called prednisone to make my symptoms better. Although this helped, it also had side effects including weight gain and bone pain. I gained 60 pounds in one month, and with that I lost all of my self-confidence. That year I also found out about Team Challenge, a half-marathon training program that benefits the CCFA. A couple months later I ran my 1st half-marathon in Kona, Hawaii. Since then, I have run 3 half-marathons and raised over $14,000 since.

Although I have been able to fight off the symptoms of my disease with mild drugs and diets for most my life, these past 10 months have been a horrible downward spiral. In May of 2014 my symptoms started up again, but I ignored them in order to finish my sophomore year of high school and continue playing soccer. Since then, I have had 3 hospital stays and tried numerous medications, all with horrible side effects. The worst being an antiTNF drug called Gulimimab (also a chemotherapy drug, used for treating cancer). When I was driving home from my 2nd hospital stay, I ran my hand through my hair and a clump came out. I watched my hair slowly fall out clump by clump until I couldn’t take it anymore and I shaved it off.

I am writing this in the hospital bed that I have been laying in for over a month, hoping every day that they will find a cure other than removing your colon. I am on so many medications I can’t keep track. I’m on my last resort med called Entyvio; it has been approved for adults but not for children, so I am scared that something might happen. I’m building a tolerance to the pain meds and am still in so much pain. It’s hard not to cry from all of this.

No, I don’t have cancer. No, I’m not dying. No, I just have to take the medications that cancer patients do and suffer in pain for months in the hospital like cancer patients do. But I don’t get the compassion that cancer patients do. My disease does not get the publicity that cancer does. Most people have never even heard about Ulcerative Colitis. I am not the only one that has a story like this. UC is not a disease to be forgotten about, laughed about, or embarrassed about. It is a disease to be talked about.

Even though l lost my hair, have missed over 3 months of my Junior year of high school, and have been stuck in the hospital for 35 days, I am trying to keep a smile on my face. I missed Christmas and New Years. I haven’t felt well in 10 months. I almost forget what it feels like to feel normal. But I know this isn’t forever. I am a fighter and I will not lose this battle.


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19 weeks to Yosemite

19 weeks to Yosemite.  Training hard.  Jimmy at Stone Gardens helped a lot this (early) morning with overhangs.  Thanks !

288 people reached

 


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19 weeks to Yosemite

19 weeks to Yosemite. Training hard. Jimmy at Stone Gardens helped a lot this (early) morning with overhangs. Thanks !climb


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Getting Ready ….

Hi Friends, just giving you an update on getting ready for “fundraising season”. First met with the CCFA to pitch the idea of a climb for charity. They loved it : whoop whoop ! Met with Dr.Lord at Benaroya Research Institute to learn more about the incredible research he is doing. Wow, what dedication ! We just may find a cure with researchers like Dr.Lord doing the work. Met with Brad the manager of Stone Gardens and they have generously come on board as sponsor. Now working on facebook and the website. Please “like” and “share” this facebook page, it is essential for my success in fundraising ! Thanks for your support !


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 Make(1)

Fundraising Goal

#FF0000 Raised $2,000 towards the $35,000 target.

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