JRA – 6 yrs later, she’s climbing to the roof of Africa

[mom4]

Hi Everyone,

I know it’s been a few years since I last posted an update on my daughter
Rachel. Many of you who are currently on this message board, may not know her
story (the old posts are gone) so I’ll append it to this update.

2004 was the year that my 14yo daughter’s dreams were crushed by JRA. She
started high school unable to walk up a flight of stairs or carry a textbook to
class. The prognosis from traditional docs was grim (to say the least). Then we
found AP and she really and truly started on her journey back.

2010 was the year that my 20yo college junior decided she wasn’t content with
studying environmental issues at her comfortable campus. Instead, she packed up
and went to East Africa where, for 4 months, she’s conducted field research (in
the bush with the wildlife, bugs & very primitive living) in conditions that
pushed the fittest person to their limits, and often beyond. She has hiked
countless miles, carried her weight in gear, conducted a vegetation/erosion
survey that required patience & physical endurance, and even tagged a lion or
two. The students finally completed work that has promise to make survival
possible for many people. It would seem like this would be the ending to this
part of her story, but…

It started with her realization that she wasn’t going to be back to do the
Arthritis Jingle Bell Run this year. Then, she decided to organize a benefit
event to support children’s health issues in her host countries instead. So that
is when ‘Climbing for a Cause’ was born to support UNICEF’s children’s health in
Tanzania/Kenya. Yesterday morning, she and 6 teammates began climbing to the
‘Roof of Africa’. It’s 19,231ft to the summit of Mt. Kilimanjaro, the highest
mountain in Africa & 4th highest of the ‘seven summits’. They are climbing the
Machame route (the shortest but also most challenging). Starting into the
rainforest this morning and will climb to 12,000ft by tomorrow. Altitude
sickness is their biggest challenge, followed by wind/ice/snow/extreme cold near
the summit (snakes & lions don’t phase them anymore). The statistics are not
good – a large percentage of climbers cannot adapt to the extreme altitude. Last
week, Martina Navratilova had to be carried down the mountain & a third of that
team of 27 athletes didn’t make the summit. Shortly before starting the climb
yesterday, Rachel posted this status to her Facebook:

“everyone has mountains to climb, sometimes those mountains are in our
mind…true triumph is about trying whatever the result” going to the roof of
africa tomorrow. -15 at the top and all kinds of toughness going up.

6 years ago, a flight of steps and walking down the hall between classes was as
daunting as the 19,231ft climb and 100km trek of Kilimanjaro. Rachel’s climbing
to benefit UNICEF this week but she says that her message is dedicated to all of
you. Every step of the climb will be for the fight against JRA/RA. She continues
her fight everyday & has been on AP the whole way. Please keep them in your
thoughts and prayers this week.

btw – she no longer has rf+ of elevated esr and it’s been normal for several years

From July 15, 2006: JRA – smiles on her journey back

I thought this update might give a boost to everyone on a road back
(especially Cheryl’s Jess who is on a road very much like Rachel).

So it was 2004 and she was at her first Olympic trials (though at
14yrs probably not a real contender) and the pain in her feet, wrists
and hands were becoming an ever bigger problem. Then July 2004 at US
Nationals, she took to crutches between competitions. A world
reknowned pediatric rheumatology center said she was no longer an
athlete and would be in a wheelchair by summer 2005. She started high
school burdened with a grim prognosis and with directions to scale
down her dreams and goals… not just athletic ones but academic,
social, everyday life. We were also told to plan on attending the
annual AJOA conferences.

We found the Road Back in Dec 2004 and started a remarkable journey.
Simple things like the ability to walk between classes and take the
stairs instead of a handicapped elevator returned by year end. She
took the toughest classes and made A’s. Had a very busy life with many
extracurriculars. By April 2005, she had not only returned to
competition but had requalified for nationals. She was definitely on
the road back. We did not feel the need to go to the AJOA in 2005.

I posted ‘JRA and AP a year later’ in Jan 2006. That was when we
realized that this must be a remission. Since then, the road has only
become smoother. She doesn’t take Minocin 200mg everyday but now takes
it every other day. She doesn’t hurt if NSAIDs are skipped a day or
two. But since she’s in continuous athletic training, she is careful
to prevent and treat any signs of inflammation from injury or overuse.
She is ever so careful about her diet, supplements and vitamins,
exercise and training. The cartilage in the damaged joints has
regenerated, range of motion has returned to normal, no more pain.
(But she can still predict an approaching storm better than the
Weather channel with her joints!)

So she boarded a plane for Atlanta today and we noted that the AJOA
conference is being held there this week. I wondered how many JRA kids
she might walk past in baggage claim. But this was a day for smiles
instead of a time to attend a conference & learn how to manage a
lifetime of disability. Because as the AJOA conference winds down,
across town another group is gearing up. It’s time to train for the
world championships with the Olympic coach, 2004 medalists and
national team members from around the world. Now, the dream for 2008
may be impossible and even meeting Jess & Cheryl at the 2012 games a
very long shot, but for today, right now, there’s one happy kid who’s
journey has taken her to a place where she’s on par with the best.
She’s an athlete again.

From July 28, 2006: JRA – Doctor said ‘miracle’

Hi Everyone,

A couple of weeks ago I posted our update in ‘JRA – smiles on her
journey back’. Rach made the trip to Atlanta (not to attend the
juvenile arthritis conference) but to ‘endure’ intensive athletic
training (aka. world championship bootcamp).

So did she survive? Amazingly, yes! The first few days I heard from
her several times a day… it’s awful!…I’ll never survive!… my
feet are killing me! Do you think I’m flaring?… can I just quit?…
She didn’t quit! And when I didn’t hear back from her for a few more
days, I worried.

But then she finally called late one night. She was hiking back to the
dorms with teammates having just walked miles to a store for midnight
snacks. Sorry she hadn’t called. Up at 6am and nonstop training until
dinner at 7pm. The food is terrible. Evenings they have a few hours to
go places (by foot). I ask – What about your plantar fascitis? What
about your knee, fingers, wrist, elbows? What’s flaring?! Oh, I feel
fine now. A few days into the most physically demanding thing she ever
tried, all the aches & pains went away. Something about getting used
to the training & stretching everything out… No pain. No swelling.
No JRA flares. She was doing fingertip pushups again. Walking 5-6
miles a night for fun after a grueling day of practice.

She said the experience had helped her make peace with her Olympic
dream and the past disappointments from JRA’s setbacks. She trained
with the best athletes and coaches in the world. She geared up
everyday next to her idol (an Olympic medalist) & best yet, when she
scored the win in a hotly contested dodgeball tournament her Olympic
idol led the rest of the team in a rush to high five & jump on her in
a screaming heap. One day she realized that the Russian national coach
was giving her extra attention, acknowledging her performance and even
liked her. She said that she discovered that she was finally ‘back’.
Able to compete without a JRA handicap. The decision to pursue the
Olympics or not is no longer determined by her disease. It will be the
normal questions of what sacrifices she is willing to make & how much
of her life gets put on hold to get to 2012. She’s not ready to make
that decision yet. For now, she’ll get ready for this year’s
competition & look forward to college recruiting next.

It just so happens that Rach’s lifelong pediatrician is my close
friend (& her sister’s godmother). She is also past president of a
medical examiner’s board, the longest sitting member on the same
board, is on the board of 2 (or 3) medical schools, sits on this, that
& the other committees, is overall a very influential physician (met
with the governor one night, then the next day was interviewing the
candidate for medical director of the group of 3 children’s hospitals
for a certain city). She doesn’t profess to know rheumatology but
after treating kids in one of the busiest practices I know of for 30
years, I think she has seen her share of JRA.

Rach wanted to drop in for a surprise visit before coming home. She
was shocked! Overwhelmed maybe? Taken aback? She was so happy (tears
in her eyes happy)! She said over & over “It’s a miracle! You’re my
miracle child! Who would ever believe it but you’re living proof!” She
looked at the thumb that had regrown cartilage & healed & shook her
head & said again that she was all the evidence she needed. We talked
some about AP & Dr. McPherson Brown (who she already knew about) & the
probable relationship of the glucosamine, chondroitin, MSM, etc to the
new cartilage growth. She said Rach’s recovery was beyond anything she
had ever thought possible. She had prayed everyday for Rach, worried
and wondered how long she’d be able to walk, knew the prognosis was
bad. She acknowledged that the traditional treatment options are
dangerous and that minocycline is safe & well, just so simple. She
asked for more info on AP, current protocols, studies, doctors who
know it, case histories.

I asked her why so many docs are still hostile to alternatives in the
face of mounting evidence in their favor. She said that a good doctor
should be open to safer, alternative treatments and be grateful to see
living proof of its benefit. Sad to say, she knows way too many
colleagues who are blind on that point. Too many unduly influenced by
big pharma marketing & incentives, grants or just fear of deviating
from the status quo. There’s hope that there will be change &
encouraged by the new medical specialty in Complementary & Alternative
Medicine at a few medical schools. But she has seen Rach and she’s all
the proof she needs to believe there’s hope for a better treatment for
JRA.

I know some of you have asked that I post Rach’s story more
prominently on the site. I’ve talked to her about it and she’s not
quite ready to ‘go public’ but is getting there. She has kept her JRA
secret from most of the people in her sport. She doesn’t want the
disease to have power over her in that refuge. Only her personal coach
and a teammate/doc knows the details. As her confidence in beating the
disease growing, she’s getting closer to putting a face on her story.

[Author]

Posts