Wednesday, October 1, 2014

Grace Under Pressure


It’s been a couple of years since the blog has been updated, so I’ll try and summarize what’s been going on with Kelley and what she’s doing now….

First, the good news! Kelley is home in Folsom, her pain is down, averaging 6-7 on the 1-10 pain scale, w/occasional spikes to 9. While that is high, she has many days where her pain level is tolerable and she can get ‘out & about’. Overall, her pain is considerably better than where it’s been of late. Her immediate goal is to get her pain down to an average level of 5-6. In addition to Western medicine, she is exploring various alternative care treatments including acupuncture, mindfulness, hypnosis, and a pain coaching program designed to teach her tools to help her reduce the power and impact of the pain. A new fundraiser is underway to help Kelley with the cost of these treatments:  http://gfwd.at/1pYSGDT. So far, we’ve generated donations of $7,775! (Some donations were not accounted for on the site, so it shows $5,575 to date). 

Despite some incredibly hard times and intense emotions this past summer in particular, Kelley’s overall view is hopeful and optimistic. She demonstrates a level of courage, commitment and tenacity that continues to amaze and inspire me. I am also struck by her compassion and caring for others in the midst of unrelenting pain. Whether it’s on a Class V river or a Class V section of life, Kelley epitomizes the idea of “Grace Under Pressure”.

Some background she asked me to share: The past couple of years have been quite challenging for Kelley due to the intense level of pain she experiences on a fairly constant basis. In 2012 she received a spinal cord stimulator, a device that exerts pulsed electrical signals to the spinal cord with the goal of reducing chronic pain. The stimulator was unsuccessful and she had it removed in 2013. The second device, called a “pain pump”, delivered drugs directly to her spinal cord via an implanted catheter & pump. She had surgery to implant this device last April . She spent the summer doing weekly visits to the Napa Pain Institute where her doctor and team worked to regulate/balance her medication levels.  In July, Kelley experienced a level of pain she described as “living Hell”, and was hospitalized.  What Kelley didn’t know at that time was that she had developed shingles, which was creating some of that intense pain (and has since been treated). Here is her Facebook comment from July 25th…

Grateful for All Your > prayers ~ love ~ hugs ~ pure vida ~ healing thoughts ~ aloha ~ Mwah ~ amore ~ well wishes ~ hope for relief ~ boosting for pain free life. Life? Sometimes wonder what it is that I did in my life to deserve all this pain. Have you ever done that? Anyhow, out of the hospital after 8 crazy days trying to get a hold on this nerve pain (for 7yrs/9mo)…haven't given up yet, but this last time challenged me, got me wondering about life, and worth. The doctor in Napa didn't believe the level of pain I was going through. It felt like I was alone. The worst pain in my life….The pain was "living hell". I've only said that once, it was after running Clavey Falls on the T…and I was really joking to the video camera…huh Bill? Those were the days, days on the Rivers I will never forget. ) God I love the River, it made me who I am ...which reminds: stay tough, and keep that line in my mind…and remember that I am NEVER alone, and that I have a family and village of brothers and sisters…thanks and much Love to You ALL, kelley

In August, Kelley’s doctor performed a 2nd surgery to attempt to lengthen the implanted catheter & more effectively deliver the pain meds. The surgery was unsuccessful as the lesion blocked the catheter from upward progress. Kelley was released and went home but shortly afterward developed a fever, severe headache, and a swollen leg. After 2 trips to the ER, she learned she had contracted spinal meningitis from an infection from the pain pump. Kelley was transferred to Napa, the pain pump removed, and Kelley was given antibiotics and IV pain meds. Her pain averaged a level 8 for several weeks, occasionally spiking to a 9. After a few weeks she was transferred to an acute care facility in Folsom, and then finally – 1 month after being admitted to the ER – she was released.

Kelley is back home in Folsom, living with her mom (and Wilbur & Dudley). Her progress in the past 2 weeks is amazing – while still in pain, she’s been out & about and is enjoying spending time outside in the sun while continuing her quest to enjoy life, one day at a time.

P.S. Kelley continues to receive an incredible level of support from her family and long-standing relationships with friends like Sue, Julie, Beth, Rhonda and so many others. I’m honored to be able to help by spearheading an ‘alternative care pain management plan’ for Kelley, researching practitioners and modalities to complement the Western medicine approach. Kelley has asked me to manage this effort so she is not overwhelmed with information. If you have any “alternative-based” suggestions, please drop me an email or call me. Thanks…Janet 530-919-2822; jmaineri@gmail.com

Kelley’s address is 808 Kelley Way, Folsom, CA 95630. Her phone & email are the same, as shown on the top of the blog.

Saturday, December 31, 2011

Happy New Year













Well its the end of another year, and I had the pleasure of spending some quality time during the last of it down in Southern California with Kelley, Leona, Wilbur and Dudley. Between the fact there is no snow in tahoe, unbelievably cheap fares with Southwest Airlines, and the many attractions of San Diego County,it's been easy to contrive reasons for popping down to visit. In case some of you aren't familiar with the area Kelley is living in during the winter to pursue her therapy at Project Walk, it is very close to a number of high quality beach destinations including San Onefre, Carlsbad, Encinitas, and Solano Beach.


These last three are charming little beachside communities, cute and laid back (at least in the winter). I have been getting very into stand-up paddle surfing lately , so have scoped out the breaks, camping, and SUP rental shops, and there are some GREAT options. Julie Munger and I visited with Kelley in early December and had some great fun on some small waves, and great weather. We also met a parapalegic rock star named Jeremy in the parking lot. We got there when he was done, so didn't see him surf, but watching him scoot himself up the beach 200 plus feet unassisted to his car was inspiring on its own.



Julie and I also had a some quality time with Kelley. Her nerve pain is still a constant and sometime brutal fact of life. But she had a blessed reprieve for a little while during our visit, and we spent almost 3 hours paddling and hanging out on the beach in the Carslbad Lagoon. Some great bird watching, and I was amazed at how strong Kelley paddled. She went pretty hard for almost 1.5 hours. The next day after I left Julie took Kelley to REINS, a non-profit facility that enables disabled individuals to horse back ride. Julie got her signed up in the program, so hopefully she will able to do that soon, its less than an .5 hour from her house. Having spent the last few months around my partner Lisa's new horse, I have been reminded how calming and grounding being around these beautiful animals can be.

Then I went back down the week before Xmas with my friend Jennifer Yates in her Dolphin Camper, and our doggies to camp for a few days at San Elijo state beach in Encinitas. This campground was great, and just had to trot down the stairs to get to the surf break. Kelleys nerve pain was more intense during this visit, so we didn't get out paddling, but we did do several visits to the beach. I read recently that some scientists believe that very good things happen in our brains when we stare out over large view scapes that go on for ever, similar to meditation. Explains the calming experience of staring out over the ocean. We also had an awesome virtual surfing session, when it was a little to big for me to go out one day. Watching the big boys get the big rides, in between getting crushed, was very exhilarating, even from the safety of our beach blanket.

Kelley also brought her beefy tri-bike chair set up, so she could easily wheel on the firm low tide beach. We did some quality dog walking at the off-leash Dog Beach in Solano. This place is amazing, every kind of pure breed and mixed breed dog you can imagine, and all having fun. We didn't see one fight which was amazing, since there was literally 100 dogs there at any one time.

Kelley is hanging strong, but the nerve pain is still often crushing. She is going through some transition in her meds, which is proving to be a little ugly. Hopefully at the other side of that there will be some better relief. As after all my visits with Kelley, I am left frustrated and sad at this condition that she is in, but always inspired by her determination, courage, and ability to seize the good moments when she is graced with them.

So into the NewYear we go, with our struggles and our hope.... , I am raising my glass to more days at the Beach.....Sue

Monday, November 7, 2011

Settled In!

Hi everyone, this post is from Ro. Kelley will not have internet for at least another couple of weeks so she asked me to post an update.

Kelley, Leona, and their precious pups (Wilbur & Dudley) made it all in one piece to the new apartment in Vista. Along the way they were able to visit with good friends at a get together hosted by Sue Norman at her place in S. Lake Tahoe. Kelley was really happy to see everyone.

Then Sue N. drove them the rest of the way from Tahoe to Vista, which gave Kelley much needed rest & recuperation time. Once they arrived at the new apartment, Sue, Caroline Paul, and Jody Conners moved everything in... the original trailer load, as well as a couple more hefty loads from the storage unit! Kelley is so thankful to these wonderful gals.

On Monday, 11/7 Kelley had her first of this winter's sessions at the new Project Walk building. Since she had been gone for several months, the first part of her initial session was a complete re-evaluation. She had been working her tail off all summer, and they were pleased with the strength gains and progress she made in the last few months. After the evaluation they followed with a short workout, and Kelley was still doing ok when I spoke with her a couple of hours afterward.
With the evaluation out of the way, her next session will start her full length kick-butt workouts, and Kelley is determined to make the most of them. As always, pain is a factor and progress is slow...but there IS progress and that's what keeps her going, (along with the love and support of her family and friends).

On a final note, I will say that I thoroughly enjoyed working with Kelley this summer and am in awe of her strength, determination, and the brilliant light that emanates from her.
Keep up the good work Kelley!

Love to all of you for your wonderful friendship and support!
Ro

PS: For those of you who wrote down of Kelley's new address, please note that minor corrections were made (see top of page).

Wednesday, October 19, 2011

Leaving MT

It's getting close to pulling chalks...We're all sad to leave "the little house in the woods".

Time Table:
Oct 23 - Leaving Montana

Oct 24 - We'll arrive at Sarah Lee Lawrence's ranch in Terrebonne, Oregon. I am so proud of Sarah Lee. http://sarahleelawrence.com She is a woman who follows her heart, and keeps following it around all the curves, eddies, moving current! Sarah Lee has done so much already with her young life: from rodeo star; college graduate; river guide; building her log home; write her book called " River House"!! www.amazon.com/river-house ; she also works with soil...yes soil, she has established an organic HUGE garden. She delivers throughout her community. Sarah Lee also ran the Blue Nile with me, and was a carrier of the parasite schistosomiasis...don't worry...after learning about my situation Sarah took the Proziquantel medicine (poison) and is be rid of the malady.

Oct 24 or 25 - I am also hoping to see a good friend Ken Streater and his family, living near Bend, Oregon. A master of many fascinating things!: Firstly, when I met Ken he was a river guide/area manager; then later, husband to Danielle; father to 3 children; Real estate broker w/Benchmark Real Estate Services in Redmond OR; a writer and almost author of the book
"A Gift of Courage"...Ken chose to write a chapter about my struggles and determination during this crazy time. "Thank you so much Ken, I am honored, and with your writings you have given me more courage to keep charging ahead and believing in myself".
I hope to see you and your family on our drive south. I'll be calling you soon. And thank you, thank you, thank you, for offering to drive me south, how sweet is that!!! yeah, I was having such bad nerve pain. But last week Ro, my exercise gal, took off on a 10 day vacation, giving me a huge break with the pain. I'm doing better now these past few days.

Oct 26 - arriving at Sue Norman's house and relaxing with family

Oct 27 - 5-9pm Please come and visit us in South Lake Tahoe!!! Friends and family are welcome to come and visit at Sue Normans house: Google Ponca Drive, South Lake Tahoe, Ca It is the farthest north corner on Ponca...don't know the address just now. You can't miss the cars and my white dodge van with white cargo trailer. Sue's cell 530-400-8999

Hope to see you soon
Be Well, kelle
y

Monday, October 10, 2011

Project Walk's Grand Opening and Steps to Recovery

Project Walk just emailed an announcement for a celebration in honor of their Grand Opening (of their 24,000 square foot facility--now world's largest spinal cord injury recovery center!!) and 7th Annual Steps to Recovery scheduled for November 5, 2001, 12pm-4pm http://www.projectwalk.org/grand-opening-and-steps-to-recovery-2011/

I know it's a long way to drive...so for those who can't make it to this southern celebration...the event will be live web cast direct from the Project Walk's website at www.projectwalk.org

Last years, 6th Annual Steps to Recovery, Jody and I attended, watching many of PW clients demonstrate their various stages of their walking abilities!! It was awe inspiring, and it gave me so much hope...the hope that helps fuel my dream. Maybe this years Step to Recovery will again fuel my hope....and whether it be this year or the next year or the next..etc., my dream and others will come true.

Montana update: We've had the fun pleasure to have my Auntie Darlene (my Dad's sister) come and visit us for the past week. Whenever she is here visiting she loves spending most (all) of her time outside, either pulling weeds or sawing and collecting brush--making piles on one end of the property or the other. I was able to get outside a couple times this week to help my mom and auntie Dar. Yesterday and today they burned. She even brought the makings for s'mores. I love my auntie.

Travel update: I am so excited and looking forward to checking out PW new facility!! Also, my Mom and I will be in South Lake Tahoe on Oct Wed 26 and Thurs 27. Thursday 5pm-9pm or so, Sue was thinking of having a small h'ordervers/dinner gathering (at her neighbors larger home)...it would be so fun to see friends who could make it up to her house. Also: Thurs. I'll be there pretty much all day, and Wilbur too...so if you could only make it to pop in and say hi, that would great too. Blessings & love, kelley

Wednesday, September 28, 2011

Fall is here in Montana

Ro's birthday was celebrated this summer with a BBQ and friends. Photo: front row - Steve & Ro Fundum and their Dog Norman, and myself. In back row - Bob, Steve, Diane, Carol Ann, and my Mom Lee,

The sun is lower on the horizon making it feel like fall, but it has still been in the 80’s!

Nov. 3, I’ll be starting back with Project Walk…I believe they will be happily surprised to see the progress Ro and I have made!

The Plan: Oct. 21, we'll be leaving Montana, heading south, taking 3 or 4 days getting to South Lake Tahoe, where Sue Norman lives. I’m hoping to stay for a couple days at Sue’s…around Oct 26-28...So if there is any of you in the area Please stop in and say hi!!

Sue will help us drive, down the east side of Sierra‘s arriving in Vista, and move into the Shadow Ridge Country Club Apartments, on Oct 29-30. Address: 1669 Live Oak Road, Apt. #33, Vista, CA 92081. Caroline Paul and Jody Conners will be there as well!!…to help out with the move…ALSO, to go standup paddle boarding. I want to try out my Dad’s inflatable kayak he gave me in the lagoon, Agua Hedionda, in Carlsbad….we can all take the weekend and Monday to move in & go play. So again, if there is any one in the area, Please stop in and come play!

Ro and I continue to work…the last few workouts we were at Ro‘s house; in her huge downstairs room dedicated to exercise and entertainment!!!; with French-doors opening to a meadow with a back drop of the Bitterroot Mountains. Progress keeps being made slowly, giving glimpses’ of hope I will keep getting stronger, I find it unbelievable how far I’ve come!!…it’s painful, and at times I wonder what the heck this journey is all about. I don’t ever want to give in to the pain.
Onward~~Love kk
P.S. Joanie, Heather, Mike T, Melancholy - Thank you for you supportive and loving message!!

Saturday, August 27, 2011

Video of Kelley Exercising

Hello again everyone,
I have uploaded the video of Kelley exercising on youtube at:
http://www.youtube.com/watch?v=2wYOmrfuD9c&feature=share

Ro