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.