Sunday, June 27, 2010

Safe words

I know. I haven't posted in a while.  I blame my crazy lady.  She has been trying to get her body settled into a plateau, and it is not cooperating.  She wanted to resume physical therapy rehab, but no one will touch her-- it's that "physically unstable" and "activity causes your seizures and AD" crapola, yet again.  Oi. If she wants to take the risk and just do it, why won't her health practitioners support her efforts?  Geez.  CL can't find a co-dependent to enable her desire to walk.  They are, to quote CL, "running scared."
I know.  They have every right to avoid the risk.  It's dangerous, and no one wants to be responsible for (yet another) trip to the ER because she can't empty her bladder for over 14 hours. CL is frustrated, but we all need to learn:  Safety comes first.
Still, patience is not a virtue that she inherited, or learned.  The good thing?  I am learning new tricks!  One of the most amazing things about my watchfulness is my ability to recognize CL's seizures.  They are complex partial seizures, and even the health care professionals have a hard time recognizing them.  She doesn't have involuntary spasms, when she has her seizures.  Instead, CL loses time.  She freezes, stares, and will sometimes repeat the same phrase over and over again ("Is there a monkey in the room? Is there a monkey in the room?")  I can sense them about 2 minutes before they start, and I whine and push against her body, even when she is laying in bed.  It gives her enough time to set a 10 minute timer. If the timer goes off, I push a large button on the remote control.  The remote triggers a system freely set-up by the State of California. It calls the Operator.  If CL is unresponsive with the Operator, then the Operator dials 911.  Here's the remote activitated phone:
Here I am, practicing my mad seizure alert skills:
Pretty cool, huh?  It took about 1 hour of training to learn how to use the remote, and we practice, practice, practice (after CL disconnects the system, of course). We also use a "safe word," in case of emergency.  CL says this word, and I immediately press the nearest remote with my nose.  Yes, I am an awesome, powerful, smart bitch-- and, CL knows it!
Next step?  Learning to ride Para-transit, so I can go with her to appointments.  The seizure alert training demands that I always watch CL, when working.  The buses won't let me on the wheelchair ramps; and I have to remain out of eye contact with CL in a sit/stay on the bus for about 5 minutes.  So, we are trying different methods with the Para-transit authorities, to find a way for me travel with CL.  If anyone in the SF Bay Area is available to help with the training, please drop us an email at We can't pay cash-- but, we can provide dark chocolate chip brownies!

And, another moment of Zen under our apple tree:

Friday, June 18, 2010


The New Orleans Musicians Relief Fund, a 501(c)3 grass roots charity founded by displaced New Orleans musicians after Katrina, provides grants, instruments and most recently, a free concert series. Learn more about NOMRF here.


Thursday, June 17, 2010


ZEN (much needed after that commercial)

Sunday, June 6, 2010

Fly Girl!

Fun video, huh?
Check out the cool post here, from Walkin' the Bark Rescue.  Here's a picture of CL's new wheelchair- the one that Judy describes in her post: 

Pretty. The pink rims sparkle in the sunlight.  The motorized chair will be used for distances, ramps, travel, and anything else that requires upper body strength.  The motorized chair has already improved our living environment by making things safer for all of us.  CL has fallen 11 times since she has been home from the hospital-- all because her legs or arms stopped working without warning, while she walked with the walker, pushed the old manual chair, or transferred to another spot (i.e., bed, shower bench).  There have been ZERO falls, once she has started to use the motorized chair.  One reason (besides the obvious stability factor) is that CL's pain level has been reduced by HALF since she stopped using the old manual wheelchair from the hospital.  Remember all of the upper arm, shoulder and back pain she was having, after surgery and during treatment?  And, how the doctor kept saying that she was "too sensitive" to pain, and the nurses mocked her need for pain medication?  Well,  CL no longer has pressure sores on her upper back, and her pain level has significantly dropped. It turns out that the old manual wheelchair was creating a lot of problems.  Now that she has stopped trying to propel herself forward with nerve-weakened limbs,  the rest of CL's body has had the opportunity to heal. (Go figure-- manually propelling a wheelchair over distances, ramps and hills are a problem for someone with permanent central cord syndrome, left undiagnosed for over 7 years-- something the folks in the Vallejo rehab center never thought about, I guess...)

 Oh, and in case you think CL's life is all about terrorizing walkies with a motorized vehicle, she has not given-up on using a manual chair.  CL's new manual chair arrives in 4 weeks, and it glows in the dark!  Totally awesome, right?  She is paying 100% out of pocket for the $3000 manual chair, but she wants to use it as back-up, in case there are problems with the motorized chair.  Plus, she gets to order a chair that will be less stressful on her body than the bizarro manual chair that was prescribed to her, when she left the hospital.   Her new manual chair will have long arms, to prevent unstable transfers;  a hard mesh back, to prevent the pressure sores she was getting from her old manual chair; and specialized "quad pegs," making it easier to push herself, since she has zero grip after 5 minutes.  CL plans to use this new chair for short, flat distances; and for traveling no more than 75 feet, which appears to be her limit before spasticity and pain sets in.  (Again, why did Vallejo Rehab not consider this an issue, before discharge?  Did they expect her to sit on her arse and not move, all day long?  Oy vey...)

Thank dawg Kaiser home health care, CL's new physical medicine doctor (he totally rocks!), and her wonderful PCP worked together and intervened to fix the safety and pain issues left unresolved during hospitalization.  Our life has settled into a routine, and CL is starting to explore the outside world.  She has arranged for art space at Creative Growth, and wheelchair Yoga at the Niroga Center for Healing.    She also returns to the rehab center for outpatient physical and occupational therapy.  She can not wait to use this really cool machine that will allow her to safely walk on a treadmill:

With this machine, she can test how long she can move, before one (or both) of her legs "disappear" from her body.  Finally, CL can safely experiment and try to build endurance, without the fear of falling or injury.   Woo hoo!  Next step?  Seizure control!

p.s. Why the colors and glow-in-the-dark?  Well, CL believes:  "You need to create 'pretty' wherever you can in this world-- especially shiny, sparkly, colorful pretty-- anything to lift your spirits and make your day a shiny, sparkly and colorful one!" 
(Tie Dye in the Wilderness by Lisa Sanditz)

Yeah...I have no idea how a hardcore horror author still maintains her psychedelic outlook on life...I keep thinking of the Creative Growth director's comment about CL, during the interview: 

"It's always the smiling, engaging and laughing artists who come-up with the darkest material..."

Thursday, June 3, 2010