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 indeoluv@gmail.com. We can't pay cash-- but, we can provide dark chocolate chip brownies!
ZEN

And, another moment of Zen under our apple tree:

Eeyore's Lost Tail and Doggy Zen

Oh dear, crazy lady has had a difficult 2 weeks.  She is not feeling especially perky, positive or plentiful.  She's a bit pernicious this morning, and she needs a break from the "real world."  Her amazing sister Cece (aka "crazy bitch") bought her some time from the posting world this week, but I think CL needs another 48 hours of rest.  Her silly seizures are "whoopin her arse" and she's pretty unstable-- no matter how careful she is, she keeps falling!  The powers-that-be gave her a useless manual wheelchair with short arms and impossible control (ever try to push a wheelchair with no upper body strength and grip?  not pretty...).  The wonderful folks at Kaiser home health and her new (amazing) rehab doctor are pretty appalled, and they have rallied to find her a better wheelchair so she can regain some independence. But, these things take time, and she is stuck at home.  Meanwhile,  it looks like CL may need some more time in the hospital, to get her seizures under control. They've quadrupled in size and intensity since the surgery, and the medication is only partially working.  So, I've decided to give CL a break and let her stay in a self pitying, cynical, angry funk for the weekend.  Believe me, though-- as of this Sunday, I am forcing her arse into a happy frame-of-mind, so she can finish posting her Vallejo Rehab diaries.  The physical and occupational therapy folks worked miracles; and we all need a bit of sunshine after hearing about the poor medical care she received in the hospital.

So, to acknowledge her funk, I give you a moment of Eeyore:

And, to give us all a moment of inner peace and sanctuary, here's Doggy Zen:

Before the journey begins

CL here,  prepping for the upcoming upload, while recovering from (yet another) fall because my silly brain won't cooperate with my body...(sigh)...have I mentioned lately that seizures and wobbly legs truly suck?

Anyhow, I've been trying to give my Kaiser Vallejo rehab experience some perspective-- maybe, over time, things will look different.  The problem?  They look worse.  I know I was a difficult patient-- I was sad, grieving, in constant debilitating pain, and trying to make the best out of a bad situation by keeping a "stoic" outlook.  Plus, I threw the medical folks (nurses and doctors) for a loop.  They were hopelessly unprepared for anything that fell out of the Spinal Cord Injury (SCI) "normal" realm-- especially rare autoimmune diseases and central nervous system disorders.  They tended to ignore non-SCI issues, or slap a band-aid on anything that got severe enough to trigger more SCI problems. Having seizures 2-3 times a day? Never happened as frequently, before surgery?  First, deny that they were "real" seizures (apparently, "grand mal seizures are the only ones that count"-- yep, a direct quote from one of the nurses).  Most of the nurses refused to chart the incidents until roommates, physical therapists and other patients said "hey!  that's a seizure!" when I "faded out" (I lose time and memory, so I have no idea when I have them unless someone notices something or Sugar sounds an alarm). On my second day in rehab, the physical therapist noticed a 10 minute complex partial seizure that the nurses could not  ignore.  What did they do? They told the doctor, who then doubled the seizure meds without consulting my neurologist and letting me know about the change in my dosage! Again! (as you'll learn, the doc loved to change medications and dosages without telling me, first...fun times...not...) Oh, and it gets better...

Hmmm, gotta fever?  Not too bad.  Not severe enough to call the doctor.  What?  You have an autoimmune disease that causes fevers, and it will leave a rash with a distended belly, kidney failure and fluid in the lungs?  Sure, we believe you.  Maybe.  Never heard of it before, although it's noted in your chart. Oh, what's that?  You have a stomach ache, and believe you're starting an autoimmune reaction?  It's probably acid reflux, nothing to worry about, you just need to lose weight. Nope, we don't need to read the Mayo Clinic notes on your disease. Huh? What's your problem, now? Hmmm, that's a HUGE rash on your belly.  Maybe this is something we can't ignore.  What?  You need medicine right now, or it will get worse?  Um, okay.  Let me talk to the doctor. (20 HOURS LATER) Oh, yeah, doctor says we can start you on the autoimmune medicine.  He doesn't need to speak with the specialist, he thinks he can treat it. (10 DAYS LATER) "The doctor spoke with your specialist this morning.  Yeah, it's bad.  We guess the autoimmune response made the SCI recovery more challenging. You should have said something, when it started..." (yes, uh huh,  because it was ALL MY FAULT THAT THEY IGNORED ME).

I was willing to cut the medical folks some slack for not knowing how to recognize partial seizures, dystonias, and rare autoimmune diseases.  I even cut the doc and nurses some slack for ignoring my heads-up ("um, hey, this is called an AUTOIMMUNE REACTION and it will get worse unless you give me my medication RIGHT NOW.  It will even put me in autonomic dysreflexia and KILL ME, if you continue to ignore what's happening to my body").  I'm not willing to cut them slack for poor patient care and lack-of-response for SCI related incidents, however.  I have an incomplete spinal cord injury in my neck. C4 Asia C is the official diagnosis.  I have autonomic dysreflexia, bowel and bladder incontinence, and I can not stand or walk without assistance.  Leaving me in the shower, unattended, for over 90 minutes?  Unacceptable.  Turning off the nurses' call light for the main station and not coming to help me go to the bathroom?  Unacceptable.  Not opening my meal containers because you have a "pinched nerve" in your neck?  Really?  Unacceptable.  Leaving me in my urine soaked wheelchair for TWO HOURS and refusing to help me?  Unacceptable.  Falling out of bed, unable to call the nurse because they disconnected the call button-- and then refusing to come, when I yell for help in the middle of the night? Unacceptable. My favorite?  The nurse doesn't like the ALARM sounding, every time my blood pressure reached the danger zone? She resented having to follow the autonomic dysreflexia protocol for someone who was "congested and just probably getting a cold?" (yep, another direct quote)  Her response?  Just TURN OFF the machine without recording the incredibly high numbers ("they are probably wrong, anyhow")-- and then tell the doctor, "there's nothing wrong with the patient" when she calls for an update.  Seriously.  Insane, unacceptable behavior.

I know I left rehab too early-- but, I wanted to leave.  No matter how wonderful the physical and occupational therapy was, the medical team was going to kill me.  Why?  From what I can figure out, they seemed to think I wasn't "as bad as everyone else,"  "didn't really need to be there," and I "made things harder for the sicker patients"  by "spending too much time talking to them and not minding (my) own business."  Oh, and my favorite complaint about me?  I was "too cheerful and social."  Yes,  smiling, saying "hello" and asking "how are you?" to other patients was discouraged by the nurses.  Daily.  Even the daytime nursing supervisor responded to my comments about my care by MOVING ME TO A DIFFERENT ROOM, so I was farther from the nurses station and couldn't overhear their "complaints about the difficult patient in room 3019B (me)."

Insane and unacceptable.

I was the patient.  I was there to be cared for and treated in a safe environment.  The physical and occupational therapy teams were awesome.  The medical team needed to learn SCI treatment protocol, and the value of caring for patients as though they were a member of their own family.  The frightening thing?  I suspect some of the nurses actually treated their own family members like they treated me-- like dirt, something to be swept away and ignored.  Some of the nurses were fabulous, and you'll read about them in my journal.  They have a difficult, challenging job.  The doc is one of the best SCI specialists in the country; but he was  unwilling to examine anything outside of the SCI world that would impact my recovery, like painful autoimmune diseases and debilitating seizures.  I learned to like him as a human being, and I learned to respect his amazing SCI knowledge.  Now, if only he could see beyond the injury and view me as a human being. That was his challenge during my treatment and recovery.

Ah yes, memories...so, before I start uploading the journal, here's the daily moment of Zen:

The journal begins tomorrow, and the journey is ever-evolving...ciao! (and kisses from Sugar)