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)