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)

Time to vote for ME!

Finally! The polls have opened for Hard Working Dog, and my nomination is ready for votes! You can vote for me here. (The address is http://mangominster.blogspot.com/2010/02/hard-working-girl-dogs-preview-vote-now.html, in case the link doesn't work for you.)

The hard working folks at Mango Minster divided the group into "boys" and "girls." Here was the original nomination by crazy lady:

"I had a sudden, unexpected change in my life about 5 months ago, which included slowly becoming paralyzed from the neck down. Sugar transitioned from a shy rescue dog to a fantastic service dog. She learned how to find help, carry my medications, go with me to medical appointments, and provide aid opening and closing doors. As a side benefit, she is also helping my father, who suffers from Parkinson's disease. I call her my unexpected "blessing and miracle"

You can read more about crazy lady's illness here and here and here. You can also read about how I help Grandpa here. Let's just say that I still have my moments of shyness, but I am comfortable on BART, Muni (including the 38 Geary bus, aka "crazy ride"), elevators, escalators (hah! take that, Loki!), busy streets, airports, medical laboratories, radiation rooms (even MRIs), pharmacies and even medical treatment rooms. I work as her "purse" when I carry her paperwork, medications and anything else she needs:I also work as her "cane," by making sure she doesn't fall and providing her with balance support. This is especially useful in elevators:And, I find help whenever she has a seizure or falls down. I am the definition of a strong, adaptable, smart, loving Working Girl. (I'm modest, too...;-)) Please take a moment to vote for me, and to pass the word to anyone else who might be interested. Not convinced? I dare you to watch this video and NOT feel warm-and-fuzzy:
Voting ends tomorrow, Feb 5, at 5 pm EST.
THANK YOU for your help! As always, my "fans" rock!

The Best Sporty Babe in the Universe!

Congratulations, Juno, on your win as Mango Minster's "Good Sport Reader's Choice!"Read more about Juno and her delicious brother Loki at www.wilddingo.com.
I'll keep you posted, once my stunning self appears for vote in the upcoming Working Dog category. Meanwhile, here's a sneak peak of my recent trip as crazy lady's "cane and purse" during her appointments this week:

Mango! Contest! Fun times!

The official Mango Monster (oops, Minster) contest begins today. Go here to vote! I have been nominated for the Working Girl (technically "Working Dog") category, which will appear over the next couple of days. Crazy lady is very impressed with my quick transition from Shy Dog to Service Dog. I even learned how to find help, if she has a seizure! How cool am I?I'm not on the site, yet-- but I'll remind you to vote for me, once my category is posted on Mango Minster's site. Break-a-leg to all competitors!

Hello, Grandpa

One advantage to being a 45-year-old woman who has had to move in with her folks, temporarily? Learning about my special talents. I am exceptionally gentle and easy to train. Crazy lady is convinced (and, she's probably right) that I have a "history" with sick people. Her parent's home is very disabled-friendly because her father has Parkinson's disease. As crazy lady redefines her independence, her mom is taking care of us. All five doctors (a.k.a. crazy lady's "medical team"), one occupational therapist and the acupuncturist call Grannie a "saint" and often remind crazy lady, "you don't know how lucky you are to be able to move in with your parents, and for your mother to be well enough to help you get around." The medical folks are often telling crazy lady these very frightening stories about people who are alone or estranged from their families, and too poor for aid. She has added their stories to her "list of things to change," for the future. Ah yes, there's a reason why some folks call crazy lady an "agent of change."

Anyhow, I digress. My role in the family unit? I watch over all of them, and I know how to find help. Plus, I am always very gentle around Grandpa. Just look at this video:

Do you see how I keep an eye on Grandpa, as he walks away? If something bad were to happen, I would find help. I've done it before, and I would do it again. Pretty cool, huh?

p.s. Karen T from Congressperson Garamendi's office called. She met with Social Security about her case, and the powers-that-be have opened an investigation in Washington D.C.. Crazy lady has absolutely no idea what will happen, but it was an encouraging conversation. If nothing else, she hopes the Social Security Administration will think twice before subjecting someone else to an inappropriate and life threatening medical exam. Maybe-- for once-- politics can be a good thing. Fingers crossed...

Day of Rest

Even us working dogs need some time off...

Working Girl

As you know, I am a registered service and medic alert dog. One of my duties is to travel with Crazy Lady to her doctor's appointments and treatments, to help carry stuff (mostly drugs, drugs and more drugs!). Here I am, patiently waiting for her to load my backpack with goodies:She had a full day of appointments, starting with acupuncture this morning. The needles and heat lamps actually improve her feet, which is a good thing. The treatments don't do much for her arms and hands, but I keep telling her "Walking is good! Be positive!" Yeah, you can imagine her response-- she scowls a lot, when I'm perky. I just ignore her and calmly stand in the lobby, waiting for our names to be called:Aren't I gorgeous? They actually say, "Karen and Sugar" when it's appointment time! How cool is that? During treatment, I sit next to her bed:Do you notice how she was trying to take a picture, but the needles and hospital gown kept getting in the way?I told her to concentrate on the treatment, but she wanted to take a picture of my beautiful self.
I can't blame her for trying. Geez, though-- I wish she caught my prettier side. Humans. At least she let me take a break and hang out at Judy's house, to play with the Pack. Pretty big smile, huh?Definitely bigger than Reese's crazy grin!

Holy crap

Car crash victim trapped in 'coma' for 23 years was conscious.Can you imagine? It's one of crazy lady's top 3 fears (you really don't want to know the other 2...) She is seriously freaked out. She's changing her "DNR" (Do Not Resuscitate) instructions to include "scan my friggin brain with this Belgium test, first!"

What a drama queen. I say, "It's just more material for her horror stories. Psychotic Goth Fans, beware."

Complete story here.

At your service, miss!

Pretty cool, huh?Crazy lady promises to post pictures of my service dog and medic alert activities. Her spinal cord injury and treatments have meant that she can not carry anything greater than 7 ounces. No lifting, no pulling, no pushing, and very limited computer use. She's even suppose to restrict walking and driving! If you know crazy lady, you know how frustrating these restrictions make her daily life. She has made wonderful progress with her voice recognition software, and she has even picked-up a gig doing podcasts for NPR next year. Plus, she's interviewing personal assistants to help her meet her writing deadlines. What about me? I am her official helper! I'm probably better than any part time personal assistant she might hire. Hey, just wait until you see my backpack in action! I'm a studly queen. Trust me.