And now, for something a little different...

Hello Gorgeous Ones!  This will be my last post, for a little while.  I am handing over the blog to crazy lady, to give her the opportunity to post her journal from the spinal cord injury rehabilitation unit at Kaiser Vallejo.   You know writers-- they may be restricted by paralysis, swelling, pain and angst-- but, they always find a way to note thoughts, feelings and impressions.  Crazy lady has many scraps of paper (some of them from food trays and old prescriptions!) she used to write about her experiences in rehab.  We discussed, and I agreed-- it would be cool to share those experiences with my beautiful  "fans."  You have been wonderfully supportive during this difficult time in our lives, and I figure, "why not let my crazy lady share her struggles and milestones?"  Some of the stories are pretty graphic, and some of the experiences (especially moments with the medical team during seizures, AD, pain episodes, and autoimmune flare-ups) are harsh.  There are incredible moments of joy, however-- and, the powerful human spirit often makes-up for the challenges caused by surly nurses, arrogant doctors, and rehab's reluctance to encourage human connections.  (Crazy lady was even told by one nursing supervisor to "mind her own business" and "stay out of people's lives" when her roommate was having a difficult morning and needed help--but, hey, more about that incredible incident later!)

 Before I hand over the blog, I wanted to say a few things...

...THANK YOU to Lisa the Cat Lady, Cece the Crazy Bitch, and Popeye the Wonder Dog, for keeping folks posted on events following the surgery.
...THANK YOU to the Federal Government for awarding crazy lady her disability.  Yes, miracles do happen!
...THANK YOU to the Kaiser Vallejo rehab facility for pushing, torturing and challenging crazy lady, on her road to recovery.  She will forever mumble "suck the gut and tuck the butt" when she needs to "center her spirit" and "focus on the moment."
...THANK YOU to Judy, Tyler and their wild pack, for taking care of me and giving crazy lady piece-of-mind during her hospitalization.
...and, THANK YOU to the wonderful readers of my blog, who have sent well-wishes, Glee music, MST3K DVDS, Black Adder puns,  and beautifully knitted caps.  You are AMAZING.

Luv,
Sugar Sweet
(and, of course, my crazy lady)

To fear (and love) life

(Warning:  This post contains bad words, medical angst, and no fluff.  Don't want to read it? Go here for puppies and pretty thoughts.)

Crazy lady has decided to have the big, bad, risky surgery. March 16tth is the pre-op, and March 22nd is the actual day of surgery. Her insurance runs out in June, and she really can't afford to wait for the Social Security Administration to get their heads outta their asses and do the right thing.  If she's gonna die or be completely paralyzed, she might as well have health insurance during those critical points in her life.  The number one response she hears?

"Why are you so calm? I would be scared shitless."

Yeah, so, here's what crazy lady has taught me about fear-- you let it rule your life?  You stop living.  Don't get her wrong-- fear serves a purpose.  It stops us from injury, illness and pain.   Eventually, though, we all need to jump off that cliff, take the risk, and trust in ourselves.  Her recent life's mantra is: "If I let fear make all of my decisions,  I would cover my body in bubble wrap and refuse to leave my lazy-boy."

So, seven doctors.  All specialists, all top neurosurgeons in the country.   UCSF, UCLA, Stanford, Mayo, MGH...you name it, she has spent many months seeking their opinions.  It was her version of "mitigating the risk" to "prepare for diving off that cliff."  Crazy lady is part of the Kaiser system, and Kaiser is not exactly known for cutting edge technology (interestingly, though, they are known for amazing rehabilitative care following spinal cord and brain surgery).  Spinal cord surgery procedures have not changed much in over 30 years, especially in the neck.  Some of the most interesting advancements in nanotechnology  have not reached human clinical trials, yet-- and, the powers-that-be estimate another 30 years, before the technology is ready for human consumption. Cervical spinal cord regeneration with stem cells?  If she could relocate to Tokyo and Israel,  then maybe that would be an option. Unfortunately, it's not a realistic approach in the U.S.A., thanks to an ignorant moral minority that put medical research 15 years behind-the-times during IBY (Idiot Bush Years).  Obama is doing a lot to change the backwater approach (see here for details), but progress is slow.

Anyhow, I digress. After all of the second opinions, she found some consistencies:
(1) no one knows what, exactly, will be done during surgery, and they have to take a "let's open you up and see what we get" approach,
(2) no one can predict the outcome,  and
(3) no one will know anything until 2-3 days following surgery.

Why so many unknowns?  Spinal cord injuries are  "crazy, unpredictable beasts."    When they remove the spinal column and tumors, there will be a surge of spinal fluid, and the bruising and lesions on the cord will have a chance to "breath."  In crazy lady's active imagination, her spinal cord (named "Cornie") has an ornery personality.  Cornie could decide, "hey, I like my new-found freedom" and be content to stay "as is" with no change to crazy lady's current condition.  Or,  Cornie could say, "fuck it, you wanna play games?  Take this,"  and then go completely (to quote one neurosurgeon) "ape shit." 

Best case scenario?  Five days in the hospital, home for 3-6 months of rehab (including in-home occupational and physical therapy) and recovery.  The second best case? After 5 or more days in the hospital, transfer to a rehab facility for up to 18 months of inpatient care. There's a whole bunch of "little" stuff she needs to prepare for-- problems swallowing, feeding tube, losing her voice, drainage shunt for the spinal fluid, incontinence-- and, the docs are doing what they can to work around some existing issues that won't go away with surgery (autonomic dysreflexia, autoimmune complications,  paralysis and seizures are her current biggies). All-in-all, crazy lady and her docs are preparing for the worse, and hoping for the best.

So, how do you mitigate risk and reduce fear, when there is absolutely no way of predicting the surgery's outcome?  You start by planning for each and every contingency.  No matter your age or health, it's important to...

(1) make sure you have an updated Last Will and Testament-- and communicate your wishes to anyone impacted by your will!  You can find free templates here.
(2) complete an Advance Health Care Directive.  The State of California has an excellent web site here,  and Kaiser Hospital provides a helpful guide that anyone can use (download here).
(3) as part of your directive, include personal health care wishes-- and, make sure you communicate these wishes to family and friends.  Let people know-- do you want to die at home, or in the hospital?  Cremation, burial, or frozen bits? Donate your organs?  It might be morbid, but taking these extra steps to communicate your wishes will seriously reduces stress, in the long run.
(4) make sure your dependents (like me!) are taken care of, no matter the outcome.  I'm staying with my foster mom and her clan during and immediately after the surgery.  Crazy lady has made sure my shots and insurance are up-to-date, and I'm looking forward to my pedicure this weekend.

Finally, find a way to turn the negative into a positive.  Crazy lady understands arrogant bitches because, well, let's face it-- she is my caregiver and we share many of the same personality traits.  She likes her brain?  I love my brain!  She adores her voice?  You should hear me speak!  She enjoys her luscious, long, light brown locks of hair? You should see my golden, thick coat.   The surgery might impact her brain and voice, and crazy lady has planned for those scenarios.  But, you should have heard her cries when she learned that they would be SHAVING HER HEAD AND NECK.  Duh.  Her central nervous system can't communicate to her brain, so the surgery requires easy access to both regions of her body. Listening to her complain, you would think they were talking about something serious, like a feeding tube or brain damage.  Nope, those things did not stress her out.  However,  talk about shaving her head?  The woman FREAKS OUT.

Ah yes, vanity and pride are cruel human traits.  Crazy lady had to take time to convince herself, "It's only hair. It will grow back. Why not make it a positive experience?"  So, this morning she had her hair cut off.  All of it.  She saved the locks and sent them to Pantene for cancer wigs:

The actual hair cut was free and painless (the Clip Joynte donated their time for charity, a "wow, awesome" surprise!)  The only downfall was the bald spot she discovered in the back of her head:

Thank dawg that friends and family have been sending crazy lady beautiful scarves, caps and hats, to keep her delicate scalp warm and toasty:

So, there you have it--  a date for surgery, a lesson in fear, and some tips for dealing with life events.  Plus, a little something good came out of this world of unknowns.  How cool is that?

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...

Warning...Graphic Medical Drama

So, as many of you already know, crazy lady has been through some serious medical angst. She went to the doctor with a follow-up for bad carpal tunnel in September-- and left with the collapse of her cervical spine, bone growths, spinal cord compression, edema and lesions (for those who don't speak medical, that means "big, bad sores on her spinal cord"). Every appointment gives her more bad news. Crazy lady is coming to terms with the "no matter what, you will go paralyzed from the neck down," and she is taking steps to prepare for her future. That includes my awesome certification as a service and medic alert dog:Unfortunately, her preparation also includes applying for permanent disability. Apparently, it took the powers-that-be over 6 years to find the correct diagnosis. Too late for treatment, at this stage. Possible surgery, but very bad (scary) odds. She does not blame anyone for the delay-- they were focused on her other life threatening issues, and this problem "slipped their minds." Shit happens. The need for disability, however? Very real. It's the first time she has even had to consider applying for permanent disability. She has always taken pride in her work, no matter the treatment or illness that sidetracks her life. This time is different, though. The problem is not going away, and the current solution (replacing her entire neck with a titanium cage) means at least 18 months of rehabilitative care, where they teach her to walk, eat, and dress herself. Here is what a normal section of her spine looks like:
(pretend you are standing on top of her head, looking down the center of her neck)
The center circle is the spinal cord, and the white stuff is fluid protecting the cord. The grey bones are her spinal column, "holding" the fluid and cord together. The above picture is normal and healthy. Here's a picture of the compression and injured spots:That black thing pushing against the round spinal cord? (the center of the image) One of many growths. Bad, bad, bad. The pieces of white crap on the side of the spinal column? Bits of bone trapped in fluid. Not good. The lack of fluid protecting the spinal column? Gone. Sitting on top of her brain. Overall, a professional looks at these results and goes "holy crap, you're still walking?"Then, they look at this and go completely silent:(In case you don't know, the spinal cord should not look like it's "hanging by a thread." The cord is running down the middle of the image. It is "pinched" by bone marrow growths, reducing the cord to 5 mm, less than half its normal size. This means her central nervous system is having problems communicating to her brain.)

Yep. You now understand why she has started seeing a psychologist, right? As any human being in a crisis situation, seeing a shrink is the responsible thing to do. He is teaching her to live "one day at a time" and develop skills to manage the many unknowns in her future. Crazy lady thinks her psychologist is the best thing since the discovery of tuna melts with extra cheese and butter-baked bread.So, why the current angst? Why has she broken her promise to avoid gory details? Well, she needed to vent. The super-duper intelligent folks at the social security disability office sent her for a medical appointment, to verify that the spinal cord injury and current paralysis really exists. Because, you know, people lie. It's hard to believe numerous spine doctors, neurologists, specialists, UCSF and Stanford second opinions, and the various MRIs, CT scans, xrays, myelograms, EEGs, etc... They have to send someone with SPINAL CORD INJURIES to a doctor, to STEP ON STOOLS, REACH UP, JUMP ON 1 LEG, and WALK WITHOUT SUPPORT. You refuse? They deny your claim for disability. You actually do these tests? You sever your spinal cord and die. Take your pick.Let's just say, the appointment was not a positive experience. Crazy lady refused to do half of the crazy-ass tests they wanted her to do. She had to listen to the doctor complain that her medical records had too much information for him to absorb. Huh? She watched the medical doctor throw her cane on the floor, and refused to let her use anything for balance or support. Her spine is hanging by a thread, remember? This medical professional really had no understanding of spinal cord injuries. He insisted "stretching your hands, reaching up to the sky, it's a good thing for your spine." Crazy lady honestly stared at him and asked, "You did read the neurologist report, right? Stretching my spine like that? It will cause my death." Afterwards, she took a pain pill and called the disability examiner's office to make it very clear: "You do not send someone with spinal cord injuries to this doctor. He will kill them."

The part that truly stinks is that they now have grounds for denying her claim. No disability means delaying her surgery. The longer she waits, the worse the prognosis. Crazy lady normally doesn't use my blog to rant about injustice-- but, just this once, she felt the need to share. She has received some fabulous, wonderfully supportive emails from old and new friends. She has kept pretty quiet about the crap because, well...what do you say? She wants people to know that their letters and calls are incredibly uplifting, especially during these moments when she gets frustrated because...

The "system" truly sucks.

Amen.