Target

(Looking for warm-and-fuzzy?  Go here.  This long, angst-driven post is not for you...)

CL has been thinking a lot about life changes, poor medical care, people-in-need of social services, (mis)perceptions, beauty, sex and, well, LIFE in general. Many good things have happened, including new adventures and new strengths.   After speaking with her fabulous shrink about the Safeway and Whole Foods incidents, however,  CL has been "stewing" and "confused." 

Here was the conversation with her shrink:

Shrink:  So, how do people see you?
CL:  See me?
Shrink:  Yeah.  If you could describe yourself, and other's perceptions, what would you say?
CL:  I don't know.  I mean, I know the correct answer from my head, I can analyze their perceptions and my reactions all I want-- but I honestly can not define how I feel.  My heart is confused.
Shrink:  What do you mean?
CL:  Well, sometimes I feel invisible.  No one sees me.  They cut in line and ignore me, when I say "hey, I was here, first."  They try to run me over with their cars...they steal lights from the front of my house, so I can't use my wheelchair at night...they push me underwater, away from the rope, when I try to swim...you know...invisible...

Shrink:  They?
CL:  People.
Shrink:  What kind of people?
CL:  Arrogant,  self-entitled, I-would-call-them-pricks but I actually like the word "prick," so...you know...PEOPLE.
Shrink:  Not all people.
CL:  Yeah, not all people.  Just 90% of the world who live in their bubbles, ignore people in need, treat me like I DID SOMETHING WRONG.
Shrink: Anger.
CL:  You think?
Shrink:  And sarcasm.
CL: Really?
(pause) 
Shrink: So,  the "F" word?
CL:  Frustration?
Shrink:  Yeah.  Frustration.  So, tell me, how would you describe yourself, in these situations?
CL:  Besides angry and sarcastic? Fuckin frustrated?
Shrink: Uh-huh.
CL: Confused.  I mean, what do you say to people, when they make assumptions about your life?  When they chose to see you, and not ignore your existence?  When they scream out of their car windows, "hey fat girl, get off your ass and WALK outta that chair!"
Shrink:  What?

CL:  Oh yeah.  When people see me?  They are pissed off.  They think I put myself in this chair, I caused the tumors, I'm spending their tax dollars on services not really needed by a cripple.  I mean, one of my neighbors actually called the paratransit authorities to COMPLAIN about the bus, and how it was a waste of tax dollars to pick me up and take me to my appointments.  These are people with kids.   They should set a compassionate example for their children. Can you believe these people in suburbia, living their self-entitled, egocentric lives?  I mean, WHO DOES THAT?
Shrink:  Huh. Maybe you should move to Berkeley? 
CL:  Right.  A whole other kind of self-entitlement ass comes with Berkeley.
(pause)
Shrink:  True enough...so, do you feel like you have a target on your back?
CL:  A what?
Shrink: A target.
(long pause)
CL:  I don't like that word.  TARGET.  I don't like feeling as though someone has chosen me as a target for their rage. That's frightening.

Shrink:  Maybe, for the first time in your life, you are a visible minority. 
CL:  I'm a Jew in Walnut Creek, with a rare genetic disease.  Being a minority is nothing new.
Shrink:  The wheelchair is new.
CL: True.
Shrink:  People are making assumptions and treating you differently, because of how you move your hands and arms, use the chair, ask for help, try to swim, take the bus.  You're a visible minority, now.
CL: True.
Shrink:  So...do you feel like you are a target?
(pause)
CL:  I don't know.

Amen (says the spiritual atheist)

Read this.

Dedicated to the woman at the Walnut Creek Whole Foods who approached CL and said, "Wow, you are SO LUCKY to be shopping in a wheelchair.  You don't have to carry anything, and walking won't make you tired.  Do you even realize how lucky you are?"

CL:  "Uh huh. Unfortunately, my chair is not a luxury item, like your BMW."

Or, the Safeway check-out clerk who asked CL's personal care attendant (Miss J), "are you this special lady's caregiver?  You are so brave to help her out.  I wish we had more people like you, to help those who are, um,  you know-- special."  Then, the check-out person turned to CL and said- very slowly and loudly-- "what a good girl you are, to do your very own shopping!"

(later)
Miss J:  What was that about?
CL: She thought I was slow.
Miss J:  Slow?
CL:  Mentally challenged, mentally handicapped.
Miss J:  What is that?
(pause)
CL:  Retarded.
Miss J:  WHAT?  Why did you not defend yourself?
CL:  Um, first time anyone in my life has ever assumed I was mentally handicapped, in some way.  I was speechless.
Miss J:  You need to go back, defend yourself, let her know that you are not retarded."
CL:  And say what?  She thought she was being nice, kind, open-minded. Asserting myself after-the-fact would embarrass her, and make me look even more mentally challenged.  Next time, though?  I'll find a delicate way to say, "hey, this chair does not make me mentally--"
Miss J:  --retarded?
(pause)
CL:  Um, yeah. Retarded.

Thanks, S.K., for your insights this week.

ZEN

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?

Potty Mouth

Disclaimer:
If you are looking for a light and fluffy piece about puppies, check this out.
If you have a delicate disposition and detest bathroom talk, go here.
If you are related to crazy lady and find her medical stories upsetting, visit here.
None of the above? Consider yourself warned.Crazy lady has been making "the rounds" with various neurosurgeons, searching for a good fit for her upcoming surgery. She's screwed because the damage is severe, but she knows that there are different levels of being screwed-- totally, somewhat, or maybe just a little. She leans towards surgeons who have a lot of experience with a "little screwed" attitude. (She only prefers the "totally screwed" outlook when dating wicked men...)

Anyhow, one of the most disheartening elements is the number of years she has been symptomatic, with no one saying "ah ha!" after a trip to the emergency room, neurologist or regular doctor. She learned early on that it is important to be your own advocate, especially when dealing with medical professionals. Doctors live in a world of numbers and assumptions. Are you fat? Must be sleep apnea. Female trouble? You're hysterical. Shitting yourself? Stress induced, most likely irritable bowel. Doctors look at people, lump them into a normal statistical range, and never connect the dots or consider the outliers. Using outliers (those "rare, but possible" scenarios) to find a diagnosis is too expensive. It does not make sense when you live in a universe driven by profit. It only makes sense if you're a staff writer for House. If you-- as a patient-- suspect that something is wrong, you need to find a way to "connect the dots" and prove it to your doctor.

Most of all, always remember that doctors are human beings, and they make mistakes.

This was a hard lesson to learn. Crazy lady has a long history of swollen bellies, high fevers, night sweats, internal bleeding and rashes. It took the powers-that-be over 25 years to find the cause. There was no cure, but the diagnosis heightened her doctors' sensitivity to outliers. Knowing this, the geneticist cautioned crazy lady in the early days of her disease management:

"Your doctors do not know this disease, and you will have to be the expert. YOU will have to teach THEM."

So, crazy lady has learned to provide Mayo clinic summaries and "cheat sheets" to new physicians, especially anyone who needs to perform surgery. She has learned that surgeons never listen to the patient. They are "cutters"-- they focus on the rot in your system, and they "cut it out." She gets tired of surgeons claiming, "It's no big deal, we'll just go in and fix it." Inevitably, she overhears them grumble in recovery, "Holy shit. Well, that was interesting." Her favorite words-of-wisdom from one of her doctors, after having to remove her "female parts?" "Thank God you listened to your body, and not us (doctors). I thought for sure we were right. I guess we were wrong."

But, I digress. Like crazy lady says, "Anger at the past gets you nowhere." Past mistakes, however, can help you prevent future drama. Let's take the most immediate mistake-- the current issue with her spinal cord and column. What happened?

Well, as far as she can tell, it started with a carpal tunnel diagnosis many years ago. When she was in Academia, she oversaw massive medical history databases, including the National HIV Registry and the UK Breast Cancer Registry. Later, when she slaved for Corporate America, she worked with medical and finance databases. She also spent extra hours writing short stories and books. She had sold her first story when she was 15 years old to Penthouse Magazine, and she was hooked. (Did you really think the forum was written by perverted men? hah!). She averaged 18 hours a day at the computer. When her hands went numb, she wasn't surprised at the carpal tunnel diagnosis.

Then, four years ago, crazy lady lost bowel control at work. One moment, she was talking on the phone to some bank executives-- and the next moment, she was shitting in her pants. (The irony of the situation was not lost on her.) What did she do? She put the phone on mute, adjusted her headset, and ran to the bathroom. She sat on the toilet and continued her conference call. Okay, perhaps this was not normal human behavior, but she was more worried about stopping unethical banking practices than crapping in her pants. When she started having bladder problems later that night, she (finally!) went to the emergency room. Their diagnosis? Maybe stress, irritable bowel, weak muscles, and/or lactose intolerance. They taught her Kegel exercises, pumped her full of drugs, and sent her home.

And here was her first critical mistake-- crazy lady did not question the diagnosis, and she devalued the problem. She still doesn't know why. Maybe because it was an "embarrassing" problem, and her doctors hated to discuss it? (trust me, crazy lady doesn't get embarrassed about bodily functions) Maybe because she had learned too well in disease management programs to "box" pain and discomfort, like all good Stoics? Maybe she was tired of her body crapping out on her? (pun intended) Living your entire life in pain can be exhausting. Plus, stress was a very real issue. She worked for an evil institution, and she hated the politics of her job. Her writing was gaining in popularity, and she was having a hard time juggling commitments. Her characters didn't care if she indiscriminately peed and pooped, but it was a very real issue in the workplace.

Now, she wasn't a complete moron. She continued to bring-up the bowel and bladder problems during her biannual doctor appointments, but no one seemed concerned. Crazy lady stopped worrying and moved on with her life. Only recently did she connect the dots and mention it to her neurosurgeon. She wanted to know "what happened?" and "what can be done to prevent this from happening to someone else?" So, crazy lady compiled 30 years of medical records, built a database, and developed a "symptom" timeline. She overlayed the symptoms with the "misdiagnoses" for a 20-year span. (Yeah, I know, her neurologist called it OCD, before he scanned the results into the computer for his own research study...) The surgeon's response to her analysis?

"Huh. If they had run the MRI 4 years ago in the ER, they could have done the surgery and stopped the problem. Now, it's too late."

Then, he said something that made her furious with him and herself:

"Maybe you should have said something sooner? How were we suppose to know?"

Ah yes, misguided blame and guilt. The end result? (Besides suppressing the desire to twist the surgeon's testicles until he stopped screaming?) Crazy lady was reminded of some valuable life lessons...

Trust your instincts.
Listen to your body.
If your doctor won't listen, find another one.

Don't ignore problems that last for days, weeks, months and even years. Find an answer that makes sense for your body. Always have an updated copy of your medical records, and have faith in your ability to "connect the dots." Finally, to paraphrase her geneticist, never forget that YOU ARE THE EXPERT.

Stoic to a fault

When you have been sick for a long time, you find a way to define yourself as "human" without illness. For crazy lady, this means "putting pain, symptoms, trauma into a little box, and sticking that box in the back of your brain." She believes that the allusion of control over illness is critical for normal, daily function. It's a uniquely American response to sickness (you must "fight the disease" and death means you "lost the war"). It's all part of the ethos which surrounds intrinsic values of capitalism (yes, another conversation for another time...) In other words, you don't let illness control your life-- no matter how much you hurt, or how sick you feel. As a human, you learn to "suck it up."Her doctors call it "stoicism." Here's what her humongous medical chart says:

"The patient is a classic stoic personality. She is pleasant to be around, approachable, extremely intelligent, curious and pragmatic in her outlook. She will often pretend to be healthier than she really is, so be watchful of cues, especially responses to pain."

Crazy lady never saw stoicism as a personality flaw, and her doctors (until recently) never said a peep about her behavior. Do you want to strap her down, wrap her breasts tight against her body, and flip the exam table, to get a better image of her liver? Not a problem. Toss radioactive die into her spinal column and measure electrical output by shocking her nerve endings? Have fun. Want to jam giant needles into her bones to extract the marrow, without anesthesia? Enjoy yourself. She'll just add the feelings to a horror story, and then move on with her life. I mean, what are you suppose to do? Cry, scream, rant, holler, piss yourself?

Hah. Not her style.
The problem? Stoicism is not always a virtue. It gets you through the immediate crisis. It helps crazy lady focus on those things in life that bring her joy-- friends, family, fiction, and (of course) me. It also helps her ignore things in life that could be potentially life threatening. You stick those symptoms and emotions into a box, and people remark (with admiration), "you're so calm." You ignore the walls as they start to crumble. Gradually, your feelings eek through the flimsy barriers. Self doubt, anger, fear and frustration slowly creep into your psyche until you have problems eating, sleeping and reading. You begin to have sudden bouts of tears and brief periods of numbness.

Crazy lady calls this depression. And, for the first time in her life, she is really depressed.She knows the signs. She's had the shrink training, and she has helped many friends who suffer from various types of depression. Crazy lady has also had those lapses in time when she rages and cries against the world. In the past, the sadness and anxiety have never lasted more than a couple of days. Crazy lady will wake-up and move away from the blues to focus on something "more productive than anger and tears."

It has been a little harder to wake-up and feel productive, these days. She's trying. She is keeping a schedule, working to improve her daily living skills, and trying to mitigate any risk for her upcoming and scary surgery. When a doctor (or disability examiner) asks her to perform a functional exam-- even something as simple as removing her socks-- she always says, "Yes, okay, not a problem." Then, she tries, stops, and stares at her offending foot and hand, mentally demanding that her limbs behave themselves. "Move, damn it, MOVE," she silently rages against her paralyzed limb. She wants to prove to herself (and the doctors) that she is getting better, that the current diagnosis and prognosis is a huge mistake. What is wrong with her? Why can't her MIND control her BODY? Why won't she just "suck it up" and "get better, already?" If a disability examiner assumes she is faking, maybe they know something that she doesn't know? Maybe she is doing something wrong?Yes. Doubt feeds the depression, and stoicism feeds the doubt. To quote crazy lady, "it's a cluster fuck."

So, what to do? First, crazy lady is seeing a great shrink. He recognizes the signs and is working with her to manage her depression. Second, she is turning the self doubt and anger away from herself, and channeling those emotions into "constructive action." Crazy lady is forcing her doctors to address those issues that they have ignored for many, many years, especially those issues that are causing the damaged spinal cord and bone marrow growths. She is seeking second opinions outside of her medical system (Kaiser)-- and then forcing the Kaiser docs to follow-through on those outside opinions. Third, she is successfully engaging her congressperson for help, and they have opened a federal investigation against the local Social Security office. Productive behavior is excellent medicine for the psyche.

Finally, she is working on an idea. Before her life took its current "hiccup," crazy lady wanted to take time off from writing trashy horror and paranormal romances this year. She was planning to spend a year researching a social issue, and then write a "meaningful book" about "a social crisis that needed to be fixed." But, she hadn't found a topic-- until now. She doesn't know what direction she will tell her story; but she does know that her experiences with the social security and medical systems need to be told. She has ideas on how to fix the problems; but she doesn't want to lose herself in over-thinking and over-analyzing the issues. She believes a personal, honest account carries more impact than dry, boring, academic rhetoric.

So, who knows? Somewhere in her itty bitty brain is a non fiction story that could help others-- and, just maybe, help control her feelings of helplessness, sorrow, fear and anger.I'll keep you posted.

Politics and Hope

Wow. It has been a seriously busy week, and the upcoming weeks include 18+ medical appointments. Crazy lady has started occupational therapy, and she hopes it will enable her to regain some independence. Occupational therapy is teaching her how to compensate for the loss of strength in her hands and arms. They are teaching her how to do those little things we all take for granted-- dress, wash, cook, brush hair, clean clothes. The next time you wash your hair or put on your pants, try NOT using your hands. That's crazy lady's world, right now. It has also given her some positive glimpses into an otherwise dismal future. In other words-- for the first time in many months-- crazy lady has hope.

Another glimmer of hope has come from an unexpected source: her congresspersons office. Thanks to the wonderful suggestions by Linda of Bo, crazy lady went ahead and wrote her congressperson, John Garamendi. She's a realist- she knows that the political machine is tangled in bureaucracy. Nothing good might happen. But, what harm could it do? And, maybe it will prevent someone from getting hurt by incompetent social security medical contractors, in the future? Here's part of the letter she sent last week:

"...I am writing because I have grave concerns with the type of medical tests DDS has required me to perform, due to the inexperience of their medical consultants. The tests were in direct conflict with my treating physicians’ instructions, and have put my safety and health at high risk. It has become apparent that:

(1) DDS medical consultants have very little (if any) experience with cervical spinal cord injury and the progressive nature of my disease.
(2) The independent referral physicians used by DDS have very little (if any) experience with cervical spinal cord injury and disease.

... I had to refuse some parts of the medical exam; and, as a result, my case will most likely be denied and I will have to undergo a lengthy appeals process. However, what if I were someone who could not say “no” to a physician during an exam that put her life at risk? I understand that errors happen, but there is something very wrong with a medical review system that permits these kinds of mistakes..."
Congressperson Garamendi's office sent crazy lady some paperwork to complete, and she called because, well, she can't hold a pen to write. She was hoping they could send her an electronic version of the questionnaire (dragon ROCKS for voice recognition). She spoke with Karen Tedford in the Walnut Creek office, and learned that his office often meets with representatives from the Social Security Administration, to review problems and issues brought to their attention by his constituents. Again, crazy lady is a realist, and she knows nothing good might happen- but, she was encouraged by Karen Ts professionalism, experience and tenacity. The woman had an obvious passion for her work, and a belief in "doing the right thing." So, even in this insane, chaotic world, good things happen.

p.s. Oh, and the paperwork? Karen T apologized and said "don't worry, what you sent should be good enough for them-- sorry, did I scare you?" Crazy lady just laughed. Karen T had the same scary voice that crazy lady used to have, when she worked for Corporate America.

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.