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.

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...

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.