Dark and twisted

Crazy lady dedicates the above Floyd reference to Khyra's crazy lady. Thanks to Wine and Woman, my crazy lady delved into her Floyd collections and spent the early evening perusing Animals, Dark Side of the Moon, and The Wall. Yes, she lived the cliche of a sullen, morose horror author scowling at the world and writing (well, technically, speaking into the dragon) twisted prose, into the wee hours of the night. All she needed was some medicinal fortitude, and life would have been perfect. Me? I tormented Grannie by hunting Bambi in their backyard.

Good times!

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!

Midnite snack

Yum. (and yes, I am a shameless hussy)
(who discovered a way to cure insomnia)

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.

Are we home, yet, Dorothy?

Tornadoes in California? Maybe in the central valley, but not very often (if ever) in the Bay Area. Yesterday was an exception. I was minding my own business, doing my early afternoon yoga:When I heard a rumble in the sky:What did I see?Yep, hunky clouds heading our way. Crazy lady said she hasn't seen clouds like these since her days in Colorado. Me? I just stared and scorned at her worried expression:I mean, there are at least 15 miles worth of trailer parks between her house and the tornado warnings. And, she knows what it's like to be trapped in a trailer park during a tornado storm. It wasn't fun hiding under the Chevy station wagon with her parents, brother and sisters. She did not appreciate the belching contests beneath a leaky oil pan. Anyhow, what are the odds of being hit in California?Okay, don't answer. I don't want to know.

Happy Friday

グリー 曙 大熱唱！相撲

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.

Puppies!

(Direct link to camera can be found here)

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...

Demon spawn

Poodles, this is unholy, unjust, and WRONG. Bambi is LUNCH, not a sexy plaything to whittle away your afternoons.

More about this madness here.

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.

"Just lie back and think of England."

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.

Soul Enrichment

Genius...or not...

To quote the "geniuses" who came up with this idea:
"We had just a whole bucket of beers, Coronas. I remember a couple dogs and no openers and we said, 'I think that's a good idea. We should try that! You call your dog over...you open it up, you put it back on (the dog's collar) and that's it. Why wouldn't you want this? It's basically the four-legged bottle opener for the party animal, I mean it's perfect. what more could you ask for?"

Want more PWT "special" moments? Check out People of Walmart, including today's healthy choice:

A blessing and miracle

Angry, bitter, cynical crazy lady is never the type of person to dwell on seasonal cheer and holiday dreams. One a scale of 1-10, where 10 is "truly sucks," she has been rating life a 12+ the past couple of months. The "going paralyzed from the neck down" crapola has not been fun. Miracles? Hah! Not in her world. One of her friends insists that crazy lady is a "spiritual atheist" who can "persevere, no matter the circumstances." Really, though-- trust me-- crazy lady is not that perky. So, imagine my surprise when she put together this video and came to the strange realization that perhaps the cosmic universe has provided a miracle in her life:

ME

She gave me a BIG hug and called me her "blessing and miracle."

Mob!

Mirth

(thanks, Kenneth)

Eastern Snow Days

This time, last year...spinach soup...Pink sweaters...And, my very first adventure in snow!Stay safe and warm, our furry (and not-so-furry) friends and family on the East Coast!