Sunday, January 31, 2010

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!

Saturday, January 30, 2010

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!

Friday, January 29, 2010

Midnite snack

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

Wednesday, January 27, 2010

Potty Mouth

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.

Sunday, January 24, 2010

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.

Friday, January 22, 2010

Thursday, January 21, 2010

Tuesday, January 19, 2010

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.

Monday, January 18, 2010


(Direct link to camera can be found here)

Friday, January 15, 2010

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...

Thursday, January 14, 2010

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.

Monday, January 11, 2010

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.

Wednesday, January 6, 2010

"Just lie back and think of England."

(Info about the phrase can be found here)