Thursday, December 31, 2009

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.

11 comments:

The OP Pack said...

Well, that all sucks bigtime. We had no idea what your medical situation was all about and now we are so sorry to hear what you have had to go through. True idiots is all we can say. What an ordeal you had to go through. We hope you won't give up and keep trying to fight the system. We will keep you in our thoughts and prayers and hope you can find resolution.

It seems rather odd to be wishing you a happy new year, but we do hope that 2010 brings something good your way.

Wild Dingo said...

OM F'ing Dog. I cannot believe this is happening. It's surreal. It's unjust (duh). is there ANYONE who can help legally? this is absurd. I cannot believe a doctor, any doctor, no matter how bad, would say all that info was too much or make you do those exercises. it's obscene. does he even have a degree? WTF?

vent all you want crazy lady. i'd be venting a way long time ago!

hugs.
Loki, Juno and Wild Dingo

Khyra The Siberian Husky And Sometimes Her Mom said...

And woo KNOW woo khan khount My Khrazy Lady and me in too!

Vent away!

In fakht, if woo DON'T, we might just have to khome paw woo ovFUR ourselves!

WE are proud of her fur sharing this with US -

The system does sukhk - bekhause in the long run it is all about PROFIT and that sukhks BIG TIME -

Hugz&Khysses,
Khyra & Her Khrazy Lady

LK said...

Firstly, I am so sorry to hear about your health issues. Secondly, I applaud you for doing what you can to mitigate what is clearly a 100% crap-tastic situation. Thirdly, I have a few suggestions about how to deal with the heartless and mindless bureaucrats at the SSA.

Have you considered contacting your congressional rep's office? Years ago, a friend of mine was having trouble with a federal agency, and she contacted her rep's office, and someone there sorted it out for her. I don't know if it will work, but it might.

Also, have you trolled the internet for blogs or comment boards from people who have had similar issues? It can be a bit of a fishing expedition and I know that you can't sit at a computer for any significant length of time, but if there is some way to do this, it might be worthwhile.

There is also the possibility of "lawyering up" if all else fails, which I'm sure has crossed your mind as well.

Good luck! Maybe this quack of a doc or SSA bureaucrats will show up in a story or two of yours as villains or victims. . .

Linda of Bo

LK said...

P.S. When I suggested looking for posts from people in similar situations, it was to see if there are strategies or tips that other people have used successfully in dealing with the SSA.

Sugar said...

Hi-- I've trolled and found some really great blogs about SSA. There are also amazing resources available in Berkeley, but many are restricted to impoverished folks (which I think is a good thing). And, I have a fantastic attorney. Unfortunately, I have to wait until they actually deny my claim and appeal before I can hire the attorney for representation. The govt caps the amount an attorney can charge for SSA cases, and they won't take a case until the appeals are exhausted. This attorney, though, had already written letters on my behalf FREE OF CHARGE, without asking. I was floored with her support.

When I saw the lawyer, she said, "given your medical history and clear genetic cause, I can not imagine SSA denying this claim." Wonder what she would say, now? I've been checking claim acceptance stats, and learned...(1) if I were dying in 10 months, they'd accept my claim, (2) if I was uneducated, I'd have better odds of acceptance, or (3) if my IQ was below 90, the odds would also be in my favor. They actually gave me an IQ test this morning and, um, yeah...I actually had to apologize for my "off-the-charts cognition!" Dumb, uneducated and dying? Yeah, I don't meet the criteria (yet).

(Not that IQ tests have anything to do with smarts-- another discussion for another time...;-))

Contacting my rep is a fantastic idea! Thanks! Some other folks have asked to use their Facebook accts to link to this blog posting. I don't have a Facebook acct, but I have zero issues with anyone who wants to link to this post.

THANKS for all of your support! Great ideas!

Karen the Crazy Lady
(and Sugar the Miracle Dog)

LK said...

Wow, you are ON IT. I did think of something else, though I don't know how useful it will be. Have you considered filing a complaint about that quack doctor with the Medical Board of California? The URL for their complaint page is: http://www.medbd.ca.gov/consumer/complaint_info.html .

Best of luck! Go get 'em!

Linda of Bo

amylynnb17 said...

I'm so sorry, Karen. What you have done for Sugar - and other animals too (you were the one that helped Miko, right) - should put you at the top of the list for ANY help you would ever need. Please, if there is anything I can ever do for you from Indiana - do not hesitate to let me know. amylynnb17@aol.com

Amy

Sugar said...

Hi Amy-- thanks for your support and well-wishes! I much appreciate your kind words.

I am not the Miko foster parent. Robin and Judy from Walkin the Bark are taking care of beautiful, shy Miko. You can read more about Miko on Judy's web site:

http://fosterdogblog.blogspot.com/search/label/miko

There is something very endearing about her. Unfortunately, the one time she met Sugar, Miko was chased around the yard! I think Sugar was bit too spastic in her playful behavior.

Again, thanks! Your word of support mean a lot...Karen (and Sugar)

Wild Dingo said...

What? Sugar met Miko and not Loki? very wrong. very very wrong! ;)

KB said...

A friend just sent me to your blog, as I have very bad spinal problems. I'm lucky because my docs have stayed on top of them over the years (I'm 46) so I'm in nowhere near the situation that you're in. You're a very courageous woman, to put it mildly.

But, I have experience with disability (like you, I never thought that I'd need it but I sure do now). Everyone, SS and private companies, will say "no, no, and NO" until you get a lawyer. I've experienced this first hand. My claims with my private company continued to be denied until the day before I was scheduled to spend thousands of dollars to fly a legal team to depose the insurance company's so-called medical experts. At that point, the disagreement had been going on for years. But, when faced with proof that I didn't plan to back down, my insurance company offered a generous settlement.

The whole system stinks.

I haven't read forward yet to hear about what has happened with you but I want you to know that I am rooting for you. I really hope that I find some good news in your future posts.

My dog trainer is encouraging me to train and certify my beloved lab as a service dog. I just might do it once I finish recovering from my latest surgery.