Monday, December 31, 2012

If you seek a teacher, one will appear

I have recently made the discovery of a true gem in Denver, and that is, a minister I can believe in. He's highly intelligent, has been deeply wounded in the past and has recovered from it. He has amazing spiritual strength paired with a wisdom and humility rarely seen. I am in awe.

He answered my question: "How to you deal with being cast out of paradise?" His answer was: "How can you bring paradise to other places except by leaving it?" I was dumbfounded. And I'm rarely caught speechless.

So I put to him my question of how to get out of bitterness. His answer was, "How do we know our good is supposed to reach this generation? How many people were never recognized until centuries after their death? Do you think Harriet Tubman would believe there are statues of her all over the place? Not on your life. The point isn't what happens now. The point is what happens in a scope we may never have the ability to comprehend, it's so grand. But why should that stop you from trying? How else is it going to get out there if you don't put it there?

I challenged back that, sure, I kept trying. But I didn't do it with hope in my heart or any sort of grace. It was raw stubbornness that kept me going and now that I've reached success it's come too late. It's like the scene from The Last Unicorn:

MOLLY GRUE: (gasps) No. Can it truly be? Where have you been? Where have you been? (yells) Damn you, where have you been!?

UNICORN: I am here now.

MOLLY GRUE: (laughs bitterly) Oh? And where were you twenty years ago, ten years ago? Where were you when I was new? When I was one of those innocent, young maidens you always come to? How dare you, how dare you come to me now, when I am this? (She begins crying. The unicorn puts her head in Molly's lap, and she caresses it.)

SCHMENDRICK: Can you really see her? Do you really know what she is?

MOLLY GRUE: If you had been waiting to see a unicorn as long as I have...

SCHMENDRICK: She's the last unicorn in the world.

MOLLY GRUE: It would be the last unicorn in the world that came to Molly Grue. (She sniffs.) It's all right. I forgive you.

Why did success come now, when it's too late to fulfill any dreams I had? And he said, "Where are my limitless resources to fulfill the dreams I have? It's not about fulfilling our dreams the way we want to, it's trying to figure out how to fulfill them in a world that's based on limited supply---what good can we still accomplish anyway?"

And I knew he was right. I was robbed. There's no doubting that. I was sorely treated and greviously wounded in a way that will haunt me the rest of my life. But my capacity to love and to show love has in no way been diminished. My ability to teach and to help others and spread goodness in the world has not been diminished. And I may never know the true extent of my impact on the world, but no one really gets to know that.

"So given the choice of living in regret of the death of your dreams, and making the best of what's left to the greatest possible good, wouldn't you want to try for the latter?"

Yes... Yes I do.

Alright 2013... My loins are girded; my head's held high. Bring it!

Saturday, December 29, 2012

Fighting Bitterness

As I began to look back on 2012 and what I've achieved, I have to admit, it's been a pretty phenomenal year. But suddenly, I was thrown into cognitive dissonance. It's been an amazing year!! So why don't I feel amazing? I struggled for weeks wondering why. I realized that I'm full of bitterness. Full-to-the-brim angst that would put the Grinch and pre-reformed Scrooge to shame. I had to ask myself, what gives? It's all been progress. Why am I still miserable?

It took a while, but when an old friend contacted me, it all came rushing back. Yes, this life is VERY successful, given what I have to deal with. But it's a second-hand life. It's not my primary life. I had that life. I was amazingly happy before this all came crashing to a head, changing my world forever. I had to leave the one place I called home, because the climate there was triggering epic levels of pain, both for my migraines and my neuropathy. That, and all but two pain clinics were pressured to go out of business, and the last to were being pressured to not use narcotics at all. And I need narcotics. My home cast me out. It broke my heart. I still haven't recovered from that.

When I visited Seattle to hook up with my old doctor to see if she could help, it was like all this tension just melted from me. I was relaxed. I was joyful. My spirit was uplifted. Until, of course, towards the end of the trip when the pain started to seep in again. Then it broke my heart all over again. I love everything about Seattle, including the ever-present rain and the terrible traffic. There is a celebration of the individual in Seattle that makes it so no one has the right to judge. To each their own! And glory to it. That was home. I wanna go home. And I can never go home.

I've found where I need to be, and I need to find a way I can make peace with it. However, it seems the more I learn about the character of my new home, the more I don't like it. I've met a few spectacular people, but on the whole, I am not a fan. I'm sure that to several thousands of people, this place is their home. Just not me. And I struggle to fit in, in a place I don't wanna be. Do you think Adam & Eve were able to get over getting kicked out of the garden of Eden? Because it feels like I was kicked out of paradise.

I loved my life. LOVED it. It wasn't perfect, but it was wonderful, and filled with wonder. Ten years later, it's as if I'm waking from a crazy nightmare, only to find that everything that was familiar and comfortable is gone. I can't dance. I can't even be around the music to dance. I can't paint. I still have the skill, and my ability has even improved, but I can't hold a paintbrush long enough---my hands, they betray me. My body betrays me. It has taken what gave me joy and perverted it into an exercise of torture. I can't even get too interested or excited about a subject, lest I blow a migraine. I feel like a butterfly in a bell-jar, beating my wings against an invisible force-field, unable to fly.

I knew what made me happy. Now I can't do any of that. And I can't figure out what to do in its stead! I wouldn't feel so robbed, if I could replace it with something else. That, however, is easier said than done. I spend 30 years figuring out myself and what I wanted. Now, most of that information is pretty useless, if not downright hazardous. I have to come up with an entirely new list of things to make me happy, and I don't even have a clue where to start! Thinking about it sure doesn't help, because all it turns into is rumination on those things lost to me.

Certainly, I don't want to live mired in bitterness, unable to enjoy the success of 2012, but I don't know how to fix this!! Halp!

Wednesday, December 12, 2012

A Diamond in the Coal

By Jove, I GOT IT! Lo-and-behold, I now know the drug and the dosage for the cure*. The bitterness of my situation led me through a tear through the Internet. I scoured medical papers. I checked the cross-links and every little trail I could find. I enhanced the specifics of my web search, and I found not one, but TWO papers that corroborate each other and agree on the dosage! Who needs a neuroendocrinologist now? Not this gal!!! Nor do my Unicorn Sisters!

According to the two different papers out there, the dosage is 100mg azathioprine once a day (150mg was not tolerated in any case, leading to some dangerous complications*). Treatment can last up to 6 months, but it can require as little as 4 weeks in some cases. Other medications (prednisone/levothyroxine/etc.) are continued until no longer necessary. (Azathioprine as an alternative treatment in primary hypophysitis and Lymphocytic Hypophysitis: Differential Diagnosis and Effects of High-Dose Pulse Steroids, Followed by Azathioprine, on the Pituitary Mass and Endocrine Abnormalities — Report of a Case and Literature Review) [*"two-fold elevation of alanin and aspartate aminotransferase, five-fold gamma- glutamyl transferase and transient leucopenia 10 days after therapy initiation, that subsided with dose reduction to 100 mg qd."]

Now to convince one of my local doctors to allow me to try this, since I'm bringing the information to them, and it's not on the suggestion of a doctor, that may increase their liability by... a lot. I honestly don't know. It may not be a big deal at all. We'll see.

But for me and my Unicorn Sisters, this day couldn't have ended better.

*Note: I say cure, but there's no guarantee. There never is in medicine. However, the statistics look *good*... 86% show improvement, and more than 40% go into complete remission.

This article is in response to Stocking Full of Coal

[Update 12/14/12]
I called my old Neuroendocrinologists office (as she has already left practice) and was able to talk to the prescribing nurse (who is filling prescriptions until the end of the year). I told her about my situation, was able to giver her the names of the two papers, the dosage, and put in a request for a recommendation letter to be sent to my GP about how to carry out treatment. I was told to expect a call soon!

So it may be that I was able to get this all in right under the deadline. Whew! I do not like close calls like that!! But I do feel better knowing that this can proceed forward again...

Stocking Full of Coal

Many of you know, I suffer from a rare pituitary disease, for which there are less than 500 people with the disease. This is why I call myself a Medical Unicorn. When I got the diagnosis, I figured that my disease was so rare, there was no possibility that there would be a cure. There just aren't enough of us for it to make a difference to even try to find a cure. There's certainly no money in it. But then, it happened! They stumbled upon a cure, in the process of trying to fix something else in a patient. I've been trying for the last year and a half to get that cure.

My chase for the cure started with me moving to the Denver area. Doctors who study the pituitary gland are called neuroendocrinologists, and there aren't many of them in the country. There was one when I lived in Seattle, and they were the ones who originally confirmed my diagnosis. But Seattle is way too expensive a town to live in, and after my ex-husband suddenly cut off my court-ordered spousal support, I had to move back home to St. Louis. However, I quickly discovered there wasn't a neuroendocrinologist for a 5-state area. I was shocked. I was sure there would be one at Washington University, but no. So after exhausting everything I could do in St. Louis, and with the help of mt father, I moved.

It was a struggle getting an appointment with the neuroendocrinologist in Denver. At first they told me they wouldn't let me in because the University Hospital, with which she was affiliated, wasn't taking any more Medicare patients. I had my old neuroendocrinologist in Seattle fax over my MRI that showed the inflammation of my pituitary gland. That got me in.

But then, the neuroendocrinologist here took one look at me and decided that all my doctors of the past 10 years were quacks, that they had misdiagnosed me, and that all I needed to do was to come off my medication and I would be fine. She said that my thyroid problem was caused by another autoimmune disease, and it would show up on her tests. Well, it didn't. All my test came back proving her wrong. But did she change her stance? No. She still insisted I could come off all my meds and would be fine. She never said what was causing my thyroid to not work, since I came back negative on all other autoimmune disorders.

I tried switching to another neuroendocrinologist, a resident in training. However, since their scores are dependent on the exact person who dismissed me... Yeah, I didn't get any further except to keep having them spin their lies at me. At one point, I got the resident to break down and admit that they weren't going to do anything for me. I was devastated. I had the disease, I had the cure, but I couldn't get access to it.

Then, a miracle occurred. I couldn't have wished for better. My endocrinologist, the woman who had diagnosed me, and had send me to the neuroendocrinologists, was herself promoted to that very same position!! Gods be praised, I was overjoyed. I wouldn't have to prove anything to her, she was there! She was there when my disease went into remission, and I was able to come off all my meds, and she was there when it came back. It was a homecoming.

I couldn't afford the trip on my own. So I held a fundraiser, and my friends and family came out in support. I was able to make the trip to Seattle and reconnect with my old doctor. She hadn't heard of the cure, but she was able to look up who was involved in the study, to try and get the correct dosage and protocol I would need to go through to cure me. We waited for an answer.

And waited.

And waited.

I called her office today to see if we'd had any luck. Only when I get the pre-recorded greeting, it tells me that my doctor is no longer in practice!! I got no letter, no warning. Nothing. Like a stocking full of coal on Christmas morning, I'm beyond grief. I have no idea where to turn now. I can't afford another trip to Seattle. Her replacement will be a stranger who also may not believe me. Doctors don't believe in medical unicorns.

There's a cure, and I* can't get it.

She left her practice, and didn't tell me.

Who do I turn to now? Where do I go? What do I do?

How do I get what I need?


[Edited to add:]
* I should actually say WE can't get to the cure. I know of two others (Hi Jana & Cathrine!) who share my disease and who's doctors are looking to me and my results before trying it on their patients. I'm leading a charge here, and I feel like the wind has been knocked out of our sails.

Please, if you have any insights... share them. Pass the word along. THIS CANNOT END HERE!!

[Edited to update:]
Never mind!! I found A Diamond in the Coal!!!

Tuesday, December 11, 2012

Pitting the Healthy Against the Sick

I had a troll recently go off on me. I have to say, it bothered me at first. But, bless the strangers on the internet, they defended my position, and even went so far as to deconstruct his argument showing that he was guilty of the sin he was trying to cast upon me. The only thing he proved was how much of an @$$hole he was. But he raised a very interesting point... He believed he had the right to tell other people how to live because it cost him more money on his health insurance. And that, right there, is the reason why "give my people health insurance" is a bad idea. The healthy people have to pay for the sick people. And the healthy people resent it.

This is especially true in this country, where the media claims that any health problem can be solved through "healthy living" (and buying the product they're selling). The medical profession has done a great job of smoke and mirrors, hiding how much we don't know about health. But this leaves people who haven't been through the system with the belief that the system always works for everyone, and if you didn't get better, it's your fault.

And there are some amazing myths that persist in the healthy world, about the would of the sick. They believe that doctors run excessive amounts of tests to cover their @$$ in case of liability. But how can we judge what's excessive and what's not? Right now, there's a huge debate raging on mammograms, whether or not we're putting women through cancer treatment who don't really need it, just because of something seen on the scan. But do we know that's actually what's happening? What if we're catching cancer really early and saving these women's lives? What if we're treating women for cancer, ruining their lives with chemo and other processes, who would have been fine if they were left alone? Are we doing more harm than good?

See... we don't have all the answers. Sometimes, we don't even know the right question to ask. Health care is messy. There is no neat formula to follow that will guarantee a healthy life. We're learning new things about diseases every day... things we didn't think were possible. Mother Nature is a wily character, with lots of tricks up her sleeve. There are more things in heaven and earth than we could possibly imagine. So we don't always get this health stuff right.

Then there's human error...

All told, as many as 98,000 deaths occur each year due to all kinds of medical mistakes--the equivalent of a fully packed 747 crashing every other day. According to a congressionally mandated study on Medicare recipients, during 2008, 1 in 7 hospital patients experienced at least one unintended harm that prolonged his or her stay, caused permanent injury, required life-sustaining treatment, or resulted in death.
(14 worst hospital mistakes to avoid - NBC News)

And what about when the treatment is worse than the disease? CT scans are useful in the early detection of lung cancer, but the CT scan itself causes cancer.

The risk of developing cancer from the CT scan itself isn't trivial. A recent analysis published in the Archives of Internal Medicine found that a single chest CT scan exposed patients to the radiation equivalent of more than 100 chest X-rays, and that at age 60, an estimated 1 in 1000 women or 1 in 2000 men would eventually develop cancer from that single scan. (Participants in the lung cancer screening study actually underwent three consecutive annual CT scans.)
(4 reasons to not be screened for lung cancer - Common Sense Family Doctor)

And ultimately, the problem is that "Much of medicine exists in a grey zone where there is no one right answer about when to treat and how to treat. That is why you need to figure out what applies to you and what doesn't and how you weigh risk and benefit." (How to Talk to Doctors - Freakonomics) But that doesn't work well if someone else is footing the bill. It especially doesn't work well when cost-creating behavior is "rewarded" with health care, and healthy people are "punished" for their good behavior (losing money on health insurance and gaining nothing in return).

This results in a dangerous situation. Healthy people believe they're in the right, and that sick people are in the wrong. They believe that since it's their money, they then have the right to tell me how to live. And why not? My behavior costs them money. Suddenly there is a huge incentive for them to be all up in my business---how I eat, how I sleep, the risks I take (riding a motorcycle), and all the other choices I make in my life that could affect my health. That's now their business, because it's their dollar on the line.

And you'll have to pardon my tin-foil hat, but I also don't like the idea of the government being all up in my health care either. It means the government will track me from cradle to grave. Unlike most people who just need a yearly physical, I require at least one doctor visit per month. Why? Government regulations that are already in place require it. Why? Because of the War on Drugs (and what a huge waste of taxpayer money that is). And do you really think the government cares how much money it's going to cost you? It doesn't hurt the politicians when your health care insurance costs rise. And what's going to happen when people complain? The government will step in and create laws trying to force people to be healthy. They will restrict freedoms all in the name of controlling health costs. It's already happened in NYC. (NYC Super-Sized Soda Ban: Now in Effect - US News)

1% of the people account for 30% of all health costs. "One patient alone racked up $3.5 million in medical bills over a five year period." (Zakaria: 5% of U.S. patients account for 50% of health care costs - CNN) And what's the easiest way to cut those costs? Let 'em die. Kill off 5% of the population and our health costs drop by half? Do you really think with numbers like that, that there's an incentive to treat these people and keep them alive? Don't kid yourself. Health-cost-related deaths are already a reality in the U.K. (Top doctor's chilling claim: The NHS kills off 130,000 elderly patients every year - Daily Mail)

You'd think with my health care problems and costs that I would love free government health care. Sure, it helps me. In a big way. But at what costs? If it's at the cost of my freedom and privacy, and possibly my life, I'd rather not. But that's where we're headed anyway... And it terrifies me.

Sunday, December 2, 2012

No Happy Thinking Required

I'm bringing this post back from the vaults, it's a post from the very early days of this blog, when I had little exposure. Now that a few of you are listening (*waves*) I'd like to revive this piece.

First, let me introduce you to this internet gem... (edited for work-safe content)

A 23-year old medical student makes lists of all the tasks that he must accomplish each day. He spends hours studying and refuses to go out with his colleagues even when there are no tests on the immediate horizon, preferring to spend his time looking at specimens in the laboratory. He keeps meticulous notes during all his classes and prefers to attend every lecture, not trusting his colleagues to take notes for him. He is doing well in school and has a girlfriend who is also a medical student. Which of the following disorders does this student most likely have?
B. Obsessive-compulsive personality disorder
C. Obsessive-compulsive traits
D. Schizoid personality disorder
E. Paranoid personality disorder
[and written in] F. F*** you, that sounds totally normal. A**hole.

[Full article:]

Now, let's look at this little gem picked up from a site offering professional services (yes, for money) for coping with chronic pain ...

Catastrophic thinking involves magnifying a negative situation so that it seems more negative than it is, worrying and ruminating about it, and holding pessimistic beliefs about the future. It makes coping with pain more difficult.  Here are some examples:

“My back is killing me.” (magnification)
“I can’t stop worrying about what my headaches might mean.” (worry and rumination)
“No treatments will ever help me.” (pessimism)
“My life is ruined because of my pain.” (magnification)
“I spend most of my time thinking about my pain.” (worry and rumination)
“I’ll never get better.” (pessimism)
Catastrophic thoughts don't help you cope with the pain.

*rolls eyes* Here's my take on the above:

My disease is killing me. I carry an emergency shot and wear a medic alert in case it tries to suddenly, which it has. Ain't a magnification if it's true. And I have to remember how fragile I am so I can act with the appropriate care. That's just responsible.

If I stopped "worrying" about what my headaches might have meant, I'd be dead now, thanks. I'm going to continue to "worry" about my symptoms, because symptoms mean there's something wrong, a**hole! (to steal from the line above...)

No treatment is possible right now. That's not pessimism, that's just a fact. Soon as that changes, I'll do a dance of joy, but until then, I've got to live with reality... not "someday."

My life has been ruined because of my pain. My career? Over. Finances? FUBAR. Credit score? Ha! Having progeny? Not possible. Scars? Lots. Irreparable damage to my body? You bet. That life? Gone. I will never be the same. Again, not a magnification if it's true.

I do spend most of the time thinking about my pain. But that's because I'm usually IN pain. I use denial as much as possible, but I can only do so much of that safely. And there are other responsible reasons to think about it even when I'm not in pain. Worry and rumination aren't inherently bad things!

I'll never get better. This is both true and not true. I'm not going to get better but I can live better. This is a degenerative disease. The only thing I can reasonably hope for is better management of my symptoms. But it's like throwing a wet blanket over a radio: sure it muffles the sound, but the problem is still broadcasting loud and clear. That's realism, not pessimism.


The problem with these well-meaning sites is that there are going to be people, like me, who look at that list and think they're failing somehow because they can't get to these so-called benchmarks of psychological health. But it's not a failing of ours... it's a no-win situation imposed by our disease. 

So let's try rewriting that list a bit more positive-realistically...

My disease is killing me, but it's been losing so far! Ha!

My symptoms may mean something important. I will trust my intuition and work with my health providers to create a constructive plan in addressing them. 

No treatment may ever help me, but I can keep an open mind and give new ideas a chance to work. Even if no treatment ever does help me, I can say that I tried and find other constructive things to do with my life in the meantime.

My old life was ruined by my pain. So I'm making a new life that thrives despite the pain.

I may spend most of my time thinking about my pain, but I make sure that it is within reason. If it is to prepare for, manage, prevent or resolve my pain, that's responsible thinking. If it's to look for new opportunities or advancements in pain treatment, that's okay. But I will make sure I also have information on current events so I can keep up with polite dinner conversation.

I'll never get better, but I don't have to. I can do the best with what I've got left and make this look Awesome.

I lived for years without hope. Hope can be a liability when dealing with a chronic illness. I got tired of hoping this next drug would work only to be disappointed time and time again. My heart would break each and every time the treatment failed. It became too much.

So I said: Screw hope. I don't need it. I don't have to believe in these pills to make them work. It's not like in Peter Pan where I need happy thoughts to be able to fly. All I need is tenacity. All I need to do is not. give. up.*

And the strangest thing happened... I improved my situation anyway. No hope or happy thoughts required.

There's a story from WWII about the allied forces hearing that the Germans were taking no prisoners; they were just slaughtering everyone. The Germans believed this would have a demoralizing effect: taking all hope away. What soldier would want to fight if it was certain they were going to die? Why fight when there's no hope of a tomorrow?

It had the exact reverse effect. When the allies figured there was no way out, the muscled up. The Germans aren't taking survivors? Well, let's take out as many as we can because that's the best we can do. They fought like tigers.

I say, so what if the situation is hopeless? That just makes me standing up to it that much more awesome. Yeah, this disease is big, scary, and frequently totally overpowering. It sucks. It's unfair. It's only gonna get worse before it kills me. So what? No one gets out of this life alive... but I can face it with dignity until then.

"Our arrows will be so numerous they will block out the sun." - Persian emissary
"So much the better...then we shall fight our battle in the shade." - Dienekes, Spartan 
As recorded by Herodotus, Battle of Thermopylae, aka The Last Stand of the 500

P.S. I learned that you *can* give up, if only for a little while. I gave up for a few months here & there... but I would get tired of that, and eventually get back to researching, networking, reading, etc. And when I got back too it, I found all sorts of wonderful new discoveries in my absence. So don't feel bad if you have to give up for a while. You can't stay at the front all the time.