Saturday, December 31, 2011

Holidays are something that happen somewhere else

Dedicated to Lori Patton

I gave up the holidays with my marriage in 2005. It's just all too much. I can barely manage the small "workload" I've set to myself on any given week. Going above and beyond is just not physically possible. It's not that I don't like the holidays. I do. I'd love to be caroling and baking holiday cookies, decorating and planning family meals, and making personalized, holiday gifts. I just can't. I haven't been able to for a very long time. But I've come to a place of peace with it. I don't fight the holidays. I'm not all "Bah! Humbug!" But nor do I let myself get caught up in the moment of the season. The holidays far enough away, I've got plenty of time. Oh, look, aren't the lights nice. Hey it's New Year's already? Sweet! Another year done! And just like that, I'm through. It's still just winter and cold again, and nothing to worry about.

It's easy for me: it's just me and my cat. If I had kids, it would be an entirely different story and frankly, I don't know how some of y'all do it. But for me losing the holidays is not a big loss. The peace with not having the pressure of the holidays is certainly nice. It's just Wednesday. Or whatever day of the week it happens to be. I use the increased time inside to catch up on indoor activities like painting and reading. I let all the festivities and rituals be something that happens to somewhere else. It's not my concern. It's like music from another room. I can enjoy it if I want to listen, or I can ignore it all the same.

I've had to scale back so many of my activities, that I really need to pick and choose what is important and what isn't. If it isn't important, I don't worry about it. It's a celebration any day that I am well enough to be in the kitchen cooking from scratch, whether it be dinner or a batch of cookies. I do not need to exhaust myself trying to match my ability to bake and cook with the timing of a holiday, no matter how old. I rejoice every time that I'm able to take on an extra activity like visiting with friends or having the patience with my hands to make a gift. I don't try and force my hands to work overtime for gift giving. I am not one of Santa's elves. I do my gifting year-round, as my body allows. I take my joy as it comes, not from the calendar.

I could spend every day morning what is not perfect about my life. My I am amazingly blessed. My mind is, arguably, still with me. I am not a prisoner in my body. We're not on the best of terms, my body and I, but the relationship has gotten better in recent years. Life has taken me places I never expected, good and bad, and given me a sense of fulfillment I never thought I'd have so young. I never thought I'd find a reason to celebrate being poor, but some desperate measures have resulted in some surprisingly wonderful breakthroughs. I never though I'd celebrate being crippled, but the wisdom and strength I have had to forge as a result I wouldn't trade for anything.

My "Holy" days are spontaneous and without warning. They are without ritual. They are without tradition. But they are precious still, and I mark their passing. It was that Friday that I was able to stay out and keep pace with my friends in an evening of socializing. It was that Tuesday we were able to meet up for lunch and a quick peek around the local shops. It's any time I'm able to post a picture on Facebook about what I made in the kitchen. It was that day I felt brave enough to risk going to the movies, and didn't need to take any medicine as consequence. It's the couple of days of good planning that got me through a period of pain without it being a catastrophe. These moments, these times, are sacred to me. They are gifts. They are blessings. They are my holidays.

I make sure to breathe in these random moments as though is Christmas morning, as though it's New Year's Eve, as though it's the 4th of July. I drink up the joy in the moment that I am able to experience it in. I'm mindful of consequences, of course. It's difficult to be successful in my condition and not be mindful of consequences. But I will take my chances where I can get them, as they are so few and far between. And a very merry unbirthday to you too! So it's not so much that my holidays are somewhere else as they are somewhen else and someway else. My holidays don't come in familiar packages at predictable times of the year. They are moments that magically unfold in front of me, that I marvel at in hind-sight, and say, "Did you get a load of that? Wow... wasn't that somethin'! Man. Amazing. I am glad to be alive."

Thursday, December 29, 2011

I have a little shop!*

Here and on the new "Shop" page you will find items to purchase in support of this blog. I don't like running advertisements, and I'd like to stay away from that as long as possible. Instead, I offer you my line of fine "Make This Look Awesome" gear. All these products are through Zazzle, so no need to worry if I'm having a bad day... you'll get your stuff anyway!

Make This Look Awesome Tote - $19.50

Those of us with chronic illness often have a lot of papers to carry. Sometimes to the doctor's office. Sometimes from the doctor's office. This neat little tote is your paper-holding pal.

Make This Look Awesome Hoodie - $44.50

Hoodies are an easy layer of warmth to throw over any outfit. The traditional kangaroo-like pocket on the front is convenient in oh, so many ways. Seriously... you can never invest in too many hoodies.

Make This Look Awesome Mug - $16.50

My uncle likes to carry around a coffee cup with him all day. He's so often seen with his coffee cup that his granddaughter has started calling it "his binkie." She'll run after him, "Grandpa! Don't forget your binkie!" He asked that I make him a binkie he could carry in support of me.


*Yes, totally a Doctor Who reference...

Sunday, December 25, 2011

You Are Not Your Disease

If you have a chronic illness, you've probably heard this at least once. "You are not your disease...." It's a trite phrase that psychologist learn in their training on how to deal with people with chronic health symptoms. But it's so condescending. I never introduced myself as, "Hi, I'm Autoimmune Hypophysitis, glad to meet you." I know I'm not my disease. Telling me that isn't doing any good. It makes them feel better because they've done their duty, so to speak. But it's not actually constructive information. Here's what I think they're trying to say: "You do not need to be ashamed of this."

They mistakenly see our griping as a cry for pity. We're not looking for that. We're looking for acknowledgement of hard work done. We're seeking recognition of the struggle we're going through. I mean, saying I'm not my disease is like saying I'm not the rain. Sure! I know that. But I still get wet. It's still miserable to stand in without an umbrella when it's pouring down. I still have to navigate around puddles and jump aside when a car splashes one onto the sidewalk. Managing my disease is hard work! That is why I'm whining.

I am not my disease, but this disease is obnoxious. It stops me from doing what I want to do. It stops me from expressing myself in ways I want to. It stops me from going the activities I want to be involved in. It stops me from spending time with my family and friends. It stops me from being the person I want to be. It stops me from having peaceful sleep. It stops me from working. It has changed me to my core. I am learning to be an entirely new person, one I never dreamed of being in my worst nightmares. That's rough and scary. I never prepared for this. I never thought this possible. I'm winging it and I have no idea if I'm doing a good job or not. And all of that is due to my disease.

Please don't minimize that.

Saturday, December 24, 2011

Mistakes can be miracles

Dedicated to Donna Ricci

I want you to play a word game with me. Look at the word, "mistakes." Break it apart: Mis-takes. Miss takes. I made a miss take. I missed the take on reality. I took something else for reality that was off the mark. But... why do we all believe that this is inherently bad? Why is a mistake a mark of failure? It isn't necessarily. I have made several mistake in the kitchen that turned out *delicious* and I discovered a new fantastic recipe as a result, that I would not have found otherwise had I not erred. Mistakes aren't always bad. They can be beautiful too. They can be miracles.

You know the story... The scientist accidently left the petri dishes out overnight, uncovered, and mold started growing in them. But lo and behold, the mold was killing what the scientist had been cultivating in those dishes. This was a miracle discovery!!! This was the accident that led to the discovery of antibiotics. The scientist was Alexander Fleming.

We're taught a very bad lesson, that we learn very well, early on in school. And that is mistakes are failure, weakness, and to be avoided at all costs. But I'll let you in on a secret. Our school system wasn't designed to help kids learn. It was to train kids for the dull and boring, repetitive tasks that were necessary for factory jobs. That's right. Our school was actually designed to make kids like machines. Our schools are designed to make kids not think. They're designed to make kids perform. And for ideal performance, we ask kids to be perfect.

This is not only unrealistic and undesirable, it's completely unnecessary too. We use machines to do our dull, dirty, and dangerous jobs. If we need the action to be perfect every time, we use a machine to do that. If it's the same circumstance every time and we need that repeated over and over again, we use a machine. If we need the process to be extremely efficient, fast, safe, and so forth, we use a machine. We automate, and we have been automating since before the Roman Empire.

Why are we teaching our kids from an early, early age that getting things wrong is bad? That's something that simply isn't true! We're asking them to be inhuman when we're teaching them wrong is bad. "1200 years before Descartes said his famous thing about "I think therefore I am," this guy, St. Augustine, sat down and wrote: "Fallor ergo sum." I err, therefore I am. ... The miracle of our mind is not that we can see the world as it is. It's that we can see the world how it isn't." (Kathryn Schulz - On Being Wrong)

The miracle of mistakes is that it leads us to a place we weren't aiming on going. Mistakes lead us out of our known world and thrust us into discovery. Mistakes take us to a place we didn't volunteer to go, but not necessarily to a place we wouldn't choose to go if we knew about it. If we always stayed in our safe bubble of "what we know to be true," we'd never make any discoveries! If we never lost our way, we'd never find new places. If we never had accidents, we'd never know what's possible.

T'ain't nothin' in this world good or bad, but thinking makes it so.

We are dangerously in love with this idea of Rightness. We use our idea of Rightness as justification to take terrible actions against other people. "I'm right. You must do things my way." We use it to justify force. We use it to justify discrimination. We use it to justify taking money and property from one person or group and giving it to another person or group. Every human atrocity can be traced back to some jerk who thought only s/he was right and managed to get enough power to start inflicting that "rightness" on others.

Today, I'm trying to embrace my mistakes. I screwed up in the kitchen earlier today. I went to go fix my mistake and than I thought, No... I'm going to let this mistake happen. I'm going to see what's on the other side of me doing it this way today. I don't know that what I'm about to do is bad. So why not try it? The results weren't "fantastic," like some of my kitchen mistakes. But it was still delicious! I gave it a 3 out of 5 stars.

And that's the other thing: when I let go and relax into my mistakes, I don't give myself such a hard time about them. I don't beat myself over the head like I'm a bad person for making the mistake. I worry less about expectations and outcomes. It's exploration and experimentation time. It can be scary, sure! It's new. Scary can be part of that package. But so can thrilling. And it's dangerous to head out into the wilderness... out into Here There Be Dragons land. It reminds me of the Modest Mouse song, Dashboard: Oh it would have been, could have been, worse than you could ever know. But no one got anywhere by sitting at home on the couch.

Sometimes, those mistakes even keep us safe. Mistakes let us know that we've hit out limit. That we need to be careful. That the situation is more than we thought it was. One of the lessons I learned from watching Deadliest Catch is that "13. Not being cut out for the job isn't a bad thing." (me, Everything I needed to know I learned from Baring Sea fisherman..., contains language not suitable for work) Being a baring sea fisherman can kill you. When mistakes are made and recognized early, we may be able to avoid a situation where we'd really be beyond our depth (pun intended).

We need to end our love affair with Rightness. We need to pay more positive attention to Mistakes. If we do this, we will not only learn more, but we will feel better about it while doing it. What inspired this post was I said on my Facebook page that I was heavily medicated and no longer responsible for what I say. A friend I really admire made the comment, "*hits refresh repeatedly* Oh this should be good." Suddenly I felt intimidated! I was in the spotlight! And I thought, *EEP!* I got to mind my P's and Q's! But then I was all, No... that's the whole point, silly. Your mistakes are going to be funny & unusual. Go with it!! This post is dedicated to her.

Friday, December 23, 2011

How to talk to someone who is chronically ill...

I complain about my health. That makes other people uncomfortable, I know. We're not supposed to talk about our health in this culture. For one, that's something personal. So personal that we even protect it by law with doctor-patient confidentiality. For two, we don't praise weakness in this culture, and admitting health problems is doing exactly that. Or so it seems. But for someone who is chronically ill, it's a little different.

See, if I were you I'd be complaining about my job, or traffic, or stupid people I have to deal with on a regular basis. We are a complaining species. But I don't have a job or a commute and the number of people I deal with on a weekly basis is small. I deal with my health. That's pretty much all I deal with. That and doctors. I'm complaining about what I know.

I'm not looking for sympathy at all. I'm looking for commiseration. I'm looking for a conversation something like this. Let's assume this is my version of "texts from last night".
Me: OMFG... So, last night I was dreaming that I was nauseated. Then I realized that the nausea wasn't part of the dream and woke up so fast... I made it to the bathroom, but GD... My sleep schedule is effing shot now and I feel like hell. FML

You: Yeah, well, you'll have that on a job this size. Do you have anything on your schedule that you have to be at? Is messing up your sleep schedule gonna screw things? Bravo on making it to the bathroom! Clean up is always easier that way. lol
That type of text message would be perfect. It's first says, "That sucks!" in a funny, uplifting way. Next, it addresses the problem, but in a way that focuses on outcomes, rather than the problem itself. I don't know about other people with chronic illnesses, but I don't actually want to dwell on my symptoms. When I verbalize them, I assume you realize what the consequences of having to go through that would be. But I forget, most people stop their whole life with an illness, because they assume it will be over. It's freak-out time when symptoms come up. But no so with me. It's "time to make the donuts," so to speak. So the way the example text ends is a way to acknowledge my achievement, also without dwelling on any of the symptoms.

Sometimes, I'll admit, I seem inconsolable. I'm a sobbing mess. My world is falling apart around my ears (or so I believe), and, "Things are never gonna get better!!!" (Yes, that's an actual quote.) Here's a sample response for those situations.
Me: But thing's aren't going to get better. This disease is degenerative! There's nothing they can do!

You: Alright. You're doomed. But you know what? You're still amazing. You still shine. I still want to be around you. This doesn't diminish who you are. It may make it harder to be who you are and express that... but we're all grateful for what we can get. Any little bit of you is better than nothing, which is what we had before. Hang in there. It may be a downhill slide, but you are still a beautiful soul. So what if it's impossible? Make it look awesome...

Me: But I'm broken! They can't fix this and all I'm doing is getting sicker! I'm a money pit and a a burden to everyone around me!

You: Hold up, there. There were no promises when we were born that we'd be healthy. There were no promises we'd be financially secure. That's life. We're all stumbling through it as best we can. It's okay that your best isn't good enough sometimes. Or even a lot of times. That's okay. Life isn't a race to be won... it's a marathon to be endured. We want to help pick you up. We want to keep you with us. We're happy to pick you up. If we had to stand in line to buy tickets, we would. So don't worry about what it's costs us... You're important enough. We do these things gladly.

When we stumble, help us laugh at it. When things are rough and we complain, admire our spirit and our hard work. When things are impossible, dare us to dream. When we despair about what we have lost, remind us it's not about winning.

Don't be afraid to talk to us, please. We do feel very alone in what we're going through. But we know you're looking at it from the outside. We know you can't share our perspective on this. We're not asking you for that. We're asking you to see us despite that. We're asking you if you can look through or illness and still see the person inside there. We want to know you haven't give up on us even though we feel miserable. We want to know that just because we feel miserable, it doesn't mean we are miserable.

Yes, it is difficult to know what to say. Without a doubt. But I hope I've given you some ideas here. I hope this helps your conversations with folks like us.

Good luck.

Wednesday, December 21, 2011

The mind is a muscle

A moment of reflection on this, the shortest day of the year. One of the things I'm quickly learning by doing this blog is that my mind is like a muscle. I need to practice and exercise it if I want to strengthen it. We already know this. It's why we go to school. But I'm talking something much more basic: ripping my awareness away from all that is bad and that scares me and focusing instead on what I have and what I can do. This is more difficult than it sounds. We're programmed to watch for the tiger. If something scares us, we'll stop and fixate on it until we determine we either have to run, or we can go back to what we were doing. It's primal. And when you can't run from it (like a health problem), you can't fix it (like a health problem), it's going to kill you (like a health problem), well that's a m*therf***ing TIGER. AHHHHHHHHH! That's an easy way to justify pulling the covers over my head and never leaving the bed!! But that's not living.

It's difficult to rip my gaze from the tiger. When a symptom comes up, I'll have a panic attack because it's a reminder of how sick I am, overall. Then I'll slip into a pit of self-pity as I mourn my loss of health and wallow in how miserable I feel physically. I can get stuck there. It's never going to get better. It's only going to get worse. These symptoms will come more often until it's all I know and it will consuuuuuuuuuuuuuume me.... This is not an unrealistic thought pattern. I had 4.5 years swallowed up by a soul-destroying migraine that followed that pattern. It's a story that's familiar and believable to me. And it's a great reason to want to give up. But thinking like that does me no good, even if the story is true.

So instead, I gently but sternly tell myself to get my act together. Clean up whatever mess my health collapse created and then go rest because I need and deserve recovery time. And then, as I rest, I do comforting and nurturing talk to myself: "Bad things happen. It's okay. You did very well for what you had to go through. Yes, I know you don't like this. I don't like this either. We're doing what we can to make it better. We're going to the doctor. We're taking our medication. We knew this might happen. We can get through this anyway. Even as you lay here broken, you are strong and powerful. Remember your spirit. Remember what you can give to others. Remember that when you feel better, you will do better."

When I have a health collapse, it can feel like the world is ending. Sometimes, that's actually true. So it's not unreasonable for me to freak out. But I try to limit how much I freak out because, though freaking out feels right, it's not very constructive either. Hey! You're about to die! Alarm! Alarm! Alarm! I only need that alarm to go off once. But my body will continue to throw up that alarm until the physical need is addressed. Sometimes, that physical need can't be addressed, like nerve damage. Hey! The nerves are dying! Pain! Pain! Pain! I can't do anything about my nerves dying. But my body's going to scream about it anyway. It does me no good to join in the chorus. The tune is old and I'm tired of it.

Yes, I'm sick. Yes, I'm losing my eyesight. Yes, I'm losing my ability to control my hands. Yes, the tiger is here. "Rip away your gaze. The tiger is not going away. You are going to get mauled. Expect it. Prepare as much as you can, but know that you will fall short. That's okay. This isn't about winning. This is about staving off the inevitable. Anything you can do despite these circumstances is a win. Be cautious, and just hang in there as long as you can."

I exercise looking at the constructive and the positive. I exercise being a person who conveys a message of strength against all odds. I exercise not getting excited, even though the moment may call for it. I exercise not reacting to my first emotion. I exercise looking at what I can still do. I exercise finding my options. I exercise looking for the funny or the bright side. I do this with grim determination, because it's what helps.

It's hard work to maintain a positive attitude. There's a lot to be upset about. Upset is easy. Calm is difficult. I get a spike of migraine pain, and suddenly, my day is thrown into turmoil. I need to alter my plans, NOW. But, oh! I need to go shopping! But, oh! That will make my head worse! But, oh! I need food and caffeinated beverages to treat the migraine and we're out of everything! Yeah, I can drive myself nuts if I'm not careful.

I need to switch my state of mind. I need to find my calm and hold on to it. That takes practice. Slowing down and thinking things through is difficult when there's alarm bells going off. The tiger is coming for me, and I need to relax, not tense up. It's okay. We have medication. We'll start at Advil and Phenergan and then move up to the big guns if need be. We get a 30 minute window at least, so the medication can kick in. Take the first round, then relax. We have nothing to worry about until the 30 minutes is up. Then we will take the next indicated step. This can be managed. You've done it before. You know what to do. We can get through this. Yes, the tiger is here. It will hurt. But not forever. You're okay. Relax into the pain. It will pass soon enough.

That's work! Slowing down when I'm scared? My body is telling me to run! Relax into the pain? Are you crazy, Lady? There's nothing relaxing about pain! Calming down when someone is screaming at me? That's when I need to arm myself for battle!

Let me tell you something. Feelings aren't facts. Just because a situation may feel a certain way, and it may feel right to act a certain way, doesn't make it true!!! It's a difficult thing to rip ourselves away from, our feelings. But they aren't always good for us. I will acknowledge my feelings. I don't stuff them or deny them or act like they don't exist. I look at them and go, Yeah... that's a reasonable response. But is it the response I want to take in this situation? Does it serve me to behave this way? Is there a better way for me to reach my goals? How do I want to behave here? It reminds me of the line from the MGMT song, "Kids": Control yourself. Take only what you need from it.

I will not be able to do these things unless I practice them. I need to practice my calm in every interaction I have so that in my moments of crisis, I can handle myself. Every time I feel upset, I need to relax, slow down, and think things through. I practice this, not out of obligation, but because I want to be a better person. No one expects me to do this. I'm doing it for myself so I can hold myself in esteem. This is hard stuff. And as a culture, we celebrate drama. It's all over our TVs, in our books and movies... it sells. But I can't be like that. I have to practice reservation and caution because that's what keeps me safe and able. Just like I need to work out the muscles of my body to keep me safe and able, so do I need to work the muscles of my mind. And tomorrow, I will be stronger for it.
“The man with the clear head is the man who frees himself from those fantastic “ideas” and looks life in the face, realizes that everything in it is problematic, and feels himself lost. And this is the simple truth — that to live is to feel oneself lost — he who accepts it has already begun to find himself, to be on firm ground.”
- Ortega y Gasset

Tuesday, December 20, 2011

Dealing with creditors

I have a lot of creditors. It's not for material things or credit cards. It's medical debt. It's services I had to accept in the moment to survive, and services for which I simply cannot pay on the other side. It's irresponsible. I get that. I don't like that it's this way, but it's the way it's got to be for now. That bill for the additional lab work? Yeah... I'm not paying that. Okay, send it to collections. Okay, put it on my credit report. Okay, lower my credit score. Okay, blow up my phone. I understand these are the consequences. But the answer is very simple: you can't get blood out of a turnip.

I talked to a very nice young man the other day. He was a creditor. He called me up and was all ready to do his spiel: "Now we'd like to arrange a payment plan because otherwise this is going to affect your credit score..." I always have to restrain myself from giggling at this point. If he knew my credit score, he wouldn't even bother with the threat. My credit score had been in the toilet since my three night hospital stay in 2003. I wouldn't be surprised if it's single digits. I am a walking money pit. I'll own that, no problem.

So I let him talk and then very calmly explained: "Look, I'm sorry. I know this is your job, but I can't pay this. Do whatever you need to do. I'm waiting for someone to sue me and take me bankruptcy court, that way I don't incur the court costs for filing for bankruptcy. I'm disabled and have been since 2002. I got nothin'." I've found that the hostility and gruff quickly falls away when I own the situation and acknowledge it's bad.

There's no point in trying to hide or lie or evade. Yes, I owe the money. If I can repay it someday, I will. Now is not that time. If I were to go before a judge, they'd look at my creditors and say, "Sorry, Charlie... there is nothing to take from her. We can't force her to starve. We can't force her to be without life-sustaining medication. We can't force her into hardship. You're going to have to eat this one." And then for my part, I have to wear the stigma of bankruptcy until such time that I can prove I've gotten my life back together and am responsible again. That's fair.

I already have to balance the cost of vital things like medication and food. I have to be very careful to make sure I can afford things like my Neurontin, because skipping a few days means seizures. I will bother other people to afford my prednisone. That keeps me alive. What I try to do is live within my limited means. Sometimes I screw up. Sometimes my disease screws me up. I am doing the best I can with what I've got. I'm trying to improve on what I've got so that I'm making progress. No more can be asked of me.

And human beings understand that. When a new unknown number pops up on my caller ID, I know what it's for, usually. Sometimes it's a wrong number. Sometimes it's a computer sweepstakes. Mostly, it's bill collectors. I talk to them the first time and let them know the situation so they can have it on file. Then I add their number to a long list of "Ignore" in my phone with the ringer set to mute. I don't ever need to be upset by this. There's no need to panic. There's no need to run. Mia culpa... let's move on.

As I said, the young man was very nice. He quickly changed his tune when I explained the situation. He did very well to explain his part in the process (which includes putting me in the cue for the computer calls at random times). He too was sorry it had to be this way. I told him that I understood he was just doing his job, and that it was all good. We wished each other happy holidays, and that was that. No big deal.

That's how I've learned to deal with creditors.

Monday, December 19, 2011

How I came to learn I was disabled...

I am outraged by this article: A migraineur entrepreneur: yes, it can be done! This is another example of someone claiming disability and then setting an unrealistic goal of achievement, when by their own admission, they do not display the characteristics of a disability at all. It's the equivalent of saying Kate Moss is an average beauty, and all women can be her. This woman claims she couldn't work a full-time job but then goes on to say she managed 100-hour work weeks. Um... No.

I learned I was disabled when I went into a mandatory unemployment seminar. There, I was told by the leader of the session that if I'm not able and available to work from the hours of 9am until 6pm, I could not count that as a work day. That is, if I was sick in the morning and had to come in late, that would count against me. I went up to the leader and talked to him afterwards. I told him that I'd never been able to do that in my life. He said that I had been improperly collecting unemployment and I would have to pay that back to the state. He also suggested that I talk to VocRehab to see if there was any way to find a job that would work around my regular illnesses.

I went down the hall and I spoke with VocRehab. The lady there was very nice. She asked me, "Well, what can you do when you're sick?" I replied, "Sit in a dark room with no noise and pray for mercy? I get migraines." She pondered that a moment then asked, "When you're at your worst, can you look at a computer screen?" No. "Can you read a book?" No. "Can you answer the phone?" Sometimes. "Can you talk to someone in person?" Sometimes. "Are you in pain right now?" Yes. She looked at me blankly and said, "Yeah, we can't retrain you for any job that could handle that. You need to go talk to Social Security Disability."

I was shocked. I lived in Seattle at the time, and I was part of the IT industry. The culture there, thanks largely in part to Microsoft, was that 10am was a perfectly acceptable time to roll into work. My boss regularly didn't show up until noon. But it was also understood that we worked long hours and a speeds that put 3rd party companies we hired to shame. They had always been willing to work with me and work around my doctor and chiropractor visits, my need to end the work day early or start it late. As long as I put in my 40 hours, they didn't care. So I never knew. I never realized.

And then it all became moot as the migraines went daily. I had, sometimes, a small window of a few hours where I was not in pain. But mostly I was in pain, every day, all the time. Sometimes the pain would even invade my dreams and my sleep. It still does on occasion, like last night. My migraines are triggered by barometric pressure changes. Seattle was a terrible place for me to live. The constant rain six months out of the year was generated by low pressure systems sweeping in from Alaska. The barometric pressure was in constant flux, like a roller coaster: up one day, down the next. That roller coaster would manifest as a migraine.

At first, if I'm lucky, I'll get a visual effect: a little white dot, about the size a a pixel, starts to fly somewhere in my vision. It moves like a fly, but it's tiny, and bright white like it's made of light. In it's wake is a black tail. Then all the lights get brighter. All sounds get louder. It's as if someone is turning up the volume on the world. I can hear my cats walking on carpet and it sounds like children romping in piles of autumn leaves. The squishing of the carpet fibers make a crunching noise. With light, it's like when you walk from indoor lighting out into the afternoon sun on a snow day. The sudden light from the sky and the ground is too much for us. We squint. We recoil like a vampire. The day star is mighty. Headlights in the dark are like that to me. Throw on top of this mix the regular, base-line pain of the migraine... that pain is very much like your worst hangover headache. But add in there random spikes of pain that suddenly strike like an ax blow to the head. Thinking becomes near impossible in those moments. Parts of my language center will shut down so that it's difficult to remember even the simplest words. I'll have to say things like, "make the head hurtiness stop," because I can't recall the word "pain." Or I'll have to make new words like, "Where's the ca-chunka-chunka?" for, "Where's the stapler?" (because that's the noise a stapler makes). Oh, and I won't even go into the associated nausea & its consequences. Yuck.

Working? Not an option. Not even part time. I was offered a paying job with Wego Health to help manage their migraine community. They were fully aware of my migraine disease and were willing to work with me anyway. All I had to do was manage a small blog, log in to the system four hours a week. If I couldn't manage that some weeks, they would understand. I still had to bow out because I was just too unreliable at the time. Every day I was trying to make the pain stop or lessen in any way I could. That was the only thing that mattered. If I could get free of the pain, all things were possible. When I was in the pain, nothing was possible. Even with a prescription for oxycontin, I still had to go to the ER on average of once a month, because the pain got to more than I could deal with at home.

So when someone says: "In the very early days of my blog, I talked about how my headache specialist recommended I not work a full-time job right out of graduate school. My migraine episodes were frequent and severe enough that a 40 hour/week job was not for me---at least that’s what was suggested to me." And then goes on to say, "I spent the first few weeks of business working well over a hundred hours a week..." and, "I was in the shop from 9 until 9 every day..." I call foul. You have got to be effing kidding me. Do you not see what you even wrote??? Normal full time hours are only 40 per week. Not 9am to 9pm every day.

Unreal. And that this story would be promoted as a "you can do it too!" just breaks my heart. Something like that is difficult for the average person, let alone someone who really is debilitated from migraine disease. That they would set the bar that impossibly high from the word go and then claim that it was done by someone who was disabled? I'm only glad she was so boastful of her accomplishments! I would have been feeling pretty miserable if I thought I should have been able to do that too.

Real dreams and accomplishments are possible in disability, but not what this lady is talking about. When I am able to do the same, I will let you know how I got there. But in the meantime, caveat emptor---let the buyer beware. Not everyone out there is giving you the real deal. Whenever anyone tries to tell you, "you too can...", take a look at how they themselves did it and see if it's reasonable. Look at their actions, not their words.

My hair is on fire. I'm going to go put it out now.

Special thanks to Brigg Baldwin for editing.

Sunday, December 18, 2011

Articles that restore my faith in humanity...

I am often faced with fear of repercussion for speaking my mind, here or anywhere else. It's easy to judge. It's easy to follow the party line. It's safer. It's the nail that stands up that gets hammered down. A quick Google search by any one of my doctors, and I could quickly be seen as a "problem patient" before the word go. I could easily be branded a rabble-rouser... a trouble-maker. Discrimination is rampant and has very real consequences on my access to care, let alone the quality of that care. But when others speak out too, I take heart. I'm not the only one standing up and pointing out the emperor has no clothes. Here are some choice articles from doctors and law enforcement about how prohibition is harming us all.

From, Legalizing marijuana: Police officers speak out:
[Once] again, the inbox contained a much greater number of pro-legalization comments than those supporting continued prohibition. Here’s what I got from MacKenzie Allen, a retired King County (Wash.) sheriff’s deputy who was also formerly with Los Angeles Sheriff’s Office.

“I think the first thing with which we all must come to grips is the fact that drug use can never, will never be done away with. Humans have been intoxicating themselves (as have some lower orders of animals) throughout history. We will never “arrest” our way out of this. The drug problem is a health and education issue, no less so than alcohol and tobacco. We’ve been fighting the “War on Drugs” for more than 40 years. It has cost a trillion dollars and thousands of terminated and/or ruined lives with nothing to show for it but more drugs, cheaper drugs, higher quality drugs, more corruption and infinitely more violence. We need to legalize, regulate and strictly control all drugs. Continuing on our present course is insanity.”

From the first part in a series, Tales From the Trenches in the War on Pain, comes this strong supporter of pain relief:
Although I practice child, adolescent, adult, and forensic neuropsychiatry, the majority of my clinical practice is in the field of pain management, and I am a strong supporter of using opioids for the treatment of chronic noncancer pain. I have come to this position after approximately 11 years of face-to-face patient interaction, along with ongoing intensive review of the medical and scientific literature dealing with opioids, and the other forms of analgesic medication, as well as the neuroscience behind chronic pain disorders.

For several years now, and especially over the past several months, there has been an ongoing barrage of news media attention focusing on the fact that overdose deaths due to prescription opioids have reached “dangerous” or “alarming” levels of epidemic proportions. In response to these statistics has come an almost mob-like crusade to track down and punish incompetent, unethical, “pill mill” physicians and their practices, which is justified and one would think this could be easily attainable. Inexplicably, these objectives do not seem to be that easy to accomplish. Why?

At the same time, there also seems to be a push to punish and/or eliminate the pain physician who by some mysterious standard is considered to be over-prescribing pain medications, and/or prescribing medications in “extraordinary” or inconceivable combinations. Of course, these assertions fly in the face of science, and the experiences of the untold myriad of patients who literally have new, functional lives, less troubled by the specter of chronic debilitating pain. These patients still have pain and they always will suffer from it; however, with the right combination of medications — including and especially opioid medications — they once more can experience lives that contain a modicum of tranquility.

As stated above, I am a neuropsychiatrist. I am certain that I see great medical benefits bestowed upon the vast majority of my patients with chronic pain who are prescribed opioid analgesics. They and their families tell me that this is so, and I believe with an objective eye that I see the benefits as well.

From Chronic Pain in America is a National Disgrace, we learn that:
“Federal and state drug abuse prevention laws, regulations, and enforcement practices have been considered impediments to effective pain management….” Among other barriers, they say “Twenty-nine percent of primary care physicians and 16 percent of pain specialists report they prescribe opioids less often than they think appropriate because of concerns about regulatory repercussions.”

The report observes that, “Ironically, while many people with pain have difficulty obtaining opioid medications, nonmedical users appear to obtain them far too easily.” However, the panel also states in italics for emphasis that “the majority of people with pain use their prescription drugs properly, are not a source of misuse, and should not be stigmatized or denied access because of the misdeeds or carelessness of others.”
(Emphasis mine.)

And one of the most hopeful pieces of information I've seen, from Myth-Representations of Opioids & Their Risks is:
Forest Tennant, MD, has assembled an extensive array of documented cases in patients with chronic pain, ranging in age from 30 to 83 years, who have responded well to and thrived on opioid analgesic therapy for from 10 to 35 years. He observed relatively few complications of the therapy, and those were easily managed.
(Emphasis mine.)

Here we have officials with good standing in the community who are laying that at risk to stand up for what they see is right. That warms my heart to no end. They have so much more to lose than I do. In this video from Freedom Watch, and the first article linked here, we learn that there are professional law enforcement individuals losing their livelihood because they said something in favor of legalization.

There are doctors being pushed out of their practice. There are patients who are suffering. There are non-violent citizens made criminals because of putting something in their body. There are people of good standing being marginalized for speaking out. But there are those still willing to stand, still willing to say, "This is wrong..."

I thank them for it.

Friday, December 16, 2011

Pain is torture

I may get myself in trouble for speaking out on this. It's going to be difficult to explain. It's about my relationship with my pain. It's about my relationship with narcotics. It's about my own fears. It's about how I don't know to talk to people about this stuff. *I* know I'm not an addict. *I* know my pain is real. I know there are dangers, but can't you see I'm already in really scary territory? The landscape is pain. The only question is: how much?

I'm a tough girl, but when my pain gets to a certain point, I know there is nothing I can do that will make it better. I know once it gets to that level it can sit there for months. It did this past year. I was stuck in bed for all of last spring. I started this blog to keep myself from going crazy from pain. I was so miserable, and I had to turn my thinking around somehow. So I forced myself to find the bright side and teach others how to do the same. I promised myself that I had to write positive, constructive, cooperative, empowering posts... Because I had to learn how to be that in my life. I had to hang on... somehow. I was trying to survive torture by my own body. I knew it would pass once summer hit and the dryness returned to the Front Range. I just had to make it through. The key to walking through hell is: don't stop.

Obviously, I made it through. But that's not entirely true. All of me didn't make it through. Each time, it's a little more innocence lost, a little more bitterness gained. I lose more confidence that life can get better. I lose faith that anyone in authority cares. I'm more shy. I'm more likely to keep you at arms length while turning on the charm. I'm trying to hide that I've become an Ice Queen. I don't mean to be guarded. I just know eventually I'm going to lose my $#!+, and I need to learn first if you can handle that. I need to know that I've earned your friendship so that I won't lose you when I lose ahold of me.

The pain I have to deal with scares me and rightly so. I can handle epic levels of pain and still function. But my pain can go beyond my ability to cope. There's that place where there is nothing but pain. It's hard to even have a sense of self because everything is pain. The pain is so big, it swallows all of existence. It's complete helplessness. THAT is what scares me about the pain: being put in a position where it would be difficult for me to save myself from a burning building. Being in pain for so long that it would be difficult for me to have the motivation to save myself from a burning building. You can't have experienced this level of pain or length of pain without wishing for death. It's just natural: passive suicidal ideation. I'm not going to kill myself, but I'm not going to stop the process should it begin naturally. Death does not look like a bad option when dealing with that kind of pain.

The problem is, the desperation of drug-seeking can look EXACTLY like the desperation of pain-avoiding.

It has been a struggle to get the medical community to agree to the point of medicating me properly. I continue to try to get proper treatment, and by that I mean that which makes me more functional, healthier, more reliable, more responsible. I see me able to take care of business because of those pills. I'm not looking to avoid reality. I'm looking to rejoin it. I want to beg of them: "Please let me have them!" But desperation, however valid, looks ugly. So I'm patient. I go through the proper channels. I try to earn care by building a relationship based on full disclosure and responsible behavior. There is no other option. But even that doesn't seem to work. Even when it's on a scan and the blood comes back in my urine, I get the snippy comment: "Well... here's what you came for..." in regards to the narcotics.

Yes, I came in for that. But legitimately. Honestly. For realsie. What do I have to do to be treated with some dignity? Yes, it is bad enough to require that drug. I'm sorry that it is. I'm sorry that I'm bothering you. I'm sorry that I have to be in this state. I'm sorry I'm powerless to overcome it. I'm sorry I can't think it away. I'm sorry I can't "positive attitude" or "clean living" it away. I'm sorry a few laps in the gym won't make it go away. I'm sorry my best isn't good enough anymore. It used to be. I remember it. I'm trying to get back there. But it's a struggle. And each time I have to endure another flare without relief, I lose hope in the fight. Yes, I covet those little pills. But not for the same reasons as an addict.

Are narcotics dangerous? Absolutely. So is prednisone. So is Neurontin. So is Advil. I'm on all of these. When any of these chemicals are used responsibly, they serve a purpose and they help. The help instead of harm. Or, at best they help more than they harm. Do I need narcotics? Depends on what level of functionality you think I deserve. If you think that my limiting my activity to 1,700 steps a day (by my step counter) is good enough, then no, I don't deserve narcotics. Do you think I deserve to be reliable enough physically so that I can work full time? Then yes, I deserve narcotics. Will taking narcotics make me an addict? Not according to the FDA.

I have to believe that it's possible for me to get pain control. I have to believe there is going to be some doctor out there willing to stand up for me and say, "Yes, give this woman pain control. We know her condition is crippling. She needs this. It is her right to have it. She can be trusted and believed. She deserves this care. I give my word as a physician that we know her pain to be real." I have to trust that this is just a "hurry up and wait" time. I have to trust that there is a light at the end of the tunnel even if I can't see it. I have to believe that. Otherwise I panic that there's no way out, no end. Those thoughts are anathema. I cannot let them in my head.

The pain is torture. Not just physical, but mental and emotional. If it were some useful pain, that would be one thing. But this is the pain of nerves dying. This is the pain of a nervous system disease we don't have the science to control yet. This is pain we have no other way to control.

Mercy, please!

Wednesday, December 14, 2011

Medical PTSD

It was my brother, an OIF Veteran, who recognized my behavior pattern as PTSD. "Pam..." he said to me very gently, "you react to things just like I do." It was if the clouds parted and suddenly everything became clear. I had PTSD from my medical experiences. I've gone into details with my counselors and one close friend who also understands PTSD first-hand, and that has helped a lot. Each of us has it from a different source, but if you change the words around, the situations are the same. The feelings are the same. The panic about doing things that could potentially help you... Being so overwhelmed by something so simple that you freeze and shut down. Wanting to run and not knowing where to run to so just vibrating in place. Yeah... it's real. It's crippling. It's a disease. Right now, I need to face having an MRI, and I'm terrified.

I'm not claustrophobic. Nothing that straightforward. It's not the medical procedure itself. I'm actually worried that the results will be negative. They're always negative. But that's not unusual for my disease. From what I've read this disease only presents on a scan about 50% of the time. I'm worried that this is going to be used against me for the purposes of denying me care. "You're just crazy. You need to come off your medication and you'll be fine." That's what the last doctors said. That was based off of test results that every other doctor has looked at and said, "No, that's an abnormal response." But they're not the doctors taking care of me for this...

I was told so long for a child that I wasn't sick. That I just needed to try harder. Then I get really sick and find out, "You should be in a coma. I don't know how you're up and walking around!" Well, this isn't far off from normal for me, doc. This isn't that bad. What do you mean I'm a death's door?

It was tested by three different labs. One was a cardiologist. One was the Navy. One was an endocrinologist. This was over a 6 month period. I was later retested in Everett and Seattle. I was retested in St. Louis. I was retested here. All of that should have meant something. But it didn't and she wan't listening to me when I told her I was getting sicker without the medication.

Now it's an MRI and I'm betting that it's going to come back clean, and these new endocrinologists are going to start singing the other doctor's tune: you're fine. You're just delusional. None of those symptoms ever happened. All of those previous doctors didn't know what they were doing. Stop bothering us, kid. You're not that sick...

Really? I landed in the ER with a blood pressure of 80/40 from vomiting and that was just what... Magic? That's not an adrenal crash? I just don't know how to vomit properly? Please enlighten me so that I may do these things the right way and not waste your time.

But I can't say any of that, now, can I? The easiest thing a doctor can say is, "No." That's the shortest complete sentence in the English language, by the way. No. No, we don't think you have this disease. No, we're not going to give you access to treatment. No, we don't have access to the antibody test that would show your disease. No, we have nothing left for you. Whatever it is you have going on? Not our problem. Go away.

And then what do I do? Do I go back to my old doctors who diagnosed me? They're in Seattle and I'm in Denver. How do I accomplish this? Can I even muster the strength to try to see this through? Do I give up on this side of it for a while and instead concentrate on the small fiber neuropathy?

Oh, and that 50% chance it may actually show on my MRI? That feels more like 0.000005% of a chance. I though the abnormal blood tests would be enough, but apparently not. So now I don't know what it will take, and that's terrifying. I thought I had a leg to stand on, but the ground gave way beneath my feet.

Well, here goes. Off to the appointment and we'll see what happens on the other side.

Tuesday, December 13, 2011

Self-pity is the enemy!!!

I admit, I do love to wallow in some self-pity sometimes. It feels sooooooo good to feel sorry for myself. "Look at that miserable lump. See how worthless she is? Why, I'm surprised she can even wake up in the morning... She'll never amount to anything. Look how frail she is. What a waste of human life." Anything I've done before? Doesn't matter... That was luck. I've secretly been faking it this whole time and no one was the wiser. I never was an all-powerful wizard. I was just a gal in a funny hat. I'm going to sit and pout about how I never get anything that I really want and that's just proof how miserable I am. My life is hard because that's the best I deserve. I should be glad it's not worse now and when it does get worse, "Well... then you'll really know how awful you are." I cannot tell you how dangerous this type of thinking is.

I have two good options here. The first is pretty straightforward. If I'm being a lump because it's a bad health day, that's a free pass. And NO ONE, not even myself, gets to talk nasty to the sick person. There is no negotiating with a disease. (Melody Beattie, I believe.) And if there's no way to budge the disease, what use is harassing the person held captive by the disease? So option one: free pass.

Option two: do something, anything constructive. If it's not option one, it's a reasonable (I won't say good) health day. I tell the voice(s) to STFD, STFU; I'm not hearing it. I'm going to do something constructive and then they can eat crow. Really easy for option two? Take a shower. It doesn't matter if I have to sit in the tub to get clean. I will get clean. I will have done something productive, and something to take care of myself, in one event. One constructive event leads to another: clean hair means hair care. Means making myself look good in the mirror. Means brushing my teeth and putting on a little make-up, which can change sick-looking into sexy-dusky-eyes instantly. I have done something productive. I am not a lump. I am clean and look appropriate to leave the house. That's something.

The thing with the shower is I can go on auto-pilot. The water on my skin stimulates my nervous system, which is a physical difference to whatever was going on before. Then, I can't take a shower without washing my hair, because that just feels yucky and weird. Pretty soon, it's not so hard to be responsible and wash the rest of me (which also feels better than just getting soaked). Then I can relax a little while and be proud of those small steps. "I can handle this. It's okay. I can try a little more." And I just do little by little until I've finished the routine. When I come out sparkly clean on the other side, and I can see that in the mirror, I can actually hold my head up a little more.

I'll do one small constructive task, even if it's just put three dirty dishes in the dishwasher. I'll straighten up some small area. If I'm feeling really adventurous, I might even do a load of laundry. But that's a big commitment on days like these. If at all possible, I'll get out of the house to run an errand. That may seem like something really big, but getting out from the same four walls, doing something that I've done a thousand times like driving the car, that doesn't have to be so big. It's actually even better if I have to drive a far distance---more than 30 minutes each way. Then I can just have me and the road, the scenery, and upbeat music on the stereo for a while. No decisions. I'm just getting there.

I break things down to the next indicated step. I don't worry about anything but the step in front of me. Twenty minutes from now doesn't exist. What's right here? What's right now? I've arrived at my destination? Okay, which store was I coming here for? Go to that one. What was I here to get? Get it. Am I set to return home? Okay, get a bottle of water because you're thirsty, first. Now ready? Okay, go home, triumphant. Deed well done. Reward yourself with some Facebook games and then we'll see if we can't get more done later. But don't worry about that until later.

Then I check in with the previous nasty voices. Their mouths are too full of crow to bother me much more today.

Monday, December 12, 2011

Nose pressed to the glass for pain relief

   Artwork © Damien Goidich, used with permission
I hate pain. Not just for the sake of hating pain, but for how anxious it makes me. I deal with pain on a daily basis, but my condition now is far better than it was during the 4.5 year migraine. So when my body decides it's time for me to be in that level of pain again (thank you, kidney stones) I get nervous. This is life-stopping, house-bound levels of pain. Even with pain pills a sudden spike in pain can cause me to yelp. The spikes come without warning. Suddenly a dull 2 of pain shoots to a 7. It startles me. Then I get anxious waiting for the next spike. I try to stay calm, but I know it's coming. When it does the world stops. Then it goes away and I can come back. My heart races and I try to relax, knowing that if I brace myself, that only makes it worse.

I try not to think about when this is going to end. That only leads me to question if it will end. It's a known complication of my pituitary disease. The pituitaries affects the adrenal glands, the adrenal glands affect the kidneys. There are enough kidney stones in both my kidneys that this will be a repeat performance. They started when I was 17 and for a while there I got them like clockwork ever 3 years in the spring. They hadn't bothered me for a while there. Now they're back in force.

The anxiety comes from not knowing if I can manage the pain. That's my BIGGEST fear: that I will be in pain, and they won't want to give me the medication that can take care of it. They'll think I'm exaggerating, drug-seeking, hysterical, crazy, criminal... That's what I have to face every time I petition a doctor to deal with my pain.

The situation with my kidney stone almost went really badly. One of the nurses though it was cute how politely I asked for more pain pills. He then shared that at the nurses' station. The other nurses immediately got scared and started whispering. The nurse then told them that he didn't suspect me of anything because I still had pain medication left over from my first doctor's visit ten days ago. I was just following protocol that if it didn't get better by a certain date, I should go in for a CT scan. But just because he thought I was cute, I was almost branded a junkie. I'm just lucky my pain tolerance is so high that I don't need much medication. Otherwise that situation could have gone a lot worse.

The kidney stones remind me where my pain has been, and where it could be again. It reminds me I'm still terribly vulnerable, still terribly frail. "I can hurt you any time I want and there's nothing you can do about it." Talk about an abusive relationship! I'm drinking water like a mad woman and pissing like a race horse. I've swollen up ten pounds because of the prednisone. My kidney stones are calcium oxalate, so I already avoided those in food sources, but I'm loathe to give up chocolate and dairy. (It's good news for my bone density, however.) I live in constant fear of what my body is going to do to me next!

"You'll get through this... it won't be this bad forever..." Sure, but someday, it might be that bad forever. It was before, for years. Not everyone dies peacefully in their sleep. And even though there is end-of-life "comfort care," the doctors will sure let you suffer in agony for a long time before they let that be an option.

Ironically, I've been more productive with the kidney stones than before. The pills I have for my kidneys also takes care of the pain I have from my nerves. I'm drawing, I'm painting, I was able to help one friend with his resume and another with his college essays. I've been able to do more writing. I can rely on my hands to not torture me. The pain pills give me freedom.

I moved across the country TWICE to find a location where my pain was tolerable enough that I would be able to muster through without pain pills. Not because I wanted to. Because I had to. No one would give me access to medication that gave me pain control, and I wasn't going to break the law. The sad thing is, it's easier to get these drugs from the street. Drug dealers don't require CT scans and urine exams. Only problem is, one 5mg percocet---roughly 4 hours of pain relief, if your drug tolerance is low enough---meant four years in jail for one of my dad's clients. Their life is ruined now. That will haunt them forever. After being a felon, you lose certain rights. They are a second-class citizen now, literally. All for four hours. On the other hand, my migraine pills are $36 a piece and insurance only covered 6 a month when I needed 24. The non-narcotic pain pills are $27 each and I'm to take 3 a day. Narcotics are $4 for a month's supply, but trying to get a prescription... fugetaboutit.

I knew the humidity and barometric pressure changes made my pain worse. I hated giving up the doctors in Seattle that had taken care of my other issues so well, but the pain issue was just too overwhelming, physically and economically. So I moved to an arid climate at elevation so the change in pressure isn't as severe when it rolls through. The move helped significantly. Mind you, that doesn't mean I'm functional where I am now. It means the difference between being able to get out of bed or not, which is totally worth it. I can walk to the bathroom with out screaming. I can treat my migraines with ibuprofen instead of that expensive medication. I have my bed-ridden days, but they're not as frequent out here. It's thanks to my father that moving was an option. Other people aren't as lucky.

I want to be able to work. I have that capacity if I have pain control. I have the desire, the skills and the value as an employee to get work, even in this economy. If I had a body I could count on, I could do that. If I knew that I could get up in the morning, take a pill and not have to worry about some attack during the day, I could be NEAR-NORMAL. This isn't about feeling high. This is about feeling good enough to take care of business. This is about being productive, instead of being a lump on the couch counting off the minutes until it's over. This is about getting OFF Social Security Disability and being a contributing member of society again. Would I rather not have to take anything to be functional? Absolutely. But that's not realistic.

I know my doctor's hands are tied. I know that it could mean his/her license & livelihood just because the numbers look bad. I'm not worth that risk. Doctors don't go into business to be harassed by the government. No one wants that. It's easier to just let me, and others like me suffer. I don't blame them for that at all. They're doing the best they can. They're under ENORMOUS pressure. And I know it has to break their heart. That's why so many like me are simply ignored and told not to make follow up appointments. "We have nothing left for you..." is what they say. They do have something left for me, but they're not allowed give it. It's all the same in the end.

So each time I have to take another pill for this pain, I know that's pain relief in the future that I'm losing. I know I need the pain relief now: the kidney pain stops me completely. But I'd like to be able to stretch this medication out as long as possible. I know that's wrong. But each pill is another 4 hours of relief from my daily nerve pain. Each pill is 4 hours of solid work I could get done. Each pill is another flare that I don't have to suffer through in silence. I horde them as much as possible, knowing that's not what I'm supposed to do, but the fear of future pain is too much. I know more pain is coming. I want to have something to take care of it when it does. So if the pain isn't too bad now, I'll suffer through it. I keep the pills for when the pain is incapacitating. If the pain interferes with me walking to the bathroom, then it's time for a pill. Because, I've been to the ER with flair pain and migraine pain, and they don't give out medication for that. They have to see it on a scan. They have to see blood in the urine. Otherwise you're hysterical, drug-seeking, and screwed for relief.

I'm very blessed to have the support I do. But it's also hard knowing that one simple pill, and I wouldn't need the charity. One simple prescription, and I could take care of myself. I could get out from behind this computer screen, off this couch, and out in the world. If I knew I had a regular monthly prescription, I'd be back working full time in the IT industry. I could tell a potential employer, "yes, you can rely on me..."

Someday, I hope....

Thursday, December 8, 2011

[Repost] Teen wins award for new targeted cancer treatment

This is just too cool not to share! For her design of a cancer-fighting technique that targets tumors and leaves healthy tissue intact, Angela Zhang, of Cupertino, has won a best-of-the-best national science competition and a $100,000 scholarship. She is all of 17 years old.

Zhang, a senior at Monta Vista High School in Cupertino, won the grand prize in the Siemens Competition in Math, Science and Technology, which funds and recognizes outstanding achievement. She designed a gold-iron oxide nanoparticle to deliver chemotherapy. It's like sending in a cellphone-carrying ninja to assassinate cancer stem cells and report back while in action.

"She showed great creativity and initiative in designing a nanoparticle system that can be triggered to release drugs at the site of the tumor while also allowing for non-invasive imaging. Her work is an important step in developing new approaches to the therapeutic targeting of tumors via nanotechnology," competition judge Tejal Desai, a professor at UC San Francisco, said in a statement.

...Zhang devised her experiment to target tumors, instead of blasting the body with chemicals, which also destroy healthy cells and cause side effects. Harnessing cutting-edge research into nanotechnology, she injected tumor cells into mice -- "I'm sorry, that must sound horrible" -- let them grow and then injected a nanoparticle carrying the cancer-fighting drug salinomycin.
Tracking the particle with an infrared laser, she found that the tumors diminished.

Complete story at 17-year-old Cupertino student wins Siemens Competition and $100,000

Wednesday, December 7, 2011

Better care comes through humility

This is one of the most frightening statements from a doctor I've ever heard: "If we weren't this arrogant, we couldn't do our job." That is just baffling to me. When have you ever heard, "humility goes before the fall..."? That's just not how it works. I understand that what doctors do is scary and taxing. It's difficult to know where to draw emotional boundaries. The landscape is fraught with danger and certain risks must be taken. That takes courage, true. But courage can be present with humility. There doesn't need to be the god-like attitude of "I know...." It's arrogance that doesn't let us see mistakes, even as we're making them. Arrogance doesn't listen. Arrogance instructs: "Who are you to tell me that I'm wrong?" But I've never known any degree, any amount of schooling to make a person immune from making mistakes. That just doesn't happen. Even a doctor can misplace their house keys.

Doctors are said to be some of the worst patients, and it's largely to do with that arrogance. As one doctor put it: "I didn’t tell the doctors all of my symptoms and the events surrounding them. Without even thinking about it, I only told them what I thought was relevant. In fact, a common mistake we doctors make is getting too attached to the first diagnosis we think of, and then failing to ask about other symptoms, other clues.” (Doctor's 'Worst Ever' Headache, and Learning the Patient Story) He was lucky in that they were able to reach the right diagnosis anyway, but how quickly could they have been thrown off track? "You know, most doctors are taught that if a patient says "the worst headache of my life," then it's a subarachnoid hemorrhage until proven otherwise. That means a bleed in the brain, usually caused by a ruptured aneurysm. But I knew something like that couldn't happen to me. And anyway, while I suppose technically this could be the worst headache of my life, it really wasn't that bad. I mean, technically everyone has had the worst headache of their life, right?" This doctor's "knowing" could have cost him his life.

Another doctor describes her experience in missing her son's farsightedness: "It’s really easy to get sure of yourself as a doctor, especially when you’ve been doing it for a while—and especially when you have lots of patients to see. It’s easy to say: I know this. I’ve seen this before; I know what to do. Been there, done that. Usually, it works out. But sometimes, it can make us miss things we should see. ...We tend to think of humility as an optional virtue. Humble people are admirable and all that, but we think of humility as something that can get in the way of excellence and achievement." (It’s only through humility that we can achieve great things) But that couldn't be farther from the truth. It's only when we believe that we don't know everything that we are willing to investigate. In her arrogance over the situation, she even started to think her son was acting badly on purpose instead of inquiring about a possible cause.

Arrogance places an immediate wall in doctor-patient communication. "Most patients still believe that physicians still provide what the ethics of medicine requires us to: “consideration, compassion and benevolence for our patients”. They come to the doctor with the expectation that they will get to tell their story and be heard. That they will enter into a discussion with their doctor about the risks and benefits of certain tests, therapies and alternatives. That their physician will help them, as a patient, make their own best decision for themselves and be comfortable making that decision. ...Unfortunately the healthcare experience for many is quite the opposite. The doctor gives a patient an order that is expected to be followed. Patients that don’t follow these orders are branded “non-compliant” and often excused from the practice." (Find a physician, not a general) Instead of cooperating with the patient and working to find better solutions that work for both parties, it becomes a lose-lose situation for everyone.

The power lies with doctors. "Conventional wisdom [says] that the key to fixing health care begins and ends with changing patient behavior. If only we could get patients to be more compliant, if only patients would do what I tell them, blah, blah, blah. ...If you were to believe the admonitions of the NIH, AHRQ, hospitals, pharma and every WebMD-look alike, you would think that patients these days would be more involved in their visit... asking questions, sharing information and making decisions. But as most physicians will attest... most patients don’t have much to say in the exam room anyway. And the longer they have to wait before being seen, the less patients are likely to bring up the few questions they wanted to ask. This is a huge problem." (The Fastest Way To Disempower, De-Activate, and Disengage Any Patient)

Allowing arrogance allows a culture of abuse to exist. "A nurse I know, attempting to clarify an order, was told, “When you have ‘M.D.’ after your name, then you can talk to me.” A doctor dismissed another’s complaint by simply saying, “I’m important.”" ( Far more than just inappropriate behavior in the workplace, this arrogance has real impact on patients' well-being. "Recent studies suggest that such behavior contributes to medical mistakes, preventable complications and even death. "It is the health care equivalent of road rage," said Peter Angood, chief patient safety officer at the Joint Commission, the nation's leading independent hospital accreditation agency. A survey of health care workers at 102 nonprofit hospitals from 2004 to 2007 found that 67 percent of respondents said they thought there was a link between disruptive behavior and medical mistakes, and 18 percent said they knew of a mistake that occurred because of an obnoxious doctor. ...Another survey by the Institute for Safe Medication Practices, a nonprofit organization, found that 40 percent of hospital staff members reported having been so intimidated by a doctor that they did not share their concerns about orders for medication that appeared to be incorrect. As a result, 7 percent said they contributed to a medication error." (Doctors behaving badly) All of that could have been prevented with just a slight attitude adjustment.

Additionally, not admitting to mistakes or trying to cover things up after the fact only makes it worse. "University of Illinois law professor Jennifer Robbennolt has done a series of studies that show apologies can help resolve legal disputes in cases ranging from medical malpractice and divorce and custody to disputed dismissals and personal injury. “Conventional wisdom has been to avoid apologies because they amount to an admission of guilt that can be damaging to defendants in court,” says Robbennolt, who surveyed more than 550 people about their reaction to apologies offered during settlement negotiations in a hypothetical injury case. “But the studies suggest apologies can actually play a positive role in settling legal cases. ...The apology fulfills some of the goals that triggered the suit, such as a need for respect to assign responsibility and to get a sense that what happened won’t happen again. So receiving an apology can reduce financial aspirations and make it possible for parties to enter into discussions about settlement.”" (Sometimes, an apology can deter a lawsuit)

Admitting mistakes, rather than running from them, is even good business. "After health care providers began admitting mistakes, apologizing and offering compensation, the monthly rate for new claims fell from just over seven per 100,000 patient encounters to 4.52 per 100,000, or 36 percent. The average monthly rate of malpractice lawsuits filed against the hospital fell by more than half, from 2.13 per 100,000 patient encounters to 0.75 per 100,000. The median time it took to resolve claims also dropped by several months, while the mean costs for liability, including compensating patients and paying attorneys, fell by about 60 percent. The average cost for lawsuits that were filed decreased, from nearly $406,000 to $228,000." When Doctors Admit Mistakes, Fewer Malpractice Suits Result, Study Says.

Conversely, when arrogance is tolerated, the consequences can be staggering. "In Anonymous Parents and Deceased Five-year-Old Girl v. Anonymous Obstetrician and Anonymous Hospital, the plaintiffs alleged their infant developed cerebral palsy after a difficult labor and delivery. Deposition testimony of the labor and delivery nurses indicated they were concerned about the lack of progress of the mother’s labor, but they were reluctant to voice those concerns to the obstetrician because of the doctor’s well-known tendency to respond negatively to such nursing input. This North Carolina case settled for $1.2 million." (Laska, L. (Editor) “Hypoxic brain damage to infant”, Medical Malpractice Verdicts, Settlements, and Experts, pg. 34 March 2003.)

Arrogance isn't just bad for patients, it's bad for doctors too. "[A] cultural expectation of medicine is that providers don’t talk about our lack of knowing everything in every situation. We don’t admit our humanness, our capability of making a mistake. We don’t want to seem weak in front of our peers. So we isolate ourselves, and this is never more evident than when we feel we have made a mistake. Instead of getting the necessary support from our colleagues, we keep quiet and go about our business as though nothing has happened. By doing so, we are shutting down emotionally and not allowing healing to take place." (The culture of medicine needs to change) How can anyone learn from, or heal from, making a mistake if they can never admit it? An opportunity for growth and improvement is turned into one of shame and secrecy.

We all know pride goes before the fall, yet somehow we all still fall prey to it. One reason for this may be simply because it's more comfortable. "It’s much harder to go into things realizing that every day, every moment, every child or patient is new. Going into everything with a clear eye, mind, and heart is so much more work—and means acknowledging that there is so much we don’t know. In fact, it means focusing on what we don’t know—and who wants to do that?" (It’s only through humility that we can achieve great things) Believing that we know what's going on, whether we truly do or not, feels more confident, more empowered, more capable. The trouble is, feelings aren't facts. We can feel totally right when we're absolutely dead wrong (sadly, no pun intended).

Monday, December 5, 2011

I met another unicorn!!!

I say we're unicorns because we're the case that doctors learn about in school, but are never supposed to see in their practice. I finally have talked to another person who has my disease!! She's a lovely woman from Kentucky with that slight southern drawl that puts you immediately at ease. We talked for a few hours comparing notes and symptoms, sharing horror stories and difficulties. And above all, we shared our fighting spirit. Neither of us wants to settle for a marginal quality of life. We want to know about our disease in order to conquer it. We don't need to be what we once were, but we know we can be better than this.

Our pattern of disease is very similar, as is our current list of complaints. We've both run into the same sort of stigma in the health community, and similar apathy from health professionals towards our disease. It was like I suddenly had a sister who I was able to turn to and validate, "yup, our parents are off their rocker on this one...". I learned that my experience was not unique, and therefore not my fault.

Now that I know this, I have a whole new crop of questions. Why aren't doctors more interested in our case? Why go into medicine if not to delve into these mysteries? I feel left out in the wilderness because of what seems to be a reluctance to leave the well-lit safety of "what we know." Our symptoms get managed at the absolute bare minimum, but we're never actually given a quality of life. Why is that? Our doctors, wonderful though they may be, shy away from acknowledging the chronic pain and resulting fatigue. (I suspect the War on Drugs has a lot to do with that.) I was absolutely shocked when I finally got a diagnosis of small fiber neuropathy, because that meant an acknowledgement of my pain. And I was able to pass along the name of that diagnosis to my new friend. We're going to keep in touch to see what sort of progress we can make: her in Kentucky, me in Colorado.

One good thing I learned was that going to a specialty clinic like The Cleveland Clinic wouldn't help me. She'd already been and they really had nothing new for her. They were more interested in her doctor, who was able to diagnose her, than they were in her. It was as I suspected: a lot of great marketing, but really the same health care opportunities (or lack thereof) beneath. I dodged a bullet, thanks to her exploration.

I think the most important thing I learned though was that she was just as frustrated as I. She too was driven to find her own answers. She has the same level of dissatisfaction that I do. We both believe there's a more aggressive way to treat us that would give us a better quality of life. We hate that we can't make plans on Monday for Friday, and know we're going to be okay once Friday arrives. We know that pain management exists. We just don't understand why we're being denied access to it. We have a disease that can be verified with blood tests. It's not like there's nothing else wrong with us. Why is it so difficult to believe we have chronic pain as well? Why is it so difficult to understand that some days are worse than others, and flares are unpredictable? Why is it so hard to believe that we really are trying to be more active in life, and aren't just looking for some fix?

There are two conclusions I come to: either they can't/don't care, or they can/do care but it doesn't matter---there are outside forces at work. This is what upsets me most about our health care system. It seems like there is so much that goes on behind the scenes that we don't get to know about but has an affect on our care anyway. The doctors are making their decisions based on what they see, but they rarely explain what it is they're concerned about. I know I would only need a baby dose, 2.5mg, of oxycontin twice a day to handle my regular level of pain. I know that for my flares, I could need as much as 20mg, at worst. That's less than I was on for my chronic migraines. At that time I was on 60mg, three times a day, with a free pass to the ER for as much dilaudid as I wanted. My pain isn't that bad now. I don't need that high a dose or a note for the ER, like before. But still there's this absolute reluctance.

There's also a reluctance by our doctors to prescribe additional medications, even though we are still suffering symptoms. I know I did better when I was taking additional T3 supplements for my thyroid. I had to move, so I lost that doctor. Since then, I keep getting this song and dance that, "because it's not proven..." they don't want to try it. Well, I've been on it before and I felt better. I performed better throughout my day. I was healthier. Isn't that proof enough? But getting a doctor to reach that conclusion is like pulling teeth. This reluctance makes much less sense to me, since we're not even talking about abusive substances. So what's going on there? I don't know that we'll ever get to know.

Even though it's not all good news, it's still a huge relief to know I'm not alone anymore. These problems that I've encountered are not unique. My symptoms are not unique (we both turn ash grey with a bad migraine!). I have validation. I have confirmation. I have a sister-in-arms in this battle against our disease. I feel recharged and ready to give my all again. I'm not just fighting for me. I'm fighting for her too, and she's fighting for me. Together, we can make better progress than we could have alone.

Christmas came early this year ^_^
(Published with permission)

Price tag of pain

"Everything has a price tag of pain," is a saying I like. The idea is that even if a situation is bad, we'll put up with it until we've reached out limit. That's our price tag of pain for that situation. It begs the question, "How much you gonna suffer before you decided to change things?" Often for me it's a mix of procrastination and down-right stubbornness. I can't tell you how many years I struggled with taking my medication on a schedule just because I did not want to have to take the stuff at all. I was a little kid throwing a temper-tantrum. Sure, acting properly felt better. But I didn't want to face it. Taking the pills was admitting my illness was real: that I'm broken. That was the hardest pill to swallow of all.

Thankfully, the consequences of my inaction were swift. Within a few hours of not taking my meds, I would feel terrible. The obvious thing to do was to take my pills. Within 30-45 minutes, I would feel better. It still took years to get disciplined enough to take them right when I woke up. It's so easily a part of my morning routine. Just one more step: swallow these, then brush your teeth. No biggie. But it is. I have medications now that can be seen as recreational drugs. I don't like taking them either. I'll wait for the pain to kick in before I medicate. That's actually not the right way to do things. It's bad for the nervous system to go on that roller-coaster ride. I resist anyway.

The answer, of course, is to pull up my Big Girl pants and deal. Since I'm acting like a child, I'll talk to myself as though I'm a child: "Now, Pamela... you know you don't feel good now, and that you're going to feel worse later if you don't take this. I'm sorry they can't all taste good like your vitamin. But you're strong, and you can make it look effortless... if you want to. Be strong now and stick to a schedule. I know you can do this. Let's take care of it together, and then we'll both feel better." (I'd like to thank my counselor, Carol Peters for teaching me how to do this kind of constructive dialogue with myself.) When I can approach the situation with firm kindness, I'm more successful at accomplishing it. I'm not perfect at it. This morning, I woke up very resistant. But I'm good enough. I took my medication before the price tag of pain kicked in too much.

Each time I do the right thing before that price tag comes into effect, I pat myself on the back. Sometimes literally. It doesn't matter that it's my own hand doing the pat. It feels good, so I use that as a reward to keep my spirits up. I'm on a pill schedule of every 4 hours, and that's no fun to keep track of. So I use a Facebook game as a timer. The crops come in every 4 hours, so I play my game and take my pills. A spoonful of sugar, so they say.... I put water bottles around the house on doctor's orders to stay more hydrated. Each time I pass a room with a water bottle, I have to stop and take 4 gulps of water. It may be silly, but it works. The goal is stable health, and I will do what it takes to get there.

I am willful. That sometimes works for me, and sometimes against me. I need to change my behavior in a nurturing so that it doesn't seem like a burden to do these things. I need to reward myself because, in truth, this is a burden I don't like. I need to acknowledge my efforts so that I'm more likely to put forth the effort in the future. Then I don't procrastinate as much and I'm able to feel more accomplished, building my self-esteem.

"Perfection is the enemy of good enough," so the Russian proverb goes. When I am feeling resistant, I can turn my attitude around in gentle, loving way. I'm already feeling bad, so getting angry at myself doesn't help the situation. I can take care of myself in a way that works for me. I don't have to pay the price tag of pain today if I don't want to.