Saturday, March 31, 2012

How to be happy being broken...

There is no way to insulate ourselves from mistakes. You can memorize everything, you can graduate magna cum laude, and get more degrees than a thermometer... You will still make mistakes. No one is immune. There is no vaccination. There is no pill to make you perfect. Stand up, and know that you are enough anyway. There is no formula for a perfect life. In fact, did you know that there are two types of happiness?! (You do, but you probably weren't even aware of it.) And most of how we go about happiness is all wrong. We go for happiness-in-the-moment, when we should be going for happiness-in-the-memory.

What's amazing (they've measured this), is that my happiness-in-the-moment can be greater, but it's my happiness-in-the-memory that is more important to my overall sense of well-being. That is, I can go through a terrible experience, but if I'm able to remember it in a positive way, it gives the whole experience a feeling of happiness. And it's this memory of happiness that is more important to how I rate my whole life as whether it's happy or not. Conversely, we can be happy for something in the moment, but if we don't remember it in a happy way, it can spoil the whole experience. We know this already. We have a phrases for it: "buyer's remorse." ... "the Honeymoon period" ... "it seemed like a good idea at the time." I can be absolutely thrilled in the moment, but if I remember it in a negative light, all that momentary joy is meaningless. And we can be enjoying and experience and having a grand old time, but if it's ruined at the last second, the whole experience gets ruined. We were happy for 99% of the event. But that 1%, because it was the last one percent, makes or breaks all of it.

Isn't it funny how our minds work? Here's the guy who did the science behind it:

There was a skiing trip that my family got to take one year where everything went wrong. Our plane was delayed by several hours so we didn't get on the ground until around midnight. We were all kids at the time, so we were exhausted. When we finally piled into the rental car, the first one wouldn't start. So we piled everything out, put it in the next rental car, only to discover once we'd left the lot (of course), that the gas gauge didn't work. Third rental car, and we're finally on our way, only to then go through so many other mistakes and injustices on the trip (the hot water heater in our unit self-destructed, the replacement unit they gave us the front door wouldn't close...) that it just got funny. It was so absurd, and so much went wrong that we ended up laughing about the whole thing by the end. It was something out of National Lampoon's Family Vacation. And even though it was the vacation from hell, we still laugh about it to this day. At the time we were miserable. We've been happy about it ever since.

I hold the power to be happy about all my memories, if I want. There are certainly some bad memories that should probably stay bad. Hot does still mean hot, and fire burns... But even if the experience was terrible, I don't have to remember the experience terribly. College was an awfully hard experience for me, constantly filled with stress, financial worry, poor health and near-constant performance anxiety. But I got through. And I can look back on that whole experience proudly, even if I was a wreck at the time. Same goes for my health experiences. They're awful to go through! But when I triumph on the other side, I can look back and be proud of myself for going through all that. I have very visible, bright, white scars on my face from battling MRSA (it nearly killed me). But I never hide those scars with make-up. You should know I went through battle. I'm proud I survived. The scars tell that tale.

I can even help write this story of happiness ahead of time. I can look at my life and imagine, "Now, when I look back on this time, what am I going to be grateful for?" Thinking of my life in those terms, I can set myself up for happiness in the future, and experience a taste of it now. For me, even though I'm desperately trying to get back to a "normal" life, I am going to look back on this time and be grateful for all the research I was able to do. I've had the opportunity to let my curiosity wander and chase after what it finds fascinating, and I have found some amazing things (including the video above). Since I now know the memory is more important than the experience, I can see my life for how I will remember it, and then the experience of it isn't so difficult. Right now, this moment can be broken all it wants, if I can remember it happily, that's what counts. I can be broken in many ways, but if I remember me happily, that's what matters.

How are you going to remember your today, tomorrow?

Thursday, March 29, 2012

Rx for Doctors...

I know I've spoken a bit here on medical arrogance, medical narcissism, and its negative consequences. I don't do it to call out doctors, so much as to say, "Hey, we already know this is going on... Why not just admit it?" But here is a video, a TED talk, that I think puts it best... a must watch for all in medical care, patietns, and their caregivers. Brian Goldman: Doctors make mistakes. Can we talk about that?

Tuesday, March 27, 2012

Responsibility and self esteem

Pushing the Limits, bronze sculpture by Gregory Reade
As I've slowly begun to strengthen, as a result of physical therapy, I've noticed my mood increase considerably. But it's not from the physical therapy, itself, per se. It's because I'm able to do the little things again. You might be amazed by these little things that make me so head-spinningly proud; they're very mundane. But they're things I can do that allow me to be more responsible towards myself. THAT is what's helping my mood. I'm able to do simple things that are a little more responsible, and each time I'm able to add a "good deed", my self-esteem grows.

I have enough energy to fix a meal and put the dishes away afterwards! I can also do a little spot cleaning, so that you'd never know something was cooked there. I can make meals from (relative) scratch. But for years I had to rely on microwave food because it hurt to stand that long. The bottom of my feet would catch on fire withing minutes. I even kept a chair by the microwave so I could rest. Now I can stand long enough to brown meat, make my sauce, finish the pasta and combine it all together. I don't have to rely on frozen food. That's HUGE, and probably a lot better for me nutritionally.

My car is clean. Before now, it was too much to ask me to bring the mail in with me when I left the car. It was too much to ask after being out and about. Whenever I was getting home, I was always near exhaustion or in pain. Maintaining a clean car doesn't fall high on the priority list. Open mail and magazines piled in the passenger and back seats. About a month ago, when it first started getting nice, I was able to clean out snow-drifts of paper. These days when I get home, I don't have all that pain. It's no problem to grab a few extra things on my way inside and maintain the cleanliness of my car. My hands aren't on fire or aching from the micro-vibrations in holding a steering wheel. Beauty!

Best of all, I'm pacing myself well enough that I haven't reaped enormous costs on the other side! Talk about being responsible! You mean I may actually have a handle on this bag o' bones? You mean maybe I've learned how to read these wacko, random symptoms well enough? Have I really learned how to recognize when I need to rest and when I can push it, so that I can make improvements to body? Wow. Wouldn't that be awesome? Sure, I could push my limits before, but there was always hell to pay on the other side. When we're in the grips of chronic illness, anything we do is robbing Peter to pay Paul, and Paul takes his interest in pain. But now, it seems that grip is loosening on me. Now I push a little, ease off when I notice the fatigue creeping in, I'm able to keep myself uninjured. It's sad that my body is such a dangerous place, but when was the world safe? Perhaps I'm learning to manage anyway, and these exercises will give we more wiggle room moving forward!

I do hope this trend continues. I hope it's not a fluke of the incredibly dry weather we've been having. I hope I'm actually getting better at these things. Because each time I'm able to do one of these little responsible things, a little voice chimes in my head, "Oh, look at what a good girl you're being! You're making a meal like a really-real adult!" or "Wow, look at that, girlfriend! You've kept your car clean for a month now! Fierce!" or as I got to tweet earlier: "#PhysicalTherapy went well today! I got to #levelup & I'm now doing more difficult exercises. Woot! #IamMighty Need a nap low. Lol" You know I'll be prancing like a peacock when I can actually hang my clothes up, rather than just moving them from the clean basket to the dirty basket!

And you may have noticed it, but I didn't talk about this improvement for a month. I didn't want to jinx it. There are so many failures---of drugs, of therapies, of professionals, of ourselves---that we encounter as the chronically ill, that it can be really difficult to believe in something. However, I must admit that my life has improved, maybe not dramatically, but certainly fundamentally. I've been able to do so many of the little things I usually just ignore, guiltily. Now that I can do them again, it's like a weight has lifted. I'm being responsible, things look better, order has been restored where there was once chaos.

Let there be more of this, please!

Sunday, March 25, 2012

Good "Communication key to treating chronic pain"

I saw this article today, "Communication key to treating chronic pain" and I about flipped my lid. Almost everything about it is wrong. But if you were to go online and Google articles on the same subject, you'd find lots of people agreeing with her. They're all wrong. Their communication styles are designed around trying to talk like a doctor so that you can then better communicate with your doctor. But we shouldn't try to do that, and it's fine if we don't. Doctor's didn't get their degrees by being foolish. They can understand us, even if we're talking dumb. What this article will set you up to look like, is not an empowered patient, but a drug-seeker.

"1. Pinpoint the pain" - Dear lord, do not try to memorize any medical charts or symptom lists! This is what people who are not sick do, when they're trying to score some drugs. You never, ever want to act like that. Instead, tell your symptoms like a story. Start at the beginning of your day, and walk your doctor through what you do, when the symptoms come on, and how you respond. Your doctor will know what clues to look for, in order to come to a diagnosis. Your doctor will also be familiar with the small, little details that a true patient knows, and no drug-seeker could. No memorization required! In fact, when it sounds like you've memorized something, it's even more suspicious. Just be you. Tell your story.*

"2. Rate the pain" - This is what every triage nurse asks and it's an absolutely worthless question. My 6 may be the worst pain you've ever experience in your life, or vice versa. There's no baseline or standard for comparison. You may as well answer the question: "Threat level orange." Rather, what you should do is try to compare your pain now to some other painful event in your past. "This is as bad as when... [insert personal story here]." That give the health official a more realistic picture of what your level of pain is, and you'll never run into the problem where you say "8", absolutely mean "8", but the nurse writes down "6" because: "everyone exaggerates their pain." Giving them full control over the number, but letting them know what it compares to, lets them know you're leaving the rating up to the professional, while still being fully informative.

"3. Give a timeline" - (This is the only bit of information I find useful, but I'd one-up it by saying, keep a journal of your symptoms if possible, including meals for possible dietary triggers.) "Let your doctor know when the pain started; whether it’s constant or off and on; what makes it flare up; and whether certain activities make it better or worse."

"4. Share personal toll" - In this the author means how it's effecting you emotionally. Great googley moogley! Unless you have a solid relationship with your doctor, do not approach them about psychological problems, especially if you're a woman! That's a quick route to being called hysterical, getting minimized both medically and personally, and stigmatized forever. The better approach is if you are feeling these things, contact a mental health professional yourself. If you have to get a referral from your doctor but don't want to tell them why, you can say that you "want to make sure you have good coping mechanism for this difficult time..." (or something to that effect). There is still very much the belief that if the pain can't be explained, the patient may be "manifesting it as a way to get attention because of their inability to cope in other areas of their life." Sad, but true. Instead, tell them how it's taking a toll on your activities and what kind of simple tasks in your life it interrupts.

"5. Chart the treatments" - If you want look like a "problem patient," then by all means bring in a huge stack of papers for him or her to read. That's also a great way of appearing like you're trying to tell the doctor how to do their job. I'm not saying it's a bad idea to keep a health diary. As I mentioned before, that's a great tool for providers. But leave the "charting" to the professionals. Don't just pile a bunch of assignments on them like they're back in school. Pull out the material only if asked.

The article mentioned: "Be your own advocate." Also, unfortunately, a bad idea. In my article, The Pros and Cons of Patient Interactions, I detail how the good intentions of patients can be seen in the worst light by medical providers.

It also goes on to mention: “If your health-care provider doesn’t understand what you’re saying or dismisses your problem, look for someone else,” Jamison said. I wholeheartedly agree. The only option we have as patients is to vote with our feet. If you ever get confronted with doctor shopping just tell this joke:

You know what the student graduating at the bottom of his class from medical school is called, right?



"6. Be specific" - "Tell your doctor or health-care provider what the pain feels like." This is similar to my point in number 1 & 2. Do not try to sound like a health professional. Instead, compare your pain to some other experience in your life. Otherwise, it has the potential to make you sound like you're running a scam or hustling.

*Tell Your Story
This can be difficult, because the "the medical exam – the most frequent point of contact between patients and the health care – was never designed to engage patients." (emphasis theirs) This is from former hospital executive Steve Wilkins, in his article Patient Engagement – Here’s The Key To Success In Case You Are Interested.(He also makes a great infographic:)

Used with permission

Your doctor may rush and interrupt you. They're very busy people. Stick to your guns. Tell your story and make sure you get it out. If they try to jump ahead, you can politely "scold" them by saying, "Hold on... I'm getting to that." The point is to make your doctor listen. We want to do that politely, and in a way that invites them to recognize what we're going through and diagnose properly. The Cliff Notes are just not enough. They need the whole story. They're probably going to be resistant. This is not the current style of doctoring. But we can teach them a better way that can give more authentic results (weeding out the fakers in the process).

It works. I retrained myself to talk this way and I have much better relationships with my doctors now, especially the new ones I have to see, where there is no prior relationship. And if they're a good doctor, they'll listen. They may get a little flustered at first, but then they relax and listen. It's not just communication. It's good communication that counts.

Good luck!

Saturday, March 24, 2012

Responsible denial (aka: travel freak-out)

I always freak out about travel, whether it's twenty minutes away by car, or two hours away by plane. With the car situation, I'm always worried that I'm going to leave something at home that I'll need because of a symptom flare. Then, because I don't have it, I have to call the evening short, turn around and go home. If I can go home, depending on how bad the flare is... there's been more than once I've had to crash at a friend's house. I carry a dose of my morning meds with me at all times, for that reason. Plane travel. Wow. Not only do I not have the option of turning around, but the flight itself will likely cause a flare. And the humidity in Seattle will cause a flare, guaranteed (that's why I left!). Pain. Real, physical pain. And potentially an ER trip (if the last 4 times I've flown are to be trusted). This is my travel freak-out.

When I get in this state of panic, I will shut down completely, if I'm not careful. Not that I can't take care of myself, no... More that I'll lose hours just staring, my thoughts racing (or no thoughts at all), because the whole thing is just too scary. I'm going to talk to my doctor and see if I can't get some extra medication for that time. I can go back on the Relpax for the migraines. I have no idea how we're to address the neuropathy. Probably more Ultram so that I'm not bouncing around on higher, then lower, doses of narcotics. But I don't know it's going to be enough. I have to guess and hope I'm accurate. The worst the pain was in Seattle, it hurt to much to hold a pencil in my hands, let alone type. I nearly lost my mind, worrying I'd have pain like that forever. And now I'm volunteering to go back into that environment? I sure hope this works, that's all.

I'm trying to allow myself to feel the fear and do the right thing anyway, but feeling the fear at this point is not helping!! There's just one phrase, one sentence, that is in my way:


That's enough to stop me cold. At that level of pain? Absolutely. That's terrifying.

This is why I am not anti-denial. Sometime, denial is a heck of a useful tool. If I can just block out the part past me getting on the plane here in Denver, then I can still get done what I need to get done, without worrying about what comes after. All I have to do is make sure I am prepared to get on that plan, and be away for a week. I can imagine I'm going up to the cabin, where I routinely feel better, from the higher elevation. I'd need to take the same preparatory steps. I'd just feel better about it, and in that way, I'll actually be able to accomplish it.

I'm aware that I'm fooling myself. That's the intent! I have to do this. The likely reality is scaring me stiff! I have to give myself some carrot. And I can't hang my hopes on this trip working out as my motivation. I need to be able to handle the disappointment if it doesn't work out, and compounding it with, "I did all that suffering! For nothing!" is never a happy time. Also, I don't know what kind of time I'll need to recover once I get home again, so rewarding myself with something at home could need to be put off. That will only make me doubly disappointed. Nope. It's just easier to trick myself into a good mood. I'll probably have a full panic attack once I get on the plane, but my counselor and I have prepared for that.

This is what I call, Responsible Denial-- when my denial enables me to be more productive, more responsible (obviously), and more compassionate to those around me. I go into denial that I'm in pain all the time. Sometimes, it actually works! Then I'm able to use less medication, get more done, and just live more of a normal life. Now, I have to be very careful. I don't want to ignore symptoms that are new, or unusually severe. (The latter is pretty easy, though... massive distress is usually urgent.) New symptoms need to be referred to a doctor. They're the ones who can tell me what it's about, how to manage it, and whether or not I need to worry. Responsible denial is a great tool, but I must never use it selfishly. It's about enhancing my ability to be responsible, not about avoiding consequences.

So... it's off to "the cabin," and now I actually feel like I want to make sure I have a good time. Doing the steps to make sure that happens is going to be easier now. I've even got a smile on my face.

And who knows? Maybe it could all work out... Perhaps my adaptation to high altitude will help me cope at sea level for a short while, because I'm getting so much more oxygen. It could happen! And I won't know until I get there... In the meantime, there's work to be done!

Friday, March 23, 2012

1 in 100

Doctors, we need to have a serious talk. This is a story from back before I was a patient, when I worked security at Barnes Hospital (BJC). They had just put in one of those new card-swipe key-systems, so all the doctors had to get new IDs. I was part of the security team that would ask the doctors to come in, pose for their picture, verify some basic information, and then give them their new ID badge. We would run folks through in batches of one hundred, because that's how many cards the machine could process at once. And I know this is purely anecdotal, but only one in one hundred doctors was actually nice to me.

Now, I hear the legions of the AMA screaming in protest, "But we have to be that arrogant to do our highly dangerous jobs. You have to have that arrogance, that confidence, to deal with things like cutting on the human body! It's only appropriate that doctors be arrogant!" But let me offer an example of men and women who have much more difficult jobs, and do it with a humility that is amazing.

You know that the deadliest job, even more deadly than military service, is that of the fishermen in the Bearing Straight. They have the show Deadliest Catch. But even more amazing than their job, is the job of the U.S. Coast Guard. These are the men and women who fly into the storm to rescue the fishermen in distress. These are the saviors of the people who do one of the most dangerous jobs in the world. Think you've got it bad at your job? Try doing it in gale force winds and sub-freezing temperatures.

Commercial fishing has long been considered one of the most dangerous jobs in America. In 2006, the Bureau of Labor Statistics ranked commercial fishing as the job occupation with the highest fatality rate with 141.7 per 100,000, almost 75% higher than the fatality rate of pilots, flight engineers, and loggers, the next most hazardous occupations.[8] However, Alaskan king crab fishing is considered even more dangerous than the average commercial fishing job, due to the conditions of the Bering Sea during the seasons they fish for crab. According to the pilot episode, the death rate during the main crab seasons averages out to nearly one fisherman per week, while the injury rate for crews on most crab boats in the fleet is nearly 100% due to the severe weather conditions (frigid gales, rogue waves, ice formations on and around the boat) and the danger of working with such heavy machinery on a constantly rolling boat deck. Alaskan king crab fishing reported over 300 fatalities per 100,000 as of 2005,[9] with over 80% of those deaths caused by drowning or hypothermia.[10] (Wikipedia - Deadliest Catch - Dangers of commercial fishing)

There is one group of medical professionals I will tip my hat to, and that is combat medical services. I had a favorite RN at the University of Washington ER. He was a Navy Combat Medic, and he could remain calm no matter how many top level traumas he was dealing with. I asked him once what his secret was. He replied, slightly stunned by my show of ignorance: "Nobody is shooting at me." That put things into perspective.

Only one in one hundred was nice to me. Ninety-nine though that their degree (and this was especially bad among new graduates) entitled them in some way to think themselves better than basic human kindness. There is something very wrong with that being the attitude of someone who is supposed to minister to the sick and weak. You're asking someone whom you've trained to be arrogant to then turn around and be sympathetic. The two are enemies! And we wonder why patients are complaining... It is really any surprise?

Wednesday, March 21, 2012

Medical Marijuana

Before we begin, I would like you to picture this. A plant is grown in a greenhouse. Its flower is harvested when it reaches maturity. It is then processed in a lab. It is given to the patient who is then able to lead a more normal life as a result. I'm not talking about medical marijuana, or MMJ. I'm talking about Digitalis, or as it's more commonly known---the foxglove---a flower that we grow and use and give to heart patients as a medication. We have also found use of this flower in science: "It is used as a molecular probe to detect DNA or RNA." (Wikipedia) We have been using plants and animals for our own needs since forever. Willow and birch bark are two of the original sources of aspirin. Novocaine, and all the other medications that end with -caine are a plant derivative. Alcohol happens naturally to fruit and grains in the right conditions. Even birds and monkeys get drunk. And yes, sometimes people use these things for recreation. So please, let's look at medical marijuana as exactly that: MEDICAL.

First, let's explore the science behind it. There is, in the body, a system, which they now call the endocannabinoid system, which works using biochemicals that are the same produced by the marijuana plant. Our bodies produce marijuana-type chemicals as part of their normal function. Marijuana is just an external source for these regularly used, natural human biochemicals.
The endocannabinoid system is a relatively recently discovered neuromodulatory lipid signaling system that is comprised of the cannabinoid receptors, CB1 and CB2, the endogenous arachidonic acid-based endocannabinoids, such as anandamide and 2-AG (2-arachachidonoylglycerol), as well as their biosynthetic and degrading enzymes. These components can be found in various locations throughout the body, such as in the central nervous system (CNS), the gastrointestinal tract, the liver, the pancreas, adipose tissues, immune cells, and skeletal muscles. Although performing a variety of different localized tasks, the system’s general role seems to revolve around maintaining homeostasis through regulating energy storage, nutrient transport, and feeding behavior. Furthermore, as their name implies, endocannabinoids are described as having cannabimimetic effects, in that they roughly mimic the pharmacological effects of cannabis. (P. Siebler, Masters student in Physiology at CU Boulder, "Sleep Physiology", 2011)
Let's put that in English... It's a recently discovered part of the nervous system that is comprised of the cannabinoid (meaning they respond to cannabis-based molecules) receptors, named CB1 and CB2, the the molecules (like vitamins A, E, D, and K) that the body makes itself, such as the molecule anandamide (pronounced AN-an-DE-mide) and 2-AG, as well as the enzymes that the body makes and uses to break these larger molecules apart. These compounds can be found all throughout the human body, such as the central nervous system (the nerves that control how we sense and feel), the gut, the liver, the pancreas, a "loose connective tissue" (the stuff that holds everything together) called adipose, immune cells, and skeletal muscles (how we move). Although the system performs a variety of different tasks at the small, local level, the system's general roll seems to revolve around helping the body maintain a normal state through regulating energy storage, the movement of nutrients through the body, and hunger. Also, as the name implies, endocannadinoids, these naturally occurring hormones that the body makes itself, cause roughly the same effects as experienced when a person takes medical marijuana.

While not a panacea, or all-cure, it's easy to see why medical marijuana is so helpful to so many people. It's one of those very basic biological molecules that the body needs, like a vitamin. This is why scientists now believe that there can be a endocannabanoid deficiency, called CERD, that can be treated with the use of medical marijuana. MMJ works on the central nervous system, so right there it will potentially help with any pain problem or central nervous system dysfunction, like epilepsy. In fact, medical marijuana has been found useful for children with epilepsy: THC effected reduced spasticity, improved dystonia, increased initiative (with low dose), increased interest in the surroundings, and anticonvulsive action. Or, in English, medical marijuana (in concentrated THC oil form) reduced muscle spasms, improved a medical condition known as dystonia (a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures), increased spontaneous personal activity (with low dose), increased interest in the surroundings, and stopped convulsions (a medical condition where body muscles contract and relax rapidly and repeatedly, resulting in an uncontrolled shaking of the body).

In fact, in Israel, they are still recruiting for their clinical trial for the use of MMJ on PTSD. Their clinical trial is in Phase IV: If the drug successfully passes through Phases I, II, and III, it will usually be approved by the national regulatory authority for use in the general population. (Wikipedia) Israel has given governmental support to the use of THC for the treatment of PTSD, and other conditions.
Israel is one of the first countries to have permitted the use of medical marijuana. Tel Aviv’s cannabis clinics have been open for some time on an experimental basis, with government support.

They offer treatment for cancer, multiple sclerosis, HIV, colitis and other ailments. Recently too, Israel’s first-ever hospital to offer cannabis as a treatment, Sheba Medical Center in Tel Hashomer, started its pilot program. There patients obtain the necessary government permit, according to a strict protocol that the hospital developed, and then are provided with cannabis.
(Medical cannabis in Israel: Revolution or evolution?)
But let's hear from an actual patient:
I lived in Colorado where it was legal and had a doctor that believed in its aid for fibromyalgia and migraines. I went through all of the legal channels of the state and used it for a while until we moved to Texas. I can say that it did really help me with the pain of migraines and the tension that comes along with them. MMJ is available in many strains which are directed for different illnesses, such as one that makes you hungry. My son uses this strain often for his Crohn's disease. He is able to keep some weight on this way. Another can give you energy to aid in helping us get off of that couch and clean the house.

As for the methods of using, there are many. I found that the Marinol (dronabinol) pills that are available by prescription did not work for me at all. The dispensaries can make up a capsule using the keef and it works good for someone who needs to relax and sleep. It takes awhile to work since you have to digest it. I used brownies at times, which is a very pleasant way to ingest the drug. I hate the smell and the taste it brings when you smoke it, but it is really the most efficient way for me to use it. I found that a water pipe (bong) was the least insulting for me. When my migraines are at their worst and I can't open my eyes or get out of bed, I could take 2 puffs and I could be up and around within the hour, or sleeping for a few hours if that was my choice.

I believe MMJ is a great choice for some people and should be made available to chronically ill patients, no matter state they live in. I am not oblivious to the problems that can come with marijuana, but I believe this is better for our bodies than some of the prescription medications that we are given. You cannot overdose on this plant. It has proven to be a Godsend for my son and brother-in-law who suffer with Crohn's disease. I wish it was legal in Texas; if so I would use it again. I struggled with using it at first because I am a Christian, but when illness takes over your life, some of our ideals can be questioned and maybe changed. Our eyes are opened to new ways of thinking and our ability for compassion and empathy grows.

Thanks for listening.

Finally, does it have side-effects? Sure. All drugs do. But are these side-effects actually dangerous? One study on driving statistics shows that stoned drivers are safer drivers:
Now, pro-legalization backers have yet another point in their favor: According to a new study from the University of Colorado-Denver, the 16 states that have legalized medical marijuana have seen an average 9 percent drop in traffic deaths since their medical marijuana laws took effect. The study analyzed data from 1990 through 2009.

“We went into our research expecting the opposite effect,” says study co-author Daniel Rees, a professor of economics at the University of Colorado-Denver. “We thought medical marijuana legalization would increase traffic fatalities. We were stunned by the results.”

When it comes to traffic safety, can marijuana really save lives?

By contrast, motorists who’ve puffed pot
“drive slower, are less likely to take risks, and are more likely to recognize when they’re impaired and decide not to drive,” he says.

Additionally, both Spiritual Leaders and Law Enforcement are beginning to speak up in favor of legalization of marijuana.

If you have the courage to share, what are your thoughts?

Tuesday, March 20, 2012

How to fake having a real life

So there you are... a good health day has actually happened on the same day of a nice social event you want to go to. You dress up all spiffy, get your game face on, and head out to the party. You get there, everyone is talking and making chit-chat. Suddenly, someone turns to you and asks you, "So... what is it you do?" PANIC TIME! Do you let this stranger in on your world of health problems? They might look at you like you're contagious and walk away, or possibly worse, start giving your unwanted advice! Healthy people want to talk about your job (which you may not have), hobbies (which you may have had to abandon), and interests (which may be totally health-centered because you're hunting desperately for answers and solutions). What do you do?!? Well, one way to get through is to fake it. In this article, I will discuss three ways to talk about our health that make it seem like we have a real life.

1) Act like you're a volunteer.
In this instance, think of yourself as a volunteer forwarding the Grand March of Scientific Progress: "Well, I'm involved in health research looking at the long term effects of [name one of your medications] on patients with [name a related diagnosis for the medication]." Now doesn't that sound a lot sexier than, "I deal with nausea all day for which I take phenergan." They'll be fascinated, even if they have no clue about the diagnosis or medication you've rattled off. They'll want to know more: "Oh? What does that involve?" Don't lose your cool. "I meet regularly with doctors as part of a long-term follow-up studies." or "I take part in post-clinical trials. We discuss medication side-effects and other patient issues." Both answers say that you're a study participant. Technically, this is absolutely true. If you have problems with a medication, doctors will report their findings. It doesn't matter that you're a patient as part of that process. Let them guess that you're doing this out of the goodness of your heart. But they'll probably be a bit curious: "Do you actually take the medication?" Just smile with confidence and say, "Oh yes, but it's all under the close supervision of a doctor. And if it's for the advance of science, I don't mind the risk." Now you sound noble and brave.

2) Act like you're a professional.
For this one, you're not trying to impersonate an actual health professional. Rather, consider your experience as a health patient in a professional light. Talking to other patients online? That's networking. Blogging about your experiences? That's freelance online journalism. Let's take a look at that dreadful question again: "So what do you do?" That question can be followed-up with something like: "I work with outreach programs for patients suffering from [name your diagnosis] in online communities." Which translates from: I greet folks online when they join the health board I'm on and make them feel welcomed. If the party-goer wants more information, you can say something like, "Part of it includes patient education and patient empowerment... Helping people find online resources so they can then help themselves... That sort of thing." Which means: I share with people about our symptoms and point them to cool websites I've found. If they press you for details, you can say something like, "One common issue among [diagnosis] patients is [symptom]. We deal with this by taking a hands-on, team approach leading patients through self-care processes they can do at home. Sometimes we're able to recommend possible treatment courses they haven't tried that they can bring up with their doctor." Which means: I talk to other patients directly (online) and we talk about self-care we can do at home. We exchange ideas about stuff we have heard of and/or tried. Now all that talking on Facebook and in online communities sounds glamorous and self-sacraficing.

3) Act like you're an activist.
If you do anything involved with signing petitions to get the government's help with health care, you can say: I'm involved in political activism for health reform. When they ask questions, you can tell them about the challenges facing patients with your disease, and about the petition you signed. It always helps to do your homework on what you signed so you can easily talk about the details. Know what the goals of the petition are, who the sponsors are, and how many signatures are currently on it. "I checked quickly just before I came here, just to see how we're doing, and we're up to..." sounds very pro-active and high-minded. Look up other political activity around your disease, even if it's in other states. It sounds very cosmopolitan to be able to say, "Did you know in Florida they're addressing this by..." Or even more worldly still, "In Germany, they're looking into...". It's also great to be able to mention a celebrity who has your condition and the kind of things they're involved in for your disease. You can also look up news stories related to you disease, so you can say things like, "There was an article in the New York Times just the other day on..." Google is a wonderful tool. Now you sound informed and well-read.

So there you are! Three ways to fake having a real life, even if most of your time is taken up dealing with symptoms, doctor's visits, treatments and other god-awful necessities of a chronic illness. I bet you didn't realize your life was just that cool! Seen from the proper perspective and framed in the proper way, you too can make this look awesome!! Healthy people will never know the difference. (Unless they get wise to this article. So, shhhh! ;)

Enjoy the party!

Clinical endocannabinoid deficiency (CECD)

PubMed folks... it doesn't get much more reputable than that! National Institutes of Health... CONCLUSION: Migraine, fibromyalgia, IBS and related conditions display common clinical, biochemical and pathophysiological patterns that suggest an underlying clinical endocannabinoid deficiency that may be suitably treated with cannabinoid medicines. (That's medical marijuana for you folks at home.)

Monday, March 19, 2012

Visualizing a Future You

One of the biggest problems I've had in dealing with my chronic illness and its limitations, is seeing myself as someone I can admire. There were certain preconceived notions I had of where I would be at 38, and my vision was no where near where I actually ended up. Some things I dreamed of---having children from my own body---are impossible for me. It's really easy to look at my life and see how much I've lost. But that kind of thinking gets me nowhere: it's focusing on the negative rather than the positive. If you don't like where you are now, picture a future you that you can live with, and aim for that. Then current circumstances are only temporary hurdles on the road to a greater destination. The easiest way to do that is to visualize who I am to be in the future.

When I do this visualization process, I first think of how I want to feel. This woman that I am to become... how does she feel inside? More confidant? Calmer? Happier? More content? More patient? A little more cynical? More outgoing, more reserved, or a little of both? I make sure that the qualities of this future me are qualities I can live with. If she's not happy, I throw that visualization away and find a new one. There's no use imagining a future me that's miserable. This is supposed to be an exercise about where I want to go with my life. Aiming for unhappiness is not that! And our visualization process is exactly that: Aiming ourselves towards a better, future us.

After I get the feelings down, then it's usually easy to picture what she looks like: longer hair (because I'm growing mine out), a few more lines and grey hairs (but I don't mind), quick to laugh, but mostly quieter than I am now; more watchful. I picture her in more business attire. Somehow she's figured out how to get some income going again and I've got new suits to show for it. I don't know how she's done it, but don't have to know all the details! That's part of the fun... Figuring out how to make this stuff true!

Once I can picture her, I can start listing off the reasons why she is the woman who she is. I know what she does for a living gives her a great sense of purpose. I can see that life has been difficult during the last 10 years, and I don't know what she's been through, but that the trials have made her stronger. I see her working in her new chosen field, and being recognized for her efforts. I see her smiling at the praise, but with humility because she knows the journey was that of a thousand steps. She's been able to make new connections in life and new friends with this line of work. I see her in a convention hall as part of the event organization staff, the applause leaking in from the dining hall, for whomever is speaker at the dinner that evening. When I picture it, the event is important enough to be a cloth-napkin affair, and that thought makes me smile.

I imagine her in her off-time, too. She's enjoying hobbies that I like, but didn't bother with before, because I was too busy doing more physical things that are now out of my reach. She's physically active (so that I aim away from being a couch potato), but in a more disciplined, mature way. Her exercise is Tai Chi in the quiet hours around sunrise, not dancing at the clubs to ear-splitting music until 2am. She's quieter than I ever dreamed of being, because it's never something I wanted, more it was thrust upon me by my disease. But I can picture it a sophisticated quiet, rather than quiet from boredom or humdrum. There is plenty of excitement to be had on the intellectual level that doesn't require zooming about physically as well. There are plenty of adventures of the mind that don't require extreme sports for their thrills.

When I do this visualization process, and I'm able to come up with a future me that excites me, then I really have something to live for: myself! Whenever I start to feel discouraged, I can sit and think about her, my future self, and think about what I need to do to get me there. I make sure to never visualize myself as healthier. That's dangerous---it's a set-up for disappointment should something bad happen. Instead, I make sure I visualize her as broken as I am now, if not moreso. But, to keep myself from despairing over that fact, I envision her as fully capable of handling whatever it is she has going on. That starts me thinking along the lines of problem-solving rather than just problem-despairing. I look at her life (which is not an impossible goal) and wonder, "Okay, now how did she get there?" When that happens, I start thinking about options and opportunities, rather then obstacles.

What's amazing to me is when I have a future I can look forward to living, I start automatically doing a lot of self-care activities. One big things I notice is that I'm a lot better about taking care of things that have no real pay-off now, but will have huge pay-off in the long run. My teeth are especially easier to take care of: I want my future me to have good teeth she can enjoy (I don't picture dentures for my future me), so I feel a real incentive to be responsible now. I also get a lot better with my money: I'm able to say to myself, "No, we can't make that impulse buy, even though we want to. We've got plans, and those come first." It's easier to make small sacrifices now, even though my self-pity/inner child wants the quick emotional fix of a right-now purchase (even for something as small as a box of Tic Tacs). When I know I'm working towards a goal, it becomes easier for me to defer gratification. Yes, I want the Tic Tacs now. But that satisfaction will fade quicker than the orange, sugary, candy after-taste. If we want real, lasting satisfaction, let's go for this bigger, long-term goal, instead... Self-talk like this helps me enhance my patience with my desires-of-the-moment, and choose actions that are more beneficial overall.

Try it for yourself, and see what happens! 1) Picture a future you that you like and admire, who successfully lives with your disease. What do they look like? How are they different from you now? 2) Imagine what it feels like to be that person. What does it feel like when they laugh? What do they feel like when they've see a long, lost friend? How do they feel physically when they run across something that melts their heart? 3) Visualize them moving through their life. What do you see them doing? What do they do in their off-time? Given your current limitations, what have they figured out to do to get past them or make peace with them? 4) Ask yourself, is this someone I want to become? If not, revisualize your future self until you can answer: Yes. 5) Figure out how to get from here to there.

Good luck, and happy daydreaming!!

Sunday, March 18, 2012

Full Committee Hearing - Pain in America: Exploring Challenges to Relief

A wonderful thing has happened on Capital Hill. Congress is finally seriously looking into pain and pain research. This video is amazing. Some parts were difficult to watch for me because of my beliefs on pain, but I was amazed by Christin Veasley and her ability to defend pain patients. I am going to speak on the Emotional-Physical connection of pain, which I don't think was very well addressed in the video.

Can emotions cause pain?
Absolutely. That doesn't mean, however, that the pain isn't real. There are studies that show that heartbreak actually causes physical damage to the heart. So the idea of "all in your head" or "you're manifesting this pain" is just silly. Yes, emotions play into and can increase or decrease pain. Yes, you can play with your emotions and influence your level of pain. But I love how in the anecdotal stories, both people admit that their pain isn't 100% gone, but it's better enough that they can function. That's all any pain sufferer really wants---function. And when you find that solution, you'll treat it like a miracle, even if it isn't 100%. I'm the same way about my Occipital Nerve Stimulator. That doesn't, however, mean it works for everyone. Migraine patients, particularly, have the inability to ignore pain like other people. So while biofeedback works wonderfully on some, it just can't work on others. We need multiple ways of treating pain, and everything that comes along with it.

Does this mean doctors can ignore pain and send a patient to see a shrink instead?
Absolutely not. There needs to be a holistic (meaning whole system) approach to pain. One thing we know is that serotonin and dopamine---the neurotransmitters that we tinker with to help people with depression, anxiety and a host of other mood disorders---are the same chemicals used by the body for inflammation control and wound healing. Our bodies use up these chemicals when we are injured, sick, or in chronic pain. That means less of those neurotransmitters for the brain. So it's not surprise then that people who are chronically ill also often come up as patients with mental health needs. Not only is the injury/disease/pain itself difficult to deal with, but we're running at a neurotransmitter deficiency from the word go! Both the pain and the chemicals that support the body-while-in-pain need to be addressed.

But aren't their people out there who exaggerate and are really making things worse for themselves?
If there are, you should feel sorry for them. There are people out there with personality disorders where they will say whatever, including faking illness and pain, for all sorts of reasons. But the truth is, these people are so few and far between that for every one of them there are 40 people who are telling the truth. So really, if you want to err on the side of caution, err on the side that they're telling the truth. Even among children, (according to the book "Nurture Shock") tattlers only tell about one in six of the actual times adult rules were broken, and even then they wait until the most egregious act before they tell on others. Most people won't complain about pain until it starts to interfere with what they're doing. Would you complain about the rain if it ruined your plans? Probably. If it ended up being a tornado that ripped apart the fairgrounds? You'd definitely talk then. Pain is no different.

Well... I mean, are there people out there who can manifest physical pain because of an underlying emotional issue?
This one is a tricky one. As Ms. Veasley points out in the video, once, ulcers were thought to be manifestations of stress, and signs of a weak character. Now we know that it's a bacteria. There are people who spent thousands of dollars on psychiatric care who didn't necessarily need it. They were blamed for their own disease. There are plenty of doctors that think fibromyalgia is a hysterical disease, brought on by stress. However, they also thought Sjogren's Syndrome was rare until they made the second antibody test. Now they know it to be the second most common autoimmune disease. I wonder how many people diagnosed with fibromyalgia are possibly suffering from an unknown or undiagnosed autoimmune disease? It took years before I ended up with the right neurologist who said, "It's small fiber neuropathy causing your pain. You have an autoimmune disease. It's going to happen."

Now, on the same token, I do know that I can cause myself a stabbing pain underneath right my shoulder blade (and only my right shoulder blade) when I am really, really angry with someone and trying to ignore my anger. But in that case, I've usually been sitting in my fury for hours, so it's no surprise what triggered what first. Also, I get migraine headaches from stress, but strangely enough, it's the decrease in stress that triggers me. I learned this one after my father went in for emergency heart surgery. I was fine (which was amazing to me) the whole time that I was sitting there worrying and pacing. When I got the call that he was okay and let out that breath of relief and relaxation, it wasn't five seconds later I was on my knees in blinding pain.

But the point that Ms. Veasley makes that I think is all important, is that we just don't know that much about pain! We may think we can sit in judgement and tell other people that they just need to read this book and they'll be able to fix their problems! No!! The truth is, we are idiots about pain, our doctors don't get enough training in it, and we spend less money in research on it, even though chronic pain affects more people that cancer, heart disease and diabetes combined. We barely have any idea how the skin works, and we now believe the skin has a HUGE role in pain control.

Even if the emotions are manifesting pain, that doesn't mean we should dismiss the pain, or the person for "causing their own problem." On the contrary, if their nervous system is wired such that emotions do cause physical problems, that's a serious issue that needs addressing. We can do much to shore up the person emotionally, so that they don't fall prey to their condition so often, but life is difficult, and break-through moments are going to happen. My experience with migraines is like that. How exactly does one prepare for the stress of their father going into emergency heart surgery? The answer: you don't. Our only option is to fall apart an pick up the pieces on the other side.

All in all, I am very happy to see this video.

Liebster Blog Award!!

I have been awarded the Liebster Blog Award by Amy Junod at Falling with Grace. She deals with Sjogren's Syndrome, but more than that, her blog deals with the important part of remembering that it's not the mistakes we make, it's our recovery from them that counts. Go check her out!

This award is given to bloggers who inspire you and have less than 200 followers. The Liebster Award takes its name from the German word meaning ‘Beloved, Dearest or Favorite’. I’m humbled and honored to receive this award.

As part of the tradition it is passed along to 5 bloggers that have motivated and inspired.

To accept the award you must:

1. Link back to the person who gave it to you and thank them.

2. Post the award to your blog.

3. Give the award to 5 bloggers with less than 200 followers that you appreciate and value.

4. Leave a comment on the 5 blogs to let them know that they have been offered this award.

I am honoring the following bloggers for their wonderful contributions to the health community.

Deb, over at ABCs of RA blogs about the issues of chronic illness through her eyes as a patient with Rheumatoid Arthritis, a long-term disease that leads to inflammation of the joints and surrounding tissues. (It can also affect other organs.) She also tackles the personal and psychological issues that arise with any chronic illness.

Lori is a new blogger at Carpespero. She's dealing with Stage 3 Non-alcoholic fatty liver disease, and is in the process of trying to get on the liver transplant list. She has amazing strength and talks about some really tough subjects with amazing openness and honesty.

Wendy, at Depression Getaway deals with clinical depression and all the trappings that come with it. I love what she teaches in her blog, how we don't need to be victims of our disease. A very good read.

Jennifer is an incredible Health Activist and blogger at Understanding Invisible Illness. Her recent blog carnival was a huge success. Watch her blog to learn about other blogs, or just for her wonderful insights. She's a gem!

I'm actually not sure how many followers, Gary B. Rollman (Professor of Psychology, University of Western Ontario, London, ON N6A 5C2) has, but his blog is a must follow for any one dealing with pain. He blogs at Psychology of Pain.

Thursday, March 15, 2012

There is no Over, only Through

For the folks who aren’t chronically ill, think of every time you’ve been injured or severely sick. Perhaps a broken bone or pneumonia landed you in the hospital once. There were doctors and medications and instructions. You did everything they asked, all the while upset that you had to deal with this (rightly so) and wondering, “When, oh, when does it get to be OVER?!” Imagine that time. Remember being stuck in it, and all the things you couldn’t do, all the help you had to ask for, how much of an inconvenience it all was, how people had to be patient with you…

Now imagine all that, but knowing that it’s never going to be “over.” It’s never going to get better. That your body will only get worse given time. Those crutches are staying. Those medications are part of your life now. The doctors and staff at the ER will know more about your life than your hairdresser. You’ll actually hear those terms enough times to know how to pronounce them. People will stop being patient and wonder why you haven’t learned to live with it yet, even though the symptoms feel as fresh as day one, every time. Vomiting always feels like vomiting. Kidney stones always feel like kidney stones. What we do get better at, in the long run, is getting angry at it.

Our disease (literally dis-ease) is something we hate about our life. It’s like being shackled to a monster. We have to drag this ugly, demanding thing around with us every where we go! It’s never not there. We can sometimes forget for a little while (#epicwinning), but it always comes back. We hate it about our lives, and we hate it about ourselves. Even though the disease may be the responsible party, we, the person, have to take responsibility for it. “I’m sorry, I tripped over my disease. I’m sorry, my disease is throwing a tantrum. I’m sorry, my disease is a jerk and won’t let me come out to play…” Pretty soon, I feel like the jerk having to explain all the time…

But it’s really, really dangerous to look at my disease this way. Pretty soon, I’m hating me. And that’s the least constructive place I can be.

My neighbor is involved in mix martial arts and she has inspired me. She's a cute little thing and you never would guess she could kick your butt. I was looking at some of her videos from a recent tournament. How those ladies compete is not a natural way to move. Watching the competition videos with her she would point out her mistakes, "now if I was paying attention there, she wouldn't have gotten me into that lock...". After the tournament, she had mean bruises and a few nasty bumps on her head. But these injuries didn't make her a victim. They made her a bad-ass.

Pain and suffering isn't always a negative thing. If it is pain and suffering we have chosen to accept (as, say, a means to an end) then we're a lot less likely to feel tragic about it. It's part of the process, right? Just the price of admission... We all understand that good things generally have a price tag stuck on 'em in some way. Whether it's enduring hundreds of class-hours for a degree, or working your way up the ranks in the military, or meticulously watching your weight to look good for your 20th high school reunion, we understand pain is a part of life. So isn't it reasonable, then, to say that the pain and suffering of my disease is no different? Pain is pain. It's the same nervous system. It's the same brain activity. So why would the bumps and bruises I get from one activity could be seen as triumphant, and the bumps and bruises of another activity seen as evidence of loss? They get you the same funny looks at first... "What the hell happened to you?!"

I have a scar through my eyebrow from a freak croquet accident (a long story for another day). The doctor who stitched me up told me to tell everyone I was on a secret German fencing team, and to graduate, everyone must leave with a scar. This one is mine. A scar on a woman's face on its own could be something to really be ashamed of, but add the cool story and it becomes mysterious and romantic...

Part of the problem is the frustration. I used to be able to walk just fine, thank you very much. I could leave my car at home, walk 5 miles, go shopping, and walk home again... just because it was a nice day. Now I have to hope that a nice day outside coincides with a nice day inside my body so that I can enjoy the day! And I have to drive. And sitting for most of the time is mandatory. Bah!! That certainly takes the fun out!

I can compare my life now to the life I knew before I got sick, and it will fall short in a lot of ways. My dreams at night tease me with visions of a body that follows my commands, instead of commands me about... I can dwell on all of that and be miserable.

Or, I can envision that I am on a quest to earn my black-belt in illness arts... That the bumps and bruises are testimony to learning process and something to be honored by rather than ashamed of. Yes, I am dealing with a storm of invisible problems that makes it difficult for other people to have sympathy for me. But I don't look sick? Thank you! I was hoping it wasn't immediately obvious. Just because other people have difficulty recognizing my problems and accomplishments, does that mean I should devalue my efforts too? Absolutely not.

I may not be able to get over this. But I can find a way through despite it. I don't have to find the light at the end of the tunnel. I can BE the light instead.

Tuesday, March 13, 2012

When the cards are stacked against you... Reshuffle

I have heard people say time and time again that they don't know how I do it. "That is entirely too much for a person to handle!" I've had one say. And yet to me... I can't give it any credit. When I get taken over by these dire health moments, it's luck and instinct. It has nothing to do with me. I'm just holding on! I'm not clever or wonderful in these moments. I'm just a living organism desperate to keep living. I believe every one of you would do just as well, if not better, in my shoes. You'd get the job done, and probably with less whining and kibitzing! I honestly wish I could shut up about all of this and just live life, but I've been unable to do so. Instead I've turned it into a blog so I can fake that all my complaining is respectable. Funny thing is, I accidently found a way to make it successful. (Sometimes it seems the only way I find success is to trip over it.)

I started this blog because I was miserable. In my mind, I was a wretched thing like something out of a Dickens nightmare. I was huddled in the darkness, alone and doomed. Then the other part of my mind kicked in. This part of my mind was more like the Ghost of Christmas Present, gentle and joyful. She laid a hand on that wretched child's shoulder and said, "Now see here... You know you're not the only one going through this and you know you don't have it as bad as you could. If you want to learn how to do something yourself, try teaching it to someone else, remember? Now think... if you wanted to teach someone else how to get through this, how would you do it?" And like a dawn breaking, suddenly I wasn't in the darkness. I was in a lecture hall. I wasn't dressed in rags anymore, I was in a nice wool suit. And I also wasn't a child... I was an adult, standing tall.

The lecture hall I had in mind was very specific. It was the lecture halls I had when I was a science major at Saint Louis University. There, the seats slope downwards like in a theater, to accommodate class sizes of 300 students. But more importantly in my mind, I'd be lecturing from a point where the students look down at me. Yes, I'm the one lecturing. But I must always remember to present my teachings as a gift or an offering. Because in the end, it's not my lecture that's important. It's what the students can make from it that is.

Suddenly, everything I'd suffered was of value. These weren't just things I had to go through in my life. These were now things that I could use to help make someone else's life better. It wasn't just my loss. It was someone else's gain. And then too, my inability to shut up about it suddenly became a boon. It was no longer embarrassing that I was an unabashed exhibitionist, ready to share the details of my personal life with strangers. Now, I'm an activist, inspiring others to share their experience, strength and hope as well!

How the heck did that happen?

One thing I will give myself credit for is that I refuse to surrender. Sometimes, that's a terrible trait to have, especially when someone wants to be left alone! But like the title of this entry (given to me by my lovely cousin, Jeremy Diakonov-Curtis), I've decided to reshuffle the deck. The things that give me trouble I will use to make some good. The things I am terrible at, I will admit, so that others can know they're not alone. Like any human being, I have my weak moments. And like most people, I underestimate my own abilities and don't give myself enough credit.

It's difficult to be kind to myself in a world where I have trouble fitting in and keeping up. My random yelps of pain and discomfort are disturbing to people. That's not an unnatural response. And I feel guilty when I cause that discomfort in others. It would be as if I had picked my nose at the table. Not good! If you invite someone somewhere twenty times and it's "no" every time, pretty soon, you just stop inviting. It doesn't matter that the 21st time would have been "yes." So I push myself to go out sometimes, when I know I shouldn't, because I want to keep getting invitations. It's these little, simple things that I fail at, that weigh so heavily on my soul.

Because from the outside, I know you can't tell the difference. I look fine. Stunning, even, sometimes. I don't look like there's all this going on in my life. There's no way to tell that I'm not just irresponsible and lazy. With other sick people, they know immediately. There are experiences that can't be explained, but you can tell by the way they talk and act that they've actually been there. There's a knowing. You can see the dark wisdom in their eyes. It's like a "you had to be there" conversation. Do you get the... And then the... Oh! And sometimes.... And have you ever?.. It's like meeting another member of a fan club, only it's a fandom that no one wants to be a part of!

This illness has made me into someone that I don't like, and that I have trouble admiring. I wanted to take a dream opportunity of being a live-in nanny for a friend of mine and her two wonderful daughters, and I just can't. I'm lucky for the time I can spend with them. I am in no way, that level of reliable, yet---to be able to care for children. It breaks my heart. I don't get to be the woman I want to be. I only get to be the woman I can be. I'm going to have to let what I want, go. I'm going to have to figure out how to be a woman I can be proud of, anyway. And like before, it's going to take seeing my situation in a new way.

So I've got to reshuffle. I've got to change things up to make things work. I can't judge my life now based on how I used to be able to live it. That's just not fair. But, in a way, I don't know that is fair. In a way, the only one who can determine whether I'm actually living up to my potential is me. And I'm not always good at being honest with myself.

That leaves me with only one answer.


I'm going to have to allow myself a lot of mistakes. I'm going to have to eat crow, and worms, and bite some bullets. I'm just going to have to be okay with the fact that I suck sometimes. Sometimes you're an all-powerful wizard. Sometimes you're just a guy in a funny hat. But I've done this before, when I didn't even intend to. I've been able to turn my situation around and find the good in it, even with everything it threw at me. I stopped worrying about me, and started worrying about other people. Now that I've changed my focus, I'm not alone... Now, the fight isn't just about me... Now, I have the courage to stand up and lead the charge again...

Deal the cards. Let's play...

Monday, March 12, 2012

On the other side of madness (Part 2, Depression)

I'll admit it: I'm nuts. There are times when I absolutely cannot sync my view of reality with what is actually going on. I get a soul-crushing depression that tells me I am of no value, that I am actually a detriment to those around me, and I'm completely doomed. When it's going on, I'm a sobbing, inconsolable mess. If you approach me with an attitude that's overly enthusiastic, I'll even get mad at you for being too optimistic! How dare you not see how terrible everything is!! I'll plan out my suicide, short of taking any action, and each step I need to take for my desired outcome (fantasies about letters of explanation that this is my own stupid will, and no one's fault). I'll argue with myself in my head with myself about what I'm thinking, because I know this is a temporary lapse of reason that will eventually pass... I know I'm being irrational while it's happening. The voices in my head yell back and forth at one another like some debate on the floor of the House of Commons... Yeah... that's nuts.

I don't mind it so much once I get to the other side of it. It could be a lot worse. I could not have that little voice of reason in there that's able to step back and see, and argue for holding on. I could actually believe the doom and gloom in my head. I could believe I was justified in spreading my misery around. I could have the possibility of not reaching an 'other side.' Oh, yes... things could be much worse. When I do get to the other side, it's like a storm has passed. The calm is deafening. The stillness is eerie. Weren't we just holding on for our lives a few moments ago, hoping the house didn't fall down around our ears? Now it's blue skies and chirping birds... how did that happen??? Ah, the joys of faulty neurotransmitters.

There are a couple of things about this, beyond my own suffering, that bother me. One, why isn't there a medication for the treatment of acute severe depression? Long-term antidepressants help raise the day-to-day functioning, but they do nothing for acute episodes. The best we have is tranquilizers to make people so blotto we don't hurt ourselves or someone else. But that's not a treatment. That's a last-ditch effort! Two, how do I seek treatment for acute episodes without getting the stigma that I am irrational and incompetent---someone not to be trusted? I'm not nuts all the time. Just every once in a while. I'm aware that it's happening. I'm not completely delusional. I can be reasoned with. I'm just really, really sad. Take care of the sad and I'll be right as rain again.

We've separated the medical from the psychological. My mental health counselors love me. I'm a great communicator. I'm self-analytical. They know I've got a better handle on this than most. I'm a big girl. I know that feelings aren't facts, and I want to be responsible in my behavior. I have self-care practices that keep me safe for the most part. But sometimes, what I can do at home just isn't enough. I need the help of a professional. I don't need a psych ward. I'm not out of control. I just need something to turn off the stupid, destructive voices in my head. I know they'll go away eventually on their own. But I've got to be able to hang in there until then. That's difficult sometimes. We don't have anything available for that in our medical arsenal, and our doctors don't get training in how to deal with episodes like this. Once it's a mental health case, they'll wash their hands of the patient entirely, even if there are underlying biological problems. Doctors don't do wackos. That's the head shrinker's job.

So instead, I sit and sob at home, one side of my brain lamenting that everything is awful, and the other side of my brain going, "We've been the most successful recently than we have been since this started! Your doctors are listening and helping. You're to the point where you can do some physical therapy! People love your words! Come on, girl... things aren't that bad!" Meanwhile the other side of my brain cries, "But we've lost everything we loved in life! We can't do anything that brings us joy like before! It's all ruined!! I'm ruined!!! No one's ever going to love me! I'm broken and should be left out for the wolves!" (I'm spectacularly good at beating myself up....) Once the storm passes, I can sit and calmly say, "Yeah, $#!+ sucks... But we've done more with less. This is going to be difficult, but it's not impossible..." I am fully aware that the bad voices in my head are not truthful. They can still incapacitate me, however. That I don't like.

How do I help the storm pass? Sleep. Lots of sleep, showers, and not doing anything that requires making a decision. When my brain is out to get me, I will sabotage myself in a heartbeat. I will do something to make the situation worse, because I feel that life should be awful. And that's crazy! I know it. So I don't allow myself to do anything important. It's just a bad idea. It's better to just hermit for a while and try not to do anything (especially interacting with others!).

I'm lucky in that these episodes only last a few days at most, then I can pull it back together. If they were longer, I'd have to do some serious re-evaluation of my mental health care. Right now it's the equivalent of PMS, and that's something I can manage on my own. Still... it would be terribly nice to have a treatment instead of just coping mechanisms. It would be nice to be able to just brush off my shoulders and keep going. Sadly, that's not an option yet. In the meantime, I'll ride these Moments out as best I can, and just get back to business on the other side.

(Part 1)

Sunday, March 11, 2012

Fall down go boom (Part 1, Depression)

Right now I'm real shook up because it's been a terrible day. This was supposed to be an entry for a blog carnival "share posts about successful treatments/procedures that have helped make your life better" hosted by the lovely, Jennifer Pettit at Understanding Invisible Illness. Ironically, my invisible illness got in the way. I'm in the thick of it. It's damn near impossible to be positive. Everything is wrong. I'm wrong. And I'm trying to find my way through anyway.

I feel like I can't win for losing. Any little progress gets wiped away with the next wave of symptoms. I can't go out for a night of fun without it costing me the entire next day. I wasn't even rambunctious. I didn't even try and dance for a whole song. Only a minute or so. I was fine. I made it home. I got to bed. And then a few hours later, I'm springing from sleep like the devil is on my heels to make it to the bathroom before I throw up on the floor. I manage that, get back to bed, only to be woken up in another few hours with the explosion of pain behind my left eye. I carefully get from bed, take out my contacts, and take my medication. I turn on the shower as hot as I can stand, but I sit in the tub because standing just takes too much strength. I let the water splash on me, trying to distract my central nervous system with white noise. That way the explosions going on in my head don't hurt as much.

I crawl back into bed, only to be awoken (this time at a human hour) by a series of esophageal spasms that make it feel like my throat is choking itself from the inside. The pain extends from my jaw, down to the top of my stomach. When the spasms hit there, it turns into waves of nausea. I turn on my back massager to beat the muscles into obedience or exhaustion, I don't care which. I just have to make the pain stop. Nothing else matters. My life doesn't matter. My friends don't matter. My loves, my self... nothing matter but making the pain stop. The world disappears and I am helpless to the pain. It grips me and I am its slave. It's terrifying. It's helplessness like nothing else. My own body---the vehicle for my dreams---isn't a safe home for me. I pray for loss of consciousness just so I can get away from it for a little while.

When I feel better, I try to be responsible. Sometimes I sabotage myself (don't do something I know needs getting done) because I want to be a selfish brat. It's difficult not to feel sorry for myself after going through something like that. I don't wanna put things back in the right place. I don't wanna clean up my mess. I don't wanna finish hanging up the clothes. Pouty, stompy face. But I also don't want to be a five-year-old, so I do what I can and excuse the rest. I have to cut myself some slack somewhere. This is a hell of a lot to deal with. No one has a guide book. No one can tell me what to expect.

This esophageal spasm? Totally new. About a month old now, present on a semi-daily basis, so not just a fluke. I do the research. Not much is known. There are three treatments. Two I can't take and I'm already on the third. (This is all information from reliable places like the National Institute of Health and the Mayo Clinic.) It's probably connected to the other nerve damage I have. But it's new. It wasn't there before. I have improved so much in the past two years in my battle. Yet I'm getting worse. The symptoms are expanding into new areas of my body. More vital areas of my body. It's not just my hands and feet anymore. It's in my chest, in my throat, in my ability to swallow and breathe. The pain comes on and all I can do is react. There is no choice. There is only fall down go boom.

And when I get in this place of pain, I remember how bad it was in the migraines. I remember walking through my house, blind, because using my eyes just wasn't an option, it hurt so much. Years of agony. Over one thousand, six hundred days. One day of brutal, crippling pain, right after the other. I don't know that I have the strength for that again. And it's so easy for my body to return to that place. Additionally, it seems to be heading that way regardless. There was nothing I could have done wrong to cause these esophageal spasms. It's something my body it doing on it's own. It's not punishment for misbehavior. It's just punishment. You'll excuse me for sounding like a teenager, but it's not fair.

When medicine works, it is a miraculous, wonderful thing. But there is so much we don't know, don't understand, and don't know how to treat. Our best just isn't good enough. We try. There are scientists out there diligently working to find solutions to these problems. There are great minds who have dedicate their lives to delving into these mysteries. And there are the medical professionals who have to work the messy seam between scientific theory and what actually happens in the real world. Not everyone gets a happy ending. Not every medical mystery is solved. We can stick a big fancy name on it, but that doesn't mean we understand it or know what to do about it. Not every treatment works. Sometimes there is no treatment. In the real world, bad stuff happens to good people.

I want what other people want. I want to find fulfillment and have joy in my life. I want to be able to brush my problems off my shoulders and grow stronger because of them. I like hard work. I like challenging situations. I like having choices. I don't like it when there's nothing I can do. I don't like it when I'm at the mercy of my body. I don't like it when the things I used to love to do get taken from me because I have to baby myself like some delicate flower. I really don't like it when I don't even have the option to think about where my life is going because the present moment is too pressing and demanding. Living in the moment is not all it's cracked up to be! I like having a future and a past too.

I'm gonna make it work somehow. I get through these days somehow. It's not always graceful or pretty, but I get it done. I'm going to keep going to my doctors and working with them. I'll do the treatments and take the drugs. I'll perform the exercises at home and go to the gym for physical therapy. Anything I can do, I will try, because staying in this is just not an option.

(Part 2)

Wednesday, March 7, 2012

Batmanning for health?

You may be familiar with the internet phenomenon "planking" where people take strange pictures of themselves acting like planks. Well, someone got the bright idea to up the ante and they called it "Batmanning": hanging by your feet like you're a bat. My doctors have now prescribed this for my kidney stones. However, I don't have to go to strange places and take pictures of it, but they want me hanging upside-down! Apparently I haven't been doing enough head-stands in my workout... Why they didn't cover that in grade school P.E., I don't know. I think I should write my congressman.

All kidding aside, they really do want me to do upside-down exercises. Here's an illustration of a kidney. The tube that enters the kidney is the ureter. It divides into branches, and two of them you'll notice point downwards. That's where my kidney stones like to form, just like this poor fellow in the picture. And like babies, kidney stones like to move around, flip over, and all sorts of other fun stuff, which in turn causes pain. They are far from smooth, like the one pictured here. No... these stones are sharp little buggers.

My kidney stones are calcium oxalate. But their either di- or mono- and we're not sure which. Since they've now been pulverized into itty-bitty pieces, I can safely pass them without pain, we can collect them, have them looked at in the lab, and then see if there's anything we can do to keep this from happening again. Below is a picture of a calcium oxalate stone. This one is 20mm wide (2 cm). I had two that were 7mm each. Larger than 5mm and the body can't pass them on its own.

How would you like one of these inside of you?

I'm supposed to drink a liter of water, wait a half an hour, hang upside-down for 30 minutes, three times a day. I have trouble remembering how to eat three times a day! So I'm going to rig my bed to be at a slant (another option), but that runs the risk of causing a headache in my sleep. Sometimes there are no good choices, only choices. lol

So more home medical care, including one crazy internet fad, keep up with my water with a dash of lemon (for the electrolytes), and back to the doctor once the analysis is done. The GOOD news is, all the other stuff I was putting on hole (botox for my migraines, a new health shake) I'm now free to get back to. I've decided to put a positive spin on this whole thing by declaring: "I'm magical! I can make rocks with my body!!!" lol

Make it look awesome, baby... make it look awesome. :^D

[Edited to add] No I don't think it helped. The main thing anyone needs to do is drink lots of pro-kidney beverages.

Tuesday, March 6, 2012

When everything falls down, it's an opportunity to rebuild

Ishvari - the Hindu Goddess of Never Not Broken
This one is kind of long, bear with me... I've noticed a lot, with myself, with the people I've counseled, that we have a tendency to rush through solving uncomfortable problems. It's not just habit... We came to this process for a reason. It makes for a quick resolution so our lives don't have to be interrupted horribly. We tend to forget, however, what we're feeling in the first place. We simply say, "I'm feeling X. X is bad. I need to stop feeling X." Wham, bam, problem solved, right? Except that we've forgotten one key step (and I forget this all the time too...). We forget to check to see if the feelings are reasonable, if they're warranted, if it's not just the feeling we need to solve but that there's a larger problem going on. "I'm feeling pain. Pain is bad. I need to stop feeling pain." This can quickly turn into managing a symptom while a larger problem (the one causing the symptom) festers and grows into a crisis. This is true for both physical and emotional feelings.

The one where this stands out the most is fear. "I'm terrified. Terrified is bad. I need to stop feeling terrified." Sure. I agree. But let's also stop a minute, after the terror has been addressed, and look at what got us there in the first place. What caused the feelings of terror? It may be perfectly reasonable. They may not be constructive feelings right now, but we didn't get to this line of thinking because we were delusional. We got there because we've had bad experiences in the past, and this one is starting to look just like that one, and OH MY GOD GET ME OUTTA HERE!!! WE'RE ALL GONNA DIE!!! This is usually diagnosed as Post Traumatic Stress Disorder (PTSD). They call it a disorder, which by their book is true. But that doesn't mean it's bad. We obviously survived that god-awful situation that made us twitchy. We did something right... Is that really a disorder or the voice of experience? So who am I to say that you're not exactly right that this situation looks like it's heading that way? But is that actually where it's heading? Are we sure?

If we drop a brick from a 60-story building, does it necessarily hit the ground? No. It may hit a balcony on the 32nd floor. Someone could stick their head out the window at just the wrong time. It could land on a truck driving past before it hits the ground. Just because the brick is falling, doesn't mean it hits the ground. Just because I know it could go hell-fire-fury bad, that doesn't mean it must go that way. And even though I see the possibility and the possibility terrifies me, I need to remember that I'm not going into this, without experience and wisdom. I'm a medical veteran. Some folks are actual veterans. We've been the dark places, have been broken to serve a horrible necessity, and come back to try to fit ourselves back into normal society, where people can't even imagine what we've seen. That's lonely. But you're not alone. You're elite.

Much of the problem I see is that we don't always recognize our successes. We take our successes for granted: why keep working on it if it worked? On to the next one. We remember the failures: if we're going to avoid it in the future, we've got to beat ourselves up right good so this never happens again.... That can easily lead to a lot of sleepless nights and poor self-esteem, quickly. Mommy clapped and cheered the first time we tied our shoes. We were so proud. Do we still clap and cheer each time successfully tie our shoes? No... we've got this one in the bag. We're an old hat at it. No need for praise, I know I'm a champion shoe-tier. It's when I'm not sure of my skills that I want the reassurance and the recognition.

I don't want you to hear, "I'm sick! I'm sick! I'm sick!" all the time. I want you to hear, "I'm dealing with something new and scary that even my doctor, the professional, can't tell me about very well... I'm scouring the internet because no one can tell me what's going to happen to me, and everything I thought about the world has been turned upside-down!" But that's a mouthful, and it took me over a decade of research to realize that's what I've been trying to say this whole time!

And though it may be silly, I've taken to rewarding myself, like I was when I was a child, when I'm able to do things that I normally can't do because of my illness. I'll clap and cheer, by god. Yes, I was an old pro at that... under healthy body conditions. But now I'm going at this on the expert difficulty levels, so there's going to be a learning curve again. Things aren't going to come as easily. It's going to take more work for less payoff. In some cases, I'm going to have to come up with an entirely different game plan, test it out, and find what works by trial and error. So it's doubly important that I recognize what an achievement it is. It looks the same as the million other times I've done it, but the experience is not the same. Getting through it wisely is what makes me mighty.

Comparing me to a healthy person just isn't fair. To the healthy person! Sure my young friends can run around and hike and zip and play on the mountainside. But they crash for naps afterwards, while I paced myself and could enjoy the whole day. I'm also an expert at functioning when I feel like crap. Their first instinct is to fall out. Mine is, "yeah... what else is new?" So as they sleep, I'm able to have the place all to myself. It goes back to the old Einstein quote: "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

Sure, based against most human activities, I'm no good at those. But put me in my element, and just watch me soar. I never lose my abilities to handle a crisis or keep going when it gets tough. They sleep most of the time, because "my element" are moments that don't come often, and thank goodness for that. I wouldn't want everyone living in my element. That's just too rough. If my being sick means someone else doesn't have to go through this, I'll take one for the team, no problem.

Too often I think we forget this big picture. We forget that it's reasonable to feel scared and abandoned and inconsolable and all that... Just because we'd rather not have those feelings doesn't mean they're always something to be avoided. Sometimes they're things we need to embrace as part of the process. They're important feelings, and they're uncomfortable so we'll take notice of them! But these bad feelings don't have to be the end of the story. They can be a simple chapter in a long book that ultimately ends up well.

All heroes go through hard times. But because we're the audience, it's easy to say, "Hang in there! you can do this! Success is right around the corner!!" But we're not in it. We're on the outside. It's a different story when we're trying to be the hero, and it all looks lost. It's easy to lose heart in the fight. Because some days it difficult to tell if we're in a tale or triumph, or a tale of tragedy.

It's okay to feel scared, hopeless, abandoned, etc. It might not be fun, but it doesn't mean eminent death (I hope!!). What we can do is slow down and take a look at the feelings. What started me feeling this way? Why am I anticipating that it's going to be like I'm imagining? Where's my evidence? Okay, which of those pieces of evidence are valid, and which are not? Which are pieces of evidence that could possibly mean more that one thing, that I need to watch and get more information on? What could possibly change to steer this situation in a new direction? Can I make adjustments to help the situation have a more positive outcome than the time that scared the bejeezus out of me? What are my options here?

What we may find is that we're absolutely right! We have been abandoned. It is a hopeless situation. We are scared out of our minds with good reason. But that doesn't have to stop us. So we've been abandoned. That doesn't make us unworthy or unlovable. So it's hopeless. That doesn't mean we don't give it our best shot anyway! So we're scared out of our minds. It's SCARY. You're having a human reaction. That's normal and okay. It's what you do with that, that counts.

The abandonment may have had nothing to do with us at all! Sometimes it happens, and it's sad. The one the you wanted with all your heart may have abandoned you, but they may not have been able to see a good thing when they had it. And if they can't appreciate you, why bother? The abandonment may have been a gift. Or the abandonment may be temporary: the other person needs their space because they're overwhelmed and they need to leave. Sure it hurts. Absolutely. But we keep ourselves. We can help that hurt go away. We can give to ourselves what we wanted them to give to us, and in that way we're able to get our needs met enough. Abandonment comes in all forms. Whatever the form, the answer is the same: Use that time to nurture ourselves so that we can be ready, whatever the future brings. Yes, we're lonely, but we can remind ourselves what we love about ourselves, and in that way remember why we're worth being kind towards.

We may find ourselves in a hopeless situation. There are plenty of medical mysteries that baffle doctors and end up as tragic tales of suffering and death. If you were sick with one of these diseases and not depressed, I would wonder what's wrong with you. It's normal to feel upset about being sick!! Good lord, you "normal" people have no idea how much you whine when you get sick. You think we whine? Dear lord... If I had a tape recorder, you'd sing a different tune! Lol. I see it in my Facebook news updates. The chronic illness folks only complain when it hits epic levels. Healthy people complain at the first sign of symptoms. "Sniffles and sore throat. Oh, man, I hope this is just seasonal and I'm not getting a cold." Compared to, "Had to go to the ER again last night. Thankfully it was only a 4 hour visit." It's two completely different worlds. You can't compare the two situations or even call them similar. So we shouldn't berate ourselves, on either side. Don't judge a fish on it's ability to climb a tree.

We may find ourselves inconsolable. That's okay too. There is something to be said for allowing ourselves a complete and total breakdown. Sometimes, we just hit our limit and have to stop and rest. When we do, all the emotions that we've been pushing aside because we've been trying to Get Stuff Done, come rushing to the surface. We break down. We feel weak and vulnerable. We may feel, because of all this, that we've failed or we're not up to the task. This isn't necessarily true. It may just be that we've hit our limit and need to rest. We need to take a break and concentrate on something else for a little while, because we're frustrated, feeling hopeless and trapped, and it's driving us crazy. None of that means we're weak or inadequate. No one can stand on the shore and hold back the tide. If you judge a fish be their ability to climb a tree... It means we're human animals and we just found our threshold! Like the govenor on a car engine, we can press the gas all we like... the car is not going to go faster. It's okay to allow ourselves time to stop, rest, think things over without pressure, and try again later. Life and love are marathons to be endured, not a race to be won.

Too often, I feel, we find ourselves in these situations where we're overwhelmed and trapped, where we've run into some life problem that no one could handle but we have to anyway... and we end up feeling miserable at ourselves. The situation was traumatic. So our brain holds on to it, ruminating and going over the scenarios again and again in an effort to try and keep us safe. It's obnoxious at best, and life-crippling at worst. We need to protect ourselves from that ever happening again!!! And because we felt couldn't protect ourselves, couldn't protect our friends and family, we end up feeling like we don't deserve to live. We feel like a failure as a human being. We feel like because we didn't feel brave, strong, or powerful, that we can't handle it it if happens again. This isn't true.

Just as bones can be set, mended, and made strong again, so can our sense of self. We will never again be the person we once were (neither are bones after they're broken), but that's okay. We made it through. That situation wasn't the end of us. And that situation may define us, but we get to choose the definition. Broken? Sure. I'm never not broken. But there's a Goddess of "Never not broken" and she seems pretty cool to me. She rides the back of a crocodile, and she is a warrior goddess. Like the line from the Modest Mouse song, Dashboard, "Oh, it should have been, could have been worse than it had even gone...". The things that I have been through should have ended me. But they didn't end all of me. This is an chance to create a new me that's more of what I like and less of what I don't like. When everything falls down, it's an opportunity to rebuild.