Monday, April 30, 2012

I survived HAWMC 2012!

I *almost* completed the Health Activist Writer's Month Challenge... lol
Wow... I am ready for a vacation from blogging! But what was wonderful about this exercise, was getting to meet all the different Health Activist Writers out there. There are so many people with such great talent, and what a great way to bring all of us together. I had to turn in some of my blog posts late, so technically I didn't complete the challenge, but I am proud of what I did accomplish.

Participating in #HAWMC has given me a lot of great ideas. I want to start hosting guest bloggers here (if you're interested, comment!). I'd like to see if I can organize a successful blog carnival of my own. I am also going to start doing regularly-scheduled features, like: health news round-up, heard around the blog-o-sphere, and visitor submitted writing prompts.

I'm not sure that I want to put up a blog post every day. That was a bit much. I'm not sure that you want to read a blog post from me every day. That could be a bit much, too! I'd like to hear your thoughts...

I am definitely going to participate in #HAWMC next year. It was a lot of fun. But right now... REST!

#HAWMC - Word Cloud

Today's Prompt: Word Cloud! (using "For today’s post we’re going one further and putting your words into an image, a word cloud or tree representing YOUR health focus, interest, or passions." I used the tags in my blog to create my word cloud. But I'm sad! HAWMC (Health Advocate Writer's Month Challenge) is over now! This was a lot of fun. I'm definitely going to join in again next year! ^_^

Sunday, April 29, 2012

#HAWMC - 6 sentences

Today's prompt: "Six Sentence Story. What can you say in six sentences?"
Half of the population has a chronic illness. Of that half, over one-third have a disabling condition, 47% are in chronic pain, and only 4% have a condition that is visible. These numbers do NOT include seniors: 90% of seniors have a chronic illness, and 52% of seniors have a disability. HEALTHY PEOPLE ARE A MINORITY. We chronically ill folk do not need to feel ashamed, or think of ourselves as "less than." The truth is chronic illness comes into everyone's lives eventually... one way, or another.

Saturday, April 28, 2012

#HAWMC - My first seizure

Today's #HAWMC prompt: "Write a post about the first time you did something. What is it? What was it like? What did you learn from it?" My first seizure. Oh, this one is a doozy of a tale. For one, it's embarrassing... because it was my own damn fault. I was taking the medication Neurontin (gabapentin), and I knew that stopping this medication too quickly could cause seizures. But one of those crazy situations developed where, despite all my (*ahem*) good planning, and I found myself caught short.

What had happened was my doctor had told me to increase my dosage of Neurontin, and he would send a new prescription to my pharmacy so that I would have enough pills for the rest of the month. That sounded like a good plan. If it would increase my pain control (which was highly unmanaged at the time), it was worth trying. So I checked in with my pharmacy a few hours after my appointment, but they said they hadn't received anything yet. They told me they would all my doctor and to check back in a couple of days. Satisfied that all would be well, I went home.

I called a few days later and still no word, but I wasn't worried. I continued on my increased dose, even though this meant draining my supply faster than normal. I was in pain. The Neurontin seemed to be helping. I didn't want to slip back into more pain, so I had faith that this SNAFU would clear itself up in time. Doctors and pharmacists are very busy people. They have lives like everyone else. Things come up. This was no big deal. I would be fine.

But then I was getting into week three, and still no word. Now I was really digging into a dwindling supply of Neurontin. I looked at the remaining pills and knew I would have to start the ramp down process. I was calling the pharmacy and my doctors office and somehow, I kept falling between the cracks. I measured out the pills I had left, and started taking less and less---stretching my supply out as best I could---until I would be at zero pills or at my next doctor's appointment. I cut the noon dose first, then halved the evening dose, then tapered the morning dose, then down to one pill a day, until nothing. It was stressful, but everythign seemed to be working out.

Until one night, when I got an awful migraine. Neurontin helps with my migraines, and since I was no longer taking it, this one was a whopper. I did all my in-home health care that I could; ice packs, darkness, quiet, Advil... It wasn't making the migraine go away, but it was tolerable enough if I didn't do anything. It was summertime, and although the air conditioning was lovely, the sound of the machinery running was not worth the cool. So I was sitting outside in my garden shack (to keep the street light out) trying to ride it out. I got a craving for some caffeine, so I walked inside to get a soda.

As I crossed the concrete terrace to the back door of my house, I felt very strange... as if I was viewing myself from outside myself, yet I could also see my way to the back door. I was woozy, but I thought that was just the migraine. I had a strange metallic taste in the back of my mouth like copper or brass, but I wrote that off too as I often experience strange smells and tastes (or a complete lack of smell or taste) with some of my migraines. No big deal. Nothing to be alarmed about. I opened the door, went to the kitchen and poured myself a glass of Coca-Cola.

I took one sip and thought to myself, "Wow, a coke sounded good, but man it did not taste good. Gods, I hope I don't throw up from this. That would be obnoxious... Hey... I feel funny. I should probably set this glass down."

Suddenly, everything changed. I remember darkness engulfing me---like falling asleep---and then the next thing I know I'm waking up to the sound of what seemed like drums. I listened a little closer and thought, "No, that sounds like someone banging on our floor! Who the hell is stomping their feet that loud? My roommate is asleep... Oh, wait... that's ME! I'm having a seizure and my flopping around is banging on the kitchen floor. Oh, crap."

Finally I was able to pop back into my body, like snapping fully awake all of the sudden. And for some reason, even though I was lying on the floor, I looked up and directly behind me, and there was my cat, sitting and watching with a look on her face like, "What the eff just happened to you?!? Sighing, I climbed to my feet to assess the damage.

Luckily, I'd managed to set the glass down, spilling the contents, but at least it was on the counter and not the floor. I cleaned that up and put the soda away. Then I decided I still wasn't feeling too well, so I should probably go lie down. I figured my bedroom was too far away at this point, so the couch would serve just fine. There were pillows and blanks there. All would be good.

I took two steps towards the living room, and on the third step I dropped. This time I didn't hear anything. I was completely blacked out. It, too, passed, and I snapped awake again. This time was terrifying. When I opened my eyes, I was staring at the underside of our dining room table. In my seizure, I had managed to flop my way beneath the table. Now I was scared. When I was in my 20s, I heard of a friend of a friend who had died very young as a result of his seizures. He'd fallen and hit his head on the bathroom counter and bled to death. I was underneath my dining room table. How I didn't hit on the way down was amazing to me.

Now I figured it was probably a better idea just to crawl to the couch. Walking was apparently no longer a safe activity. My cat was still watching me like I was a total weirdo, so I gave her a few reassuring pets and I moved on my hands and knees to the couch---only to realize that the coffee table we have is metal and glass, quite sharp and strong (to which my shins, and their multiple violent bruises, could attest). I looked at the couch. I looked at the coffee table.

I looked at the couch again, with its soft, fluffy, cloud-like pillows...

I looked at the coffee table with its cruel, sharp, sword-like edges...

I looked back at the table I had just crawled out from...

I grabbed a pillow and a blanket,
And fell asleep on the floor.

Never again.

Since then I have been much more careful about my medication, giving my doctors at least a week (5 business days) to complete a refill request, even if they only request 2. I have one of those gigantic pill organizers (four slots for each day of the week) to help me keep track of my pill supply, and give me ample warning for when I need to call in for refills. It's been about a year now, and the practices I have put into place have seemed to work. (I also never increase my medication without getting the new supply first. I trust my doctor.. but he's human, too.)

My first seizures, and hopefully my last!

Friday, April 27, 2012

#HAWMC - 5 Challenges, 5 Victories

Your Top 5. For today’s post we’re making a list of our top 5’s – whether they be for your health condition or your Health Activism. Take some time to think about your experiences and develop your top 5’s – the 5 most difficult parts of your health focus and the 5 small victories that keep you going.

Top Five Challenges
These are my top five challenges, not because they're difficult per se. They're my challenges because they matter most to me. These are the things I want to get right. These are the challenges I've chose for myself, because I like these challenges.

5. Turning my frustration into something constructive.
4. Seeing the bright side of a terrible situation.
3. Overcoming stigmas and prejudices.
2. Empowering others.
1. Finding. The. Words.

Top Five Victories
All of my victories have been things that I've been able to find as a result of my Health Activism. It's only been a short amount of time, and I've already been blessed with so much! It's enough to make my head spin!

5. Finding my calling.
4. Great doctors who were able to (finally!) manage my symptoms.
3. A cure for my disease.
2. My Unicorn Sister.
1. You.

If you're reading this, you are a victory for me. What I do here is only good if it's able to help someone else. Yet, right now, the only way for me to do that is by you finding me. This is a victory that I write for---finding the message that helps you. But I have to rely on the generosity of the universe for our paths to cross, for me to find the words, for me to choose the topic that helps you. Somehow, all those things come to pass, and here you are! That's an awesome, and my favorite, victory.

Thank you.

Thursday, April 26, 2012

#HAWMC - Tagline

Today's writing challenge is... Wait. This can't be right. Today's challenge is: Health Tagline. It’s day 26, are your hands sore from all the typing yet? Don’t worry, today’s post is meant to be short. However, it’s not promising to be an easy one, as great taglines are an art form themselves. A tagline is a clear and concise statement promoting what one has to offer. Great taglines are inspirational and thought provoking and create a first impression, which your audience will use to remember you. Um... does anyone here not know what my tagline is?

Let me tell you a bit of how I decided on my tagline... It goes back to a story I read as a kid (and can't remember the source now). Two friends are teaching a boy with a peg leg how to manage his disability, so he can race with the other kids. To demonstrate, one of the healthy kids borrows the boy's peg leg to show him how he can race better, and even have an advantage over boys with two legs. The young boy complains that he can't do that because the peg leg hurts too much. The healthy boy responds by lifting his pant legs to show all the purple and blue bruises he got from giving that demonstration. The message was clear---of course it's going to hurt. Don't let that stop you if it doesn't have to.

The young boy with the peg leg goes on to win the race. Predictably, the other boys now claim he cheated and had an unfair advantage with the peg leg. The two boys who helped him stand up for him and explain how hard it is using a peg leg, and if they think they can do better, they can try. The other boys do, and are able to get a new perspective on what the young boy is going through. All the boys at the end have a new respect for the peg-leg boy, and he's welcomed back into the group. Like from Day 17, "It's not the mistakes we make that matters. It's out recovery from them that counts." -Deng Xiaoping

This story, coupled with the Mark Twain reference in my bio, lead me to my motto: Make this look awesome. I may not be able to do anything about my disease. But I can do something with how I react to my disease. I can make the best of a bad situation, so much so that people think my obstacles are unfair advantages. To me, that's beating my disease. I can't make my disease go away, and I can't always change how it impacts my life, but I can still keep it from winning. I can make this---whatever "this" is---look awesome.

Wednesday, April 25, 2012

#HAWMC - Day 25 - Third Person

Think of a memory you have – and write to recreate it. But, inside of going into it as yourself, go into the story as a narrator. Describe your memory using the third person as if you were a character in the story instead of the one telling it. As you write, use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue in your memory.

The familiar strains of a beautiful song ran through her head. "Oooohhh sometimes... I get a good feeling. Yeah." The cool night air played against her sun-burn skin. "I get a feeling that I never, never, never, never had before, oh, no. I get a good feeling, yeah. The song had been running through her head for a while now. She had noticed her mood was improving greatly, and this worried her. Promises of better days ahead and hope for a brighter tomorrow was often something that left her disappointed when the darkness remained. Hope wasn't a guarantee. Nothing in life was, but death. But even those morbid thoughts couldn't shake her mind from the obvious truth: she felt better.

It had taken a lot of work to get her there. She was on four different medications for pain, two for the chronic nausea, and three to keep her alive. She was also on a head med, because tough times are difficult to go through, and the quick thought entered into her head, "What if I could come off of that too?" But then she quickly corrected herself, "No! Don't think that! Mustn't think that! No getting hopes up! Hopes hurt..." And she pushed the thought from her head before she could day-dream about it. If that day came to pass, it would come to pass. Anticipating it didn't help.

"Oooohhh sometimes... I get a good feeling. Yeah." The combination of drugs was working, and it wasn't a combination of drugs that was going to affect her thinking. Hallelujah! This was better thank what she had hoped for in terms of pain care. Her case had been so difficult for so long, forcing pain doctor after pain doctor to tell her, "I'm sorry, we have nothing left for you..." But an old medication that had stopped working had started working again at a lower dose, and a breakthrough in her diagnosis had led to the discovery of two other pain medications she could use. Now all of this in combination had her blasting through limitations she used to have before and waking up the next day not much worse off than the day before. It was almost like being healthy. "I get a feeling that I never, never, never, never had before, oh, no. I get a good feeling, yeah.

Granted, it had only been a week of activity on the new medications, but what a week! Every day was used for activities. That was unheard of. She was traveling and not falling apart at her destination---a ten-year first. If she could keep stringing together days like this, she'd be a force of nature! Physical therapy had already been going well for a month, but now she could tell her therapists to really push it---she had endurance again. "Oooohhh sometimes... I get a good feeling. Yeah." It had been a long, hard climb, but things were finally looking... (what was the word she was looking for?) ... manageable.

She'd known that she hadn't looked sick for a long time, but now she was beginning to feel it consistently... reliably... even under very taxing conditions. Things were starting to look somewhat normal again."I get a feeling that I never, never, never, never had before, oh, no. I get a good feeling, yeah. She'd been working at home at a steady pace and was starting to trust her ability to manage her symptoms so that they were completely invisible. She was starting to be able to behave like a really, real adult again. That's what was helping her mood the most: being able to be responsible towards herself and other people again.

Yeah, that was a good feeling...

#HAWMC - Day 24 : Health Mascot [late entry?]

Health Mascot. As a Health Activist, your voice is prominent within your specific health community. A mascot is associated with a distinct group or team. Branding your voice with a mascot can be an imaginative and gratifying activity. Here, you can pay tribute to your favorite mascot or you can create an original character. Ensure, whichever you decide to go with is related to your Health Activism. So for today’s prompt – give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!

Ah... though this is a late entry, I already had complete this on my blog last year! My mascot is the Unicorn. After a day of frustration, I vented the following to my friends:
We tell doctors, when you hear hoof beats, think horses not zebras. But when it's not a horse, and it's not a zebra, have a little humility and faith of heart. You just may be hearing a unicorn.

I call myself a Medical Unicorn because I have a disease that, as of 2003, there were only 336 cases known. I was diagnosed in 2008. As such, I use the Unicorn as my profile picture. My purpose here is to take the suffering I've been through and turn it into something good. The unicorn's horn was imbued with certain powers, and one of them was healing. I have been able to experience a great amount of healing by sharing my thoughts with you here.

And through my participation on line, I was even able to meet another unicorn like me---a woman with my same disease! Someone I could talk to and compare notes with... it was truly a miracle meeting her. She has been such a blessing in my life, and is truly a beautiful soul. And more than that, we've been able to completely validate one another's symptoms. What we have, we share in how it's manifesting. We have the same chronic pain. We have the same chronic migraines... it's been such a relief to be able to say, "Okay... it's not just me! It is the disease."

She is my Unicorn Sister.

#HAWMC - Day 23 : Writer's choice, Surprise road trip [late entry]

Today's prompt for day 23 of #HAWMC is another writer's choice! I need to be good about finishing the challenges from here on out because my last "get out of blogging free" was taking up by bad network issues last night. I had a picture of my post-it and everything. Had a blog post ready to go, all I needed to do was upload it. And then network fall down go boom. But the bigger thing is, I got roped into a surprise road trip. I'm absolutely overwhelmed, but I'm keeping my head above water... It's been awesome and I'll have more to update later, but right now is check-out! Yikes! lol Aaaaand... I couldn't post this on time. I have a good excuse, however.

I will accept that I did not complete the challenge as specified. That's okay. I can try again next year! Anyway... what came up is I had a spur-of-the-moment opportunity to visit Mesa Verde and the Dine and Hopi reservations. While we was there, we made some really good friends, and an Elder blessed me. I'm okay with not making the finish line this year for that!

I got to meat some distant cousins (by marriage) who live on Second Mesa. I got a HORRIBLE sunburn, like a silly Bahana (outsider), but that earned me some pity and I received an aloe plant to take home with me. I found out some great information on traditional Hopi art classes that are being held that I can take. I am restricted on some classes, however, as I am not initiated into Hopi ways. But I should be able to learn some other crafts that have always fascinated me. I want to be able to make those baskets that are so tightly woven they can hold water.

I also want to find some way to share my strength with them someday. (I also don't want to stick my nose where it's not wanted, so I need to be respectful in this.) The reason for this is something one of the elders said to me. We were sitting side-by-side, and had been laughing about naughty things (old men always like to tease the girls). We settled into one of those strange, quiet moments that happens after a good laugh. He hung his head, in a despair that I completely recognize, and said quietly, "We have it hard out here." And I could see that it was true. Not for the poverty or the living conditions, as most tourists would expect.

What I saw was that their lives are hard because they have this amazing, rich culture and way of life that's been almost completely obliterated. It's in revival now, but just like I'm trying to rise from the ashes, I know it's not as easy as taking back what you lost. In a way there is no going back. There is also a horrible pain that lingers after great suffering---a kind that can cripple a soul. It can make us feel isolated. It can make us mean. It can put walls around our heart greater than even George R. R. Martin could imagine. Healing takes a long, long time, and even when completed, it leaves scars.

I feel so honored for the time I was allowed to spend there. Though I do feel terrible for not meeting my obligations for the blog-o-thon, I feel it was worth the sacrifice. I would post some pictures, but pictures are not allowed in their culture. But I did see this posted in one of the art stores. The added caption was "Hopi Police."

#HAWMC - Day 22 : Post-it Note [late entry]

For today’s prompt – write yourself a reminder. It can be in the form of an online post – or a picture of an actual Post-It like the ones from the website. I lose my train of thought a lot when writing, so I have little post-it notes all over my computer, my notebooks, my house... Here's one from the book I'm writing. I am a fan of my strange handwriting style.

Saturday, April 21, 2012

#HAWMC - Madlibs!

Today's prompt is to write a poem using's automatic poem generator. I really liked my results, but I needed to correct some things because I chose some strange verbs (because I'm strange like that). I tried to retain the wonderful weirdness that the "Madlibs" created, and only changed case or spelling. I didn't switch out any words. And my poet is Sylvia Plath! I think it turned out pretty nifty...

Soft morning's soft morning

I run my car and all the school talks mountain;
I contemplate my trips and all is smoke again.
(I eat I drink you up inside my town.)

The quests go showering out in blue and curly,
And twisted towel dressed in:
I choose my computer and all the pipe jumps smoke.

I saw that you watched me into dream
And call me mucurial, welcomed me quite satisfying.
(I eat I drink you up inside my town.)

Vision types from the glass, camera's medications select:
Drive shower and breakfast's brush:
I choose my computer and all the pipe jumps smoke.

I wrote you'd commanded the way you negotiate,
But I whisper sleepy and I reveal your clothes.
(I eat I drink you up inside my town.)

I should have showcased a water instead;
At least when a hotel memorizes they follow back again.
I choose my computer and all the pipe jumps smoke.

(I eat I drink you up inside my town.)

- Pam & Sylvia Plath

Friday, April 20, 2012

#HAWMC - "What if there was a cure?"

Oh, today's writing assignment is ironic... I'm supposed to write as though there's a cure for my disease. Interestingly enough, that actually happened to me. Only my disease is so rare, there can't be a clinical trial for it. I just get to try it. And I just finished up my Seattle trip with the doctor who is going to potentially arrange it. I'm waiting to hear back from her on when we get to start. Right now she's getting information from the people who wrote the article on the cure, to see what dosage we need to put me on. If all goes well we'll set a date to start, 16 weeks later I will have survived the treatment, not gained an excessive amount of weight on the advanced steroids, and be without any traces of my pituitary disease. I'm *still* in shock and awe. I never thought it would happen in my lifetime, or to me, or to a disease so rare!

Ironically, I was in a full-blown passive suicidal ideation phase at the time, when I got the news. I was angry and frustrated, but I had already started this blog, and my goal here was to not give up. My whole purpose for this blog was to figure out how to make a slow, painful slide into the grave something that I could endure. I was going to put a brave and cheerful (but not sugar-coated) face on, and teach other people how to go what I was going through, so that I could in turn, teach myself. My mother, bless her heart, had some good wisdom. One piece was: "The best way to learn something is to try to teach it to someone else." And she's been right about that one my whole life.

When I was tutoring other kids in math, my math got better even if I wasn't in the same class as them. When I started teaching other people how to get through the god-awful emotions that come along with chronic illness, I got better at getting through my own. One clear sign? I've needed less therapy and my psychologists (I see one for meds and one for talk) both say I'm doing really well. I've graduated to phone conversations, as needed, for my talk therapy. My medications we're not changing, because I'm stable on them. I see my prescribing doctor once a month. And this was all before I got news of a cure.

Since then, I also found another woman with the same disease as me, someone my own age whom I could compare notes with... I also thought that would never happen to me in my lifetime! She is, like me, a medical unicorn. We have surprisingly more in common than either of us could believe. She is my sister in this disease---my unicorn sister. And though I am sad she has to suffer like I so, I am ever so grateful for her company. It is a really big deal to no longer feel alone.

It's an even bigger deal to have all my symptoms validated through her near-identical experience of our disease. See... they don't know much about what is normal and a part of our disease and what isn't. With only around 350 cases known, it's kind of difficult to tell what's going on. Additionally, there are sub-types of the disease depending on how the disease was caused, and what part of the pituitary the disease strikes. So it's really difficult to know what's what! But she and I are so parallel, we're both starting to think this is all tied to the pituitary disease. (It's the only biological thing we have in common!)

So for today's prompt, I don't have to imagine. I've been blessed. I get to live the dream. There is a cure. My doctor knows about it. She's researching the protocol for the treatment for me, as we speak. We can get rid of my (potentially deadly) disease, Autoimmune Hypophysitis.

I will probably still have the nerve damage I have, but it will stop progressing. I may even get rid of my chronic migraines! But I find that highly unlikely, based on my migraine research. Migraine brains are different than other people's brains. However, the migraines may decrease in severity and frequency, since the attacks on my pituitary will stop. It's reasonable for a brain to be in pain when part of it is under attack from the immune system. So logically it would follow that if the attacks stop, the pain will stop. It's not a guarantee, but it's a hope, I admit.

In the meantime, I'm full steam ahead on my physical therapy, and I'm improving slowly but surely. My new pain doctor has several options we can try to bring my nerve pain under control, and so far, *fingers crossed*, it seems to be working. Yesterday should have been a really bad flare day, and I did remarkably well for me. Yes, I had an episode, but it was a lot more manageable than in the past. All of this is progress I could not have dreamed of a year ago.

My case is not normal from the word go. People don't get diseases this rare. Cure's aren't found for diseases this rare. Cures aren't found for things like brain diseases. Cures aren't found for autoimmune diseases. None of this should have worked out the way it did. There is DOOM written all over my scenario. And yet, just as dramatically (which makes it even more unbelievable), the miracle happened anyway.

This just doesn't happen. Real life does not play out like this. Not even a Hollywood writer would try to make a story-line like this. It's nuts!

And yet, completely, factually true.

Thursday, April 19, 2012

#HAWMC - Five dinner guests

There is something sacred about having a meal with someone---the breaking of bread, the sharing of sustenance. It is a bonding experience. For today's prompt, I am allowed to invite five guests, living or deceased, to dinner. I would want to invite Dan Ariely, who is absolutely brilliant on human irrationality. Following on that theme, I'd invite Kathryn Schulz, famous Wrongologist. Then I'd want to bring happiness specialists Daniel Kahneman, Nancy Etcoff, and Dan Gilbert. I think after introductions, conversations would start themselves.

I'd want to talk to them about what we understand about the human experience. These are the great minds that have looked at what it means to be human, and the struggles of the human experience, real rubber-meets-the-road stuff. I'd want to discuss how memories, and our relationship to memories, change over time. I'd want to talk about how we seek out happiness and how people can be more successful at finding it. Basically, I'd want to get them started and see how it fell out.

For example, I started this blog post early today, but got so sidetracked that I'm now submitting it with 2 minutes to spare. I think it had a great effect on me, which may have a payout for others in the future, but for today, I kinda flubbed it! Enjoy the links to the videos!

Wednesday, April 18, 2012

#HAWMC - Book quote inspired post: I am a caveman

"[Your body] is an antique biological machine that evolved in response to a world that no longer exists." (The Time Paradox) Today's prompt is use a sentence from the nearest book as inspiration to write, free-form, for twenty minutes. (I cheated a little and went over on time, and didn't quite do free-form. But that's because I love this book, The Time Paradox, and I wanted to do it justice. It explains so much about how difficult it is for out little human minds to wrap around reality. My body's design hasn't really changed in the last 150,000 years. My environment, however, has changed drastically---largely due to our own efforts! My analog, caveman brain is in a digital, machine-driven world. Let the comedy begin.

For example, did you know that it's actually impossible to live in the present moment? That's simply true because our nervous systems lag behind what's actually going on. It takes time to see, hear, feel and process all those other wonderful senses---from 10 to 250 milliseconds, in fact. My organic brain is designed to anticipate, because that's the only way we can function in the world when we're always lagging behind. However, this is where everyone gets tripped up. What I anticipate is a story I've made up in my head, to try and predict the future, based on my past experiences. It's still a story. Reality is often painfully different. And if, say, I have an extremely traumatic past experience, that can cloud my judgement of the present moment, because I can now anticipate a terrible future that I didn't know existed before.

Further, I can become so wrapped up in avoiding that potential terrible future that I end up sabotaging myself in the present moment. In my anxiety and attempts to make sure that trauma never happens again, I can in fact create the very situation I'm trying to avoid. I anticipate that someone is going to be mad at me, so I get defensive. But then the person does get mad at me, but it's because I got defensive. They get confused because they don't think they've done anything to get me so worked up. And they're right! I'm jumping to conclusions and trying to anticipate moves. But in doing so, I force the situation to take a certain shape; a shape the other person may not want at all!

If I actually want to respond to the situation as it is, and not how I anticipate it to be, what I have to do is slow down, relax, and observe. My caveman brain is trained to look out for the tiger, find food, survive the elements, and maintain my place in my community/family group. I don't have to worry about predators like my caveman ancestor did. Finding food is as easy as going upstairs to my refrigerator. We don't just survive the elements anymore: we make fashion statements with our clothing. My community/family group is scattered across the country. Is it any wonder then, that I sometimes feel isolated, and adrift in a sea of strangers? Is it any wonder that I struggled a long time for a sense of purpose? Is it any wonder that I startle myself and see danger that isn't really there? No... But the awesome thing is when I change my perspective of a situation, I can change my response to that situation. Instead of making driving a competition with me and the other cars on the road, I can instead envision that we're all being carried on one big river, with different currents, and it doesn't matter if that guy gets in front of me. We're all part of the flow.

From an objective point of view, "bad" things are always going to happen in my life. I can't always avoid them. However, so far, I've been able to survive, despite it all. So I should give myself credit for being able to handle these situations as they arise, rather than always being on the defensive. I can do that with my doctors too. It's absolutely paramount that I treat each new doctor as new, and not a repeat of times past. Instead of anticipating for the bad experiences I've had, I can treat each doctor as a brand new opportunity for success. And by doing so, I'm being more fair to them, treating each doctor as an individual, rather than judging them as a group.

My caveman brain wants to make these associations to keep me safe from encountering the traumas of my past. But I'm a stranger to them. When I act defensive, I'm not giving my doctor a fair chance to do right by me. And I want to be as open and honest as possible. One, that helps them learn what's going on in my body more accurately. Two, it's the only way to build that all-important bond of trust. We may be all civilized and technologized, but human relationships still come down to primal rules that existed long before we built cities. Integrity still boils down to saying what you mean, and meaning what you say, backed up by proper action.

Like no other creature on this planet, we have changed our environment to better serve our needs. All animals change their environment to some extent, and a lot of animals do it with a purpose, just like us (building traps for prey, building shelter, nesting, etc.). But no other species has done it with such understanding of what we are going on about. We have taken the reigns of our fate as a species, and changed how we interact with the world. We live according to a clock, rather than the setting and rising of the sun. We are able to treat disease and strengthen fragile bodies that would not survive otherwise. But underneath it all, we're still just animals. We all have animal reactions, animal irrational behavior, and animal weaknesses. I have to remember that if I'm to successfully take responsibility for my life.

Tuesday, April 17, 2012

#HAWMC - I learned it the hard way...

"It's not the mistakes we make that matters.
It's out recovery from them that counts."

-Deng Xiaoping

Some of the beliefs we hold play a significant role in our lives today because we learned them the hard way. According to human nature, we will make mistakes throughout our lifetime. However, more important than the mistake itself is what we do when we realize we have stumbled. Sometimes, it is tough to address our slip-ups and move ahead. But it’s necessary in life. So for today’s prompt – what’s a lesson you learned the hard way?

I tell ya... some days it seems like I've learned everything the hard way. I never was someone to take anyone's advice---I wanted to sum up a situation myself and come to my own conclusions, thank you very much. I wasn't going to let anyone do my thinking for me. Of course this has led to many a situation where I walked away, more than a little embarrassed, going, "Oh... that's why they say that's a bad idea. Right! Totally got that now." But I still wouldn't trade a lot of my first-hand knowledge. There's learning you get from experience, that no amount of advice can teach.

Question is, is it worth the cost of learning it? The toothpaste can't be put back into the tube, once it's squeezed out. Some things cannot be undone. Some things cannot be unlearnt. There are always consequences, seen and unseen. There are quite a few things where I think... "Ooo... I really didn't need to make that mistake. Yie." But, ya know... it's the recovery from it that counts. Everyone makes mistakes. That's what makes us human. Machines are about perfect. I am not supposed to be a machine. Mistakes are going to happen. A lot. Little ones and big ones. So what? They're not important. What's important is to keep striving despite them.

I've learned the hard way how to read the signs of my symptoms, and how to manage those symptoms. There was no other way to learn but the hard way. They don't give classes on how to successfully manage a chronic illness. No one majors in "how to be sick." These were very personal life-lessons I had to learn on my own. No one else lives in my body but me. How do you teach a feeling? Yet it's in learning those feelings that I can predict what I need so that my disease-caused mistakes are fewer and farther between. I think after my work of 10 years, I'm starting to finally get a handle on how to manage this new, strange machinery, that is my messed-up body. We'll see.

Time will tell.

Monday, April 16, 2012

#HAWMC - Pinterest, I resist thee...

Okay, today's post is supposed to be some image collecting from Pinterest, and I. Just. Don't. Wanna. I mean, I know I'm supposed to be doing all these wonderful social media *things* to get word out there and spread the advocacy and all that... but... No! I am tired of keeping track of one more log in, to one more site, spending countless of hours oooing and ahing over interesting Internet stuff. I mean really. I do that and I can spend all day on the computer and not a single day doing what needs to be done. Cool stuff on the Internet? There's always cool stuff on the Internet. I'm tired, and there's this annoying thing call real life that keeps getting in the way. Sadly, the garbage does not take itself out.

I just got back from a trip from Seattle... I just got over a massive kidney stone... I'm running as fast as my little legs can carry me... I've got a doctors appointments nearly every day this week... Monday (today) is botox to see if we can't really get these migraines under control and use less medications (like Advil, which can harm the kidneys). Tuesday is seeing my new pain specialist AND physical therapy. Wednesday is recovering from physical therapy. Thursday I see my GP to fill him in on everything that's been going on... Plus my brother made an emergency trip out here so he's been in the house. All my routines have been thrown to crap, and I'm trying to keep my head above water. I do not need another distraction. I only just got on Twitter... And all this while managing symptoms and keeping my body in balance, so that I can still pull off this "Adult" routine.

I have done this post today so that I fulfill my commitment to the blog event, but I am not going to participate in today's prompt. Nope. This is where I draw the line. My body, right now, is screaming, "It's NAP time, woman! The bed... it calls to us. How can we disobey?!?" And I've got to tell it, "No. We have things to do. Get those done first. Be the adult. R-e-s-p-o-n-s-i-b-i-l-i-t-y. Play time after." Pinterest is not conducive to these plans. Bless their hearts for wanting to spread the word this way, but I cannot be part of that party.

See you tomorrow!

Sunday, April 15, 2012

#HAWMC - Writer's style

Oh, I love today's prompt. Writing with Style. As bloggers, we should be credited immediately, simply for writing. Writing as an art form and means of expression is losing its prominence within some sections of our society today. Nonetheless, that does not make it any less valuable. Like style, writing is personal. So for today’s prompt – what’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best? Sit down, and I will tell you a tale... a tale of crafting a tale.

First, the way it looks on paper is not the way it comes out of my head. Mostly, the first thing to come to my head is an idea that fascinates me. It's a question that's eating at my brain, or some awful situation that I'm trying to talk myself through, or some article from some "professional" that pisses me off and gets my Scottish up. It's something powerful and moving---an idea that I can't put down. Like that itch you can't reach, and makes you desperately hunt for the back-scratcher. That's where I start. But that's not a good starting point for the reader. That's a good starting point for the writer. Still, I'll leave it at the top of the page.

Next, I expand on the points of my idea. I'll quote sources, explain my reasoning behind this, that and the other. I envision the audience in my head, and what questions they're going to raise. I try to answer those questions as best as possible. I do this in free form, not really caring where I put new paragraph marks or any of that. I'll re-arrange everything later. The point is getting the ideas out on paper. My head doesn't always deal with things in a logical order. One idea quickly branches into the next. I can jump from tangent to tangent like no one's business! But that's not necessarily easy for a reader to follow. So once my first wave of ideas is out, then comes filling in the pieces.

I go back over my big mass of ideas, and I start to re-arrange them in an order that's easier to follow. Then, where the ideas don't flow from one to the other, I'll fill in ideas, adding text so that it makes more sense how we get from this idea to that idea. I read back over it again and again, asking myself, "Now does that make sense?" As I do this, the structure of the paragraphs becomes more clear on its own. There's an intuitive sense, "This is where the new idea starts..." I think that sense comes from just a lot of reading. The more I read edited work, the more I learn how a text should feel as it's read. It's an intuition picked up by a lot of study and practice. (For more information, check out the book, Blink)

Following this, it's also easy to sum up ideas into a logical conclusion. What I learned in school was an introduction goes from broad to narrow, and a conclusion goes from narrow to broad. That is, for the conclusion, now that I've presented my ideas, how do I then apply this idea to the world? How does it tie into something every-day, to which the reader can relate? It's the "Ta-da!" moment, in which everything is brought together. Here's usually the spot where I figure out what I've been trying to say the whole time. I can tie all my ideas into a nice neat little bow.

Now I have to go back to the beginning and see if my conclusion actually matches where I started this whole thing. That's not always the case. Sometimes I'll start writing in one direction and it will take a whole different turn by the end. If that happens, I'll generally toss the first part (as it was only the starter, and the conclusion is what's more important to me). I then write a new introduction that is a better lead-in to what I'm ultimately talking about. The introduction, as I mentioned earlier, goes from broad to narrow. Here's where my professional experience comes in, and working with editors in big corporations. Generally, I want to start with a hook. Something that draws the reader in. It can be an inflammatory sentence (anger is a good hook, but then you have to direct it, like controlling fire). It can be an invitation to an idea, like starting a conversation with a friend. Like a showman, you want to make the reader want to read on. Simple as that.

Knowing how to do that, however, can often seem illusive. I'll write a piece that I think is stunning, and it will flop. Crickets. A few stout followers who always read will read, but no one comes to the show. But then, it will take off, for no apparent reason but that someone found it who passed it on to someone else and, "Wow! Look at it go!" It's not always going to make sense why one article works and another doesn't. Sometimes, you know a piece is going to take off just because of the amount of work you put into it. A year of effort makes for a pretty slick article. Sometimes ideas will stir around in my head for days, weeks, years, before I figure out how to say it. But sometimes even then, it has nothing to me, and everything to do with... whatever it is that makes it finally click. We can't lose faith in our words.

After the hook, I then have to lead the reader back to the idea the got me going in the first place. I've given them a reason to read on, but now I must direct them to what I found so important. "Hey! Come look at this. Check this out... do you see there? What do you think of that?" is basically all that I'm doing. That's the introduction. "Ya know what I think about that?" is all the body paragraphs. It's summed up by, "And that's why I called you over here. Wasn't that cool?" in the conclusion. It doesn't always flow out of my head like that, but that's how I want it to read when I'm done: like a conversation. At this point, giving it a title is generally intuitive; the next-to-final step.

I'll give the article a final look-see, and make sure it flows like I want it to. Sometimes, though, I'll end up reading and re-reading... editing and re-editing so many times that my eyes are dizzy. I will not read the article properly. This I learned from my first typesetting/sub-editing job. We always had fresh eyes look over a document after edits. When you've spent hours crafting a document, we can think the text makes sense when it doesn't actually make sense. Having someone else look at the document before publication can make a huge difference, especially if you can find someone brutally honest. They will tell you what's wrong with the article, rather than just cheer you on for what's right. After someone like that gives it a thumbs-up, you can publish with a clear heart.

And that, ladies and gentlemen, is how I roll. ;^)

Saturday, April 14, 2012

#HAWMC - Confession, and describe your ideal day

Quick confession... I ducked out of yesterdays' post of "10 things you would bring if you were deserted on a desert island" post. I dislike games like that. See, if I were truly stranded, I'd not have access to my medication, and my medication keeps me alive. So, logically, all I'd want is a gun and a full clip. I don't want to suffer a slow death as my adrenals and thyroid shut down. I know what that feels like already. I don't want to ask for just one bullet and end up like Robespierre, just shooting my jaw off, instead of finishing the job the first time. And that doesn't make for a very inspiring blog post! lol

It's tough, sometimes, to fit in with everyone else. They just don't consider things like that. They don't have to. They don't know. And it's better that they don't. Life is hard enough without carrying those dark truths in your head. So I totally chickened out on yesterday's post. It's hard enough for me to live with those dark truths in my head. I'll shut down and end up just staring in horror, transfixed. That's not entirely helpful to living life. So I shove those thoughts from my head. Yup, there's a big scary monster in the room. And? It's not hurting me right now... When it's hurting me, I'll deal with that. When it's not, I'll deal with everything else. Worrying about what might happen is only useful in how it helps us be prepared and act responsibly. But we shouldn't let it consume us.

So on to today's post: "describe your ideal day." Oof... this is another one of those games that stumps me. How would my idea day be? I have no idea... my ideal day would surprise me. My imagination is limited insofar as wanting things for myself. I'll sell myself short every time! It's not that I don't want these things for myself. It's not that I feel I don't deserve them... it's just that I don't know that I want the responsibility of feeling happy. I've gone through enough despair and let-downs that I am very skeptical of happiness. I wanna know what the catch is... I want to know that I'm not going to be paying for it in the long run. That cheesecake may look and be delicious. But is it really worth the 3 hours (minimum) on the toilet that's going to follow?

My poor emotions are burnt to a crisp at this point. Just as I don't want to think about the worst case scenario, I don't want to think about the best case scenario either. Give me my safe, normal, plodding little life. I'm DONE with adventures. I'm like Frodo Baggins at the end of Lord of the Rings. I just wanna go home and rest. What I've been through already is plenty enough already.

So I guess my ideal day would be coming home to the love I don't have, to the family I don't have, and to the life I don't have. Why would I want to dream about that? All that does is set me up for a comparison---what I want versus what I can actually get. Ouch!! Heartbreak city! Longing and desperation followed by all-consuming mourning! No no no... we're not going there.

Instead, what can I do with what I've got? Dreams are phantoms. I've got reality to deal with. I may not be able to get my ideal life, but I can still make a life that I'm satisfied with here. Yes, I can reach for the stars... but if I want the mission to succeed, I've got to make sure that I can take care of every step along the way. There are a thousand things I have to do right to reach the stars, and I'm only on step 7. I don't need to be dreaming about step 999 and how I'll feel. I need to concentrate on getting from 7 to 8.

So, I apologize for not being a happy participant in these latest blog posts. These games should be fun. But that's not the reality I live with. And reality is more likely to smack me upside the head than my dreams, if I don't pay attention. I mean, if the TARDIS were to show up in my living room along with the invitation to travel in all time and space, I wouldn't pass it up. But I've got enough to keep straight in my head, so dreaming does me no good. I'm a sourpuss... don't mind me. ;^)

Thursday, April 12, 2012

#HAWMC - Stream of Consciousness

Day Twelve of #HAWMC: Today’s post is about what’s going on in your head in this exact moment. What are you thinking/feeling/seeing/hearing? How do you feel? What’s popping into your head as you take in your surroundings? What conversations or interactions keep running through your mind? Stream of consciousness is about not suppressing these thoughts but letting them flow onto the page, with or without punctuation, without stopping to think about whether you’d chosen the right word or phrased something the right way.

Oh, my..... this is going to be interesting. For the sake of propriety, I'm going to HAVE to go back and edit because I swear like a f----ng sailor. Sonofab----. lol F--k... what do I want to say? I'm so glad to be home and back in my surroundings. Seattle was wonderful and weird, but I really like it here. This is a good place. I miss my peeps, though... that rips at my heart.

Oh head-hurty. Medication time. Better living through chemistry... mmmm... make the head-hurty stop. (cool breeze on the top of my head: wonderful) Red Bull is nectar of the gods. Must stay hydrated. Remember your kidneys. Good for you girl (ow- fingers starting to freak... damn rain) take care of business. You know even now that you are really f----ng well off compared to a lot of folk. Don't be lazy, this we know. This is a pity-free zone. Just be an adult about it... if you fall, down, you'll manage like you did earlier today. When you can do, you do, like you did later today. You're on track girl...keep it up.

"The goal is to get us out of this situation..." my brother says, looking up from his reverie. I'm glad he's in town. He can get a lot of help here for his Gulf-War-Syndrome. Healing can begin. Plus, he's fun.

Oh, crap, that reminds me... Longmont tomorrow. Luggage. Recycling. Medication/doctor's visit. Need to schedule a follow up. Need to get my calender straight. Need to get the money order for rant. Oh, I need to apologize to my landlord for being too ill to do anything this morning. He's so awesome.

Yie, I hate how it's just never a good idea to procrastinate anything. Otherwise it turns into a sh-tstorm that's just a f----ng nightmare to deal with. And of course, it's gotta be when you say, "Oh, I can take care of that tomorrow...", tomorrow ends up getting eaten by illness. Motherf----r. You'd think I'd have figured this out by now. I've only been tripping myself up since forever. I'm going to have to have a long, sit-down talk with my inner child. teenager. We need to get our sh-t together. This is un-f----ng-acceptable.

Tired tired dizzy tired,
hands they type while they're on fire...

woooooo... that was fun. I'm all wobbly with the flu. Wheeeeee....

Oy. Sleep soon. We slept most of today. We need to be able to pull of tomorrow. Medication, rent, suitcase, recycling. Otherwise the weekend will be HELL. We need to get better about our pill case so the timing doesn't come down to the wire like this. A sting of bad days can throw you for a loop and then the timing goes all pear shaped... Not good. I am not enjoying this anxiety.

My, my, me oh my
little piece of chocolate pie
superhighway in the sky
My mind, me oh my

I am super-swishy delirious. Gotta love the flu. All the drunk, it didn't cost us a penny, and it's socially acceptable. #winning! Oh that reminds me of Jenna Marbles: "Hashtag balling." lol That girl has it going on! Love her sh_t. Wish I could do videos like that, but yie... I am not that good on camera! Oh, well... I write like a motherf----r, so I'm content.

Do not let the fingers touch while typing... buzzing burning owey time. No no no no no. Not good. Okay.... Eyes are shutting down. Bedtime... Goodnight!

Wednesday, April 11, 2012

#HAWMC - Theme Song

Today's challenge is a theme song. Imagine if your Health Activism had a theme song. What song would play when you open your blog page? What would the music sound like? What mood would it capture? Would it make you want to dance? Sing out loud? Cry? Your theme song can be one that you know, or if you’re the singer/songwriter type, you can write your own. Having a theme song is a great way to help set the tone of what you’re trying to communicate, and it’s also great for those little moments when the only thing that will help you feel better is a spontaneous dance party. I think Phoenix said it best in their song, "If I ever feel better..."

They say an end can be a start
Feels like I've been buried yet I'm still alive
It's like a bad day that never ends

I feel the chaos around me
A thing I don't try to deny
I'd better learn to accept that
There are things in my life that I can't control

They say love ain't nothing but a sore
I don't even know what love is
Too many tears have had to fall
Don't you know I'm so tired of it all

I have known terror dizzy spells
Finding out the secrets words won't tell
Whatever it is it can't be named
There's a part of my world that' s fading away

You know I don't want to be clever
To be brilliant or superior
True like ice, true like fire
Now I know that a breeze can blow me away

Now I know there's much more dignity
In defeat than in the brightest victory
I'm losing my balance on the tight rope
Tell me please, tell me please, tell me please...

If I ever feel better
Remind me to spend some good time with you
You can give me your number
When it's all over I'll let you know

Hang on to the good days
I can lean on my friends
They help me going through hard times

But I'm feeding the enemy
I'm in league with the foe
Blame me for what's happening
I can try, I can try, I can try...

No one knows the hard times I went through
If happiness came I miss the call
The stormy days ain't over
I've tried and lost know I think that I pay the cost

Now I've watched all my castles fall
They were made of dust, after all
Someday all this mess will make me laugh
I can't wait, I can't wait, I can't wait...

If I ever feel better
Remind me to spend some good time with you
You can give me your number
When it's all over I'll let you know

If I ever feel better
Remind me to spend some good time with you
You can give me your number
When it's all over I'll let you know

It's like somebody took my place
I ain't even playing my own game
The rules have changed well I didn't know
There are things in my life I can't control

I feel the chaos around me
A thing I don't try to deny
I'd better learn to accept that
There's a part of my life that will go away

Dark is the night, cold is the ground
In the circular solitude of my heart
As one who strives a hill to climb
I am sure I'll come through I don't know how

They say an end can be a start
Feels like I've been buried yet I'm still alive
I'm losing my balance on the tight rope
Tell me please, tell me please, tell me please...

If I ever feel better
Remind me to spend some good time with you
You can give me your number
When it's all over I'll let you know

If I ever feel better
Remind me to spend some good time with you
You can give me your number
When it's all over I'll let you know

If I ever feel better
Remind me to spend some good time with you
You can give me your number
When it's all over I'll let you know

Pretty much the song of my life right now ;^)

Tuesday, April 10, 2012

#HAWMC - What would I tell my 16-year-old self?

Knowing what you know now, what would the older, wiser, Health Activist in you say to 16-year-old you? Would it be words of advice? Comfort? Truth? Would you warn of disease prevention and the importance of health? Or maybe there is someone else if your life you would like to send a message to.

This post was inspired by the “Dear 16-year-old Me” YouTube campaign video by The David Cornfield Melanoma Fund Not all diseases and conditions have warning signs nor are all preventable. But we all have wisdom to share about life, relationships and health. What is your message?]

Dear sixteen-year-old me:

I am you, all grown up. We made it! We survived... You're gonna make it through just fine. You're going to have the insights you need, when you need them. It may not feel like it at the time, but hang in there. You've got the right stuff. Believe in you. Your liabilities can be your strengths, depending on the situation. You won't be successful at everything you try, but your failures are just as important. When a door is closed in your face, it will make you seek out new opportunities---things you wouldn't have found otherwise. You'll surprise yourself, in good and bad ways. But we love who we are, scars and all.

Pay off your credit cards. Pay off your student loans as quickly as possible. Save as much money as you can. (Follow your gut for investing. Don't listen to anyone else.) You're wiser than you give yourself credit for.

Take care of your teeth! Even though there's great technology out there, that technology costs money. It's just easier to keep the ones you have. Get a different flavored toothpaste from your dentist.

You're not always going to make the right choices, but life isn't about "getting things right." However, you're correct in your assessment; you didn't deserve to be treated like that. They can take responsibility for their actions. You'll forget that at times, but it won't mes you up too bad. Look at yourself from outside yourself. You're not as ugly as you think you are.

Don't let people talk you out of listening to yourself. Don't listen to their reasons. YOU are the one who has to live with the consequences, not them. Be true to yourself, as you would want someone to be true to you. You'll make it through well enough. I'm here, right?

You're going to get very sick starting at age 27. It's not your fault. There's nothing you could have done to prevent it. There's nothing you can do to stop it. You're going to go through hell like you have never imagined, at pain levels you've never imagined. There's no way we're going to be able to get around that. It's gonna happen. Keep searching and fighting for answers. That's what's going to pull you through. (You will finally be thankful for your stubborn streak.) In the meantime, there's no "Pain Contest." We don't have to prove how much we can take. Do us both a favor: if you're in pain, take the pills. Toughing it out is going to jack our nervous system in the long run.

Remember, you can do this.

I'll see ya when you get here.

Monday, April 9, 2012

#HAWMC - Keep Calm

I spent one of my "get out of blogging free" cards last night. I think I spent it wisely and fairly. So on to today's challenge! During WWII, the UK Ministry of Information created a series of posters to boost morale during the Blitz by passing on a message from King George VI. Keep Calm and Carry On was the third in a series of World War 2 posters drawn up. The original posters were white block text on a red background. The only image on the poster was the royal crown of George VI. Today's #HAWMC challenge is to make a Keep Calm poster.

When a moment overwhelms us, it's easy to feel small an inadequate. When simple tasks become complicated and burdensome, it's easy to feel incompetent and useless. All the little things gang up together... big things join the group on their own... Soon there's a whole mob of problems surrounding us and it's smack-down time. Then there are those days where there are no choices, it's do what our body demands (which usually means being stuck in the bed or bathroom all day). Oh, those days can be brutal. What do we do when everything, including our own bodies, are conspiring against us?

Whatever the "this" is that we're going through, we are a human beings. We have memories and hopes and dreams and experiences that all add up to so much more that what's going on right now. Sure, what's going on right now might be HUGE, but that doesn't change the fact that this moment is just a moment, and it will pass. The next moment might not be any better, but the fact still remains: our life experience is bigger than right now. If we can get through right now, we can get back to doing more of what we want. A year from now, the details will have faded so much that we might not even be able to recall what went on entirely. Life goes on... You go on. Therefore, you must be bigger. We can take comfort in the fact we're bigger than this. We can keep calm and carry on.

Saturday, April 7, 2012

#HAWMC - Writer's choice! - Seattle trip update

I met with my new/old neuroendocrinologist, Dr. Broyles, yesterday in her downtown office. New, because I'm establishing care with her as a new patient. Old, because I was her patient from 2005 to 2008. It was wonderful. She even reminded me that one of my MRIs had shown inflammation in my pituitary stalk, and that this was further evidence of my diagnosis of Autoimmune Hypophysitis (lymphocytic hypophysitis). She hadn't heard of the studies about the cure that I was talking about, but she was excited and was going to read up on it. She also had a drug she was working with, that they don't even have studies out for yet! This trip was well worth it!

She took one look at my results from Colorado University, and was appalled: "And they tried to tell you this was a normal response?" She even had a follow up question: "Do you know what the strength of the injection was? Were they using..." and then it turned into scientific jargon I don't remember. But Colorado University didn't even mention there were two possible injection types. You'd think if they wanted to prove all my previous doctors were quacks, they'd at least cover their behinds. I'm going to have a long conversation with their hospital administration when I get home.

So the plan is, she's going to look over the studies, pull up all my old information (some of which is in archive) and give my case a good, thorough looking-at. She's going to contact the folks who ran the studies to see what levels of the medications they used, and see if it's a protocol we want to try. We both know that the protocol is really risky---we'd basically be pushing my immune system as close to off as we can get it for 16 weeks. That's a big deal. It will be like when cancer patients can't be around anyone so they don't catch accidently catch a cold and die. I will have to be super, super careful. And high-dose steroids means around 100mg/day. YUCK! I will be starving all the time, my skin will hate me, and oh, my poor emotions! It will be hell.

But if the studies hold out... if this shows that it really can reset my body and eliminate all traces of the disease... Sixteen weeks is nothing. It takes forty weeks to make a baby. I will do what needs to be done. She took a bit of blood to see where my renin levels are at, check my thyroid and other basic things. Things move forward from here.

Oh! So exciting!!!

[Other posts on my Seattle Trip]

[The back-story in chronological order:]
Trying to get an appointment in Denver
My discovery of the paper on the possible cure
Got an appointment!
CU Neuroendocrinologist not looking so good
Looking worse now...
And still worse...
But wait? A glimmer of hope?
Nope... no such luck...
Maybe if I switch doctors in-house? No....

#HAWMC - Health Haikus

Today's blogging assignment is a twist: Haiku. Let’s switch up the writing style a bit for today’s posts! As you probably know, a haiku is a “miniature Japanese poem consisting of 17 syllables* – five syllables* in first line, seven in second, and five in the last. No rhyme or meter scheme is employed when writing haiku. The aim of the haiku is to create something greater than the sum of the parts.” Traditionally, haiku poems were written about nature and aim to capture the essence of the aspect of nature that is being described.

Think up a new you,
Perseverance to the end,
Laugh to keep living.


How I remember
Trumps living in the moment.
Find the good in this


Aspen roots entwined;
A super-organism.
Out of the many: one.
Out of the roots of health blogs,
Writes one voice: "Love, and endure."

Whew! The five-seven-five isn't so bad, but trying to distill a moment into its essence... that's a bit trickier. However, if we really want to step up the difficulty, we can go to the traditional Japanese count of a haiku. In a toast to my Seattle trip, I'm going to educate a bit on the haiku. The 5-7-5 meter is correct. But it's not *syllables. It's what the Japanese call "on". It's this crazy counting system that took this blog post down to the wire... and I still only got close. Didn't manage the
Although the word "on" is often translated as "syllable", in fact one on is counted for a short syllable, an additional one for an elongated vowel, diphthong, or doubled consonant, and one more for an "n" at the end of a syllable. Thus, the word "haibun", though counted as two syllables in English, is counted as four on in Japanese (ha-i-bu-n); and the word "on" itself, which English-speakers would view as a single syllable, comprises two on: the short vowel o and the moraic nasal n. This is illustrated by the Issa haiku below, which contains 17 on but only 15 syllables. In addition, some sounds, such as "kyo" (きょ) can be perceived as two syllables in English but is a single on in Japanese.
This one has 17 "on" (if I'm counting right), and I think the structure is 5-7-5. I actually composed it last Sunday coming down from the mountains, when I spotted this scene.

Bristlecone pine tree
Grows out from a boulder
Life always wins

Someday, I'll have to paint this, too. Until then, I'm on time, barely! If there are any haiku experts in the house, let me know if I've done it right for the Japanese style? ^_^;; Thanks!

Thursday, April 5, 2012

#HAWMC - Flickr inspired post - Perspective

For today's #HAWMC challenge, I am to take the first picture I see on, and use that to inspire a health-related blog post. Below is the Cuban Tree Frog, at first glance, a cute bugger(pun intended), but according to Wikipedia, and invasive species that in some places is being called for extermination on sight. Yie... Not so cute anymore. It's all about perspective... for bad or for good. It's that way with my health, too.

How you doin'?

When I get angry or frustrated with something that I can't change, I'll close my eyes (usually with clinched fists too) and I'll ask myself, "Okay... what is the good in this? Where is the good in this? Find it." And I force myself to see some way in which I could turn around my thinking---see how this terrible situation could be good. It's not an easy exercise. Sometimes it will take me days to come up with an answer. Sometimes longer than that. "What else have I got? What's left?" are questions that can sometimes help me think. "How could this bee a good thing?" is straight and to the point. I try and look at whatever it is, what ever awful thing that's going on in my life that I can't control, and I try to see it as a gain instead of a loss.

The second I'm able to figure that out, my heart hurts less. The world doesn't seem so dark. I can usually spot some opportunity I couldn't see before. Pretty soon, my shoulders relax. And the more I think about my new perspective, the more I'm able to laugh. Mostly, I laugh at myself (there's always something!), but sometimes something funny just happens, and I'm able to laugh. That may not sound like a big deal to a lot of people, but for a lot of us, it sadly is a big deal. Being able to laugh from actual joy, and not just, "I am going to laugh to show that I understand this is funny/clever," is pretty amazing. Being able to find that place after being frustrated and screaming at the heavens is HUGE. Laughter heals the pain in our souls.

Once I can laugh again (and maybe take a nap, because screaming at the heavens is tiring), I have the strength to go back to fight the good fight. The world isn't such an awful place when I can find joy in it. When I'm able to stop looking at the glass as half-full or half-empty, and say instead, "Thanks! Just what I needed---I was feeling a little thirsty..." then it doesn't matter either way. I'm going to take advantage of the situation, that glass will be empty in about 30 seconds, and my thirst will be quenched. Or in other words, who cares about measuring this much, or that little? Does it serve a purpose? Find the purpose, and make it useful to you.

I take my pain, mistakes, and shortcomings---all the adventures of my life---and I try to help other people. If I can make just one person's day better with my words, my job is done. (That's always why I'm so absolutely thrilled when a post takes off. After the first person, the rest are all bonus points! Although it's always flattering to know someone likes what I have to say, my main focus is lessening the pain of someone else. If I can help someone else suffer less... if they don't have to suffer like I suffered, then I've helped... then my pain wasn't just for the sake of pain. It's could be turned into something useful for someone else.

It's all a matter of perspective.

Wednesday, April 4, 2012

#HAWMC - I blog about my health because...

I blog about my health because I have to. I have to for myself, for other patients like me, for doctors, for complete strangers I've never met. I have to because we don't like talking about this stuff. I blog about my health because what I'm going through is invisible, and it affects every aspect of my life, including who I am able to be. I blog about my health because I feel like I'm in the closet. People don't want to know, and I get judged and mistreated because of my disease. But most of all I blog because: "If you think you can’t make a difference, you are wrong. If you think you are too old or too young to make change happen, you are wrong. If you think that somebody else will do it first, you are wrong."

No one likes a loser. Either you're on the side of health that's bigger - faster - stronger and all about being a hero, or you're on the side of health that's a nightmare. It's difficult to talk about nightmares. But I think we can change the conversation. I think that if we're able to look at health problems not as a sign of weakness, but as a challenge that the Universe has given to us, we can start to see people with chronic illnesses as heroes.

It's my intent to help people get a positive perspective on chronic illness. We need to change our ideas of what it means to be sick. It's a scary experience, because it's times like this that we realize just how little in control we are. Everyone knows what it's like to have the stomach flu, and have your only though be reaching the toilet before something terribly embarrassing happens. Sickness can through us back into the helplessness of infancy, even though we're full grown adults. That's why healthy people don't like talking about chronic illness. Because they have no idea that perserverence is possible!

As a person with a chronic illness, I can tell you from my story and others, just the amazing amount of strength we have. We take it for granted, of course. We're so busy trying to keep up with other folk, that we see ourselves as lacking in strength all the time. But I'll admit, I've been told more than once, "I have no idea how you handle all this." I didn't use to honor that statement as much as I should. I was so frustrated with the limitations of my disease, that I didn't see how amazing I had become in response to those limitations.

I'll give you an example, not dealing with chronic illness.

Joss Whedon is an amazing movie producer. He did the screenplay for Toy Story. But his best films are the films that had the most restrictions. Either there wasn't enough money, or there wasn't enough time, or something was going terribly wrong. Whenever that happened, he made amazing work. The movie Serenity is probably my favorite example. (Watch the behind-the-scenes... they're hysterical and informative.) The movie came from the TV show that was canceled, until a grass-roots fan campaign got enough support that they were able to finish the series in a major motion picture. That's never happened before. And it came out of struggle.

In my Biography, I share a quote from Elizabeth Kubler Ross: "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen." I want to help teach people with chronic illness that they are beautiful. You are beautiful because you struggle. You are beautiful because you fight. You are beautiful because you pick yourself up again after you've been devastated... One. More. Time.

You do not need to be ashamed of this.

I blog because this message needs to get out there and be heard by everyone. I blog because people with chronic illnesses should all hold their heads up high. This is hard! Our struggles are valiant---they make us heroes. We don't have to prove ourselves on some testing ground. We're already there! And we prove ourselves each day, whether or not we get out of bed. Because the battlefield is within us, and our bodies are at war. We don't have to hide in the shadows. We can be proud of who we are.

Tuesday, April 3, 2012

#HAWMC - Superpower day

For today's #HAWMC writing prompt, I am supposed to choose a superpower and how I would use it. With the amount of nervousness I'm feeling about my trip to Seattle tomorrow, I would choose teleportation! Wouldn't it be wonderful to be able to go somewhere just by wishing? Instant travel so that there's not all this hassle of packing, getting a ride to the airport, dealing with the flight, on and on... It's an annoying activity for most healthy people. But for chronically ill people, it's even worse! If I leave something important at home, that can spell disaster. The travel itself is also physically exhausting and pain-causing. Teleportation would make all that agony go away.

For those of you just tuning in, I am traveling tomorrow to see my old endocrinologist in Seattle. She was recently appointed to head of neuroendocrinology at Swedish Hospital there. A neuroendocrinologist is an endocrinologist who specializes in disorders of the pituitary gland. And I happen to have a pituitary problem! Autoimmune hypophysitis, to be exact. She's one of the doctors who was present when I got that diagnosis. There's no need for me to worry she won't believe me (unlike my local neuroendocrinologist). I am meeting with her to establish myself as a patient again, and then make a plan get the cure.

Yes, it's an experimental treatment. But it has to be: there aren't enough people with my disease to even run a proper study! I'm hoping she'll be able to contact the authors of the paper detailing the cure, find out specifically what they did, and then tell that to my doctor here in Denver so I can go through the treatment. From what I can understand of the paper, it looks like a 16 week treatment, and then the pituitary disease should be gone.

That won't leave me 100% cured, unfortunately. There's still the damage to my nervous system, that's not going away, and will need continued management. I'll of course still have the scars from my surgeries. I'll probably still get migraines (though there is hope these could be lessened or even eliminated). But the disease that can kill me, the disease that we think is the original source of all these issues, will be gone. We will be able to stop much of the deterioration of my body, and get me off a lot of medication. And I will be serving as a guide to my Unicorn Sister.

I have done all the planning I can. Everything is packed except the last vital things. I'm going to try and make a post for #HAWMC tomorrow before I leave, then the computer gets packed up. I have my paperwork in order. My reservations are set. Since teleportation isn't possible, I'll just have to settle for an airplane and rental car for now.