Addicted to blogs...Links from the medically mystifying to the artfully interesting!

Well, lately I've been obsessed. Obsessed with blogs. I love them. It started simple, I was seeking to understand some of what my friends and I have been dealing with medically....and I know a lot of people dealing with a range of interesting and unique syndromes, quirks, and debilitating diseases as well as a couple talented bloggers to boot. In an effort to gather info and get a glimpse into their lives, I ran across blogs by people going through the same things. OMGD! Why did it take this long for me to see how frickin' cool these things are.

I have to stop here and make a confession....  As a kid, I was obsessed with this book called "Harriet the Spy". Basically this little girl fancies herself a spy in her neighborhood. Every day she would follow her "route" in which she found creative ways to peek into people's windows or break into their houses to just watch their everyday activities... the boring details and the interesting quirks. Oh, how I wanted to do that (Not that I didn't try...but that's another story!). I wanted to be the proverbial fly on the wall so that I could look into other's worlds and watch them. Nothing kinky, mind you (shame on you!)... I just love to watch people. I love people. I mean it. LOVE THEM! I love the richness of expression in peoples faces... I love the stories they tell in their eyes when they don't know someone's looking. People are, in a word, fascinating.


So now back to blogs.... it's the window I've always dreamed about! And it's LEGAL! So now I'm obsessed.
And it suddenly occurred to me that other people might like the stories I've been reading because some of these blogs are just that awesome...

So here are a few links....

First is an extremely funny blog by a woman close to my heart....her family's struggles and laughs with autism and cystic fibrosis. A sweet dose of truth

Second is a woman who survived an airplane crash which burned 80% of her body! She had this blog before and after the crash.... she has posts dating back to 05. If you have the gumption, use google reader and read the archives...it's a fascinating glimpse into her life and eventual struggles. She also is a great cook and has another blog for food recipies...vegetarian. The link is on her site.
www.nieniedialogues.com

A hard read but well worth reading is a blog by a mom who has a son suffering from EB (Epidermolysis Bullosa: a condition where the skin blisters at the littlest things and sloughs off). Like I said, a hard read but a very interesting one. http://randycourtneytripproth.blogspot.com

I also found some wonderful blogs (too many links to add when I can just add one) on a site called Top Registered Nurse Blogs | Registered Nurse. These blogs are categorized by illness. I found some wonderful ones by mothers and people with Cystic Fibrosis, EB, Tourette's, etc...

Another wonderful source for blogs was in Top 50 Blogs in: special needs - NetworkedBlogs.com where I found an endless supply of endearing and honest looks into several special needs families.  A couple of my favs were:
 Autismville
 A life lived in wonder
 Life, Unscripted

Ok so that's all for now but my next post will be artistic blog links. Lots of them. I told you....obsessed.

As if the disease wasn't problem enough...

As some of you know... it's been a rough past few months for me. I am in the process of being diagnosed with a chronic pain condition. It's either Fibromyalgia, Chronic Lyme disease, or something in that vein. It's a diagnosis that has been a decade in the making...

It started slow... and until my pregnancy, it had been a gradual decline. First a blurry right eye, then a temporary flare of weakness in my right arm. Then, after a back injury, pain. At first it was easy to attribute to my accident ( a work thing that laid me up for awhile). I thought it was just me being a wuss. Eventually it became chronic back pain that I lived with... silently sapping my energy at times but at least ignorable.

Then the other symptoms starting piling on. Little by little weird sensations were cutting into my daily life.
And the pain increased. And then depression. Finally I went to the doctor's again when I had insurance. Then it got scary... they thought I had a brain tumor.... then MS.... then there was talk of Fibromyalgia.... then... no insurance....

Then we moved.

By the time I got to Seattle, 4 years ago, I was frantically searching the net for help. Then it subsided for awhile.

Enter pregnancy. Holy shit.

For those of you that have given birth....this pain...it's akin to permanent labor at times. It's everywhere now... my neck, back, hips, knees, arms, legs and wrists. And the symptoms list grows...

• Right eye blurriness (like looking through wavy glass, bluer, double vision on text)
  
• Pain in the following (Intermittently stabbing, burning, and like a toothache):

1. Eye
2. Headaches
3. Back of head
4. Neck & Shoulders
5. Upper, Lower and Mid Back
6. Upper Torso above breasts
7. Top of lower back left and right rib cage
8. Hips (they also stiff and lock at times)
9. Pelvis (on tail bone and in sciatica)
10. Legs (tight like pulled muscles to sharp like small animal bites)
11. Knees (outside, inside, and on the bottom front)
12. Carpal Tunnel-Left and Right (mostly right) shoulder, arm, wrist 
13. Bone pain... this dull horrible sensation like my bones are all rubbing together 

• Fatigue (not tired... like fall over, can't get out of bed fatigue) 
• Insomnia 
• Mental confusion and memory loss 
• Feeling of being in a mental fog 
• Headaches
• Left ear slightly diminished
• Tingling in face(like tv static)
• Glands in neck, legs, armpit and jawline flare for no particular reason.
• Low grade fever 
• Hot and cold flares (hot like I turn on the air conditioner in December, cold in extremities, and bone cold)
• Lately nausea is new but I can't tell if that's just a reaction to the pain.
• Depression 
• Anxiety... or more like a feeling of uncomfortable energy in my body 
• Internal shaking feeling
• Weird heart feelings...(like I can't stop noticing my heart (feels funny) which also contributes to the insomnia)
• Spasticity in legs
• Stiffness in muscle 
• Restless leg syndrome 
• Sensitivity to light, sound, and touch 
• Dizziness/Lightheadedness
• Itching (mostly head when it strikes but it can also be feet and all over... like bugs under my skin) 
• Right arm weakness ( no fine motor movements/ can't feed myself or write) 
• Weakness in legs (have to work to remind my body how to walk)

And as if this isn't enough.... the doctor's still look at me funny when I want painkillers. It's enough to make me want to scream. If they could spend one day in my body, I bet they would never question me again. I know they see tons of people trolling for drugs... I know they want to make sure I don't become an addict... but until they have an alternative for me.... until they can find out what the fuck is actually wrong with me.... just let me have some relief. It's bad enough I have to live with this, looking normal and lazy, but feeling awful. It's bad enough that I have to stand by and watch my family have fun without me cause I can't run around with the pain. It's bad enough that I'm gaining weight cause it hurts too much to exercise. It's bad enough that I can barely work or paint or do anything I love without pain and fatigue as my constant companion. But to have even the medical community being so insensitive...it's just too much. 

They seem overwhelmed and irritated at the large symptom list, as if I'm just being over sensitive. They still want to focus on one or two of the problems instead of seeing it as a whole. It's enough to make me want to freak out. 

Isn't it bad enough to just be me right now?

Giving up my vices... the hell of rehab.

Some people snort coke. Have cute names for it too.. snow, blow....
Some people drink themselves silly. They're fun at parties.
Some people find themselves addicted to sex, fetishes, video games...

They have cool stories of their road to recovery. They wear their addictions like badges of honor...war heroes in their battles of self destruction.

I'm not that cool. I'm a worrier and a guilt hoarder. They don't have a group for that.

So I started my own 12 steps....ok.. it's just one right now but it's a start. This month, September 2010, I am not allowed to wallow in worry or doubt. Not at all. Cold turkey. I jokingly told my husband that I thought it was kind of like an addiction. I jokingly said it might be hard to not be negative.

 Two days in... it's not a joke. I am an addict. It's amazing how much time I devote to it. It's become second nature to me... more than breathing. If I'm not worrying about something, I'm feeling guilty about not worrying about it. It's a crutch and a debilitating one at that. I just never knew how much of my life has become devoted to it...till I made a point to acknowledge it.  I bet that's what's eating up my motivation and energy.

So now it's rehab for me. I am determined to kick the habit. But how do you kick the habit when the habit is in your head? You can choose to not buy a drug or alcohol. You can choose to stay away from sex...especially when you need someone else to do it. But this is all me. It's like biting my nails. The worry is readily available night and day and attached to me like cancer.

And it's a clever little shit too...it seems innocuous at first... oh, did I remember to do this?...oh, shit! Did I remember this other thing.... no?... so why did I forget? What's wrong with me?  What can I do to not forget again? What if I forget this other thing? Doesn't that make me a bad wife, mother, daughter etc...?

So it's got to stop.

And I think it's a perfect blog thing. I'll bet I'm not the only one. Anyone want to join me? One month sans worries... sans guilt? Think you can do it? I wonder...

Let me know how that works for you.

Maybe we'll have to start a group.

A world trapped in time... North Korea

   North Korea. I'd heard about it in the news... the insane leader guy with the nerdy hair and dark glasses threatening to bomb us... The scenes on the net made him seem comical, too ridiculous to be serious. Too outrageous to be much of a villain.
   But I have to admit, when someone threatens nuclear war, they usually get my attention. I'm a cold war kid. I remember the bomb drills in elementary school. But nervous or not, I really didn't have a clue what was going on over there.
  I doubt very many people do.
   Recently I went through yet another documentary phase. I watch everything I can get my hands on till reality gets a bit too much for me. It was then that I stumbled on "State of Mind"(available on Netflix for streaming). Centered around a budding young gymnast, it chronicles her preparations for an event known in North Korea as the "Mass Games". This is an event unlike anything you have ever seen in the rest of the world. The closest thing to it would be the opening ceremonies for the Bejing Olympics... on crack... with a real hostile twist.  It consists of hundreds of thousands of people forming a unified dance, gymnastic, and military spectacle. There are no solos... only mass discipline. There are 80 performances over 4 months and then training begins immediately for the next one. It is a literal representation of the suppression of the individual. The very essence of their "Communist" society.

   I put that in quotes because no one has ever had a Communist society. Not the Soviet Union, not China.. nowhere.     There have only been Fascist Dictatorships with a bit of Socialist philosophy to help mask the bad taste it leaves in your mouth. That is why it's such a bad word in the US. Because people don't know what the word means. What the true concept is. But I digress.

   Anyway... watching this documentary, I was suddenly aware that this was not archival footage. This was modern day. And that scared the shit out of me. It is shot in the capitol of Pyongyang. And that capitol has all the trappings of an Orwellian nightmare. It is prewar Berlin circa 1945 mixed with a bit of the decades up to the 70's until time abruptly stopped. A terrifying mix of depression and oppression. It is a desolate place, filled with crumbling buildings, massively imposing architecture and statuary, and scarcely a person. There are 8 lane roads with no cars but people still directing traffic. There are subways that have chandeliers that rival Gone with the Wind but not enough electricity to run them reliably. And unbelievably, it is the showcase of this disturbing nation ; a vision of utopia from the mind of their twisted leader.

   The reality is that it's a country in ruin. Estimates of deaths due to starvation range from one to three million since the 90's due to ill managed funds and natural disasters. There are only a few hours of electricity and running water a day even in the cities. There is no proper health care and supplies. The economy is essentially dead.
  One might wonder how the government is still able to garner control but in reality it is relatively easy to understand. It is a cut off world with absolute autonomy. There are no private computers, no television that isn't government run, and no cell phones allowed. There are hardly any land line phones either. Each house is equipped with one radio with volume but no off button that features only state announcements and propaganda. For fifty years, they have heard and seen only what their leader deems appropriate... lofty propaganda reports of government successes and reminders to restrict individuality at any cost. The fear is palpable as neighbors turn each other in at the first hint of dissent. And for those who dare to voice their objections...there are concentration/labor camps. But North Korea takes it a step further than arresting the insubordinate...  their entire extended family, three generations in all, are thrown into hard labor for life...no questions asked. So people stay quiet and passive....and speak only to revere their "Great Leader".

  A rival to Hitler for the most insane dictator, this so-called "Great Leader", Kim Jong Il was born into his destiny. In his country, he is considered the son of god. The god being his deceased father, Kim Il Sung... and hold on to your seats, people...this dead man is still considered the president! I kid you not. I once heard a comedian suggest we elect a dead man as president to scare Al Queada... I mean who wants to mess with a country insane enough to follow a dead guy? Well, the North Koreans have done it and truth be told... I am scared. We are essentially talking about an entire country made up of a very hostile cult.

 And when I mean hostile... I mean toward the United States. They hate, loathe, despise...well, you get it...Americans. A grudge of 50 years, stemming from our breaking up their country (with the help of China and the Soviet Union). Now I won't say we don't deserve it....Our government has a long track record for being bastards to a great deal of the world. But there is hate... and then there is insanity. This loathing is akin to what the Nazi's felt toward the Jews. There are posters... enormous propaganda posters lining the streets with images of extreme violence toward  U.S. soldiers, toward the White House... toward us. They blame us for everything that has gone wrong in their country. Their failing electricity (we offered help but withdrew aid when Kim Jong Il wouldn't halt his nuclear weapons program), their famine (we actually did help them with that but the people don't know), and their failing version of communism.

  It is a literal representation of 1984. Total subservience to a government run on propaganda and fear. And it is happening now...today. It is a situation that needs to be dealt with but I doubt a war would solve anything. It would probably only act to unify the country further as it would fulfill the prophesies and rantings of Kim Jong Il. Instead I think we would have to be subversive. Find a way to educate the people. Help them see the hypocrisy that is their government. For a man who denounces importation, individual pleasure, and inequality, it would be interesting if the people knew he  is one of the biggest importers of Hennessey Cognac, has a fleet of imported Limousines, and lives large like the twisted dictator he is. Or hopefully the people already know and slowly the dissent will flourish and we will be ready to offer our assistance to them on fallen borders. I really hope so.
  But for now it's a society trapped in time. Trapped in fear. Trapped.

Additional Links for people interested..

Vice does a tour of North Korea
http://www.vbs.tv/newsroom/vice-guide-to-north-korea-1-of-14

National Geographic Documentary
http://www.youtube.com/watch?v=mxLBywKrTf4

There is a great book called "Nothing To Envy"
http://www.amazon.com/Nothing-Envy-Ordinary-Lives-North/dp/0385523904/ref=sr_1_1?s=books&ie=UTF8&qid=1281328854&sr=1-1

What if?

I find it interesting how life follows such interesting cycles. It always seems to change and yet upon closer inspection, it's always the same... just a different form. We are a herd species. We have been since the moment we graced this planet. You can almost imagine the small tribes that huddled together in caves and under trees hoping to gain safety in numbers against the endless predators and natural processes that keep earth's population balanced. We fed each other, groomed one another, and fought for dominance against one another... seeking to find our place in this world. Our alliance was our safety net against a hostile world that scared us.

It hasn't changed much. We still cling desperately to small tribes. First our family, then our friends, then to whatever groups make us feel wanted and safe. Religion, ethnicity, sexuality, gender, politics... these are all different names for the tribes we hold tight to. Hoping to find our place and find safety in numbers. We cling in fear against that which scares us, makes us uncomfortable. We define "us" as "not them" and circle the wagons against these perceived threats.

It's sad... for all the centuries upon this planet, all the advances and control that we've garnered over the "hostile" natural world...we seemed to have gained very little ground over our fears. We still need to draw lines and define the enemies. It's sad to see so much wasted energy. If we even took half the time we devote to judging, controlling, and hating one another and spent it trying to understand one another.... this world would be such a different place. We would learn to see the similarities... the "larger tribe". We would see that all people share the same life... the same needs. The need to love, to be loved. The need to have a safe and stable home. The need to eat nourishing foods, drink clean water, and be healthy enough to live long productive lives. The need to feel like there is a place for them in this world. This is a universal. A constant. From the gay couple down the street, to the Muslim family across the world. From the Republican senator to the homeless man who begs you for your change. The man and the woman. This is your tribe. A world tribe.

It doesn't stop at the basic needs either. We are an emotional bunch as well. We all feel sad when we are rejected. We all feel hate when we are scared. We all want to lash out when we are angry.  We all want to be wanted and respected. One can even find it in "evil" men. Gang members, drug dealers, murderers...all acting out of fear and the need to feel in control. All of them seeking to find their place. Their role. And as much as we don't want to see it...they, just like us. are loved by someone. There is love in all the dark places and dirty corners... and the undeniable constants remain.

And it even extends further than that... it extends to the nature around you. Their needs are the same... from the lowly chicken to the majestic eagle...from the cow to the lion. All one tribe. One binding balance.

The questions I ask tonight are my constant as well...Why do we spend so much time looking for the differences? Why settle for the primitive hostility and fear of our ancient past? Why not spend that time learning about the people we fear... find ourselves in them if just for a moment? For through understanding what scares us, we learn about ourselves. We learn not to fear. We become empowered, enlightened... gaining new respect and deeper love for the larger tribe we all belong to. Ah... maybe someday.

What if matter simply isn’t necessary to existence?

This is the beginning of the thought process that started the need for this blog. I was relaying yet another complicated train of thought to my patient, captive husband last night when he suggested that other people might like to be privy to my madness. In truth, I think he’s hoping that I might exhaust myself in blogged diatribes so that for once I might get some sleep. I am soooo much more pleasant when I sleep.

So what the hell do I mean by matter being not necessary? It’s a complex ride to this conclusion but if you can bear with me, I promise it will make some semblance of sense in the end.
It occurred to me last night, as I fought my blurry, tired eyes, that I have always been aware of static in my vision. If you have no idea what I mean, try looking at a white wall for a few seconds and relax your eyes. Try and be aware of the tiny dancing pixel-like dots that seem to appear and disappear in your vision. You can also close your eyes and press your hands gently on your closed eyelids. If I’m right, complicated static and fractal patterns appear. With that in mind, coupled with a history of migraines, I started thinking of my vision in relation to LCD screens with my brain acting as the computer telling which pixels to display what colors.

Wait just a second… wtf? Where do the migraines come in? 
Migraines tend to act like a shit storm in the brain. They activate all different parts at inappropriate times causing nausea, sensitivity, pain, and in some lucky individuals, me, they trigger visual and spatial hallucinations. I often see oil slick-like dots in my vision that eventually merge to form a kind of blindness that is a mesh of color with no depth perception. Often times during the attack, I will even experience “Alice in Wonderland” syndrome where I alternately feel large and small in relation to things around me. This is similar to the distortions a stroke victim might experience. (And you non-migraine people thought it was just a headache!)

Now the next stop on my train of thought…. Physics.
Physics has gotten exciting as of late. It’s not your high school physics anymore. It’s more like a sci-fi movie these days. Every day scientists are breaking down the old beliefs about time and space. For instance, did you know that science has determined that it’s not only possible that other dimensions exist…it’s probable? Or that science has made teleportation actually feasible in a manner of speaking? Or even that matter may be made up of vibrating “strings” at the subatomic level? The latter revelation makes up the laymen’s version of “String Theory” and is actually the next part of my theoretical journey.

So why do we need strings? What if matter is simply energy vibrating at different frequencies that our brain perceives as solid? We rely entirely on our brains to understand the nature of our reality so what’s to say that there’s more than that? What if we aren’t even moving, but like an animation on an LCD screen , we appear to move because our brains evolved to process the perceived motion?

What is matter anyway?
Just another way to explain the difference between the space between objects, another way to describe the nature of what we perceive in individual objects? In truth, it’s been wrongly understood by the general population even today. Most people look at a table and see a solid, impenetrable object. But it’s not solid. It’s actually made up of mostly space. The space between subatomic particles. Huge spanning distances relating only to the kind of math you see in to planetary distances. In fact, the table only appears solid due to the very strong energetic bonds between these particles. But what if the particles aren’t solid? What if at the smallest level, they are merely energy? Simply energy.

So there’s the full journey. And that, my dear, is what I think about at 1 o’clock in the morning. Actually, that’s the kind of stuff I think about all the time, hence my hubby’s need for me to blog. That way I can make other people’s brains hurt besides his.