For some odd reason, my life has been filled with people afflicted with this horrendous mental condition.  It really is beyond comprehension to most of us how scary this actually is for the person suffering and everyone around them.  For most, it ends up destroying lives (not only their own) and their soul.  They become someone completely different all together, someone they don't even know.  

Bi-Polar suffers are not dumb.  Normally they have high IQ's.  They can be charismatic, successful, charming and fun.  In sales, and in say the stock broker professions, being Bi-Polar can even give you an edge when you are on a high.  That extra bit of energy.  Its one of the reasons that it is really difficult to "spot" someone with BiPolar unless you know what to look for.  

That being said, how does a regular person see the signs of a friend or a loved one having BiPolar disorder?  What makes them stand out from people who simply get depressed now and then?  What do you do if you think your friend, family member or loved one "could" have this horrible disease and chemical imbalance of the mind?

Does the person lie about things that aren't important to make themselves look better?  Do they feel the need to fill their ego with "things" and people and stimulation all of the time?  Are they down one minute, and up the next having a "Jekyl and Hyde" type of personality? Do they seem compulsive with needing attention from friends or the opposite sex?  Are they addicted to alcohol, or drugs, or partying, or behaviors that are inappropriate?  Do they have issues in every single relationship they have with them always being the "victim" in the situation when describing it to anyone else?  Are they jealous or possessive?  Do they control or manipulate their partner?  Do they hold their family (children) hostage against family if their demands are not met? Do they have bouts of extreme insomnia where they are up all night and sleep all day, never getting anything done?  Or oppositely do they all of a sudden become super motivated and tackle huge tasks with little sleep and a huge adrenaline rush?

First of all, ignoring it will not make it go away, no matter how much you want it to.  Letting the little things slide only hurts you, and that person, and everyone around you.  BiPolar doesn't get better on its own.  It gets worse.  Way worse.  The person spirals down into the lowest of the low without explanation, turning to all of their addictions, fetishes, habits, and stimulations to get themselves through the day.  For some its alcohol and drugs, others its gambling, or sex/porn, mostly though its a combination of all of them.  When one stops working, they move to the other.  Its a vicious cycle.

Here is the thing, do you remember my post a few days ago about Girl you cannot fix that man?  Well it applies to women too.  And with BiPolar, you are on a uphill battle all of the way.  

One of the biggest problems with BiPolar is that when the person is at a stable point, they are loving, rational, great people.  They promise they will never ever get out of control again.  But, unless they get the help they need, and rigorously stick to the program you are in for one hell of a roller-coaster ride.  Their inner voice is your enemy in keeping them on track.  Everything starts to stabilize, that inner voice starts telling them that they no longer need the medications, that they are cured.  They start testing their boundaries over and over again, until they are right back where they started.  That is the disease.  The disease lies to them.  The person doesn't want to do bad things.  They don't set out to break their word or be bad.  When they look you in they eye and say never again, they truly mean it from their hearts.  The problem is, that their disease says otherwise.

Unfortunately these people need to be regarded and treated as snakes.  You may choose to keep the snake in your life.  But they are still snakes and need to be treated as such.  Limiting their ability to do damage to your life and theirs is the best you can do.  Making sure that they keep consistent on their medication and food plan and keeping in constant touch with their therapists.  They are only snakes because they can't help themselves.  They aren't looking to be bad, or to do bad things.  Their disease is the culprit here.  But you still need to protect yourself as much as you can from its damage.

I have known many brave souls try this route and fail.  Why did they fail?  Was it because they didn't love the person with BiPolar enough?  Did they run at the first sign of trouble? The people I know gave it every effort and them some.  They risked their own lives and the lives of their children to save the person they loved.   The answer is that the person with BiPolar didn't love themselves enough to reach out and get the help they needed.  They refused it, allowing themselves to go into the black hole and trying to drag their families in with them.  At that point it becomes self preservation for themselves and their children and escape was needed before more damage was done to the next generation.  

Very few BiPolar people manage to get the help they need and stick with it.  Its so sad.  It is a constant thing that they deal with their entire lives.  One morning they wake up after years of being dormant and go on a huge spending binge or become a sexaholic or do other self-destructive things.  Each person is different how the disease manifests itself.  It could manifest itself in workaholism, or extreme sports, dare devil stunts (thrill seeking), needing constant change of scenery, or even something as simple as extreme weight loss and gains.  There is a spectrum of the disease to consider.

I hope that people learn to understand that BiPolar is a disease.  A true chemical imbalance of the brain and how it functions.  Its a cousin to OCD and shares many of the same characteristics.  The person themselves aren't bad to start out with, but if they go without help the end result will be bad.  

Maybe this will help someone out there in Cyberspace ... I hope so.

For more information on this terrible disease, do click on the following link:  http://en.wikipedia.org/wiki/Bipolar_disorder

disclaimer:  I am not a doctor, nor do I have any FORMAL medical training.  The information that I provide is from my years of study due to my own disease.  It is not intended to replace medical advice nor should you not seek medical advice.  Use this information in addition to the stuff the doctor tells you.

Dang them girls tagged me again.  Ok, since Im not really writing much and recycling old posts to keep you all entertained, here is my contribution to the Meme.

I’ve come to realize that my hair …..
will always have the "monkey look" in the morning.

I’ve come to realize that this weekend….
I will be seeing JAMES TAYLOR in concert  YAY ME!

I’ve come to realize that when I’m driving….
I love to sing along to my favorite CD

I’ve come to realize that I need…
to be less frugal when it comes to myself.

I’ve come to realize that I have lost…..
loved ones through no fault of my own.

I’ve come to realize that I hate it when…
people are ignorant and rude to each other about anything especially race, sex and religion.

I’ve come to realize that today is…
another beautiful day from God...

I’ve come to realize that money…
Is a good thing to have, but it doesn't have all of the answers either.

I’ve come to realize that certain people…
will never ever grow up and take responsibility for their lives and actions.

I’ve come to realize that I’ll always be…
sick in the body but healthy in the mind and soul.

I’ve come to realize that I have a crush on…
now that would be telling wouldn't it???

I’ve come to realize that my mom…
is going to live with us for as long as she lives.

I’ve come to realize that my cell phone is…
one of those things I have to have on me.

I’ve come to realize that when I woke up this morning…

I am again in horrible pain and can't get up.

I’ve come to realize that last night before I went to sleep…
I was in horrible pain and hoped that this cycle wont last too long.

I’ve come to realize that right now I am thinking about..
how tired and how much pain I am in right this moment.

I’ve come to realize that my dad…
he is an evil predator who to whom I wish nothing but a can of flea spray.

I’ve come to realize that my life…
Is focused towards helping others and making this world a better place to live in.

I’ve come to realize that tonight…
my mother is going to cook us dinner and that is a somewhat worrying thought.

I’ve come to realize that tomorrow …
the pain might not be so bad.

I’ve come to realize that I really want to…
someone who is remembered as good and kind in this world.

A website I love, and am a moderator on is But You Don't Look Sick. This wonderful website and forums is for people with chronic illnesses and their caregivers/family members, offering a wonderful, caring community of people who understand the frustrations of having a chronic illness (or multiple) and dealing with doctors and people who don't think you look sick or think you're too young to be sick, etc. Sunday, July 27 is the 5th anniversary of the site, and I took this photo in honor of it! One of the major cornerstones of BYDLS is The Spoon Theory, written by the site's founder Christine Miserandino (now Donato) to help explain to other people how chronic illnesses like lupus, fibromyalgia, etc. affect a person and what they can and can't do. So spoons are a big topic of conversation over there.

I have multiple chronic illnesses, and have had my fair share of adventures with doctors to get diagnoses, as well as having people tell me I don't look sick or I'm too young to be that sick. I'm better than I was a few years ago; I have a wonderful doctor who has helped me treatment-wise tremendously and a wonderful boyfriend who cares for and supports me in any way he can. However, that's no substitute for the fantastic men and women at BYDLS, who are some of the most caring, kind, understanding people I have ever had the pleasure of interacting with.

The Starfish Story

by Loren Eiseley (1907 - 1977)

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."

This story is a great metaphor for community service, evangelism, etc., and how we can change the world one life at a time.  Recently I've been mulling over my struggle with skin cancer.  Often times my battle seems like that beach full of starfish:  cancer cells by the hundreds.  To get rid of them all would take a miracle, and that is what I ask for often.  But in the meantime the battle can seem so futile.  Then I thought of how my treatments have "made a difference for that one."

Each time I have a cancerous lesion treated, victory has been won.  A difference has been made.   A miracle has occurred......one lesion, or sometimes one cell, at a time.  Certainly you've heard similar stories about someone who was given weeks to live and they are still alive a year or more later, or a tumor that shrinks, or symptoms that diminished.  What about when you are surprised by a gift of money or a credit on a bill, or even an unexpected markdown at the cash register?  Perhaps these small events don't turn one person's circumstances around, but they make a difference.

God's hand is at work in various and different ways if we have the eyes to see and the heart to give Him the glory.  Don't focus on the whole beach, or you might miss an opportunity to celebrate....

The Starfish Story

by Loren Eiseley (1907 - 1977)

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."

This story is a great metaphor for community service, evangelism, etc., and how we can change the world one life at a time.  Recently I've been mulling over my struggle with skin cancer.  Often times my battle seems like that beach full of starfish:  cancer cells by the hundreds.  To get rid of them all would take a miracle, and that is what I ask for often.  But in the meantime the battle can seem so futile.  Then I thought of how my treatments have "made a difference for that one."

Each time I have a cancerous lesion treated, victory has been won.  A difference has been made.   A miracle has occurred......one lesion, or sometimes one cell, at a time.  Certainly you've heard similar stories about someone who was given weeks to live and they are still alive a year or more later, or a tumor that shrinks, or symptoms that diminished.  What about when you are surprised by a gift of money or a credit on a bill, or even an unexpected markdown at the cash register?  Perhaps these small events don't turn one person's circumstances around, but they make a difference.

God's hand is at work in various and different ways if we have the eyes to see and the heart to give Him the glory.  Don't focus on the whole beach, or you might miss an opportunity to celebrate....

Just yesterday morning they let me know you were gone 
Susanne the plans they made put an end to you 
I walked out this morning and I wrote down this song 
I just can't remember who to send it to 

I've seen fire and I've seen rain 
I've seen sunny days that I thought would never end 
I've seen lonely times when I could not find a friend 
But I always thought that I'd see you again 

Won't you look down upon me, Jesus 
You've got to help me make a stand 
You've just got to see me through another day 
My body's aching and my time is at hand 
And I won't make it any other way 

Oh, I've seen fire and I've seen rain 
I've seen sunny days that I thought would never end 
I've seen lonely times when I could not find a friend 
But I always thought that I'd see you again 

Been walking my mind to an easy time my back turned towards the sun 
Lord knows when the cold wind blows it'll turn your head around 
Well, there's hours of time on the telephone line to talk about things 
to come 
Sweet dreams and flying machines in pieces on the ground 

Oh, I've seen fire and I've seen rain 
I've seen sunny days that I thought would never end 
I've seen lonely times when I could not find a friend 
But I always thought that I'd see you, baby, one more time again, now 

Thought I'd see you one more time again 
There's just a few things coming my way this time around, now 
Thought I'd see you, thought I'd see you fire and rain, now

This blog was to be my painting blog but since I am not painting much, I won't be posting to it other than occasionally importing the vulture peak news to it.  That includes my Valcyte journey, links for CFS and HHV 6 and related topics and the occasional painting or whateverings.  If you are interested in CFS and/or Valcyte, Dr. Montoya, anti-viral treatments and tests and all other links and related topics, please go to the above blog.  All info will be posted there daily.

Be back soon.

Everybody's Talkin'

Everybody's talking at me
I don't hear a word they're saying
Only the echoes of my mind

People stopping staring
I can't see their faces
Only the shadows of their eyes

I'm going where the sun keeps shining
Thru' the pouring rain
Going where the weather suits my clothes
Backing off of the North East wind
Sailing on summer breeze
And skipping over the ocean like a stone

One of the things that I know for sure about myself is that I am a fairly jealous person when it comes to relationships.  I try really hard to keep a handle on that because it can tend to be a very unattractive thing.  But, lupus has added to that emotion for me, especially in my marriage.  There are times, I hate to admit it, when I find myself having a little pity party, telling myself that my husband deserves better then some washed up woman with a chronic illness.  When I find myself doin that it usually leads to fear and wondering when he will find someone better then me, when he will leave me, and when he will fall in love with someone else.  Lupus is a forever illness.  It never goes away.  Unlike cancer you can't have chemo and have it vanish, (I'm not say lupus is more devastating then cancer AT ALL) it stays with you forever.  So, I think about those things.  Yesterday was one of those days.

I had a horrible migraine yesterday.  I tried to hide it all day at the office from my husband.  I wish I could have hidden it altogether but by the time I got home it wasn't possible for me to continue pretending.  I landed flat in bed for the entire night.  Now tell me, what husband wants to come home to stuff like that?  I realize you marry for better or for worse but technically most people don't think about major illness being a factor when they get married.  Maybe they should but it isn't like that!  So, yesterday was a bad day.

I often wonder if my kids wished they had a different mom.  I can't always do what they want to do when they want.  Often they have to do things without me.  What kid wants that?  Again...pity party.

But, today came.  Today is a better day.  Today I feel better.  Only a slight headache residual from last night.  And I am going to the movies with my daughter later.  So, today, I"m in a better frame of mind.  Don't get wrong, my mind still wanders...but...today...it is wandering where it should be...on the positive side!  I just wish every day were like this one. 

These are days when the fight doesn't seem so bad!

After driving three hours across Texas to meet with a $300/hr specialist, I had anticipated some treatment, some new information, something. Perhaps my expectations were too high.

Acting upon the advice of my specialist, I am now off Topamax and onto Bystolic: a blood pressure medication also used as a preventative. While I feel better mentally (no more Topamax personality takeovers,) my migraines have not changed in spite of the new preventative or the 6 bottles of Migranal I was told to use every 8 hours for 3 days in hopes of breaking the increasingly persistent Migraine cycle. In fact, the Migranal seemed to make things worse. After every administration, intense nausea set in and I almost blacked out - weaving to and fro, grasping desperately for something to cling to as my vision disappeared into black spots. 

Other than new medications, he did advise I see an Ear, Nose, and Throat doctor in order to have an inner-ear balance test as I have such extreme vertigo and lightheadedness. His last word of advice? A hospital stay for intensive IV treatment lasting an undetermined amount of time. As I was given no guarantee it would work, slim chances that even if it did work the relief would be temporary, and my insurance deductible of $5K is no where close to being met - I'm having to ponder this a bit.

We are coming down the wire here and I only pray that I will get a remission in time for the September wedding.  I've already had to disappoint her, and me, by  canceling some plans with her. It looks like today will be another one, since I'm in a lot of pain though fighting it. We are supposed to go for her first bridal fitting, and also to a make up trial. This is supposed to be a fun  thing that moms and daughters do together.  I feel so terrible, terrible, terrible to have to disappoint her (and me) again.

I try to tell myself its all in my mind, but its not. Its in my bones and in my foggy brain. Yesterday, I had to ask my sister to drive me to the pharmacy and to the lab for a blood draw. I NEVER ask people for help...yet today I am actually considering driving up to my daughter's to do what we had planned. I simply cannot bear to disappoint her...

But then I think, I almost died four years ago when I had my stroke. And  I think, one of her oldest friends lost her mother to cancer just two months before the wedding. Can you imagine how sad that was? So then I think, we're fortunate that I'm alive and able to share the wedding experience with her, albeit at a distance.  And as my father used to say, you have to roll with the punches....

There is a reason that I have chosen Ambermoon as my nom de plume.  It captures beautifully my spirit.  When you think of an Amber colored moon doesn't it evoke a beautiful image in your mind?  One of peace, beauty, calm?  They are rare, Amber moons.  Not something seen every day.  They have a specialness about them.  

I have always been drawn to the night and to the moon.  Even as a child I would sit in my bed and gaze out at the moon and the night sky.  Many nights I wished upon the moon as though it had some magical power, as though it was a tangible sign of God, to remind me he was there, listening.

When I began to drive, I ventured out into the night when troubled or upset.  I used to sit on the beach for hours watching the waves crash, staring at the moon.  My other favorite spot was Wayfarer's Chapel located in Portuguese Point, CA.  I would sit outside the church which is located on a cliff overlooking the sea and stare all night at the moon praying.  I felt so peaceful at those times.  So close to God.

People feel the romance of the moon don't they?  The moon is a symbol of love and affection.  For some its a magical and mystical thing.  I see it as an old friend.  I  miss it on the nights that it is obscured and does not show itself.  

Tonight, like this morning I am gazing out the window at the lake and into the night sky.  I am blessed to witness a full Amber moon shining on the lake's surface.  Its a magnificent night.  A tiny touch of chill in the air.  The stars are in the sky and are twinkling brightly.  Its a night for wishes and dreams to come true.

Ah... maybe oh maybe its a sign from God, that healing is coming soon and that I will have respite from my suffering of my body and soul.  I hope so.  If nothing else, the sight of this night is beautiful and soothing.  Actually, I am grateful for the sight, and that is enough.....

I went to see my GP this evening to get a repeat script of some long-term medication I am on and came out with a team care assessment plan and a chronic disease management plan.

My team care assessment plan is a list of all the medical professionals who are currently treating me whilst my chronic disease management plan is a list of all my health problems, who is treating them and what they are doing about them.  I am not ashamed to admit that after I left my GP's office I had a bit of a cry.  I had always held out some faint hope that once they finally diagnose me they would be able to fix whatever is wrong with me and I would be able to get back to my life.  However,  when your GP start writing phrases like 'to improve mobility as much as possible' that hope flicks and then promptly dies.

However, it is not all bad, now that I have a chronic disease management plan, Medicare (aka the government) will now pay me back $50 for my next 4 physio appointments plus $50 for a podiatrist appointment should I need one.  Also, I get my long-term drugs in bulk now.

I have to go back in 6 months to see my GP for a review of my chronic disease management plan when hopefully I will have an actual diagnosis.  At the moment, my official diagnosis is long-term non-specific myalgia and findings suggestive of hypermobility, which means I have muscle pain that has been going on for ages but no one can work out why, plus I have loose joints which just adds to the whole problem.

Also I was let in on what my rheumatologist has in store for me when I go back to see her, either a spinal MRI to rule out neurological problems or an electromyograph (EMG) to rule out muscular problems or if I am really lucky both.  That means I have to look forward to having a needle containing electrodes stuck in my muscles and a really long time stuck in an MRI machine.  Oh joy.

I have a physiotherapy appointment tomorrow over at the Arthritis and Pain Management Clinic so hopefully they will be able to put me on the right track to getting some of this stuff sorted out.

I am in bed today .... again .... all day long except to pee .... One would think I had a terribly exciting night or yesterday or a whole week's worth of excitement crammed into a day (or a night) but no, dear readers...it's just my usual boring state of virus laden body combined with a stimulating trip to see my doctor! 

The treatment involves a two-day stay in Buffalo. For the last three years I've stayed in a guest house called Kevin Guesthouse. It is actually the first house of it's kind, that Ronald McDonald Houses (and similar places) are based upon. The idea is to provide affordable and charitable housing for people who are undergoing medical treatments and/or their families. Personally, while the financial aspect is nice, the reason that I stay there is for perspective.

When one lives with a chronic illness, and you have to inconvenience yourself and those around you with doctor visits and treatments, it is easy to get melancholy and feel sorry for yourself. When I visit this guesthouse, I am forced to "get outside" of myself. Here are some of the stories I've had the privilege of residing with over the years:

• A woman and her husband had traveled to Niagara Falls for their 50th wedding anniversary. He suffered a severe heart attack while there, and she had been staying at the guesthouse ever since (4+ weeks).
• A wife whose original plans had been to stay a week for her husband's cancer treatment, but complications had extended the stay for over a month.
• A mother who was waiting for her son to die. This young man had been battling an illness for a long time, and she had been called from her home in another state to come and prepare for his passing. When I was there, she had been waiting for two months.

This perspective is so valuable to me. Time spent feeling sorry for myself is so futile, but when I can offer others a smile, a hug, and a word of encouragement, then I actually feel better. During my last trip, a Nurses Association came to the house and cooked dinner for all the guests. Everyone gathered around a table full of delicious food, laughing and talking. That night, everyone in the house was full in a much deeper way than our bellies.

A different perspective is often so valuable and necessary. Sometimes it involves work, or getting uncomfortable, but obtaining a new perspective can be so surprising and life-changing that it is worth the effort involved.

The treatment involves a two-day stay in Buffalo. For the last three years I've stayed in a guest house called Kevin Guesthouse. It is actually the first house of it's kind, that Ronald McDonald Houses (and similar places) are based upon. The idea is to provide affordable and charitable housing for people who are undergoing medical treatments and/or their families. Personally, while the financial aspect is nice, the reason that I stay there is for perspective.

When one lives with a chronic illness, and you have to inconvenience yourself and those around you with doctor visits and treatments, it is easy to get melancholy and feel sorry for yourself. When I visit this guesthouse, I am forced to "get outside" of myself. Here are some of the stories I've had the privilege of residing with over the years:

• A woman and her husband had traveled to Niagara Falls for their 50th wedding anniversary. He suffered a severe heart attack while there, and she had been staying at the guesthouse ever since (4+ weeks).
• A wife whose original plans had been to stay a week for her husband's cancer treatment, but complications had extended the stay for over a month.
• A mother who was waiting for her son to die. This young man had been battling an illness for a long time, and she had been called from her home in another state to come and prepare for his passing. When I was there, she had been waiting for two months.

This perspective is so valuable to me. Time spent feeling sorry for myself is so futile, but when I can offer others a smile, a hug, and a word of encouragement, then I actually feel better. During my last trip, a Nurses Association came to the house and cooked dinner for all the guests. Everyone gathered around a table full of delicious food, laughing and talking. That night, everyone in the house was full in a much deeper way than our bellies.

A different perspective is often so valuable and necessary. Sometimes it involves work, or getting uncomfortable, but obtaining a new perspective can be so surprising and life-changing that it is worth the effort involved.

Before I get a ton of emails wondering if I am suicidal, I can assure you all I am not.  However, a person in my position cant help but go down the road of this thinking occasionally.

As my health declines, and I am able to do less and less I wonder at what point will I stop being an asset to the world and start being a burden.  When the pain becomes so bad that I am not able to enjoy life, or respond to those I love.  Would it be more painful for both myself and everyone else around me to continue?  I mean I would be taking up resources and energy that could be put towards the living.

Does a person have the right to decide to take their own life rather than suffer it out?  I can't even begin to imagine what that suffering could teach anyone by that point.  I can't think of one single reason to stay living in that kind of state.  Everyone suffers.  

Right now I have times of having to spend days in bed.  Its been weeks sometimes until I could get up.  The strain on my family is horrendous.  But that isn't usual.  Its only occasional at this point.  I still maintain a healthy active life despite my limitations for the most part.

Sometimes the pain is so bad I think I will break.  I don't know how I will go on one more minute.  Pain medicines don't relieve anything when it has gone that far.  They take the edge off if that.  At times, I have had to be checked into the hospital for days for them to control my pain.  If it were like that every single day would I really want to live?

A person's choice at that point should be considered.  It would be a release for everyone.  I don't condone suicide for the most part.  I really don't.  I don't think of that as a normal option for anyone.  I think its the cowards way out for alot of people.  But for people who are in pain, and can't enjoy any aspect of life, or people with Alzheimer's or other degenerative diseases where they end up to be nothing of themselves but a shell, I have to say that I understand it.

A very close friend of mine tried to do themselves in a while back.  It broke my heart into a million pieces.  I could not imagine my life without them in it at all.  I cried and cried.  Thankfully they were not successful and they are still here with me.  My friend though was and is in pain.  Pain of the mind and soul.  When we discussed it later, they asked that I let them go.  My argument was at the time that they could get better and life could change for them.

Life cannot change for people like me.  It just gets worse.  I am not in any way ready to do myself in now or even in the foreseeable future.  Its just a thought that needs to be explored.  Where my moral compass lies on the subject.

I'd like to hear your thoughts.  At what point do you think if ever it is ok to choose your own time?

Health Secretary Alan Johnson stated that previously the care for dying 'has been a relatively low priority, and as a result the quality of care has been variable'. This follows campaigners' concerns that this area is neglected by the NHS with hospices complaining of a lack of funding.

So, how will the End of Life Care Strategy change the lives and deaths of the 500,000 people a year who die of chronic illness? Currently, only one in five will die in their own home despite the actual figures suggesting that this is the place where two thirds wish to die.

The choice will now be available and more people that decide they wish to end their life at home will be provided support and assistance. There will be the introduction of 24 hour nursing teams to offer help and care when required. The strategy should see a massive increase in numbers dying at home, a personal preference of so many.

The system will look to replicate the success of the Marie Curie Cancer Care Delivering Choice programme. This has enabled people the choice of dying at home with specialist carers, leading to figures doubling since its introduction.

Maria Gleeson's husband Paul wanted to die at home when he was diagnosed with cancer. With the help of Marie Curie Cancer Care, his wish was granted and he spent his last days with his wife and three daughters. This would not have been possible without the support of the Delivering Choice programme, emphasising the importance of the End of Life Care strategy to so many families.

The freedom of choice enables families to spend the last few moments together and Maria Gleeson claims that it 'should be a right, it is about dignity'. It would seem that care for the dying has been woefully ignored and denying dignity to those at life's end is a crime against humanity.

I have found this such an interesting place - this bloggosphere of ours.  Real connections being made with one another.  Real friendships being established with people we may or may not ever meet in our real lives.  Yet we read each others most intimate and private thoughts.  Most of us don't even know the other's real name.  We know each other by the blog name or nick name we choose.  Yet, one can't deny the feelings are absolutely real.

I found the same thing happened when I ran a chat channel for many years.  Real attachments were formed.  True friendships, real romances.  Some deeper than real life ones could ever be.  

Why?  Because there is that layer there.  That ability to share without having to look the other person in the eye.  The option of being able to have the ability to turn the computer "off" at will.  You can't do that in real life can you?  You figure the anonymity here will protect you and your feelings from being hurt, so you expose your inner self more.

For me, I have noticed that with a few very close friends in real life, it is a way for me to communicate with them on a whole new plane.  One that I have never been able to do before because of who I am in life.  I have never been able to open myself and my thoughts.  They get to see a different side to the person that always shows confidence and strength in her public face view.  I get to be vulnerable here, and lost at times, and admit that I don't have all of the answers.

The friendships I have made in this place have become so important to me.  How you all make me laugh each and every day, or make me think.  Some of you challenge my thinking or my spiritual belief system.  Its always different, and always interesting.  Some of you teach me, some of you heal me with your words.

My situation keeps me from straying far out into the world right now.  I am caring for my mother who is terminally ill, and my own health is not the best.  So, here is a chance for me to shine and show who I really am and be equal mentally and physically in cyberspace.  I don't have to be disabled here.  I can just be me.

So thank you.  Each and every one of you who takes the time to read this blog.  Thank you to those of you who take the time to comment.  It is appreciated, and noticed........

People don't understand just how important keeping a healthy blood pressure is in overall health and wellbeing.  Your blood pressure actually affects the performance of every single organ in your body.  Having high blood pressure is no joke and should be taken very seriously.  

It can cause the following:  STROKE, heart attack, Erectile Dysfunction and loss of sexual libido, Headache, Enlargement of intestinal tract, Eye disease, and Fainting just to name a few off the top of my head.  Men who have high blood pressure are often "red in the face" because the blood is rushing to the brain and is literally pounding.

Controlling blood pressure is a serious thing too.  There are many drugs on the market.  But there are also non pharmaceutical ways of helping yourself.  

First of all changing your attitude is the biggest thing.  If you are someone who has road rage for example, you might want to reconsider how you react.  Screaming and yelling at cars only hurts you.  If you are a yeller in general, you might consider getting some counseling so that you can learn other methods of effective communication.  Give yourself better tools.

Making sure you have plenty of laughter in your life is a great way of helping lower your blood pressure.  Its true.  When you laugh, you release endorphins into the body that relax and lower your blood pressure. So taking time to watch more comedies and less stressful chop-em-up or depressing movies will help lower your blood pressure.

Having a pet dog or a cat or other animal is known to significantly lower blood pressure in a high number of patients!  The simple act of stroking an animal, calms a human extremely quickly.  Having that unconditional love that an animal gives often is helpful to mental well-being of a person and therefore lowers blood pressure.  Doctors are even starting to prescribe animals to patients!

Meditation.  I know I say this alot, but meditation can lower stress and therefore lower blood pressure.  Using this as a tool in your life can really help.  Meditation doesn't have to be you sitting cross legged hugging a tree singing Kumbya you know.  It could be a simple counting backward from 10 to 1 and breathing, or closing your eyes and imagining the stress leaving your body for a moment.

Diet. Lowering your intake of fat and cholesterol can really help.  Also your carbohydrate and sugar intake.  Why?  Because if you are constantly on the sugar highs and lows your mood goes with it.  Much better to be even with your blood sugar and even with your temper.  Adding a glass of red wine to your daily routine is also a good thing.  There are proven anti-oxidants in the wine that lower blood pressure.  Of course this needs to be done in moderation.  The consumption of dark chocolate (coaca of 70%) is proven to decrease blood pressure too.  Removing caffeine (coffee, tea, soda) from your diet too will help reduce your blood pressure.

Stress.  Everyone has stress in their lives.  Jobs, home, family.  But there are always things that you can do to help eliminate unneeded stresses and worries.  Maybe it is a change of career that is needed, or a change in lifestyle.  Take a look at what is really important and re-evaluate.  You might be surprised at the answer you come up with.

Smoking.  If you smoke and have high blood pressure, you need to stop.  You are a walking time bomb awaiting a stroke or a heart attack.  You don't want to be a vegetable do you?  Imagine a world where you could do nothing for yourself, you can hear in but can't speak out.  Are the cigarettes worth that really?  Are you willing to do that to yourself or your loved ones?  How would they survive without you?  How would everyone cope financially?  Think about it.

Exercise.  I cannot tell you enough how important this is to your overall health and well-being.  This is truly the most important thing you can do to help yourself.  It helps you both mentally and physically.  It does not need to be big, it can be a simple walk each day.  But it needs to be regular.

Sleep.  Getting the right amount of rest for your body helps lower blood pressure.  It only makes sense since lack of sleep makes a person irritable, and lowers your bodies ability to function properly.

Music.  Music is a great relaxer and stress reliever.  Playing music in the car for example helps the time go by faster and the drive less stressful therefore lowering your blood pressure.  The right kind of music can also help put you in a semi-meditative state.

Finally there are the pharmaceutical solutions on the market.  There are many out there.  But they have side effects.  For men, they cause alot of E.D. issues.  For women they cause depression.  You have to figure out what is the right combination for you.  There are different types available on the market.  Some are more effective than others.  Make sure that you work with your doctor and tell him/her if you don't feel right.  Be brave enough to ask to change medications.  You aren't stuck with one.

My friend Sanityfound inspired this post today by mentioning a great song by Queen.  I'll leave you with it to round out your day.

disclaimer:  I am not a doctor, nor do I have any FORMAL medical training.  The information that I provide is from my years of study due to my own disease.  It is not intended to replace medical advice nor should you not seek medical advice.  Use this information in addition to the stuff the doctor tells you.

ButYouDontLookSick.com - The daily online magazine for the Chronically Ill and disabled has managed to reach a milestone that so many websites fail to see. This month www.butyoudontlooksick.com celebrates its 5 year anniversary.

The site, founded by Christine Miserandino, offers tips, product reviews, articles and essays which have become invaluable to people with any chronic pain condition, or illness.

“I am so proud to be online for 5 years. I have seen my site grow more then I ever imagined. I always knew we could use technology as a tool for those of us with health issues to help each other and build a community.” says founder Christine Miserandino.

In recent years, ButYouDontLookSick.com has transformed from a personal web site to an international community and support network for the chronically ill as well as their loved ones. The site now features articles from several talented authors as well as a forum, chat room, “Get Well Gift Store”, and daily content delivered via newsfeed or e-mail newsletter.

ButYouDontLookSick.com is also the home of “The Spoon Theory”, a young woman’s explanation of what it feels like to live with Lupus. In her story, author Christine Miserandino wanted to explain how someone with a chronic illness makes choices everyday that a healthy person takes for granted. “I wanted something for her to actually hold. If I was in control of taking away the spoons, then she would know what it felt like to have something else, in this case Lupus, being in control.” says Christine. “The Spoon Theory” has been featured in many health newsletters, magazines and support groups. The story has touched so many of the ButYouDontLookSick.com readers that they affectionately refer to each other as “Spoonies”.

The message boards and chat room at ButYouDontLookSick.com have nearly 5000 active members. “It is very easy to feel isolated and uninformed when you are sick or stuck at home. I built this site to help people living with similar symptoms or experiences make connections.” says Christine Miserandino. With this much growth in the first 5 years we are excited to see what the future holds.

*Christine is available for interviews, quotes, or guest blogging.

_______________
Ends press release

"Unwell"

All day 

Staring at the ceiling 
Making friends with shadows on my wall 
All night 
Hearing voices telling me 
That I should get some sleep 
Because tomorrow might be good for something 
Hold on 
I'm feeling like I'm headed for a 
Breakdown 
I don't know why 
I'm not crazy, I'm just a little unwell 
I know, right now you can't tell 
But stay awhile and maybe then you'll see 
A different side of me 
I'm not crazy, I'm just a little impaired 
I know, right now you don't care 
But soon enough you're gonna think of me 
And how I used to be 
Me 
Talking to myself in public 
Dodging glances on the train 
I know 
I know they've all been talking 'bout me 
I can hear them whisper 
And it makes me think there must be something wrong 
With me 
Out of all the hours thinking 
Somehow 
I've lost my mind 
I'm not crazy, I'm just a little unwell 
I know, right now you can't tell 
But stay awhile and maybe then you'll see 
A different side of me 
I'm not crazy, I'm just a little impaired 
I know right now you don't care 
But soon enough you're gonna think of me 
And how I used to be 
I been talking in my sleep 
Pretty soon they'll come to get me 
Yeah, they're taking me away 
I'm not crazy, I'm just a little unwell 
I know, right now you can't tell 
But stay awhile and maybe then you'll see 
A different side of me 
I'm not crazy I'm just a little impaired 
I know, right now you don't care 
But soon enough you're gonna think of me 
And how I used to be 
Hey, how I used to be 
How I used to be, yeah 
Well I'm just a little unwell 
How I used to be 
How I used to be

The episodes of pain got worse and came more often, became more generalized over my entire middle section, doubling me over until tears came unbidden. Once a week Twice a week. Then an entire weekend. Finally, two weeks ago on Monday, June 23, the pain was so great that I could hardly stand. I asked my spouse to take me to the ER.

A CAT scan showed a partial bowel obstruction. They checked me into the hospital on "Bowel Rest" (no food, not even ice chips, and lots and lots of IV fluids), which the original doc hoped would fix me.

But the surgeon (who looks eerily like my favorite character from St. Elsewhere, Dr. Jack Morrison played by David Morse) came in at 10 AM on Tuesday and said the CAT scan showed a distinct blockage in my bowel caused by a kink, or scar tissue, or something else wrapped around it. It was even more remarkable because above the kink, my bowels were swollen; below they were normal sized.

Since I'd had pain off and on for about a month, he was worried about necrosis (dead or dying tissue). Because this is considered a dangerous situation, the surgeon wanted to perform an exploratory laparoscopy ASAP. It sounded like a sound plan. I said yes (then checked with both my docs, who agreed it sounded sound).

I went in for surgery at 5:30 on 6/24. Dr. Pierce poked around for TWO HOURS because once he got in there, he found:

Nothing.

Seriously.

Everything looked good in the bowel department. No kink. No swelling. Nothing like the CAT scan that had been taken the day before. He told me later that, if it was scar tissue or something else wrapped around the bowel, it could have been snapped loose by just starting the surgery, or it could have gone away on its own. He didn't like the look of my appendix, so he took it out. Basically, the surgery was:

Inconclusive.

Two weeks later, my four little belly scars were pretty much healed, but I was still having twinges that reminded me of the original pain. In my follow-up appointment, my surgeon located the pathology report on the appendix, which said that I had, "early acute appendicitis."

"Boy," said my surgeon. "That sure makes me feel better about taking it out."

But my belly still didn't feel quite right. He told me that it might take two to four more weeks to completely heal. If I still had pain after that, I should give him a call.

But it didn't take two weeks. Two DAYS after my follow up with the surgeon, I had the worst attack of belly pain yet. Yes, ladies and gents. Two days ago at this very time, I was barfing up dinner, bent over in excruciating pain with a fever of 102.4.

Despite my spouse's best effort, I resisted going to the ER because, despite the good pain drugs they have in the hospital, they don't let you sleep. And I really wanted to sleep. Once I stopped ralphing and stopped moving, I actually felt okay. Well, not okay, but better. Moving bad. Sitting still, good.

I got through the night sleeping on our reclining couch propped up and protected by six pillows (lying down was out of the question - likely to lead to more barfing and pain). Yesterday, I talked to the surgeon's nurse for a long time. My symptoms had improved enormously overnight (much less pain, low grade fever, no barfing, just fatigue, a feeling of bloating, and general discomfort), which made us agree that I didn't have an infection from the surgery (that would cause nonstop pain and fever).

Her advice: Wait for it to happen again, and then dash to the ER so they can run more tests on me while I'm in acute pain.

Sorry to say I have to agree. It could be a bowel that's twisting and untwisting. It could be something else (although the CAT scan report said that all my other innards looked fine - including gallbladder, kidneys, etc.)

I'm better still today, but something ain't right, if you know what I mean.

So, if you don't hear from me, it's not because I don't care. I'll do my best to keep you posted.