Quixotic No More

What a long, strange trip it's been!

2012-01-20T18:43:00.001-08:00

It feels so good to be alive and doing well!!!

I am so much more peaceful, now.

The last two years are blurry. I remember the "highlight reel," but other stuff is tough to 'pull up.' My memory is a bit foggier, but overall, I am so much better. I hope the 'brain fog' clears more, and soon--I get frustrated when I cannot remember things as specifically as I would like. But, I think it will improve. After all, each day is a bit better. :)

2011-11-15T19:08:00.001-08:00

My Mom has an impressive blog. This has made me realize, mine need some updating and work to stay current.

What have I been up to? I have been reading more Janet Evanovich novels. They always make me laugh and smile!

That and going to Columbus flea market. A favorite place.

Ten Years Later

2011-09-10T11:50:00.000-07:00

Tomorrow will be the ten year anniversary of the attacks on September 11, 2001.

It will never be "just another day," for all the responders, survivors, and families.

I don't believe in closure. There is no way to replace people who were taken from us. There is no way to revert to a more carefree time.

But, there is always light even in darkness. The light of the bravery of everyone who helped anyone else during that time....the light of people coming together, to support and comfort one another.

May we always remember and honor all those who helped in any way that day and in the years that have followed--from our first responders to our soldiers--All gave some and some gave All.

Coming out of a Fog

2011-04-08T16:34:00.000-07:00

Finally coming out of the fog and doing better than just surviving. Thank you to all who have stuck by me, loved me, and been patient. The past 2 years have been a doozy. But hope springs eternal, and things are improving and will continue to improve. You are my Angels. Thanks

Life Moves On

2011-03-05T06:18:00.000-08:00

Life Moves On

Each day you see the Dawn

Leave fear behind and realize that

Reality will change.

Things will not always be

What we imagine them to be

Tragedies come and go

and Life Moves On.

What we carry on our backs

and for how long,

We choose.

So lighten the burden

Breathe

for a moment

and know that

As long as the sun comes up

You will have some second chance,

And maybe it will be better than

Where you would have been

Otherwise.

Pain still peeks through

2011-02-08T17:55:00.000-08:00

Pain still peeks through

in tiny tears

That I will not let fall

rainbows that rest

on eyelids

trembling

remembering

what started it all.

It was a comfort to see an old colleague

but I was on the wrong side....

We should have been helping someone else, together

working in the ambulance

Not me needing

his help

taking that long, short ride.

lights flashing in the night

shadows maybe hide the tears

Feeling for a moment

the brotherhood lost

found once more in a moment of compassion

and then realizing again

for so long now

its been the end.

...CM 02/8/11

We all are stronger than we know.

2011-02-07T17:16:00.001-08:00

Keep waking up. We're all stronger than we know. :)

A little bit of kindness

2010-12-31T18:20:00.001-08:00

A little bit of kindness changes everything, and can help to ease the pain and fear of the past.

Sometimes, Angels just pop up when you need it most.

To all those Angels,

Thank you.

Anatomy of a Rini

2010-12-02T16:18:00.001-08:00

I have learned something--while I don't notice the braces, canes, good days versus bad days etc., other people do, and find it confusing.

What can I say, I am a Mud skipper! Some days I feel like I can do anything, other days, I'm sore, tired, and out of it and simple tasks are a doozy. It's actually normal for people with TBI to have fluctuations, even after a good recovery. Health changes, and abilities decrease, then go back to being ok again. Even an infection causes a relapse of TBI symptoms for a time.

To me, these fluctuations are no big deal, frustrating, but not life-altering. However, I am learning other people find these fluctuations overwhelming, to the point where a few people I thought would be my friends, forever, told me they thought I was faking it.....and now, we are no longer friends. They made up their minds, doesn't matter what my doctors or I say.....according to them, I don't need the cane (prescribed) or the wheelchair/powerchair (prescribed).....please note, none of them are doctors or have read my doctor's notes.....

I don't usually talk about this stuff. Things change at the speed of light, I can't even remember all the details anymore! Even though I am only 27, my doctor says, I am getting old early. A paradox in someone as young as me....but it happens from some kinds of injuries and insults to the body. Also, I don't want anyone to think I'm complaining, or whining, or want attention--I try to look normal, I try HARD. I don't define myself by all these details, I just find a solution and it becomes part of my routine, so I don't think or worry about it. But because I look normal, people think I'm faking, or wearing braces etc. for attention. I don't want pity, I just want to live my life the best I can. My 'gear' helps me keep moving, and gives me the freedom to work and travel, etc.

I have a lot of equipment, but that is so that I am ready for anything--good days and bad days, so I can go to work, and get out, socialize, get more education, and enjoy life. It might not always be 'pretty,' but I make it work. I'm getting out there, working, and living my life. (Thank you, Scott, for that insight!)

So, bearing that in mind, I decided to do a brief synopsis of the unique "Anatomy of a Rini" to maybe prevent future heartache.

In the picture above, you can see I wear braces. I don't 'see' them because I put them on like clothing every day. It's routine after a while. The black sleeve on my left shoulder that wraps around my chest, helps to keep my left shoulder from dislocating. I have "laxity" in some of my joints, meaning they slip around/out of place easily. This can pinch nerves and be very painful. In addition, if my shoulder slips downward, it pulls hard on my neck muscles, which then spasm, and I get bad migraines. Sometimes, the braces cause their own problems--overall they help, but I've gotten pressure sores on my arm, and the weight of my left arm being supported on my right shoulder, irritates a nerve that makes the right side of my chest and right arm numb.

My trunk muscles are weak, and as a result, my posture is poor. Especially when I get tired, it's hard to hold myself upright. I can't do physical therapy for my trunk right now, because it causes problems with the spasming that affects my breathing, and irritates some of my nerves as well. The hard backed brace that has straps like a backpack keeps my shoulders back and helps me stay upright, and keep good postures which helps the pain from the degenerative disk disease in my upper spine. Degenerative disk disease can be very painful. I have some arthritic changes in my low back, and in my upper spine, the disks are damaged, so there isn't the natural cushioning between the bones. It's usually not too bad, but if I am standing for more than a few minutes, or do something too physical, it can get bad. then I need pain medicine for a few days until I feel better. Using a wheelchair or power chair helps me avoid using pain medicine if I am going out for the day and would otherwise be on my feet a lot.

I have to carry an "ambu bag" with an adapter, because sometimes I get bad muscle spasms that wrap around my back and chest like a boa constrictor, making it hard to breath. Sometimes, this has gotten very bad and I've had to go to the emergency room. Since I started using the ambu bag to stretch my muscles around my chest, and get enough air, I have not had to go to the ER for my breathing. I also get steroid shots every 12 weeks into the 'paraspinal' and 'intercostal' muscles, and may be getting botox, soon. The spasms are the reason I need to take muscle relaxants frequently.

My doctors say its episodic spasticity, resulting from tiny scars in my brain from the head injury. I've also been told that some areas in my brain, like the area having to do with motor (movement) have shrunk a bit.

Because of the accident I was in, one of my hips got shoved back, my pelvis sort of twisted. This makes my right leg shorter. I wear a thicker shoe on the right side, which helps even out my walk, making me more stable, and reducing the pain in my knee, hips, and low back that would otherwise get severe from walking crooked.

I use oxygen, to help with pain and to relax my muscles. It helps.

I have to take medicine to help with the fatigue that comes with head injuries, so I can focus better, and do well at work and in day to day life. I find the fatigue, which impacts my ability to think and learn and even talk, to be the worst part of having a TBI. (other than the migraines!)

I have to wear a neck brace, sometimes, since the nerves in my neck sometimes get pinched. I also have a special bed for when my breathing or shoulders get very bad, and I can't sleep laying down. I wear compression stockings to help with some 'mild venous disease,' and a vascular abnormality (thankfully functional!) in my legs. My legs discolor, possibly from my spine or from mild venous disease.

My computer has programs on it, so I can talk to it if I am having problems typing, and it can also 'read back' information to me. This helps me keep my thoughts organized when I am working on something complex. It helps me communicate better, since I have mild, but at times challenging problems communicating effectively. It also is a great proof reading tool!!!

I have intermittent problems with the nerves in my arms, which make my hands clumsy. I can't use a manual wheelchair much anymore, and had to get the power chair, because of those problems. My left wrist dislocates from damage to tendons, and I have to wear a brace on it to lift/do anything strenous. If it gets worse, the doctor could 'fuse' the bones, but I'd lose a lot of use of my wrist and thus hand/arm, so I don't want that.

My wheelchair and power chair let me stay out all day, and take a break from pain medicines.

But, to me, all these things don't mater. The clothes don't make the man, and the adaptive equipment does not make the woman.

I have TBI, I have laxity in my joints, I have a touch of arthritis, I have breathing problems, my doctor still thinks I may have a muscle disease, too, though I don't think so, but I am OK!

I have good days and bad days, but the tools I have allow me to keep going no matter what, and get out about and live a good life.

And if anyone thinks I'm faking it, well, I don't think anyone could be THAT creative, LOL!

And while I wish I didn't need any of this, I've learned to rejoice in the fact that the tools let me live a good life and have a good job and spend time with people I care about.

It's like having a dishwasher instead of washing the plates by hand.

We all have a choice, I choose to rejoice that I have the tools that I can manage any day, whether this mudskipper is swimming, or walking, or running about, I'm good.

Life's good.

Diagnostic Vicissitudes; or, the Roller Coaster Ride Endeth.

2010-11-30T09:38:00.000-08:00

I’ve been told I had a disease, for which there is no cure,

followed by, “oops, my bad, what have we here?!?!”

Several times in this past year.

I no longer talk about the roller coaster ride,

I hopped off it long ago, to stand observing by the side.

Finally one old Dr. Sage, wisdom, wrinkles and kindness,

Talked some sense, and explained to me

that I’m just getting old at a young age, aging rapidly.

Disability, you see, has an odd ability…to slow one down yet speed up time….if I were 80, I’d be in my prime!

He said," It’s a paradox, don’t you see, to be getting old, when one is so young, and beautiful...."

Getting old is ok by me.

The Show is Over

2010-09-08T04:31:00.000-07:00

Years of rehearsal leading up to one day
Where the best dance shall be put on display
Practicing tirelessly, knowing the routine
Dedicated to performing
Under any scene....

The curtain goes up, your heart quakes but your body and mind are steady
You've trained hard for this moment
You are poised, you are ready...

And then incident command says
The show cannot go on....

The words that chill you to the bone
Still echo in your mind
The performance that never was needed....
Skills rehearsed, knowledge, well versed...
The dancers waiting in the wing
Never to take the stage...

"Go Home, no more survivors...."

God rest their souls....
This was not how the dance of any life, should end.

We never practiced

Never knew

that a script could end this way.

09-11-10

Every day is Precious, so PARTY!

2010-07-14T18:11:00.000-07:00

Every day is precious, so party and make the best of it!

Let yourself be happy, even when 'logic' says otherwise.

Count your blessings.

Marvel at the world around you, the big one outside your head...

Notice the spiderwebs covered in raindrops, now shining in the sun,

Notice the phases of the moon,

Learn to love,

Learn to trust

Make the best of each moment

Because Every days is precious and you can put

Beauty

into it.

Nickelback - If Today Was Your Last Day

2010-05-06T14:16:00.000-07:00

More Dirt ;)

2010-05-04T05:23:00.000-07:00

I finally am back to pottery! I missed the last session, save for one class, due to the severe migraines and such. The migraines are under control, the other stuff, well, we are working on it....!

But, when doing something I love, none of that matters quite so much. Granted, I could only stay for about an hour, but distraction is soooooo good, as long as it is the right distraction, and one that is helpful.

While slightly bummed that one doctor advised against the wheel for now and I was FINALLY STARTING TO GET IT, there are techniques in hand buildling I still really need to refine. Plus, there are endless possiblities there, too.

So I was contemplating life, the universe and everything and started to 'play.' I got the
bowl I made last session ready to be bisque fired, and made another seaweed/seashell decor piece for my sweetheart's apartment. I made a 'brain' paperweight, and found myself thinking about what I want to do next in my career as I was having fun scratching convolutions into the gray surface of the clay.

That's the neat thing with clay and with more free-form hand building....just letting a lump of clay take the shape it, your conscious, or your subconscious depending on your state of mind, wants it to.

I can feel the alpha brain waves. ;)

It really is soothing. I get quiet, and in my 'clay zone.' I may not be as outstanding an artist as some of the students, but I enjoy what I do, and it's good for the soul. Ultimately, that is what counts. You don't have to be better than anyone else, you just have to try to be better than yourself, push your limits, not someone else's.

I look forward to next week's session, getting to sit and play with 'dirt.' No one ever gets too old to play!

Finding Hope in Philadelphia

2010-03-28T18:14:00.000-07:00

This was some really, really good pizza from a Wine and Pizza bar in Philly. Thing is, I never thought that I'd have to pay $2 extra for my pizza to have mozzarella cheese. Apparently, their idea of a "plain pie" was sauce and a crust!

Philly from 10 floors up. The folks at the Holiday Inn Express were so nice and accommodating, and the room, and the view, were beautiful. Definitely makes things better and easier! Thank you, Holiday Inn Express!

Me, Thinking. I went out to Jefferson Headache Center the following morning. I had made an appointment months prior, and wrestled with myself right up till the day before, knowing the huge expenditure of time, energy, finances, and the risk to my job due to lost time if I got hospitalized, but, the past year I was so sick, that they can keep me in the hospital as long as they need to, provided I leave well (duh, that's the goal, folks. ;)

I've developed more neurological issues over the past year. From a particularly bad stretch of 'episodic spasticity' in the spring, to increased difficulty walking, clumsiness, dizziness, 'mild ataxia,' to losing my fine motor skills to muscle tremors, vision blurriness, and then, the "status migrainus," I realized, it's worth any risk to get out there. I can't keep going the way I've been going. I'm struggling to get through each day, struggling to keep going.

I'm glad I went for the evaluation at Jefferson. And, while I am TERRIFIED of things like worse pain or anxiety, I am glad I am going to their inpatient headache center on Wednesday. It's hope, its the best chance I've been given to get well, in a very, very long time. It is the chance for an end to some of the challenges. The neurologist told me some of the "focal neurological" deficits will improve once the status migrainus is under control. The different medication, already, seems to help the tremor.

I finally have hope, I finally have a CHANCE. I told the doctor, how, as weird as it sounds, in a way I spent the last few months, "living" in a way, for the appointment at Jefferson, knowing they are "the best." When I was having my last doubts, I was literally laying on the floor, the morning I left for Philly, crying so hard, praying for guidance. I had thought of cancelling the appointment, scared of losing my job. Then, I realized, too, if I didn't get better, I'd probably be unable to work soon, anyway. I tried to call a local doctor who had been trying to help, he never called back. I called Jefferson. They called back, and talked to me, for a while, and encouraged me to come out, and discussed how they have a lot of ways to help people. Someone heard my prayer! (Thank You!) I drove out to Philly after work, and now, I have a chance.

Even though I'm scared, I'm blessed with a supportive sweetheart, a great family, and great friends. I know no matter what, I'll be OK, and in the end, come out on top. I look at life in terms of, there is some lesson here I need to learn, and to take the lesson, and use it to make the world a little better somehow. I don't know the lesson yet, and I don't know where things will go over the next few months, but I believe that one day, it will all make sense.

Dreams of Nikki

2010-02-10T10:46:00.000-08:00

I haven't seen Nikki in my dreams in years. Two nights ago, she was there. There was a party, she was vibrant, healthy, and free from cancer. We all were laughing and talking surrounded by so many family members and friends.

We all were laughing, talking. I could hardly believe she was there, with us! It was wonderful! There was a wheelchair in the corner, that in the dream used to be hers when she was ill, and I realized, it needed to go, it was not something to be held onto. Perhaps the image of Nikki, sick, was something that needed to be let go.

We all went to the beach, and were having a great evening. My cousins were there, they looked like little kids again. Both of our families and all our dear friends were there. As the evening went on, and the sun started to set, what first appeared as a line of planets showed up on the horizon, two glowing red, and I thought, "There is only one Mars." I realized the other red ball was moving closer, it turned into a cartoon drawing of a plane which 'crashed' without a sound, burrowing into the sand and disappearing, the whole scene rippling like a pond when a pebble is thrown into it. At first it seemed like there was a horrible disaster, then, I realized, no one was hurt, there was no disaster, the only afteraffects were the kids were standing in sand up to their knees, like when the waves rush out around your feet, and they were stepping over it, grinning, laughing, carrying on.

Nikki had vanished from our view, from the scene. But, it was like she had never gone far, and was just on a trip out of town. We all were going to go back to her parent's house to continue our truly joyous visit. When I looked around and realized Nikki wasn't there, I wasn't scared. The whole scene had changed and Nikki vanished as the ripples occured, but the plane wreck had been merely an illusion, Nikki was gone from view, but not from our lives. I felt the reassurance that I'd see her again, after all, I just had after not seeing her in years!

It was nice to see Nikki.

Life Adapts

2010-02-10T10:36:00.000-08:00

On top of Mt. Washington, in the museum, there is a display highlighting how 'life adapts,' to the different elevations/conditions. There is a picture of a hiker geared up for the "home of the Worlds Worst Weather."

We all adapt. Whether it is with warm clothing and an ice ax to scale a mountain that we would otherwise not be able to climb, or reading glasses, or wheelchairs or post-it note reminders, or medications, we adapt to situations and thus overcome limitations.

When we acknowledge the areas where we need to adapt (whether it be that we don't have a mountain goat's hooves, or we have relationship problems, or we get overwhelmed or have trouble walking) we can seek out creative means of overcoming seemingly insurmountable obstacles to follow the Northern Star of our dreams.

Learning to Journey

2010-01-16T18:05:00.000-08:00

Life is a journey; the beginning and end are predictable occurances, so, while in Life, it is best to find things that bring joy and meaning! For some, it is being like "The Lupine Lady," and trying to make the world more beautiful.

I had a beatiful day today. I got to see my Hunny, and my dear friends in South Jersey. It was really, truly, wonderful!

The doctors are still fighting over my health, but none of that matters right now. The tummy surgery to fix the Sphincter of Oddi dysfunction was truly a success and whil not 100% I am better than I've been in a while. I am still very tired, but I am thankful that I was able to get up and dressed and see people whom I care very much about, today.I choose to focus on that, and on the fact that I can sit here, warm, safe, and comfortable, and type away at the end of the day. That's a lot more than many, many, many people can even hope to do and have tonight, and for them one must pray and help where possible.

I don't know where the current road is taking me: I don't know what answers I will or will not find, or if any of them even matter, but I do know this; that I must not succumb to feelings of doubt or self-pity, but rather, make a conscious effort to rejoice in the moment, and to do as much as I can for as long as I can and to live life in such a way that two things occur:
1) When it's my time, I can cross over knowing I made the world, overall, better for having journeyed through it, in large part by loving and allowing myself to be loved.
2) I can skid sideways into the grave, screaming Wheeee! That was FUN!, body all used up, Grinning ear to ear and knowing I lived!

Enjoying Music, Moving Forward towards Whatever

2010-01-08T19:46:00.000-08:00

Years ago, my goal was to do one thing per day. It served me well, so I think I will do that, again. It doesn't matter what that one thing is, it can be small. It can be big. As long as I do something. Today I did a lot of stuff that while seemingly minor, I had been putting off.

I've gotten that feeling that I've been treading water, staying in one place, barely afloat, for too long. It's safe living home with Mom and Dad, and it's good. But, I have something to prove, to myself. That I can make it on my own. I feel it's something I need to do, for me, before I get married, because I think it will be beneficial to me, for me to see I can live on my own successfully, for me to stop doubting myself, and to regain some perspective by stepping out of my comfort zone.

I need to stretch these wings a little, maybe it will help. My body is healing from my last surgery, every day. Each day I feel better and better, though I still have a way to go. Tonight, I went to the movies with my Love for the first time in a long time, and went out for a good dinner together. It's been up and down lately, but, as my Love puts it, "It's good to have my Reenie back."

Me, my personality, myself, are re-emerging.

I go back to work on Monday, and intend to just keep my head down, and do my job, do it well, and let things on that front, stabilize.

I guess my biggest fear about moving is the fear of losing a sense of security and stability. There are all the what ifs--what if I get sick again? What if I lose my job? But, I realize, there will always be what ifs, the trick is to control the things I can, and beyond that, play it smart. I guess that is the best that any of us can do, since there are no guarantees. That being said, I know I'll always have people who will take me in, family and friends and Love, with whom I am blessed! So, if things head south, I'll survive, I always survive. I won't focus on how scary the world and uncertainty is, but rather, to figure out ways to be creative and get things more stable and re-discover the driven, motivated side of me which has been dormant for a long, long time now, in part because I was feeling sick for so, so very long.

Today was truly a turning point. Being out on dates with my Love, taking the initiative to say, I've been complaining that something needs to change, for a year. So, I'm going to make it change. Am I making the best decision? Who knows, time will tell. Am I making the worst decision? Nope. It's a trial run. As my one friend reminds me, moving to an accessible housing unit is not permanant, I must not view it as a loss of independence but rather a gain. I am going to have my own apartment!! Finally, if all goes well!! It is not permanant. It's something I need to do, to prove to myself I can do it.

What would all the years of rehab be worth, if I never used all the skills I was taught, anyways? ;)

I think this will be good for me, my friends, my family, and my Love, and let me just blossom back into myself, by having a new challenge, and no longer running in circles, unsure what decision to make or where to go, I am making a decision. This is my decision. I'm moving. Its temporary, until I get married. But, it will be a good growing experience so I have no regrets, and I will be more independent again. :)

Playing with Dirt!

2010-01-05T19:39:00.000-08:00

Tonight was fun!

I am trying to branch out. I signed up for a pottery class, with the local parks system. I had done some pottery while in college, and, while I am certainly no sculpture, there is something so satisfying and soothing about working with clay.

I hitched a ride with my Mom who takes a painting class down the hall in the same buildling at the same time. I was impressed with how nice the sudio is. I was a little nervous going in there as anyone is with something new, walking into a room full of new people in a new place, but I am so glad I went!

Its been so long since I really worked with my hands, but this week has been good for it. Between scrap booking a bit one evening, and now starting pottery, it feels good to create stuff, even if it is a very, VERY functional mug. ;)

Clay is fun because it is something most of us played with a bit as kids. As an adult, its so different from the day to day things we use our hands for--typing, working, cleaning...Heck, its a good workout for your paws, too! A different tacticle experience.....so often everything we touch (at least in suburbia, USA) is just plastic, already formed, lifeless, and usually sprayed with some antibacterial something these days. Then there's clay. It's dirt. It's wonderful, mushy, and malliable. I haven't picked up a chunk of it in YEARS, and sitting there today making a little bowl, a clunky mug, and some kind of dish that I'm not yet sure quite what is going on with yet, I just couldn't get over how different it feels than the things we usually hold and touch. Dirt is still fun!! ;)

I am Not a Number

2009-12-23T17:33:00.001-08:00

I am Not a diagnostic code in your DSM-IV.
I am a human being with a life, and more living in store!
How dare these women and men
Stick a label on a life
Categorize another
Brand them, if you will,
Without realizing it causes strife!

Don't you know
The discrimination
Those you label will face?
That you are preventing them from getting medical care
Because the doctors will see your little numbers
Your label and decide
that there is "nothing wrong with this person, they are just 'crazy.'"
As a result
They will suffer needlessly
and when they say they are in pain,
The doctor says, "Up your antidepressant again."

You may as well
brand their forehead
Cast them out among the 'unclean.'
You ultimately will ruin their lives
And rather than see
The pain they have endured
And try to understand
You'll just label them
Give them a number
Like a prisoner...

And,
A prisoner,
Now they shall be,
tattooed with a number
That to others spells failure

Jailed for failing to be
'just like you.'
Who decides
What is normal
Who decides
What personality is 'right?'

Have you ever noticed it changes, as across the span of time
Women and Men's roles evolve
And trends grow and then decline?
Psychology and diagnoses are merely a fad....
Remember hysteria?
Or autism being caused by mothers interaction with their young?

I'd like to say,
LOOK how far we've come!
But I'd be lying to everyone.

We should ease the suffering for which we have pills,

because it's impact on a person's life is REAL.

The anxiety, depression, the emotional pain
Yes, pills are good for those things and should, if desired to ease suffering,

or because it is truly right be given ....

but couple it with caring, and help someone to find

A purpose in life for living....

give people hope and let them know that they are VALUABLE

and not less of a human being!

We all have worth and should always be given every chance to reach our dreams!

But
Don't talk about personalities as being 'wrong'
Don't make a human being a number or a derogatory phrase....
You are destroying a life
Making it not worth living!

Your words are attacking someone's soul

And out of compassion,

I hope you will never know

The PAIN you cause when you say,

"Here's your number, go away."

Snow, Hope, and Sanity (?)!

2009-12-20T10:16:00.000-08:00

The snow outside here is BEAUTIFUL! The sun is out now, too, so it's definately one of those "Courier and Ives" kind of days! I am sitting in my room, mostly, enjoying looking through old photos. My neurologist is an angel, he is the only one even trying to manage my pain. Even with strong medicine, my right side of my tummy still hurts so bad, but I have a 'tentative' surgery date now, so my hope is growing. :)

I am thinking of all the things that will improve and how much more I will be able to do once I feel better! My colleagues and friends have noticed a 'downslide' over the past 6-12 months. I'm hoping that with the bad vitamin D deficiency being treated and relief of my tummy pain in sight, things will improve. I was a little bummed because it's the end of 2009, and all I can think of, in terms of accomplishments, was, well, I survived. I will have been out of school for 3 years in May, but my life just seems to be standing still right now . Hopefully as my health improves, I will move forward and not be merely 'treading water,' and start to live more and do more, again. I think once my tummy doesn't hurt so bad (and I can stand up straight again!) my back and my shoulder and migranes will improve, my PT thinks some of it is postural.

However, I did recently get quoted in a 'best practices' article. That is an accomplishment that makes me happy! Maybe I can get a few more of those on my resume one of these days. :)

So, in the mean time, at least since I have someone trying to manage my pain while I wait for surgery, I am a little more sane than I was the day that the one doctor was practically saying "no go," and all I had been pinning my strength on was fighting to get through to that day.

I am meditating more, praying more, both for health and strength and to get through this surgery, successfully, and in a timely manner.

I am trying to exercise more, when I feel up to it, and trying to pace myself to do a little housework each day. I spend the weekends mostly resting to prepare for another work week. I need to work to pay those bills!!

I will get through this, I always do. I am happy to say that with good PT, my shoulder is improving and I can use my arm and shoulder much better!! :) I'm a tough critter and am blessed with good family, boyfriend, and friends, who are my support and strength and help. :)

On Adapting to Current life, and Waiting for Surgery and Results

2009-12-13T12:26:00.000-08:00

Well, I have hope now but it must be tempered with PATIENCE! Waiting on 'elective' surgery. Elective my left...well, you know. I have Sphincter of Oddi dysfunction. Positive test for it via Hida w/ CCK. I have bad nausea, occasional vomiting, even with alternating doses of compazine and zofran throughout the day. And lets not talk about pain. It hurts. And pain meds don't help much at ALL. And the meds for SOD don't work on me.

So, I actually just want the darn surgery over with. But, because I am a 'higher risk,' I have to wait until the 'special' anesthesiologist is free. I am hoping from the heart that that is soon. I want this over with, the last six weeks have been getting unbearable. Now that there is finally an end in sight, I have to be patient even as the pain gets worse! It's crazy.

I finally got an MRI of my shoulder done, and am waiting on the results. My PT said that there is probably a 'joint capsule injury.' All I know is, my shoulder is unstable and it hurts all the way down to my hand. So today, I was looking online and found that shoulder injuries can CAUSE migraine and neck pain on the injured side because the muscles are pulling funny to compensate. If that is the case, I hope they can fix not only my shoulder, but maybe some of these debilitating migraines which have gotten worse....then again, so has my shoulder.....hrm.......will have to 'wait and see,' and am hoping the MRI results are in soon.

I am so cranky the past few days. I try not to 'take it out' on anyone, but I am miserable! I am so tired, dizzy....and in pain. I just want to be better! I can't use my wheelchair because my shoulder gets infinitely worse if I just push myself across the room. I need my wheelchair because of the pain and fatigue. Being hunched over from the stomach pain makes the ongoing thoracic (degenerative) pain worse. Well, wheelin..... that ain't happening, so I found an 'alternate' assistive device. I got a rollator which is excellent for shopping. I actually got out for a while with the help of my handsome hunny, yesterday! I tried out my rollator for the first time. It's good because it kept me from falling way more than once when I was wobbly/dizzy, I could sit down in line to wait to pay for stuff (always the WORST part of a shopping trip for me is standing still!) and it was a lot less stress on my shoulder than pushing a wheelchair.

I also started using a shower chair (finally) since I have had a lot of falls and near-falls lately. thankfully landed half on my bed yesterday from one that was a doozy and walked away with only my dignity bruised. Don't have any desire to fall in the shower and have anyone help my bare self up.

The shoulder instability, and pain, on top of an underlying muscle weakness/fatigue makes blow drying my hair a challenge, something I would like to do now that the weather is getting cold, so I think that I need to look into one of those clamps that holds the blow drier so you can use it "hands free."

For the record, I must be some kind of a 'proving ground' for new hires. A second aide from the agency I was private paying, quit. And just like the first one, she genuinely liked me as a person! What the heck??!!! I could really use someone right now. Got to ask my dr. for a script for an aide because I am going broke.

Tomorrow I go to see my truly wonderful new doctor who is giving me hope, and listening, and trying to actually get me better! I have to remember to get my pre-op labs done, and I am hoping she will know more about my shoulder by tomorrow, even though I know it isn't too likely since the MRI was friday afternoon and tomorrow is only Monday.

The hardest thing for me, these days, is waiting for relief when I find out it IS out there. I keep truckin', knowing that things will get taken care of. However, I feel stressed and frustrated because I don't know WHEN, and then I get all frazzled because I will feel more secure once it is DONE already.

And currently my shoulder is loudly crunching every time I move, and I have to pee but I don't want to get up but I got to so I got to stop tying and get my dupa over to the bathroom. I just don't want to get up because it is unpleasant--but the alternative is more unpleasant, so I am outta here!

I just hope that I get the surgery I need, and fast, and that it cures at least one of my problems. Please, think positively for me that this will occur!
Thank you!

Not My Choice

2009-11-17T17:33:00.000-08:00

Love says to me
The past year
I've really gone down hill....
We don't walk
Too tired for a good talk
It just takes too much will.

The walls of life are closing in
The pills are failing, too.
Pain is a constant companion
The day is a struggle
to just get through.

Tests I've been avoiding
Become necessity
As things start to fall apart and I
Have a choice to try to see
If anything can be made better
Or if this is what it will always be.

Doctors seldom give answers, merely say
"Might be...."
"Might" and such lame phrases
Give no comfort to me.

Dreams are placed on hold again
While I work hard to keep a job

So I can pay the doctors who are
Supposed to help me be able to work
To go back to school
To live my dreams!
Lately I don't think
Anyone is fighting that hard
for me, it seems.

I'm willing to take greater risks
With surgeries and tests
If there is a reasonable chance
My life will be better yet.

Right now I feel like I am treading water

Every day

Getting no where trying to keep

From drowning

To keep from just submitting to

Whatever this may be....

I don't like feeling helpless

I don't like feeling hopeless

When I know that there is more for me

There is more that I could do

More that I could be

If again someone will start

Once more to fight for me.

I'm running in circles trying to make

Everyone talk together

Figure this out,

Get this resolved

PLEASE make me better!

I've hired someone to help me to
Do things that once came easily
But this is Not my choice
if I had one
For the way that things would be!

So now I stop and try to decide
What will have to be?
My heart is breaking,
Heavey with the saddness
That makes it harder for me
To make the next few decisions
And keep myself positive and strong....
Lately it's been making me sad
Wondering how long
This fight will go on
Fighting for answers
For something that will help more...
I'm tired, the sadness makes me moreso
It just goes back and forth.

It does not seem fair that I've come this far
Only to find myself struggling
With dreams just out of reach

Section 8

2009-09-22T20:23:00.000-07:00

Section 8
Was never part of the plan.
Who I was years ago
And who I am
Never imagined there would come a day
When a social worker would look at me and say,
"It's time."
How the f*ck do you tell me "It's time,"
And ask me to leave all my dreams behind?
How do you tell me it will be great?
A place of my own?
When it's section 8.....
My goals in the past were to be independent
And that goal I have never lost nor changed
It is just that the manner in which I acheive it
Is no longer exactly the same.
I want independence
I want it to be
EVERYTHING I dreamt of
And more for me!
I want to live on my own
I really want my own home.
I want to be married
I want a dog
I want a yard and maybe kids,
And a higher degree,
And the freedom to give back, to live my dreams
This is what matters to me.
Yes, I feel like I'm stagnating, now, and a part of me just seems
To be "on hold," wanting more
But things are just out of reach....
Maybe now, with medicaid
I will be able to breach
The financial gap that holds me back,
from reaching farther for the stars
I just need to feel safe
At the end of the day
And know that no matter what, things will be ok.
I need to make a heirarchy
Of things I can regret
And then a secondary list
Of regrets I can forget...
My plan was to be an EMT
While I went to school
To get a degree in Biology
Then look into medicine
And have a good job
And have my own place
And work my ass off
And not fall on my face
And be free to wander
Where ever I chose
To travel, to experience
To hike in the wild
To see the world
Maybe one day have a child....
I planned to marry my escape
From a life I did not appreciate
Until it was gone
And I was alone and afraid I'd never love again....
I've never stopped dreaming
And having my goals
Even when I doubted myself, my friends told me
You will get there, wait and see!
They were right,
The doubting doubters were wrong
I am successfully
Going strong
Just not as much or as soon
As I wanted to be
THIS WAS NEVER THE PLAN FOR ME!
I felt myself feel both relief, and turning pale
When I got my medicaid card in the mail
Knowing that help was on it's way
To keep some of the horrid bills at bay...
And maybe make me more self-sufficient
That could truly be great!
There must be, there needs to be
A way to never be
Section 8.

On "Acceptance"

2009-09-22T19:04:00.000-07:00

Well, things on the health insurance front are looking up. I also heard about two apartment complexes that I might want to look into.....just not sure I am ready for that, esp. not after the last few months, however, maybe my friends/colleagues all see something I don't see, they keep telling me, "It's time."

Here's the thing: The two housing units I am looking into are "accessible units," one is section 8. What I can't handle is this: The day I move into an accessible apartment, the day I get a section 8 voucher, is the day I am going to have to accept some stuff. Getting my own apartment can be both one of the happiest, as well as one of the saddest, days in my life. I am not sure for many reasons that I am ready for that. I LOVE living at home, and my rent is FAR cheaper here than even section 8 would be.

A social worker, who also has a disability, said to me today, "Sweetheart, you have a permanent disability." I told him I don't consider myself disabled. He has cerebral palsy, and answered me that he does not consider himself disabled, either. Wow, disability really is a social construct. Within the individual, it does NOT exist. You are who you are.

The social worker says, "It doesn't sound like your parents are running away from you. Try living on your own for 6 months, a year. If it doesn't work, move home, your situation is no worse. If it does work, great!"

That makes some good sense.

I talked with my friend who had a spinal cord injury, years ago, and another who has a disability he was born with. I said how I am NOT ready to accept that I "have" a "permanant" disability. My years of denial have suited me quite well, thank you--I think denial is not a bad thing, it is something that allows one to push limits, and succeed to the highest extent....it's just not serving me well when it comes to living on my own. I am doing VERY well. It's just that there are still a few things that need to be ironed out.

I am not ready to "accept" that I "have" a disability. I don't want to accept that that is what is supposedly the reality. This is because Life is GOOD, I am just slightly inconvenienced at times. I AM recovering, it's been 8 years but I AM recovering. I am SO MUCH BETTER than I was 8 years ago. I just don't know how many more till things are where they should be.

Apparently, a "permanant" disability is one expected to last longer than 12 months. Oops, after 8 years.....!

My friend warned me, the day you accept it is a shitty day.

I intend to put that day off as long as possible, preferrably bordering on never. Again, if I listened to everyone who told me I "shouldn't/couldn't" do college, I wouldn't have succeeded. I am doing well!! I just am not quite where I'd like to be.

I just feel like, as long as I live at home and I am working to save money and better myself, I am still getting better. I feel like the day I leave home, and go into the "system," and live in a "project," I am losing, giving up hope, when it is not really necessary to do so. Better I save rent money by living at home while I recover....problem is I am not getting any younger, and that could be years away....how do I pass time and make it valuable/meaningful?

I'll start by going on, and enjoying, my vacation.

I feel like once I get into the "system," there won't be a way out.

I work in a housing project.....It's like a college dormitory....I do VERY poorly in that kind of a setting, overall. I've learned, though, from my job IN a housing project, that if I move into one of those places, I need to keep my nose to the grindstone, turn my apartment into my clean and "sacred" place, and avoid socializing with the other residents/tennants....that causes drama, it's important to have a LIFE and FRIENDS outside the project.......I must NEVER forget that or stray from that.

Wow, I really don't want to live in a project. Not one bit.

And yet, it could be a way to break from my current, stagnant routine...

It is all very confusing. Even worse, I need to make a decision, FAST.

For now, I'll keep slipping my parents money when I can, and working to get better...so far that plan has served me well.

The thought of moving into a "project" is terrifying. I don't care if it is in an "oK" section of town.

That first night, laying alone in the dark, I'd be sobbing. I HATE being alone. I'd be MISSING my dream of true independence.

And projects have RULES, like you can't be away more than "x" number of days per year or you obviously don't need a house too badly you could just keep crashin' whereever you go. Screw that.

If I want to see friends, etc., because of fatigue, I SPEND THE NIGHT since driving home is oftentimes not an option. So, humor me here, does that mean I'd lose housing?
Technically, it could, since other folks don't even have that as an option. It makes sense, in that regard.

For me, though, being a sociable lady, who HATES to be alone and gets lonely and bored and depressed easily, thats bull. no other way to put it.

hrms......

Yep, the projects would not be good for me.

Besides, right now I go to work, and I come HOME. To a house, with it's own DooR. I have a room, I have a yard, I have FAMILY.

I can't even FATHOM going to work in a project, then coming home at night to sleep in another. It would be like I could never escape the cycle!!!!!!!

Probably a real bad idea.

Will give more money to Parents, who are AWESOME, soon.

First Ammendment Rights and Communication: Disability

2009-09-19T06:35:00.000-07:00

I am beginning to think that we live in a country where, if someone does not like what you have to say, they give you a pill to shut you up. I had an appointment with a new(er) doctor yesterday, he has only been attempting to treat me for a few visits now. I had a surgery that didn't go that well years ago, and as a result, have had a total of 3 corrective surgical measures taken. Over the last few months, I am getting stabbing pain when there is any pressure near the surgery site. In the past this has meant: Migrated clip, suture granuloma, hard plastic gut suture poking me because it shifted/broke/etc.

He did an endoscopy. Wooptie freakin' do. It doesn't visualize the surgery site. Without further testing or imaging or even speaking to my surgeon who has done repairs, he tells me it is basically "functional abdominal pain," and recommends I increase an antidepressant, not knowing anything about my history of medication-related problems, some of which have been VERY severe.

I ask him about the dilated bile ducts in my liver: A National health organization says this is not normal; he says it is, and that it is a 'compensatory' mechanism following gallbladder surgery. I'll give him this, he made a good argument. And, my last liver enzyme count was fine.

After I am crying, telling him that I do Not normally have this pain, and that I only called him BECAUSE I was having a problem, he decides to order an MRI to check the bile ducts.

He tells me HE gets frustrated with "functional" abdominal pain, because he can't do much for it, and recommends Tylenol. For some reason, it took 3 tries for me to tell him, I do NOT have diffuse pain, rather, point tenderness. Give me a freakin' marker, I'll put an X on the spot.

He has so far suggested a medication which I KNOW I cannot take, and increasing a dose of one that I am currently on, but that from past history, my doctors and I have learned the hard way, needs to be kept to a minimum.

Rather than initially ordering the MRI on someone whose current set of symptoms started with a new exercise in physical therapy, that may have aggravated some old insults from a "dirty" surgery, he recommends an increase in an antidepressant. Nice. Try to SHUT ME UP, because you can't wave a magic wand.

But, when you have a history of depression, or any other psychiatric disability, or anything affecting/viewed as affecting cognition, and any difficulties communicating your needs (my old Independent Living Specialist says communication was always my issue) people don't listen. Suddenly, instead of looking at the whole picture, it's "You must be mental." It doesn't matter that you had a clip removed from your stomach and they had to take your appendix, too, so your insurance would pay. It doesn't matter that you've had "revisions" done to surgical sites. You must be "mental."

The frustration is overwhelming. I am crying, begging the doctor to help me, and he tells me to up my antidepressant, without considering the fact that I've skirted Serotonin Syndrome (yes, it's VERY real, it's basically a drug overdose. Do your research, look it up) in the past. Meanwhile, he is repeatedly poking my stomach while I am telling him he needs to STOP, each time he presses down, it feels like a thorn is being stabbed into my guts. He doesn't even know if he is damaging something!!

I call my good surgeon who has done all the repairs from the first, crappy surgery. The nurse who knows me and my history, is very kind, and accommodating, and knows the first surgery was a bit of a FAIL, to say the least. She is already thinking, remembers me as the one they took the clip out of. Apparently, (thankfully) this does not happen every day, and is rare enough that I am memorable. Doesn't register with the gastro doctor, though. I have an appointment for a consultation with my "hero" surgeon, in a few weeks. Thank goodness!

His office is already concerned about hernias, gallstones, spasming, more debris from the original surgery......

Meanwhile, the gastroenterologist, disregards the fact that I have definite point tenderness. Disregards my past surgical history. Doesn't even ask to speak to my surgeon if he thinks I'm full of you-know-what. Tells me to up a drug when I tend to react badly to that approach, we are talking EXPENSIVE FAILURE when I get a drug reaction. Everything from heart issues on down the line.

Literally, its someone not taking the time to comprehend, and saying, I don't know what to do, you must be unhappy and that is causing your pain, instead of realizing I am unhappy because I am IN pain and apparently have difficulty communicating that fact, or they just have difficulty understanding it, but cannot admit to their own limitations.

Deborah Heart and Lung Tomorrow

2009-08-27T20:07:00.000-07:00

Tomorrow I go back to Deborah Heart and Lung so they can continue with trying to figure out why I had some bad rounds of trouble breathing. I'm almost back to normal now, but the goal is to prevent this from happening again! I guess my philosophy is, I don't care WHAT is causing it as long as it can be (a) fixed, or if it can't be fixed we find (b) a way to keep things comfy when it does flare up.

So, anyways, I was sittin' here, looking through old pictures and artwork of mine, and thinking, WOW, I am fine, I am doing so much better than I was! And, I know I'll get farther. All my pictures, nowadays, show me healthy and happy! A far cry from years ago.

Will keep you posted.

When is it my turn?

2009-08-23T17:16:00.000-07:00

I try not to get frustrated or fed up, I keep pluggin' because I am always making progress. But after an entire summer of being "under the weather," I am so fed up.

I count my blessings because I am doing better than so many folks my own age, but, I still want more...I just don't feel like I'm living. I love my job, I just feel like that is my whole life right now, I get up and go to work and that is it.

I just wish I had the energy to see friends more and actually be productive all day. I get so fed up! I love my friends and get so lonely.

I have a wonderful Hunny who drives me around on days if I don't feel well, but I don't want to HAVE to rely on him to drive me around. it's tough for me to read computer screens, which is driving me crazy, and I get frustrated because I could be doing more if I could just look at the stupid screen more comfortably.

So, all I want is m ore energy and less pain so I can work more and to have my vision be more comfy, so I gots to get me some new glasses or something, again.

Of course, I still waiting for the magic wand that will do that, so in the mean time, I will continue to do what I know works, to keep pushing my limits, work out as much as I can, and focus on everything I CAN do. I'll keep trying harder every day.

While it might not be the exact way I dreamed it, I'm going to the White Mountains, and it will be Wonderful!

Motivation, Vacation, & Hopefully, only one more to go.

2009-08-19T18:56:00.000-07:00

For the first time in my life, I am looking at going on my first "real" vacation. I am planning to go to someplace I have always wanted to go, since I was a little girl who took out all the books in the kids section of the library on hiking the Appalachian trail, and who incessantly dreamed of hiking up to Lake of the Clouds hut.

I'm planning to go to Mount Washington.

For many, many years, reading about the White Mountains, and hearing stories from friends who had been there, I had this goal, this idea stuck in my head.

Now, things are getting closer than I would have ever dreampt possible!

I know I'd have a TON of working out to do and a heck of a lot to learn before even attempting to climb the mountain, but, I'm getting there.

I'm thinking of taking the Cog Railway, to get up and back, spend some time up on the summit. I'm thinking the earliest train in the day will be the best since you can spend up to an hour at the summit, whereas, later trains only allow you a half-hour. I SERIOUSLY want to spend more than a half-hour. I want to take tons of pictures, kiss my Hunny, maybe sketch some of the plant life, and just bask in a dream (more than one) come true.

******

Suffice it to say, the opportunity to go to someplace I've dreamed of for years, is a HUGE motivation to push myself harder. I'm going to physical therapy Tuesday, Wednesday, and Thursday every week. I want to be in as-good-shape as possible for my upcoming trip! Heck, just to tolerate sitting in the car the whole way up will require some serious conditioning on my end. ;)

Getting this close to this goal that I have had for years makes me start to think ahead even more.

I know I want to stay healthy and fit so my Hunny and I can enjoy our time together.

Today it hit me: For so many years, I've lived with that sense of a "foreshortened future," as they call it in psychology. Supposedly, it is a characteristic of PTSD, the feeling that one will not get to live a full lifespan. I think, though, it has more to do with doctors telling you all kinds of crazy stuff for years and subjecting you to all these tests and pills and what not.

Recently, I was cleared of a medical condition I was told I had for years--I was told I had peripheral arterial disease. Went to a speciality hospital, the doctor said I just had a normal variant, and since it is functionally OK, I don't need to worry, and I do NOT have P.A.D.!! The leg discomfort is probably a minor venous issue, and since the compression stockings help, I just should stick with wearing those. In sharp contrast to the message I was giving years ago, this doctor informed me, I do NOT have a higher risk of losing a leg if I break it due to the arterial variant. SWEEEEEEEEEEEET! I like my long sexy legs. Hearing that I don't need to be all worried about losing my gorgeous gams is the BEST thing in the world!!

So, suddenly, my life span seems....well, LONGER and with more potential.

This gets me thinking...maybe someday, I'll be hiking up Mt. Washington.

And, this makes me realize my longer term goals and motivation: When I am old, I want to be comfortable, happy, and fit physically and emotionally (financially, too). I don't want to be a depressed, older person in a tiny apartment wondering where my life went, or very confused and being matched up with a dementia eval.

I want to be that fun, quirky older lady, with all the pets bouncin' around the yard, in my Hubby and I's little house, living out my days and wearing purple. ;)

So, somehow, feeling that I have a longer future
And dreams that are coming closer and closer to being a reality,
I have found a deeper motivation.

Dear Doctor, Did you know me?

2009-08-04T06:48:00.000-07:00

As an EMT?

As an artist?

An outdoors nut?

A Friend?

Or "just" a patient, a "broken" one....?

There is so much more

To me.

Druggie

2009-07-22T14:08:00.001-07:00

You think I am a druggie.....
After all, I must be
I walk and talk and work and always appear
To merely be tired or lazy.....

I pop pills morning, noon, and night
And sometimes in between
But I'm still walking
I'm still talking
You think therefore there is nothing wrong with me....

But there is a side you do not see.
The pills that keep me awake and alert
Allow me the energy and strenght
To walk and work
The other one keeps my moods more even
Than what they would otherwise be....
It's all just part and parcel
of this kind of injury.

You cannot see with your naked eye
The scarring in the arteries in my legs
That makes walking tiring faster than most
and some days causes pain...
Yet I keep walking
Keep working
Keep fighting
And take a pill again.

You cannot see with your naked eye
What shows up on an MRI
Muscles with scar tissue lurking inside
broken disks
and atrophy....
But you can see the pills
So you call me a druggie.

I hid in the emergency room
When I was turning blue....
When breathing was getting too exhausting
And the effort more than my body was used to....

Now there is an inhaler and two more sets of pills
Along with injections to keep me breathing and comfortable
And thus, hide these ills....

I keep fighting
More doctors
Tests,
Rehab that never truly rests....
Maybe I get a few months here and there, but then
"late onset" gets the best....

I look for new motivations
New dreams to fit
New limitations
I try not to focus on "what if"
But rather on what it is....
A warm day
Love in my Life
the joy of a soft kiss....

I question for how long medications
Will allow me to live this way
Appearing unencumbered to the world
Appearing to be "OK."

But, I must be succeeding
In keeping up appearances...
because all you see
Is a beautiful "lazy" lady...
Who, because she takes pills
Is certainly a druggie.

I might be an @sshole

2009-07-13T20:15:00.001-07:00

I might be an @sshole but at least I'm a loving, caring @sshole.
Gnite.

I can't think of a title. ;)

2009-07-12T05:38:00.000-07:00

Good Morning, I am afraid I cannot think of a title.
I just am staring out the window, looking at the dew/tiny drops of rain that fell thru the night sparkling like rainbows on a pine tree.

I am thankful for my life and for this day, now I am deciding what to do with it!

I feel like I am treading water right now
Debating my next big move, whether it is academic
Or job related or what.

I've hit one of those 'blips,' where I feel like I am not striving for one particular goal, but several, and not making much headway in any direction. I know first things first I need to get some health issues back under control, so I am in the kind of shape that facilitates getting things DONE. A personal priority right now, too, is I choose to 'be there' for my family. I may 'run off' to stay with friends and recharge, but that is so at the end of the day, I can be there for my family and do what I can to make the world a little better by being strong for them.

But for the moment, I think my first big move will be to get my ass outta bed, off of the web, and downstairs for a cup of coffee so I can think more clearly, LOL!

On Wanting to live

2009-06-30T20:46:00.000-07:00

Years ago, I didn't care if I lived or died. Then I got to the point of just living for the moment, then with the recent round of health issues, I realized, unlike years ago, I truly just want to live, to make the world a little better where I can.

Half Happy, Half Bummed

2009-06-27T11:32:00.000-07:00

Happy b/c I played piano today and went to a small church flea market near my house. Bummed b/c I am still not feeling well enough to drive to a party in Brigantine--breathing from muscle/diaphragm spasms is still too bad to forgo meds for the hours the drivewould require, plus its scary to be far afield when have something affecting a vital function. :P Not fun. But, I will focus on creating a kick ass party at my house next month!

On Being more Silent

2009-06-24T05:58:00.001-07:00

Yeah, like that is possible for me. ;)Actually, it's been interesting the past few weeks--while my breathing has been less than perfect, I've actually been talking less, as it requires an effort. Doesn't mean I'm not still chatty as all get out, all things are RELATIVE, and for me, I'm more quite. ;)Of course, this has been interesting. I have realized how much I like to type, and how even if my mouth isn't flapping', my keyboard still is. ;)And no, I'm not sitting here feeling sorry for myself, I am busy making observations and then chatting about them via a means that requires less oxygen. ;)It has been interesting to (and yes this is RARE, I know me! ;) sit and listen more, and not be so quick to respond/have an answer as I usually do, to have to choose words with more care, to slow down.There is a realization of just how little one actually NEEDS to say, as opposed to what one chooses/wants to say. When I was in college, there was a fellow, who, for whatever reason, decided not to talk as a thesis, for, I believe an entire semester. The first time I met him (having known him to be a tad pompous like myself before ;) He was being completely silent. I tried to make him laugh, made a few stupid remarks that normally would have set him off, then realised, he truly did not respond to it...and suddenly I was looking in a mirror, and felt foolish, and realized how juvenile the behavior of trying to 'mess with him' in such a fashion, was. To see no reaction to one's attempts to get a reaction, was quite an epiphany. As I said, suddenly, I was looking in a mirror and seeing my behavior for what it was, in this case, childish and quite foolish and disrespectful. I ceased to try to make him lose his composure. I actually found his undertaking of this thesis, whatever the reason behind it was, to be quite noble. There's the old saying, "One mouth, two ears...." meaning everyone should listen more. I really respected him for his dedication. I also wish I'd somehow told him that his silence was an epiphany for me, on the power of silence, of being a mirror to the world, by his not responding, not reacting, I saw what he was seeing, and ceased to make an ass out of myself. ;)I have a lot more respect for him now, and found him to be a more profound person, when he was spending weeks saying nothing at all, than when he always had some 'brilliant' thing to say.For me, the last few weeks have been an interesting study, especially on the more difficult days, of really thinking of how and if I need/want to respond. I find, more often than not, the less said, the better. There are theories that point to language as being, in essence, a tertiary means of communication--we have pheromones, and body language which have been in place for quite a while for our species and others, to say the least! Spoken language is thought to have evolved later...and perhaps, it is still evolving. So many arguments, so many fights, so many miscommunication can be avoided....it would appear to me that the majority are the direct result of some glitch in communication. And written language? Forget it!Thank goodness for 'emoticons,' or there would be a lot MORE unrest in the web-based world. ;) When there is that absence of face to face communication, which relies on far more than mere speaking and hearing (i.e., body language, and arguably pheromones, etc.), things can disintegrate rapidly. Even when a computer audibly 'reads' text someone wrote, the inflection is lost.In being more 'silent,' and thinking, "is this even worth the effort to respond,and if so, how?" one gains insight not only into one's own behavior, but into that of others, and perhaps, a greater understanding, not to mention, less conflict.That being said, I need to hit the road, get to a meeting, where it is proper decorum to sit silently unless one has business that must be brought up. And sometimes, discretion truly is the better part of valor....So, until I chat away again on this fourth means of communication we've created to augment our other means, have a wonderful day, and take some time to enjoy a moment, andjustbesilent.

1st Life, 2nd Life

2009-06-20T08:09:00.000-07:00

When my second life gets rough
I dream of what could have been
But that dream can easily become a nightmare
So I try not to dwell within
that rhealm of perceived loss...
Where no loss truly exists
Because I never became a doctor
I never finished my degree in biology
So the reality is I lost nothing
But it doesn't feel that way.

I look at peers who are 'at the top of their game....'
And I wish that I could say the same....
Then I remind myself I've accomplished so much
And I will accomplish more....
Gay Leigh's saying comes to mind...
"You can do it all, just not all at once....."

But today my heart feels broken
And I still cannot understand
How people around me can do things like
Party late and still go to work the next day
Or drive for hours like I used to do
Or go to work and school at the same time
And don't have to plan for every contingency
And have the freedom to just pick up and do
Anything that they want to....

And I think of the things I wanted to do
And tears come to my eyes
But then I recall the things
I never thought I'd do
But then managed to succeed....
Even though it wasn't my originally planned time line
I did it
And I need
to Remember how I used to call my friends 'daft' when they told me things would be better, that I would graduate and succeed--
They were right! I know that more, now, than ever.

And I know someday I will do the things I've always wanted to
More education
My own home
Hiking
Living unafraid
And I know such dreams
Are not 'daft' but rather
just take time....and if I keep fighting
Things will work out, fine.

But somedays the fight seems exhausting
I don't want to go for more PT!
But I know ultimately it will be worth it for me.

I guess because I've accepted
I am not going back "on the road,"
I need to find a new motivation
To keep fighting
And I'm working on that
But am still trying to find
My magical drive
That makes me keep fighting
Keep going
Keep recovering
in hopes of one day being just fine.

Frustrated

2009-06-19T07:14:00.000-07:00

Maybe if I just push harder
This will all go away...
It's been working over the years
But I'm in a setback, today.

I hate having time to think
And missing my first life
Or perhaps its that I miss the perceived freedom
that I once took for granted...

Maybe if I just keep fighting
Keep denying
I can pick up where my dreams left off.

I will Always Be

2009-06-19T07:09:00.000-07:00

I will Always Be
The sweet, tough EMT
The driven, motivated lady
Determined to succeed.

I will Always Be
still dreaming of the day
When all the pain will disappear
And I will be OK.

I will always identify myself
As calm and unafraid
I will always set my goals
Higher every day...

I will always put on my "tough face,"
And be calm throughout the storm
As I fix things and make them right
My heart will be strong.

I will always get through any obstacle thrown my way
But I will never lose my unrelenting,
Perhaps unrealistic hope....
That one day things will be the way they were
I will be were I want to be...
But until then I take small steps
And focus on day-to-day
Serenity.

BLAH!

2009-06-15T19:32:00.001-07:00

BLAH! I am trying to get some sleep now. Hate feeling under the weather....fatigue has been bad (though I managed to get in a few minutes on my bike!) and my temp has been staying between 99-100, third freakin' nosebleed of the day......I got out of work as fast as I could so I could rest today, I think I will do the same tomorrow....I've been running ragged. on top of working to the point of exhaustion all last week, I got my steroid injections done in my mid back, which has helped my pain a LOT, and my breathing a bit, but now I just got to get through feeling ucky FROM the steroids....it is ALwAYS worth it because they help so much, but the side effects the first week or two are never boring..... :P

I just balance my complaining with the fact that I am thankful that I am doing as well as I am even if I am in a rough patch right now, and i have good doctors who help me stay healthy, that is more than many folks in the world, have. At the end of the day, I am doing ok, I'm just dis-comforted right now. ;)
C

Needing a vacation

2009-06-15T18:46:00.000-07:00

I need a vacation....why does my brain like to remember the things I'd like to forget, but forgets the things I'd like to remember?

Ok, maybe I'm in a mood tonight, but I do get frustrated some times. I know that with memory, it's easier to recall things that have a strong emotional link, unfortunately, a lot of BAD things have a Strong link, and stuff that is pleasant, well, it's just pleasant...takes more work to pull up....

But, anyways, I made the error of devlving too deeply into the past for a bit this evening....

Doesn't help that I feel ill, I've had a little temperature for a while, I just got my steroid injections done, my breathing is still tight, in general, I am uncomfortable and out of it....but, whatever, I am too BLEEPING tired for all this crap

Gnite!

Rethinking my June 13 2009 post

2009-06-15T18:02:00.000-07:00

Never a dull moment. Well, actually, a dull moment is what had me following random links online until I found an interesting site.....

http://ballastexistenz.autistics.org/

Fascinating lady with some very interesting insight.

And here I go, about to make an idiot of myself and bare my soul.

I was reading through her section on institutionalization. Having been in that experience once, for a week, I can relate a bit, it took me a while to come out of the brain washing...when I got out, I became notorious for hiding in my room at my friend's house.....my friend had to remind me I didn't need to ask to get a bottle of gatorade from the kitchen....I don't think I was so reclusive before then, perhaps? But, I remember the things that sucked: figuring out the rules, for example. Thankfully, I'm smart and learn quick, and was armed with a nearly completed degree in psychology, so I could figure out when they were doing 'behavioral mod' techniques.

But, for someone with a more severe cognitive issue, they could have been there WAY longer than they needed to, or someone with difficulties with social interaction, it would have been a nightmare.

I never read their rule book until about a year later. Yes, they handed me a big ol' photocopied booklet. But, remember, I use certain adaptations to read/process material in that format. I can sometimes get reading a good book like anyone else and just suck up every word, quick, like I did as a kid. But, I have to be in the right mindset, and it has to be REALLY, ReALLY appealing. I don't read as much as I used to, for several reasons, and technical/rule book stuff in particular is problematic.

I have some vision issues and processing issues that make a larger font size desireable. I have problems reading typed/written text--if it is complicated/complex, I have to cover everything but the line I am looking at and read one line at a time. Some medications make this worse.

So, now take someone who is in a bad place and not focused emotionally, plus has a disability, and medicate the heck out of them (glad for that though, I didn't want to have full awareness of the ER visit or the hospitalization;) and throw a big rule book at them. Good luck. Mental health units are not good for folks with disabilities. I mean, I'm glad I am alive, I AM SOOOOO GLAD I am ALIVE! But the experience tends to be far more unpleasant than it needs to be, and it still mimics "One flew over the coocoo's nest." You don't go to a psych hospital to get better or get rest, you go to get stabilized because if you don't you'll probably die, you get some pills, but you don't learn how to be healthy. The best thing that happened to me afterwards was my insurance company refused to pay for "partial care/day program." Thank HEAVEN. I think that would have only made me so much worse, i've been in those places after the fact as a professional advocate, and the staff and their passive-aggressive behavior is anything but therapeutic, yet these 'manipulative' 'caregivers' hold all the cards. I was so lucky. Besides, I needed my meds fixed, I got that, I hid in my room at my family and friends houses for a few weeks while I worked to come out from under the oppressive institutionalized behavior, then went back to college and resumed my life and became, quite frankly, a success, rather than languishing in some program that didn't even cater to MY needs, I have a brain injury and I need rehab, meds, and counseling SPECIFIC to that! believe me, some geniuses tried treating me for a while with disregard of the head injury. BAD move, it cost me several years of recovery, not to mention health and happiness and damaged many of my relationships with people that have thankfully healed and only become stronger, but what a way to go about it.

I knew enough from working as an EMT and my degree in psych to play along. I screwed up the first night because they pissed me off so bad I went and screamed in my pillow and almost got my ass hauled off for letting off some steam in a non-harmful manner, i.e., screaming into a pillow, but that is "not allowed," as the nurse told me...I never looked at her, she asked if I screamed, I could hear her entourage of people who will tackle you standing in the hallway behind her, so I did the best thing I could, I said, "No." Wasn't me! Well, one must learn on the fly, and if you can't read the rule book, you better learn fast from any mistakes....

There were some good things they caught, like that I had blood sugar issues that made me agitated in the evenings if i didn't have a snack...psych meds can cause that. Snack solves all. But so does having the nurse give you your afternoon meds, WHEN YOU REPEATEDLY ASK FOR IT AND THEY KEEP PUTTING IT OFF.

The boredom is horrible. That is probably the worst part, that and being denied the right to see my friends. That still breaks my heart. I got to see my parents, and am SO GRATEFUL for their loving support, but I never got to see my friends who had held my hand through so many crises and who are a crucial part of my support network. They were turned away at the door. I need to write up a mental health proxy thing one of these days, stating that no one, not doctors, not family members, no one has the right to deny me a visit from my friends.

The denial of the social supports--ie a visit from my friends--was devestating. That is the part that still makes me cry. While not everyone loves my friends, I love them, and they love me. That's why we are friends. I don't like all my friend's friends, or all of my family member's friends. But, if they wanted to see someone, I would not deny them that right. That is the point where I felt the greatest loss of control. I remind myself now, it is the past, because it is. Instead, I need to focus on my "action plan," of creating a legal document stating ALL Of my wishes. I had post-op anxiety, I needed surgery, but woke up freaking out. I am terrified of having surgery again because I am afraid of waking up nutty and going to one of those places, again.

I was only in one of those places, for a week, once. It was from a medication reaction/post-op anxiety incident. And yet, it is still so unpleasant that I seldom talk about my emotions surrounding it. This is the first time I have actually expressed that aspect. The boredom truly awful, the lack of autonomy and the limiting of time with my family who are a crucial support network, and denial of a visit from my friends , also a crucial support network, makes one feel so VERY alone in the world. But, that makes you have to become more pathetic and kiss the staff's asses until such time as you are not better, but have gotten the smarts to play their game--THAT is the definition of recovery in those places, not true "Recovery," but having the mental awareness and acuity to follow the game and play along....I left with this mindset that all 'mental health' is learning what the norms of a culture are, and looking at them as a set of rules, and just not breaking the rules....I also left more close-minded in some ways, and afraid.

I don't know where to go from here, other than to say, "There, but for fortune, go you or I....." when I think of where my life could have gone if I'd wound up in a day program, being "labled" as "incapable" of navigating myself and my emotions, I am terrified. but, I don't focus on the fear, I focus on the fact that, for some fortunate reason, that was not my path, instead, I had family and friends and, lets be realistic, the finances to get the best possible care, get back to school, and get my life together and keep working to heal. Other people wind up stagnating when they do not need to, trapped in a diagnostic lable that is enforced, usually three times per week, by a 'day program.' Do some folks benefit? Maybe, I don't know enough about the statistics, thankfully, but I do know something about quality of life, and I know that when people are separated from, and isolated from, the rest of society and their support networks, by some paternalistic entity, the results leave much to be desired in healing and the human heart.....

I thank my lucky stars...but the fear that never leaves me following that incident, remains: My biggest fear is finding myself in a position where I am considered unable to have an opinion and where I do not have a choice. This is where I get agitated, who wouldn't, feeling that no one is listening....that I have no control, no say. I think that that is a fear that we all have, as part of our human nature, however, when one gets a glimpse of the reality that can come to be if that fear is realized, one realizes what a terrifying prospect that truly is.

Don't get me wrong, the hospital I went to was one of the best in the area....but....if that is the best we've got, something truly needs to change.

On Insight

2009-06-13T19:11:00.000-07:00

I was reading a blog written by another individual with mTBI. See link here:

http://brokenbrilliant.wordpress.com/2009/04/19/a-tbi-toolkit-for-you-doctor/

I think the thing that is so amazing with mTBI is that one must become an astute observer of oneself and the world around them.

Reading the above blog got me thinking...individuals with mTBI must learn to navigate their internal environments as well as the complex, external social environments, and have a heightened sense of awareness of self and situation, in order to navigate life on a daily basis. This is not a bad thing...I am finding that it is possible to have a greater grasp of oneself and ones spectrum of mood and emotions and affect than those without mTBI may ever develop! We have to learn to say, "THIS is my disability," when it is, in fact our disability acting up, and to differentiate, "THIS is me, being pissed at my boss, my situation in life, that dude at the other end of the bar, etc." It is an intricate, ongoing learning process. Sometimes, disability and true mental state can overlap, and then one needs to think, "Am I overreacting?" It helps to have family and friends who you can say, "What do you think the real risk is, here? How would you handle this?" Even if what they recommend is not what you would do, the fact is, it serves as a barometer. If a bunch of folks tell you "worry," maybe you should. If a bunch of folks say, "it's ok," it may well be. Always listen to your gut, but also know that if your thoughts are spinning out of control, it's time to check in with other people's reality.

Remember, "reality" is a general consensus of opinion, but sometimes it is good to check in with other folks opinions to figure out where your reaction fits in the scheme of things.

However, the end result is so much personal growth and insight that most folks who do not have mTBI and can regulate things 'on the fly' will never know...I've learned to name and explain my moods and emotions and confusions....a very wonderful lady who works in the Independent Living movement told me, it's all about communication, and that that had always been my problem post TBI. She was right. I find that when I tell others, "Today I feel (fill in the blank), it is not your fault, I am just tired/meds aren't working/etc.etc.etc.)" people tend to respond positively. I try to get people who do NOT have mTBI to make it a point to share the above, since so many conflicts with others are based solely on miscommunication and misinterpretation.

And yes, that is something I learned throughout my journey, that if someone says something that makes you smart, TALK with them about it, find out what they meant, before jumping down their throat and assuming the worst. I used to do that ALL the TIME. And then, as I learned to open those lines of dialogue on a whole new level, I noticed that it is something that folks WITHOUT mTBI never learn to do! And then, people just "assume" they knew what so-and-so meant when they said such-and-such....and on the basis of those assumtions, react.

It's easier to prevent a problem by making the effort to speak and clarify things in the first place, than it is to sort thru a mess later. ;)

Funny thing is, if most people learned to use the tools and insight that folks with mTBI learn and/or receive some coaching on, if they are lucky, a lot of heartache could be avoided because people would realize just how inaccurate it is to attempt to 'read' what is going on in someone Else's head/reality on the basis of a remark.

Well, enough rambling, good nite!

Finding Meaning

2009-05-17T07:40:00.000-07:00

I was reading through my old writings and posts on my two blogs. The thing I like about blogging, is, it shows the journey. It's like a diary, but perhaps more daring in that one KNOWS it can be found by anyone. For me, it is cathartic, but also a means of saying to the world, THIS is me, I am me, I am strong, and I don't care what anyone else thinks, here's my soul, if you can't handle it, you can navigate away from this page. ;)

I have perhaps too much time to reflect on days like this, where I actually am resting--these days have thankfully become farther apart--and trying to keep my mind busy lest it go off on a trip of it's own while I'm trying to sit here and let the physical stuff simmer down a bit. So, I reflect, though I've learned not to traverse too deeply into the past.

Psychology will tell us that every time we recall an event, a memory, we process it a bit differently. We look at the context somewhat differently, and re frame events in our lives, in essence. The event does not change, but the context and our interpretation, does. Perhaps this is healing, when one can reflect, but not too deeply, and truly bring in a positive context to life experiences that on the surface, seemed devastating and impassible.

The amazing thing about life can be summed up by, "First there is a mountain, than there is no mountain, then there is." When faced with an obstacle, it may first seem insurmountable. But, taking just one step a day, even if it is just brushing your teeth one morning when you don't want to get out of bed, puts you one step farther up the mountain. As long as you keep living, and keep taking one tiny step a day, you will find yourself on top of the mountain, the mountain will have vanished beneath you, and you can pause for a moment to take in the view, and reflect on the journey to surpass what previously seemed impassible.

Then, life continues on. You walk down from the peak and resume day to day life, and sometimes, when you pause to reflect, and you look over your shoulder, you see the mountain behind you, but now, you are looking at the side you walked down. Your perspective of the mountain has changed, from the craggy, impassible thing you needed to scramble over, to your pause at the top to realize, "I got to the summit!" to the walk down the other side and on with your life, to that occasional moment where you look back at the path you've traveled so far, and you see the mountain in the distance, and know you successfully traversed that mountain.

Somehow, that gives one strength, knowing that throughout life, there will be mountains, but if you just keep living, take tiny steps, you will make it to the summit, than down the other side, and some day, again, you will be looking over your shoulder, remembering how you never thought you'd make it over that mountain, but you did. Once you reached the summit, perhaps you were exhausted, but the walk down, as things became easier though you still had to step with care, and then the return to level ground, makes it all worth while. The walk downhill can be energizing. However, once you have crossed over the mountain, don't stare at the mountain behind you for too long, in case you trip over a pebble in the current path by walking backwards. ;)

R&R before Monday

2009-05-17T07:14:00.000-07:00

I'm chilling in bed right now, got my laptop, my bed wedge, some Skelaxin, a heat pad, motrin, and a giant pink snail. I had a WONDERFUL time being an 'assistant instructor' yesterday. Today I just need to recuperate before work, tomorrow.

So much for getting housework done! I had all these grandiose ideas of what I was going to accomplish, so far I've accomplished losing my laundry basket?!?!?! I probably left it perched on the rail downstairs. Oops. I'll get that later.

The Amantadine definately worked magic on my muscles, I think it may have helped with my left side and the funky muscles a lot more than I realized--today my left arm is doing that ucky thing where the shoulder joint is kinda pushing the nerve (happens when things are a bit weak and saggy!) and the muscles in my back on the left side are tied in a knot that makes walking a bit tough, and my breathing is tight. My right side, however, other than a little numbness in my right foot if stuff in my back, shifts, is golden, LOL! Of course, with the other unpleasant (vision issues!) side effects that are part and parcel of the Amantadine experience, i don't mind a break. Provigil has it's own interesting effects for me, that impact my speaking and also messes with my fine motor where my hands may shake and I tend to drop things or twitch and send tiny things flying--much to the amusement of my coworkers, at times. OOPS! It actually makes it hard to do laundry and to pick up things, it requires a lot more focus--but it sure helps my level of being awake and alert. Anyways, I am happy to be giving my body a break from Amantadine for a while. I won't mind going back on it at a later date, but for now, Provigil is OK.

I just need to hire a maid for a day. I am seriously thinking that next paycheck, I want to pay someone to clean and organize my room. Right now, I just someone to fold clothes and figure out a way to get things to fit in my closet/drawers and help me sort thru stuff to donate would be AWESOME.

LOL it's funny, I would refer a Senior with my stuff to get a housekeeper. That's what I need, too! I think I'll have to save a little money then hire someone. Don't know if that is actually going to happen, but it would sure be nice!

Have an awesome day!

Fun day helping with training!

2009-05-16T19:26:00.001-07:00

I had a really awesome time assisting in a fire department training program a buddy of mine organized. It was a privilege to help out and the fire department was VERY receptive, plus the guys were a lot of fun to kid around with, I like it when I can get my students laughing as well as learning. I am so glad I got my GPS, I really, really am. I'm getting more comfortable with using it and it does expand my ability to go places and get around--I like how it recalculates when you make a wrong turn, and coaches you through it. I have to take a 'team approach' to it, as I know that certain areas are 'bad,' or that certain routes have more traffic...but overall it is a good tool, though one should have good 'backup' plans **and maps!** in place.

Soooooooooo, I really ENJOYED my drive this morning, it was 1.5 hrs, the most I have driven in a very long time. I got up early, got a shower, took my meds early, and left the house feeling VERY good and fresh and very alert, and other than needing to watch my sugar a little better on a day like that where I am expending more energy, etc., I didn't have any problems--though I made sure to premedicate before teaching since the sciatica on my left side's been acting up. I had a GREAT time teaching, the drive was lovely, on the way home, I met my sweety for a snack and some coffee at a Ruby Tuesday's near Hamilton as he was coming up the TPK while I was coming down Rt. 29, so we met on Rt. 130 off the 195 exit and exchanged stories about the trainings we attended before heading out to do our errands and drive home.

It was such a nice, normal day. I am very thankful for it being a 'normal' day, and being able to do something a 26 year old SHOULD be capable of, get up early, hit the road for a drive to do something enjoyable on a day off. Not to mention, I love to teach, and I love to be around the guys and gals who run these programs--they are good people, and fun, too!

I got home around 4, and went to change into some comfy clothes and take a nap...I got as far as losing the uniform shirt, and thought, hey, I'll close my eyes for a minute, I'm beat. Somewheres around 7:30 I woke up again. ooops! ;)

Well, I got to go sleep now, tomorrow I need to unload, and CLEAN, my poor car. It got repaired, now it needs to be scrubbed inside and out. I think next paycheck I'll get the seats shampooed, and then after that, invest in some good seat covers, because the one thing with the gray clothe seats in my PT cruiser is that they get gross, EASY.
Gnite!

Take 2

2009-05-10T08:48:00.001-07:00

I tried to go to church today
But they took away my chair...I tried to go and pray today
But there was nothing there...

There was no room at the Inn...I don't want to be one of them.

I tried to go to Mass today

2009-05-10T08:40:00.000-07:00

I tried to go to church today
But they took away my chair...
I tried to go and pray today
But there was nothing there...

There was no room at the Inn
They took away my chair.

A Walk in the Woods

2009-05-09T19:57:00.001-07:00

A walk in the woods
With a dear friend by my side
Finding serenity
Green leaves
A frog
The fullness of Spring
Birds kicking leaves for a Bug Buffet

Finding I am stronger
And healthier
Than I've been in years!
My Certain Someone by my side
I feel safer with you there--
Plus the added pair of eyes
More miracles to share
Funny trees
Bright green bug
That didn't fly too well!

It's been years since I walked there--
Thank you for inspiring me
To start to live again...
Thank you for being you, being active
Making sure I don't get too tired or have a problem
Yet making sure I push the limits
Try something new,
Go for a walk,
Take a little chance that proves
That I can live again.

I remember now how I used to run off
Into the woods, even alone
To think, to meditate and recharge
To marvel.

My dreams seemed closer
As we walked together today
The trails I want to walk down
Seemed nearer
The switchbacks, not so steep.

With you by my side
I know
That we will walk together
As long as we can
And strive to enjoy
Each moment.

Your impersonation of why tick signs
Were posted on one side of the road but not on the other
Dog ticks versus Deer ticks
In a "West Side Story" fashion...
I love the way you personify
What you see around you
And the way you bring me out of my shell
To be the woman I am
who went into a quiet hiding for a few years
While I got wrapped up in finishing college,
Wrapped up in trying to get well,
So wrapped up that I forgot the things I enjoyed...
Thank you
For reminding me of who I am
And for sharing who you are with me.

Whether we are enjoying
A brain storm
or a rain storm outside the window
Or a walk
Or kayaking around a lake,
or planning another adventure...
It is good to have my best friend
by my side
As we grow together and create our own life, our own story.

A dinner we share with dearest friends,
Realizing things turn out well in the end
Realizing the terrain, though steep at times
Is easier with companionship and a laugh and
A funny positive outlook
And a plan to approach challenges...

We'll get there.

Today we got to walk the length of the trail....together, and to make memories
And experience
watching a frog who thought we couldn't see him,
Watching ants duking it out,
Watching a green, boxy bug try to get airborn...sort of....

The time we saw the beaver swimming last summer....

Thank you, for being in my life,
for the walk in the woods....I pray to the Heavens in thanks
that you are in my life....for the paths of life we walk together I rejoice, for the paths we will walk together, I rejoice....and if the Heavens call one of us home long before the other, I know that even for the one still walking the trial, knowing that the other is standing at the top of the mountain
Will make the climb that much sweeter.

A walk in the woods....a journey together...as I learn to live again, I love how our lives become more intertwined, and we make new stories to share.

Changing Dreams and Forgetfulness

2009-04-28T19:50:00.000-07:00

It is fascinating how dreams and ideals change over the course of a lifespan. Today, I managed to successfully log into a website I haven't been on in years, where I used to post my blogs, and got some insight into what my goals and dreams were a few years ago. It all seemed so foreign to me! I forgot about some of the stuff that I want to do, and where I thought my life was heading five years ago.

But my life has certainly changed for the better. Lately, I've been having some difficulty keeping my nose above water and getting ahead, but I am trying. I remind myself that ALL of this is leading somewheres and ultimately, there will be something good wrapped up in any difficulties and it is crucial to count blessings and make the best of it.

I am happy and blessed that I am going to work every day, and getting things done. I am still learning my job, as there are dynamic circumstances that can change rapidly, and I deal with a wide range of folks. I am blessed I have a job.

My current difficulty is the 'brain fog' which clouds my mind in the afternoons through evenings, and the not-yet-resolved vision issues, which, while somewhat improved, are still an issue. The brain fog is 'killer' since there is a lot I'd like to be getting done. And sometimes I just get a little tangential, though I always have. ;) My Rehab person recommended a shower chair since I've had some difficulties with "ADLS" (Activities of Daily Living) because since my fatigue/fog has been exacerbated lately it has been tough to stand in the shower long enough to get a satisfying shower.

But, I can't say its a surprise that I'm a little foggy considering how much I've been doing lately at my job and I've been putting in longer hours and changing medications: I'm just delighted that I have a Patient Boss who is excellent, and that I'm still hanging in there and doing my best to help others.

Dreams change and evolve, and it is funny how one can forget what one's goals and dreams once were as new dreams and opportunities take hold. My dreams, now, involve getting a Master's Degree in public health, getting an even better job several years from now once I'm done with a Master's Degree, and then getting married and having my own home. What can I say, I'm into that whole 'pair bonding' thing.

Well, I'm exhausted and tomorrow will be another interesting day full of new learning and new situations and challenges. I may be frustrated that it has gotten harder to go out after work, but I am thankful that I CAN work and I have a job!! Hey, if I can make enough money, i can pay someone to drive me where ever I want to go even on the days I AM really tired. ;P

Take Care!

Nice, Normal life. ;)

2009-04-26T18:39:00.000-07:00

Had a wonderful weekend, spent it down in South Jersey with my friends, got to go to a show at the Borgata, wandered around Smithville and bought my favorite coffees.....Got my latest MRI back and it has stayed NORMAL :) that means, no late onset types of stuff going on, ALWAYS A GOOD THING.

That's the paradox of mTBI, a lot of our standard MRI's are normal. There is damage at a microscopic level, that doesn't show up on a regular MRI. The frustrating part is, when someone is struggling with a mild brain injury, and a test says everything is "normal," it sends a screwed up message. If my MRI is "normal," why am I not ok? And then, for me, I get back into the mode I always do....denial denial denial maybe it's all in my head etc. for a few hours, and then I do research.

There's a newer type of imaging out there, something called DTI, and if an MRI has the software for it, it can image stuff that a standard MRI misses....including the at times elusive shearing of brain cells that happens with a mild traumatic brain injury. While I have documentation of mTBI up the wazoo in the form of neuropsych evals, etc., I wouldn't mind having a DTI imaging study done because then I'll have the one thing I've never had all these years, an image I can hold in my hands and say, wow, that really happened. Because none of it seems real. But, perhaps that is why I am doing so well. ;)

But, it could be nice closure and validation.

Validation seems to be a common theme when someone is faced with a life altering, but hidden, diagnosis. Can I live without something that I would consider 'tangible?' absolutely, because it means that things were just that, a mild injury with a much better long term (across the lifespan) prognosis. But, there is something about 'proof' that justifies one's experiences which otherwise often defy comprehension.

Sorry, reading over test results opens such a Pandora's Box of emotions for me: Relief is the first and biggest, followed by confusion and the inevitable search for meaning.

Such is the human experience. ;)

I'm getting better every day, life is VERY good.

GPS Adventures, Amantadine, Etc. :)

2009-04-25T05:28:00.000-07:00

Well, I am down in South Jersey this weekend, taking a mini vacation and enjoying the company of many of my dear friends. It is amazing that there is actually RUSH HOUR now in this neck of the woods. That used to be a foreign concept a few years ago!

I know my way around here just fine, spent many, many hours riding around in an ambulance as a volunteer in one town, and then later zipping around in my Jeep while in college. But, just for fun, I decided to see what my GPS thinks is the best route around town.

Listening to that darn thing and trusting it's turn by turn directions turned into a misadventure in Mercer County the other day....Turns out there are two streets with the same name in two very different parts of town, and I missed the first half of a meeting I was supposed to be in! But, after dumping me across town, I "rerouted" it and found my way back to an office I do some volunteer work at, where I talked to one or two folks, and mapquested (and mapped!) my path to the meeting I needed to get to.

But, overall, it is an OK tool, I like the fact that it provides reminders for us busy folks whose brains are going a million miles a minute, thinking of what we need to do today....reminding us that our freeway exit is coming up, before we wind up on the other side of the state! ;)

***

I am finally off of Amantadine. I switched on to Provigil, which I was on years ago for fatigue. It does not help my muscle weakness the way Amantadine did, but I figured that my body needed a break, and after being on it for two years, the Amantadine just wasn't working as good as it used to. I am still waiting for my vision to get better, Amantadine causes blurry vision, but my eyes do seem a bit better and I am going to English Creek to pick up my new glasses, soon.
****

Well, I gots to run for now and get some more COFFEE!
Will keep you posted on my GPS (mis) Adventures.
:)

Assistive Technology

2009-04-18T21:19:00.000-07:00

Today I finally did it.....I bought a GPS! I got my tax rebate, and decided, I lose too much time some days taking "detours." I was reluctant to get one for YEARS, because people talk about the problem of getting dependant on the GPS. But I got lost going to the freakin' abilities expo and thought, that's it! I mean, I've gotten lost a number of times going to cognitive rehab....!!!

Now, there are some problems with GPS units. GPS units don't know if they are sending you into a "bad" neighborhood, or less safe route (My GPS unit brought me right through 2 traffic circles in the first 20 minutes.) And if it craps out, you'd better have a map in your glove box and KNOW how to use it, and still have some idea of how to get home.

But, it should be helpful. It recalculates when you go off route, deliberately or otherwise. Mine should recalculate towards the nearest Dunkin Donuts if I make too many wrong turns. ;)

More to follow soon!

Changing the Title

2009-01-19T09:54:00.001-08:00

"The Writings, Ramblings, and Attempts at Art of a young, now disabled (in the line of duty with no recognition or compensation in sight) former Emergency Medical Technician-Basic."

Well, I must say, I think I have evolved beyond the quote above, which has occupied the title of this blog for years. I don't know what to replace it with. Perhaps I am still a little quixotic, tilling at windmills....but it is tempered now with greater life experience.

My brain is fried this week. My brain has been fried for a while, but I've been keeping a lid on it. However, I've gotten to the point where I need a vacation from "Irving." "Irving" is what my friends and I named the obsessive-compulsive corner of my brain that came into swing full force following a certain mild TBI. In some ways, "Irving" is perhaps my biggest challenge/disability at this point.

I got down to a low 50 mg of Zoloft for a SHORT time. I had titrated down very gradually, I was hoping that by lowering my antidepressant I would a). lose some weight, and b). not be so darn dependent on the stuff. Yeah, that didn't go too well. Too many Boogey men. So I went back up to 75 mg., and started to find myself thinking a little clearer, realizing that things are not as bad as the chaotic spin that "Irving" applies to them. But, still, I'm tired of contending with the onslaught of nightmares that start before I'm asleep--this too, has been a staple of my TBI experience: I spent years being afraid of the sun going down, because as I grew more tired, and my brain was fatigued and less able to regulate what it would throw at me, the anxiety, and scary mental images, become unbearable. I wonder if this is what folks with Alzheimer's are experiencing when they start "sun downing," this apparently primitive response as the tired brain can no longer 'filter' the internal and external world as efficiently. The anxiety can be overwhelming, and the very concept of nighttime and having to go to sleep, becomes terrifying.

So, in order to get more quality hours out of the day, and decrease the anxiety, and reduce the 'magnification' that I tend to look at the world, through, I decided to go back up to 100 mg of zoloft. Suffice it to say, my fatigue has been worse, my vision, more blurry than usual. I feel like I am in a fog, but, by the same token, right now I'm too tired to really worry about anything.....In a few weeks, though, I hope that this will pay off, and that I will be more focused, not stopping my day or whatever I am working on to negate some 'bad' thought. I have a lot to do!

Now that my physical effects of TBI are pretty well controlled with medication and exercise, I am stuck dealing more with the emotional/mental aspects, which are, in my opinion, just as disabling, perhaps moreso as it is harder to see and navigate.

I watch the manifestation of some of the "OCD" tendencies in people around me, I hear them talk to themselves in an effort to reassure themselves that things are OK, I see them stop walking to stare into space while generating a thought pattern that will negate whatever horror their brain just threw at them. I know how those thoughts and images often involve bad things happening to people close to us, that way, we get the most anxious and upset. The fear of a stranger getting hit by a bus is not nearly as devastating as the fear of one's family member or friend getting hit by a bus. *Insert thought patter to negate that last mental image here.*

I watch family members and friends whose symptomology I recognize as I face it daily, too. I always had some OCD tendencies, but I was able to control and manage those tendencies, until I had the head injury. There is a theory that people with OCD tend to be smart, and think 'too much,' as there is actually more grey matter in the frontal areas of the brain. Suddenly, that filter that kept those tendencies an often useful, focused entety, were gone. "Irving" got run of the place. I could no longer channel that focus, that drive, in the ways I needed to instead, it manifested in scary images and anxiety and warped thought processes.

I feel for the family members and friends who I see manifesting the symptoms of OCD, watch it take hours out of their days and lives, and know that they are suffering, and far more than they need to, out of fear of some stigma or reluctance to seek help for whatever reason, perhaps the fear of being labeled. I've only just begun to gain awareness of how much OCD can impact relationships with others and at times cause us to distance ourselves from others in an attempt to protect ourselves/them from whatever horrors our brains like to throw out there. It gets to be a lonely world.

But, friends can be the best allies, people who you can ask if what you are preceiving is actually real, or if you are just worrying too much and looking at things under a microscope. And friends are fun, and everyone serves as a distraction from day to day life for one another, and life is richer and fuller with people around and new and varied experiences.

OCD limits life and experiences. I wish that everyone who feels its impact and is distresesd by it in some area of their life, would seek help and learn to identify it and get to know their "Irving" and ways of managing it. People distressed by these symptoms are truly suffering. Mental pain is real, but there is help and hope and ways to alleviate that suffering constructively, rather than turning to self-medicating with alcohol or other self-destructive behavior, in an attempt to gain a few hour's peace.

So maybe this just disturbed/pissed off the reader. But if so, it's time to ask yourself, "Why." This blog is aimed at no particular person or persons. Rather, I want anyone to know that help is available, and if you are suffering, you don't need to be trying to manage some misfiring neurons on your own. :)

Compensate this. :)

2009-01-02T17:15:00.000-08:00

Well, I know this has been a long time coming, but MAN I must have been feeling sorry for myself when I made the quote about no compensation in sight in the title of this blog. :)

I'm starting to realize that legal and financial compensation may be nice, useful things that when it is proper, is deserved. However, I'm learning to view 'compensation' in a very different light.

I had the head injury when I was 18. In effect, my entire adult life has been, and will be who I am post-injury. And you know what? It's not bad. I've learned that I am "compensated" for my experiences in other ways. I have learned a bit about empathy, I've learned a lot about communicating effectively with others. I've based my college career on the changes that I've been navigating, and what I've been navigating has become my system of guidance.

My goal of going to graduate school for a degree in Public Health has been borne out of my experiences. Under the guidance of some wonderful people I've become aquainted with through the Centers for Independent Living, I've become involved in Emergency Preparedness. While I have my "day job" of service coordination, there is some overlap in that I am responsible for drafting a disaster plan for the senior housing projects I work at. Ultimately, I would like to be working full time in some public health/emergency preparedness roll. Emergency preparedness has become my passion. There is such a need for the involvement of, and preparedness for, members of the special needs community. I'm getting addicted to being involved!
More soon. :)

2008-04-24T12:45:00.000-07:00

HA! I am writing this in PINK. That is because I am HAPPY, and I want to overhaul this blog. At this point in my life, some of it really is not current. I think I need to change the title, and the focus here. I'm not so angry at life anymore, not so focused on what is unfair and what c0uld have been/could have been different.

I'm working, albeit part time, but I have time to work on writing cirriculum for EMTS on special considerations for the care of patients with disabilities. I am very excited about this topic (which is very complex!) because it is challenging, interesting, and incorporates both my professional and personal experiences into a meaningful whole that will hopefully improve people's lives.

I'm in love with a wonderful man, who accepts me just the way I am. Yes, he's 23 years older than I am, and I wouldn't take a day away from that number, given the choice, because those added years of life and experience help to make him the person who he is today. Do I worry about what our lives will be like in, say, 2 decades? Absolutely. But, when one sits and factors everything in, is the 'perceived risk' worth it? Absolutely. None of us know what our situation, and our health, will be like from one day to the next. Why miss out on love because of things that 'might' happen? So maybe we will have fewer 'active' decades together than folks in the same age group. But, lets face it, I'm achy a lot anyways, and I can't do everything some 25 year olds can, so it all balances out. :)

A Rant About Medications and Compliance and New Information, etc. etc. etc.

2008-02-21T08:50:00.000-08:00

All right, so I am sitting here doing research which pertains to my line of work. I ordered some updated publications on the treatment of various forms of mental illness, and reading over information about the black box warnings on certain antidepressants. There are now black box warnings for antidepressants for individuals up to age 25, urging caution and close monitorning of younger folks on these meds.

Gee, how long did it take them to figure out that out?!!?! How many kids and young adults offing themselves/attempting to/does it take for someone to get a F^*%ing clue?

I am BY NO MEANS against antidepressants. Quite frankly, I think they are AWESOME, and can allow folks, self included, to have a more normal, improved quality of life. However, I know all too well about people such as (here goes my baggage) nurse practitioners or PCP's for example, handing out these meds haphazardly. When used without great care, the effects of the drug can be worse than the disease it is treating.

For example, try becoming somewhat psychotic while being treated with Wellbutrin several years ago, as a 19 year old, and having the nurse practitioner in charge of your care think that increasing the dose will relieve those new symptoms that started in the first few weeks of treatment with Wellbutrin....then when things get worse, you are given a choice of adding Paxil, or Risperdal, an antipsychotic......and the underlying cause was the Wellbutrin. I went with adding the Paxil, which helped a bit, but how ridiculous is it when healthcare providers cannot figure that there MIGHT BE A CORRELATION between addition of a medication and new symptoms.... Got off of that, things dramatically improved....

The kicker was, I had asked said nurse practitioner in one of my lucid days, if it was possible I had TBI as a result of the accident I was in. I was dealing with not only depression and anxiety, but debilitating weakness and fatigue and physical pain. She said it didn't matter, the treatment would be the same.....

WRONG ANSWER!!!!

Wellbutrin, for starts, is contraindicated for folks with TBI. It lowers the seizure threshold, and can cause agitation....not good when coupled with Frontal Lobe Dysfunction resulting from TBI. Incidentally,after years of being strung along by that woman, I was correctly diagnosed, with TBI. The treatment is very, very different. I got away from her, got a neurologist, and got cognitive rehab, and guess what, I started to get better. No more thoughts from my therapist about putting me in a group home.

I've graduated college, I work, I have a damn good life. Yeah, I'm not rich, because I have medical expenses up the wazoo, and cannot work full time due to fatigue, but if you told me six years ago that I'd be doing this well, I'd never have believed you.

So, in conclusion of this rant, YOU KNOW YOUR BODY BEST. If something is not working for you, advocate for yourself. Tell your doctor. Lay it on the line with them. If things don't change, go to someone else. Keep fighting to get the best possible quality of life. It's your life, find someone who is willing to help you live it fully.

Beautiful Again

2008-01-03T13:10:00.001-08:00

It is funny how
One tends
To look in the mirror and only see
Those things that seem
Deficiencies.

I hate my weight
Though I am getting thinner
I hate my meds
Though they help me live
I am embarrased at my scars
And stretch marks--
The Cost of Living
is written on my skin.

But then, some Angel comes along
And tells you you are beautiful,
And sees your inner beauty
And likes you with your shortfalls.

Forgetfulness can be ignored
Or comforted away
Frequent malaise
Can be acknowledged
Yet lived with anyways.

A year ago, I never thought
I'd feel beautiful again--
I'd look in the mirror, and think,
I'm a monster!
I did not recognize the face in the mirror
I could not see myself in a picture
That isn't me! I'd try to pretend
That because the medicine made me feel good
I could deal with feeling ugly
But eventually that rots at your soul
And you think,
No One can love me.

Then, one day, a friend or two
Comments that you are sweet
Notices when you've dropped a few pounds
And helps get you back on your feet.
They never judged when you were overweight,
And told you you were still pretty
And complimented you and not condemned you
And made life a bit more worth living.
Once I began to feel beautiful again
My heart started to soar!

And to these friends, I am grateful
Especially for the days when I told you
What really was my weight,
And you said, "No way, you carry it well!"
And a smile could still come to my face.

Thank you for understanding, and not judging me.
Thank you for helping to heal
The scars you both can and cannot see.

Thank you for kissing my face and holding me when I cried in my sleep
Thank you for helping me smile again
And sweeping me off of my feet.

Thank you for understanding on those days my legs went weak
And for using that as an excuse to rest your head against my cheek.

Thank you for not pointing out my clumsiness and instead
Letting it go, and helping to fix
Whatever I dropped on the floor
Thank you for accepting me
Unconditionally
You opened your heart
And let me walk in
As you held the door

and suddenly I'm learning to see
What it is, perhaps that you never lost sight of
Even when I lost sight of it within...

Through your kindness, I'm beginning to see
I am beautiful,
again.

Welcoming 2008 & Reflections on 2007

2008-01-03T13:08:00.001-08:00

Happy 2008!

I spent a few days working on my scrap books when I wasn't feeling all that well earlier this week, and, I must say, 2007 was really a good year for me. Between graduating college, getting a job, and being with my family and friends, and a year with no major surgeries (a few minor things, but those barely count), and a year with no overnight stays in the hospital....I believe that is the first time that that has happened since about 2002!! Finally, measurable progress!

I have a certain friend who reminds me "Time is healing." The body, over time, does heal. That, and now that I have my three reliable healthcare providers, it makes things much easier. I've gotten more experienced with how to manage the little day-to-day crises, and have learned to ask family and friends for help when I need it, even if it is just to have someone carry something for me on a day my back is out.

I can honestly say I am pretty content, overall, right now.

I am done with college. I am working. I got through a whole year without any hospitalizations for anything, and no major surgeries. Today my neurologist was happy to see that my list of medications has gotten shorter. It's taken a lot of work, and a good deal of time, and will still take more time, but, there are changes, for the better. I can deal with that. ;)

Happy 2008 and the best to all of you!

On Medications

2007-12-21T19:31:00.000-08:00

I must drive my neurologist nuts, either that or he's just used to the way I am after all these years. I react badly to low doseages of 'relatively' safe medications, I develop sensitivity to a drug after years of successful treatment, and I'm not the most compliant person, ever. Reason being, I do my research, and I've learned that when I develop a new problem, it is usually a result of a medication. So then I go on line, and call my pharmacist, and talk to friends with similar problems, or who just have a good deal of common sense, and start to work on my next theory of what to harrass the good man about at my next appointment.

That, and I am still in denial. But, I think it has served me well. Perhaps it is not even so much denial anymore, as the realization that I do have problems, but, I don't want to be medicated too much during the "best" years of my life. Some drugs make a body rather plump, and that makes me hate myself sometimes, and makes people just assume I'm lazy, and they don't realize that the meds that make me fat also give me the best chance at living day to day life with a modicum of success.

And I am stubborn, sweet Heaven am I stubborn. I am determined to be on as few medications as possible and fight with all I've got to manage on a minimum of meds on a daily basis. I got off of three, so far successfully, this year, with a lot of support from my family and friends, who often had to wait out me being a little 'out there/out of it,' or just plain ill. But it is getting easier.

I stopped taking the alzheimers med I was on for years--it was good for me, I had few side effects of note, it helped my memory, kept me on an 'even keel' and helped me with activities of daily living, and took some of the emotional 'edge' off the frontal lobe dysfunction, as well as helping with the sensitivity to light and noise. It was good shit, to put it simply. But, it was one more pill, and, as my friend who had several TBI's in his life said, "Time equals healing." After six years, I figure I am doign better, and it is time to see how much better.

So far it's been an all right experiment, except for a few of the details, which served to give everyone, including myself, a chuckle, after I got over the initial frustration. I got lost on my way to cognitive rehab, for an hour and a half. :P

Heck, that is why I still go to cognitive rehab. ;)

I think, too, that having graduated college has helped me gain some perspective, not to mention, that for my lucky self, I went to a liberal, and supportive school, which HELPED me heal and grow as a person. Otherwise, I don't think I'd be doing nearly as well.

I think I am learning to control my moods and at times, quirky behaviors, better. I've always been quirky, its just some days a little harder to control, because my 'impulse control,' is not as good as it was pre-injury, but it is getting better. I use something I learned in all those years of psych classes, and also something I learned from a dear friend. I ask myself WHY am I doing/feeling something, think of the consequences, try to think of it from a few different angles, and then decide if it is something I should do, or not. It's not always easy, but, I find that I feel more in control by exerting that level of self-control. And goodness knows it is not always easy, like when you want something, or want to do something, RIGHT NOW, and you really have to talk yourself out of it and say, I cannot afford this/this is not a good idea. It takes me longer, I've realized, to think things through, and I'm learning not to just be "re-active," but to think about what I need to do.

"Reading" other people still does not come easily, interpreting their moods or where they are coming from. Apparently, that is a common effect of head trauma. At least now I know it is hard for me to read people, and I do try to look at other folk's perspective, and if I am still not sure, I've found it sometimes helps to ask someone else, or even that person if they are a calm sort, what they are feeling, or what they need. Because goodness knows it can be tough to figure out. But I feel like in the past six months, I am really getting better at that, again.

I still get scared of other people's moods, because to me,it is hard to read, and I don't know whether or not I should feel threatened, and I just want negative situations to de-escalate, since I do still have, and especially now that I am on less meds, something called a "decreased stress tolerance." That one speaks for itself. That's why I like to surround myself with cozy, positive things, places, and people. I like it best when life is relatively serene. Heck, who doesn't? But I tend to over react to the least bit of negativity. For me, it seems like the whole world is coming apart.

While I am getting better with arguing with myself that no, the whole world is not coming apart, I still get terrified. I like it best if someone sits down with me and just converses with me about something that is wrong, and explains, "I was upset because when you said/did this, I felt this. " Very often, I said something I didn't think through, or maybe didn't realize it would affect someone the way it did, and I'd rather talk to you kindly and openly about it. Odds are, I'll want to do anything to make it right, or at least reach a truce.

I do get scared easy, because I'm afraid of losing safety, and serenity, and people around me.

But, I must say, this all makes me love the folks around me, who put up with me, even more. Iknow I change every time my meds change, and I appreciate the elasticity other folks have in dealing with the different aspects of me which emerge when my meds switch around a bit.

So, I don't know what I'll argue about with my neurologist this month, and maybe, since today is a good day, I won't pick his brain, or challenge him on anything. Maybe that can be my holiday gift to him. But he's a great doctor--not because he's never made a mistake treating me (I am a complicated case)--but because he listens, he understands, and he is willing to take risks, and take chances, to give me a better quality of life. He puts up with me ranting about how I don't want to be medicated, but I'm sure he hears it all day long. Sometimes, he tells me it is time to see a shrink again. Then, I usually tell him to get bent. But, we have a working relationship. If I do need 'that' kind of help, I get counseling, or a shrink. I fight to stay on a minimum of meds, but with a maximum quality of life.

He's really good on one thing, too--he has provided me with the medications I need in an emergency, if my chronic stuff flairs up, that can keep me from having to go to the ER for pain management, or not being able to breath good from the muscle spasms from the nerves in my back locking up the muscles in my lower chest wall. Goodness knows the ER doesn't know how to deal wiht shortness of breath from that! They are sooooo clueless!! They look for pulmonary embolisms, etc., etc., instead of listening to the patient, or even looking to see if my chest wall is expanding. (NOTE: THE LOWER HALF WON'T!) But heaven forbid they listen or check. Thankfully, my neurologist knows that the ER doesn't understand these things, and that they can be treated at home sucessfully, until I can get my trigger point injections done.

And he gives me meds that fix the severe migranes that would otherwise require ER visits and unnessecary CT scans because my speech gets slurred and my physical ability and cognition goes down.

So, some meds are good, because they keep me from having to go to the stupid ERs who never really 'get it.'

But, I still get flustered about being my age on being on meds. And, I'd like to be on less. But heck, at least I can split hairs on the matter with my neurologist, and he understands, and helps keep me out of the hospital.

So, this has been a disjointed, and yes, medication-laden rant. That's because my sleep meds did not work tonight, because I'm getting a tolerance, again. I'll talk to my neurologist about that, next month.

Part of the working relationship with a doctor writing your meds, is, you have to be able to argue with them. Civilly, but none the less, you live in your body, they don't. You know if something is not working for you, and they need to be willing to listen, and either tell you to give it a little more time, or to find another option. You have to be a team, and work together. You need to do your homework, and SO DO THEY. After all, they should care about your well being about as much as you do. But you also have to take responsibility for yourself, and TELL THEM if there is a problem. They have to educate you, and take the time to discuss with you, if and why a certain med is or is not working. They have to keep an open mind if you are asking if something else might work better, and if they don't think it will, explain why. After all, they DID go to school for this stuff for years. But, there is nothing wrong with calling something into question. A good doctor will understand that, and will listen to you and your concerns, and either research a matter more, or explain why something may not be a good idea, without getting an attitude with you. They will educate, not embarrass you. That is why I stay with my neurologist, overall. He's gotten me better overall, though we've had some near misses, too, but that was always done with the best of intentions, as I was willing to take a risk to make my life better. OVerall it is working, and he puts up with me asking, which drugs can I get rid of? He's a reasonable fellow. At the end of the day, yeah, it works. He may not be some head of Neurology at some prestigious university, but he works FOR me. He KNOWS my case, and he'll TRY his best. And we work together.

Getting a piece of my life back

2007-12-17T12:57:00.000-08:00

I've been enjoying helping my friend, a paramedic who runs a business that teaches first aid, CPR, etc. I'm doing some work around the office for him. It is nice to be participating with all that in some capacity again, it really feels like I've gotten a big piece of my life that has been missing for a while, back.

It's a nice addition to my life. I have an excellent job I love as an independent living specialist, but suffice it to say, I still miss working in EMS immensly. Its like an old love affair that's hard to get over. But at least now, I get to keep a foot in the door. :)

Love ya, Grandma! GET BETTER SOON! :)

2007-12-17T12:43:00.000-08:00

My grandmother had a stroke on Tuesday, and she is up and around a bit now, and speaking better, but I feel for her because I think she must feel so trapped in her body and mind, and I cannot even imagine how scary it must have been for her when she was first having the stroke and could not talk at all. I get frustrated with the hospital personnel caring for her, because while I don't know what their procedures are, or why they do/do not do certain things, and while I am not nearly as educated as the nurses, etc., are with patient care, etc., I know enough to want them to be doing a LOT more for her. I guess I worry about the fact that she is still dehydrated, etc., and I wish that she got more aggressive, yet compassionate, care. Don't get me wrong, the nurses are really wonderful! It is just that nothing is EVER good enough for someone I care about, unless it is obvious that they are getting EXCELLENT care. I just wonder if she'd survive being in the hospital if she didn't have family to watch out and keep and eye on her care--because lets face it, with all the staff shortages at the hospitals, they just cannot keep an eye on her, make sure she's eating or drinking, etc.

Hospitals are going out of business right and left, they are understaffed, and the patients suffer. It should NOT be that way. Of course, I don't have any brilliant suggestion for how to make that problem all better, but I think things could be better than they are.

Acceptance and Prioritizing

2007-08-29T20:29:00.000-07:00

Acceptance. Well, I guess reluctantly
I've started, rather, to prioritize,
and damn it, perhaps accept that this is
the hand I've been delt. It could be worse,
It could be a LOT worse. I have it better than SOOOO MANY,
but I have my days where I get frustrated because 'every' door is not open to me, anymore.

There's dreams I've always had, but now may never do. Notice I said "may." Maybe someday there will be a back surgery that can fix my disks and irritated nerves, and stabilize everything. Then I could go backpacking. That has always been my dream, to go on backpacking trips. Right now, the weight of even a light pack would make my legs go numb, and make my muscles dysfunction, making each step like trying to walk in one of those nightmares where your legs feel like lead or you are walking as if in fast moving water, that is moving against you.

So I guess you could say I've developed Hope.
Acceptance is knowing that I'm probably never going to do some of the things I wanted to, like working just one more year of EMS, which would have allowed me to have been involved for 8 years, my original goal. Hope is realizing that my brain is getting better, my emotions are less tumultous. Hope is hoping that there will be something to cure the remaining health problems I have so that my back will be strong again, I won't have to worry about losing a leg or two if injured because my arteries will be ok, hope is hoping for life without medications, and dreaming of a day when it will be completely possible. Hope is realizing that I am getting better, and plan to continue doing so. Hope is realizing that whatever may happen, I'll be ok. Hope is hoping I never have something called "late onset brain trauma" aain.

Acceptance is saying that I cannot do the backpacking trips that I've dreamed of, and realizing that any traveling I may do, and adventures I may have, must all be carefully planned, including plenty of medications, plus backup medications, plus a safety supply in case anything gets lost or stolen....And I have to plan for climatic dangers as well--I have to be kept cool in the heat, and toasty warm in the winter. I have to be careful about falling, about getting dehydrated (easy to do), about injuring one of my legs, or even getting cut or scratched as it may not heal without aggressive care and antibiotics. I have to worry about being unable to get help if I am disoriented in a strange place, or if I fall ill and am not clear in my ability to speak and advocate for myself.

The parameters for adventure have become narrowed. There is a certain freedom, usually an inherent gift to the young, which I am unable to enjoy. This is the freedom to go anywhere, do anything, stay up late, and take a few even seemingly minor risks, and have adventures, whether it is traveling, staying someplace new, etc.

There are financial restrictions, too. The cost of living, nay, the cost of staying alive and functional and reasonably healthy, is daunting. But I have hope that I'll be able to get well enough that I can 'get on my feet,' and support all my financial needs, for myself, in due time.

Hope is the dream of finding someone that loves me as I am. It is also the hope that I exell at being who I am now, and doing what I need to do in this life. Hope is the leap of faith I take by consciously saying, I am NOT going back to EMS again. The Hope in that statement is, I hope if I say this enough, I will be ok with it, even though, right now, the dream is fading, but not completely gone.

Hope is the longing that I'll never need to abandon any dream, as long as I hold onto it long enough.

For All they can Do, they Do so Little

2007-07-14T09:05:00.000-07:00

Technology
Has not yet caught up to me.
The Human Spirit
Cannot be undone or overcome.
Some days the warrior is aided by a pill
Other days, the Spirit
supercedes the ills.

But when the Spirit can only do so much,
And medicine can not do much more,
Frustration sets in,
Anger makes thin
The patience with modern life
That leads one to water
But cannot make one drink
Or fix a body at some point.

I tell the man in the white coat, again,
My BRAIN is recovering, now
about the rest of me--how
Come you cannot fix my spine
I am sooner regaining my mind
Only to see that my ability is limited
By a complex interplay
of small insults
That work together and form significant faults
Which limit walking and moving and sleep and such
And exhaust resources
Far too much.

But,
The man says,
Technology has not
Caught up with me
To make a long story short.
One poignant problem can sucessfully be repaired,
But several things playing ping-pong with neurons
Is quite another thing to be fared--

So until the day that
The technology supercedes
Me,
I will still need
Technology
to nearly free me,
Technology to try to suceed in life
Technology just to be, me.

Lady A.'s Wisdom

2007-02-22T12:02:00.000-08:00

I can tell that
She used to walk.
Perhaps it was an accident,
Or perhaps like many with Spina Bifida,
She walked with braces as a youth,
But as time when on it became
Too painful.
I know this because her legs
Give it away--
Too long to have spent life in a wheelchair,
Yet too short to indicate
That she walked until recently.

As I assist her
She looks me in the eyes and says,

"You are so blest,
To be able to experience life both walking and in a wheelchair...to do both."

I reply, "Thank you, and I try to count my blessings...I look at what you and Lady B. have to face, and I don't know how you do it. Though sometimes it gets hard to keep perspective, dealing with people's confusion at what I can or cannot do."

She said more, though, in fewer words,
And I, unable to answer her wisdom
forged through a challenging life
Faced with humor and strength
Feel fortunate
To be a mudskipper,
And to have a confusing future
Not knowing myself
What I can and cannot do,
But I feel more fotunate still
to have had the chance
To hear her wisdom

and to Let it
warm my heart.

I quietly thank the powers above
For the experiences I used to despise
And that I can expereince life,
As she put it,
From both sides.

I have been giving a blessing,
And a gift which I must
Humbly use
To teach me not to condescend others
To teach me that the human spirit
Is stronger than physical weakness
To help me to make the world
A bit better for all I meet.

I walk, I wheel, I am blessed.
Thank you,
Lady A.

Mudskipper

2007-02-15T10:42:00.000-08:00

Sometimes swimming,
Sometimes jumping
Out of the water to look around
A part of both worlds,
And yet apart from both worlds,
Quietly lonely
Yet laughing at the paradoxes of each…
Knowing that neither existence is better or worse than the other…
Both world are the same.

Some days wheeling
Some days walking
Standing or sitting, trying
To take it all in…
A part of two cultures
Yet apart from both cultures
Blessed and relieved and lucky
Yet confused and cursed and lonely…
Trying to comprehend the complexities
Of the interplay
Of two very different worlds.

I am a mudskipper.

Photo Source: http://www.freundfactory.com/1007566.jpg

Numb, Yet Never Serene.

2007-02-08T12:41:00.000-08:00

It seems like it has
Been so long since I have had
A phrase to write
Or one to think
or Share.

Perhaps the worst part is realizing
Only now,
That I don't care.

I detest yet adore
My silken flowers
Which mirror my life--
Beautiful, shallow, never changing
Collecting dust
Seldom brushed
away.

My flowers are the only place
Where I still can show artistry.

The pills that make college easier
Have otherwise cancelled me
Out and away...
Dream another day...
Creativty hidden
Spiritually dead
But if it can keep me
Awake and out of my bed
For long enough to complete my degree
Then perhaps it is worth
The lack of true serenity...

Silent hands and silent face
Certainly portray
The silence now inside my heart
That will not move away...

How long has it been since I've been happy?
Or sad, or anything?

There is just this screaming in the back of my mind...
IS NUMBNESS BETTER?
The numbness is unkind...

Friend says,
You have not been happy, nor sad, either
Since this Summer...

It is only now I see
That I have merely grown
Colder,
Number....

My life has lacked the ups and downs
That add to it's odd charm...
This ease of walking and doing work
Is a drug
And it does cause harm.

I started the pills to escape
The racing, horrifying thoughts and scenes...
I do not want them back
But this calm before the storm
Is frightfully
Serene....
Hinting at the turmoil burried--
Whose slow-burning fire
Can seldom be hurried
Into fading away.

After years of the pills
I started to 'feel' again,
Something other than the Abyss and Pain
so characteristic of head trauma and PTSD
I felt ALIVE again....

But here I am now, back to where I began
Minus the racing thoughts--
And save for the muted pain--
This is not the first time
I've been unable to feel
to feel alive.

I had hoped it would not
Happen again.

5 Years Later and None too Bad

2006-10-06T07:21:00.000-07:00

Five years later
And I'm finally feeling
Like today is just a normal day
Which it is...

I woke up and the thought on my mind was simply
I am a better person
For all of this...

I'm glad I'm not Married
I am THRILLED I'm in school,

Yes I still have some problems
But they get smaller every day...

After five years I'm realizing
things will really be OK.

Stardust

2006-07-27T19:46:00.000-07:00

I never thought I’d desire this...
Medicated, dreamless bliss...
Emptiness where fear once held fast
(At least for as long as the pill lasts...)

Already my eyes are getting heavy
And I know dreams shall be in scarce supply
Those vivid visions at dawn don’t scare me
Its just amusement for my mind’s eye
Which has, undoubtedly grown restless.

The soothing embrace of nothingness
The waves that rock one’s body to sleep
A lullaby like a nap in a rowboat adrift
on an endless lake.

The anxiety which threatens to overtake my senses
Is dulled into submission
And the dread I felt would conquer me
Is for the moment, hidden.

I know this is no way to live,
It is constantly cowering in the dark...
But if the monster still looms large above,
I think I shall stay here, and hide a while
Until perhaps I have better weapons
Or at least a little rest...

A bottle of poison for Alice
to change her perspective on the world...
She is not bigger
the problems appear smaller
but then the fact
those things look smaller becomes
a problem in and of itself...
how does one walk out the door
when it seems impossibly impassable,
a pointless, futile endeavor?

Even love is lost at this point
replaced with a blissful feeling of
well-being,
or complacency...

But
when the monster is looming outside the cave
And the rock will protect you, though blocking the sun
For just a little longer
Rolling the stone across the door
to emotion
Is not nearly so scary
As it would at first seem...

But it is far from
a surrendered
serene...

2006-06-28T18:50:00.000-07:00

Keep on going
Long after I cannot...

Continuing to defy
the odds and limitations
Each day I get a little better
from sleeping all day and being
scared and confused and sometimes
scary
to back to school full time....
To being “normal....”

but those glitches that
set me back just a little some days
are the scariest....
I don’t ever want
to sink into the abyss
again.

6/28/06

Post-Traumatic

2006-06-04T22:20:00.000-07:00

Sleep
is to be avoided
or hastened somehow
when memories run rampant in the dark
making the weary want to cry out...

When in the drear nightmares set the tone
The night is a leaden blanket
in which one waits, alone...
For dawn to come and only then to rest
perhaps
the burning sun
will chase away the memories
Which one would rather forget
that cause the dreamer to toss and turn
Sheets drenched in clammy sweat...

So long it has been since those faces have paraded
Across my eyelids
Closed so tight...
The harder I bid them,
GO AWAY,
the closer they come each night...

tubes and drains and broken bodies
the blood was the least horror
the worst was what doctors did in the name of heroics
when they truly could do no more...
all those patients
subjected to the cruelty
in an effort to regain a semblance of life...
souls withdrawning to protect the mind
from the tortorous endless strife...
Presented to these victims
In the form of a sin--
The austere lack of compassion
Of modern medicine...
Wounds left open, "She'll die soon, anway...why close it when it won't heal?" BUT SHE is STILL ALERT! I always wanted to say...
As the patients, women, all, told their stories time and time again...sharing with me the horror
At the wounds from outside to deep within
Where surgeons did not think it worth the while
To give the patient peace of mind...
a bandage where stiches should have been
THey never closed the wound!
The patients were alert and talking,
And ALL of them KNEW!

And I saw this only
On women, I reiterate, too...

The horrors imposed by medical men
When they don't know what to do
But have lost any semlence of compassion...
And comprehension of another's view...

I listened empathetically
I've held hands with folks as they have said,
"This is the last trip for me..."

There is no way to comfort the dying other than just holding a hand
Words are meaningless
Because there is no way one can pretend they understand...
The fear, the pain, the utter disdain for the monster the doctors made them become...
why does the heart keep on beating after the mind is already gone?

There is both beauty and cruelty in death
And each person has a story they want to have told...
A confessor, I sit close and listen
So that a life won't be seemingly forgotten...
At the end of a life
There is something like birth
Where everyone looks the same...in hospital gowns
With pain-induced frowns... but what makes the situation worse...
Is that when you are born
The story is just beginning
The book is all blank pages...
But at the end of the life
The book is full
With the wisdom of the sages
Who live amongst us for years...

These sages, both young and old
Are the skeletons
I cherish yet fear...
Teachers and ghouls
Though never by choice...
Angels and demons at the same time drawing near...
Each one a lesson,
A life learned, lost or sustained...
The dread inside my heart endures...

The dread too monstrous for me to feel
Conscious and awake...
Consumes my dreams where emotions rule
And in fear I shake...

There is no way to placate the faces
Sometimes I try to make them smile
And envision wings about their heads
And envision them being safe in heaven
But the effect is fleeting, only lasting such
A short while...

Then the drear returns and I find
That while a soul is in heaven
It's left a print on my mind
And that it is both a blessing and curse
To be one of the last strangers
One has seen on this earth...
And to try to comfort the dying
One has never met before
And though it seldom works, to keep trying...
As they stand near heaven's door...

The worst was the quite prayers
Frantically uttered admist administering pf skills...
Please, sir, STAY ALIVE!
Your family wants to say goodbye, still!

The good ones that were sad yet beautiful
Were those where someone was helped
An old man got one last walk through his house
As my partner and I helped...
Wheeling him on the stretcher
Helping to raise his head...
So he could see his house rebuilt after a fire
his children gathered around his dying bed...
Those are the beautiful, proper ones...

The worst, though, is the lonely ones...
Children living
But barely kept alive
By some odd force managing to survive..
One never expects to see a mother holding her infant
Explaining how it has
"Failure to Thrive..."

The child left in a bed in a diaper
Staring at the wall

The patients no matter how careful we were
They had such great pain
The slightest motion hurt them all...

The older ones, the forgotten ones.
Who barely know their names...
screamed at by weary aides with bitterness...
brought to tears and shame
For no crime at all...

but then there were those moments
that were beautiful though sad
the man tending to his comatose wife
with such love
She was all he truly had...
In the Projects late at night
The husband trying to do everything right...
She never responded to the kiss of his lips
her eyes gazed forward
he must have missed
His wife, his lover, his best friend
But to her body
He did tend...
And his old tough hands showed such gentle care
As he helped lift her to her bed and tuck her in
As we were standing there...

Ah those dark nights,
Just like this one,
It seems if I let my mind run...
I feel still the edgy, guarded fear
Hidden beneath a calm veneer
Feel my muscles tensing
Against some unseen threat...

The faces rule the night...
And try as I might...
I am not allowed, it seems,
To forget.
posted by Reenie at 6/05/2006 12:50:00 AM 0 comments

Different Girl

2006-06-03T21:18:00.000-07:00

Window pane I am seeing her through
is cloudy

View obscured by
dust
fatigue
the pane
sighs

Different girl...
I tell the stories
of someone whom I must have known well
and
somehow it seems like
as
I tell those stories
She is both very near
yet
Very, very far away.

West wind blows
Away, away some of the
dust from the pane
and I can see her
dressed up for a party,
of the more refined type...
Hair done up, not a one out of place...
dress chosen with care
and jacket shoes, necklace earings
Finery for an enchanted night...
The magic of a dimly lit
Semiformal gathering, as coats are left hanging in the coat check
And women and men leave the exhilerating cold
at the door
to enter a night
of small talk and dancing and drinks and awards and well wishes...

Uniform, pressed...shoes, meticulous..., self....meaningless, perhaps too willing to answer to the beck and call...
Self is always meaningless
Until it is changing
and then
meaningful at last
in the shattering of
the looking-glass...

broken glass upon the floor
obscures the face
of the lover, the angel, the worker the friend
the daughter the sister the brother the man
the woman the family the child the elder the younger
shattered...

wrinkles are like
cracks in a vase, now...
on the face of a different girl...

like looking in a shattered mirror
someone else
distorted (?)
looks back...
but if there were not still some remnant
of the other girl
there would be no image left at all...
for who would be looking into the mirror
or out of those eyes?

The broken glass always tells
a story
many lips moving
in chaotic splendour
broken glass speaks
in a breaking voice
the same story
again
and again...
the stories of another girl...
an eye in a shard here, a cheek visiable there...reflections
of your memories
as you seek familiarity
amongst the broken mirror
and fail to see the totality
gained by gazing into a single shard
a single facet
and by looking carefully,
start to see
the face looking back is one laden
with familiarity...

each shard shows a different view
of the same girl...
it is all a matter of looking
and getting the angle right, again...

perhaps the girl has not changed a bit
only others perspectives of her?
Or, if everyone could shift their gaze just a little bit
would they comprehend more
of her, and thus have grown and changed themselves
to meet her half-way?

I tell this different girl's stories...they are not quite mine, but they are the same...

Defiant

2006-05-24T20:57:00.000-07:00

Walk, walk away
The weakness
Walk until the body
either Heals or Surrenders.

One foot, than the other, walk, walk away.

Defiance, walking.

This morning a walker
my muscles are so stiff
early in the day
and so shaky
until I am
moving...

how
embarrassing...

Tonight
I decided
there was nothing wrong with me...
I'd walk
walk until I was healed or
my body surrendered...

defiant.

I made it
all the way to class and back
And I
took the long way!
Almost fell
a few times
But
I did not.

I told my shrink today
That I've lied to him for
five years...
I was never in an accident
All my medical problems are
psychosomatic.

I don't need doctors
and
if I talk to him long enough
This will
ALL
go away.

He told me
to keep my doctors appointments.

Aparently
I made a good arguement for conversion disorder
but
He thinks I am wrong.

So I'll keep going to my doctors
Until I
prove my shrink wrong
and prove I am crazy
and that
I am the epitome of slothe
no offense to the good animal...

If I am crazy
it means that save for my mind
my body is well
and
I have nothing
nothing
to fear.

It
sounds nice...

but for now
I keep walking
defiantly.

Maybe this fall as the weather cools
I will NOT get worse again!
Maybe I won't be so achy and ill!
Maybe the summer will last forever
these
warm balmy days
that soothe my mind and body...

I love winter
but my body aches for warmth theses days...

Maybe summer will never end
Maybe this is all in my head
Maybe I am just crazy...

I think about it
as I walk
and walk
until
I am healed
or
my body surrenders.

Drifting

2006-05-22T19:51:00.000-07:00

reality is a balloon
i clutch the pink ribbon in my fist
and dare myself
not to let it
float
away...
i let the ribbon go
just a little
then grasp my fist
around it’s sharp edges
halting its
flight...
for now...
where is the end of the ribbon?
how long can I
keep my fist open
before
it is too late?

5/22/06

Common

2006-05-22T14:01:00.000-07:00

He says
it is common
for retired first responders
and those who were injured
to do what I did
to
stop and help someone
despite the supposed limitations...

he says this is common
for us
to stop and help the injured
I guess then we go back to our
own damaged lives.

he'd know he's been seeing
more causualties of 'heroism'
for years, now...

its nice to know
that i am still
'common...'
I Just wish
I knew more people
like
me...

because then they would know
and understand
what he can only imagine...

the confusion of
jumping back into
one's old role
with ease and
expertise

followed by the
inevitable re-entry burns
of hoping back
into the mortifying role
of a 'handicapped person...'

no one knows who
you were
or are

even worse
you yourself
do not know.

paradoxical

2006-05-19T19:32:00.000-07:00

trying to justify a very odd day.
An hour of physical therapy, went good, felt tired but elated afterwards because it will help me get strong again.

thought as I grabbed my coffee I'd stop by to see my EMS buddies....but they were all out on a run...and I was left looking at a locked door as my heart sunk. So I went shopping with my friend and roomie, and on the way home from shopping, a guy got in an accident, and was lying bleeding on the side of the road...long story short, I helped treat. I jogged the distance from the my car to the scene, a few hundred feet, and helped care for him, just like old times, except I couldn't help lift him, my leg was still weak and shaky and I hid it but I could feel it.

Then I came home, changed my clothes, washed up, and needed some more stress relief, so I went to the mall....and because the pain and fatigue for the evening had set in, sat back down in my wheelchair...

and spent the evening trying not to cry.

I cannot justify this paradox. I think to myself, maybe if I just worked harder !!??!! Maybe I'd be ME again, maybe I'd be all right, maybe I can work and wish this all away.

I'm almost done with college, a major victory is in sight, but as my friend pointed out, it is those small triumphs....like being in EMS again....that some days seem more enticing, more tangible, if truly unrealistic/too high risk...too quixotic, perhaps?

This morning, after meeting a locked door, I thought I should just give up on EMS, then this situation occurs in front of me, and I jump back right into my old role, not feeling the muscle stiffness, not feeling the pain...again...for a little while, focused entirely on someone else, and save for the tremor in my one leg, doing ok.

but then I remember the pain of the overworking of my body. I know now that the vascular pain in my legs would not allow me to work those hours. In the evenings, after I've been moving around all day, it becomes an unrelenting ache, and nothing makes it go away, but rest and my wheelchair help...

I almost cried in the mall tonight as I said to Chris,
I cannot
cannot justify
hopping out to treat a stranger in need,
walking back to my car
and back into my wheelchair
and this life
which EMS gave me and took away

maybe,
i thought to myself
maybe I am lazy.
Maybe I can will away
the weakness on one side of my body
the blockage in my arteries that they still do not know what is causing it
maybe I could just always bite back the pain
maybe I have gotten soft...

but no,
the unrelenting pain
the swelling in my legs
remind me that this is real
and I cannot just try to pick up with my life as I'd like to
for some very solid reasons......

no pun intended.
(SORT OF!)

I am doing so much better. I am almost done wiht school. That alone is a miracle. And there is always time for more miracles. I need to focus on that giant triumph within my grasp.

But this feeling of unreality, that maybe I am just being lazy, is equally real and painful. My doctors must be wrong! I must be wrong! More and more I believe this, despite the x-rays and mri's they show me, despite the pills they sustain me with. THEY MUST BE WRONG! NONE OF THIS CAN BE REAL.

I don't believe it is anymore. I go through the motions because my legs hurt, my back hurts, and I can still logically convince myself that it may help, the blockage is there, maybe they can make my life a bit better. But I don't know if there is even anything wrong with my arteries. They want to do more tests to see what is wrong with them. But I don't think there is anything wrong, anymore. Maybe if I meditate this will go away. Maybe if I just bite back the tears more I will be fine.
Maybe if I keep pushing through the pain I'll come out fine on the other side.

I must just be lazy, that's all. I was never in an accident, and it hasn't been five years. It's all been a bad dream....well, that is what it feels like. It cannot be real. I don't want it to be real. I'm just using a wheelchair and going to doctors for attention. That must be it. The MRI's aren't mine. I've been thinking that lately, too. Maybe they mixed mine up with someone else's. Mistakes happen, right?

I cannot justify this....

What one does not know...

2006-03-27T09:18:00.000-08:00

Eyes turn to glass
At the end of the day
At the end of a life
Taken away...

Have they all been assuming
It was best to keep me here
In the dark?
Wait for the memories to return on their own...?

I ask of the child...
"He's fine..."
But I know you are wrong...
I watched his soft eyes
turn to hard glass...

Perhaps you feel
It is better I do not know...
Perhaps this is why you tell me
the child was fine
whenever I ask
"But what of him?"

You're probably amazed
I cannot recall
The details that horrrify
you to imagine...

I thought I remembered it all
But now I know
I did not
and do not...

they took the oxygen away
and i know that he was not ok
removed the mask from his face
i don't understand
but i think i am finally recalling
what i did not want to fathom
and worst of all
i
am stuck now watching memories unfold
and craving to recall a past i dread
just to know what happened that day
to have it out of my head!

no one tells me of the little boy...
only the little girl...
and silence speaks volumes--SCREAMS
Please, STOP THE PAIN!
as the little girl begged me...desperately
and there was nothing I could do.

My blissful numbness is being shattered
As I once more awaken.
Another step closer to healing
A dangerous step taken.

I've realized I no longer want
To fight the monsters--
Instead, I'd rather know what they are hiding
in this battle in my head...

I watched a child's eyes turn to glass
there was nothing I could do?
Regret overwhelms me at last
and alone I cry as the sun has set
and no one can see my face
contorted in memories painful
I know that I was damaged, too
But I should have been more ABLE
to play God and save a life destroyed,
heal a body maimed with a miracle
but instead I saw his eyes turn to glass
despite doing everything I could
everything will never be enough

why did I survive?
I wonder....
They call it survivor's guilt...
I thought I was already past it,
apparently not...

Is my life worth so much more than that of a child who
lay dying?
I don't believe so, all lives are equal!
And I am left crying
Though not as hard as the family and friends
Who knew him longer than I
fifteen minutes
my life changed
as the glass
moved into his eyes.

Hello....

2006-03-23T17:32:00.000-08:00

"Hello, Ca......"
Voice trails off
A momentary pause
Eyes travel from the
hunched shoulders
to the wheels
carrying the patient...

appology stated for the loss of composure...
"I didn't expect to see...What happened?"

time to
explain
to this young
honest doctor who
actually cares..
making him
one of the rare ones...

the drugs
made my muscles
rigid
as the other doctor
accidentally
overdosed me...i guess...
they gave me too much
uppers...to keep a weary body awake
and make my muscles strong, again...
muscles weak, now,
the rigidity is fading
but
not gone
wooden muscles
(like that nightmare of the little boy's
legs
part wood
part flesh
i hate dreams like that...)

tell him how
my immunity seems to be down again
i know the symptoms well
the drugs that keep me awake
keep my body
from healing itself
infections
open wounds that won't heal
try not to fall
try not to get cut
or it will be bad...

he's smart
"why make another wound...come back if
more sutures are showing..."
old stiches
supposed to be internal
working their way from the inside
out
on what once was my
pristine
abdomen...

he cannot fix
the wounds on
my arm
too risky...why create
another wound...he's right, I know
i just have to accept
the cosmetic affect
of open sores
i guess....

my legs require
another doctor
a vascular doctor or something like
that
to maybe
try to make me
beautiful again
or at least
heal the
small ulcers that crater my
legs...

i am strong
inside
and will be again
outwardly...
the nurse
says
i am like the
energizer bunny
she did not flinch or show any suprise about the
wheelchair
just said she was sorry to see me
in it
doctor however
couldn't finish
saying my name
took a moment
to collect
his composure

asks if it is ok
to pull
the thread
out of the wound
i am all to happy to let him
it will hurt less later
and his skill
shows
comfort in
action
his skill at least
gives me hope
of this
healing...

but the wounds on my soul
and in my mind
will have
to wait.

A Girl amidst her Flowers

2006-03-21T17:40:00.000-08:00

Let me not lead you
To believe that I view
My life as all in vain...
This page is but
My humble writings
Where I can unleash the pain...
Hide my monsters in cyberspace
So they do not truly exist
At least until the end of the day
When I can go on line and list
The battles won and lost or fought
If only inside my mind...

A girl amidst her flowers smiles
Happiness is never far behind.

You see, life is never all joy or all hurt
Or we'd be one dimensional, boring, with no true worth.
It is in traveling the changing road
That dimensions are drawn...
If life were all happiness, what need would there be to move along?

In times of need such treasures emerge
In those who enter ones life to stay, or sometimes for only a few minutes out of a day...
The good and the bad shall one day make sense
In people and in all events...

When blessings and pain are put on the scales
And judgement is weighed...
One tends to realize the goodness uncovered
Is worth far more than the sum of the pain...
It is easy to look back on the past and know-

I'd live it all, again.

Thank you to Heather M., for the photo, and the inspiration, too!

At the End of the Day

2006-03-19T16:11:00.000-08:00

At the end of the day
The scars start to show

The fatigue re-emerges
Personality
goes

Body aches for sleep
As chemicals break down

Eyes stare blankly forward
not caring who is around...

Words that may be
wrong
are harder to control...

silence becomes golden...

and away I'm pulled
into that blissful numbness where
Nothing matters at all...

the fear subsides for a little while...
and I can forget
this is not what I wanted
at all.

Fragmented Dawn

2006-03-15T18:45:00.000-08:00

Fragments fall
like the fiberglass working its way
slowly from my arm...
shrapnel from a secret war.

embedded truths
Of a reality almost forgotten
in the unreal haze surrounding it.

it seems like
none of this is real
none of it ever happened...
And I find this unreal sensation
Of walking in a dream
to be a blissful
Reprieve, in essence...
Lucid dreaming where
I have some control over the nightmare
And can guide a hazy figure
That is a symbol of myself
albiet haphazardly at times...

Perhaps this detachment,
This back-seat driving, if you will....
Is a wonderful survival mechanism...
It allows a body to muddle through
And in time,
perhaps awaken
to the fragmented dawn.

cm 3/15/06

Broken October

2006-03-09T18:13:00.000-08:00

Broken october
2001
dear god if you exist
what have we done?

why does this child cling to me now?
her brother is worse, anyhow...fling her grasping hands
away...
to check the silent one...

broken dreams wrapped in wreckage

a broken mind hidden behind sharp bone
a story dies
another changes
one has yet to live
the ending, though, remains the same...

six, no, seven...

time is changing me...

memories come back
realizations come back
recollecting
once more seeing others views
painfully...

five years of heartache
i at once am recalling
the curse of forgetting
is one day remembering
or realizing the aches
in other's hearts
and in your own...
and in your own
all these hurts now reside...

broken october
broken lives
no one ever is the same
but the end remains the same
but the end
remains
the same.

The Debate Continues

2006-03-09T16:25:00.000-08:00

Trying to separate myself
From a life I once lived...
I miss the glamour
The 'glory' if you will...

I miss the feeling of being ALIVE
the Vibrant People
who shine too bright and burn up so quickly...
eyes bright
in a setting sun...

I miss the standards of a so-called honour...
Loyalty that includes
If a partner is shot
Leave him where he lies
And get to someplace safe to get help
lest you both die...
This paradoxical loyality
Which somehow works...
Preserve the self
First...

Up is down and right has left
Surrounded by people and emptiness
Alone in crowds and in one's head a thundering race
Of another crowd, at a frantic pace...

I miss using skills to comfort
To stablize
though sadly some days, prolong the
inevitable
But yet a certain satisfaction comes
with doing even that which does not match
one's soul's ponderings at all
Provided it is done well
And death is prolonged...
For at least
a little while.

Ah, I miss the paradox without which life is
so black and white
as it was then
but no longer am I
The point about which
decisions must occur...

The life which was death
And the dead tending to the wounds of the dying...
The mad attending to the mentally ill...
All these somehow
I miss
But perhaps
I disdain them all
equally...

The Pills don't work no More

2006-02-28T20:42:00.000-08:00

The pills don't work no more, Mama...
Is there nothing anyone can do?
I get tired of this burden, Mama
And the pills don't work anymore...

***
I'm given a capsule of hope, Mama...
Here's a new drug to try...
Maybe this one will work
And let me live a better life...

I feel like a kid on Christmas, Mama...
Waiting for the dawn
To try this new magic capsule, Mama...
Will it make me strong?

The days I feel good I always overdo it, Mama...
Because those days are few and far between...
I just want to graduate and make you proud...
But I've been struggling...
Because the pills don't work no more, Mama...

And these new ones won't work long, too...
They'll up the dosage till I'm sick Mama...
Then take me off it
And start again
That is all that they can do...

I like me as I am, Mama
But I want my old body back...
And my ability to remember and think
At least I think I do, Mama...

So Mama, I am going to sleep now,
And I am excited and scared...
New pills promise hope, Mama...
But my doctors some days don't seem to care...
How scary it is, Mama....
When my heart isn't beating right....
When my body won't heal
And things seem to be shutting down
And there is no hope in sight...

Hope comes and goes like waves
On the beach we used to run on...
My God has it been that long?
Some how I manage to go on...

But these pills, Mama.
These pills are my making and my destruction...
I need them to live
And make a life
But when they make me sick and cause such strife
It seems all for naught and I
Laugh at the irony!

I take these pills to live
Yet they are slowly killing me...

2006-02-25T08:53:00.000-08:00

Sirens scream for Silence
From their Rocky Shores

When silence is all the mind cries out for
And begging the images take their leave
Becomes but the only thoughts in one’s head
There is no time to grieve.

The rocky shores the siren’s cry from
A haunting, foreboding song
The beauty of the change beckons
The weary worker on...

To skirt the shores a thousand times
Perhaps we all shall do...
But some remove the plugs from their ears...
And harkened by the tune
Of promise and release from all
The grimy, dirty, pain...
Head towards the rocks
Knowing full well
What it is they hope to gain...

Silence.

The irony...
To follow the siren’s callings
Their lilting, taunting voices
In hopes of finding
That blissful nothingness
One craves more than life.

One rock is the time cards
The hero punched for years
One is a picture of a little boy
One is unshed tears.

One rock stands for lost time with people
Whom it is realized too late
Never would have wanted our hero
To steer the ship towards this fate...

The rocks of long hours, painful images and stress
Build and loom and tower and cower beneath the waves
Begging emptiness
To enter in and shatter these stones
That though, beneath the sea
Are an ever present burden to those
upon this odyssey...

***

And thus I read the paper
And a million thoughts entered my mind...

How tragic a loss
Of a beautiful voyager

Who had once helped me...
Whose face I scarcely remember
And whose cause of death is not entered
But the lack of mention bids the reader

To realize what transpired...
Who shall save each hero when
The story which has tired

Their soul to the point of wanting for naught but to follow
Thantos’ call...?

Where is the crew of rowers dutifully moving Odysseus from the rocks
Despite their own longings to hear
The beautiful voices free them...

While I for one
Am all for choice
There comes a sobering time
Where I wonder what would be if someone
Had entered the story line...

And reminded her how worthy and beautiful she was
And held her near then helped her escape those rocky shores
Rowing her far from there...
To get the help that now exists
So that she could find
There can still be quality of life...
And joy
yet to find...

But I do not know her whole story
There is always more...
A past of pain, few things to gain
that daily greets her at the door...

I wonder had I
Written to thank her if it would have changed a thing?
Or just added to her memories
And her suffering?

But I know that each encounter is merely another brick in the wall...
And praises may be what finally make
An imposing tower, fall.
(if administered when our hero feels they’ve done nothing, at all.)

To those who’ve followed the sirens
And skirted those rocky shores
One knows the words and praises needed
Come at the wrong times or never at all...
And those words never heal the isolation
At the end of the day
When images and nightmares
Of the journey won’t fade away.

And so, to this Journeyers
I will say though I scarcely knew you
And the papers will not specify your death
the lack of words screams
“Emptiness!”
I want you to know your life touched mine
And many, many others, too...
You could have perhaps, done so much more,
But perhaps you’ve done all you needed to...
And hence the tragedy of why
There was no angel standing by
To remove a weapon or pills from your hand
But while there was no angel bidding you stay here
Perhaps there was one in the Promised Land
Who said,
“My child, you’ve done your time...Come, now, leave this all
Behind...”

I feel there is much about death
We do not know
But there is one thing I think I do
None of us go before our time
Whether society views the cause as a crime...
Or as selfish...
One could say death always is!

And I comfort myself
When I read of the others
On their odyssey
Whose life was seemingly cut short-
I think
Perhaps
it was meant to be...
Perhaps they’d done all they needed to-
Which is why
We could not be
Or never saw an angel at her side...

But it is too easy to forget that angels
Inherit not just this realm...
Perhaps one said
It’s time to come home
Though I pity the brief rough journey across the rocks
It’s the straightest road I know....

An angel just beyond our horizon greeted her
On the other side...
And saying, I’m sorry that was the manner
In which you had to die...
But I was watching, waiting
For your eyes to close and then
I could embrace you
Hold you close
And welcome you home,
again.
***

And to this fallen hero
I bid you
Do not suffer from guilt
No one dies before their time
Though some days it is easy to think so
Because there are those who miss you, so,
As they can no longer see you
But hopefully they shall feel your touch
When their lives get to be too much
Hopefully your hand on their uniformed shoulder
Shall steady them and
Allow them to carry on....
Perhaps your body prevented you
From doing the fullest of what you can do...
A beautiful soul who now can fly
And stand ready at the side
Of another in their time of need
And let them know if the time is wrong
Or perhaps one day, should it be right
Be a gentle guiding light
To lovingly guide them home.

The world is a darker place
Without you visible in it
But perhaps brighter
With the good you can do...
But I bid you please get some loving rest
And heal from these earthly scars
And take your shining place amongst
The glistening, silver stars.
You’ve earned it.

Rest in peace, and God Bless,

February 2006.

The OTHER EMS prayer

2006-02-04T10:46:00.000-08:00

As I perform my duties, Lord
Whatever be the call
Please hide the burnout
And the tears
That are threatening to fall.

I still serve and do my best
On every, wearing scene
I know full well the look of death
As I go through the motions,
like a tireless machine.

This calling to give of myself
I no longer understand
My body aches as the tones sound out
But yet I help my fellow man...

To have the chance to help a child
Who, because of his injuries
Will always be rendered silent...
Too many of these I see.

The praise of men
I seldom hear
At any of the right times
But victims and their families hit you, hate you
As if helping were a crime.

I used to think that “giving back”
Was it’s own reward
Now I pray for strength to ignore the nightmares
And just get through
That’s all I’m asking, Lord.

--cm 2/4/06