paper church

My son who has autism...loves churches. I think that not a day goes by that he doesn't draw or create a church. He makes them out of paper and tape. I have seen them in the fireplace. I have seen them drawn and laid out upon my kitchen floor. He makes crosses out of legos and tapes them to the bathroom door. He lines up chairs for pews.

And before you say anything....no...we are not particularly religious...at all...here. This is just something my son does. He has been particularly fascinated by this theme for as long as I can remember.

So yeah...I think maybe it is time I listen more attentively to what my child is innately feeling.

I am excited about exploring the topic of spirituality. I have many posts to come.

prozac update...day four

Here we are at day four of taking prozac.

and...i feel normal. normal as in low energy and a tad irritable self. today it feels like i haven't taken anything. yesterday i could feel something happening with my mood but not today. i feel like cinderella...after midnight. back to this again.

it is so hard to figure this stuff out as i have my moods and cycles of moods and i also have the MS doing things...and then you add a medication. which is what? we don't know i guess until time has passed.

it is only day four..i know it sometimes takes weeks for any big changes to happen.

more than a few people have asked me why i am doing this finally. i am now 43 years old...i have lived with my depression all of these years without benefit of any meds. this was HUGE for me to finally do this.

part of my reason was the MS. i have read research which shows that prozac may help with multiple sclerosis in delaying having more lesions. i will find that research for another post. also i have read and my neurologist told me that it can help with the fatigue of MS. don't take what i say here though as cold hard facts...please always research for yourself and ask your doctor. i am just reporting what i have read and what my neurologist has told me.

the other reason for my wanting to take something was an increase in the fluctuations in my moods possibly caused by the MS. it seems to be causing me to have more moods if that is possible. my lows were coming faster and i was sinking more. i want to do better...feel better...and be there for my family. it is time to take more responsibility for my mental health.

And lastly...my youngest son who has autism is now taking Prozac. this too was a gut wrenching decision. he is nearing adolescence and his moods were becoming debilitating for him...horrible bouts of crying upon awakening for no apparent reason and phobias so strong that he didn't want to leave the house. saw a neurologist who recommended prozac and...by golly it works for him. does it make everything all better? hell no. there are still many challenges but at least he is not suffering as he did. seeing him go through this process...i wanted to go through it with him. my neurologist told me that if one person in the family does well with a medication such as prozac...there is a good chance that another family member will too. makes sense...as we share some of the same genes.

and it is just time. i wanted to at least try this option. it is no panacea...no cure...no miracle i am sure. just a tool to help me so i can function better. i hate pills. i really do. i am not one at all...by any stretch of the imagination...to jump at the chance to take a pill. more than anything i wish to be normal...feel normal...but i am the way i am.

such a stigma still about mental illness. and it makes me pissed off. clinical depression is a biological disease...just like diabetes...or any other chronic physical disease. having a mood disorder isn't a character flaw. it isn't something you just snap out of. i want to keep saying these things...to educate...to inform. someone you know may suffer from clinical depression. it may be you.

i will give you more updates as the days pass...

My younger self answers...

I am wanting to write about and discuss the topic of spirituality and I had posed the question earlier of why do you think we suffer. It seems I have been grappling with this question for some time now. I wrote to myself several years ago about this very topic...seemingly answering this question I pose today. Was I naive? Simplistic? Perhaps so but my feelings today are pretty much the same. I wrote this way before I ever knew I would be diagnosed with Multiple Sclerosis so...it is quite interesting to read now.

--------------------------------------------------------------------------

Things happen for a reason



Do you believe this to be true?

What is the alternative? To fear the world as some horribly destructive malevolent place?

Bad stuff happens everyday. Pain is the great equalizer. Everyone will experience pain in their lifetime. Good, worthy, and loveable people sometimes have more than their share of pain. Pain doesn't play favorites...it just is.

The meaning we place upon it is ours. Could the meaning we put upon our experiences be an illusion? Perhaps. But it is THE thing we do have in our arsenal that we CAN control.

Forgive me for sounding like some damn pop psychology book. I am only coming to these truths myself from experience...and I need to write them down.

Wouldn't it be better to see your experiences as having meaning than...to just dismiss it all as random happenstance? Because...whatever you believe will have a domino effect upon your thoughts...and then your actions...and ultimately on others...who will then have rapidly firing effects upon the rest of the world.

Sometimes we get wake up calls. Things happen which push us to the brink. Pain is usually that sort of wake up call. We are supposed to listen. But it is so hard because...duh...we are in so much pain. But beyond the pain are opportunities. And I hate to say this...but growth within the smallest parameters can produce ultimate possibilities.

I am speaking in vague generalities. Maybe soon I will talk in concrete terms. I just need to figure this all out.

It is as though there is no mistake. I have been told things all along...I have just been resistant. I need to change my perspective greatly. I need to change. I want to. If you do not make the choice to change on your own...life has a way of cornering you and forcing that change. Don’t wait for that...do it now.

Just thinking about water...it is a life force for us all. You go to the ocean and...you see it's beauty...it's magnificence...it's peacefulness. Yet it still has the raw power with which to kill a man. The same water can be life saving in the desert but can also be the thing which is used to take one's life...one can drown in a bathtub of water. There is a dichotomy to life and to us.

Shall we grow or drown?

I do believe it has to do with the reasons...the beliefs...the meaning we intentionally choose for our life.

Monday Night Stream

I feel the need to babble.

Rollercoaster...still present. LOL I am not that naive to think it won't go away. I have been this way for...ever. But I am feeling pretty good overall...so far...and this is good.

okay i am gonna get comfy and omit the capitals. this is like getting into my pajamas. there...that feels better.

i have been thinking that when you write...it seems to be a mirror for others. what will they find in the words? sometimes people find things that never existed...but perhaps what they think should be there? fascinating reflections. i always get a chuckle out of observations which hold no truth in accuracy....and you stand back and wonder...where did that come from?

i like people. i love to know what people think and feel. i love diversity of thought and opinion. i like the good stuff...substance. i admire people who say what they feel even if i don't agree with it. i enjoy the stimulation. i especially like it here in the blog world as i am an introvert. in the "real" world i am quite shy.

people...people who need people....are the luckiest people...in the world. lol

i need people. it gets lonely here in my head.

sharing thoughts, ideas, feelings, humor, joy, fears, dreams...is what it's all about.

so how was your day today? tell me all about it.

The Spiritual Question of Why?

There was an interview on NPR recently with Bart Ehrman who wrote a book entitled, "God's Problem." Ehrman, a former devout Christian speaks of his attempts to reconcile why there is so much suffering in the world if there indeed is a God. He cannot come up with any satisfactory answers and ultimately loses his faith entirely.

Here is the link to his interview and book.

It really got me to thinking of how you all might answer the question which Ehrman poses: "If there's an all-powerful and loving God, why do human beings suffer?"

I have my own biases, opinions, and answers to this question which I am still in the process of developing. But I was wondering how you all might answer this age old question.

When you are faced with crises and challenges which are difficult to understand such as the loss of a loved one, mental and physicial illness, and general suffering, the God question usually comes to the forefront. What do we believe and why?

So what are your thoughts...whether you believe in a God or not...why does suffering exist? Is there some greater purpose?

Prozac update...

This is the third day of taking Prozac and...I gotta tell you the truth...

I FEEL GREAT!

seriously.

I do have to be careful it doesn't throw me into mania here but I do feel great. I have never felt this way. It is like I woke up to the world. Colors seem brighter. I feel like I can literally see with more clarity. I feel like doing all the fun things I have never done before.

The first two days...the only things I felt were a sensation of dizziness when I would get up too quickly and...some definite lethargy. I felt very tired but that may just have been my MS. No stomach troubles. I am taking it with my breakfast. My libido...definitely still there...no problems yet.

I felt a little strange today...like being in a vacuum..a bit of nothingness and them whooosh....came some good feelings.

I like it! I really like it so far!

All these years not trying this...wow. So far so good...just gotta watch my manic side and...make sure I can feel all my feelings. This is a totally different experience than taking the SAM-e. With SAM-e I felt like doing things...had more energy...but the emotional component wasn't there so much. Prozac is making me feel good.

We shall see! Thumbs up so far me mateys!

Hypomanic on a Saturday Night

Hey there my special ones...don't say I never gave you anything.

Sometimes I get caught in a groove and don't want to get out cause I am having too much fun. Such was the case last night in my quest for more links. It is a big 'ol blog universe out there and many interesting and wonderful sights to see.

I have a NEW category of links...lol...Even More New Blogs....down there to your right. Keep scrolling...you will find it. These are folks who I visited their sites but didn't have time to comment yet. I really hit the bonanza last night with finding cool blogs to read. I feel fortunate. So anyways...give them a gander and see what they are all about.

Yep....I was feeling a little hypomanic (little mania) last night so spent time reading blogs instead of sleeping.

So there is my present to you this weekend. Enjoy!

Looking for meaning, looking for links

Been thinking about writing...specifically blogging. To tell you the truth...when you go out there and read a lot of blogs...there is so much crap. Granted...my blog can probably add to the steaming load. lol But I do try. I can't be all serious all of the time. Nor do I want to be. I do want to have fun, be lighthearted, share some much needed levity. The world does need some fluff.

I guess I am viewing the world of blog writing with jaded eyes. So much of it is a game...a ploy for attention or comments or...god knows what. And I raise my hand here. I am guilty as charged. I do enjoy validation. I do like it when my efforts are noticed. But it does have to mean something. And I honestly feel I have achieved that here. We are developing a great little community here of friendship and support. I want people to come here to my blog, not out of a sense of some sort of business deal of obligated comments...but because you genuinely enjoy reading me.

In my explorations lately...I have stumbled across blogs and sites which are supposed to be about self help and growth and then I find that they just want to sell something. Ewww. I feel like so much of the blog world is made up of entertainers or shmoozy salespeople.

As a writer...I don't want to become that. Part of writing seems to not only be the writing but the marketing of self. I just never want to lose my focus that...I am writing for me. And I also write in hopes that I can help someone else out there going through their difficult times.

So I am looking for new links...specifically:

1. Folks who are facing adversity. People who are dealing with challenges in their life (who isn't I guess). I find sustenance in knowing how others cope.

2. Spiritual inspiration: I am looking for a wide and diverse range of links from people who find hope in traditional religion as well as other philosophies and ideas.

3. People who want to change the world: Looking for sites and blogs of people wanting to make a difference. I am not even sure of what I mean yet but I will know when I see/find it.

I am looking for meaning, for inspiration, for something good.

Feed me.

PS I have found some great links already...I am excited!

Taking the Prozac Plunge

Well kids...it's that time in life to face the music. I have been battling my moods now for decades without the help of entering a pharmacy. But now...I have this Multiple Sclerosis gig going on and things are a little more "interesting." At a time when there seems to be this backlash against mood medications...I am finally ready to take the plunge. You know me...always late to the party.

I am not anti-meds. I was in the helping profession. I saw how very necessary they can be. I suppose I was just anti-meds for me. I couldn't imagine myself taking something which could potentially alter my brain functioning and mood. My brain is all I have you see...and I don't want to be messing with it.

Too...there is my childhood history of growing up with a mother who has schizophrenia...and seeing the multitudes of pills she had to take...each one extracting the life from my mother. She suffered from vision loss, tremors, confusion, and more from her daily pills. And they seldom helped. It seemed nobody cared about her...about us...except to give her more pills. I began to hate them as they were a poor substitute for real help.

So here I am years upon years later....staring at a pill on a paper plate. I ate my breakfast and sat and comtemplated this blue (generic form) entity before me. I sat there for about twenty minutes...carrying the pill to my mouth and then placing it back upon the plate.

It seems a defeat to me in some ways. And I know this is the wrong way to look at things...and realize I am only talking about me...and what this personally feels like for me...nobody else. I just...hate this. I hate needing help. But I will state here today that yes I do need help.

So I took the damn pill.

I wanted to tell you all so that I could report first hand...what this is like to a mood medication virgin. I will leave out no detail.

I will leave you now with the lyrics to the old rolling stone classic...Mother's Little Helper. Except...mine isn't yellow...it is blue. :>)

----------------------------------------------------------

What a drag it is getting old
"Kids are different today"
I hear ev'ry mother say
Mother needs something today to calm her down
And though she's not really ill
There's a little yellow pill
She goes running for the shelter of a mother's little helper
And it helps her on her way, gets her through her busy day

"Things are different today"
I hear ev'ry mother say
Cooking fresh food for a husband's just a drag
So she buys an instant cake and she burns her frozen steak
And goes running for the shelter of a mother's little helper
And two help her on her way, get her through her busy day

Doctor please, some more of these
Outside the door, she took four more
What a drag it is getting old

"Men just aren't the same today"
I hear ev'ry mother say
They just don't appreciate that you get tired
They're so hard to satisfy, You can tranquilize your mind
So go running for the shelter of a mother's little helper
And four help you through the night, help to minimize your plight

Doctor please, some more of these
Outside the door, she took four more
What a drag it is getting old

"Life's just much too hard today,"
I hear ev'ry mother say
The pursuit of happiness just seems a bore
And if you take more of those, you will get an overdose
No more running for the shelter of a mother's little helper
They just helped you on your way, through your busy dying day

writing for the future

I was reading how you can now create a post for the future so I want to try it. This could prove very useful when I am more energized and have lots to say but don't wish to put it all out there at once.

okay here goes...i will post this to arrive to you all...an hour from now. let's see if it works. it really is nearly 9 am now.

What do you believe?

I had begun with the topic of the human body but...I am thinking that I really need and want to talk about spirituality right now.

Let's start with beliefs...I am very curious.

What do you believe?

1. Do you believe there is a God?

2. Do you believe there is a heaven?

3. Do you believe there is a hell?

4. Do you meditate or pray?

5. What belief most sustains you...helps you through challenging times?

I am not a religious person myself...but I am spiritual. I am finding myself wanting to learn more about this side to me.

One of our many hamsters

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Just messing around...

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Just fooling around and discovered this site...they have some cool things...you can create magazine covers, they have free templates, and...you can also change your font.

What's it all about?

What's it all about...Merely Me?

Well I'm glad you asked. I will tell you what it's all about Charlie Brown.

*It's about friendship.

*It's about love.

*It's about giving with no expectations of getting anything in return.

*It's about finding that place in yourself which grants you joy.

*It's about putting blinders on to the extraneous, the erroneous, the stuff which does not matter.

*It is about forgetting oneself, losing one's ego, and flying free.

* It's about dumping complexity and the unnecessary.

* It is about being simple.

* It is about writing for yourself...not for any audience...not for gold stars, not for bacoodles of empty praises from strangers who don't know you.

* It is about community.

* It is about being genuine and congruent.

* It is about true caring...not the kind which can be condensed into a great sounding cliche.

* It is about doing because you want to, because you choose to, not out of obligation, fear, or ego.

* It's about healing from within.

* It's about standing up for what you believe in a crowd.

* It is about being proud of yourself when there isn't anyone else to tell you.

* It is about feeling good about you regardless of kudos going to charlatains and fakers.

* It's about dignity and grace.

* It's about soul and integrity.

* It is about being small.

* It's about shining too...as you....in all your purity...not shining for limelight but because the light IS you.

* It's about being.

* It is about your path...the sharing and giving of all your gifts....with no ties...no expectations...no conditions.

* It is about being a DO instead of a want.

*It's about being quiet when the words run dry. It is about comforting oneself. It is about stillness when you feel afraid. It's about being okay with the empty and lonely spaces in your soul.

* It's about you. It's about me.

* It's about love.

No use for toes

Okay so I will never be a ballerina.

Mostly my toes get used for lifting me up so I can see better in crowds as I am on the short side. Five foot two, eyes of blue, koochie koochie koo. Other than that, my toes don't serve much purpose other than peeking out from summer sandals.

A lifetime ago I actually did take a ballet class. I was a teen who always wanted to learn something new. I had absolutely no apptitude for dance but I looked upon it as a challenge. Forever a klutz, I thought that a ballet class would teach me grace. It was not to be, however, as this duck would never turn into elegant swan.

I remember the dance teacher coming around to give pointers and sometimes to grant us a compliment if we were found worthy. I grew weary of hearing the praises given to the other girls as the instructor would pass me by. The one day she paused before me as I was poised before the bar,and she gave me a gift. "You have very good balance," she decreed.

On the way home from class, I glowed. "I have good balance!" I repeated to myself. Me, the eternal klutz, had a newfound image of my body. Maybe I couldn't move with skill or grace but I could hold a pose without losing my balance. That was good enough for me.

My moods and interests quickly turned to other things...jewlery making classes...writing...and boys. My little pink ballet slippers found their way to the back of my closet.

Now here we are decades later and my toes have a different tale to tell. I am still very much a klutz but now I have a reason for my stumble prone nature. I have Multiple Sclerosis. One of the first symptoms I had felt prior to my diagnosis was a tingling and semi-numbness in my toes. That is where it began. Such a slight symptom, barely noticeable, but definitely there.

And balance? My old dance instructor might be dissapointed. I have lost my sense of balance. There are days I could not pass a sobriety test, not because I am inebriated, but because my lack of balance is yet another symptom of my MS.

It seems that the toes can be one of the first body parts to be affected by Multiple Sclerosis. Indeed one of the first symptoms many MS patients report as I did was:
"A "pins and needles" prickling sensation most often in your toes or fingers - like your foot or hand fell asleep"

There is also a reflex in your toes which may indicate neurological damage:

"Babinski's sign: A test for signs of disease process in the motor neurons of the pyramidal tract. The test involves drawing a semi-sharp object along the bottom of the foot. The normal response in adults and children is for the toes to reflex downwards (flexor response). In babies and people with neurological problems of the corticospinal tract, the big toe moves upwards (extensor response)."

Before I was officially diagnosed I could be found at home testing my own self for this Babinski sign by using the end of a pen up my foot. Come on...admit it...you did this too. Okay so maybe it was just me. My toes did funky things but I was never sure if I truly saw the sign or not. Self neurological testing at home...not for the faint hearted or easily confused by the directionality of toe movements.

So what was I saying? Oh yes...I will never be a ballerina. This was confirmed by my neurologist, who after performing real doctor tests in her office chided, "Well you are no ballerina are ya?"

And you know...I am okay with that. My toes are just fine about hanging out in sandals or comfortable sneakers. They have had their day in the sun and could wish for little more. Perhaps one day I will break down and treat them to a pedicure. I think they deserve it, don't you?

I Cannot Dance Upon my Toes

This is a poem by Emily Dickinson about toes.

I Cannot Dance Upon my Toes

I cannot dance upon my Toes—
No Man instructed me—
But oftentimes, among my mind,
A Glee possesseth me,

That had I Ballet knowledge—
Would put itself abroad
In Pirouette to blanch a Troupe—
Or lay a Prima, mad,

And though I had no Gown of Gauze—
No Ringlet, to my Hair,
Nor hopped to Audiences—like Birds,
One Claw upon the Air,

Nor tossed my shape in Eider Balls,
Nor rolled on wheels of snow
Till I was out of sight, in sound,
The House encore me so—

Nor any know I know the Art
I mention—easy—Here—
Nor any Placard boast me—
It's full as Opera—

Teasing Toes

I'll tell ya...with the day I had yesterday....I can use a little lighthearted fun! Between having MS symptoms and being told that my babysitter for my son is quitting....well...set me up with some martinis in the sun why don't ya so I can forget the world? In lieu of martinis...how about a flashback kids? Remember this movie...Flashdance? And the scene in the restaurant?

Toes...as in my previous posting....can indeed be a source of pain...but we all know that they can also be a source of pleasure. Enjoy. :>)

My focus is my child

I once wrote just that..."My focus is my child" scribbled with pencil and put on the wall for all to see.

Having a child who has a disability usually means that you are encumbered with numerous professionals, therapists, and experts, all of whom usually do not agree on anything.

Following one day when the speech therapist began to argue with the teacher about the best methods to use with my child, I put up that sign.

Years later, I find the need to put that sign back on my wall or on my computer screen as a visible reminder of what is important to me.

I have little interest in the latest causes or politically correct postures. Yes I could potentially stand on a pulpit all day and preach about acceptance. But you see I am here in the trenches with my son each and every day. No time for soap boxes because I am fighting for him and for myself. Sometimes a good day means we have survived the day.

I don't wear a ribbon or have a puzzle piece icon on my car (the symbol for autism nowadays). I don't have a bumper sticker which says "I love someone with autism." But I do. My lack of bumper stickers and ribbons doesn't mean I love my son any less.

My son isn't a cause. He isn't a badge for me to wear. He isn't my weekend project. He isn't a research study. He isn't a means to garnish comments on a blog. And he certainly isn't a poster child for autism.

He is a kid. He is my son. And I love him.

My focus is my child.

Integrity

I may write a lot of fluff at times but there are some things I take damn seriously. One of the things I most value is integrity. If you talk the talk I expect you to walk the walk. I am very upfront with the fact that I do not respect those who lack integrity.

So many people want to sound good...and parrot the politically correct thing...without any substance to back up what they say. I will not judge a person by what they say but rather by what they do. It is a cliche but it still rings true, actions speak louder than words.

We are a culture of wannabe preachers and cheerleaders...rah rah-ing for causes without a real and tangible act of caring behind the words. We can easily see this in our government with the lack of legislation to support words about our supposed values. And we also see it in its simplest form, in our personal day to day lives with the people that we know.

I have surely mentioned this before but my youngest son has autism. I have spent years now talking with other parents, I have been involved with numerous support groups, and I had been deeply entrenched in the world of autism. In the world of disabilities a strange thing happens. People who should be coming together do not. Why? Because they find ways to divide themselves into camps of belief and political position. I feel this is the way for all disabilities and disorders. You go onto an autism forum and people are inevitably going to be arguing over what is the best methods for helping their child. They are going to be arguing about causes of autism. And they are going to be heatedly discussing who has the superior belief system with regards to disabilities.

And what I began to notice rather quickly was...the folks with the biggest mouths...the folks with the agendas of glorifying themselves as the best parents...were exactly those who were ignoring their kids. The child became a prop, a backdrop for someone's need to be right or to gain attention. Where was the child amongst all this debate and hooplah?

The same damn thing happens on Multiple Sclerosis forums and boards. People will divide themselves up into camps of those who use medications and those who don't. People will argue over who is handling things better. I have even seen folk argue about whether someone's else's diagnosis is real or not. It seems people will fuss and argue for just about any reason.

In the meantime flesh and blood people get lost in the shuffle. The need for hearing oneself preach and pontificate overshadows the opportunity for genuine giving of support!

I am becoming less and less inclined to listen to, become a part of, or contribute in any way of such debates brought about by folk who are lacking in the doing department. Don't preach your values...show me.

On a very personal level I have seen such hypocracy in action. I have a nameless close relative who volunteers with children who have disabilities. Isn't that nice? I am sure she gets lots of kudos and praise for doing as such. But yet this same woman refused to look at, talk to, or hug my child. This wonderful saint as she portrayed herself wasn't at all accepting of my son. The real deal was...she just wanted to look good to others.

Anonymous in her blog...Self Injecting Chinese Hamsters wrote so eloquently recently about the difference between real care and acceptance and that which is detached and possibly self serving:

"My mother has become very active in the National MS Society. In and of itself, this is clearly a noble and laudable thing. However, when lending abstract institutional support (i.e. - fundraising, attending dinners and galas, etc.) becomes a substitute for the commitment of lending concrete, individual, real-life support to one's own child, then there is something perverse---and indeed, pathological---about it. My mother can be active in the National MS Society, feel good about herself, and tell herself that she is "making a difference," all while systematically ignoring me and my very real needs. The National MS Society is both a substitute and an excuse for not helping out or caring in any practical, hands-on way."

Of course there are many ways to look at things yet I believe anonymous makes an excellent point that...we get so caught up in mouthing words, glorifying our points, and taking up causes that we neglect real people!

I will not jump on band wagons just to promote causes or to benefit someone's ego. The real heroes are not the ones with the biggest mouths or the largest minions. The people who truly make a difference and who earn my respect are those who are actively living their values. These are the quiet souls who are living in the trenches and helping others because they choose to....not to get some secondary gain for existential validation.


Th-th-that's all folks.

Toes, marvelous toes...

We are beginning our new theme here on Multiple Synchronicities and Sclerosis with an up close and personal view of the human body. As per your request we are starting with the TOES and working our way upward.

And before you ask...yes these are my toes. They have never truly been captured adequately in photos or video. So they are making their debut here today on my blog. I am not really one to pamper my feet or toes...never had a professional pedicure or foot massage. My toes are usually bare of any fancy acoutrements. I have never worn toe rings for example.

Toes, toes....these poor forgotten appendages. We seldom think of our toes until they bring us pain as when we stub them in the middle of the night on our trips to the bathroom. That is a pain which causes me to feel nausea. It is like no other.

What can one say about toes? Plenty I say. There are whole poems and songs dedicated to our toesies as well as the devotion of those who have a toe fetish. There is a plethora of toes to be found in art and literature. And of course...aside from any romantic idealization of toes...they sometimes can be the first recipient of Multiple Sclerosis symptoms which we will discuss in future posts.

If you have anything to add to this fine and worthy discussion of toes such as toes found in art, literature, music, essays, and even your own imagery of your personal toes...let me know and we can add it here.

Raise your glass everyone! Here is a toast to TOES!

What kind of Multiple Sclerosis Blog Is This???

If I can categorize all of the "dealing with some disease or disorder" blogs into two extremes, there are the "I can climb every mountain" memoirs and then there are the "Gather heather for my hair because I wish to have a dramatic movie moment" kinda blogs.



Then there is my blog where I barely talk about my disease. I know...I need to get with the program. I really do need to start talking about all those things that I never did before like mountain climbing and how I simply must start doing them now that I have Multiple Sclerosis. Let's add on hang gliding and how about I add on lion taming just for the hell of it. Then I can make motivational speeches across the country of how I have conquered my MS and YOU CAN TOO!

Mind over matter right? And just think positive! This MS thing...why it is just a fig newton of your lively imagination. Having symptoms? Having a bad day? You slackers! Just will it away and have a bright and superduper sunny day!

On the other extreme lies the gloom and doom side. Everything is rotten. Nothing to be grateful for. The world owes me dammit! I have a disease! What? You say the world and its inhabitants don't suck eternally? Damn you to hell for negating my world view! Everyone else...they have it easy. I am alone in this uncaring world. Nobody understands my paaaaiiiiiiiiiin. I am the only one who has it this hard because I...I am so special to have all of the world's hardships and difficulties on my frail little shoulders.

"Nobody know....the trouble I've seen.....nobody knows the sorrow."

Okay so I am being a wee bit melodramatic myself here. Seriously....most blogs about dealing with health or mental challenges fall in between these two extremes. Most folks just simply write the truth of their experience as they see it. Most people who are dealing with rough times are coping day to day the best way they can. And sometimes you vascilate between the two aforementioned extremes. Sometimes a little Pollyanna doesn't hurt and sometimes you do need to vent and get it all out.

Nobody....I mean nobody...said this would be easy.

When I have my small bouts of symptoms...not being able to walk, not being able to talk, hell...not being able to think....I am reminded that...I ain't seen nothin yet. Sure...there is more to come. I know this. But I absolutely don't want to talk about this all day long. I am going to say something....possibly...offensive here but...having a disease...is dreadfully boring. If I want to keep any of my friends I cannot be sitting around talking about my MS all day. I am more than this disease.

I have MS. MS doesn't have me.

Yes I want to talk about it. That is why I have this blog. But I don't want to limit myself to just talking to other people who have MS. I refuse to barricade myself like that. It isn't healthy.

So my readers will have to excuse the fact that, while I do have a blog about MS, this site is more about.....me.

Now gather me some heather for my hair before I climb that mountain. Oh wait...maybe I will just stay here....and talk to you. Yes that is exactly what I will do.

Coming soon to a blog near you...

This was kinda fun to have an on-going theme on my blog. Of course we will continue to celebrate love...every day can be Valentine's Day...but I am thinking of an additional theme which may prove to be very interesting to write about.

The Human Body

That's right. Let us explore the human body with all of it's mysteries, wonders, and vulnerabilities.

My only question is...shall we start with the toes on upward or work our way from the top down?

Happy Valentine's Day!

Happy Valentine's Day

To all my dear friends

Peace and love to you all.

xxxoooxxxx

Merely Me

Passion Poems

It is time to kindle the fire....

Too much busy-ness. Too much logic. Too much serious contemplation.

Bring in passion.

It will be valentine's day in but a couple of days....and I have not forgotten our little love fest. So get comfy, rest your weary head, and invite the sirens of passion to carry you to another realm.

Here are some passion poems for your pleasure.

This first poem was written in the 9th century by Ono no Komachi

"I long for him most
during those long moonless nights.
I lie awake, hot
the growing fires of passion
bursting, blazing in my heart."

I really love this one as well...

This was written by Izumi Shikibu during the same time period:

" My black hair tangled
as my own tangled thoughts
I lie here alone,
dreaming of one who has gone,
who stroked my hair till it shone."

This one is by Ikky Sojun

"At midnight, your face in a dream brings a sigh.
Ch'us love pavilion was long ago and far away.
But like a blossom on the flowering plum,
sweet narcissus blooms between your thighs."

Oh yes...i do so like that imagery...sweet narcissus.

Just one more for now...

This one is by Kabir

"Sometimes, everywhere I look,
O my love, I see your radiant face.
With you ever present,
how could I close my eyes to anything?"

I wonder if I love that one the best. So simple yet full of life. Love is like that isn't it?...an opening to the world. All at once the heart opens to sparkling clarity. Colors are more vibrant and true. The world is a ripe and succulent peach tinged with morning rain sweetness.

Functional Dysfunction

I have always known that something was up with me. I have never felt...well...normal. But then again I dare anyone to clearly define what or who is normal. I am thinking more and more that we are all on some sort of mental health spectrum.

Look at what has happened with the disorder of autism these days. The spectrum is wider than ever, with growing numbers of people being diagnosed who would have never been diagnosed with this before. People we would have thought of as geeky or a little off center now have "autism." I hear stories about Einstein and even Bill Gates as being autistic. Poor Einstein has been adopted by many groups as having all sorts of disorders I am sure he never gave any thought to while alive. I am not sure what to make of this trend. I am thinking that I don't like it as you end up with so many people competing for services when clearly there are folks who have far more impairments than others.

Should someone who has Asperger's Syndrome(a mild form of autism) and is high functioning, holds a job, and gets along in the world adequately speak for someone who, at the same age, is non-verbal and needs constant care? Should they really be thought of as the same group bearing the same label?

It is with this over generalization of labels in mind, that I am reluctant to say what I am about to say.

I am feeling much more than a kinship with those who have bi-polar disorder. I believe it is a spectrum disorder as well, and now this is being reflected in the DSM to diagnose and differentiate between mental disorders.

There is a great danger to diagnosing oneself. You can now go on-line and look up symptoms and find all sorts of could be's. I must say, however, I have had some experience. I *knew* about both my son's autism (I had worked in the field though) and I also *knew* that I had MS long before anyone officially told me.

Yet my mood has bewildered me my whole life. I had been diagnosed with depression years ago in my twenties but nobody has ever spoken of Bi-Polar Disorder. Then again, most people don't talk so much about the highs as a problem. Why would anyone want to feel less happy, less energetic, and less productive?

I have always tended to relate well to others on the mood disorder edge. I have had more than several friends who have close relatives with Bi-Polar I Disorder. I would listen to their tales of a mother, a father, a sister, or a son....who might get up at three in the morning to prepare a four course breakfast, dance on top of their car because they felt like it, attempt to sell their house without their spouse's knowledge, quit their jobs to drive cross country only to end up homeless, exercising for eight hours, buying large ticket items like pianos...even when they didn't know how to play the piano, being so upset that they might hide under their desk at work, fly into rages at slight provocations, and making suicide attempts that ultimately lead to hospitalization. We tend to hear about the extremes and then in comparison we always think...no that is not me. That has never been me.

But then we come to realize that there are gradiations...levels of severity. Mood disorders will not manifest in the same way for everyone. Many people who have mood disorders hide them well. There are people who function well to the outside world, but are dealing with an inner hell.

I feel I am one of these people. I have never been hospitalized. I have never engaged in too risky of behaviors. Whatever it is I have has not led me to lose everything. I am fortunate that I have never hit a rock bottom mood. Yet this in between, every day, cycling between moods has been extremely difficult.

The closest answer I have come to recently to explain what I am is Bipolar II. While I have never experienced the euphoric extreme highs of mania....this term of "hypomania" is a darn descriptor of how I do feel some days. It is always within the realm of functional behavior and in my opinion this is when I feel the best. I am energetic, full of personality, creative, and ever productive.

I found this on the web to help explain:

"Hypomania

Technically, this is literally "little" mania — the familiar symptoms but less so: Mood much better than normal Rapid speech Little need for sleep Racing thoughts, trouble concentrating Continuous high energy Overconfidence

You may have noticed that "delusions" have disappeared from the list: these are by definition not found in Bipolar II. A patient who has had the above symptoms repeatedly, without having delusions, is much less likely to lose contact with reality (including abnormal perceptions such as auditory hallucinations, which are common in bipolar mania) than a patient who has experienced delusions.

"Bipolar II" is technically the combination of hypomanic phases with separate phases of severe depression If the depressive phases are only mild, the term "cyclothymia" is used."

And then this:

"Roller coaster depression

Many people have forms of depression in which their symptoms vary a lot with time: "crash" into depression, then up into doing fine for a while, then "crash" again — sometimes for a reason, but often for no clear reason at all. They feel like they are on some sort of mood "roller coaster". They wonder if they have "manic-depression". But, most people know someone or have heard of someone who had a "manic" episode: decreased need for sleep, high energy, risky behaviors, or even grandiose delusions (‘I can make millions with my ideas"; "I have a mission in space"; "I’m God"). So they think "well, I can’t have that — I’ve never had a manic episode".

However, the new view of bipolar disorder means it’s time to reconsider that conclusion. Hypomania doesn’t look or feel at all like full delusional mania in some patients. Sometimes there is just a clear sense of something cyclic going on. (For a striking version of this, read a patient's account). Some mood disorder experts consider depression that occurs repeatedly to have a high likelihood of having a manic phase at some pointFawcett, especially if the first depression occurred before age twenty.Geller, Rao These two features--repeated recurrence, and early onset--are also included among the bipolar "soft signs" below: not enough to make a diagnosis, but suggestive, especially if they occur with several other such signs--even if "hypomania" is not detectable at all!Ghaemi "

This information was gleaned from this site about mood disorders which I found to be most helpful.

The last thing I want to do is misrepresent myself or minimize what anyone else is going through. I peer over the edge of how much further I could fall during a depressive episode and also how much more I could fly into a dysfunctional and life threatening euphoria and I realize that the scope and range of mood is seemingly infinite.

Some people have to endure such extremes and although I get a glimpse of their world I can never truly know what it is like. I only know my world.
I am here...I am some outlier of a data point....off-center....neither here nor there...in some sort of limbo world of ever changing moods.

Does one really need a new label? Hell no. Believe me, I have enough on my plate as is. I certainly don't go searching for dysfunction. But it seems a relief to me to know that there may be a name for this. There is some logical explanation for the days of being on top of the world and the next....cascading to the depths of despair. It helps me to know that there is a reason for this hellish chaos.

This is my stuff. My moods. My issues. I am responsible for me. But it also helps tremendously to understand what I am dealing with. And now I know I am not alone.

The writing is coming...

I am doing well. I am getting things done. But somehow I always manage to feel less than because I see all the many things I haven't yet gotten done. Just think...until the day you die there will be unfinished things. Like the baby blanket you were crocheting before the baby came and now your child is twelve years old. There will always be bills to pay, laundry to wash, meals to prepare. It just keeps going.

On another note...

My writing is finally coming. Because I am forcing myself to just do it. I have a wonderful opportunity and I will not mess things up with my procrastinating ways. I have a publisher interested in me and my ideas. The book which I have been talking about for over three years but never wrote ONE word in all that time....I am finally writing. I needed an external push and I am getting it. I am so fortunate and so grateful. I am being given a shot...I will not mess this up.

I am on my path and I will persevere.

No Time

I have no time for MS or depression these coming weeks! I am too busy!

Do you think it is possible to keep these beasts at bay as I have too much to do?

"I am responsible for my life!"

I had a dream just hours ago where I woke up saying this practically out loud.

It was a dark nightmarish dream. I dreamed I was in this village or ward or institution...I couldn't tell...where the inhabitants went wild every night in violence against others or themselves. Each morning someone would be dead.

At first I was fearful for myself but then I just wanted to help. So I gathered people up during the day and told them this could no longer be. They had to stop this.

And one teenager girl sitting on a chair began to spew..."You haven't been abused your whole life...you haven't seen the things I have." And this...made me billow up like a storm cloud and I raged in her face...listing everything in my life I had gone through...all the things she had and more.

I found myself yelling, "You have to own your stuff...all of it! Nobody is responsible for you now but YOU!"

In my last fit of emotional machismo...I continued to rage by pointing a finger at myself and saying...I have been through fucking and hell and back but...

"I AM RESPONSIBLE FOR MY LIFE"

I have no clue as to what prompted my dream but...I still am feeling the emotional residue of it. This isn't something I would declare to anyone in real life. But evidently it is the truth of how I feel.

I suppose I still have a lot of anger for those people in my life who would not or could not take responsibility for themselves.

And I am still so very angry.

merelyme X three!

Balance & Perspective

I have been trying to seek balance and perspective lately. I know that it is a process...it is something you cannot instantly achieve.

We are all so small really...just little specks of life in the universe...but also we are all so great in that what we do sets about a series of chain reactions which could ultimately change the world. Actually I do believe we change the world each day we exist. I want to believe that. It is certainly better than the alternative.

I am trying to pause before choices and actions and ask myself..."Is this good for me?" "Is this mentally healthy?" "Is this a part of being on my path?"


The thing is...you never really know the value of a choice or action until you have done it. At that moment before grasping the ring...all values can be entertained. It could be a "good" choice or a "bad" choice...we don't really know until we have taken it. This ambiguity...this uncertainty...makes for chaos and fear. We don't know what tomorrow will bring. Nobody owns the proverbial crystal ball.

So we leap over great chasms, risking and daring, and praying and hopig that we don't break our necks in the process. I suppose this might be what some people call faith...trusting that we will be able to make those leaps again and again.

Perspective: We are both infinitely small and great within the universe.

Balance: The ability to see ourselves from these small and large lenses.

Love Song

I have been hearing this song everywhere lately but only the first couple of refrains so I had to hear the whole thing. It is quite good I think and appopriate for our love theme.

And for best romantic movies of all time...

the award goes to....

What do you feel are the best (five) romantic/love movies of all time?

I need to think more on my list but off the top of my head would be....The English Patient and Wuthering Heights.

More thoughts on the Lip Lock

In tune with our Love Fest I thought it would be fun to continue our discussion of the topic of kissing.

Remember when you were a teen-ager and you could kiss for hours?

Where's the chap stick?

In my memories I found...that the best part of kissing are those moments right before the kiss. You know it is coming but you don't know exactly when. There are the lingering soulful looks and the other person's pupils become enlarged and you want to fall right in. Everything slows down....you can feel your own breath...and you wonder...gee...hope my breath doesn't stink! LOL! Okay where was I? Right...feeling your own breath...feeling your own heartbeat...you gasp a little breath....as there is this movement closer.

Hold it...hold it right there. Freeze that moment. You stand poised and ready...everything tingling...electricity so great it could set things on fire....it is unbearable...the tension...but you are not quite touching yet.

There is crossing...a boundary....an invisible line...where you know if you cross it...there is no going back. You have held this kiss in fantasy...but this moment is the real thing. You know it is coming...and you also realize that once you experience it...you can't ever have it again because it is the first time. It is like falling into water...gravity pulls you towards....that impact.

At that exact moment the world falls away...there is only here and now and the feeling that you must move forward and cross that line. You slowly inch forward by fractions of an inch. It is quite tortorous but wonderful at the same time. And just when you can't stand it any longer...it happens...close the eyes and melt away....feeling the power of that first touch of lips against lips...warmth envelopes you and you savor it... holding on as long as you can until you have to breathe again.

A little gasp exits your lips as you slowly....break away.

Was it good for you too? :>)

Life is like a box of chocolates...

so which one do you like the best?



I don't know about you but I looooooooove chocolate. Can't ever have too much chocolate. People who know me well know that you just can't go wrong giving me a Whitman's Sampler box of chocolates.

Mmmm.....I am salivating already.

So when you open your box of chocolates what do you usually go for first?

1. The Chocolate covered cherry

2. The cream filled

3. Chocolate covered nuts

4. Chocolate covered caramels

















5. Or something out of the box as in hershey's kisses!

i am a little worried...

i am a little worried about +PHc

she is in the hospital it seems. i guess all we can do is wait?

Meds, meds, meds

let's talk medication shall we?

i will do a post later about Sam-e....which has been very helpful....but perhaps time limited in its effectiveness as demonstrated by one case study...me.

lisa and jim....you had some really good comments about meds....i was wondering if you could repeat them here.

i am talking about meds for depression. i guess it doesn't matter the origin of the depression: caused by multiple sclerosis or the drugs to combat MS or just straight up depression.

I will pose my questions here:

What, if any prescription drugs do you or have you used for depression? We will talk about natural supplements in another post or posts.

1. How long had you used the medication?

2. What side effects did you experience and please don't hold back about discussing sexual side effects.

3. What happened if you missed a dose?

4. Were there dangers of other meds, vitamins, supplements interacting harmfully with your med of choice?

5. How long did it take to make a difference?

6. Could you easily get off the drug if you wanted to? Or is there side effects of sudden withdrawl of the drug?

on another note....

if you here for the love fest...see post below. the topic is kissing. :>)

The First Kiss

Do you remember your first kiss? I do and I will tell you all about it. But first do go on tell us your story. It is time to put away depression...pack it away...stick it in the basement or attic and let's continue our celebration of LOVE.

----------------------------------------------

My first kiss

I was ten. And he had red hair.

I was living in the inner city in a row house. Down the street was a home for children. I am not sure if the children were orphans or wayward or what. But the red haired boy lived there in that big house with the huge porch. And he liked me.
I rode my bike a lot. My bike had one of those banana seats and a basket...white with a daisy on the front. I rode it everywhere within the parameters of my neighborhood. It was pure freedom...flying down the hills or even the concrete stairs of the nearby high school. I would stay out until the street lights came on. This was the sign to come home again. But until dusk I could go where I pleased.

And it pleased me to pass by the red haired boy's house.

He waved at me one day and the next day too. On the third day he got out his bike and trailed along with me. It was glorious...the wind and the red haired boy behind me. We traversed the hills and sidewalks of our neighborhood together. It was exhilarating.

We would sit on the curb across from Vern's, the corner store. I would make chains out of gum wrappers. We would sit and talk. And then it happened.

The kiss.

I wish I could recall the kiss with any clarity, but the memory is too clouded over by what happened next. I was so excited. That evening I rushed home to the buzz of the street lights coming on and exclaimed for all to hear, "I have a boyfriend! And he kissed me!" My older half- sister who was visiting my mother and me from college, wanted to know all the juicy details. I told her everything and being the older sister, she thought it was very cute.

But this first kiss wasn’t “cute” to me. Why it was love!

I remember feeling like floating. It was a feeling I had never experienced before. I could not wait to see him again.

The next day I went out on my bike, flushed and hopeful. It was then that I saw a glimpse of him sitting on the street corner. As I rounded the bend I saw something else. Someone else. A girl. Sitting with him. They were laughing. I rode slowly by as my heart sank. I waved but he didn't see me. His eyes were riveted on his new friend. They moved closer together and…I quickly looked away, almost driving my bike into a pole. I couldn’t bear to watch.

And just like that it was over. I had been so easily replaced.

I rode away...far away from that corner. I found a new curb to sit on. Alone. With my face cupped in my hands I wondered how the same boy could make me feel so special and so unspecial all within the span of less than a week.

Within a couple of days I had experienced both my first kiss as well as my first heartbreak. My first lesson: Love and loss sometimes go hand in hand. Oh and never kiss little red haired boys with wandering lips.

thank you...

you guys have been so kind to me...so supportive...so nice. i just want to thank you. it helps so much to know that i am not alone and that others experience this too.

i feel a great amount of hope and grattitude today. i am working very hard to get better.

you all are so wonderful....