Soul Food

I am in need of some soul food how about you?

There are days one craves something spiritually nourishing. I often look towards songs, poetry, and books to keep the Noonday Demon (depression) at bay.

When I was first diagnosed with my MS, there was a song on the radio which was absolutely hypnotic. I found myself singing and simultaneously crying to the words of Anna Nalick's Breathe. The refrain is one of the truest things I could hear:

"Cause you can't jump the track, we're like cars on a cable
And life's like an hourglass, glued to the table
No one can find the rewind button, girl.
So cradle your head in your hands
And breathe... just breathe,
Oh breathe, just breathe"

You can't go back in time. You just have to keep moving forward into a sometimes very frightening future. But in the meantime...take a breath...and breathe. It is all anyone can do.

A good song does this, it speaks to the individual and it speaks to us all. We find our particular message in the global one.

This song helped me to keep going even if it was from breath to breath.

Poetry is made for reviving the soul.

Emily Dickinson does it for me. I love her understated simplicity. She has no airs about her. She is pure and as simple as a smooth stone found in a meandering creek. The water rushes by her and she feels everything. And in return she gave us her gentle words.

I am most fond of her poem, I'm Nobody. It appears, on the surface, to be self depreciating. But in reality, she captures the essence of a true soul, wishing to be small and intimate. There is a special dichotomy for every writer who puts themselves out there. We are public, yet anonymous. There is a private side to the writer which shall forever remain a mystery. Only a select few could ever delve into that core.

"I'm Nobody! Who are you?

I'm nobody! Who are you?
Are you nobody, too?
Then there's a pair of us--don't tell!
They'd banish us, you know.
How dreary to be somebody!
How public, like a frog
To tell your name the livelong day
To an admiring bog!

Joy Williams in her essay on why writers write entitled, Uncanny the Singing That Comes from Certain Husks also picks up on this theme: "The writer is an exhibitionist, and yet he is private. He wants you to admire his fasting, his art. He wants your attention, he doesn't want you to know he exists."

Thank god someone understands this. These are but parcels of myself which I have grappled with for many years.

And finally I offer you some wisdom from a little saint. I am not religious. I am not even Catholic. But I have come to truly enjoy reading about saints lately. I like them because they are...surprisingly...very unsaintly at times. Most of the saints were very extremely human, dealing with all the things we deal with in our day to day lives. They lived and breathed and cried and made mistakes and struggled to find their way.

Little Saint Therese of Lisieux is probably my favorite saint of all. In her Autobiography of a Soul, she illuminates the most amazing strength from being small. She strove to embrace the ordinary, the small, and the intimate over some appearance of being holier than thou. I love her because she was/is real.

There is a small book written about her called, "The Love That Keeps Us Sane" and this was written by Marc Foley, O.C.D. This book is less than one hundred pages but it is packed with sustenance for the soul. I have read it ten times over, I have outlined it, it have secured pages for reading by bending down the corners of the pages. If I am having a troublesome evening, I read it before going to bed to soothe me. I can't say enough good things about it.

Here is but one passage which has helped me immensely and I hope it helps you too.

"What we often choose to fight is so tiny, and we become small in the process. The more we choose to become absorbed in the trivial battles of daily life, the more petty we become and the more our emotional life becomes fixated on things that don't matter.

When I find myself spending a hundred dollars of emotional energy over a ten-cent issue, I try to remember the wisdom of St. Therese and ask myself the question, "Is it really worth it?" Many times I have won an argument but walked away the loser because my peace of soul was lost in the process. In the wake of so many arguments, our ego may experience the momentary satisfaction of having won, but what have we really gained?

When Celine made her profession, Therese made her a coat of arms with this motto on it: "The loser always wins." This motto is applicable to many situations in life. We often win by saying nothing because silence preserves our piece of soul. What good does it do to defend or explain ourselves. Let the matter drop and say nothing...O blessed silence that gives so much peace to souls."

Therese learned that to defend or explain herself in certain situations was useless.

When Mother Genevieve died, Therese's relatives and people who worked for the convent send wreathes. Therese arranged them around the coffin. Sister X said to Therese "Ah! You're well able to put the wreathes sent by your relatives in a prominent place aren't you? And you put those of the poorer families in the background." To this hurtful remark Therese said, "Thank you, Sister, you're right. Give me that cross of moss the workers sent, and I'll put it out in front

."

Therese could have defended herself, but she chose not to. She knew that it wasn't worth it. When someone resents us, as Sister X resented Therese, she is not going to listen. To fire back in such circumstances would be futile. Therese also noticed that she felt despondent and ill at ease with herself after she didn't control her tongue in such situations.

She labeled these feelings as the temporal punishment due to her sin, a sort of psychic residue that lingers in the soul. In short, she lost her peace of soul. Conversely, she noticed that whenever she held her tongue, or recast her words in charity, she experienced peace."

And on that note...I do hope that all of you experience some peace this weekend, whether it be by relaxing the body, mind or spirit. Have a wonderful Labor Day weekend.

See you soon....

Merely Me

Sometimes you can scare yourself just by looking in the mirror! AHHHH!

Little Mew Mew had a time of it when she saw her first reflection in the mirror, this little puff ball of a cat, grew to twice her size. She looks like one of those scary Halloween cats.

I was thinking this would make a great opening to some things that have been on my chest this week that I really need to get out.

I haz...a widget. I put it...um...down there...somewhere on the side. Yeah that one. Looking at it frightens me. AHHH! Who in the hell is that? I am gonna be straight up and honest with you, as I always have been.

I AIN'T NO EXPERT.

Okay just want to make that point clear. Truly. I am not. I do not like that title whatsoever. Maybe some people would love to embrace that. I do not. I have already discussed the terminology from the very beginning with my editors over at the health site I am writing at. I am not a neurologist and I am not a doctor. But I do have MS. Let me show you my lesions! I am no war horse or martyr about to tell people of my long struggle nor am I gonna be talking about miracle cures and climbing mountains. I am just me. Merely Me.

I am also writing about depression. And again. I am no expert. I suffer from it. I write about it.

As I look in the mirror what do I see? I guess I have had many roles in my life. I have been a friend, daughter, sister, wife, mother, student, developmental therapist, homeschooling parent, and writer. I have had many life experiences some tragic and some joyous. In my life I have dealt with losing a parent at an early age due to alcoholism, living with a mother who has schizophrenia, living in poverty, dealing with sexual and physical abuse, the grief of losing friends to illness, losing a baby, infertility, autism, Multiple Sclerosis, and of course last but not least depression. Life sure has been eventful.

The joys? Connection, love, and friendship.

And writing. Writing is my solace. Writing has literally saved my ass. I am not writing to be some damn expert or get blog links or a talk show. I write because I have to. I write because if I didn't, I would surely drown.

There are tons of folk who could rattle off a similar life history. But you know what? There is no badge of honor for surviving life's bullshit. Some people wear their pain as that badge of honor to deny other people the right to their own pain. There will always be someone who is dealing with something worse than you. Guaranteed. But it doesn't mean that your problems or issues are trivial or do not count.

And likewise, nobody owes you anything for having a hard life. The world does not spin around on its axis to make you happy. Regardless of your issues, your pain, your challenges, you have to make it with whatever you are given. Life is infinitely unfair for all of us.

Been thinking about friendships a whole lot this week as well.



I will tell ya...never thought that these two would be friends. But they are getting along like two long lost buddies.

These past weeks have been an emotional roller coaster for me. Between medical tests and scares and MS crap and also beginning to do some freelance writing...I have been a little bonkers. So what else is new? I am not always a good friend. I get moody. I hide. I am a hermit some weeks. I have my moods. But I have never pretended to be anything but what I am.

Good friends? They are there when nobody else gives a damn. They care about you when you have gained twenty pounds, you forgot to use deoderant and you come to the door looking like the jabba the hut. Good friends are also there when you experience the good stuff...a success...a mental reprieve from depression...or a new job. Good friends are transparent in their care for you. You don't have to think or wonder about motivations. They love you unconditionally...angry, depressed, messed up, ugly, bitchy or silent. They root for your happiness.

Good friends don't care about how much money you make, or how many blog hits you got today or what a good samaritan you appear to be. Good friends see through all the bullshit and will tell you straight up what they feel.

I want you all to know...when I was talking to my editor over at the health site, I talked about all of you. It probably was foolish on my part. I didn't have the job yet and...I just kept thinking about how many of you...are dealing with so much and have dedicated yourselves to reaching out beyond your issues...whatever they may be...MS or depression or illness...or just life in general. And...I told her that we have such a strong little community here with some amazing bloggers. "May I talk about my friends on the site?" I am still not quite sure how much of that I can do but know that I want to.

I will be keeping my blog here as is. I do not have this blog on any google searches or on the blogger list nor do I want to do that. This is my personal blog. Some of you have been with me through several or more reincarnations of blogs. When I found out I had MS...I decided to run with MS as the theme because this is what I am currently dealing with. But certainly it isn't what I am all about. I remember my friend Dirk bellyaching that I was gonna be one more of those boring illness blogs. I hope I have become more than that. :>)

My links to people....believe me...I am selective. If you are a bullshitter, pretender....off you go. In becoming immersed in the wrtiting world of both books and on-line writing, I am struggling with maintaining integrity and what that means for me. I have the self confidence now to actually say that I am good writer. Writing does involve promoting oneself. I am trying to do this in such a way which never diminishes me as a person nor undermines anyone else. I am quickly determining what is real, what is not, and putting blinder's on to that which is irrelevant.

I may be moody, crazy, out there, but one thing guaranteed with me...what you see is what you get. My names may have changed over the years with different blogs but I am always the genuine article. I remain...

Merely Me

Lots to share!

Hi guys!

I hope you all have been surviving the week so far. I am tapering off the Prednisone as we speak. It has been a wild ride my friends! I was told by someone that Prednisone makes you feel Hungry, Hostile, and Horny. I got this image of someone angrily eating a ham sandwich, muttering obscenities while engaging in the horizontal mambo. Okay strike that...not a pretty image. It has been the exact opposite experience for me. I am not eating, manic as all get out, and well...I will leave the libido part to the imagination.

My hypomania has served me well this past week. My house has never looked cleaner, I am exercising, and I am writing like I have never written before. I feel pretty good except for this jitteriness which makes me want to keep moving even while sitting still.

Little Mew Mew the Kung Foo Kitty is doing good as well. We are almost done with the antibiotics for her and she has finally stopped sneezing. She is using her litterbox and I am thrilled. I feel like a true mama, proud that her baby is pooping and peeing in the right place.

Wanted to share some of my writings with you guys which won't be showing up here as posts on my blog. I have much to be thankful about lately. One of the big things I am grateful about is the opportunity to make a difference and reach out through my writing. There were certain times in my life where books and writing was just about all I had to keep me going. Now as an adult, I have the ability to give back just a little, through words.

Anyways...I would be most honored if any of you would care to read my writings through the following links.

I humbly offer you:

A Day in the Life
The New Kid on the Block

I've Got a Bad Feeling In My Gizzard About This

and

The Depression Files

Just snap out it!

I have a craving for...

This!

I haven't had one in years I think.

What do you have a craving for?

The new kitty and other news...

Merely Me here to bring you the latest minute to minute updates of my oh so exciting life!

* I now am more brunettey than blond. I asked the hair dresser to make me darker. I have no idea why. You ever get the idea that you just need a change? And what is the first thing we gals go for? Our hair. I am a blond in my heart and soul so I am already planning of when to change back.

* I am now on day four of taking 60 mg of the Prednisone for my MS flare up. The MS is like this little wicked demon living inside of me. Despite this kick ass drug, my MS still emerges at inopportune times, like in the middle of my sleep. I have surges in my head causing me to shudder like before but now they only last 5 minutes instead of 20 and the surge does not travel to my limbs. Those surges had been pretty powerful. Afterward, I would look at my forehead and this one vein would just pop right out. Just one of the many bizarre things about MS. Gotta love this disease.

* Can anyone say....hypomania? Yep, that's me! This Prednisone has finally given me the huge energy boost. Yesterday I cleaned my entire house, I was exercising, and I was about to make a seven layer cake and alphabetize all the books in the house when reason stepped in and I took a break.

* Little Mew Mew the Kung Foo Kitty has been seen by the vet and is doing pretty good. She came from the animal shelter complete with an upper respiratory infection. Nice. So much snot coming from this itty bitty creature. And to boot, she doesn't get the litter box thing, so upon a suggestion from my sister, we are crate training her. We have her litter box and bed in a big 'ol crate carrier and there she goes especially at night, so she can learn where to go potty. I think this is working. I have only ever gotten full grown animals before. This is my first kitten. When she is feeling good she practices her kung foo moves on whatever moving creature is available, even her own tail. And now I have photos of her!

* Feel free to think of a LOLcat type caption for my kitty pics. You do know what a LOLcat is don't ya? Do I have to explain everything? sheesh!

Writing Inspiration

I have been on a roll with my writing lately and I do hope it continues. I am feeling good and purposeful and committed to staying on my path. It inspires me to find writing which validates my own gut felt truths.

One of my favorite reading topics is the personal life of the writer. Quite often I am much more intrigued by the thought processes and personal stories of the writer more so than the writing itself. I have found some inspiration today which I will now share with you.

It feels good to find substance which causes one to reel back and say, "Yes, that is it exactly! Thank you for putting into words, what I feel to be true."

I do like the compilations put together of writing bests. One remarkable set of writings can always be found in "The Best American" series which designates different writing genres such as best short stories, best science writing, and the one that I am reading now is "The Best American Essays" (the 2001 edition). Someday I should like to earn the right to be in such a book. It is most likely a pipe dream but where do most great things start? With a dream.

Kathleen Norris, writes the introduction for this particular edition, with "Introduction: Stories Around a Fire."

I will share some select passages which resounded with me. Norris writes about the words of one escort as she was on tour promoting her latest book:

"On our last day together, my escort said to me, "I think I get it. You're a real writer." Surprised, I asked her what she meant. "I mean," she replied, "you didn't write a book in order to get a radio talk show." Her experience to date in the Book Biz had been with self proclaimed counselors and spiritual gurus who regarded their books as steppingstones to greater things. And the escort quickly realized that she was merely one of the "little people" they would use and discard on their climb to the top. Authors screamed at her over trivial matters; one writer of a book on relationships banished her from a bookstore because she was "giving off negative energy" and then appeared a few minutes later preening and smiling before the audience, a model of calm assurance. A psychic phones her at 3 am to see how many copies of her book were in the stores they were to visit the next day. Because she wanted to keep her job, the woman did not respond by saying that if she were truly a pyschic, she would already know."

Norris goes on to describe the caliber of writers in this edition of Best American Essays: "It is safe to say that none of the writers in this book are struggling to put words on paper because they want a radio talk show or syndicated column of the daily newspaper. They don't want anything at all other than to tell a story, to explore an idea or situation through the act of writing. Unable to escape the sense that this story must be told, the writer of literature more or less reluctantly concludes, I am the person who must tell it. Or try to tell it. An essay, after all, is merely an attempt. It has no presumption of success and no ulterior or utlilitarian purpose, which makes it unique, a welcome open space in the crowded, busy landscape of American life."

And lastly Norris concludes:

"A genuine essay feels less like a monologue than a dialogue between writer and reader. This is a story I need, we conclude after reading the opening paragraph. It will tell me something about the world that I didn't know before, something I sensed but could not articulate."

There are as many purposes and motivations to write as there are individual writers. Writing is more than an art form. It can also be an occupation, a paid for profession. One does not have to be a starving artist in order to feel good about their creations. Yet reaching beyond the promoting, marketing, and publishing pursuits is the core of a human being. There, at your gut level, motivation and intent are important. I never wish to become a rat in a maze, seeking the next best thing around the corner, with no understanding of why I am in the maze to begin with, and with no knowledge of what constitutes the "prize." I am a romantic at heart and I do believe in a core self based upon integrity and a congruence with self. The prize for me is in releasing the stories from my mind, and setting them free to live on their own.

Joy Williams in her essay, "Uncanny the Singing Which Comes from Certain Husks," explains the drive of the writer in the best way I have heard yet.

She writes: "The writer doesn't write for the reader. He doesn't write for himself either. He writes to serve...something. Somethingness. The somethingness that is shelter by the wings of nothingness...those exquisite, enveloping, protecting wings."

Yes! That is it exactly.

I hope that this has inspired someone today. So commence to writing. It is good for the soul.

To save a life

I have always had pets. I have had pets when I wasn't supposed to have pets. There was the time I snuck two cats into an apartment, saying I was cat sitting for a friend. I suspect the landlord knew the truth, especially when the cats never left, but he graciously let me slide. There was no way I was going to give up my kitties.

The pets I have had, with the exception of various rodents and fish, have always come from the local animal shelters. I do believe in saving a life. There is no particular breed of dog or cat I simply must have. I like to think that the animal has just as much choice in the matter of choosing me as I have of choosing them. So for these reasons I go to the animal shelter to find my pets.

When I went to our local shelter to find a kitty this past week, it was truly a heart wrenching experience. As soon as the shelter opened to the public, a small line had formed behind the desk. There seemed to be two types of expressions on the faces of the people coming into the shelter. Some faces showed the joyful anticipation of seeking a new furry footed companion to bring home. But the other faces showed the pain and anguish of having to give up a beloved pet.

It is in all the newspapers lately. This economy has driven some people to have to give up their pets because they simply cannot afford to care for them any longer. Let's face it, pets cost money, sometimes lots of money. Between food, and toys, and especially the vet bills, some people just can't do it. Granted, there are many other reasons a pet will be sent to a shelter. Some animals just don't get along with their owners or children. Some become aggressive due to lack of good training. And some animals get left at the shelter for pure human spite.

As we were driving in to the shelter, a very angry woman leapt out of the car next to ours. She held a leash and out jumped a beautiful collie mix. Before we even had time to get out of the car, she had already been inside the shelter and had stormed back to her car and sped off. My internal question of "What in the hell just happened here?" was answered some time after my visiting the shelter.

A man hurried in as I was waiting in a line asking about whether a dog had been brought in. When the dog was described, the shelter employees burst out with, "You mean the dog that was thrown in the door by some woman?" At this the man sheepishly muttered, "Yes that woman is my wife." "So you want to reclaim the dog?" one of the animal attendants asked. "Yeah, if that is what you wanna call it," the man retorted. Soon enough the same dog that had been but a blur to me came out to be reunited with his rightful owner. I couldn't imagine the story behind such cruel action on the part of his wife. I was not even there for twenty minutes and already I was privy to a not so private drama unfolding before my eyes.

There were other stories also in the making while I waited in line. A woman sat on a bench, holding a small brown dog, as her husband or boyfriend was filling out paperwork to release the dog to the shelter. The woman mournfully held onto her dog, her eyes were red from crying. Another woman, who was waiting in line, reached out to touch her shoulder and asked her if she was okay. The woman holding the dog couldn't even get the words out. I looked at the dog and worried for its future. I felt helpless, standing in line, while someone else was having their heart ripped out.

A young woman came through the doors next. She had black short hair, the color of glossy patent leather shoes. Her t-shirt read, "Sex instructor, first lesson free." The frivolity of her attire was in direct opposition to the expression on her face. Like the woman sitting on the bench, she was also bringing in her dog to be taken by the shelter. The two dogs barked and tugged at their leashes. They had no idea of the meaning of being taken to such a place. Soon both dogs would be led away from their owners to live in the confines of a cage. Both women were softly crying and petting their dogs.

By the time I got to the front of the line, I felt like an emotional wreck.

"I would like to see the kitties please. I wish to adopt one today."

I went back to the cat room full of cages. All eyes were upon me as I went from cage to cage. Some cats were full of energy, pacing and hollering, trying desperately to be heard. And some cats were quiet and pensive. I talked to a male cat named Captain Black. He seemed a character. Then there were the kittens. The shelter had the kittens grouped in cages with their siblings. After much looking and talking to cats, I spied one little kitty who was swatting through the bars. I felt it was a sign that she wanted me. There were two cats in the cage and they looked like twins. Both were tuxedo cats, predominantly black but with white underbellies and paws. I read the large tag attached to the cage. Two names were there, Angelina and Gina. How would anyone tell them apart? The information seemed the same for both.

I tried to ask a volunteer for help but she quickly muttered, "I have to get a cat, I will be back later." And then she was gone. Another volunteer came in to tell me that I needed to wear a yellow medical gown and put on some rubber gloves if I wanted to handle any of the cats. As soon as his words were out of his mouth, he also disappeared into an adjoining room. A woman with gloves, a medical gown, and hat came in looking flustered as I tried to eek out, "How can I tell Angelina from Gina...." But she dismissed me with, "I am sorry, I am part of the vet team here, I cannot answer your question." Clearly all the workers there,both paid and unpaid, were working their butts off. Finally the first volunteer came back all smiles and opened the cage so that I could finally get to hold my kitten who I found was named Gina. The volunteer urged me to rename her anything I liked. I immediately thought of "Mew Mew the Kung Foo Kitty" as she kept trying to swat at me like a skilled martial artist.

As I held my little purring bundle of black and white fur and peering little eyes, I don't think I need to tell you that it was love at first sight. I was happy but also sad for all the other animals I could not bring home with me.

Perhaps my kitty would have been adopted by someone if I had not been there. But maybe not. I like to think that I saved a life. Mostly though, I was opening my heart to love again. This is what unites all of us creatures, whether we walk on two legs or four. We all have the capacity to love and be loved. And when my new kitty snuggles up under my chin to fall asleep, I know that this is undoubtedly so.

you guys are sweethearts!

you really are. thank you for all the comments and help these past few days and weeks.

well...i had two episodes of...the spastic limbs and head surges this morning. then i took my six prednisone pills during breakfast. and...i am feeling pretty good. well...good in that nothing MSy is happening. not feeling the great burst of energy yet. we shall see.

the baclofen scares me. i took half a pill last night and...i dunno...i guess it worked. but...those side effects seem pretty serious. i am not willing to risk it right now. i like the idea of stopping the inflammation with the prednisone. now that i know my symptoms are MS...i can deal with it a lot better. if i use that baclophen if at all, it will be minimally.

a new reader asked if i was into holistic treatments. yes...i am always interested in researching and investigating all the different types of treatments out there. i am a skeptic by nature so i do my homework about what i am putting into me no matter if it is a "natural" treatment or a prescription drug. there seems to be nothing out there which does not have some sort of side effect. so i weigh the risks and the benefits and try to make good decisions.

there are a lot of folks who feel comfortable taking a lot of drugs for everything. i am not one of those people. having MS is definitely making me think about things I have never had to before.

i think i will write about my kitten next. i need something fun to talk about!

space flight scheduled for tomorrow morning

so...60 mg of prednisone tomorrow...all at once for breakfast. will i be superwoman?

i am taking baclofen...a muscle relaxant...and just reading about it...kinda scary stuff about withdrawl symptoms...hallucinations and seizures? what is that all about? i am supposed to take it as needed so...i am confused here. and if i were a coke addict it would help me with my addiction.

the prednisone will hype me up and the baclofen will relax me...interesting combo.

care for a drug cocktail anyone?

i will be sure to report on this exciting new experience.

The mystery is solved...

whew...

okay just got back from seeing the nurse who actually is a physician's assistant? a PAC? she was...excellent. finally...someone to help me! halleluyah!

this is an exacerbation of my MS.

i do not have epilepsy. these are not seizures although they sure look like them.

she was really helpful and empathic.

she told me how she had a nurse friend come in and it totally looked like a seizure, sent her upstairs for an EEG, the EEG was clean, then sent her for an MRI....and turns out she had MS.

this sure is a funky disease. all sorts of things can go awry.

i just feel relief.

tremendous relief to know i am not dealing with a second disorder/issue

and...i got a prescription for prednisone and...a muscle relaxant.

the not knowing...can just drive ya nuts.

now i know...i am getting help for the symptoms...and i know this will eventually go away. i feel so much better emotionally.

of course they used this opportunity to talk MS meds again. i am not on any. so...i am listening. i have my next MRI in october. i feel...more ready to try something. i hear fingolimod may be ready for the public come january of next year. i would try an oral med. if not that...i...can't believe i am saying this but maybe...maybe i would try rebif.

we will see.

being forced to stare your disease right in the face...it ain't easy.

thanks for all your support and help. you all are very appreciated. thank you.

Mystery symptom continues...

well now i am stumped.

my episodes are continuing each day without fail.

i will try to explain exactly what happens:

* first i feel some sort of warning like sometimes i feel sick to my stomach or i feel painful zaps in my head or i see flashing lights in the periphery. i always feel disoriented before one comes.

* i feel some sort of surge in my head and this surge travels to my right side.

* my leg (primarily)and arm will shoot out, elongate as far as they can go, and then retract and shudder.

* this cycle of elongation and retraction will go on for 15-20 minutes.

* afterwards i feel some aftershocks (facial and head twitching) and i feel very tired. my muscles on the right side get such a work out that they ache and are stiff the next day.

* there really is no patten to them that i can discern. when they happen, i am not stressed. sometimes i have just eaten previously but not all the time. sometimes they happen indoors and sometimes outdoors. heat doesn't seem to be a factor.

more notes: i don't have any pain. i don't have headaches. i have the zaps in my head which are very painful but they only last a few seconds each.

this is the big thing here that happened yesterday.

yesterday i felt very good physically. i was outside at a park with my son. it was hot and humid. i had no MS symptoms and i didn't experience this symptom either. i thought...good things are getting better.

but then last night...in the middle of a deep sleep...i startled awake as the convulsions were happening. so now they are happening during sleep.

i don't know what this is but...i want to be very clear and factual with the doctor if i ever do get to see an actual doctor!

i feel disgusted and helpless. i see a nurse on monday at the neurologist's office. i do not have high hopes.

thanks for all the advice...

i am still having my "episodes" of spasms, convulsions, whatever someone wants to call them. the best term that i found for them are focal motor seizures but i was told i am not having seizures.

still waiting for the nurse at my neurologist's office to call back.

wish i could schedule when the episodes would happen during the day so i could get them over with. lol

one happy thing is...i am getting a kitten. i decided that i need one. she will be spayed and ready for next thursday. yay! she is a little tuxedo cat. i will have to tell the details of my adventures at the animal shelter.

i hope you all are having a good day. :>)

a medical mystery

okay so where is House when you need him?

i will write a more detailed post about this soon but for now here is the gist of things.

i had an EEG last week (thursday) in addition to the whole mammogram thang to see about some weird symptoms i had been having. as much as i loathe seeing doctors and having tests, i was quite reluctant to mention these symptoms. really...it was at a friend's urging that i did when i had my annual physical. i was at a friend's house and i was slowing down quite a bit, and staring. prior to my "spells" i feel rather disoriented and just strange. she has kids who have epilepsy so she got concerned about it. i feel i was always present the whole time and so i didn't really worry. but at her constant request (nagging), i mentioned this to my doctor as well as other little symptoms such as seeing a zig zaggy aura on the right side of my face a couple of times. and the fact that there are times i feel what i deem to be little electrical zaps in my head.

so i have this EEG and the whole point of it is to induce a seizure. i thought that i would just hurry up....get this over with and go home. i did not expect anything to happen. i thought at most, maybe i would blank out for a second. that...did not happen. instead, i was writhing and muscles were violently contracting on my right side. needless to say...i was frightened by what my body was doing. i was totally conscious but my right side was in spasms. i had never experienced that before.

the neurologist and my regular doctor were supposed to call with results. neither one did. i continued to experience these spasms each day after. they would come on with me seeing some sparkly flashes in my periphery, a feeling of some type of electrical surge in my head which makes my jaw tense and shudder, and then it goes to my right side only making my arm, my back, and my leg (especially) to tense outward as far as the limb can go and then retract and shudder. the episodes last for about 10-15 minutes and then i feel the aftershocks in my head, face, and jaw where i twitch and jerk.

i had to hunt down my regular doctor and was told through the nurse a three second response of "the results were normal. no seizures. you are fine." of course i was like..."but...i am not fine. i am still experiencing symptoms." i was rushed off the phone with a dismissal of "go talk to your neurologist."

well...that is easier said than done. i remember the day i had lost my balance and coordination and my ability to talk without slurring my speech and was told simply to "stay out of the heat." i have called the damn neurologist and nobody has called me yet.

i am grateful i do not have epilepsy (although my friend tells me that her daughter who does in fact have epilepsy never showed much on those EEGs) but what the heck is going on then? why did i have such a reaction during the test? why am i continuing to have these episodes? what are they? what causes them and how do i stop them or prevent them from happening?

any insights anyone?

where is our resident civilian doctor linda? i would really love to hear anyone's take on this.

The Waiting Room

If you live enough life, you undoubtedly will have spent a good portion of your time in waiting rooms. Sometimes you are waiting for the miraculous to occur such as the moment when a baby is ushered into the world. Sometimes it is merely for the purpose of the mundane...a teeth cleaning or to get a prescription renewed. And sometimes you are waiting for the news which could threaten your life as you know it.

I was called back to get further imaging of my breasts based upon the first report. They had seen "something" on the mammogram. They wanted a more magnified view.

This news was totally unexpected. I had endured my first ever mammogram that week and thought that would be the end of it. I had done my duty and was ready to come back in a year, not in a few days.

So there I was in a waiting room filled with other women waiting to go back for their scans. Information about breasts was everywhere. On the bookshelf next to me were brochures with smiling women and instructions. There were instructions of how to do breast exams. There were pamphlets about the stages of breast cancer. There were ads for head scarves. And there were photocopies of information about terms I had never heard before like "microcalcification." I am glad I read the information as this term would prove to be important.

After exhausting all the breast reading material, I sat there and zoned out. I began to think about my friend who had just undergone months of chemo for breast cancer. One of her photos came to mind, the first one after she shaved her head bald. She joked that she was a human cue ball. My thoughts were interrupted by the call of my name. They always ask how you are doing. What if I told the truth? "I am a big baby and I'm scared to death." I opted for polite protocol instead and muttered, "fine."

I was led back to an area with multiple dressing rooms and lockers. This very teeny tiny elderly lady showed me a dressing room and she told me the rehearsed speech. "Everything off from the waist up. Put the gown on with the opening in the front. The lockers are over here." At that she was gone. I quickly put my green hospital robe on and chose a locker...lucky number four. As I put my clothes in the locker I began to pray, "Please God, please god, please god...make everything be okay." Then I looked around to find so many ladies were back there waiting. I felt bad for my selfish prayer and included everyone in that waiting room as well.

I found a chair which was opposite a huge poster of a breast with a band-aid on it. It was an ad for a new type of biopsy where there is little to no scarring. There simply was no room to hide from breasts. They were simply everywhere. I glanced at the other ladies in this waiting area. We were all perched upon our chairs like pigeons roosting, beaks down, staring at the ground. It seemed so surreal like a mammogram assembly line. They would call someone back and you could hear the squeaks and whines of the mammogram machine. I fully understood that some of us today would hear good news and some would hear bad news. At that moment in time, all possibilities existed at once.

Another woman several seats away was approached by a nurse. I overheard the words, "a biopsy will be needed." How many of us in this waiting room would eventually hear the words nobody ever wants to hear, that they have cancer? We were living statistics in a world full of odds. In this small waiting room where women come and go all day, someone would become the next statistic.

My name was finally called. I followed a pert little lady who told me she would be doing my repeat mammogram today. I felt an air of confidence from her and I liked it. She was business like and professional which I appreciate when I am feeling emotionally insecure. While in the testing room, I was given the reason for my having to come back. I had this microcalcification I had just been reading about, in both breasts. It was explained to me that I had tiny flecks, much like grains of salt, in my breasts. Sometimes this means nothing at all bad and sometimes it is the beginning of cancer. It would depend on their shape and size and how they congregated. They would need to take more pictures and possibly even have to do a biopsy to see what was going on.

I braced myself emotionally and physically. The first mammogram had been downright painful. I asked her shyly, "Four seconds a photo right?" This is what the first technician had said to me to calm me. This technician seemed puzzled, "Four seconds? Do they last that long? I don't know." My previous calculations of 24 seconds of pain for six more scans went right out the window. I very hesitantly approached the machine. I lowered the gown off my right shoulder as she manipulated my breast to fit between the glass. It squeezed but not that much. I was delighted that this machine was better and I would not have to endure being flattened to pancakes like the last time.

After doing the right breast, she was ready for the left. The gown, half way off anyway, slid totally off and I whisked it onto a chair. "Okay" she laughed, I guess it just gets in the way anyway. Bare chested I stood there in between scans. She asked if I was cold. I think she was maybe uncomfortable with my upper nakedness but I didn't care. I felt defiant almost. I was going to face this boldly like some wild female warrior. She told me I was doing good and that she was getting some good pictures. When I asked if the scans showed good news or not she told me she wanted to keep her job so she was not allowed to say. Usually I could solicit some information from techs but this one was silent. I tried to read her demeanor but just got her professional vibe.

After the scans were finished I was presented with three possibilities which might happen next. I would wait in the waiting room to hear either that things were fine and that I could go home, or that they needed to do more scans, or that they would need to do a biopsy. I was further told that this information would be given to me within the hour.

More waiting.

There was only one chair left in the area. I sat next to an older woman who was now sitting where I had sat previously, across from the breast with the band-aid. My waiting companion was quick to strike up a conversation. "Are you waiting for results too?" she inquired. "Um...yes...I was told to wait here." I responded cautiously. I really didn't feel like talking but I didn't want to be rude. She asked why I was there and I muttered about the microcalcification and then quickly dismissed it with, "It might be a little something." She was quick to sharply retort, "No...it is either something or nothing. It is never just a little something." At that I turned my head away but she kept talking. "For me, I have already had a lump." I hesitantly asked, "So...you have cancer?" She told me that she had a lumpectomy and some chemo and was waiting to hear if the cancer was gone or not. "I'm an old lady...what can you expect? These things happen." She seemed sad but accepting. At that moment a tech came back to tell me my news.

"The radiologist says everything is fine. Just come back in six months for another scan."

The words seemed to come in slow motion. Everything was fine. I yelped with relief. My smile became stilted when I saw my waiting room friend still...waiting expectantly for her news. I immediately felt guilty for my pleasure and wish to escape. I apologized for my good luck, "I just got diagnosed with MS not even a year ago...I just couldn't deal with something else." She nodded silently. I raced to get dressed and told her I hoped she would hear good news too. I will never know if my hope for her came true.

In my mind she will always be waiting.

The twins...are just fine

Today was a great day!

I was told that my boobies are fine and I do not have to have a biopsy. Whewwwww!

I was getting a little nervous about the whole thing I am telling you.

and...

I do not have epilepsy.

I just have...MS! Never thought I would be happy to say that but I am!

Soon enough I will write the story about today in detail but for right now...I am mellow and content. I feel like I have a new lease on life or like the story, The Christmas Carol, I haven't missed it! I still have a chance!

The sad songs of ice-cream men...

Just went for a bike ride and the ice-cream truck came by playing the theme to Love Story. What the crap! I want to hear cheerful music from the ice-cream man. It just wasn't right. What song would play next? My funny valentine? All the lonely people? Or maybe even some NIN Hurt.

Perhaps it's a ploy to induce melancholy to the masses. The remedy? Ice-cream.

Or perhaps vodka. I thought I saw the ice-cream man with a brown paper bag...

It's all about the writing...

or is it?

"Writing is like prostitution. First you do it for love, and then for a few close friends, and then for money."
Moliere

I had a friend once, who told me that she was going to write the next great american novel. She fancied herself to be the next Hemingway. She had just pursued a graduate degree at Harvard for a field unrelated to writing. When she discovered that she actually hated her chosen field of study, she decided that she would be a writer instead. Yet the one thing lacking was, she actually didn't love writing either. It ended up being merely an excuse to stall the less than glamorous task of seeking employment. So she took a year off and wrote things she refused to share with the rest of the world. Hemingway remained safe from her threat of competition. She never did write any novel, much less THE great american novel.

Can one just decide to be the next Hemingway?

There are some who believe the answer is yes. All it takes is a good agent or advertising. You too can become famous if you merely market yourself well. Well I don't believe it. There is a huge fundamental difference between being a good writer and being a salesman. Maybe I am naive. Maybe I am clinging onto the romantic notion that a good writer has something of worth to say regardless of how good of a marketing strategy they employ. The writing itself is the essential piece, not the desire for fame or fortune.

I dare say that Hemingway did not set out to be Hemingway. Most writers and artists do not know their future. There are a great number of creators of art or literature who were not popular in their time. They wrote or painted for the passion of it. Van Gogh is a prominent example of this. Considered to be a flop in his time, he had no inkling of the immense popularity of his works after his death. Van Gogh didn't paint for fortune or fame. He painted because he had raw passion and a fierce desire to do so.

Again, I am most likely holding dear to a romantic ideal of writing which is not the norm nowadays and especially with our technological advances which enables all of us to claim to be "writers" and "artists."

I am currently reading a book entitled, "The Cult of the Amateur: How today's internet is killing our future" by Andrew Keen. It is an excellent commentary about how far we are going as a society to demolish any standards of excellence in the arts. Writing is but one example. In today's world, anyone can be an "expert" at virtually anything. Joe Schmo down the street who who holds no degrees, reads no books, and lives in his mother's basement, can suddenly be an expert of anything from raising orchids to writing about global warming. Wikipedia is one site which makes us all experts of anything we choose. Despite the lack of credibility, thousands of people still flock to the site for a daily dose of misinformation.

Take a look at television for yet another example of how the public is constantly bombarded with the facade of the expert. The ads for the cholesterol lowering drug, Lipitor, come immediately to mind with the ad campaign featuring a Dr. Jarvik to promote the product. The truth of the matter finally came out that although he has a medical degree, Dr. Jarvik is not a cardiologist and is not licensed to practice medicine. The ad was subsequently taken off the air when this little fact was discovered.

I fear for the art of writing as well. There are millions of blogs out there and the number is steadily growing. It seems everybody and their grandmother writes a blog. As Andrew Keen points out: "If we keep up this pace, there will be over five hundred million blogs by 2010, collectively corrupting and confusing popular opinion about everything from politics, to commerce, to arts and culture. Blogs have become so dizzyingly infinite that they've undermined our sense of what is true and what is false, what is real and what is imaginary." It seems hypocritical of me to quote this as I am writing this for my blog. Yet you just try to be a writer without a blog nowadays. Blogs have become a permanent part of the writing world for good or for bad. I personally love blogging. It is a way to reach people who you would have never had an opportunity to form a connection with before. Yet as much as I do love this platform for writing, I am all the more keenly aware of the dangers and pitfalls as well.

One only has to peruse the blogosphere for some minutes to find that most of it is dreadful schlock. The term of "writer" has been so blasphemed that it holds no meaning anymore. Andrew Keen foretells of T.H. Huxley's "Infinite Monkey Theorem" to be coming true: "Huxley's theory says that if you provide infinite monkeys with infinite typewriters, some monkey somewhere will eventually create a masterpiece-a play by Shakespeare, a Platonic dialogue, or an economic treatise by Adam Smith." And today's technology has provided the monkey's with web 2.0 capabilities. Imagine the lasting effects of such a universe of low to zero standards for truth or quality. We are already there.

We have become a nation of a People magazine mentality.

Where are the good writers or journalists? How can one even find them amongst all the varied and assorted rubbish which litters the internet? What has happened to passion and a love for the art of writing? Are we to all be drowned out by the biggest mouths, the most successful schmoozers, and successful marketers of carefully crafted narcissism? Does anyone care anymore about any sort of quality control? Do we truly enjoy being herded like cattle to the next blog, the next website, touted as being "popular" by the number of hits or mindless comments to some self serving glutton?

I was reminded of how bad things are becoming when I saw a blogger recently who was actually bribing people for comments with the offer of a prize of a gift card. Is this what "writing" has evolved into? Forget about hard work or passion. It isn't about the writing at all don't you know? It is about all the hundreds of "friends" you can acquire on myspace or the number of times people link to you. Who needs good writing? Talent and hard work is secondary to obtaining a large enough mirror for people to repeat how wonderful you are. It isn't how well you write that matters it is who you know and how well you can play the game.

I am greatly disheartened by this state of affairs. In order to keep doing what I love to do I must put horse blinders on and shut out most of the world. In my quiet place I will write with reverence and a simple heart. Writing has and always will be my first love. No matter if the monkeys soon control the world, I will hold onto my pen and paper for dear life. I will write. It is who I am and what I do regardless and despite the lack of money or fame or anything else.

I am a writer.

And so I write...

Always keep 'em coming back for more...

well...

how do i begin to describe this week? i think i am shell shocked. but nonetheless i think i will not retreat and hide. i am going to do something different. something novel. i am going to stay connected, reach out, and talk about things.

but...i think i will just eek out bits and pieces at first.

okay well um...seems i may be having seizures along with the MS. moving right along here...

and...it seems they just couldn't get enough of the twins at the breast care center. they got a letter inviting them for more mammogram pictures on monday. the word "calcification" came up. i have heard this is common to have to come back so i will just take this in stride.

this ain't no party...this ain't no disco...this ain't no fooling around.

always something more. wouldn't it be nice if the something more was something good?

A day out for the twins...

I took the twins for a medical appointment today.

Okay it's not what you think. I am not talking about children. I am talking about my boobs. I had my first ever mammogram today.

I had heard stories of what it might be like. Needless to say I wasn't thrilled about this venture. And I now know what I do when frightened. I giggle. I giggle a lot.

I was pretty much laughing through the whole experience except for those god awful seconds when my breasts were squished to unimaginable flattened spheres.

The woman doing the procedure was absolutely wonderful. When people are about to cause you pain, it is a blessing to like your tormentor. I picked up on her New York accent right away. She was confident and smiling and assured me that I would get through this with flying colors.

When I saw the machine I did want to run but instead I walked tentatively towards it, giggled, and opened my hospital gown in order to plunk my boob upon the glass plate. My gracious tech lady told me that it was only four pictures...two for each breast. Four seconds each. She consoled me, "Anybody can tolerate four seconds of just about anything. You have had two children so this will be a piece of cake." She maneuvered my right boob into place and had me hold the other breast to get it out of the way. She told me to relax as my body went rigid. Loosening up one shoulder at a time, I allowed her to press the plate down upon the top of my breast. I felt pressure and thought to myself, "Oh this ain't so bad." But the plate kept moving downward more and more until the point of no return. I can't imagine my expression during that moment, one hand holding the next victim, as the life was squeezed out of me. I held my breath and then the first was over.

The lovely tech lady then proceeded to tell me some quote about flying. Something about that the thrill of flying is nothing compared to the thrill of landing. She told me that quote reminded her of the plate coming back up and didn't that feel good? I must say...I agreed.

In between pictures I was shaking some and she asked if I was going to faint. I reassured her that I was fine and we could proceed. I was not going to be a big baby if I could help it. I was able to tolerate the left breast much better as I knew what to expect. Then it was time for two more pictures with my breasts being squooshed sideways. Somehow these did not seem as painful.

I asked how often I had to have this done and she told me once a year from now on until I can't walk in there anymore. I thought about my MS and how I could get out of this based upon her rules! She then told me the story of how her last patient was 87 years old and had asked the same question. I bucked up and agreed to come back again next year. It is a critical procedure for us women. It is just a fact of life now.

At last it was all done and I thanked her and quickly escaped to get my clothes back on. I cupped my breasts marked with red lines and consoled them that they would not have to undergo that again for a whole year.

Perhaps I will treat the twins to a nice new bra for their troubles.

Me today...