Welcome to December (almost)

Monday is a neurologist appointment followed up shortly after with Tysabri infusion number three. I'm already planning on what I will bring with me to pass the time at the infusion center. When you're attached to a stupid IV pole you'd be surprised how awkward it is to do the most mundane of tasks. Not to mention some of the chairs they have which are hard to get out of if you're only 5 feet tall and built like a refrigerator. I'd like to try and walk for a while but I suspect I'd just be getting in the nurses' way as I made a loop around the two nurses' centers. Plus, I'd be able to look into everyone's little suite so that probably wouldn't fly with the privacy issue.

Last time during my infusion I marked some papers, read a little and watched the good cable with the remote firmly attached to my hand. I don't have good cable at home, only channels 2-14 and 75-77 for about eight dollars a month. I have an inkling that I'll watch some TV again as it does help pass the time in those weird chairs. I'm so short that I don't fit well in most chairs; often I can't touch the floor with my feet when I sit in chairs and I end up being perched on the end of chairs so I can try and reach the floor. That also happens at the neuro's office. I end up perched on the edge trying to sit comfortably.

The pain in my hands and arms and fingers has significantly improved although I'm not sure how much of that is from being off from work and how much is Tysabri. I still have fatigue issues that are off the chart even with a bit of Provigil. I'm even having some dreams about going back to work again, not being able to control the kids, the kind that wake me up and make me feel cranky because that's never been a real life issue for me. I just don't want to be worrying about school now when I'm supposed to be taking care of me.

I did the 20 minute Turbo Jam program today and I did a little better than the other day. I'm going to try and continue with it for 3-4 times a week, like every other day. I need to lose weight so I can actually wear my clothes. I cannot blame Thanksgiving for me being so wide; that's been a problem of mine for years now and I can't blame it on any turkey.

Maybe once I have my Nintendo Wii and my Wii Fit that I'll be able to get more parts of me worked out at my low and slooooooow level. I'll let you know how that goes.

Holiday Mail for Heroes, an easy way to help others

Today's post will not be about me. I know, can you believe this narcissistic blogger can manage to turn her focus elsewhere? It does happen now and then.

I'll be copying and pasting some information here on an inexpensive and easy way to help others during this holiday season, something I'm going to be working on myself this afternoon. As most of you know, I have siblings in the military and most of you know that you can no longer send packages to any soldier like you used to be able to prior to 9/11. However, the Red Cross does offer a program that you and your family (a great project for kiddos to be involved in)can participate in where you can mail holiday cards to military personnel serving overseas, veterans, and military personnel here in the US. It's totally legit, Snopes it if you'd like.

Here's the web addy: http://www.redcross.org/email/saf/

Below will be more information about the Holiday Mail for Heroes program but please remember that cards MUST arrive by December 10th and cards do NOT need to be individually enclosed in envelopes so if you have messed up on some envelopes and have some extra holiday cards, or you can hit up the dollar store for some cards, or make some at home with the kiddos to donate to this project.

Here's the promised information about the Holiday Mail for Heroes program:

Holiday Mail for Heroes

Holiday Mail for Heroes is a partnership between the American Red Cross and Pitney Bowes to deliver one million holiday cards to American service members, veterans and their families in the United States and around the world. Please send cards to this address, following the guidelines listed below:

Holiday Mail for Heroes
PO Box 5456
Capitol Heights, MD 20791-5456


Please follow these simple guidelines when sending your card to ensure it will quickly reach service members, veterans and their families.

•All cards must be postmarked no later than Wednesday, December 10, 2008. Cards sent after this date will be returned to sender.

•If sending more than one card, please mail all cards together in ONE large shipping envelope. Cards sent in this manner do NOT need individual envelopes or postage.

•Please ensure that all cards are signed.

•Please use generic salutations such as “Dear Service Member.”

•Please do NOT include personal information, like email or home addresses.

•Please do NOT send letters.

•Please do NOT include inserts of any kind, including photos, GLITTER, confetti, gift cards or calling cards. Any items inserted into cards will be removed during the reviewing process.

•All cards received may be used in program publicity efforts, including appearing in broadcast, print or online mediums.

I'd love to know if anyone plans to participate out there. I have some photo cards of the cat I'm going to use up because everyone saw them last year. Thanks for helping and happy holiday season to you all.

Post Thanksgiving thankfulness

This will be a short one but Thanksgiving was nice. My brother actually called ME but I missed the call and then he called when I was at my parents' house. They have three phones so we were all on the phones at the same time.

The meal was also tasty as all get out. I took home some leftovers which is always great because you just microwave them and then recycle the containers.

I also forced myself to do the Learn and Burn part of my Turbo Jam DVD today. It was only 16 minutes and some change and then I spent another 5 minutes of sloooooooow walking. I could barely get through it and I used to be able to whip it out fairly easily. At least I tried it and did the best I could.

Hope your day was special. If you're shopping today I hope you find the bargains you're searching for and the patience you'll need to stand in those long lines. I wouldn't go out there early if you paid me.

Happy Thanksgiving

I love Charlie Brown and his holiday special so this was the perfect graphic for today's post. I wish you safe travels if you're going somewhere and I wish you great patience if many someones are coming to your house for the bird or tofurkey.

Today I had a wonderful reason to be grateful. Some of you know that both my only brother and only sister are stationed in Iraq as proud members of the US Army. Hooah! This is my sister's second Thanksgiving there and the shine of Iraq is wearing a little thin. Obviously, I haven't seen her except in a few pictures and not heard her voice in over a year.

Today I got to "hear" her a little bit as we were both on Facebook at the same time and we chatted through their Facebook chat option. Just seeing her words made me start to cry and I mean cry, with slobber, snot and the whole ugly look going on. We had a conversation for about a half hour about different things but it was like a piece of her was with me. I am so thankful for that conversation.

Not to mention that track three of Josh Groban's 2007 Noel album was playing then which just about metaphorically kills me every time I hear it. If you don't own his holiday album and you enjoy Christmas music I urge you to walk or drive (according to the speed limit) and purchase a copy. It's fabulous and his voice has really put me in the holiday mood, especially with the tree being up. I derive no royalties from this free plug for Josh but if you have this CD and you like it or you get it and like it, please let me know!

Secondly, I got to see pictures yesterday of both my brother and sister in Baghdad because she was able to visit him last weekend (some sort of regulation when you have siblings in a war zone, they get one weekend together). They took some nice pics together and I saw the pics on Facebook before my parents even saw the pictures. My parents are getting a CD of the pics in the mail and I'll show them the Facebook pics tomorrow on Thanksgiving. Yes, it will be the three of us which is always awkward because everyone is sad that my siblings aren't there. Plus, my siblings relieve some of the tension that exists between just the parents and me.

Today, right this moment, I am listening to this lovely music and I feel peaceful and loving and joyous. In this moment I have faith and hope and I wish that for you, my dear readers, as this special holiday approaches.

Happy Thanksgiving.

A box of sunshine

I feel a lot like someone on Oprah's Favorite Things show where you get one of everything she loves and is spotlighting that particular year. If you've never seen Oprah, then it's not worth the words it would take to explain it.

Regardless of Oprah, yesterday I was the recipient of a Sunshine Box from people I work with at school. A Sunshine Box is aptly named because it is meant to provide a bit of sunshine for the recipient who is going through some trying times, usually due to illness.

If you're an avid or semi-avid reader, you may recall that I am now on a sick leave trying to get it together between my depression and my pesky MS symptoms of fatigue and cognitive issues. I have been on this sick bank leave officially for a week and some change and have time off through the end of January. At that time the leave may be extended or I may be back at work come the first working day in February 2009.

Now back to the box...

It was filled with so much stuff, good stuff, great stuff that I was overwhelmed. I cannot begin to tell you how many people I worked with put something in there and wrote me lovely little messages. It makes me think of Sally Field (not for the dang Boniva once monthly pill but for the "You like me, you really like me" bit) because I didn't know people liked me that much!

There was chocolate, money, puzzles, books, a cool 20 questions electronic gizmo that I've "wanted" for a while , bath stuff, a candle, a CD, lotion, magazines, more chocolate, snacks, and a gift card for gas and one for a nice Italian restaurant. There's more stuff too but this is what I can remember right now.

This is a nice bit of sunshine for me. It's interesting that this post follow yesterday's post about sadness and depression and following the cycle of the wave. Right now, I'm riding on top of the wave and it feels good. It's nice to feel special, so if any of you out there reading had anything to do with this box, please know how much I deeply appreciate it.

Thank you. Two words that mean so much but it's all I've got for now.

Early poetry is painful

I've written here before about my issues with weight and my family while growing up. Here's a poem from half a lifetime ago, literally (age 19 from my current age of 38). As I read it now I see the pain that I felt then.
______________________________________________________________________

Love Me

I starve myself
because Mommy and Daddy
don't love fat, ugly, stupid girls.

I play the game with my life
but no one can win.

Twice
they've put me in the hospital
and filled me up with medications
to make me feel less anxious.

Nothing works.
Not their pills,
not my mind.

I only want
to please my Mommy and Daddy
even if it means
that I lose myself,
fade away,
and become nothing.

I don't care if I die
if only
someone would love me.
____________________________________________________________________

I used to be really good at self destruction. Self harm was what I was all about starting in about fifth grade. I had one of those families where everything had to look good, but I never looked good. I was fat and had glasses and I could never keep my hair looking nice. I was shy and hoped that if I was quiet then no one would notice all my imperfections. Fat chance.

I was scared of trying anything new because I felt so inferior all the time. I wouldn't try out for chorus and I was never a Girl Scout. I just read and played by myself because we lived mostly in the country. I would get lost in books because books didn't require that you look or act a certain way. Words that I read never hurt me in the same way that spoken words did.

I recall sitting in the back seat of the family car in sixth grade sobbing to myself as my parents drove around. I couldn't explain why I was so unhappy except that I knew I was a square peg in my family's group of round holes. I could cry without making noise and the tears would just flow into my jacket or shirt sleeve.

I know all this cr@p makes you stronger but I still haven't learned the lesson from it all. What was I supposed to learn?

Being fat doesn't make me happy, sticking my fingers down my throat doesn't make me happy, killing myself to be thin through starvation and pills doesn't make me happy. I've chosen all the wrong men to be in my life so that isn't the lesson. MS is a pain in the rear which just makes living harder. Depression has been my longest companion along with not being thin.

Maybe the lesson is that life is about riding the waves. Sometimes you're on top waiting for the wave to break and sometimes you've just run into the shore. Life is cyclical. Feel good, then bad, then pain, then a glimmer of hope, and sometimes sunshine and repeat?

Caution, alert ahead

I didn't think about this potential problem until after I posted yesterday's entry. Now focus people, there IS a possibility that you oven door may NOT come off your oven. I do not want to start a huge trend of people out there acting like giant behemoths yanking off their oven doors and breaking them and then cursing me out. Not that I can hear your cursing but still, I don't want to go to sleep at night with this kind of stuff weighing on my shoulders.

Be very careful when trying to remove your oven door.

I was aghast myself when my friend ripped that sucker off. I can only imagine the expression on my face. Here's my quiet little oven loving friend detaching the door to the oven that just had had its heating element replaced that very morning after two weeks out of commission. I thought the d@mn thing was now truly broken and my super who's not so super would think I am a complete and utter idiot.

So please, I beg of you, if you're going to try to clean your oven, be very very careful if you try to take the door off. Not all oven doors may come off. Attempt to remove doors at your own risk.

Thank you! This has been a reminder from the emergency oven door removal council.

I'm a big girl now (thanks to BJM)

I wasn't going to write this particular post today because I am wiped out from the fact that my "super" lost my money order for my November rent. That presented itself as a new stressor in my life and sent me out in to the world to deal with it, which I did. How HE lost it, I have no idea but he is the "super" who's not so super. He likes to partake of the cheap beer on a daily special occasion called evening.

Sigh...

The exciting thing is that I have now entered the world of womanhood. It's not about getting your period, it's about learning how to clean your oven! I now know how to do it.

Who know the oven door came off like that? I swear I never saw my mom take the door off the oven in my whole life.

On Christmas Tree Thursday which brought forth a lovely 7 and a half foot tall Dakota Fir with 350 white lights, two sets of colored lights and an angel on top, my friend BJM also covered up my brand spanking new oven heating element and sprayed that bad boy oven down.

That's how I now know that the oven door can come off! I basically sat back and occasionally handed something to her or held something while she worked on the oven and then the tree. It was great. She did so much work that it would have taken me a week to get the same thing done.

So here's to BJM, oven cleaner and tree putter-together extraordinaire, Huzzah and happy holidays!

My first writing assignment in college

What follows is my first ever writing assignment turned in to Professor William Smart at Sweet Briar College. I unearthed it Wednesday evening as I was cleaning and organizing for Christmas Tree Thursday.
____________________________________________________________________

How many times have I started this? Each time I get a couple of sentences down and then I erase them. I like how computers can do that, just erase it all as if it had never been there, never been written.

There are plenty of periods in my life that I wish I could cut out and throw away as if they had never happened, but that doesn't work unless you're hooked up to a keyboard. It's funny that I should even be sitting in this room, with all of you, listening to this. You're thinking to yourself, "Who wrote this? Is this chick on Valium or what?"

Nope, no need for sedatives now. I've got a lot more control than I used to have. There's no need to try and hide anything now. No one can take away anything from me, no one can tell me how to feel or how to think. You see, I'm not even supposed to be alive. The doctors never thought, my parents never thought, I never even thought, never believed that I would be alive.

If you had told me five years ago that I would be here today, sitting amongst all of you, trying to write something, I would have laughed in your face. I know a lot about pain but I also know what it's like to survive even though it hurts, even when you don't care anymore, even when you don't want to survive. I may not look like much but give me some time. Think of me as the carbon that comes before the brilliance of the diamond.

Did you see the move The Dead Poet's Society? Remember what Robin Williams said? Carpe diem - Seize the day. Valuable piece of information there. It's partially the reason why I'm in this class. I've wanted to be a writer for some time now, about seven or eight years, and I decided to give it a try.

So here I am despite some strong opposition from some parental figures, despite my own self doubts. if I don't try now I know that I'll look back on my own self sabotage and say, "Where the hell was my brain? Why didn't I at least give it a shot?" I could never forgive my cowardice if I didn't at least attempt to put out some good pieces for this class. If I fail, I fail, but at least I will have tried and that is what is important. For a long time I thought that everything had to be perfect but I have learned to see that there is some beauty in everything and you just have to take the time to look around and find it.

I think that I'd like to be a writer but there are so many people that say that, that they want to write. For me, though, it is so much more than that; it's like I need to write. Writing is more than just a way to make a living, it is seeing and believing in others, in ideas, and most importantly, in yourself.

Writing is my joy and my pain, my cathartic process of healing and mending. I learn from writing and I write about what I have learned. Writing lets me think and wander and dream. It allows me to reach new heights and cross into places I've never been to. With it I can create whatever I want.

Writing allows me to become free from all of the boundaries and biases of everyday life. And it doesn't matter what anyone else says or thinks because it is my poem or my essay and if it makes me happy then there should be nothing more to strive for. Yet, I continue to want more. I want people to read what I've written and feel something. I want a response. The best feeling is letting someone read one of my pieces and have that person say to me, "Yeah, this is good, I liked it because ..."

Writing is freedom and control, love and hate, dreams and reality all at the same time. Writing is what I love and what makes me happy and that is why I do it. I love the way I get an idea and the way the words flow out swiftly while I scratch my pencil across a piece of paper. That is writing. It's taking a chance, exposing a piece of yourself for everyone to take a stab at. It's not wanting to end something until it is done 100% and to the best of your abilities. Writing is sharing and expanding and feeling and caring. I want to write more than anything in the world. Few people can understand that but I know what I want and writing is just that. Writing, if it could be personified, would be my best friend. It listens and grows with me and never betrays me. Once you have understood that, then you can begin to comprehend what my life is like.

I am only 19 - no longer a child but not really a woman. I am on the brink of the world, the precipice of a vulnerable reality. They say that all you need is a dream and I have one. Even though no one else may support me, I have to at least try and see if I can do it. I have to have the strength and conviction in myself because there is no one I can siphon that from. I have to believe in myself and be willing to fight for what I want. This is my life we're talking about, not a play about Willy Loman or Juliet Capulet. The curtain comes done only once for me.

You wanted to see inside my head so here it is. A very intricate piece of machinery, the brain. The TV commercials say that it's a terrible thing to waste.You know what? I believe them.
____________________________________________________________________


I sat in that first creative writing workshop after hearing this piece read aloud by my professor, my soul exposed to a group of strangers. I recall the looks of the women around me listening and letting this all soak in. They commented when the professor was done and he asked if the author wanted to reveal herself.

I didn't then but I am now.

One more tiny piece to finish this memory; the only thing written at the end in form of a comment were these words, "This is the beginning."

Nineteen years later, it's part of another beginning.

Random shiny moments

1.) I love plays on words like the sticker above. The flair buttons and bumper stickers are one of my favorite parts of Facebook. Remember, if you're a Facebooker and want to be pals send me a note and maybe you can be part of my Facebook entourage.

2.) A note on my tiredness and fatigue. My mom thinks that if I sleep a lot I will feel much better. Now that is true up to a point. Provigil and my ADs help me to feel better, along with the sleep. I go to bed around 9:30ish now (late for me!) and sleep until sometime between 8 and 8:30. Then I take another nap for an hour or two after I've been up for a while.

So you can see that I sleep a lot. My mom thinks that all of that sleep will make me feel rested and I should be good to go the next day. If you have MS or know an MSer with fatigue issues then you know that's not the case. I live each day as if it was from the movie Groundhog Day with Bill Murray. I wake up and my body thinks it needs all the sleep it can get, no matter how much it got yesterday. I'm always tired.

3.) I've started watching Arrested Development on Netflix today in between my bouts of semi-coma like sleeping. I like it. It's sharp and witty and sarcasm at its comedic best. Sometimes not having good cable can be a blessing.

4.) Tomorrow is trying to put up the fake tree day. I hope we can survive it.

That's all I've got for shiny crow rambling moments. Believe it or not, I'm tired again.