Sunday, November 30, 2008
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.
Saturday, November 29, 2008
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.
Friday, November 28, 2008
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.
Wednesday, November 26, 2008
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.
Tuesday, November 25, 2008
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.
Sunday, November 23, 2008
because Mommy and Daddy
don't love fat, ugly, stupid girls.
I play the game with my life
but no one can win.
they've put me in the hospital
and filled me up with medications
to make me feel less anxious.
Not their pills,
not my mind.
I only want
to please my Mommy and Daddy
even if it means
that I lose myself,
and become nothing.
I don't care if I die
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?
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.
Friday, November 21, 2008
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.
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!
Wednesday, November 19, 2008
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.
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.
Tuesday, November 18, 2008
That's a drop of water above and it seems to be all the rage in the news as of late, water I mean, not so much the one drop. I watch the Today Show on NBC and they are spotlighting the theme of water as they travel to different parts of the Earth this week.
I don't know about you but I believe in this global warming stuff. Places where there have been snow and glaciers for hundreds of years are disappearing and dwindling. They're losing snow from the top of Mt. Kilimanjaro for crying out loud. Tall mountains are supposed to have snow due to the elevation and temperature and precipitation. That's something that I teach when it comes along in the curriculum.
In CA, a shout out to JM and WW, where they have been in a drought for three years. Three years! Can you imagine that? I suspect you can, if you live in an area like that. My friend JM just wrote me today that she missed the snow here (but only for a little while because where I live we get a lot of snow, an average of at least 120 inches a year). JM says there's no grass or plants where they are in CA, just brown stuff that can burst into flames if you look at it hard enough (her words, not mine). She lives near one of the wild fires and she says the air quality is horrid and they can hardly be outside due to the smoke. Now that stinks!
Ann Curry (who turns 52 tomorrow, flipping 52 and she's gorgeous!) was speaking about water usage in Africa vs. water usage by a typical American family or it may just be an individual, I forget. In Africa: 5 gallons a day. In the USA: 120 gallons a day.
I've seen these numbers before because worldbank.org has a neat website with materials for use in the classroom. That information was in a section on water that I used last school year when we were raising money for the John Dau Sudan Foundation. An eye opener - a difference of 115 gallons a day. A day, people. Imagine the usage after a year. Never mind, I'll do the math for you.
Africa in one year: 1,825 gallons.
The US in one year: 43,800 gallons.
Water is an issue for millions of people whether it's not enough, too much (New Orleans anyone?), not potable (drinkable and clean and healthy), it's disappearing, whatever...
This is just one of those posts about my ramblings, ergo the name Messy Stuff: A Life with MS and Other Ramblings. Any thoughts or comments?
Monday, November 17, 2008
I am supposed to be putting up the tree on Thursday, er my friend BJM is probably going to be doing most of it as she is a fake tree expert extraordinaire. That will come in handy because I'm like a no thumb kinda gal so me doing it might make for a funniest home video for someone else.
I took an actual shower and changed my clothes and did my hair today. That was a giant success over the last two days. My right arm is all about painful movement and my low back and legs are trying to drag me around when it's time to move. I'm not sure if it's from the Tysabri, the MS, or the fact that I "worked out" for 6 out of 7 days this past week.
My working out is a snortaminute workout for most regular people on this Earth, including the geriatric crew. I do about a one mile walk and once in a blue moon a 2 mile walk with one of those Walk Away the Pounds DVD in the comfort of my living room. The people on the DVD use weighted balls and I just try to throw my arms around in the same half movement. I am sure that 2 year-olds get more exercise than I do. But right now this is my marathon.
I usually follow it up with a relaxing yoga pose where my feet are up on the sofa and my body is on the floor. This is supposed to get the lymph in your body to move around more efficiently. I have no idea if it works but it can feel nice.
I have decided that I need my SAD light from work. It's one of those bright lights that help with wintery/autumnal depression. I know I need it so it's just a matter of someone finding it there and I think I know where it is. Then it needs to find its way back to my home, slovenly home.
Actually, I do not live in a total sty but I have lots of papers run off for work that need to go somewhere other than my kitchen table (also a gift from BJM) where they have been living for a month or so. Then I also have my single copies of papers from September. I must put all this stuff somewhere neatly so on the off chance I invite the UPS man in and he accepts, he will be pleasantly surprised to see that I have cleaned the place up.
I'm having some shiny crow moments so this is it for now. Hope all is well with you, especially if you're out in CA by the wildfires.
Saturday, November 15, 2008
No showering today as I just don't feel like I can do it. Not going anywhere or seeing anyone. I'm just wondering where this sense of self punishment comes from. I see the daylight for a while and then it's all jerked away and I'm back in a place like what you see above.
Small, deep, dark, suffocating, stifling depressive hole that engulfs me when I start to turn the corner. Why?
Friday, November 14, 2008
I woke up this morning around regular work time, which is about 5:30ish after having dreamed of work. Not work in a nice way but a typical frightmare where the students are being unruly and things are out of control.
I've been unofficially out of the classroom since Wednesday. Wednesday, people! And here I am having a typical work dream. How the heck is that for being on a "break" as Ross from Friends would call it?
I'm afraid that by the time I get back I will be unable to control them, them = small children, not knee-biter small but small enough that they still like cartoons and birthday parties. How could this even be a possibility? It's not one really but that's what it was like in my dream.
I'm walking around the classroom and kids are working on an assignment upside down, others aren't doing it at all, and others did it but lost it. It was clearly a Social Studies assignment in my dream as I just talked to the Special Ed teacher/super helper yesterday about the Social Studies state test and it's fairness. So that's why S.S. was on my mind.
Where does this fear and worry come from I ask myself. I've never had a problem like that in my classroom but I worry and fret about it nonetheless. What if I do all this resting and extra sleeping and take my bazillion pills and supplements and I walk back into my classroom and I am still a giant doofus?
What on Earth will I do then?
People ask me what I've been doing on my leave and the biggest thing is that I get to sleep a lot more, sleeping later and taking a nap. The depression is getting better now that I am out from under the constant strain of paperwork and being "on" like a Broadway performer five days a week. I am taking my supplements and my pills and exercising slooooowly, pathetically slowly. How 20 minutes of moving can wear my body out like it does it amazing to even me.
I notice the lack of paying attention is still a problem for me. I drive and look around me instead of at the actual road. I'm rather interested in traffic and cars and people on the sidewalk, when I should be interested in what is in front of me and traffic lights! It's like a crow going after something shiny. I'm the crow and the whole world seems to be shiny.
My hands have good days and bad still. I think not writing plans and grading and making up worksheets has helped that issue. My back and legs have brought themselves into the fold and started acting up recently, most likely due to the excessive exercise of 20 minutes almost daily.
What if I do all this resting and that frightmare comes true? That's the scary thing for me.
Thursday, November 13, 2008
Today's topic is coming from the email I mentioned yesterday. One of the questions was about naming your favorite sound. I had more than one so I'll list them here and if you want to share your favorite sounds, I'd love to see what they are.
1.) A ringing phone with a good friend at the other end (and time to chat). This one's easier to figure out now that almost everyone has caller ID. There's nothing worse than napping or being on the floor doing some yoga and the phone rings and it's some stupid unknown caller aka a credit card company with some "amazing" offer or a survey, etc.
2.) My brother or sister's voices since they've been gone away so long. It's been over a year since I've seen or talked to my sister in Iraq and I miss her something fierce. She's 13 years younger than I am but we get along rather smashingly and we are sillier than an almost 40-something should be. She makes me feel young and alive again and I miss that along with missing her.
My brother has been gone since February so I haven't heard his voice either and I've received a whopping two emails from him while he's been in Iraq. My sister emails once in a blue moon but to hear their voices would be wonderful.
My sister is supposed to be going to see my brother this weekend in Iraq after a previously scheduled visit a few weeks back didn't work out as he was going out on a mission. That's nice because they haven't seen each other since my sister left and my brother was supposed to be getting married the next weekend after here at home but his future wife called it off and has since ceased all contact with him. (He is no longer coming home on his leave and will take it sometime in February when he may go to Australia to celebrate turning 30.)
3.) Christmas music that's not annoying, including the sound of carols at mass. Now if I was more of a church goer I'd experience the second part of that sentence more. Maybe this season I'll start going again. I was raised a Catholic and worked in a Catholic school for three years. That was an eye-opening time. I worked for a nun named Sister B who ran the school where her brother was the priest at the church, ergo her brother was Father B. That's almost worth a chuckle.
I worked with super people and no supplies but the two Bs were bickerers and argued over money constantly. At the time my wasband and I were separating I received a lot of nastygrams from Sister B who basically drove me out of Catholic school and into my current position in public school, making oodles more money so I guess that was a prayer answered in disguise. The point is that I was very disillusioned after giving three solid years to them and being treated less importantly than bacteria found in a thermal vent in the ocean.
However, I still love the time from Thanksgiving to Christmas and not just for the gifts. I'd rather give gifts than get them. I love the decorating. I love the peace of church and the silence as we build up to the birth of Jesus. I love the shows on TV from my youth. I love the music and the sounds of the holidays.
What sounds are pleasing to you?
Wednesday, November 12, 2008
I received one of those emails the other day where you're supposed to fill in the answers and pass it on to other e-friends and back to the person who sent it to you. I only filled it in and sent it back to the person who sent it to me because I was being lazy. However, I thought I had some neat answers to some questions so I'll put them here and offer you some insight to my angst-ridden, quasi-peppy, semi-depressed, multi-layered soul.
( X ) Watched someone die
Okay, I took some liberties with this one but I was there when my maternal grandmother had her stroke and was DNR for the better part of a week. She was living in a local nursing home, which ironically was the same place where my mother was working in a supervisory capacity. My uncle had flown in from Minneapolis where he is a doctor and we all rotated time spent with my grandmother who was breathing but not alert.
My grandmother was more of a mother figure for me because my own mother had me a few months after her senior year graduation in high school. I lived with my grandmother when I was very young, along with my mother. I spent weekends there after my mom married for a second time doing kiddo things like watching cartoons, staying up late, taking long walks, trying to sell rocks by the country roadside, making mud pies, and swinging on my swing set. My nana's house was a haven for me, my own utopia, my safe place for the most part.
The week when my grandmother had her stroke my paternal grandfather unexpectedly had a heart attack and died before my maternal grandmother did. It was the weirdest and most unusual February break I've ever had from school. Two funerals on two different sides of the family within the same week. And that was the end of the grandparents I knew.
I digressed though, and now back to my nana. There were times when our "visiting" overlapped amongst my mom, uncle, and me. Those felt uncomfortable as if too many people were trying to force themselves into such a tiny room. Too many different emotions and thoughts all going on at once.
I preferred going in at night to "visit" by myself when my mom and uncle were gone. I liked the quiet but I would also turn on the TV and watch the news or a game show and play along while I sat there. I painted my nana's fingernails, something she liked having done because she couldn't do it herself due to her Parkinson's disease. I talked talked to her about stuff and prayed with her and for her. My grandmother was a very religious woman and had clutched in her hands a rosary and some religious medals throughout those several days as we watched and waited.
There were times when she would seem to stop breathing for too long and I would look at her face and see if this was the last moment. It never was while I was visiting but those moments would come and I'd be plunged into shock and sadness. I would try to hold back the tears while I was there because there were always nurses and aides coming around to check on her. I didn't want others to share in my pain.
I'd speak to her in a soothing voice and tell her it was okay to go. She didn't go though, not for several days. She was a tough woman in life underneath her soft exterior. She spoiled me rotten as I was growing up and it was clear that I was the favorite grandchild. (Finally, I was the favorite with someone!) She had a difficult childhood with a mother that died very young and a father that left the family behind. My nana grew up in a house raised by her older siblings, dirt poor to the point where she didn't even have underwear for a certain point in her life.
She was married to a man that loved her and I have some of those love letters from him to her during WWII. That correspondence was one of the few things I was able to take away from my grandmother's apartment as it was being cleaned out and things sold during a time in my life when my mother was very angry with me and not speaking to me. My grandfather was a tall and thin man who worked hard and they grew up saving all their pennies and then some. But, my grandfather, my poppy, had a temper and would lose it and take it out on my nana. He'd swat her and call her stupid and I recall my nana cowering at times and crying. Maybe that's part of why my mother made the choices she did and I married an abusive man.
Regardless, she loved me thoroughly and with no boundaries. I watched the one person who I was certain loved me completely slowly leave me and it was awful and wonderful and frightening and moving and horrible.
I wouldn't trade it for anything though except maybe for one more day with her so she could see what I've done since she's been gone.
Tuesday, November 11, 2008
Today was my latest brain MRI and I got to wear an interesting cage type helmet such as the one above. If you've never had a closed MRI of the brain, then this is what you look like before they slide you in the machine. There's some MRI places where you can watch TV with special goggles or listen to music but at my MRI place you just get tie-dye type ear plugs and massive banging, booming, whizzing, thwacking, and other such mishmash of loud noises.
The thing is I find it all incredibly peaceful. Most people don't. Some people freak out because it's kind of a small space and shooting the tube (vernacular for getting an MRI) makes them feel claustrophobic. I used to worry about that during the first two MRIs but I've had probably about six or seven now and I like to think of them as restorative meditation, of sorts.
They slip me in, I close my eyes, and away I go into an almost trance-like, slow-breathing state. I rather enjoy it and hardly move. I am a model (a fat one) patient because moving is a no no in the MRI process as it can distort the scans. We don't want any distorted scans now, do we?
I have not started the Christmas tree building process yet but I think I am going to bring the box in the living room tomorrow. Today I went to Wal-Mart and the pharmacy and I slept in until about nine so I didn't get as much done as I had planned. I also walked for the third day in a row slowly because my back has been bothering me and I'm not sure if it's Tysabri-related or not. Guess I should write it down in my book of symptoms and such and start tracking it.
Thank you to all our veterans and our current military people serving here and abroad. Happy Veterans Day and bless you for your service.
That's all I've got.
Monday, November 10, 2008
I am unofficially officially on my leave but I still have comments to put in for report cards for three subjects. I have all the averages figured, all the grades in and one set of comments done. I was at work today from about 9 through 12:40ish showing the special ed teacher/super helper where things are, going over my outline for the next few months, and finishing grades for Wednesday. So I am almost officially finished and I will be done when comments are finished.
I see myself slowly coming out of the depression. I don't think constantly about offing myself which is a real help as I go through the day. I still have some food issues with "some" binging and purging. There are minor thoughts of self harm but I can push them away. I'm taking Provigil because although it can act as a stimulant in the sense that it tries to keep me awake whilst driving and living daily life, it also seems to keep me calmer.
I feel that when I do not take the Provigil I am so antsy and irritable that I may rip my skin off and crawl out of it. Not a pleasant feeling.
I sometimes smile and even laugh. My Psych R.N. this morning even commented on me looking better in a mental health sort of way, not a lawsuit sort of way, and remarked that he's been very worried about me. Nice to hear on both fronts.
I think being on a break from work will be helpful. I look forward to the extra sleep and to bringing back my slow moving exercise program. I was exhausted about an hour after being at work today and sleeping in until 7 instead of my regular 5:30 a.m. so I know more rest will be beneficial. Not having something hanging over my head every moment in the form of school and papers and grades and plans will be a welcome respite. I love my job, I swear I do, but this year I haven't been able to love it or enjoy it very much. There comes a point where you need to ask yourself, "My job or my (pathetic as it is) life?"
Regardless, last year I bought a six foot artificial tree on sale after Christmas. I have never had to put a fake tree together. I've either had a real tree or no tree at all. I adore Christmas and love to decorate but the past few years I haven't. No one comes here at all, ever, so it's no huge loss to not do it but I miss it. So I'm considering starting to try to put the tree together and decorating.
When I was married, I'd drag my "wasband" out the day after Thanksgiving and force him to cut down a tree. Then we'd slap her in the car and I'd decorate it that same day. I'm a freak and I know it but I love those moments between Turkey Time and Gifts and the Holy Day. I felt more serene and peaceful and loving between Thanksgiving and Christmas.
Maybe if I start now I'll find some of those positive feelings again. Plus, it helps to fill up part of my day. You'd be surprised how long the day is when it's more open when there's nothing hanging over your head to be done. "A blessing and a curse," as Adrian Monk would say.
I have new brain MRIs scheduled for tomorrow afternoon but I'll let you know what I decide about the tree, although I'm leaning a lot toward trying it out.
Sunday, November 9, 2008
With the recent election there's been a lot of hullabaloo about the government but I am going to let all that arguing go and just feel proud and lucky to be born a white female in this country at the time when I was (1970). Any other arbitrary twist or turn of fate would bring me to a very different life.
I'm so lucky even though I have stuff to b!tch about that I'm a resident of the United States. I'll also take pause to remember all my grandfathers who were veterans, both my bio-dad and adopted dad, my uncles, and my brother and sister who are both serving in Iraq in the Army right now. Hooah!!
As much as we complain about the war dragging on in Iraq and Afghanistan, at least we have an all volunteer Army to go fight it. There's no draft and we're not Israel where everyone, male and female, get the pleasure of serving their country in the military. Things could be better, they could be worse, but right now I'm proud to be an American.
(Oh, and adopted dad is now home from the hospital. We just learned that he had a heart attack the first day he was in due to the loss of so much blood. Tomorrow he is off to see the ENT to hopefully take the packing out that has been squashed up his nose for a week already and find out why the bleeding started and kept on going. He also sees his cardiologist this week.)
Saturday, November 8, 2008
It meaning the sick leave request okayed. Or at least I think it's okayed. Someone told me it was okayed but there are other someones who don't know that it's been okayed. So I am somewhat certain it's okay but I shall not be letting loose with any loud joyful noises yet.
Dad is still in the hospital. Prognosis is that tomorrow should be the the day of catch and release from the cardiac unit. There seems to be conflicting info coming out about all the cardiac stuff so I guess we'll have to see what the discharge papers say.
I have done some work to get ready for the long term sub and gathered papers and the dreaded outline for the state report that will be done in my absence. The state report is akin to a small child driving their freshly sharpened pencil through your eyeball. Repeatedly. Just sit back and listen....
"X state doesn't have a climate."
"X state doesn't have a governor."
"What do you mean by political party?"
"I can't draw that flag. It's too hard."
"My state doesn't have any major cities."
And on and on it goes until you realize that it would be easier to write the reports yourself.
That's all I've got. Hope you're all doing well.
Friday, November 7, 2008
Yes, dad's still a patient but hopefully coming home tomorrow. They did a second heart catherization last night, which normally takes about 30 minutes, and this latest one took two hours. That's an indication of the damage we're talking about.
The bad news is that of the three grafts from his triple bypass 15 years ago, one had been closed and two were "gunked up with crud" during the first heart cath in the hospital. As of last night's second cath, a second graft had closed in the past twenty-four hours. I spoke with dad today and he said he is scheduled for a third heart cath and some surgery in about a month.
He's not really a viable option to survive serious open heart surgery so that presents itself as a bit of a conundrum. I'll talk to my mother about all of this later on today when she's away from him.
But back to John Bul Dau...
This man is a true hero and to see him up close, to the point where I could reach out and touch his shirt just about made me foam at the mouth and hyperventilate. John is one of the "Lost Boys" of Sudan, if you know anything about their story. The lost boys and girls left Sudan during the civil war to find safety in Ethiopia where they stayed in refugee camps until forced back into Sudan at gun-point, crossing a river infested with crocodiles. He stayed in Sudan until they were forced out again to a refugee camp in Kenya. He lived at that camp for several years until he was chosen to come to America.
Here's a man who has overcome numerous difficulties in his life, most of them as a child. He's lived through starvation, civil war, mass murder, and so many other things that I couldn't list them all and I don't want to because the atrocities are horrendous.
But, there he was working in the hospital where my dad is a patient, not as a nurse or doctor, but someone who cleans or does what we might consider a more menial position. That's just John. One minute he's working two jobs to support his family here in the US and on another day he might be travelling to talk to famous people or large groups to tell his story and raise money for his foundation.
To learn more about John's foundation, click below:
His foundation raises money for health clinics he's having built back in Sudan. This is a man forced to leave his homeland as a child who is willing to turn around and extend a helping hand back to that same place. His story is written eloquently in his memoir "God Grew Tired of Us" and there is also a DVD (available through Netflix even!) of the same name which shows what this man lived through. I urge you to read and view and then put it all back in to perspective.
Regardless, this is a man who is a giant both physically, about 7 feet tall, and in my eyes. I wish I had been brave enough to go speak to him. He is a friend on my Facebook page and there is more information about him available on Facebook under causes, if you're a F-booker. (That sounded really dirty, didn't it?)
Seeing him gave me pause to think that yes, even though there is a lot of rough stuff in the water right now I have a boat, some oars, and a compass. Sometimes I have to remember that it's not all about me.
Wednesday, November 5, 2008
Secondly, my father is the reason I was at the hospital. He was taken to an excellent cardiac care hospital for, what else, cardiac issues among other things. He's lost half of the blood in his body, was vomiting blood, has kidney problems and (duh) major cardiac issues.
He's been swallowing nitroglycerin like they're Sweet Tarts and they found two cysts in his kidneys. His brother was recently diagnosed with kidney cancer so that could be a potential issue. He's now on morphine for the pain and they are treating the blood loss with transfusions as I type this.
I spent some time today on the phone with the Red Cross as both my siblings are active duty Army in Iraq. We were trying to find out the procedure if they need to be flown home on an emergency basis.
The cardiac stuff is the most distressing as they did the heart catherization this morning. Previously, my father had a triple bypass some time ago and has been living on borrowed time, so to type. One artery is completely blocked and the other two (of the three from the operation) have all sorts of stuff in there clogging things up. Translation = not looking too good for heart repair, but you never know.
So if I'm quiet for a day or two, know that I am thinking of my blog but just can't get to it or can't get my fingers and hands to work well. Holding the cell phone and driving (not at the same time) was painful and my claws are in sore need of some ice packs now.
That's all I've got for now.
Tuesday, November 4, 2008
Not even a bruise from the IV which was put on the inside of my right hand. They are some good IV stickers over at the infusion palace. This time I held the remote and switched channels and watched bits of about 5 different cable channels. I don't have good cable at home, just the $8 a month cable that has a few extra channels thrown in for kicks and giggles. I also elected for a warm and pleasant smelling blankie to cover me up while I "relaxed".
I wanted to smack Sally Field in the face again when her once-a-month Boniva commercial came on. Gag me.
Today is my second visit to the new neurologist's office (neuro #5) to see the P.A. I am hoping for a good visit and I will be asking about my MS symptoms, a new MRI, and the supplements I mentioned the other day: quercetin and omega 3 fish oils.
I feel a weight lifted from having turned in the sick bank leave papers. It's done and the committee will say yes or no and there's not much more I can do about it. It's out of my hands and I've done all that I could for that.
My dad is having more problems but did not go back to the ER yesterday; they almost had to go but are playing it by ear for the moment. The heart catherization has been put off for the moment until this other stuff is done playing itself out. Let's just say there has been excessive bleeding, vomiting, and chest pain from a man who had surgery about 20 years ago and told he had about 10 years to live then. Plus, he secretly smokes which he knows, knows, knows is against every rule in his medical book. Eh, men!
I slept more deeply last night and feel tired from Tysabri #2 but if it works, then all of this will be worth it. Maybe there will be a nap in my future this afternoon. Time to go get dressed and ready for the appointment.
Don't forget to vote whoever you choose to vote for in today's election.
Monday, November 3, 2008
My mom called again last night and my dad was supposed to go back to the emergency room. I think he is back home now as I haven't had any phone calls yet. He is scheduled for a heart catherization on Tuesday but that may need to be rescheduled because of the emergency room stuff.
I have plans done for two days at school and I'm working on Wednesday but I don't want to get too far ahead as we know what happens to the best made plans - they get rewritten because of various snafus in life and the classroom.
Today is Tysabri infusion number two and tomorrow is an appointment at my neurologist's office. I want to talk about supplements and my constant fevers and my fingers of lead. Of course, I want to talk about everything that's bothering me but I guess the big stuff is all about the lack of jazz hands.
I also have all the sick leave stuff done and it will be turned in first thing this morning as I joyfully drive my plans in around 6:15. I am hoping that I will stay clear enough to get there in one piece. I have more grades that need to go in the computer for report cards while I am dropping off plans.
I cannot even begin to tell you what a relief it is to have the sick leave stuff done. It ended up being a fifteen page packet that I made into three sets of copies: one for me, one for the head of the union, and one for the superintendent. I spent so much time calling people, typing, looking for stuff, making copies, and whatnot that it's such a weight lifted. Now we just have to hope that it will all work out and I'll be approved for the leave.
Deep breath and exhale......
Sunday, November 2, 2008
My dad was in the emergency room for an emergency but now he is out. Thank you someone upstairs, and I don't mean the Indian couple with the son who seems to enjoy jumping rope repeatedly for hours indoors on my ceiling.
The paper work for the leave seems to be coming together okay now or at least I feel better about it. I have some compiling of papers to do today and then I should be good to go with those packets at the crack of dawn when I drive those plans in.
My kiddos at work have a state test in Social Studies in a few weeks so it's been rather challenging to try and get them prepared when it's not me doing the preparing. I'm a bit of a control freak about those d@mn state tests. But, I am learning to let some things go....
Which brings me to Sunday supplements!
Does anyone out there feel safe in telling me any non-MS meds you're taking, such as vitamins and supplements? I'd love to read what others are into as I am exploring all this new territory.
My freshman college roommate takes some different things: D3 at 10,000 IU daily, Quercetin 1,000 mg daily, Omega 3 fish oils 4,000 mg daily, and a multivitamin.
I am exploring the Quercetin and Omega 3 as a possible addition to my regimen of MS goodies. I currently take D3 2,000 IU daily (plus a once weekly 50,000 IU pill for the next 7 weeks), a multivitamin and some extra calcium.
Quercetin is a strong antioxidant (I think, I'm not sure) and I saw it advertised on my hotmail with Lance Armstrong and this product FRS that has quercetin as its main ingredient. Lance is out of retirement and training again for the Tour de France and he has a rocking body and he trains hard. I know its got to be clean if he's taking it but I suspect this is pricey as I didn't see it at Wal-Mart in just the quercetin form when I looked for it last week.
Anyone care to share what extra supplements they're taking and if they think they're working?
I'd appreciate any info you care to share. I so want my life back and I want to build up my strength so I can slowly run again and shake this fat off of me. Plus, I want to be an awesome teacher again who has tons of energy and enthusiasm. I want to be the me I was pre-MS!
Saturday, November 1, 2008
I'm frustrated, my fingers feel like they are effing useless, my depression is hitting a new high/low, and I'm angry at myself.
I know this isn't a giant problem but my PCP hasn't returned my three calls from last week. Now I will try to schedule an appointment for Monday or Tuesday to see him and get the d@mn letter from him.
I wanted everything turned in on Monday so the process could start but now that's a pipe dream. My notes aren't specific enough from my Psych R.N. and my neuro's PA. I am missing the letter that most likely would be the most specific one.
I called Psych R.N.'s number this morning and asked his voicemail for a more specific letter. I'm sure he'll write whatever I want just to stop me from calling him at this point. I'll get in to see the PCP and remedy that part of the issue. This just moves everything farther back in the process.
I just wanted everything done for Monday so I can turn it all in and have the d@mn process started.
(I just went for an early morning super sloooooooooow walk to just get out of here with my frustration and anxiety. My walking is way off and I'm tight in my lower back. I had to keep stopping and resting on my 20-minute mini-marathon. I only saw one pumpkin squashed, so that was good at least.)
You see, the process goes from my paperwork to the Superintendent's hands to a committee that is yet to be determined from people who work at the different schools in my district. Then the magic people decide yeah or nay for the leave.
I just feel like I'm starting to doubt myself here and I also think I am truly in a flare with the fevers, the fingers, the cognitive dysfunction, and the depression. It's just a different type of flare for me.
Wish me luck and continued strength and perseverance to see this through.