Wednesday, December 31, 2008
Why is it always about you? Why, for once, couldn't I wake up and find that you've done something wonderfully thoughtful for me like drive to Dunkin Donuts and pick up some hot chocolate and a pumpkin muffin? Does it always have to be about you?
And tonight, it's New Year's Eve, and you didn't even ask me if I wanted to go out or have a cozy get-together at home. So now I am doing nothing which may be good because I can't fit into my fat pants still, let alone pantyhose which never fit me as I have the muffin top of muffin tops people. Me naked is frightening and clothed isn't much prettier.
I just wish you'd consider doing something more than the typical quiet blog and put a little effort into me and what I want as I spend so much time thinking about you and trying to please my public (small as it may be).
Sigh, blogs will be blogs...
Tuesday, December 30, 2008
Saturday, December 27, 2008
The chocolate is now gone as I ate a tremendous amount for breakfast (head hanging very low there). I plan on eating a salad for lunch from a fast food place with low fat dressing and then we're back to the Special K cereal plan with my one normal meal a day that doesn't include copious amounts of chocolate.
I don't attend any NYE parties and I only wish I still drank so that helps on the calorie front also. You know you have a problem when your fat pants are straining to button or zip and then once they do it's all you can do to breathe and move around in them. You're afraid that you might have an incident at a store when the fat can no longer stay inside and the metal tabby thing on your jeans might just blow off your pants and hit a stranger at a rather rapid velocity, leaving you with your pants around your ample thighs and someone else with a circular bruise. That kind of stuff can start an international incident if one is not careful.
My fat pants are already double the size of normal people's pants so working my way back into them is a real necessity. Eventually I will be going back to work and I will need to wear pants (versus going naked, eww) and nothing fits me comfortably now. Nothing. I have one pair of summer shorts and some sweat pants I wear around the house but that is not going to work in the real world of teaching. You need real pants for real work.
So I am heading back to the Special K program which I believe was really working according to tightness of the fat pants. They were slightly looser. I was drinking milk and eating on a schedule of sorts. I was getting some protein in which I severely lack. I was trying to keep up exercising every other day with my walking away the pounds program and playing my Wii sports package which would actually make me sweat a bit. I don't eat enough fruits and veggies which is why I will get a salad today. If I buy all the stuff to make it it will cost more and I won't do it. Yes, I am that lazy in the winter and nothing tastes as good as the summer fruits and veggies do.
I'm heading back to the K and there's no stopping me!
Thursday, December 25, 2008
I had another surprise yesterday when my brother also called from Iraq. The best part was that he said he loved me twice which made me feel all gushy and sad and then I cried a little. He called when I wasn't home and was over at BJM's house getting ready for her Christmas Eve party.
Every year for the past several years I spend Christmas Eve over at her house with her family. I don't drink or anything and I go early and am the first to leave but it's a fun tradition that I really look forward to each year. I arrive a few hours before the rest of the guests and help my friend put together some goodies, unwrap plates and napkins, and shell boiled eggs and do other simple tasks. Simple being the name of the game.
We chatter, and arrange food and exchange gifts and get ready for the general merriment that comes with each new arrival. I like her family very much and they always seem to like me well enough in return. It's one of my favorite parts of the secular part of the holiday season.
I tell my cat, Franklin, that his birthday is on Christmas so he got a huge stocking today filled with goodies like fresh catnip, new mice to chew on, balls to roll around and a laser pointer shaped like a mouse. He just ate some catnip and we played with one of the mice for a while. He's now happily settled in his big red cube.
I opened up my last few presents from my parents today and my stocking. I have some fun scratch off crossword puzzle lottery tickets which I will stretch out over the next few days to see if I am a big winner. I made a new lasagna for me today and I'll put some in the freezer for the future. Tomorrow I will head back towards the Special K lifestyle and in another day or so I should be happily back on track because I don't go out and do anything special for New Year's Eve. I'll go over to my parents' house for ham on New Year's Day and that's about the size of it in my quiet world.
Happy holidays no matter what or when you celebrate!
Wednesday, December 24, 2008
Now that is a wonderful gift and the ting-a-ling of the telephone must mean that an angel received its wings! I feel so good right now and it's not just the endorphin high of completing my workout video of 1 mile plus a little extra of the WATP DVD. I'm just so happy to have talked to her and hear her voice. It beats any gift that she could give me.
So here's a shout out to my sis, CNS, the best sister a girl could ask for on this third rock from the sun! I just found out she reads my blog so maybe she'll appreciate the recognition.
It wasn't even so much what we talked about, it was just simply the act of talking and feeling close to her with the Christmas holiday knocking at our door.
As for Special K, I have fallen off the wagon hard for about three days now and tonight is a Christmas party at one of my oldest, err rather one of my longest, friend's home. I go early and help a little tiny bit with the preparations like mixing up a dip and spreading out the crackers artfully on a plate. I'm the first to arrive and the first to leave because I just can't stay up much later than 8 or maybe 8:30, if I am lucky.
That means Special K at home before I go and then munching and nibbling on snacky snacks and cookies and other yummy delicious goodies. Wow, today is turning out to be an awesome day!
Tuesday, December 23, 2008
So I made a supreme sacrifice and went in and ate lunch with the little darlings. All but two of them were delighted to see me and there was much hugging and talking and even some gifts for me! It felt good to be back in the room, seeing what it looked like, talking to the kiddos, and just being amongst humans again.
People think having all this time off is wonderful and it is for the symptoms but the boredom is HUGE! It's like that Groundhog's Day movie with Bill Murray except there's not anything perfect that I am working to achieve. It's just days and days of the same stuff. How do retired people do it? They must take up hobbies or something just to keep themselves from going insane.
Anyways, I didn't exactly eat when they did but I drank water and walked around talking to them. They were so excited and eager to offer up information and ask about me and how I was doing. There were a few that I needed to remember their names for a minute or so but I just couldn't get over how happy they seemed to be that I was there. That was some good medicine for me, all those smiling faces.
Then they had a special after lunch, which in teacher terms means Computer, Library, Art or Music and they went off on their separate ways. After that was the concert and they were begging me to stay and watch it. I hadn't planned on it but I stayed and watched the 5th and 6th graders sing. They did a nice job and I left school with a smile on my face. (I snuck out as the 7th and 8th graders were going up and my kiddos were finding the chairs.)
This seems to be one of the few times when both the kiddos and I were happy at the same time, so I'll take it. Christmas cheer starts close to home and close to your heart. I feel cheered up today.
Sunday, December 21, 2008
Mood: PMSy and I want to EAT everything
MS: Fatigue, low back and hip pain which throws off the walking
Exercise: I did the 1 mile WATP DVD this afternoon with a restorative yoga pose for 10 minutes and a few (very few) exercises to strengthen my core and help with my back pain
It is freezing here, actually freezing with wind chills that blow so strong that it feels like negative ten degrees. I am even cold which I am rarely cold.
I want to eat everything thanks to my PMS. Cereal is like eating air at this moment and doesn't seem to do much to stave off the hunger.
Yesterday my parents came over and we had my lasagna and some garlic bread sticks. I sent them home with lots of lasagna so it's all gone now. Otherwise, I would be inhaling that at the moment. We shared presents and I opened some and there are a few under the tree to open on Christmas Day. I have to say that it was enjoyable and there was no drama at all while they were here. Mission accomplished!
That's all I've got for now.
Saturday, December 20, 2008
Above is an example of a SAD light ( Seasonal Affective Disorder) which I am using rightthismoment. I took it out of its special baggie and set it up. I definitely have SAD on top of my alwaystheredepression. Yes, I seem to enjoy typing words together today and I am doing it on purpose because I can.
I received my EOB (explanation of benefits) from my health insurance company which paid for all almost $3,000 of my infusion of Tysabri. Three grand for about 90 minutes of medicine, wow. Thank goodness I have great insurance but the new year is coming which means deductible time and out-of-pocket payments but only up to $500 so the medicine will be paid off again soon. Whew!
There are about 50,000 people currently on Tysabri which is back on the market after going off the market due to a few deaths a few years back. There has been a new death in the US of an MS patient taking Tysabri. Hopefully, there will be no other cases.
My brother should be on TV tonight at a special wrestling event taped in Baghdad. If you're up to trying to watch fake wrestling he'll be on at 9 eastern time on NBC and will be in the front row with a sign about Mexico, NY. Yes, there is such a place. It's a small rural town out in the country. It's not far from Texas, NY. Apparently we have a sense of humor here in rural New York state.
Tomorrow my parents are supposed to come over for our Christmas dinner of lasagna and garlic bread sticks that I am making. I love my lasagna so it's best that I am sharing it with others. We are supposed to be getting another snow storm so that may be cancelled. If not, there will also be homemade cheesecake made by my mother. Yippee.
That's all I have for random ramblings. Hope you have a safe and happy weekend.
Thursday, December 18, 2008
Tuesday, December 16, 2008
Mood: Blah and I am so flipping hungry
MS: Mostly fatigue, some twitches and buzzing (feet and left arm)
Exercise: No official exercise yesterday although I did run some errands which resulted in standing upright and sweating my brains out
I am hungry. Verrrrrry hungry. I want to eat food that is not allowed until dinner time. Ouch, this could be one long day. Or it could be a short day with me falling into some almonds here soon.
I have an errand to run today (shout out to BJM) plus I need to learn how to use my Wii controller. I finally got the Wii set up yesterday but I have not even tried to play a game yet because it took me about a week to set the darn thing up.
I must plan to exercise today, probably while watching a DVD. I have the "Nanny Diaries" to watch now that I've finished my "Joan of Arcadia" DVD which is a show I've just discovered even though it's a few years old.
Sorry, I'm boring today. If I have anything exciting to add later, I'll edit it in. Ugh, I am a blah gal today.
Monday, December 15, 2008
Mood: Somewhat blah but not completely
MS: Mostly fatigue with some lower back pain, some twitches
Exercise: Yesterday was a one-mile Walk Away The Pounds DVD, then a restorative yoga pose with my ice pack
I am a huge Survivor fan, not meant to be a play on words but so true, and Bob the physics teacher (age 57, methinks) from Maine won. Yippee! He's who I was hoping for even though I couldn't stay awake to see the whole thing. Go Bob, finally someone won who deserved it. He outplayed them all!
I am hanging in there with the cereal deal and thinking about food less except when I am hungry and then realize its time to actually eat. There's so much less boredom or depression eating with this plan. That's a good thing.
I'm not feeling very inspired today but as for the weight it serves a purpose with others so that when they look at me they probably won't approach me, which I wrote about yesterday. Weight as the insulation and barrier. Weight also serves a purpose for me in that if people don't approach me then I can use negative self-talk about me and to me to try and hurt myself and my feelings.
I'm really good at it because I grew up feeling kinda lousy about myself so I keep at it. It's like I don't know how to eat healthily and I don't know how to treat myself well and good and kindly so I keep doing what I know.
Time for a change.
Sunday, December 14, 2008
Cigarettes: 0 (This will always be a zero but is part of my ode to Bridget Jones)
Alcohol: 0 (This will also always be zero too but it makes me look good in one aspect of my life.)
Mood: Optimistic but with some hunger pangs now and again
MS: Some back pain and some muscle twitches in the eyelids, the fingers, left shoulder, the sides of my mid-section and the right leg (sounds worse than it is)
Okay, I survived day one of the Special K eating plan. I did slightly overeat at dinner but not any sweets, so I'll take it as a move in the right direction.
Breakfast is cereal with skim milk and some fruit. I need to eat the fruit here soon. I swallowed my 5 different morning meds, my multivitamin, my first Omega3 fish oil frozen pill (freeze it to get rid of the fishy taste!), and my 5000 IU of D3 with some water.
I can have two snacks that belong to the Special K family along with a cereal lunch. Then dinner is a normal dinner, not a pizza blowout. Good thing I like the different cereals they have.
Someone asked if this was the healthiest thing to do. The answer is of course it's not. But for now it's a great kick in the pants for me. I haven't been eating three times a day, I haven't been thinking carefully about what to eat when, and I like that this is easy, there's not much thinking about it and the plan is simple.
So for now and for me, this is a good start. (But thanks for worrying about me!)
Back to the weight issue. My weight is used as a barrier to keep others away from me, especially men. I use weight to stay away from men because my relationships with them have been generally disastrous. I grew up with a strong attachment to my mother because I wasn't allowed to see my bio-dad for most of my life for different reasons, most of them having to do with my mother.
While growing up, my mother was mostly always angry with me and filled with some angry words that made me feel completely unworthy for the most part. There were times when she was loving and I craved those few and far between moments. I grew up feeling very unloved and feeling unwanted. I didn't have my father around and I was too young to understand why he disappeared from my life. I had a mother who I wanted to cling to but she was so young and busy and immersed in a new marriage that eventually brought new children that she didn't have time for my neediness.
So weight serves that purpose for me. It's a barrier between myself and others because I grew up feeling as if I didn't belong, as if I was all wrong, as if wanting to be loved was a bad thing. Weight keeps people from getting too close and then leaving me because they never have that opportunity anymore, I don't allow it.
More messy stuff dragged from the closet and exposed to the light. Sometimes this emotional stuff can hurt as much as some of the physical aspects of MS.
Saturday, December 13, 2008
Insert musical score from "Jaws" here. Now step on the scale and see if you get eaten by the shark. I always do and it's because I don't treat my body like the temple it's supposed to be. My bod is more like a run-down version of the "Psycho" hotel. A really run-down version. Worse than what you see on the Extreme Makeover Home Edition.
I am falling apart.
And it's not all due to MS.
I have been heavier than normal my whole life, as long as I can remember. When I was young, before school started, I seemed to play outside plenty and run but my Nana used to feed me to quiet me down. I lived with her and my Poppy and my Mom for a while. My mom was preggers with me her senior year in high school and was training to be a nurse and dating so she was gone a lot. There is one night I remember from being quite young where I was crying for my mother and my grandfather told my grandmother to shut me up. She did by giving me candy.
Ah, the sweet beginnings of a distorted view of food in my life.
I can't imagine I'm alone with the distorted view of food thing and the jokes about the scale. I know others who are thin and also have scale issues. Why is that we women allow ourselves to be defined by a number on an inanimate object?
Part of it is health, which I am not really at all healthy. I do exercise now that I am on a leave of absence from my teaching job. I have the time to do so whereas when I work that is all that I do: write plans, grade papers, make up worksheets, and try to find ways to make learning more interesting. I exercise very slooooooowly and sometimes painfully. It's verrrrrrrry low impact and I sometimes pay the piper the next day. It's something I have to do if I ever want to fit comfortably into my giant pants again. Right now the pants I have for my fatter than usual days don't fit and I am concerned about the lack of breathing and moving room in all my trousers.
Ergo, something must be done.
Today starts a new chapter in my life with the scale. I am going to devote two weeks to the Special K challenge where they "guarantee" that if you eat 2 bowls of their cereal a day plus snacks and a regular meal in the evening that you can lose up to 6 pounds in two weeks. You read that right, I am going to pull a Bridget Jones and try to better myself.
I'll keep you updated as each hunger gnawing day passes and I'll also continue to write about weight. The shrink and I had a long talk yesterday about why I stay fat and how fat serves a purpose in my life. Believe it or not it serves several purposes and none of them are healthy ones. This blog is supposed to be about shoving the messy stuff out of the closet, bringing it out to the light, dusting it off, and seeing if any of it really deserves to be kept around. So here we go with day 1.
Feeling: Positive but with some sense of caution
Friday, December 12, 2008
Today is my long awaited appointment with my shrink, whom I adore and have been working with since 2000. I know that some of you must be thinking I am really messed up and you're right. Nah, not as bad as I used to be. I'm one of those gals who holds on to emotional clutter for long after it's served its practical use.
I canceled my last appointment so it's been five weeks of stuff to talk about. I walk in the office, he closes the door and I start my emotional spillage. It's my time and I can cuss or cry or laugh or do whatever I want for about 48 minutes or so.
I also am attending a social function this afternoon with some of my colleagues at one of their domiciles. I'm not one to go out but look at me gooooooooooo. I'm bringing the hostess a bag of little presents and I need to find something to bring that is edible. That means a trip to the grocery store after the emotional verbage has been brought forth to the light.
My dad is home from the hospital and is not scheduled for any further surgery at the moment. He has to have a nuclear stress test in three weeks to see what's going on. He had three stents put in during this last two-hour plus catherization, his third cath in a month.
That's all I've got for quickies.
Thursday, December 11, 2008
The embers glowed softly, and in their dim light,
I gazed round the room and I cherished the sight.
My wife was asleep, her head on my chest,
My daughter beside me, angelic in rest.
Outside the snow fell, a blanket of white,
Transforming the yard to a winter delight.
The sparkling lights in the tree I believe,
Completed the magic that was Christmas Eve.
My eyelids were heavy, my breathing was deep,
Secure and surrounded by love I would sleep.
In perfect contentment, or so it would seem,
So I slumbered, perhaps I started to dream.
The sound wasn't loud, and it wasn't too near,
But I opened my eyes when it tickled my ear.
Perhaps just a cough, I didn't quite know, Then the
sure sound of footsteps outside in the snow.
My soul gave a tremble, I struggled to hear,
And I crept to the door just to see who was near.
Standing out in the cold and the dark of the night,
A lone figure stood, his face weary and tight.
A soldier, I puzzled, some twenty years old,
Perhaps a Marine, huddled here in the cold.
Alone in the dark, he looked up and smiled,
Standing watch over me, and my wife and my child.
'What are you doing?' I asked without fear,
'Come in this moment, it's freezing out here!
Put down your pack, brush the snow from your sleeve,
You should be at home on a cold Christmas Eve!'
For barely a moment I saw his eyes shift,
Away from the cold and the snow blown in drifts.
To the window that danced with a warm fire's light
Then he sighed and he said 'Its really all right,
I'm out here by choice. I'm here every night.'
'It's my duty to stand at the front of the line,
That separates you from the darkest of times.
No one had to ask or beg or implore me,
I'm proud to stand here like my fathers before me.
My Gramps died at 'Pearl on a day in December,'
Then he sighed, 'That's a Christmas 'Gram always remembers.'
My dad stood his watch in the jungles of 'Nam',
And now it is my turn and so, here I am.
I've not seen my own son in more than a while,
But my wife sends me pictures, he's sure got her smile.
Then he bent and he carefully pulled from his bag,
The red, white, and blue... an American flag.
I can live through the cold and the being alone,
Away from my family, my house and my home.
I can stand at my post through the rain and the sleet,
I can sleep in a foxhole with little to eat.
I can carry the weight of killing another,
Or lay down my life with my sister and brother..
Who stand at the front against any and all,
To ensure for all time that this flag will not fall.'
' So go back inside,' he said, 'harbor no fright,
Your family is waiting and I'll be all right.'
'But isn't there something I can do, at the least,
'Give you money,' I asked, 'or prepare you a feast?
It seems all too little for all that you've done,
For being away from your wife and your son.'
Then his eye welled a tear that held no regret,
'Just tell us you love us, and never forget.
To fight for our rights back at home while we're gone,
To stand your own watch, no matter how long.
For when we come home, either standing or dead,
To know you remember we fought and we bled.
Is payment enough, and with that we will trust,
That we mattered to you as you mattered to us.'
Yes, that is my brother and sister in a tiny pic at the top of the poem. I apologize for putting in email poems I've received lately but I thought they were both important. Even if you don't support the wars in Afghanistan and Iraq, please remember to support your all-volunteer military. They work 7 days a week and it's like a dangerous Groundhog's Day for many of them.
I've had a difficult time this year coming up with ideas for what I'd like for Christmas. The other day I was able to Facebook chat with my brother when he was up very late and we talked about holiday gifts. I apologized that I didn't send very much to him this year and he said something which explained why Christmas feels different again this year.
He told me that what we all wanted was to be together for Christmas and that can't happen again this year so that is why it feels different. He's right. If I could choose any gifts it would be both my brother and sister home from Iraq.
Sometimes my brother is a real dork and other times, like this, he's a genius. I guess war really does make you grow up.
Wednesday, December 10, 2008
I received this email at work from a new colleague and thought it was well-written and although I may be only a mere 38, I was hoping this would be me and my attitude as the years go by.
I would never trade my amazing friends, my wonderful life, my loving
family for less gray hair or a flatter belly. As I've aged, I've become
kinder to myself, and less critical of myself. I've become my own
friend. I don't chide myself for eating that extra cookie, or for not
making my bed, or for buying that silly cement gecko that I didn't need, but
looks so avante garde on my patio. I am entitled to a treat, to be
messy, to be extravagant.
I have seen too many dear friends leave this world too soon; before
they understood the great freedom that comes with aging.
Whose business is it if I choose to read or play on the computer until
4 AM and sleep until noon? I will dance with myself to those wonderful
tunes of the 60's &70's (or someday the 80's and 90's), and if I, at the same time, wish to weep over a lost love ... I will.
I will walk the beach in a swim suit that is stretched over a bulging
body, and will dive into the waves with abandon if I choose to, despite
the pitying glances from the jet set.
They too, will get old.
I know I am sometimes forgetful.
But then again, some of life is just as well forgotten. And I eventually remember the important things.
Sure, over the years my heart has been broken. How can your heart not break when you lose a loved one, or when a child suffers, or even when somebody's beloved pet gets hit by a car? But broken
hearts are what give us strength and understanding and compassion. A heart never broken is pristine and sterile and will never know the joy of being imperfect.
I am so blessed to have lived long enough to have my hair turning gray, and to have my youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have died before their hair could turn silver.
As you get older, it is easier to be positive. You care less about what other people think.
I don't question myself anymore.
I've even earned the right to be wrong.
I like being old.
It has set me free.
I like the person I have become.
I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day (if I feel like it).
Tuesday, December 9, 2008
I have a love-love affair with my heating pad aka corn bag that gets warmed up in the microwave. Most MSers can't stand the heat or the opposite, which would be the cold (duh!). I have my reasons for liking both, just not usually at the same time.
It's time for the corn bag/heating pad to come out and play. Last night my right leg (the one that likes to spasm the most) started thumping and rippling a little at bedtime. I threw in a Klonopin on top of the other night-time meds and prayed for the best.
Yippee, I slept but as arousal came I noticed the pop-pop-popping of my right leg in a quiet nagging little way. Good moooooooooooorning, Weeble Girl. That meant I needed to keep moving my leg around to stop the annoying little twitches which is difficult when you're still interested in sleeping.
So now I'm up and the corn bag has been under my leg and it has calmed down. Of course, I am also upright so that means it can start again when I lie down but I have the corn bag at the ready.
My dad also goes back to the hospital today for another heart catherization. This will be his third in about a month. He doesn't have a good feeling about this one but I will certainly update you as time goes on. He's not scheduled until later today and must go in early to receive extra fluids and meds for his kidneys. It sounds awful but I'm not going. I asked my mom if she wanted me to go but she said no, that it would be too long of a day.
And as awful as that sounds, she is right. They're leaving at 10 to be there at 11, he needs hours of fluids, the procedure starts at 3, the last one took two hours, and then he has to remain flat for three more hours. It has not been decided yet if they will keep him in the hospital overnight, although I suspect they will. That's just another thing this disease has taken from me- the ability to do what normal people do and stay awake and take care of things.
That's all I've got for now. I'm tired and going to work on the leg thing some more to see if I can't sneak in some more sleep.
Monday, December 8, 2008
I'm taking today's post from a response that I gave to another teacher with MS who's also a blogger. It's all about emotions and feelings and how they can change and do change through the course of this disease. Just like this disease can change from one day to the next so can the way you view it and describe it. The picture at the top will make more sense in a few paragraphs.
Vulnerable is a good word to use when describing MS and my feelings. I never know when or if something will get better, or if something new will act up, or if something else will just get worse. I'm at the mercy of MS and I'm not all that jazzed about it.
I felt like my blogger friend did after our most recent MRIs which showed positive results. I felt happy but then divided. Why didn't I feel better if some of my brain lesions had disappeared? I know others without a lot of MS knowledge would just assume that I must be better if the MRI was better but I know that's not the truth. It's not the same as a cut that gets a band aid and then a few days later it's all healed. MS doesn't work that way. MS does what it wants when it wants and you're at its beck and call.
MS sure has my brain wrapped up like a See-N-Say, remember those toys from childhood? You pulled the handle and it stopped on a picture and made a noise. Except someone else is pulling the handle and a random emotion comes up. That's how I often feel. What will it be today? Depression, elation, boredom, loneliness, anger, happiness...
That's why the picture is at the top. I know I can control my emotions to an extent but there are some things that are out of my control. I do the best I can and I know my medicines help me. Some people don't believe in antidepressants but I cannot live without them. They keep me from living on a constant pull-and-twirl cycle of sadness and self-loathing. Boy, are those meds worth it.
I may get sadness now and then on my emotional See-N-Say but not every day and that is a step in the right direction.
Sunday, December 7, 2008
Yesterday I went to visit my parents which is more of an ordeal than one might think. I have to make sure that I am properly rested and the weather is okay and the timing is right so I am not driving home in the dark and especially not the dark when it is snowing.
My parents' little town (30 minutes away) was having an Open House Holiday Weekend so I was going out to a few places with my mom. She wanted to purchase a poinsettia and I was going along to look at a few places. When I type a few, I truly mean a few, as in three places and I was done. By the third stop, which was a small and cluttered but beautiful flower shop, I was so hot that it was all I could do to move my giant body around trying not to whack anything and stay upright. I didn't dare try to hold anything because my back hurt so badly I was certain I would drop it and break it and therefore buy a broken item.
I also noticed that every time I went to get in or out of my mom's car, a low-rider type car compared to my PT Cruiser, that my foot could not clear the side of the car. Ever. I had to lift it up extra with my hand on my leg and make a real effort to try a second time to get my leg and foot in or out. I've never noticed that happening before.
I guess this means I am now in my Tysabri type hangover. I have been sleeping a lot, a good 12 hours at night plus a nap even with Provigil for a few days now. (I had my third Tysabri infusion on Wednesday.) I am also having back pain so I will start tracking this in my little calendar dohickie from Copaxone even though I haven't been on C for over a year.
My Christmas cards are basically mailed out. I have my presents primarily purchased but not wrapped. There is no way to put anything under the tree because my cat will attack and scratch it open and who wants a present that is ripped open?
So here I am with no booze but lots of chocolate and my Tysabri hangover period with my Aleve and a really comfy bed and some books to get me through this. Oh, it could be so much worse...
Friday, December 5, 2008
Directions: Once you have been tagged, you have to write a blog with 21 random things, facts, habits or goals about yourself. At the end, choose 10 people to be tagged. Don't forget to tag them in the note. You can't tag the person who originally tagged you.
I was recently tagged on Facebook to write 21 things about me that you wouldn't know. So that will be today's post. Some of you may know some of these things so skip over those tidbits of my fascinating life (snort!).
1.) I love my birthday as if it's a major holiday. If I could have a parade or a show on TV, I would just to celebrate my oldness, err rather my aliveness.
2.) I'm a major geek and check my Feedjit link several times a day to see if anyone new has found me from another continent. I finally got someone from Asia and about peed my pants with excitement.
3.) I love the sunshine but hate the heat in the summer as it sucks the life away from me and gives me horrible spasms.
4.) I have to spray the cat with a spray bottle when he gets too frisky with the Christmas tree and knocks down the decorations. The sad part is I pretend I'm a cop and he's a perp on the run.
5.) Sometimes (hanging my head here) I pour chocolate syrup into the peanut butter container and I eat it!
6.) I was supposed to go in to the Army after high school but did not because of issues with my knee and cold feet. I also almost entered the military again after college.
7.) I used to be a slow but easy runner and I miss it. Nothing quite like running an easy 5 miles and seeing those great calf muscles when you were done.
8.) I am afraid of snakes but getting better at looking at pictures and being in the same room with ones in aquariums.
9.) The two places I'd love to visit that I've never been to are Italy and to Africa (I know Africa is a big place called a continent).
10.) I like to watch the Bonnie Hunt Show (I think she's a hoot) and I prefer the Today Show in the mornings except for on Saturday when I like the CBS Morning Show.
11.) I prefer pens with black ink for general writing and green or purple ink for when I am grading papers.
12.) I once wanted and received the Clapper for Christmas. Sadly, it did not live up to its expectations.
13.) I'm not sure what my favorite color is because I seem to like green and blue about equally.
14.) I abhor horror movies.
15.) I don't drink coffee. I drink mostly cold water and once in a blue moon some hot chocolate or diet caffeine free soda.
16.) I like Cap'n Crunchberries but generally eat Special K fruit and yogurt cereal.
17.) I once drove a little speedboat up on to an island in the Disney World marina when I was about 12 or 13. Oops.
18.) I have my Wii and the Wii Fit and I am terrified I will be unable to put it together properly.
19.) I adore the Jimmy Dean commercials on TV with the sun and the moon and the fog. Pure genius!
20.) Reading is one of my great passions in life, fiction and non-fiction. I also like to find ways to raise money for charities I find worthy, especially charities that support people in Africa.
21.) I am so glad I started writing again. That's a gift to myself that no one else can ever take away.
Here's my tagged list and don't feel bad if you don't complete it. I know it's a lot of work!
Thursday, December 4, 2008
Tysabri is pricey but then most meds associated with MS are, including the injectable meds I wrote about yesterday. Insurance is a huge issue for those with MS (and others of course, too) and coverage can vary from place to place and person to person. I am lucky enough to have great insurance through my employer.
I switched to neurologist #5 because they partnered with a local infusion place that offers all types of infusions three days a week every week. That fit my needs much better than a once monthly opportunity. Ergo the switch to my current neurologist where I see the NP who still seems slightly ADD but in a good way. Not to mention that the place where I get infused is like a swanky hotel where everyone gets their own infusion suite and they have a coffee bar and you get your own TV and DVD player. Oh, and the nurses are great. They get me in one stick every time and I've never had a bruise although yesterday we did switch to the top of the left hand down by my wrist for kicks and giggles.
I seem to have some small side effect issues with the Tysabri, usually involving extra fatigue the day after the infusion. I also seem to have some bone/joint pain in my back in between infusions. That seems to occur closer to the beginning of the time after the infusion and Aleve usually takes it away.
I had an MRI in early November shortly after Ty #2 of the brain which not only showed no new lesions but also showed a decrease in pre-existing brain lesions from an MRI done in May of this year. That's always good news. It doesn't mean, however, that I am miraculously cured of all that ills me. A lot of MS has to do with location, location, location and sometimes damage doesn't come undone.
I'm still very positive about what the drug may be able to do for me. My biggest concern now is fatigue and cognitive issues and one of the nurse's yesterday mentioned that some people get some relief from fatigue around month 8 or so from infusions. I'd love to have more energy and I'd also love to be able to walk at a reasonable pace (dare I even mention jog as I used to be a runner?) and get back some of my intelligence. I want to kick @zz at Jeopardy once more.
Wednesday, December 3, 2008
One of my dear readers was asking about Tysabri so I just thought I'd throw all my info up here for anyone else who may be wondering about it and my process to get this newer medicine.
My major symptoms started in 2004 with fatigue and increased depression. By the end of that year it had spread to numbness on the right side (face, arm and leg), difficulty walking, weakness throughout my body, an atypical L'hermitte's sign (a major vibrating throughout my entire body that struck me for no reason), and nystagmus (a bouncing around of the eyes which can make a gal dizzy). There may have been more but quite frankly, I think that's enough for now.
It took two different neurologists to diagnose me with MS a year later in December 2005 even though I was about as certain as could be that I had it in December 2004.
The first drug I started on (on Christmas Eve 2005) was Copaxone, which is a daily injection that we MSers do on ourselves. I had no problems injecting but I had 5 IPIRs (immediate post-injection reactions) which strike randomly for no reason but feels like you're having a mini-heart attack and makes it very difficult to breathe, move, talk and you feel like a lobster might as its plunged into the boiling water. I went on Copaxone first due to my existing depression issues.
I stayed with Copaxone for almost two years and through two more neurologists (which brings the total number of neuros to 4). In November 2007 the latest neuro and I decided due to some MRI changes and constant fevers and giant raised body welts all over from the Copaxone. We decided together to change to Rebif to see if my body tolerated that med better.
Rebif is a different class of MS med called an interferon which comes with its own special side effects such as flu-like feelings, depression, fevers, and others too fun to mention. Rebif is a three-day-a-week injection but again, the injections themselves don't bother me. I don't freak out about them and never missed one. It was just a quick in and out with some occasional bleeding.
Rebif is a drug that you titrate up, which means you start at a small dose and work your way up to the max dose. It didn't take long for me to have constant fevers again, some cruddy feelings, and major depression rearing its head. My neuro suggested I stay at half dose and I had my Psych R.N. play around with my antidepressant doses and meds. Finally, I seemed to get stabilized with the depression but the other stuff hung around.
Then my liver enzyme numbers started to increase (another possible side effect) and we stopped Rebif for a bit. Then I went back on half dose and they checked the numbers again. Eventually I stopped R again this summer due to liver numbers and feeling cr@ppy most of the time.
My 4th neuro suggested Tysabri as the other interferon injections (Avonex is once-weekly and Betaseron is every-other-day-injections) are similar to Rebif and would most likely produce the same sorts of side effects.
The problem with the 4th neuro is that offered Tysabri one partial day each month and that was it. That meant if you were sick you went without for a whole other month. I think the drug makers made it to be infused every 28 days or so for a reason.
That led me to another neurologist and an okay to start Tysabri in October. I'll tell you more about my personal experience with Ty in part two of this spellbinding blog post. I started this before I went in for my infusion today and I'm cooked as they say at the infusion palace. I apologize for any typing and grammar errors now because I'm not proofreading this one. Night!
Tuesday, December 2, 2008
I took two Aleve last evening and then slept for 12 hours straight. I am still feeling tired but better and my temp is now below 100 so it looks like we dodged another bullet. That's great because it's time for another Tysabri infusion and that already knocks me out for a day and some change as it is.
I have to tell you how peaceful I feel when I plug in the Christmas tree lights and turn on Josh Groban's CD. I feel as if I am in a church where it's okay to just be quiet and calm and let your mind wander. It is so wonderful that I am grateful every time I do these two little things. I try to do it every day so it can be one of those gratitude items I put on my mental list.
I've pretty much finished my Christmas cards for my friends and have them ready to go out in the mail. I try and work on a few cards each day for the Holiday Heroes program I mentioned a few posts back. If you can help by sending in a few of your extra holiday cards, it would be greatly appreciated by the service men and women and veterans; I just know it. The veterans are especially in need of some cheer every day of the year and now at holiday time I know there are lots of you out there who can help out in this small way. Please consider it. (And no, once again I have no relation to the Red Cross or Pittney Bowes but I think this is a wonderful idea and it's easy to do.)
So the latest MRIs looked better, many fewer brain lesions but I still have so many daily issues that just don't go away. Like I said, I'm hanging in there with the Tysabri to see what happens as I travel down that infusion highway. Working is a passion of mine with teaching but it takes so much out of me. Sleeping in on the weekends doesn't catch me up as most people would assume. I mean here I am not working courtesy of MS and sleeping somewhere in the 10-12 hour range at night plus at least one nap during the day and that's with 200 mg of Provigil in me.
Once work starts up again, Provigil will shoot quickly up to 400 mg which is basically the max dose and then it just stops working. That whole process makes regular work so difficult.
Not to mention the cognitive stuff that is embarrassing to me. Losing words, using the wrong ones, saying things that make no sense, forgetting how to do things in teaching, forgetting where I was supposed to be going with a story, sigh... all that stuff stinks.
Most of the time if I'm in charge of the conversation I am pretty good at keeping it together but if I get off track due to a shiny thing this crow starts flying in circles. I get lost and my blunders are embarrassing to me. I have always been the smart girl, although I hide it most of the time at work. There I am just funny, crazy, mouthy girl. If other people ask me questions sometimes I'm on the time delay thing where I'm not sure what they just said and what the proper response should be. Or if I get the question I am missing a word, a key word. Drat, it's so frustrating!
I used to be fairly good at Jeopardy and now, well not so much. I don't think Alex will take "Who is that one guy?" as an appropriate answer. At least I have an awesome tree and beautiful music and family and friends that help me to be grateful.
Monday, December 1, 2008
I took two Aleve and am taking it easy and plan to get some sleep here soon. Not that I often stay up past 9 p.m. because that would cut into my 11-12 hours of sleeping at night.
We did talk about disability at the appointment today and that is something that seems to evoke lots of differing emotions at the same time. I'm still in it with the Tysabri for now and look forward to seeing how that medication works for me. I hope I feel better soon so it won't effect this third Tysabri infusion.
That's all I've got for now. Not so inspired lately with my writing but thanks for stopping by.