Monday, August 31, 2009

Small stuff

Tomorrow I am going to Hobby Lobby (a craft store) with a friend/coworker. I hear this place is going to knock my socks off but I'll be wearing sandals anyway. Not sure what I will be suckered into purchasing but I imagine there will be something I must have.

This will give me some much needed face time with another person. Yippee. I'll be back amongst the living again. It will also be good because I will not be lolling around all day as I have to get up early to meet my pal.

Wednesday will be my first day back to school which means I will be cleaning out my room. Some of you may remember that I had to switch rooms at the end of the last school year. That means a lot of unpacking and organizing. Sigh, what a pain that will be.

Off off topic**
Can someone tell me why I am waking up at 3 a.m. every day? It's freaking annoying. I get up to pee and then am awake for an hour or two. This chit has to stop SOON because work starts next week. I get up for work around 5:30 so this will just not be possible to live on this schedule.

In the immortal words of fifth graders: The End!

Sunday, August 30, 2009

It's official ...

I made the reservations today for my ticket to fly to Maine over my Christmas break. I am going to see my college BFF for the first time in about ten or eleven years. That's so exciting that I am acting like a little kid! We talk pretty much every day but it's been a long time since we've actually been in the same place.

I've been to Maine a few times to visit and she came here when I got married in 1995. The last time I saw her I was still with my wasband and we've been divorced since December of 2000. Since then she's been engaged and built a house with her future betrothed. She's a successful business woman and been kind enough to put up with all my shenanigans for years since we became friends in 1989 during our freshman year at Sweet Briar College.


Off that topic*
How's the eating going you ask?

I don't plan to really start my Weight Watchers program yet. That's a craptacular disclaimer which means I have been eating things that just don't work so well with the program. The good thing is that I think my meds are getting back in to my blood level so I am not as depressed. However, I am lonely as all get out and missing face time with friends. I mean I talk to my one friend (and yes, I have more than one friend, smart a$$e$) every day but there is still that disconnect of being with someone else. In no way am I advocating a loveless marriage just to have someone to talk to regularly.

It would be nice to be back at work for the face time I so desperately need. That is coming soon enough. In the meantime, I have things to do like anticipate my trip even if I will need a seat belt extender, sigh.

PS: BJM, faithful BFF from HS, is supposed to watch Franklin the wonder cat while I am away. Here's a shout out to her as I have been unable to contact her lately for a phone chat. Thanks in advance, B!

Saturday, August 29, 2009

Weight Watchers

I have been on WW before with some level of success and some level of failure. I am considering restarting the program on my own again with the materials that are from the last go round. It means a total retraining of my food brain but I have done it before and I can do it again.

I am thinking about asking my college BFF to join in with me. She wants us to diet/eat better and lose weight before I arrive at her house in Maine. Then we will feast with reckless abandon for a week and then rejoin the WW lifestyle.

I have also made a commitment to using the WW message boards 4-5 times a week, especially this one thread called "Afraid to Lose". It's filled with bright articulate women who write about their struggles, past and current, and their reasons for being afraid to lose weight. Like Dr. Phil says, "There's always a payoff." Even with being overweight there are reasons people stay that way and it's more than just the taste of food.

For me, the reasons go back way in my past but almost always go back to that point where I feel unlovable. I harbor the feeling of being unworthy, of being a bad girl and I'm not sure why I started to feel that way. All I know is that I do feel that way. Part of my talk therapy is to get to the crux of that feeling.

It's time to get out my materials, dust them off, reread and start planning out healthier meals. School is a-coming and it would be great to be in a routine for the start of a new year.

Thursday, August 27, 2009

P.S.

I see that I have had my first visitor from Central America and from another new continent, South America! Yippee.

That means I have had readers from all of the continents except for Antarctica. I'm still gunning for the continent to the south though.

Thanks readers.
Weebs

Depression

I have definitely been in a depression lately. Probably because I have been non-compliant with my antidepressants almost all summer. Doh!

I will be taking all of my meds starting tomorrow. My ADs need to build back up in my bloodstream and work is starting soon. I can no longer spend my days in bed until 3 or 5 p.m.

That's all I have for now...

Tuesday, August 25, 2009

Time and weight

In two weeks I will be back at school. Two flipping weeks, can you believe it? I haven't written much about it because school is still closed until next Wednesday. Then I have less than a week to get my room up and ready after having to switch rooms at the end of the last school year. I think there is still some of the other teacher's stuff in my room that needs to be moved and vice versa. One of the good things about the new room is that I have a SMART board even though I have no idea how to use it.

**Off topic
My cooling vest came today! It's still in the box though because it is so much cooler and nicer today.

**Back on topic
A SMART board is an awesome tool to have in the classroom but it is always better when you have some actual training in how to use it. I guess I will rely on my coworkers to help me out with it and maybe the students too. They had one in their classes last year. I was supposed to get one last school year but because I was out so much of the year they bypassed my room and they never installed one the last two months I was there. That leaves me feeling dumb about the SMART board.

**Other topic
Weight! How many times have I kvetched about that? I have too much of it and need to lose lots of it. But here I am at the end of my summer almost as fat as I was at the beginning of the summer. Heck, I weigh slightly more because I weigh less when I work because I can't eat and drink freely because of the bathroom issues.

I have an appointment with my shrink on Thursday and it is time to delve deeply into this issue of weight. Being obese isn't a good thing ever let alone when you have multiple sclerosis. I worry about waking up and needing health care from someone else like a nurse who would never be able to lift me.

I have to do something about my weight. It's a huge mental part for me and goes back to when I was young and overweight. I have always been overweight except when I was sick with my eating disorder. Then I was thin and purging several times a day and running and doing thousands of sit ups. I just don't know what normal eating is. I need to find out and start down that road.

Sigh, Weebs out.

Monday, August 24, 2009

Weebology: yet another meme

***********FOODOLOGY******


What is your salad dressing of choice?
Ranch or Italian Seasonings dressing

What is your favorite sit-down restaurant?
I don't have one. Weird, huh? I do like Olive Garden for the salad!

What are your pizza toppings of choice?
Meatballs and sausage.

What do you like to put on your toast?
I almost never eat toast but I am considering Nutella with all the new TV commercials.

What food could you eat for 2 weeks and never get tired of it?
Pizza maybe but I doubt it.

***********TECHNOLOGY***************

How many televisions are in your house?
Just one.

What color cell phone do you have?
It's a gray trac-fone.

***************BIOLOGY******************

Are you right-handed or left-handed?
Right-handed.

Have you ever had anything removed from your body?
Wisdom teeth.

What is the last heavy item you lifted?
My dresser to make the bed.

Have you ever been knocked unconscious?
Yep.

If it were possible, would you want to know the day you were going to die?
Nope. No thanks.

If you could change your name, what would you change it to?
I wouldn’t change it. I kind of like my name.

Would you drink an entire bottle of hot sauce for $1000?
No way.

************DUMBOLOGY******************

How many pairs of flip flops do you own?
No actual flip flops but sandals. I wear the same pair of slippers and LL Bean shoes every day.

Last person you talked to?
Lola

Last person you hugged?
My family, yesterday when my brother left.

**************FAVORITOLOGY****************

Season?
Autumn even though it means school!

Holiday?
Christmas

Day of the week?
Saturday

Month?
September

***********CURRENTOLOGY*****************

Missing someone?
My brother who just left for Germany.

Mood?
Refreshed

What are you listening to?
The TV in the background

Watching?
TV's on but I am not watching it. It's more for background noise.

Worrying about?
Getting my weight and health under control!

***************RANDOMOLOGY*****************

First place you went this morning?
The bathroom, of course.

What's the last movie you saw?
The Time Traveler's Wife (I didn't really care for it but my brother paid)

Do you smile a lot?
Not as much as I used to.

Sleeping alone tonight?
Nope. Franklin the wonder cat sleeps up on the bed, too.

***************OTHEROLOGY*****************

Do you have any nicknames?
Velma, J Ski, Weeble, Weebs, Jewel

Do you always answer your phone?
Not if I am exercising or doing something else that keeps me busy.

It’s four in the morning and you get a text message, who is it?
My little phone is always off so no text messages.

If you could change your eye color what would it be?
I wouldn't.

What flavor do you add to your drink at Sonic?
Never been to a Sonic because we don't have them here.

Do you own a digital camera?
Yes I do, an easy to use Kodak.

Have you ever had a pet fish?
No, although I wanted a turtle in college.

Favorite Christmas song(s)
Not sure anymore love them all. I do love the Snoopy Christmas album and Josh Groban and Michael Buble'

What's on your wish list for your birthday?
Surprisingly nothing at the moment and my birthday is about a month away.

Can you do push ups?
Maybe one girlie one.

Can you do a chin up?
No, but I can lift my chin up.

Does the future make you more nervous or excited?
Both for different reasons and the same reasons!

Do you have any saved texts?
Yes, one from my sister.

Ever been in a car wreck?
Yes.

Do you have an accent?
I say no but when I talk to friends in other parts of the country they say I do.

What is the last song to make you cry?
Home by Michael Buble'

Plans tonight?
Nope, staying in as always and watching some TV or some Netflix.

Have you ever felt like you hit rock bottom?
Yes, more than once. Thankfully I have friends who have helped me out.

Name 3 things you bought yesterday?
Orange Hi C, small fries, a McDouble sandwich

Have you ever been given roses?
Many times

Current hate right now?
My fatigue and energy levels.

Anybody change your life?
Yes, for better and for worse. Certain men got me into situations and certain men helped get me out.

How did you bring in the New Year?
Asleep long before the ball dropped.

What song represents you?
Lost by Michael Buble'

Would you go back in time if you were given the chance?
Yes, but would I know what I know now? If so, I would NOT get married.

Have you ever dated someone longer than a year?
Yes, my wasband and I dated for several years before we were married.

Do you have any tattoos/piercings?
Ears pierced and no tattoos

Will you be in a relationship 4 months from now?
A friendly one with my cat, yes.

Does anyone love you?
I think so and I try to return love to them also.

Would you be a pirate?
No way. Too dirty and all that scurvy nonsense.

What songs do you sing in the shower?
Usually made up songs because I am a dork.

Ever had someone sing to you?
No, I don't think so. I am pretty sure Michael Buble' was singing to everyone at the concert.

When did you last cry?
Yesterday when my brother left to go back to Europe.

Do you like to cuddle?
Yes, but only for a certain amount of time and then I get sweaty. Ack!

Have you held hands with anyone today?
Nope.

Who was the last person you took a picture of?
My parents and brother.

What kind of music did you listen to in elementary school?
70s music because that's when I was in elementary school.

Are most of the friends in your life new or old?
A mix, although the best ones have been around for a while.

Do you like pulpy orange juice?
Argh, no.

What is something your friends make fun of you for?
For being a dork.

What were you doing at 12 AM last night?
I was actually awake reading, trying to fall asleep again.

What was the first thing you thought of when you woke up?
I gotta go to the bathroom.

Sunday, August 23, 2009

A shortie

Today my brother left to go back to Germany. It was good to have him home but so sad to see him leave again. He has openly said he won't be home for a few years and he has Afghanistan in his future.

I went over to my parents' house and we had a delicious ham dinner and rhubarb pie. I watched most of "We Are Marshall" with him while we splayed out across my parents' bed. We took some pictures outside on the lawn. We hugged. Then it was time for him to go.

I was parked behind him on the lawn so I pulled out first and headed my way and he went in the opposite direction. I was listening to my pretend boyfriend, Michael Buble', and I started to cry as I drove away. What was Michael singing? A song called "Home"...

Thursday, August 20, 2009

One word answers: a new meme

It's harder than you think!! Here is what you are supposed to do...and please don't spoil the fun...copy and paste into your own note, type in your answers and tag a bunch of people - including me.

Where is your cell phone......................purse
Your hair........................................graying
Your mother....................................worrier
Your father.....................................golfer
Your favorite thing............................books
Your dream last night.........................sexy
Your favorite drink............................cool
Your dream/goal...............................peacefulness
The room you are in...........................living
Your fear........................................illness
Where do you want to be in 6 years........healthy
Muffins..........................................fresh
One of your wish list items...................self-confidence
Where you grew up........................... rural
The last thing you did..........................typed
What are you wearing.........................clothes
Your TV..........................................news
Your pets........................................sleeping
Your computer.................................necessity
Your life.........................................quiet
Your mood......................................pondering
Your car.........................................silver
Favorite store................................. unchosen
Your summer...................................dwindling
Your favorite color.............................green
When is the last time you laughed............evening
Last time you cried..............................yesterday
Three of my favorite foods....................chocolate, cheesecake, pizza
Three places I would rather be right now....... Maine, Washington, Italy

Leaving on a jet plane maybe?


I may be leaving on a jet plane but instead of going to Roma it looks like I will be going to Maine instead. My BFF from college lives in Maine and she asked me to come if I didn't go to Italy. So Christmas looks to be stateside but happy in a different way.

I haven't seen my best pal in about ten years, since I was still married. My siblings will be in Rome and my parents will be in Las Vegas. I stayed home alone this past Christmas as my parents were in LV and my siblings were in Iraq. At least this year I know everyone will be safe. I guess holidays truly change as you grow up and everyone moves away.

It's sad in a way because we'll probably never have a Christmas where we're all together again. Both my siblings will be in the Army which will take them far and away and my brother has told us he won't be home again in the states for a while. It's the same with Thanksgiving. Those are my two favorite holidays and we're so far apart. Maybe that's why those two days seem more special than ever now that we're separated.

I guess going to Maine will just be another way to celebrate. And I'll be able to decorate two trees instead of just one. You have to look on the bright side.

Sunday, August 16, 2009

Happy birthday


Happy belated birthday to my blog, Happy belated birthday to my blog, Happy belated birthday to my blog, Happy belated biiiiiiiiiiiiiiiiirthday to my blog!

I went back today to look up when I started ye olde blog and it was at the beginning of last August. So somehow in all my summer slothiness I missed my 1st birthday. So here I am celebrating a little bit late but you have to admit my cake looks fabulous. There's plenty of cake for all of you and the best part is it contains no calories.

I reread all of my August entries and thought to myself, "D@mn, I used to write well!" I'm not quite sure what happened to me along the way but I feel like you're not getting the best of me anymore. Maybe the slow corroding of my brain is eating away at my humor cells.

I do notice I am not complaining about going back to school and being afraid of it like I was last year. I am not in as much pain as I was so I will place the thanks for that squarely on Tysabri. A few more infusions and it will be my Tysabri year anniversary. Tomorrow is infusion number eleven or twelve but because we get them every 4 weeks you have more than 12 infusions in a calendar year.

I'm looking forward to my Tysabri as always because I get to watch real cable TV. Afterwards I am going out to lunch at Applebee's with a colleague of mine so that will be nice too. I may even sneak a drink in there at lunch. Then again I may just have water. That will save some calories and some money. Money is always running low at this time of the summer.

Everyone always says teachers have such a plum job getting summers off. It is great, don't get me wrong, but we don't get paid in the summer so you have to save money all year long so you can get through your summer. We have to be good financial planners although I am in some serious debt. Serious debt. But I live with it and try to live within my means and pay it down.

Anyway, thanks for reading and commenting and telling me things in person or on Facebook. It means a lot to me to have people who still read even after a whole year. Thank you!

Weeble Girl 8-D

Friday, August 14, 2009

Cooling vest


Above is a picture of the cooling vest I ordered today. I am tired of the heat and humidity of the past few days so I relented and purchased one from the MS Shoppe. It was marked down to $135.99 I think, if my memory serves me correct. I am hoping this will be a good buy for me.

I got the biggest size to fit my portly frame. I figure I can wear it on hot days and maybe I'll even debut it at work when I go in and try to set up my new room in September. If it's really helpful then maybe I'd even break it out during the hot days at the beginning of the school year because we don't have any air conditioning.

We'll see how it fits and feels first, before I wear it at all. Then if it fits and feels okay I can wear it around my little apartment. Then maybe I can move it out into public and see how I adjust to life with a cooling vest. Perhaps I'll sew a letter or a snazzy symbol on the vest so I'll be like a super hero for those with MS.

Anyone have any ideas about what I could sew on there, feel free to drop them off as a comment.

Does anyone else have a vest that they actually use? If so, how does it work for you? I'd love to hear any responses you might have.

Thursday, August 13, 2009

Thoughts....

I wonder if other MSers wonder what the future will bring for them. It's been on my mind lately and more so now that I caught this story from Facebook that showed MS in mice being cured at McGill University. Here's the link to copy and paste if you'd like to read more:

http://www.physorg.com/news169211700.html

I also saw on Facebook today a comment by another MS blogger about seeing an older MSer using a walker and being helped to the bathroom by her daughter. She hoped for a cure so she wouldn't be in the same situation. I responded that I would like a cure too because I don't have any kids or a spouse to help me if I was in the same situation.

I sometimes wonder about life with MS five, ten, twenty years from now. I know MS brings with it so many surprises. That's perhaps the most difficult part of the disease when you're in remission, the unknowing of what will happen next. Will I wake up unable to move part of my body? Will I wake up with vision issues, unable to see from one eye? Will I wake up with such weakness or numbness that it affects how I move?

They say people don't get MS until they get MS. That may be partly true in some sense. MS is so different for each person who has it that even if we all blogged about it no one would be able to keep up. Heck, I can't even keep up with all the blogs I have listed on my page.

But I worry. Will I sleep through the night without leg cramps? Will I wake up tomorrow with my numbness back? Will I make it through the school year? Will I remember the words I want when I am speaking?

What happens to me when a big relapse comes? I have so many stairs to get in and outside which makes even things like getting the mail or getting groceries a marathon. I have had to use a cane in the past when I have had severe leg weakness. I have had times where I couldn't drive because of leg weakness.

Who will be there to help me? I have no children I can put to work on small chores and I have no spouse. I live alone. I sometimes fear that I will need help but I won't have anyone to help me with that.

Sometimes living with MS is a scary thing. I can't let that run my life or ruin it but it is something I think about.

Wednesday, August 12, 2009

Adding to my home pharmacy

Today was a day for drinks with the girls but I didn't go. Instead I made the decision to finally call the neurologist's cute initially guy and ask him for another prescription. I have mentioned before in other posts that he offered me Ditropan for urinary urgency at my last appointment and I said no.

Then I almost had some accidents this past week and I thought about my almost accident on my last day of work. (And that was a day when I could use the bathroom whenever I wanted!) I decided to give this stuff a try or else I was never going to be able to drink at a normal level ever again. I don't drink much now and even less when school is in session.

So I put a call in and waited for him to call back. I told C.I.G. (cute initially guy) what I wanted and he promised to call in the script for me. He did and I just picked it up a little while ago with some A&W diet root beer. (I have been jonesing for soda in the worst way lately and this way I could have soda and root beer floats!)

I'll start the med tonight with the rest of my pharmocopia, which is a word I think I may have just made up. Then again, it could be a real word just spelled horribly wrong.

Side effects include dizziness (what's new?), weakness (again, what's new?), dry mouth (so I drink more) and possible vision problems. Hopefully the dry mouth won't be working against my urgency at the same time. Drinking more = needing to go more, right?

I'll keep you in touch with how it all works.

Sunday, August 9, 2009

Mishmash ...

Finding Nemo Alert**

I missed the last 15 minutes or so of the movie and I need to know how it ends. I mean I can guess how it ends but I need to read about it. So can anyone help me? Lanette, are you out there?

I think I left off with everyone in Sydney and the pelican gently putting Marlin and Dori(e?) back in the water at the dock. Then Marlin was telling Dori(e) to leave him alone and he was starting to swim away. I think they had tried to get to Nemo but it didn't work out.


Brother update**

I went out to lunch with my brother and my parents this afternoon. We went to the Chinese buffet and we were there almost two hours between eating and mostly talking. My sibling brought his digital camera and I looked at 600 pics of his month-long trip throughout Europe. He also brought me some paper money from different places to look at and some post cards.

It was good to hug him because the last time I saw him was in the early part of 2009 when my dad was really sick and going through three open-heart surgeries. My brother gave up his leave to Australia and was flown home from Iraq. At the time my brother and sister were both in Iraq and both had come home because my dad was so sick.

This time when he was home I knew he didn't have to go back to Iraq so that was a real relief for me. I know he will go back to Germany where he is safe for now. His unit has been home (in Germany) for about three months or so. One of those months was his European tour. Since his unit has come home there have been three suicides amongst his fellow soldiers. That gives one food for thought. Sometimes coming home is safer but not easier for soldiers.


Potential trip**

My brother and my sister are planning to go to Italy for Christmas. My sister is stationed in Kentucky now that she is done with her tour in Iraq. My parents are supposed to be going to Las Vegas for the holiday. My brother mentioned that I could come with the siblings to Italy. At first I said no because of the cost but now I am thinking about it.

I have wanted to go to Italy for a few years now, mostly due to Frances Mayes and her books Under the Tuscan Sun and Bella Tuscany. There are also some great cooking shows on PBS that focus on real Italian food that make me salivate when I see them on the weekends.

Anyway, back to the topic now... I am really thinking this whole thing over. My brother doesn't plan to come back to the US again any time soon. His next tour will be in Afghanistan and he already has a potential deployment date for that tour. My sister will also most likely be deployed again which means who knows when we'll be able to spend another holiday together. So this might be our only chance to enjoy Christmas together in Italy for years to come.

Anyone want to send in donations for my potential Italian holiday?

Saturday, August 8, 2009

Finding Nemo and my brother!

I have never watched "Finding Nemo" before and it's on TV tonight. I'm watching and enjoying it. I'm not generally one for kids' movies but I have been interested in this one because Ellen DeGeneres does a voice in it. I think she's a hoot. I catch her television show a lot too. Can't wait for her new episodes to air in the fall.

As for my brother, he's been in Germany since he came back from Iraq. He just made a surprise visit home tonight. My parents didn't know he was coming and neither did I. My sister (she's also in the Army in Kentucky since her tour in Iraq) knew he was coming home but never mentioned it. I guess no one told me because they thought I'd tell but let's face it, with my MS, I am more than likely to forget. Half the time I forget what people first tell me because I just don't retain it. It's that whole pause-delay thing again but it happens with plain English too.

Another random tidbit... I went to the library yesterday and picked up the new Diane Mott Davidson caterer mystery called "Fatally Flaky". I love to read her novels and this is her brand new title that came out last month. I was reading something else but switched to her book this afternoon while I lolled around in bed. It's so good.

I also have a major desire for cake. I want cake with some ice cream. It's more than a month away until my birthday but I want that cake now. CAKE. I'm like Cookie Monster gone awry from cookies to cake. Me want cakey!

That's all the randomness I can muster for today.

Friday, August 7, 2009

Fresh smell (and no it's not me)

Okay, I am going to admit my major dorkiness for the day. I have changed the bedding on my queen sized bed and I am loving it. I love, love, love the smell of fresh sheets, pillow cases and a comforter.

I inhale all the smells of the laundry sheets and detergent and smile like a giant goofball. I sprawl all over my queen-size bed and just smell it. I hold the pillows up and smell them. Then I turn on my back and feel the fresh bedding beneath me.

The only thing better would be if I had a clothesline to dry my bedding on. Alas, I live in an apartment and there's no way that I can wrangle that to fruition.

I also will tell you something else. I sleep on top of my comforter with a little blanket on me. I have a Sesame Street blanket from when I was in college that I use. Why not sleep under the comforter on the sheets? It's just the way I roll. I've been doing this since about fifth grade.

Usually my wonder cat, Franklin, hears the whole shenanigans going on with the changing of the bedding and he comes rushing up the stairs. He likes to be in the midst of it all. He gets in the middle and is on the sheet as I am trying to fit it in the corners but this time he missed the whole thing because he was sleeping on the sun porch. Wonder of wonders that I could make the bed all on my own.

My name is Weeble and I love the way my bed smells right now. Yep, that makes me a dork but I'll take it.

Thursday, August 6, 2009

Good news

Good news: The thigh numbness is gone. I am chalking it up to an MS fluke.

In other MS news, I am going to call cute initially guy and ask for a new med to be added in to the mix. I had another almost near accident today and thinking about another near accident last week at work makes me reevaluate things. He suggested adding in Ditropan the other day to help with bladder urgency.

I think if I start it now then I'll get any potential side effects out of the way before school starts. By the way, did I mention that our school building is closed for the entire month of August? That means I can only get my new room in September to get the room set up. Which also means that I just cannot worry about the whole school thing right now so I am not.

Other than that there's nothing else new. My legs and back are still giving me some impish problems but not anything bad. I'm just watching and waiting. Most of my waiting is spent in bed asleep or reading. I do love me a good nap and a good book.

Later taters! (Also stolen from Mike!)

Wednesday, August 5, 2009

A bit on my thigh

No, I won't be showing it to you but my right thigh is numb. I woke up this morning with this new symptom. Could be the start of a new flare and that just wouldn't be fair, especially after I saw initialy guy yesterday.

I now return you to your regularly scheduled internet. (Borrowed that from you, Mike!)

Tuesday, August 4, 2009

Neuro appointment

A quickie:

Drove out to see the neuro today, err rather his N.P. or his P.A or something else with initials. I get the funny guy who speaks good English; that was my choice when I first went there. The other doctor is good but when he speaks my hearing is on a pause-delay system and by the time I understood what he's said, he's on to talking about something new.

So I go to see funny guy and I don't really have much to report. I talked about the urgency issues for #1 and #2. He suggested Ditropan (sp?) for issues with number one but I told him I'd rather hold off on more meds for now.

He suggested I actually take the fish oil that I store in the freezer and that will help me with my leg cramp issues. The more I do physically, the more I cramp.

I told him I noticed that I walk slower but that's just the nature of this beast. I can walk, heck I could even do something akin to a run if absolutely needed (it just wouldn't be pretty or feel good).

We shot the chit for a while as we usually do and then he brought up the oral meds coming out within the next year or two. He told me flat out that they would not be suggesting or allowing any of their patients to start on the oral meds right away. He said that he is hearing their efficacy rate to be around 45%, which he says is lower than anything out on the market already. They are coming with some hefty possible side effects like heart problems and lymphoma. Then again Tysabri, my current med, comes with the possible side effect of PML and death.

So I won't be switching from Tysabri any time soon. I will watch what happens with the oral meds for the first few years and then see what happens. Maybe down the road I won't need to take time off each month for an infusion. Maybe I'll just pop a(nother) pill and that will be all I need to fight off MS, plus all the symptom meds.

Either way, in the meantime I'll still be seeing the kinda cute initialy guy. I have another appointment in six months and we're not doing any new MRIs unless something comes up between now and then.

Sounds like I am doing okay for being on summer vacation, folks. Now if we can just make it through setting up my new room at school in early September and make it through the whole school year we'll be doing swell. It would be the bees' knees, baby.

Sunday, August 2, 2009

Today

To what we call today, that is what I've decided to write about. What did I do today? First off, I woke up around three a.m. for the bathroom and was up for a while. Don't ask me why but I decided to eat breakfast then. Yes, at three a.m. And what did I eat? A bowl of my freshly made veggie beef soup.

Then back to sleep after being up, eating, and reading for a bit. I slept until almost 8:30 a.m. I was up to feed the cat, go to the bathroom, and then back to bed to read. I fell asleep again and woke up around 11 which was just in time for my alarm. Well, I had twenty minutes to spare with the alarm so I was doing well.

Shower and coiffing and then some online time before I left to go to my parents' house for lunch. I managed to cut myself in the shower while shaving my legs in the same place I always cut myself. This led to major bloodletting and a nasty looking cut on the back of my right ankle.

I drove to the grocery store to pick up some already barbecued chicken and fruit for the luncheon with my parents. I arrived at their house on time. I could notice that my left arm was weaker than my right as I was helping out by shucking the corn. I could also feel a visible weakness in my back and a slower walking rhythm. I was still tired after we ate and I realized that I had forgotten to take my morning meds cocktail. I also don't take Provigil during the summer so I sleep a lot. I wanted to lie down over there but I didn't have my C-PAP so there wasn't an afternoon nap.

I had a nice visit and I was hoping for a phone call from my brother in Germany as he usually calls my parents then. No dice today though.

I drove back home and read and tried to sleep. It was too late for a nap according to my body clock so I am now looking forward to an early bedtime. I go to see the neurologist on Tuesday and I know he will not be happy with my weight and lack of concerted exercise. I imagine we'll talk about finishing the school year out for the last two months and my plan for the new year starting in September (the day after Labor Day is when we officially start working). I'll mention my tiredness and my walking which is soooooooo slow compared to everyone else, and my bowel and bladder urgency. When I have to go, I HAVE to go right then. Sometimes it just comes upon me likethisfast and I have to go within seconds or I will have an accident.

Yes, I have had accidents. That's embarrassing to put out there but it's true. There have also been times when I have been at work or out and have almost had accidents, too. My shrink has suggested using "products" to deal with this but for now I can usually get to a bathroom in time when the feeling comes on me. I just have to monitor how much I eat or drink at certain times. You'd think I'd lose weight with this kind of program. Plus, being 38 and dragging my cart around at Wal-Mart with a giant bag of "products" in it is not cool when you run into your 10 and 11 year old students.

So that's my life today, totally in the present. Could be better, could be a lot worse.

Saturday, August 1, 2009

And now...

Yesterday was all about the beginning of my life with multiple sclerosis. Today's writing will be about my life with MS now. I am doing much better with it. I've been diagnosed since December 2005, seriously ill with it since December 2004. Looking back I can see signs of it before even then. I was always seriously fatigued, even going back as far as high school when I should have been full of vim and vigor.

There's lots of little things that connected the dots to the diagnosis of 2005. Severe pain and weakness in my arms thought to be carpal tunnel syndrome, falling down when I tried to maneuver a curb at the mall with my friend BJM. Cramps and twitches during and after my running.

Then came three days in the hospital and a final diagnosis.

Since then I do not spend all my extra time on MSworld.org searching through posts. As a matter of fact, I stopped by the other day for the first time in about 4 months! Now I do spend time reading some of my favorite blogs written by fellow MSers. And there are lots of blogs out there, trust me.

My family recognizes the MS now. As a matter of fact, my mom wants me to move into an old folk's home so I can live without stairs. There are lots of stairs where I live now. (I'm not moving in yet!)

I now take a medicine called Tysabri which is a once every four weeks IV regimen. I call it my tune up. I have no site reactions or post injection reactions like I did with the shots that I started with a few years ago.

I'd like to write more on this but I am feeling tired so I'll end this for now. More to come, I promise.