Tuesday, September 30, 2008

Tuesday, don't let me jinx myself

Good news abounds:

1.) Tysabri infusion number one is scheduled for Monday afternoon. Yes, this upcoming Monday!

(Not sure of the costs yet but I suspect someone will tell me.)

2.) I also spoke with the retirement people about my potential early retirement and there is some time when I worked for the state and I can use my subbing time (and possibly work I did in college for credit hours, but probably not) to put towards my ten year retirement goal.

I have to fill out paperwork and it will cost me money but even if it's six months or so it would be worth paying for it.

3.) Today did not suck total butt at work. I taught all day and mostly didn't do too many asinine things. I am getting observed on Thursday (surprise!) and I already told my boss there will be no bells and whistles.

I do have to type up my lesson plan the old-fashioned way so that will be the hardest part of it all.

4.) Pysch R.N. appointment is tomorrow.

Time to go move laundry to the dryer and find something that passes as a meal. I do appreciate all of your comments and words of encouragement. It does help. Look, I'm already not half as b!thcy as I was yesterday. That is thanks to all of you!!

Monday, September 29, 2008

Monday, plan of stupidity

The plan didn't work so well. I have decided to just keep on planning and most likely teaching everything. It's too much hassle to find work for someone else to do because if I'm already explaining it then I might as well just do it.

I called the psych R.N. and will be seen there on Wednesday. That's something to look forward to in my pathetic existence.

I called the neurologist's office hoping that maybe they'd offer me a round of IV steroids, which I abhor by the way, but I am desperate. I told the nurse about my daily fevers, and the pain in my back and legs, and the cognitive stuff and the depression. The nurse talked to the P.A. who said, "Yep, it sounds like your MS is acting up."

No sh!t, Sherlock. Then they offered to write me a note so I can get out of work.

The ultimate advice was to wait until I get Tysabri, which is at best another week and more likely two weeks away, because that will solve all my problems. (Yes, that's the gist of the conversation.)

Wow, are you kidding me because I know people who are on Tysabri who weren't miraculously cured with one infusion or even many of them. I must be special.

I have not felt really decent for several days in a row since about April which is when I had the last round of steroids. Go figure.

I'm miserable in the heat and May and especially June were horrid for me to try and teach and not want to hurt small children. Summer was a mess because my apartment has huge windows which face the sun so my apartment was always ridiculously hot. I hardly ever went outside which is one really awesome way to not spend your summer.

I have been "hanging in there" all summer with the other neuro's office. I am so f*cking tired of hanging in there. This hasn't been days and not just even September where I have been feeling lousy. It's been most every day since May for crying out loud.

I stayed tonight and cleaned off my desk and put out buckets for their assignments that the children don't do. Then I have to remember who didn't do what because they have missed three things and need new sheets. I can't find the d@mn sheets. I can't find my sanity right now.

I am so sick and tired of waiting and hanging in there. Right now the rope is fraying and my plan is obviously stupid because it just doesn't work. Another brilliantly f*cked up example of how I can't do the smallest of things to make it better. There just isn't the time during the day to plan it all out because I have to spend every waking moment involved in some aspect of this stupid job, like marking papers which I can't remember what the answers are even though it's the twelfth paper I've marked. It's like looking at a blank slate every time.

I know everyone wants to help but it only ends up with me having more work and more panic and more anxiety.

Now I need to go because there is more work that isn't done, of course, and I need to devote the rest of my evening to maybe finding something to eat and then grading more work and making up new worksheets because this math group couldn't be much lower.

Yes, I know I'm b!thcing but I think I have earned it. That's what happens when you hang in there for five or six months. You start to hurt and feel frustrated and mad and angry at yourself because you can't do one thing right that will help you in the long run.

I cried coming home in the car today and my contact fell out. I'm praying and begging for help here and I'm in more pain today than normal. I know we all have burdens to bear but could someone else take this for a while?

I've just reached my limit.

Saturday, September 27, 2008

A step forward

This will be short but I've done something proactive this evening and asked for help. I called the special ed teacher who works in my room and asked her to help me with teaching. She said okay and she'll start teaching most of my ELA and Math in the mornings.

I'm not one to ask for help but she had offered at the beginning of the year to do this so her brain wouldn't rot while she had to listen to me blather on and deal with the inclusion students. She wants to be active and help out so I am putting her out there as the point-woman and I can tag in and provide support for a while.

I am hoping this may be the thing to get me through to the point where new or increased meds can help with the depression.

I also went to the hospital lab this morning and had the JC virus titer done that is needed for the Tysabri wheels to continue to turn. Yesterday I received an approval letter from my insurance company for Tysabri. It looks like major medical should be making this a viable financial option for me.

I also went to see my parents this morning and picked up my birthday loot. I got some nice things but I think they also had the chance to see that I'm not doing so well. I look like hell and feel like it, too.

The big thing is that I asked for help. I have to be proud of me for that.

Friday, September 26, 2008

Birthday time and depression

Normally I love, love, love my birthday. My friends from college might remember that my birthday, in my mind, is somewhere up there with the biggies like Christmas and Thanksgiving. I enjoyed the noticing by others that I had achieved another year of greatness on this planet.

This year it's just different. I'm quiet and I have stopped eating most of the things that I used to indulge in that would "make me feel better". When a fat girl gives up cake, something big must be going on.

I'm going to make a call to see if my Psychiatric R.N. can get me in next week and look me over in my currently depressed state. I need something, maybe a few somethings. I am on an antidepressant medication, which was doubled shortly before school started, and an anti-anxiety medication currently.

Without those two pharmaceuticals I wouldn't be working at all. (Oh, and add in the Ritalin which keeps me awake enough to get through the day in my own flat feeling way. I'm not ADD but take Ritalin as a prescribed stimulant after Provigil stopped working back in June.) These meds keep me a step above suicidal thoughts but they aren't far away.

If you've never truly battled depression then you, dear reader, are a lucky soul. It's been something I've wrestled with most of my life. I've been medicated for it for years since I had the staggering genius to call a close friend to take me in to the local mental health center when I was in the midst of a new job and working towards my divorce from an abusive husband. I was whispers away from another attempt as a grown up but I'm a coward and not willing to hurt myself enough to actually kill myself in a nasty effective way like hanging or a gun shot.

I don't mean this to come across in any way as kidding around and making light of depression. I spent my fair share of childhood years sitting in the back seat of my parents' car crying silently to myself because I felt so alone. I spend nights now sitting with head in hands, sobbing, praying that this will stop soon. This is a pain that goes to the core, to the soul, to the mind, to the heart. It sucks the good feelings away from you as easily as snuffing out the flame from a match.

I know there isn't any reason for me to not be depressed because I am no more or less special that anyone else on this Earth. But sometimes I wonder why does it have to linger so, why does it have to be so thorough, why haven't I reached my limit where it's been enough and it stops.

I teach students with multitudes of problems. I was one of those students at one time. Shocking news for most people. I'm a fairly intelligent individual who grew up shy and frightened to death of being left behind, left alone. Perhaps I felt the loss of my biological father at a young age and internalized that loss somehow. I was one of those kids who was homesick during sleepovers. I thought my mother would leave me behind. I needed her. Yet somehow, through all that needing, I guess I must have done something wrong because I always felt that way, never sure of where I stood or what I could to do to make her happy.

Deep depression began in the grade I currently teach. Imagine being nine or ten and wondering what it would be like to cease to exist. To just vanish. I felt invisible and my anguish grew.

Suicide attempts came in forms of pills and razor cuts. In middle school. My middle school was grades 5-8. The police would come, slide me in the back of the car, and drive me to the hospital. They would clean me up and send me home again with the promise to go to therapy. We'd go a few times and then stop because it was an inconvenience for "them". To stop working and take me to see a doctor to see why I wanted to hurt myself was simply an imposition. That's a powerful message.

There was one time in ninth grade when I stayed at a psych ward for 48 hours which become a week, then two, and then started heading into months. Imagine what it was like to be a child amongst a few other children aching that badly, mixed in with adults who had a variety of issues. I was promised things that didn't happen and I was basically removed in commando fashion by my parents who abruptly showed up one day and took me away. I recall feeling angry and deceived by the people who worked in the facility where I had been staying. They knew I was leaving and were instructed not to tell me what was to come.

I had to sit in the back of my parents' car with my brother's car seat on one side and my mother's husband on the other side. He was wearing a suit. I remember him sitting next to me and muttering and feeling trapped. I had finally started to feel better, safer, like I was making progress in my life being away from my family.

Then we went to another hospital where I briefly stayed and was cured within 48 hours. Then I went home and it started all over again.

If you've read the book or seen the movie (both are equally fabulous and haunting) Ordinary People, that is perhaps what feels the most authentic to me. Never being forgiven for that one thing, that surviving and not being right in any way. Except with me it was both parents who felt that way, not just one.

When you do things like that, you act out, you have your "trouble" as my mother calls it, you are never forgiven. No one mentions it except once in a while she might remind me that I gave them "trouble" when I was growing up. I don't say anything because I've already been told that what I remembered was wrong, that my feelings were wrong, that I was all wrong.

I turned later to bulimia, a slower way of trying to kill yourself I guess, but more acceptable in my household. I became thinner and more attractive. I've mentioned this before, the hours of exercising with thousands of sit-ups, diuretics, diet pills, and laxatives. More suicide attempts and another hospitalization in my sophomore year. It was almost Regents time, for those who live in New York state you know what I mean by that.

I studied for my Regents exam dutifully while locked up for a week. I was allowed to eat and vomit there unchecked. I got to talk about my feelings and then I went home cured again. I recall my family stopping on the way home to eat at a restaurant. I left the table to use the restroom and my father made a smart remark about my "bulimia". How thoughtful.

I was bulimic and angry and a mess for years. I repeated my ninth grade of high school due to the first aforementioned hospitalization and later entrance into a special program for emotionally disturbed students. People don't know that about me. All of this is highly secretive information.

The next year I returned to regular high school and was promoted to tenth grade even though I hadn't finished the prior year from about February on. I made the school put me back in ninth grade and redid the year with all new kids while the people that had been my peers whispered about me and made fun of me in the halls.

I still graduated seventh in my class. I was an honors students. I worked part-time during school and ran to stay thinner and smiled. I played along but hid the depression because there was no one who could help me. I had learned that lesson by then. Imagine being thirteen, fourteen, fifteen, sixteen and knowing that no one would ever come to your aid. No one would help you. That's another powerful message.

Some people just hurt all the time but they know enough to cover it up. I learned that to be a good girl, a better girl, I had to shut up and stay thin (no matter what) and smile and then maybe someone would look my way and throw me a morsel of kindness or attention now and then. I lived like that for a long time.

Most of the time I still do.

Thursday, September 25, 2008

Spent (and I don't mean cash)

I have sucked it up and gone to work the rest of the week after taking Monday off. I am now completely exhausted between work, MS, and my period. There's a gift that keeps on giving; giving me cramps and bloating and low back pain and extra fatigue. Thanks Mother Nature!

Tomorrow is my birthday. We have to go listen to Curriculum Mapping (in my head Crapping) Lady at another school. Then we need to drive back to our school and listen to someone else blah blah at us. The good news is that I can sleep in because someone else is picking me up around 7:45. I will take that and perhaps even offer up what looks like a partial smile because of the extra sleep.

Today I experienced a frightening moment while teaching math. I was up at the board and suddenly couldn't figure out what we were doing. I was standing there and literally saying to the other adult in the room, "I'm lost in this problem. I'm not sure what I'm doing."

The kids are trying to say stuff and my mind is tuned to off. I have no idea what I am doing or how to finish the problem. I'm looking like an idiot and looking at the board and trying to figure out what the hell I am supposed to do.

Rather frightening. Panicky. How do you even get the point across that you are in danger and truly need help? I was trying to shoot up the flare and wave the flag but no one really knew what I meant.

Eventually it came back to me, and as flustered as I was, I kept on going.

But Jesus, Mary and Joseph, how do you not let that roll around in your head for a while? I felt panicky the rest of the day. I ate lunch in my room, feeling stressed again.

I know I misspeak and I did so yesterday when I was actually alone in the room and I have no idea what I said. I just know that I wasn't being funny and there was a point where many kiddos just started laughing loudly at me. That didn't feel good at all. I just hope there were no cuss words involved.

So I'm praying on the way to and from work and at bedtime, asking St. Jude to help me out. I'm doggy paddling and my face seems to keep dropping below the surface of the pool. The thing is I know I am a great swimmer. I love swimming. I have been swimming for years and years.

Now it just seems like my arms and legs are flailing about and I can't get into any rhythm. It is scary to me because I am getting more and more overwhelmed with work. I feel like everything is so much of a struggle. It isn't getting better or easier.

I'm thinking of a nap here in a few minutes so I can stay up past 8 to watch Survivor. It's one of my favorite shows and I never watch anything on TV from 8-9 p.m. That is being in my bed, on the verge of lapsing into a med-induced coma time.

Happy birthday to me.

PS: On the Tysabri front, the neuro's office called yesterday because for some reason the lab couldn't test for the JC virus when I gave blood last week. It has to be done again. I don't live near their little lab so I called back and asked if they could mail me the lab slip so I could go to the local hospital.

Someone was supposed to call back today and let me know about the whole shebang but they didn't. I am hoping that the slip will come in the mail on Friday or Saturday. Obviously, this means no Tysabri next week because the infusion center is open for Ty patients on M-W only.

Sigh, so it goes.

Tuesday, September 23, 2008

I survived

I went to work and even stayed after with a bunch of kids. The ones who need the most help are the ones least interested in their work. Go figure!

Then I found out I have to go to some stupid workshop on curriculum mapping with my grade level on Friday so that's another day out of the room. It's my birthday and I have to go listen to the "mapping guru" herself, Heidi Hayes Jacobs. Big whoopdeedoo.

I still have no interest in mapping my curriculum.

My fever is still here, ran about 100.6 in the morning and I felt hot most of the day. I survived it though. My one day after school is done and now parents can help their own children and look to see if the work is actually done.

You birthed 'em so please help raise them. I can only do so much and when it comes down to my health versus your child's lack of doing their work or caring, I am going to choose me. Sorry about that but sometimes selfish is good.

I also turned to prayer last night and I prayed some more prayers on the way to work. Maybe that was helpful. It can't hurt.

Wishing the rest of you well,
Wobbly Weebs

Monday, September 22, 2008

Day off

Today I took the day off. I'm miserable and stressed and I have a fever of 101 degrees. It started last night making my usual low-grade fevers step it up a bit.

I noticed again, which is also typical, that as I was writing sentences on the board for my students this morning that I can no longer write a whole sentence without having to put my arm down to rest in between the words. My right arm has been weakening steadily for a while now.

Trying to get showered and wash my hair is difficult. Then drying my short hair and going to use my curling brush is another Olympic achievement. And my hair is pretty short.

Part of my funk is MS, part of it is most likely due to this spike in my temperature, and part is depression and work stress.

**Also, as a complete aside David Blaine and his Dive of Death is nuts. Why would you want to hang upside down way above the ground with no net for three days? What an idiot. Here's a healthy man just begging his body to work too hard and not kill him so he can be on TV again.

David, come live in an MS body for three days while teaching a room full of students with various needs, including students who are about four years behind grade level. Try to walk when you're always dizzy and frazzled and physically exhausted. Throw in some vision issues and/or walking issues and/or cognitive issues and make it all work. Make it look easy with seamless transitions and a sunny disposition. Put that on TV so people can see a real adventure.

Sunday, September 21, 2008

The people pleaser who continues to lose herself

I am a person who attempts to please, or sometimes appease, others. I've been this way for years. I don't want to put anybody out or make them cross with me, so I suck it up and try and do what others want.

It's exhausting.

I find that I still do this at work. I've agreed, because no one else seems to have done so, to allow another person to come and work in my room. There are already two people that work in the room for some of my day and now I am supposed to add in a third. It's making me feel crazy and I know it shouldn't but I don't want anyone else in the room.

I want things to be like they used to be when I didn't teach inclusion and I knew the damn rules. Now I feel like I am supposed to teach something I know nothing about. I'm trying to learn but I am way behind the curve here.

I don't want to have to tell another adult what to do with my students. I don't want to be responsible for anyone else over the age of 12. I can barely take care of myself at this moment.

I want to be left alone to do my job and not have to worry about how anyone else is perceiving me. I don't want to have to think out directions for another person or two people or more. It's all I can do to try and figure out what I am going to do. Not to mention that there is some sort of change in "how we do things" every flipping week now.

It seems like these extra people would be a help for me, and they are in their own ways, but I feel even more strongly that I have to be "on" now. I have to shine every minute of the day because there are other people in the room witnessing what I am doing. I feel like the more people there are, the smaller I become as a human being. I feel as if they are taking away my oxygen.

Every single person at the grade level feels the same way about the constant changes. They also have their own issues with families and other pressures. But, here I am trying to write a flipping sentence on the board and I can't remember what I am writing from the beginning of the sentence to the end.

I spent a good ten minutes earlier sobbing my eyes out in anticipation of another week floating on this ship of fools. The boat has a hole and someone is telling me to row but no one can tell me in which direction. I have one oar and it's stormy weather.

I desperately need things to change soon.

PS: I also had to call the fire department this morning to deal with an early morning issue that the on-site manager refused to deal with. I am so tired of trying to be the responsible person. I don't want people to say how wonderful I am at handling all these problems.

I'm not wonderful; I'm drowning.

Saturday, September 20, 2008

It's half over

The weekend is now almost half over. I feel the dread creeping in as the new week approaches. We're three weeks in to a new school year and it's getting harder instead of easier. Teaching wasn't always like this. There were years when I loved it and the beginning years were definitely tough but this is different.

Completely different. No matter how much I work at school I'm not even close to being done with everything. I bring it home and try to do more but that barely gets done. Then the cycle starts again.

It's beyond frustrating. I feel cranky and miserable and there are times when I just sit and cry and all this while being on an antidepressant and an anti-anxiety medication. I just had my AD dosage doubled before school started.

There is also something wrong with my right foot. I believe it to be plantar fasciitis which creates pain in your heel when you stand on it. It's been three weeks now and it isn't any better. I stretch it a lot but it doesn't seem to be helping any.

The pain in my foot has now created pain in my right hip. I walk differently because of the pain in my foot and every time I stand up and move, I feel it. My right hip bothers me all the time now after I get up from sitting and start to walk.

Getting out of bed in the morning is excruciating, both physically and mentally. I'm even getting a new "alarm" clock to try to help remedy this issue. I ordered the Moonbeam clock from L.L. Bean to try to make waking up in the morning a little less harsh. Instead of the shrieking noise it's supposed to wake you up gently as light slowly illuminates the room. There's also some sort of bell that is the backup to the light. Obviously, I will be testing this out on the weekend once I get it.

I hate the screeching pitch of the current stupid clock which is across the room. Then I have to try and catapult myself out of bed to turn it off. It's always a jarring annoyance to wake up and hobble over to the clock. I'm immediately reminded that it's another day of work/frustration and that I'm still in pain.

It looks like I may need to call my primary care doctor to have the hip and foot pain checked out. His office is about 45 minutes away from where I work and live so that means more time after work that I will not be working at home because I need to drive there, see the doc, and drive home. That puts me even further behind.

Do other people feel this way? My multiple sclerosis is not something you can really see. Yeah, I walk slower than anyone else in the building but my brain is overwhelmed constantly. I hate the feeling that resides in the pit of my rather large stomach because of this constant fear of Sunday and then Monday and the repeating cycle.

I need Tysabri to work some magic for me. I hope that it will help me in so many ways because if it doesn't I don't know how I will ever get to June in one sane, solid piece. Losing myself completely just isn't something I'm willing to do for the sake of other people's children.

I will do my best and I'm not giving up but I am also not staying after school every night with your child. I will stay one night a week and the special education teacher will stay another night. That's all I can give for now. I'm already there early and trying my best to remember what I started to write on the board just ten seconds ago.

I get lost in the sentences when I'm writing on the board. I get lost with my words and my thoughts when speaking. I got up to go close the door to my room on Friday and I closed the kids' closet door instead. Then I realize what I did (or didn't do) a minute later and got up to close the correct door.

I know we all forget things as we move around, from one room to another. I just do it hundreds of times a day. The paperwork that comes with teaching is astounding. I spend so much time touching, moving, passing out, collecting, and looking for papers. Kids lose their papers or turn them in late or I move the worksheets and I just want to scream.

I can't even cook anything in my apartment without using a timer that I have to carry with me because even though I may be fifty feet away from the kitchen I will forget what I am doing. I heat things up in the microwave and leave them there for an hour.

This week I noticed that I am forgetting phone numbers of people, people like my best friend who I talked to daily all summer. Now I start punching in numbers and then stop and stare at the phone. Then I hang up. Try again, but no more numbers come. Hang up. Repeat. Then I usually just put the phone back in its cradle and leave it.

This makes me mad and frustrated and stupid. Does anyone else with MS feel the same way?

Thursday, September 18, 2008

I'm off to see the parents ...

Not my parents of course, but the families of those kiddos I try to educate. I'm home to eat, feed the wonder feline, clean up, and change clothes. Then it's back in the car to my "home away from home".

I was having a lousy day and ate lunch in my room to just have some "me" time. Then the special education teacher gave me a nice compliment about my students knowing this week's story for the big test tomorrow.

Remember those reading books you had when you were a kid? They had lots of stories and you had a workbook? Yep, we still use them. Except that I have no workbooks. Apparently the order form from May's order was misplaced and so was the late August order form! Imagine that, people being disorganized in a school district. I bet that never happens anywhere else.

(Pretend I'm holding back a chortle there.)

Work tonight and then tomorrow and then the bliss of the weekend.

** The neuro's office called for some information today for the Tysabri people. The wheels are turning and the nurse told me their Ty patients love the infusion facility and the doctor there! Yippee, even more good news.

Wednesday, September 17, 2008

Less frustration and restrained elation

Okay, school was slightly less frustrating today because someone discovered that maybe "some" of what we were doing didn't make sense in ELA. Which means that tomorrow morning during our planning period we get to have another meeting to talk about why it doesn't work. Then we can all go back to our classrooms afterward, frustrated yet again because we don't have the answer but thanks for using up 42 minutes of my work time, which I desperately need to use to correct papers and do my actual job.

By the way, no other grade levels in the whole building have to have this meeting. Just my grade. Everyone else can actually use their planning time to work.

Oh, and it's Open House night which means not only do I get to work, have less time to do my actual job while feeling bitter and frustrated more than normal, but I also get to come in and work from 6-8 p.m. I arrive at work about 6:45 a.m. so this presents itself as a rather long day, regardless of MS.

I know Open House is important but couldn't it be shorter?

Or couldn't it be later in the year instead of rightnow (yes, I meant to type those words together!) when we still can't get our act together in the fifth-grade department? I swear there have not been more than three days consecutively where we actually followed a real schedule, uninterrupted with new changes.

Everyone at the grade level is frustrated and I know that tomorrow's meeting will continue that frustration. Don't people know that they need to trouble shoot this kind of stuff before school is actually in session?

Big sigh...

On to the good stuff now.

I met the new P.A. who reminds me of my brother because they have both have had cleft lip repair done. (There is a slight scar if you know what you're looking at.) That has now made my mind think of this man as M. instead of J., which he rightly is according to his name tag. He's got an unusual sense of humor but he listened and showed me my MRI spots and we talked about how my O-bands were ridiculously high (like 1,000) and how he's surprised there aren't more lesions. (Yes, that was a run-on sentence, so sue me. I'm not worth much.)

We talked about the failure of Copaxone and how I honestly gave it a "good" try of almost 2 years. Then we talked about how Rebif hasn't worked for me and how I would like to head to Tysabri Land.

He hemmed, he hawed (hee haw, I'm flipping hysterical, huh?) and we looked some more at the MRIs and talked some more.

And then the moment arrived when he acquiesced and said, "Yes, you may have the liquid gold."

I'm getting Tysabri, yippee! I had my blood work done today to check for the JC virus and to see my current liver numbers. I've been off Rebif for more than a month so all I need now is the infusion center guy and the insurance people to get everything all ironed out.

I just need to sit back and wait for the call about an appointment and costs. This is a relief for me as this neuro's office has an excellent reputation, they are open five days a week, and there is a whole process for how the doctor gets the messages from patients electronically on his computer and he calls them himself after office hours. The doctor actually said that he will not allow any lax office people and that customer service is important to him.

This might be some sort of neurology-Utopia here.

That's great but I still wish we didn't have the damn meeting tomorrow.

Tuesday, September 16, 2008

Tomorrow: Definite frustration and possible elation

Tomorrow, Wednesday, is the appointment with the new neurologist. That's what I am hoping will be the elation part of my day. I've picked up all my MRI films from the local hospital and found my old disk to pack up in my health binder. The paperwork is filled out and my questions, symptoms and meds sheet is all typed up and ready to go.

Prior to that appointment is another day at work. I am feeling more and more frustrated each day I walk in the door. We have less time to teach in the day, thanks to a new and "improved" schedule, and more things to teach in that time.

I have a 72 minute block for English Language Arts. Now take some time off the end of that because we need to switch for math classes. Within this 72 minutes, which is really more like 68 minutes, I am supposed to be teaching this subject for 90 minutes uninterrupted.

Okay, I am no fifth-grader on that Jeff Foxworthy show but the minutes just don't add up. You can't do 90 within 68. It doesn't work.

Now let me add in 5 inclusion students who get pulled out for part of that time and every other day I have 1 or 2 students also leaving to go somewhere else for other E.L.A. instruction. The pull-outs are supposed to be in addition to my 68 minutes but obviously, they're not. If the kid isn't in the room they can't be there for my part of the instruction.

The children who leave are supposed to receive instruction at "their" level, which can be anywhere from a 1st to a 2nd grade level. That's great but the rest of the time the textbooks and worksheets and everything else we use and read is geared to our fifth grade level.

We don't want to frustrate the children but they must be frustrated because they can't read what we're doing. That's so damn handy, I can't stand it. (Yes, that was sarcasm!)

I am frustrated because we do this every day. Someone or many someones leave the room and do something that I am not doing. They get tested on what I am doing. Does anyone else see the insanity of all this?

I'm supposed to keep on going throughout the day when, let's say, 7 or 8 students in my class cannot read the materials in front of them. I'm frustrated, they're frustrated. There must be a better and smarter way.

Apparently this is supposed to be "the better and smarter" way but I've got to tell you that someone is trying to make lemonade from acorns here and I'm not drinking this Kool-Aid!

Monday, September 15, 2008

A snow day in September? Nah, a day off thanks to Ike

It's terrible all this destruction that Ike has brought forth to some areas of this country. I live far away from Texas (which is NOT the largest state in the US, by the way) and I call my home very near one of the Great Lakes (Ontario).

I have the day off today thanks to Ike.

In typical manly fashion he came in late at night, knocking things about and being rather noisy. He woke me up several times whilst I was trying to sleep because one of us had to go educate America's youth in the morning.

Upon awaking this morning with typical MS dizziness and exhaustion, I slowly made my way downstairs to feed the feline. The local news showed some schools with delays due to power outages and debris thrashed around due to Ike. My school wasn't on the list of delays so I went to shower off yesterday's disgusting and sweaty residue of a 90 degree day with horrid humidity in September.

After losing my balance about four times in the shower thanks to shampooing and loofahing, I made it to the towel zone where I dried off carefully. Then I placed my glasses on and hurried myself out to check the TV again.

Bingo, we were now on the list for a two-hour delay!

The excitement and spontaneous prayers that ensued were heartfelt. I promised I would not go back to sleep and I didn't. Instead, I threw in a load of laundry and started correcting the numerous homework papers that had been sitting in my school satchel all weekend. I even put in a call to my best friend in Maine to alert her to my good fortune. She didn't answer so I left a lengthy and happy message relaying my good luck.

After hanging up the phone, I looked at the TV again and, gather yourself here, I noticed that my school was now CLOSED!

You would have thought the Prize Patrol had pulled up outside my apartment door with flowers, balloons, and the giant check. My happiness grew exponentially and I called my friend again to leave her a second message to say that I was now free from students for the day.

I have, however, done lots of school work and most of the pile of papers have grades on them. I have made a few phone calls and the laundry is dry, folded, and put away. I am heading in for a nap soon and I can really use it after listening to the winds howl at 50 miles per hour from two in the morning onward. I also have some paperwork that must be done before my new neurologist appointment on Wednesday afternoon.

I may not like the destruction that hurricanes bring but this is one time where I can say, "I like Ike (because he got me a day off)."

Saturday, September 13, 2008

The power of the (um) pen ....

When I was in middle and high school I kept journals in spiral notebooks. I filled them with lots of poetry, mostly angst-ridden and hostile stuff, lists of my imperfections according to others, and letters to people explaining why I did what I had planned to do.

I still have some of those notebooks. When I open their yellowed pages it's painful to relive those memories. There's that saying about time being a great healer but I'm not so sure about that.

Certain moments you take, burrow down deep, and try to keep buried. I don't know if you ever really forget those times when you were hurt so viciously and purposely by people close to you. You may not dwell on them daily but those memories still exist.

Writing what I do is part of the freeing element of those younger years when I was all wrong. Then, I had to keep my writing hidden under the bottom drawer of my desk.

Now, I write freely at a venue that anyone could stumble across, if they knew where to look. It's dangerous to be so open when at any time those parental figures could find and read this. I'd love to be able to say to my parents that I write this thing called a blog, people read it, and some of them even enjoy it and look forward to my new posts.

I'd love to say that to them, but I won't.

The reality is that they wouldn't read this because they think this writing of mine is silly, frivolous, and stupid. They travel the world wide web only to snare information about Las Vegas, Iraq, and my siblings. They wouldn't dare search for anything that has to do with multiple sclerosis or with me.

Maybe that's okay. You can't change people or the past.

I can expose my messy stuff to the light of computer monitors. I can write and not hide it, even though I don't post my real name (or my picture anymore). I still have journals which I hope no one reads because I was fairly wild for years after I left my wasband and waited for my divorce to be final (and for several years after that).

I have a personality that is somewhat bent on self-destruction. Growing up in their atmosphere led to the belief that I had to find a way to disappear.

Years later I can now see that I don't have to cease to exist because someone else isn't happy with me. I can just pick up a pen or type away on a keyboard and let myself come pouring out. I don't have to hurt myself or change myself because I'm all wrong.

I may not be perfect, and there are parts of me that I want to change, but I am not all wrong. I'm just not anymore.

Friday, September 12, 2008

A little bit of this and that and the gift of blogs

This is a quickie because it's Friday night and I am doing NO school work until sometime tomorrow afternoon. I am also on the cusp of experiencing the thrill of sleeping past 5 a.m. and not using my alarm clock. For two whole days, mind you. (It's the best bit of crazy I can do with no man, no booze, no illegal drugs and such, along with MS.)

I had a great shrink appointment today. A good shrink is worth his or her weight in gold. I seem to finally be coming out of my deep, dark, filthy, black hole of depression life. I like to believe that all my morning meds are starting to peak and work at their optimum ability and the upping of my anti-depressant a few weeks back is really making me not want to harm myself.

I have been down that road, starting at a very young age. I recall crushing, smothering, painful depression when I was a fifth-grader.

Numerous suicide attempts when I was younger, scars both invisible and visible if you know where to look. A family that told me that my view of the world was wrong, that my feelings were wrong, that my experiences were as they told me, not as I recalled living them.

I learned at an early age to become withdrawn and to isolate myself in safe places like books or my few friends' homes. I loved to read, loved to ride my little yellow banana-seat bike to the public library of my tiny village. Books never hurt me, made fun of me, chastised me, placed me in a hole where I didn't fit. Books were provided trips to places and families I couldn't be a part of, gave me an escape to a land where I wasn't fat, or ugly, or in the way.

That is probably why I so enjoy the opportunity to write now. It's as if a forbidden fruit has finally been plucked and savored! How long have I stared at the tree, watching, hoping that the fruit would fall to the ground and I could swoop it up and carry it off secretly?

The answer is that I waited far too long.

I'm a prosey writer, too many words, too much of too many things, but there has been so much hidden away for years and now I am free. The words are like blood or oxygen, nourishing my soul and my body. It's like breathing deeply for the first time on a spectacular autumn day with your face turned up to the sun's rays, kicking up bundles of brilliant leaves with their yellow, orange, red, and brown.

Writing what I have these weeks, as openly and honestly as I have is my gift to myself. It is what I saw, what I lived, how I live now.

We all have our stories to tell, that's what makes so many blogs fascinating. If you write one, read one or both, my hat is off to you. It means that you also have found the gift of words and you bloggers, you choose to share it with both people who know you and others who are complete strangers.

I suspect if the people I worked with read this blog all the time they would view me differently. I have so much submerged that is never mentioned that there is no doubt that they would be surprised. I'm the iceberg in the teachers' room.

Global warming may be starting to thaw me but I'm okay with that. I'm just so happy that I have found my words again. Thank you for reading.

Thursday, September 11, 2008

Today I cried (and it has nothing to do with PMS)

I find myself having these emotional swings that sometimes come out of nowhere. I guess part of it is the frustration of having MS and part can be attributed to the difficulties of just teaching.

Today I was saddened when I thought of the anniversary of 9/11 and we observed a moment of silence at work. I explained why we were silent because my students are so young that they were babies in 2001 and don't have those ugly, vivid, raw images embedded into their brains.

So we talked about the towers, and the Pentagon, and the airplane in Pennsylvania. And then I had a little boy raise his hand and tell me that they had recently found remains of his aunt who had worked in one of the towers.

None of the other students really understood what this meant but I did.

I was home sick from school September 11th, 2001, with the TV off. I heard about what was happening in an IM from a cyber friend. I turned on the TV and didn't turn it off for days, it seemed like. This was probably the most profound moment of our nation's history that I really experienced. I recall the Challenger explosion and I was a fifth-grader myself when President Reagan was shot.

But September 11th is different. I guess it was the first time when I felt that as a country we were truly vulnerable. We didn't know what would or could happen next. It was beyond inconceivable.

I had a friend at that time who lived in Manhattan; he was a freelance writer who traveled the world writing articles. His name was Chris. Immediately, I tried to get him on his cell phone but the lines were either down or overloaded.

I tried calling him several times over the next few days and I was finally able to leave him a message a few days later. When he called me back, I will never forget the haunted quality in his voice. He had been spending his time with his best friend, going from hospital to hospital searching for his best friend's wife who had worked in one of the towers.

Eventually they discovered that she was nowhere to be found. She was not a survivor, she wasn't wounded, she was just gone. Ashes somewhere floating around in the haze of chemicals. She had two children, daughters, and I remember Chris telling me that they didn't know how to tell the girls about their mother.

I cannot imagine the sheer terror of people living and working in that area.

That was the last time Chris and I ever talked. I think that his life outside of Manhattan ceased to exist because he was in the midst of hell on earth, an organized chaos of people trying to help and people searching for loved ones.

I cried today because we were also talking about issues in the upcoming Presidential election. One of the topics we discussed was the Iraq war. The US did not enter into the Iraq war because of 9/11 but many people forget that. I digress, the discussion turned to people in our families serving in the military.

I have two siblings serving in Iraq now, a brother and a sister, both younger than me. My sister has been there since last October and my brother since April. I have not heard either one's voice since they have been gone. I rarely get emails from my sister. I never hear anything from my brother.

Until today.

It may not have been an email with all capital letters at the beginning of every sentence and there may be a few grammatical mistakes. But this email was very special, not even because of the things that he said.

It was just the mere fact that he sent it.

I've emailed him a few lengthy emails, sent a card or two, and a package and I never heard anything. And I will admit that the silence hurt me; maybe part of me was and is selfish for wanting some sort of response when he is in the midst of a war. Even my sister will drop me a line every few weeks or so.

But as I type this I begin to cry again, the big, wet, ugly tears. The ones where your nose runs and your cheeks get all blotchy. The kind that need lots of Kleenex.

In his email he talks of being busy and having more responsibility and going out on more and more missions. He says he feels overwhelmed at times with all the responsibility, even though he's glad they think so highly of him. He asks how I am feeling and mentions that he knows I have not been doing well. He talks of school and asks about my class.

He writes, "I hope that no matter how bad you feel that you can keep teaching because i (sic) know that you love being with those kids, most of the time."

Most of you don't know my brother and those of you that do know him, know that we haven't always been the most loving of siblings. I would never wish harm on him or my sister. But (and I am using that word way too much, I know; I'm sorry) for him to type that means he has listened when I have talked about school and he has read what I have written to him in the past.

Sometimes it's just nice to know that someone you love does actually love you back. I know he does by what he emailed me today and the very fact that he even said so, he used the word love in this message to me.

So tonight I cry for those who were lost in 9/11 in both body and spirit.

I pray for all of our volunteer military, whatever branch and wherever they are located. And I cry because even though I am the oldest, you are never too old to hear that your younger brother loves you.

Wednesday, September 10, 2008

Allow me to be silly

I love my public and my fab comments I received about my widget counter birthday on yesterday's post. Widget counter's birthday is TODAY and he received a smattering of special gifts. He got a pet rock and a new book filled with quotes about serenity and zen. I also allowed him to take a few hours off and circle around the world wide web.

I have papers from the new neurologist already. They came in the mail today. Yippee, yippee, yippee.

Pleeeeeeease power that be from above, allow this doctor to be "the one". I don't need love; I need a really decent doctor who listens to me and will treat me like I am a real patient instead of an intrusion in someone else's four-day work week.

That's all I've got tonight but I do want to send out some good health vibes and feel not like dung vibes to everyone who needs them. Right now I can still smile and that is something that has been missing from my life for a long, long time.

Tuesday, September 9, 2008

Tomorrow is my widget counter birthday AND I may have some good news

Tomorrow is the official one month birthday mark of my little widget counter at the bottom of the page. Now I know blogging isn't about how many people read your stuff but I must admit that I am always bedazzled that anyone reads this drivel at all. And someone does because I only have about two friends who read this regularly and we've already established my family's view on my writing (stupid, waste of time, never get you anywhere) so we know they aren't reading this either.

So my deepest and most divine thank you's from the bottom of my wizened old heart to each and every cyber angel that comes to visit and then gets their cyber-wings at last! (In case that made no sense, that was a reference to a famous Christmas movie whose title is on the tip of my MS tongue, just out of reach.)

And shhhh... I'm gonna tell you a secret. Lean in close. Closer. Look around and make sure no one else is watching you.

(** Super sensitive secret material** I have procured an appointment with a new neurologist of my choice who offers Tysabri more than one day a month. I actually talked to their office today and they are sending me a bundle of paperwork to do in advance of my appointment with them next week!!!!! They also asked me to bring any films or discs of my MRIs with me so that the neurologist could look at them.

OMG! A doctor who looks at these super ridiculous pricey MRI materials instead of just reading the radiologist's report, can you believe that? And, get this, the office lady said I could see the P.A. or alternate between the the P.A. and the neuro, or thisisflippingunbelievable here, I could just see the neuro.

I am dancing and humming Christmas carols, my friends. With a smile on my face. Nothing is stopping this Flashdance moment. I feel on top of the highest mountain looking around and finally seeing some sunshine.

Free at last, free at last, I will be rid of Neuro #4 soon enough and that, dear readers, has brought me to the mountain top.

Monday, September 8, 2008

It's Monday, I went to work, it's over, now repeat

So it begins. Monday rolls around, alarm going off shortly after 5 a.m. and I start the routine. Feed feline, get clean, attempt to style hair, hope that I remember to take my meds, pack up my bags and try to get the door open.

By the way, it's always bags, never just a purse or one bag. Today I had a purse, a lunch pail, a school bag, and another bag to carry other stuff in.

I live downstairs by the way, so it's a balancing act trying to get my large, unsteady body up the two flights of stairs with all the bags. Then I have to open the door of the apartment building and go down a set of stairs to get to the ground level. Half the time I am locking the car doors with great fervor instead of unlocking them because I can't see because of all the damn bags.

Today I limped around at work because my right foot and hip are giving me some special gifts of their own. I tend to stand almost the entire time I am teaching, whether at the board, or lecturing, or moving to work with students around the room. Directions for me are to sit as much as possible but when the kiddos are there that doesn't happen. My students know I have MS but part of teaching is that almost constant movement here, there, and everywhere. Of course, amongst all the movement I carry papers or books or other important things and then put them down and lose them. I spend a lot of time looking for things I just had in my hand.

Summer vacation was great in that there is no money but also no work that has to be done. This year I could not tolerate the heat at all so that made it tough to actually enjoy most of the vacation. The last few years haven't been that bad but this year was a doozy with my bod and the heat. I was constantly miserable and suffered some pretty awful leg spasms and dizziness. I traveled nowhere and barely left my apartment because I needed to be rightnexttothefan; yes, really that close! It is still in the 70s now and I'm still uncomfortable with the heat.

Most days I am in the school building for 9 hours which shatters most people's idea of a teacher's work day. I also bring stuff home every single night and every single weekend. There is always more to do and when you think you are done, you just start pushing the giant boulder back up the steep hill. Yippee, what fun.

This is the fourth day back with kids for me. I hope God really is riding shotgun because I am going to need some major help to get me through this.

**As part of my Tysabri not-call-a-thon to everyone under the sun news, I must let you know that the hospital infusion center that was SURE they were going to start working with my doctor didn't call me back. The hospital was going to call first thing this morning to find out and then leave me a message.

No one did, imagine that.....

Sunday, September 7, 2008

More random bits (Doesn't that make me sound a tad English?)

1.) My typing is getting worse and worse and so is my inability to catch errors when I try to proof my writing later on. How flipping embarrassing is that? I can spell well and type fairly decently but it's getting more noticeable to me because I do this all the time and use it for the teaching craft. What's worse is when it is highlighted in yellow because the program thinks it looks wrong and I still bypass it. Duh!!!

2.) Up on top is an image of Hoops and Yoyo and some other blue thingie that sometimes appears with them on their cards and other merchandise. If you are having a day where you feel like you're a broken bridge under troubled water or you feel like absolute crap in the universe, get thee to visit Hoops and Yoyo. They have cards all over the place, but especially at Hallmark, who came up with the idea for the gem that these two are. The cards are hysterically funny with these little tiny voices that say things that just make you laugh!

Go to the store and open up all of these, or buy yourself a card because you deserve it dang it, or check out their website http://www.hoopsandyoyo.com/ and check out the cards there. I am in love with H and Y and they always make me laugh. Recently, I received one of these cards in the mail as a really early Happy Birthday card which is really masquerading as an "I know you're super depressed and hate most of life right now, but maybe this will make you smile card".

My card does make me smile. I just listened to it two times while typing this and laughed a booming loud laugh that felt good. I also listened to it a few times on Friday at school when the kiddos were gone and I needed some relief. I heart Hoops and Yoyo.

3.) Open House at work for me is ALWAYS the same night as the first night of Survivor. I think this is a conspiracy and I don't like it one bit. I've been tracking this for several years now and I really think we should just ban Open House until maybe the second month of school so I can watch one of the few shows I enjoy that is on until 9 p.m.

(As another random aside, I am generally in bed around 8 most nights, exhausted, hooked up to my CPAP for sleep apnea, with the fan or A/C on high, and my arm splints on. It's a really beautiful sight; can't you picture it now?)

4.) I wish school was 4 days a week, two days on with Monday and Tuesday, then Wednesday off so you can get those things done like the bank and the doctor and dentist and such, and then back at it for Thursday and Friday. I really do think my attitude would be a smidgen better if I could sleep in for three days like that.

Now I roll in to my coma around 8ish with all my paraphernalia on and then I am up at 2 or 3 for an hour to 90 minutes (for no real reason). I do some school work and maybe fall back asleep around 4 or so and then I'm up shortly after 5 to soldier onward in the field of 5th grade academia.

Oh, and by the way Mr. Jeff Foxworthy (of Are You Smarter Than a Fifth Grader? fame), some of those questions on your show are so not what a typical 5th grader is being taught let alone actually remembering. They had a question on the the other day about who was the youngest President ever. And no, it's not JFK. On a technicality, he was the youngest elected President but someone else was one year younger because that current President died in office so this other gentleman was the correct answer.

Now I am not telling you who the correct answer is because a.) if you really want to know you can find it out easily online and b.) I've forgotten who it was for certain so I can save face this way! My students, after a whole school year, still need to be reminded where Hawaii and Alaska are and I still have to tell them they are states that belong to the country called the United States which is part of North America which is located in the Western Hemisphere.

Those kids aren't human, methinks. Some crazy sort of tiny academic cloning going on with this show. Not to mention that these kids generally spell the answers correctly and capitalize when needed. Are you kidding me, Mr. Foxworthy? I am so on to you, buddy!

5.) I am a procrastinator. I need to begin working on school stuff, like plans for the week and all.

6.) Depression and MS both still suck. A LOT!

Saturday, September 6, 2008

Random bits

First off, it's the weekend so don't expect much, ergo the random bits title for today's post.

1.) I have changed my "photo" to a more accurate representation of what I look like and to revive the weeble idea of the 70s. It's also a nice way of staying somewhat incognito from any powerful and influential persons that may stumble across this blog or a random family member who would cuss me out and let me know that I am still one of the lowest forms of life on the planet.

2.) I am letting the Tysabri wheel whirl ever onward or fall flat to the ground, as it may. I am taking a Ty phone call-a-thon rest for several days. People can just call me if there is to be any progress. No calls means less money I'm spending on future infusions, right?

3.) I'm going to look a little more deeply into the HiCy process available at Johns Hopkins. It's pricey but I hear that some insurances will pay most of the price. I've heard a price tag of about 30 grand or so but you also have to travel there a few times and pay to stay close by during treatment.

4.) I'm also looking into bariatric surgery = surgery for really fat people to get their digestive tract altered so they can malabsorb food and lose large amounts of weight. I am fat, disgustingly fat, life-alteringly fat and I am certain that it makes the MS even more of a burden for me. Plus, I am so tired of feeling unhappy in my skin with the mirror check. I don't want to be 110 pounds again but I need to be way below where I am now for health reasons, not just vanity.

5.) If you're a person with MS (and even if you're not), please check out some of the blogs listed on the right. It seems like I run across at least one new blog a week. It amazes me how I won't read posts for several days, then I'll write my own post, and peruse blogs later to see that someone else has written about the same thing I have. Spooky.

6.) Depression sucks. MS sucks.

Friday, September 5, 2008

Survival and other bitching

Survival is about making it through this first week back at school. I'm wiped out physically and mentally at this moment. Another blogger who teaches has recently typed about this. Teaching can be both wonderful and life-sucking at the same time. This is my twelfth year teaching and the new monkey wrench this year is the addition of inclusion students, some of which have some pretty impressive emotional issues and they are so far below grade level (some up to 4 years) that I am trying to figure out how to make this work.

Then my darling parents arrive home from a week of gambling elsewhere in the state. The first thing I hear is that my dad, not my bio-dad, didn't take a certain medicine all week long and then almost had to be hospitalized at the last moment on Thursday evening. This was something totally and completely avoidable if he had just taken his medicine daily as instructed. I take my damn medicine and I still feel like crap; he doesn't know how lucky he is.

I tried to explain the whole Tysabri mess and I can sense my mother isn't really interested in this phone conversation. Anything that has to do with me is generally disinteresting to most of my family. Gee, mom thanks for expressing support for me as I tell you how frustrating it is trying to obtain Tysabri while I try to just freaking stay awake and do my job.

Then she asks about some friends of mine that I had hoped to meet up with in November. That isn't going to happen and I know it, even if it hasn't been expressed aloud. It was something I was looking forward to but I just can't worry about two other people trying to make it work within the confines of my work schedule. My best friend is always too busy and I know it just won't happen because her life is pretty much all work and she doesn't have MS.

Next mom's on to finding out if the apartment with no stairs is available or not in November or December. I don't know the answer yet as I've been spending hours calling medical providers and such trying to get Tysabri and then also just doing that thing called work.

Then we hit the hot button topic of my future sister-in-law. My brother who is 29 was home on leave in February for two weeks. He got engaged at that time to a female he met while he was enjoying his drunken stupor and had "known" for one week.

My parents have gone crazy for this little nose-pierced, two-toned hair 24 year old. I'm sure she has some good qualities but I am tired of hearing all about their November wedding that has all the things a girl could want and more.

When I went to get married after college, my parents hated my future beloved, paid for none of our wedding, openly insulted my future husband to anyone in sight, and disowned me for a period of time. My mother refused to attend my wedding shower and later gave me a pink bowl with feathers on the side of it as my gift. My wedding gift was equally thoughtless, a hand-made looking type of pitcher. Yes, well thought out and especially chosen for me.

I have spent my whole life being the black sheep in this family of three children. It's a title I can't lose and don't deserve, yet it clings to me.

I wanted to get some copies of pictures of my brother last weekend from my parents. He sent home lots of pics that my future S-I-L had put on a disk and printed out. I called my parents and asked if I could come over on the weekend, look at the pics, and pick some to get copies made of for myself. My parents invited my future S-I-L over and I decided not to attend the lovefest that is all about my parents, my brother, and his beloved.

Being in the same room with her makes it harder for me.

My parents love, love, love this girl, this girl with no real skills, except to make pictures at Sam's Club. I love how my brother and his special woman can do no wrong while I can do no right.

When the four of us are together (parents, her and me) I tend to disappear. It becomes all about her and my brother and my parents. No one asks me questions, she sits at the table where I normally do, and she's getting a wedding with complete support from my family and I must hear every detail.

I'm envious as hell and pissed off that she gets attention that I can never get. I'm so tired of being last in my family and having no real sense of support. My mother is a nurse but she allows me to just fall down over and over as she struts on by. I ask myself, even now at 37, why I'm not good enough still.

I am working so hard with school and it is sucking the energy out of me. There is nothing left after the day ends as I come home and do more work. I want to relax and feel decent and have some sort of fun and that doesn't happen. I am sick of having MS and I am mad at it and frustrated and I feel alone. This sense of being truly alone is even more acute now.

I guess the people who have the ability to love you the most, can deal you the hand that is unplayable. I just don't want to play card games any more.

Thursday, September 4, 2008

I swear I am losing it slowly

Can someone please tell me why this whole Tysabri debacle has to be such a, a, a debacle for crying out loud? Is there really no better way than for me to make several calls every day getting nowhere to try and get this medicine?

Today, there were two messages from infusion centers to return. I find out that one site doesn't have a doctor there and they haven't actually done any Ty infusions. The second person from another site was gone for the day and she "thinks" they are going to start working with Neuro #4's office to take patients.

I cannot even begin to believe that notion because Neuro 4 was adamant that infusions must take place in his almighty holy special super-office. Why would he be sending the big bucks he could be making off us poor infusionees to someone else?

I tried calling his office to check on this and they are gone as it's now the start of their weekend because doesn't every doctor's office only work 4 days a week?

Then infusion call guy number one tells me to call my insurance and maybe my "case manager" can help me. I call them and they know nothing! NOTHING. I have no "case manager". The only thing we manage to do is make me go online and find some neurologists that supposedly take my insurance. There's a list of about 6 people including current neuro 4 and neuro 1 who told me it wasn't MS and to skip merrily into the sunshine and maybe someone else could find something wrong with me in the future. There are neurologists I have seen in the past with the same insurance NOT on the list so I am thinking this list is crap.

I call the TOUCH people back to see if they have somewhere, skillfully hidden on their site, a list of local doctors who are TOUCH-certified. There's no list online but she can read me the list in a whisper and give me the numbers so I can call them and see if they can take me on as a patient, take my insurance and see where they infuse.

I scribble down numbers of people I am not even sure if I wrote the names down correctly. I asked her to speak louder but a loud whisper is louder. I asked her to repeat phone numbers and these neuros are now also all closed for the evening.

I called my PCP guy and left an added message that I am trying to get on Tysabri and the doctor I am looking for a referral to is on the TOUCH list.

Then I hung up the phone and cried hard again today! Big tears, head in my hands, angry at God at the moment type tears. I am so flipping worn out from trying to teach, feeling like dung smudged on the bottom of your shoe from MS, and trying to find someone to get me some Tysabri before December.

I know there are people out there who have it worse than this but I pray that they have someone, at least one someone in their life, be it a spouse, child, or parent that is willing and able to help out when they need it. This whole debacle is making me feel more alone than ever.

Breathe in, then out, repeat....

Tuesday, September 2, 2008

The clusterf # # k that is Tysabri

I came home from work on Tuesday with lots more work to do at home and there was a message from the neuro's office telling me to call back.

So I did.

Thus begins the clusterf##k that is Tysabri. The TOUCH people have informed the neuro's office that I am now disenrolled from their facility and I will be seeing Dr. X at some other location for the infusion. Nowhere was I a party to this discussion or this decision.

The TOUCH people were supposed to be checking out other infusion locations to see their availability, how often and when they infuse time-wise in the day, and price. There were several other choices for them to check out besides my neuro's office and then they were supposed to report back to me what they found.

Instead the TOUCH people just took it upon themselves to change the potential infusion site which now pits me in the middle of neuro #4's office and the TOUCH people. Like I need one more phone battle right now, people!

Is it flipping crazy of me to want to know the price of this medication and the infusion costs and the availability of infusion times before I consent to treatment? Neuro #4's office says the cost is the same no matter where you go but that it also not true, as evidenced by Brain Cheese's recent dealings with Tysabri costs.

I have 11.5 sick days this year and 5 personal days. Is it truly selfish of me to look into another site that may have weekend or (gasp) late evening hours that will accomodate my schedule more easily? This is a once monthly infusion, two hours at the infusion place for medication and med watch, plus I have to travel an hour to and from the location.

My neuro's office only offers the infusion one day a month from 7:30 a.m. until 11:30 a.m. So, if for some reason I am not deemed infusion-worthy that day I have to wait a whole other month. That's not the dosing schedule people.

Not to mention that I KNOW the people in this office are not following the TOUCH protocol. I have read up on this and I'm not some idiot who fell off the pumpkin truck.

So today I came home from work, took a detour to savor a strawberry/black raspberry twist ice cream cone, and then started calling the local infusion sites to check on their hours and availability. Lo and behold, some of these places infuse five days a week. Some of them even infuse late into the evening. I can feel the Earth falling off its axis as I type this.

As an aside, my neurologist only works Monday through Thursday; not that I see him anymore as I am now on the NP's rotation. I'm not real thrilled with her care, or lack thereof, as I spent the entire summer basically suffering and being told to, "Call me back in another week," while she went off to yet another conference. Maybe one of those conferences should be titled "How to Recognize That Your Patient is the Most Important Person in the Room at Each Doctor Visit".

Then I had to ask the infusion sites about which physicians would work with them as I will be leaving my current neurologist as soon as I can get in with a new one that will work with one or more of these places. I don't like being bullied by the neurologist's office to do what they say and infuse there or else I can just get another doctor. Isn't what I need and want important in there somewhere?

Finding a good neurologist must be like climbing Mt. Everest: extremely difficult, depleting your oxygen, and battering you down with various wintry weather conditions.

I also put a call in to my Primary Care Doctor who works super hard for me and with me to get a referral to magic neuro #5. He deserves a big kudos here. Thanks, Dr. Jeff!

And I, my friends, am one of the lucky ones. I have decent insurance, my cognitive abilities are still mostly intact, and I know a lot about what's going on in the MS world. The sad thing is that for many people, most of the MS world revolves around this kind of frustration on top of any other medical issues it may be causing.

This is it...

Today is my first official day being re-employed as a teacher after my summer vacation. No kiddos today but some of them will most likely pop in to say hello with a family member.

Meetings in the morning and an open-book test that we all discuss the answers to which creates the cacophony of voices that make my brain want to turn itself inside out.

I'm up early, dressed, coiffed, and cutting up celery for lunch and gathering other food items for my camouflage lunch container.

There's no turning back now...

Monday, September 1, 2008

Teachers and teaching

I do not, nor will I ever, look anything like the teacher above. First off, I don't know anyone in my building that even uses their chalk board anymore. It's all about the white boards or the SMART boards. Secondly, I am no longer able to wear shoes that have heels. In fact, I hate wearing shoes at all. Thirdly, I am not skinny and if I turned sideways like that I would be a short, squat version of some weird creature that looked like a female Michelin tire woman who swallowed a watermelon whole and was on the cusp of giving birth. (No, I'm not preggers; I'm just really really fat!)
Below is a comment I just posted on another teacher's blog who also happens to have MS. She was posting about why she teaches.
"There are many reasons why we (teachers) teach but the most important one is one you touched on today in your blog post; we care and we are willing to show that caring to our students."

"People who don't teach may not ever understand how difficult it can be for us to reach out and give of ourselves day after day, with rarely any positive comments or reflections from people around us coming our way."

"We teach because there is something inside us, some spark that begs to be lit and carried forth in the hopes that someone, even just one child, will light his or her torch from ours."
That my dear readers is the message I will keep in my mind as I sit painfully through some lectures in the HS auditorium tomorrow morning and then later as I limp back in to my own building and prepare my room for the "big show" on Wednesday.
That saying about, "Those who can, do and those who can't, teach." is a bunch of bologna. I can and I teach and I do all that in spite of the MS.