Today is the one-month anniversary of my Dad's death. He went into the hospital on November 5th and died on the 8th.
I am not at work again. The anxiety is too much. It reaches into my stomach and pulls everything out until there is just a sick feeling. A feeling that I can't rid myself of and cannot control, one that makes me physically uncomfortable.
I feel safer in my house where no one else can get to me, no one else can see me. I can cry or just curl myself into a ball on the bed, lying motionless.
I am going back to see my trusty and wonderful therapist that I left behind in May. My need for him was over until recently. I must talk to someone about this anxiety.
He is a psychologist not a psychiatrist so he cannot adjust my meds. I feel like I could pop Xanax as if they were sweet tarts. I do not do this, however. More often than not, I forget to medicate myself. My diabetes is currently in charge of my poor pancreas, not me. I need to do better with that. Need to take care of myself all of the time, not just once in a while.
Some days pass quickly, in a blur, and others drag on forever. Sometimes hours are eternities and others mere seconds.
I still feel all the feelings that come with grieving: sadness, anger, guilt, weariness, and selfishness. It's like they have become entities that choose times to do battle with me, when I am peaceful they strike to remind me that no, not everything is okay.
Five years ago, on December 5th I was diagnosed with multiple sclerosis so Monday was almost a double whammy. Remembering Dad, remembering that you have MS and stress is not good for it. Meanwhile stress swirls in and out, like a rogue winter wind. Thankfully, the MS has mostly remained under good control. There have been a few bad days where I was just too exhausted and it all caught up with me.
Thank goodness for remission.
Thank goodness for my many friends who continue to support me during this time of adjustment. How do you ever get over the loss? Yet you do, your life moves on, and you must become in charge again.
Thank goodness for the fact that even though there were years of bad blood and resentment, that those days were pushed into the past safely and securely while a new relationship had been building in the present. Therapy and meds have literally saved my life, saved myself from being a victim of all the bad, and turned it all around until I faced everything head on and said, "Okay, this is my best me and I'm not going to take anything less than the best."
Thank goodness for therapy and meds, truly. Without them I would not be here today, sitting in this room, typing out my feelings, tentatively feeling an ounce better than I was when I started this.
Thank goodness for my Dad who used to throw me in the pool over and over forcing me to swim to survive. I now love to swim and that is one of his many gifts to me. I am a lucky, lucky girl.
Showing posts with label meds. Show all posts
Showing posts with label meds. Show all posts
Wednesday, December 8, 2010
Tuesday, October 20, 2009
Drain Bamaged or is it...
If you read yesterday's tiny post then you know I was tired. I now know why I was dragging tail all day. Chalk it up to some minor brain damage...
I lined my morning meds up today to take after ye olde shower. I sat down and started opening and closing pill bottles. I was on the last bottle when *alas* I realized yesterday's error. The last bottle was not my Provigil which keeps me awake and going. It was, instead, my Klonopin which helps to knock me out while it fights off muscle cramps and stiffness!
No wonder I about passed out on the drive in to work in the morning. I already take some meds which slow me down in the morning and the Klonopin on top of that made me doubly tired in the inky early morning darkness.
I remedied the situation and placed the Provigil in the right place and sucked down that pill along with the rest of my morning pharmacopia.
I'm still not sure why I took my pills that way this morning because I NEVER do it this way but something moved me to do it. I'm grateful for whatever higher power that was that helped me out. We all need a little help now and then.
I lined my morning meds up today to take after ye olde shower. I sat down and started opening and closing pill bottles. I was on the last bottle when *alas* I realized yesterday's error. The last bottle was not my Provigil which keeps me awake and going. It was, instead, my Klonopin which helps to knock me out while it fights off muscle cramps and stiffness!
No wonder I about passed out on the drive in to work in the morning. I already take some meds which slow me down in the morning and the Klonopin on top of that made me doubly tired in the inky early morning darkness.
I remedied the situation and placed the Provigil in the right place and sucked down that pill along with the rest of my morning pharmacopia.
I'm still not sure why I took my pills that way this morning because I NEVER do it this way but something moved me to do it. I'm grateful for whatever higher power that was that helped me out. We all need a little help now and then.
Friday, October 16, 2009
Another week down...
Another week down, a short one at that with only 4 working days, but it felt like oh so much longer. Today was Friday so yippee for that and the drinks we had after work. I like to call our little klatch the Meeting of the Minds. Others in the group think that's rather funny and it is. We get together to debrief and empty our minds of all of our worries.
I am starting to work on my next big fund raising project for work. I have done two projects in the last three years with nothing going on last year because I was out of work due to MS. Year one was raising money for Malaria No More and donating bed nets to people in Africa. Year two was raising money for the John Dau Medical Clinic in Sudan. This year we are going to raise money for Heifer International. Check them out at www.heifer.org to learn all the ins and outs. In a nutshell, the donated money goes to purchase animals that are given to people around the world who raise them and then pass on the offspring and teach others how to raise the animals. It's a sustainability project that works internationally along with several projects within the United States.
Hey, a thought just occurred to me! I have started exercising again for half hour intervals. I'm no Buns of Steel here but I am walking and shaking my ample booty a bit. I have also stopped eating a lot of the foods that I used to be addicted to. I am breaking the binging habit. I'm not saying that I am eating healthy all of the time but I have cut way back on the amounts I am eating. Something is changing within me.
Also, therapy looks like it is going to wind down here within the next six months or so. I am no longer the angry and defiant woman that I used to be. A lot of the stuff that I used to carry around has been taken off my yoke. Actually, consider me yoke-less. I am no longer tethered to anything that has to be carried around all of the time. I have learned to let things goooooo. There is less stress in my life which is a great thing when you have MS. I still battle depression but that is well under control with meds. I'll still be taking them but cutting the strings of therapy loose from my life.
All right folks, it's about 9 p.m. which is my bedtime (laugh if you must) and I am not proofreading this so sorry for the lameo, rambling post!
Night.
I am starting to work on my next big fund raising project for work. I have done two projects in the last three years with nothing going on last year because I was out of work due to MS. Year one was raising money for Malaria No More and donating bed nets to people in Africa. Year two was raising money for the John Dau Medical Clinic in Sudan. This year we are going to raise money for Heifer International. Check them out at www.heifer.org to learn all the ins and outs. In a nutshell, the donated money goes to purchase animals that are given to people around the world who raise them and then pass on the offspring and teach others how to raise the animals. It's a sustainability project that works internationally along with several projects within the United States.
Hey, a thought just occurred to me! I have started exercising again for half hour intervals. I'm no Buns of Steel here but I am walking and shaking my ample booty a bit. I have also stopped eating a lot of the foods that I used to be addicted to. I am breaking the binging habit. I'm not saying that I am eating healthy all of the time but I have cut way back on the amounts I am eating. Something is changing within me.
Also, therapy looks like it is going to wind down here within the next six months or so. I am no longer the angry and defiant woman that I used to be. A lot of the stuff that I used to carry around has been taken off my yoke. Actually, consider me yoke-less. I am no longer tethered to anything that has to be carried around all of the time. I have learned to let things goooooo. There is less stress in my life which is a great thing when you have MS. I still battle depression but that is well under control with meds. I'll still be taking them but cutting the strings of therapy loose from my life.
All right folks, it's about 9 p.m. which is my bedtime (laugh if you must) and I am not proofreading this so sorry for the lameo, rambling post!
Night.
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.
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.
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!)
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!)
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.
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.
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.
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.
Saturday, July 25, 2009
What to write about?
I feel as if I have been neglectful of ye olde blog readers and I have been. I just don't know what to write about. My get up and go just seemed to get up and leave. My summer vacation has been a total staycation with me mostly sleeping and reading it away.
I mean that. I am sleeping and reading my life away. Most days I don't hit the shower until 3 or so. I am the ultimate in lazy.
Some days I think it would be better to be back at work. I can't believe I just typed that. I've been on vacation for about a month now and I don't know what to do with myself.
I do have to work for two days this next coming week. Two days and then we're going out for drinks. We're supposed to be trying a new place with cheap daiquiris and margaritas. I'm all for that.
I have not been drinking for several years because of all the meds that run through my system. I followed the rules and played the good girl. Recently I have been going out with some friends and having a drink or two or (even once) three. I don't feel any worse for the wear and I always space my drinks out so I never even get tipsy.
Is there anyone else out there in the MS community who drinks or doesn't drink based on medical concerns? Tell me about your experiences if you'd like.
I mean that. I am sleeping and reading my life away. Most days I don't hit the shower until 3 or so. I am the ultimate in lazy.
Some days I think it would be better to be back at work. I can't believe I just typed that. I've been on vacation for about a month now and I don't know what to do with myself.
I do have to work for two days this next coming week. Two days and then we're going out for drinks. We're supposed to be trying a new place with cheap daiquiris and margaritas. I'm all for that.
I have not been drinking for several years because of all the meds that run through my system. I followed the rules and played the good girl. Recently I have been going out with some friends and having a drink or two or (even once) three. I don't feel any worse for the wear and I always space my drinks out so I never even get tipsy.
Is there anyone else out there in the MS community who drinks or doesn't drink based on medical concerns? Tell me about your experiences if you'd like.
Friday, April 17, 2009
Me vs. medication and insurance
I just finished taking my nightly cocktail of 5 different medications which in turn becomes seven and a half pills. My neuro upped my Requip at the beginning of the month to help with my restless leg twitches so I take a pill and a half now. It's a good thing I just took it because my legs are starting to bounce and those muscles are ready to kick it up and do a cha cha cha in my calves.
In the morning I take four-five other medications (5 when I'm working) which turns out to be 6 pills spread out over the morning.
I'm also supposed to take a multi-vitamin, Omega-3 fish oil capsules, and a heavy duty Vitamin D3 daily.
Hello my name is Weeble and I'm a pillaholic.
I take meds to go to sleep, to avoid pain, to help with depression and anxiety, to calm my legs, to lower my blood pressure, to wake up and stay alert. Name it and I probably have it covered. I also take Tysabri monthly instead of the daily Copaxone shots for two years and an almost year long attempt at Rebif three-times-a-week.
I try not to think about how much my insurance is paying for these various medications. I'm pretty sure my insurance has a cap on it of a million or two. I wonder how long I can keep up with the pill and Tysabri train before the train is no longer able to leave the station. Does anyone else out there with MS or other medical issues ever think about this stuff? What will I do if I eventually hit the top of my limit? I know it won't be this year or next but it could happen.
I'm already paying a lot out of pocket for Tysabri and I just got a bill from OT I had this past summer for $155. I know how much some of my meds cost compared to what I pay for them. Thankfully, we have good prescription benefits where I work. Knock on wood. But still...
Just some things that have been on my mind recently. I have been thinking that maybe I should consider participating in a drug trial. You might get a placebo and you might not but all the costs are covered including doctor visits and MRIs. For now, I will stick with Tysabri and my pills.
Anyone have any thoughts on any of this?
In the morning I take four-five other medications (5 when I'm working) which turns out to be 6 pills spread out over the morning.
I'm also supposed to take a multi-vitamin, Omega-3 fish oil capsules, and a heavy duty Vitamin D3 daily.
Hello my name is Weeble and I'm a pillaholic.
I take meds to go to sleep, to avoid pain, to help with depression and anxiety, to calm my legs, to lower my blood pressure, to wake up and stay alert. Name it and I probably have it covered. I also take Tysabri monthly instead of the daily Copaxone shots for two years and an almost year long attempt at Rebif three-times-a-week.
I try not to think about how much my insurance is paying for these various medications. I'm pretty sure my insurance has a cap on it of a million or two. I wonder how long I can keep up with the pill and Tysabri train before the train is no longer able to leave the station. Does anyone else out there with MS or other medical issues ever think about this stuff? What will I do if I eventually hit the top of my limit? I know it won't be this year or next but it could happen.
I'm already paying a lot out of pocket for Tysabri and I just got a bill from OT I had this past summer for $155. I know how much some of my meds cost compared to what I pay for them. Thankfully, we have good prescription benefits where I work. Knock on wood. But still...
Just some things that have been on my mind recently. I have been thinking that maybe I should consider participating in a drug trial. You might get a placebo and you might not but all the costs are covered including doctor visits and MRIs. For now, I will stick with Tysabri and my pills.
Anyone have any thoughts on any of this?
Tuesday, April 14, 2009
Dad update
My dad was quite sick in January which is why I didn't post much then. I was too busy riding back and forth to the hospital and seeing my brother and sister who both came home from Iraq to see my dad.
Since he has been out of the hospital he has had to wear a special vest pretty much 24/7. The only time he doesn't wear it is in the shower when someone has to stand outside and make sure that he doesn't pass out while in the tub. The vest goes under his clothes and gongs if it comes undone or detects some problem with the set up of the vest making sleeping difficult. Last night it went off four times according to my mother and as one can imagine, who doesn't want to wake up at random times to a gong?
Last week my dad had a MUGA scan and it showed that some things weren't working up to full capacity. That means that some time in the next two weeks he is going back to the hospital for surgery to put in an automatic defibrillator. It's an overnight stay and then he comes home and can't use his left arm for much for 6 weeks. That makes him a little unhappy because it is almost golf season.
It should be a routine procedure and I'll update this when I have an operation date for him.
Off Topic Tysabri Rant
I think I need to call the insurance company because I am still paying for my Tysabri infusions and it's getting cheaper but still putting a strain on my budget. The first month for this year was a straight $500. The second month was $338.88. The third month which I just received an EOB on is something like $230. I don't know about you but this is a lot of extra money coming out of the same paycheck.
I've also had the car in the shop twice since January to the tune of about $1500 total. Where oh where is all this extra money to come from? My hot rich fantasy manlover?
Sigh, things could be much worse. I could have no job and no insurance. I really hate the idea of disability without medical coverage for two years. Thanks federal government for making me feel secure in that if I can't do my job, I can wait two years until you think you can kick in some insurance type monies my way. There are lots of people in this situation and lots that can't even afford Tysabri at all so I shall come to the end of my b!tching now.
Since he has been out of the hospital he has had to wear a special vest pretty much 24/7. The only time he doesn't wear it is in the shower when someone has to stand outside and make sure that he doesn't pass out while in the tub. The vest goes under his clothes and gongs if it comes undone or detects some problem with the set up of the vest making sleeping difficult. Last night it went off four times according to my mother and as one can imagine, who doesn't want to wake up at random times to a gong?
Last week my dad had a MUGA scan and it showed that some things weren't working up to full capacity. That means that some time in the next two weeks he is going back to the hospital for surgery to put in an automatic defibrillator. It's an overnight stay and then he comes home and can't use his left arm for much for 6 weeks. That makes him a little unhappy because it is almost golf season.
It should be a routine procedure and I'll update this when I have an operation date for him.
Off Topic Tysabri Rant
I think I need to call the insurance company because I am still paying for my Tysabri infusions and it's getting cheaper but still putting a strain on my budget. The first month for this year was a straight $500. The second month was $338.88. The third month which I just received an EOB on is something like $230. I don't know about you but this is a lot of extra money coming out of the same paycheck.
I've also had the car in the shop twice since January to the tune of about $1500 total. Where oh where is all this extra money to come from? My hot rich fantasy manlover?
Sigh, things could be much worse. I could have no job and no insurance. I really hate the idea of disability without medical coverage for two years. Thanks federal government for making me feel secure in that if I can't do my job, I can wait two years until you think you can kick in some insurance type monies my way. There are lots of people in this situation and lots that can't even afford Tysabri at all so I shall come to the end of my b!tching now.
Wednesday, April 1, 2009
Oh the little joys (annoyances) of MS
Once again my sleep is interrupted and I am awake at an ungodly hour. Yesterday I was awake from 2:30 - 4:45. Today I was awakened at three a.m. and I found I had peed the bed a little. Yippee! Isn't that what every 38-year old woman does?
I know my multiple sclerosis is fairly benign compared to other people's MS. However, it's been ramping up silently and slowly lately and it's starting to really annoy me. For example, the sleep thing is getting ridiculous. I take enough meds at night to knock out a horse. Two of those meds are Requip and Baclofen which should take the edge off my muscle twitches but not so much lately.
Most nights, or should I say mornings, I'm aroused (NOT in that way) because my legs are a-popping. My calf and lower leg muscles are bouncing around and bouncing against each other. I can only ignore so much and then I get out of bed. Once I am upright the popping or muscle fasciculations (fancy word for twitches) usually stop. I am so desperate to sleep through the night that I usually put a hot corn bag (like a heating pad) under both legs each night before I go to sleep. That is what I used to do this past summer and it worked much better than it is now.
So here I am b!tching about minor things when I know it can be much worse. I need to call the neuro's office again today to check on things. The last time I was there we talked about my lack of sleep, which, if you know me has never been a real problem before. I need to talk about my increase in leg fasciculations because it's not even close to summer yet when things really ramp up to a high level.
Anyone have any ideas or suggestions for the sleep and/or muscle twitches? I don't think it's a case of missing any potassium or something like that. I know the neuro wanted to try melatonin for sleep but I am wary of that because a friend sent me a link saying that it may not be the best for people with MS and that it can affect depression which I also deal with on a daily basis. That means I need to ask the neuro about that specifically.
Sigh, I know it could be worse but it's not usually like this in April when it's not even hot yet. I'm done b!thcing for now. Wish me good night, please!
Saturday, March 21, 2009
Something different: depression
Picture, if you will,
an image of a gypsy woman
dancing wildly
cloths flying through air
jewels clanging against another.
"Will you join me?"
I ask.
You reply,
"This dance is no good for us."
I continue on
because another dance -
a new dance
brings forth
more intimacy,
more fear
less contentment of knowing
what I know
and
always doing what I do.
Was it Sisyphus who pushed the rock?
What am I going to choose now?
**** (Original poetry)
That's a poem I fashioned after my therapy appointment on Thursday. I have a great therapist who I have worked with since 2000 after yet another bad depression spell. Depression has been a major part of my life going back as far as fifth grade.
The metaphor of the dance has to do with me allowing new opportunities in my life and the ability to change things up. I'm not good with that. I only want to dance the one dance I know how. If I change this, then I have to get comfortable with a partner who must hold me, lead me, guide me. I'm not used to that.
I am incredibly lonely. It's worse now because I am out of work. I see no other people some days out of the week if I don't leave my apartment. Thank goodness I have a wonder feline to at least offer up some companionship.
To change this I need to change the dance. I say I want to but do I really? I'm frightened of people getting close to me, growing intimate not in a sexual way, because I am so used to being hurt, being left behind, feeling unloved.
This comes from my own background of growing up feeling abandoned by my bio-dad because he gave me up, feeling abandoned by my own mother, feeling less than because of my adoptive father. Feeling alone and tortured starting in childhood and continuing as I grew older.
My depression started in fifth grade with a vengeance. I used to cut at my wrists and find ways to hurt myself. I didn't know why I was doing it; I just knew I had to do it. I remember sitting in the back seat of the car as my family drove around sobbing silently and wiping tears away with my coat sleeves. I felt such a deep sadness all the time and it only grew worse over the years.
Depression is like a bad friend you can't get rid of, no matter what you try. There is nothing like being in the throes of deep depression. I get so deeply enmeshed in the sadness, the pain, the hurt and the personal demons that there seems to be no way out. I was there not so long ago.
Thankfully, I am not there today. I know enough now and some of my friends know enough to mention when I am floundering in the deep sea of depression. I go to my therapists and doctors and tell them how my mind is no longer thinking clearly. I beg them to help me because I know toughing it out is not an option for me. Regardless of what Tom Cruise thinks, depression sometimes must be treated with medication, or a variety of medications which is what I deal with, or hospitalization which I have dealt with in the past. It's not pretty and it is what it is.
Depression is partially the reason I wasn't able to leave my abusive marriage. It was also a part of why I couldn't say no to marriage even when I could see there were issues. Depression has affected my work, my play, my relationships, my friends, everything in my life.
So what about the dance? It's scary to commit to something new but I am open to trying. I'm not saying I'm fully embracing it but I am slowly forcing myself to consider something different, a new dance, a new life for me.
As much as I am lonely, I am not totally alone. I have friends who listen and encourage me. I have therapists who encourage me. I'm slowly breaking through the cocoon and emerging. I'm not ready to fly yet but I am fluttering my wings slowly and getting used to a life with winds on which I can soar.
an image of a gypsy woman
dancing wildly
cloths flying through air
jewels clanging against another.
"Will you join me?"
I ask.
You reply,
"This dance is no good for us."
I continue on
because another dance -
a new dance
brings forth
more intimacy,
more fear
less contentment of knowing
what I know
and
always doing what I do.
Was it Sisyphus who pushed the rock?
What am I going to choose now?
**** (Original poetry)
That's a poem I fashioned after my therapy appointment on Thursday. I have a great therapist who I have worked with since 2000 after yet another bad depression spell. Depression has been a major part of my life going back as far as fifth grade.
The metaphor of the dance has to do with me allowing new opportunities in my life and the ability to change things up. I'm not good with that. I only want to dance the one dance I know how. If I change this, then I have to get comfortable with a partner who must hold me, lead me, guide me. I'm not used to that.
I am incredibly lonely. It's worse now because I am out of work. I see no other people some days out of the week if I don't leave my apartment. Thank goodness I have a wonder feline to at least offer up some companionship.
To change this I need to change the dance. I say I want to but do I really? I'm frightened of people getting close to me, growing intimate not in a sexual way, because I am so used to being hurt, being left behind, feeling unloved.
This comes from my own background of growing up feeling abandoned by my bio-dad because he gave me up, feeling abandoned by my own mother, feeling less than because of my adoptive father. Feeling alone and tortured starting in childhood and continuing as I grew older.
My depression started in fifth grade with a vengeance. I used to cut at my wrists and find ways to hurt myself. I didn't know why I was doing it; I just knew I had to do it. I remember sitting in the back seat of the car as my family drove around sobbing silently and wiping tears away with my coat sleeves. I felt such a deep sadness all the time and it only grew worse over the years.
Depression is like a bad friend you can't get rid of, no matter what you try. There is nothing like being in the throes of deep depression. I get so deeply enmeshed in the sadness, the pain, the hurt and the personal demons that there seems to be no way out. I was there not so long ago.
Thankfully, I am not there today. I know enough now and some of my friends know enough to mention when I am floundering in the deep sea of depression. I go to my therapists and doctors and tell them how my mind is no longer thinking clearly. I beg them to help me because I know toughing it out is not an option for me. Regardless of what Tom Cruise thinks, depression sometimes must be treated with medication, or a variety of medications which is what I deal with, or hospitalization which I have dealt with in the past. It's not pretty and it is what it is.
Depression is partially the reason I wasn't able to leave my abusive marriage. It was also a part of why I couldn't say no to marriage even when I could see there were issues. Depression has affected my work, my play, my relationships, my friends, everything in my life.
So what about the dance? It's scary to commit to something new but I am open to trying. I'm not saying I'm fully embracing it but I am slowly forcing myself to consider something different, a new dance, a new life for me.
As much as I am lonely, I am not totally alone. I have friends who listen and encourage me. I have therapists who encourage me. I'm slowly breaking through the cocoon and emerging. I'm not ready to fly yet but I am fluttering my wings slowly and getting used to a life with winds on which I can soar.
Thursday, March 5, 2009
Here's the after the neurologist
A beautiful day for a drive yesterday and I made it to the neuro's office with time to use the loo before the appointment. Upon entering the office I noticed I was the only patient in the waiting room, yippee. The "man" came for me within two minutes of planting my buttocks in a comfy chair.
Into the waiting room I went and planted my behind in another, not so comfy, chair. The "man" asked me what had been going on so I talked about PT which he was pleased about. He suggested that I get a trainer and work out at a local gym. I said I would think about it which means I probably won't do it. It is a good idea but trainers can be pricey and the best gym for me is about 15 minutes away which is plenty of time for me to talk myself out of going.
We also talked about the nutritionist and he was equally delighted about this whole new angle. It's no secret that I am a walking whale/weeble/watermelon with arms and legs. I'm not just a little chubby; I am a big girl. I wish I wasn't this big but I am and I am working a pound at a time and doing my exercises one minute at a time. So go me!
We talked about the sleeping issues and he made two suggestions. First, he is writing a script for what I think is called oxygen telemetry. I could be wrong on that, as I often am, but I am too lazy to go look at the script. I have sleep apnea and use a CPAP machine nightly but I will wear one of those oxygen clips on my finger overnight to see if I am getting enough oxygen. Not getting enough oxygen could be making me wake up often.
If it's not that then he suggested we try melatonin so as not to add any more meds into the mix as I take a boatload of them at night already. I used to be knocked out easily with these meds but now I seem to be waking up a lot at night after each dream cycle. This is something new as of the last three weeks or so.
There was no blood work ordered, no drunk walk, and no new MRIs scheduled. I won't see the "man" again until August unless there is some sort of flare up. I did get a new script for Baclofen. We had a nice chat and I laughed and felt better that I was out of work for now.
That's the after. I'm so lucky to have access to good doctors and medical care at reasonable rates. I'm lucky I have a good, solid job. I'm just really, really lucky.
Into the waiting room I went and planted my behind in another, not so comfy, chair. The "man" asked me what had been going on so I talked about PT which he was pleased about. He suggested that I get a trainer and work out at a local gym. I said I would think about it which means I probably won't do it. It is a good idea but trainers can be pricey and the best gym for me is about 15 minutes away which is plenty of time for me to talk myself out of going.
We also talked about the nutritionist and he was equally delighted about this whole new angle. It's no secret that I am a walking whale/weeble/watermelon with arms and legs. I'm not just a little chubby; I am a big girl. I wish I wasn't this big but I am and I am working a pound at a time and doing my exercises one minute at a time. So go me!
We talked about the sleeping issues and he made two suggestions. First, he is writing a script for what I think is called oxygen telemetry. I could be wrong on that, as I often am, but I am too lazy to go look at the script. I have sleep apnea and use a CPAP machine nightly but I will wear one of those oxygen clips on my finger overnight to see if I am getting enough oxygen. Not getting enough oxygen could be making me wake up often.
If it's not that then he suggested we try melatonin so as not to add any more meds into the mix as I take a boatload of them at night already. I used to be knocked out easily with these meds but now I seem to be waking up a lot at night after each dream cycle. This is something new as of the last three weeks or so.
There was no blood work ordered, no drunk walk, and no new MRIs scheduled. I won't see the "man" again until August unless there is some sort of flare up. I did get a new script for Baclofen. We had a nice chat and I laughed and felt better that I was out of work for now.
That's the after. I'm so lucky to have access to good doctors and medical care at reasonable rates. I'm lucky I have a good, solid job. I'm just really, really lucky.
Thursday, February 12, 2009
More information about the teriflunomide study
Here's more information about the study I mentioned yesterday by MediciGlobal:
My name is Ashley Toal, and I work in Patient Advocacy at MediciGlobal. We’re working on a multiple sclerosis clinical research study assessing the safety and effectiveness of an oral investigational study medication, teriflunomide. We’d love your help in informing the MS community about this study.
Information about this study is also listed on a number of MS advocacy group websites including the National MS Society, MS Foundation and the Consortium of MS Centers. I hope that you can also help us inform you MS blogging community about the study. Please feel free to call or email me with any questions.
Best,
Ashley
Ashley Toal
MediciGlobal
1014 West 9th Avenue
King of Prussia, PA 19406
(P) 484-674-6873
atoal@mediciglobal.com
www.mediciglobal.com
A Clinical Research Study Evaluating An Investigational Medication for Relapsing Forms of Multiple Sclerosis
Medical researchers are enrolling people in a worldwide clinical research study for people with relapsing forms of multiple sclerosis (RMS). This study will assess the safety and effectiveness of an investigational study medication versus placebo (an inactive substance which contains no active medication) in people ages 18-55 years old with RMS.
The investigational medication used in this study is called teriflunomide (ter-i-flün-ō-mïde). It is derived from leflunomide (le-flü-nō-mïde), also known as Arava®. Arava® is already approved in many countries for the treatment of rheumatoid arthritis, another autoimmune disease.
The first step in determining eligibility for this study is to take the pre-screening questionnaire either online or on the phone. You will be asked a series of questions related to your health and be given additional information about study site locations. Visit www.tower3.msstudies.com or call 1-866-565-0246 today to learn more about the study and see if you may qualify.
I checked out the website and they are accepting "applications" for some different locations, even where I live there is a location coming up soon. Lisa over at Brass and Ivory has done some research on this medication so you can hop over to her site from mine and look for it.
It's rather windy today and rainy; of course, it happens on the day my hair gets done and looks good. Oh well, there are far worse tragedies in the world.
Have a fab Thursday!
My name is Ashley Toal, and I work in Patient Advocacy at MediciGlobal. We’re working on a multiple sclerosis clinical research study assessing the safety and effectiveness of an oral investigational study medication, teriflunomide. We’d love your help in informing the MS community about this study.
Information about this study is also listed on a number of MS advocacy group websites including the National MS Society, MS Foundation and the Consortium of MS Centers. I hope that you can also help us inform you MS blogging community about the study. Please feel free to call or email me with any questions.
Best,
Ashley
Ashley Toal
MediciGlobal
1014 West 9th Avenue
King of Prussia, PA 19406
(P) 484-674-6873
atoal@mediciglobal.com
www.mediciglobal.com
A Clinical Research Study Evaluating An Investigational Medication for Relapsing Forms of Multiple Sclerosis
Medical researchers are enrolling people in a worldwide clinical research study for people with relapsing forms of multiple sclerosis (RMS). This study will assess the safety and effectiveness of an investigational study medication versus placebo (an inactive substance which contains no active medication) in people ages 18-55 years old with RMS.
The investigational medication used in this study is called teriflunomide (ter-i-flün-ō-mïde). It is derived from leflunomide (le-flü-nō-mïde), also known as Arava®. Arava® is already approved in many countries for the treatment of rheumatoid arthritis, another autoimmune disease.
The first step in determining eligibility for this study is to take the pre-screening questionnaire either online or on the phone. You will be asked a series of questions related to your health and be given additional information about study site locations. Visit www.tower3.msstudies.com or call 1-866-565-0246 today to learn more about the study and see if you may qualify.
I checked out the website and they are accepting "applications" for some different locations, even where I live there is a location coming up soon. Lisa over at Brass and Ivory has done some research on this medication so you can hop over to her site from mine and look for it.
It's rather windy today and rainy; of course, it happens on the day my hair gets done and looks good. Oh well, there are far worse tragedies in the world.
Have a fab Thursday!
Monday, December 8, 2008
MS and One's Feelings
I'm taking today's post from a response that I gave to another teacher with MS who's also a blogger. It's all about emotions and feelings and how they can change and do change through the course of this disease. Just like this disease can change from one day to the next so can the way you view it and describe it. The picture at the top will make more sense in a few paragraphs.
Vulnerable is a good word to use when describing MS and my feelings. I never know when or if something will get better, or if something new will act up, or if something else will just get worse. I'm at the mercy of MS and I'm not all that jazzed about it.
I felt like my blogger friend did after our most recent MRIs which showed positive results. I felt happy but then divided. Why didn't I feel better if some of my brain lesions had disappeared? I know others without a lot of MS knowledge would just assume that I must be better if the MRI was better but I know that's not the truth. It's not the same as a cut that gets a band aid and then a few days later it's all healed. MS doesn't work that way. MS does what it wants when it wants and you're at its beck and call.
MS sure has my brain wrapped up like a See-N-Say, remember those toys from childhood? You pulled the handle and it stopped on a picture and made a noise. Except someone else is pulling the handle and a random emotion comes up. That's how I often feel. What will it be today? Depression, elation, boredom, loneliness, anger, happiness...
That's why the picture is at the top. I know I can control my emotions to an extent but there are some things that are out of my control. I do the best I can and I know my medicines help me. Some people don't believe in antidepressants but I cannot live without them. They keep me from living on a constant pull-and-twirl cycle of sadness and self-loathing. Boy, are those meds worth it.
I may get sadness now and then on my emotional See-N-Say but not every day and that is a step in the right direction.
Tuesday, October 21, 2008
Tuesday, home again
My computer was down last night and this morning until I spent an hour, yes a solid hour, with the IT people from Verizon. Thank you readers for the comments and positive thoughts. I always appreciate it when someone comments. Thank you, thank you, thank you!
I saw the hottie PCP partner yesterday and he ran more bloodwork. I believe the insurance company is going to start watching me closely because I seem to be constantly getting bloodwork done. It's not like I enjoy it or ask for it (okay, I did ask for the gyn to run something) but it gets done. Thank goodness I have some decent insurance.
No UTI, not that I thought I had one but that is generally the first reason people with MS can throw off a fever. Then again the hottie doc reviewed my notes and realized that I had complained of the same thing back in July! July, people. That would have to be one heck of a UTI. I suspect I wouldn't even have a urinary tract anymore if I truly had had a UTI for that long.
Hottie doc asked me what prior neuro had thought about all this. Prior neuro is a prior neuro for a reason. He did nothing and thought nothing. Prior neuro had left me hanging and feeling $hitty since about May.
New neuro's P.A. guy is weird and I am wondering if he is weird with everyone or just with me. The things he says make me wonder if he's ADD without meds. He wanted me to get checked out for infections and viruses that could be spread by munchkins. (And no, I don't have MRSA even though someone in one of our school buildings does.)
Off I went and no infections, bloodwork ordered, told to stay home today and return for a repeat visit of sorts. Hottie doc thinks some of my problems is the enormous amount of meds I am on. So he wants to whittle away at the list.
The only really new stuff is off my old AD and on 2 new ones at very low doses, one of which I was on before, plus a Xanax dosage increase. I know just about everything I take, except Provigil, makes people tired and/or dizzy. I've been on this stuff forever.
I called Psych R.N. last night and left a message about the med whittling but I think he is in his other office today so I suspect I won't hear from him until Wednesday. He's the one managing most of my meds.
Then I need to call the neuro's office today (which I didn't do yesterday, bad Weeble) and tell them what today's visit brings. I expect it to be somewhat like a poker game. I'll give up Seroquel and cut down on Baclofen if you give me sleeping med X that will run through my system in less than ten hours. I'm willing to cut down on Xanax and double Provigil to 400 mg again but I will not give up Abilify and Lexapro. Plus, he wants to raise my blood pressure meds and add in a diuretic. (The only place I have high BP is their office, honest.) Maybe I can try to cut down on Requip. (I already took myself off Klonopin.)
He thinks all the pharmacological stuff is making me more cog foggy. I don't really buy that. I think part of it is the depression, part the demands of being in this higher stress inclusion classroom, and part due to MS. I don't think it's the meds that make me forget how to divide or teach or name items or drive properly or spell and type (You should see the first version of my post, holey moley Blogreaders!). Then again, I have been wrong before.
Hottie doc says it could be a flare and maybe we need a new MRI. It may be a flare but I'll wait on the MRI for another few months on Tysabri, thanks. I still don't even know what the infusion palace center's costs are yet. Every time I get an EOB (explanation of benefits) I panic a a bit because the costs have the ability to be rather large, as some of you Tysabri people know.
**The good news is I've had three days without purging. I'm still way behind on grading but I did a tiny bit this morning. Oh, and BJM has an answer to her medical dilemma and it's not MS which means I can also throw out my Rebif and Copaxone bags of stuff/crap because she won't need them, thank the person upstairs. I also cleaned more and threw out more stuff/crap last night.
I hope that I can get a good nap in this afternoon.
I saw the hottie PCP partner yesterday and he ran more bloodwork. I believe the insurance company is going to start watching me closely because I seem to be constantly getting bloodwork done. It's not like I enjoy it or ask for it (okay, I did ask for the gyn to run something) but it gets done. Thank goodness I have some decent insurance.
No UTI, not that I thought I had one but that is generally the first reason people with MS can throw off a fever. Then again the hottie doc reviewed my notes and realized that I had complained of the same thing back in July! July, people. That would have to be one heck of a UTI. I suspect I wouldn't even have a urinary tract anymore if I truly had had a UTI for that long.
Hottie doc asked me what prior neuro had thought about all this. Prior neuro is a prior neuro for a reason. He did nothing and thought nothing. Prior neuro had left me hanging and feeling $hitty since about May.
New neuro's P.A. guy is weird and I am wondering if he is weird with everyone or just with me. The things he says make me wonder if he's ADD without meds. He wanted me to get checked out for infections and viruses that could be spread by munchkins. (And no, I don't have MRSA even though someone in one of our school buildings does.)
Off I went and no infections, bloodwork ordered, told to stay home today and return for a repeat visit of sorts. Hottie doc thinks some of my problems is the enormous amount of meds I am on. So he wants to whittle away at the list.
The only really new stuff is off my old AD and on 2 new ones at very low doses, one of which I was on before, plus a Xanax dosage increase. I know just about everything I take, except Provigil, makes people tired and/or dizzy. I've been on this stuff forever.
I called Psych R.N. last night and left a message about the med whittling but I think he is in his other office today so I suspect I won't hear from him until Wednesday. He's the one managing most of my meds.
Then I need to call the neuro's office today (which I didn't do yesterday, bad Weeble) and tell them what today's visit brings. I expect it to be somewhat like a poker game. I'll give up Seroquel and cut down on Baclofen if you give me sleeping med X that will run through my system in less than ten hours. I'm willing to cut down on Xanax and double Provigil to 400 mg again but I will not give up Abilify and Lexapro. Plus, he wants to raise my blood pressure meds and add in a diuretic. (The only place I have high BP is their office, honest.) Maybe I can try to cut down on Requip. (I already took myself off Klonopin.)
He thinks all the pharmacological stuff is making me more cog foggy. I don't really buy that. I think part of it is the depression, part the demands of being in this higher stress inclusion classroom, and part due to MS. I don't think it's the meds that make me forget how to divide or teach or name items or drive properly or spell and type (You should see the first version of my post, holey moley Blogreaders!). Then again, I have been wrong before.
Hottie doc says it could be a flare and maybe we need a new MRI. It may be a flare but I'll wait on the MRI for another few months on Tysabri, thanks. I still don't even know what the infusion palace center's costs are yet. Every time I get an EOB (explanation of benefits) I panic a a bit because the costs have the ability to be rather large, as some of you Tysabri people know.
**The good news is I've had three days without purging. I'm still way behind on grading but I did a tiny bit this morning. Oh, and BJM has an answer to her medical dilemma and it's not MS which means I can also throw out my Rebif and Copaxone bags of stuff/crap because she won't need them, thank the person upstairs. I also cleaned more and threw out more stuff/crap last night.
I hope that I can get a good nap in this afternoon.
Wednesday, October 15, 2008
Thoughts for my Thursday
Today (which is really Wednesday) was exhausting. I mean wiped out before we even made it to lunch. I am guessing it's the new meds (the Abilify and Lexapro). I was tired yesterday too but this was different, trying to be on my feet and playing my role as happy teacher. I could barely do it. I'm toying with that idea of taking some time off now but I really can't afford it.
I keep thinking that if I take some time off now to readjust and feel better, feel well, feel something other than crappy then maybe that's what I need to do.
I'm not sure if I need more Ritalin or if I should switch back to my Provigil to get my morning dose of wake-up juice. My Ritalin is almost out and the Psych R.N. doesn't remember that he was the last one who wrote the script. I have so many scripts and different script writers, that I have a hard time remembering who prescribed what and when. Today I crossed the line a few times and then almost went off the side of the road because I was so tired on my way to school.
Then I came home and binged and purged on purpose and it so wasn't worth it. I rested a bit while reading and then took out the air conditioner from my bedroom window, a somewhat monumental task. I did some exercising while making copies for math on my copier. Then it was time for my nightly med parade. Now I am hoping for deep slumber soon to get me through to the next day.
Thursday really is my sister's birthday, a quarter of a century on this third rock from the sun. I need to mail out her package after work. She's still serving in Iraq and it's been a year since she's been home. I miss her a lot and wish I could see her face when she opens up her random goodies. I suspect that anything is a treat over there and it has to be better than a horrible sandstorm kicking up dust in your eye.
I keep thinking that if I take some time off now to readjust and feel better, feel well, feel something other than crappy then maybe that's what I need to do.
I'm not sure if I need more Ritalin or if I should switch back to my Provigil to get my morning dose of wake-up juice. My Ritalin is almost out and the Psych R.N. doesn't remember that he was the last one who wrote the script. I have so many scripts and different script writers, that I have a hard time remembering who prescribed what and when. Today I crossed the line a few times and then almost went off the side of the road because I was so tired on my way to school.
Then I came home and binged and purged on purpose and it so wasn't worth it. I rested a bit while reading and then took out the air conditioner from my bedroom window, a somewhat monumental task. I did some exercising while making copies for math on my copier. Then it was time for my nightly med parade. Now I am hoping for deep slumber soon to get me through to the next day.
Thursday really is my sister's birthday, a quarter of a century on this third rock from the sun. I need to mail out her package after work. She's still serving in Iraq and it's been a year since she's been home. I miss her a lot and wish I could see her face when she opens up her random goodies. I suspect that anything is a treat over there and it has to be better than a horrible sandstorm kicking up dust in your eye.
Tuesday, October 14, 2008
It's my Monday
Thanks to the extreme generosity of King Ferdinand and that sweet talking Queen Isabella, I had yesterday off. No students today but it's a professional development day, which means that all the things we really need to do won't get done today. Instead someone else has come up with topics for us to learn more about that sound great but aren't always actually practical.
I am showered and all doped up: Xanaxed, Ritalined, Abilified, and Lexaproed! (Look, I made verbs out of nouns; I am so clever!)
I am ready to go to work in my shorts (it will be almost 80 today which sucks for me because my body hates the heat) and do my Quiet Weeble Sunshine routine. I will answer your questions at work. I will say that it sucks that the weekend is over. I will say, "Yes, it went too fast." I'll do all those things that are expected of me. I always do.
I did a 2 mile walking DVD in my apartment yesterday and then went in to mass cleaning and throwing crap out mode. I jammed six more garbage bags and a few smaller bags filled with new and/or other good stuff that I don't want or need and made several trips up the stairs and out to the dumpster. Too bad you didn't know where I live as there are some Halloweeny things packed in there. Dumpster diver man will be salivating at the very sight of all those see-through bags neatly stacked up for him!
There are more things that were sorted that need to go in the actual trash dumpster as trash but that may have to wait. Tomorrow is real deal school and I must prepare myself with plans and papers and such.
In other good news, my neurologist did call me back yesterday and we talked about the depression. He's satisfied that I have two other people working on that part of me. Also, the blood vessels on my face are no longer blotchy and angry red so my skin looks much nicer. My new hair color and the fact that I washed it today means progress on the hairdo front. I am on new medicines that will work, will work, will work, must work. I paid some bills last evening so they can go in the mail today. And, I shaved my legs a few days ago for my visit to the gynecologist today.
Breathe in, out, repeat. Thank goodness we do that automatically.
**Thanks again for all the positive comments from those of you who post them here or email me. I do appreciate it even though I sound like an evil witch most of the time. I am working towards making my life tolerable and less punishing. Your words of encouragement always help.
(And especially for BJM, hang in there girl. I'm hoping we won't be MS sisters but hey, I know how to hook up those IVs like a pro. Horrible joke there, feel free to cause me bodily harm when we see each other next.)
I am showered and all doped up: Xanaxed, Ritalined, Abilified, and Lexaproed! (Look, I made verbs out of nouns; I am so clever!)
I am ready to go to work in my shorts (it will be almost 80 today which sucks for me because my body hates the heat) and do my Quiet Weeble Sunshine routine. I will answer your questions at work. I will say that it sucks that the weekend is over. I will say, "Yes, it went too fast." I'll do all those things that are expected of me. I always do.
I did a 2 mile walking DVD in my apartment yesterday and then went in to mass cleaning and throwing crap out mode. I jammed six more garbage bags and a few smaller bags filled with new and/or other good stuff that I don't want or need and made several trips up the stairs and out to the dumpster. Too bad you didn't know where I live as there are some Halloweeny things packed in there. Dumpster diver man will be salivating at the very sight of all those see-through bags neatly stacked up for him!
There are more things that were sorted that need to go in the actual trash dumpster as trash but that may have to wait. Tomorrow is real deal school and I must prepare myself with plans and papers and such.
In other good news, my neurologist did call me back yesterday and we talked about the depression. He's satisfied that I have two other people working on that part of me. Also, the blood vessels on my face are no longer blotchy and angry red so my skin looks much nicer. My new hair color and the fact that I washed it today means progress on the hairdo front. I am on new medicines that will work, will work, will work, must work. I paid some bills last evening so they can go in the mail today. And, I shaved my legs a few days ago for my visit to the gynecologist today.
Breathe in, out, repeat. Thank goodness we do that automatically.
**Thanks again for all the positive comments from those of you who post them here or email me. I do appreciate it even though I sound like an evil witch most of the time. I am working towards making my life tolerable and less punishing. Your words of encouragement always help.
(And especially for BJM, hang in there girl. I'm hoping we won't be MS sisters but hey, I know how to hook up those IVs like a pro. Horrible joke there, feel free to cause me bodily harm when we see each other next.)
Saturday, October 11, 2008
Saturday update: work and health
Work life:
I made it through this three-day work week, after taking two days off, and next week will also be only three days because of Columbus (hero or despised invader?) and a professional development day.
Wait until you hear what our professional day centers around. Wait for it... some crap called GIS which I think refers to Geospatial Information Systems. Or it could be Geographical Information Systems and my MS is just blocking the real definition.
I have to have a partner for the activities during the day. I will get to play with a SMART board, which I don't have in my room. I just this last week had my borrowed TV and VCR hooked up correctly to show videos to my students. I mean actual academic videos and no just crap you throw in when you're too damn bored/crazy/lazy to actually teach.
I also believe we will be outside working on geocaching which sounds like great fun but will it really make me a better teacher? What I really need is time to work in my room uninterrupted by anyone else. I need time to put things in my computer, time to sort out my materials for my upcoming units, time to just sit and think and breathe without a time deadline hanging over my head.
There's something else we're doing that day with technology, and all it sounds great, but a whole day devoted to it? We have one SMART board at my grade level and I've heard from a reliable source (its owner) that it doesn't always work well. Some people have wall-mounted flat screen TVs which look great but actually have a smaller screen so kids need to be right on top of it to see what's going on. Some of the new TVs have already burned up because we purchased them cheaply and that company is no longer in business. Technology in our building for the average teacher, especially in my world of fifth grade, is ridiculously behind the times compared to some other local schools.
Health-wise:
I'm complying and taking my meds, including my new directive to take 2000 IU of vitamin D3 daily and my multi-vitamin with iron. I have a bruise now from my hand IV insertion. I don't cry as much.
My hands, however, have been real problems for me for the last three days. They ache and hurt so by the end of the day that I can't hold my book up to read. I could barely hold a pen during the last half of the day yesterday and write. I had to write some notes home and it was so painful and my handwriting looked like scribbling. I felt awful that I couldn't do such an easy thing.
Food is still a problem. Sometimes I almost eat two meals a day and then I have to purge myself from dinner meal stuff every other evening. It's like I have to punish myself for allowing myself to eat and trying to feel.
I'm angry but don't show it so that's how anger comes out for me, literally. This is my old bad behavior rising to the surface. I'm angry that I still feel so overwhelmed at work even though I'm working harder than ever to get it all under control. I know my observation last week went well although I have not received my invite to go down and discuss it with my boss. I know I am working harder on the paperwork and getting things graded faster. I know I have made a kazillion sets of copies for the weeks and reading selections ahead. We've started preparing for the state test in Social Studies that is coming up in mid-November.
It all seems like we're on track but the special education teacher and I am amazed at the sheer lack of effort by many students. We keep track of names on giant chart paper along with missing work. It is usually filled with at least 7 names for each assignment. That is mind-boggling for me. I have 18 math students in the lower group with two assistants and 21 students in my other regular class sessions.
How is that so many people just don't do homework? I try to call home and most of the numbers don't work. I send home notes and they don't always come back. I stayed after school twice this week to force people to catch up on work and I only worked three days. I stayed on a Friday and I never stay after on Fridays. I still do not go to lunch and sometimes I don't even eat lunch because I am working and then we have an occasional meeting.
I'm tired but having trouble falling asleep most nights. I'm forcing myself to take my evening meds earlier and hoping that will be the trick in getting me to sleep. Here I am on a Saturday morning awake at 5:30 for no reason and I am tired.
My mind still gets muddled at work. Names and words and papers and answers get all mixed up. I try to cover myself but children are fabulous at pointing out every wrong thing I do, no matter how many wrong things they do.
My typing on here is atrocious. I sometimes miss words altogether, I spell things wrong and I have always been a super speller, and I type the beginning of one word and end it with the letters of the second word and I type the second word and finish it with the letters of the first word. Almost every other word I type now is wrong in one way or another until I go back and fix it.
Is at all better? Yes, slightly.
There are many times when I am home and I think about the whole Heath Ledger thing. Did he really overdose on purpose or did he just mix things and accidentally kill himself while trying to feel better?
I'm not saying I am going to do that. That is not my plan. I can understand completely how a person could be in such a place that they mix and match meds trying to feel better. I try to act like I am better but I still didn't answer the phone last night when my best friend from Maine called. I prefer not to talk to anyone because then you have to pretend.
It is easier now to pretend that all is wonderful in my work world, thanks to the med increases. I know I have to keep working now, no matter what. Maybe in the future I can afford a leave but I can't afford one now. Maybe Tysabri will work in the next few months. Maybe I will get that miracle I'm hoping for in my life.
All I know is that my hands are tired and I am tired so I need to end this. I know there are so many people out there much worse off than I am. I try to remind myself of this so I will buck up and stop b!tching. When that happens, you all will be among the first to know!
I made it through this three-day work week, after taking two days off, and next week will also be only three days because of Columbus (hero or despised invader?) and a professional development day.
Wait until you hear what our professional day centers around. Wait for it... some crap called GIS which I think refers to Geospatial Information Systems. Or it could be Geographical Information Systems and my MS is just blocking the real definition.
I have to have a partner for the activities during the day. I will get to play with a SMART board, which I don't have in my room. I just this last week had my borrowed TV and VCR hooked up correctly to show videos to my students. I mean actual academic videos and no just crap you throw in when you're too damn bored/crazy/lazy to actually teach.
I also believe we will be outside working on geocaching which sounds like great fun but will it really make me a better teacher? What I really need is time to work in my room uninterrupted by anyone else. I need time to put things in my computer, time to sort out my materials for my upcoming units, time to just sit and think and breathe without a time deadline hanging over my head.
There's something else we're doing that day with technology, and all it sounds great, but a whole day devoted to it? We have one SMART board at my grade level and I've heard from a reliable source (its owner) that it doesn't always work well. Some people have wall-mounted flat screen TVs which look great but actually have a smaller screen so kids need to be right on top of it to see what's going on. Some of the new TVs have already burned up because we purchased them cheaply and that company is no longer in business. Technology in our building for the average teacher, especially in my world of fifth grade, is ridiculously behind the times compared to some other local schools.
Health-wise:
I'm complying and taking my meds, including my new directive to take 2000 IU of vitamin D3 daily and my multi-vitamin with iron. I have a bruise now from my hand IV insertion. I don't cry as much.
My hands, however, have been real problems for me for the last three days. They ache and hurt so by the end of the day that I can't hold my book up to read. I could barely hold a pen during the last half of the day yesterday and write. I had to write some notes home and it was so painful and my handwriting looked like scribbling. I felt awful that I couldn't do such an easy thing.
Food is still a problem. Sometimes I almost eat two meals a day and then I have to purge myself from dinner meal stuff every other evening. It's like I have to punish myself for allowing myself to eat and trying to feel.
I'm angry but don't show it so that's how anger comes out for me, literally. This is my old bad behavior rising to the surface. I'm angry that I still feel so overwhelmed at work even though I'm working harder than ever to get it all under control. I know my observation last week went well although I have not received my invite to go down and discuss it with my boss. I know I am working harder on the paperwork and getting things graded faster. I know I have made a kazillion sets of copies for the weeks and reading selections ahead. We've started preparing for the state test in Social Studies that is coming up in mid-November.
It all seems like we're on track but the special education teacher and I am amazed at the sheer lack of effort by many students. We keep track of names on giant chart paper along with missing work. It is usually filled with at least 7 names for each assignment. That is mind-boggling for me. I have 18 math students in the lower group with two assistants and 21 students in my other regular class sessions.
How is that so many people just don't do homework? I try to call home and most of the numbers don't work. I send home notes and they don't always come back. I stayed after school twice this week to force people to catch up on work and I only worked three days. I stayed on a Friday and I never stay after on Fridays. I still do not go to lunch and sometimes I don't even eat lunch because I am working and then we have an occasional meeting.
I'm tired but having trouble falling asleep most nights. I'm forcing myself to take my evening meds earlier and hoping that will be the trick in getting me to sleep. Here I am on a Saturday morning awake at 5:30 for no reason and I am tired.
My mind still gets muddled at work. Names and words and papers and answers get all mixed up. I try to cover myself but children are fabulous at pointing out every wrong thing I do, no matter how many wrong things they do.
My typing on here is atrocious. I sometimes miss words altogether, I spell things wrong and I have always been a super speller, and I type the beginning of one word and end it with the letters of the second word and I type the second word and finish it with the letters of the first word. Almost every other word I type now is wrong in one way or another until I go back and fix it.
Is at all better? Yes, slightly.
There are many times when I am home and I think about the whole Heath Ledger thing. Did he really overdose on purpose or did he just mix things and accidentally kill himself while trying to feel better?
I'm not saying I am going to do that. That is not my plan. I can understand completely how a person could be in such a place that they mix and match meds trying to feel better. I try to act like I am better but I still didn't answer the phone last night when my best friend from Maine called. I prefer not to talk to anyone because then you have to pretend.
It is easier now to pretend that all is wonderful in my work world, thanks to the med increases. I know I have to keep working now, no matter what. Maybe in the future I can afford a leave but I can't afford one now. Maybe Tysabri will work in the next few months. Maybe I will get that miracle I'm hoping for in my life.
All I know is that my hands are tired and I am tired so I need to end this. I know there are so many people out there much worse off than I am. I try to remind myself of this so I will buck up and stop b!tching. When that happens, you all will be among the first to know!
Thursday, October 2, 2008
Ahhhhctober
I survived Wednesday at school, but just barely with my nails scraping the end of my frayed rope. I got myself to my psych R.N. appointment and we jumped up the dosages on both my Wellbutrin XL (antidepressant) and my Xanax (anti-anxiety) to a level that should make most normal people feel human again.
Today was also my yearly teaching observation and that was first thing in the morning after the heavy med dosing. I was actually calm, cool, and collected while he was there. I got a thumbs up from my boss later on in the day at a meeting. I figure a smile and a thumbs up must mean the observation went okay so I will take it.
I'm sure that feeling better today is completely the placebo or psychological effect of jumping up these meds. I don't really care. All I know is that I did not cry today and boy, was that a nice flipping change.
So that brings us to work tomorrow and then I have taken Monday off to get away from that place where my soul has been sucked out of my body and be relaxed and ready for my first Tysabri infusion that afternoon.
The sun has actually come out here after some heavy rain this morning and this afternoon. It's really sunny but not hot so I can almost enjoy the minute or two I spend walking to and from my vehicle. I like to think the sun is a nice metaphor for my slowly healing soul and sense of peace.
Of course, I will keep you updated on all that. I'm hoping that things are going well in the world of you, my gentle readers, who always offer up the nicest and most positive comments. They really do help and I look forward to seeing what others have to say.
I have to clean the litter box now; make of that what you will.
Today was also my yearly teaching observation and that was first thing in the morning after the heavy med dosing. I was actually calm, cool, and collected while he was there. I got a thumbs up from my boss later on in the day at a meeting. I figure a smile and a thumbs up must mean the observation went okay so I will take it.
I'm sure that feeling better today is completely the placebo or psychological effect of jumping up these meds. I don't really care. All I know is that I did not cry today and boy, was that a nice flipping change.
So that brings us to work tomorrow and then I have taken Monday off to get away from that place where my soul has been sucked out of my body and be relaxed and ready for my first Tysabri infusion that afternoon.
The sun has actually come out here after some heavy rain this morning and this afternoon. It's really sunny but not hot so I can almost enjoy the minute or two I spend walking to and from my vehicle. I like to think the sun is a nice metaphor for my slowly healing soul and sense of peace.
Of course, I will keep you updated on all that. I'm hoping that things are going well in the world of you, my gentle readers, who always offer up the nicest and most positive comments. They really do help and I look forward to seeing what others have to say.
I have to clean the litter box now; make of that what you will.
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