This is my last day of freedom, dear readers. Tomorrow I go back to work for a full day. Then thankfully I have two days off and then I am back on a full-time schedule starting next week. If you are the praying kind, please feel free to send up a shout out for me. I feel like I need it.
I just came home from work a little while ago. I was putting in some freebie time cleaning and organizing. The kids seem a little louder than I remember from when I was teaching. I have to reteach all those rules and routines from September again. I even typed it all up on a handout. I don't want any arguments about the way we will be doing things. Most kids like routines anyway so most of them will be just fine.
Many of them are looking forward to me coming back. Of course, they barely had me before I went out on leave in November. It's been five and a half months since I've been working. I've seen the kiddos a few times since I've been out, including three times in April. They get me full on come May 1st. Better watch out my pretties.
Am I nervous? Of course, I am. I was all sweaty and hot while I was at work. We have no A/C there and it's about 70 degrees out. I am the kind of gal who needs a fan on whenever we hit about 70 or so.
Am I excited? Of course, I am. They are my kiddos after all. They started the school year with me and even though I haven't been there it is still Ms. B's desk and Ms. B's supplies and such. Kids can be possessive of things like that. Of course, they have used every crayon I had purchased and all my markers up but I can blame some of that on their substitute. He wasn't as mean errr tough with them on what they could and couldn't do.
So tomorrow is wake up at 5:30 and into the shower in a reasonable amount of time. I'll pack my lunch tonight and pick out my clothes. I get to watch Survivor tonight and I have a candy bar picked out for that. I'll chat with my friend LAP who lives in Maine. I'll be a basket case one moment and calm the next.
All I know is that I am going back and that it will be a good thing even though it's scary, too.
Thursday, April 30, 2009
Wednesday, April 29, 2009
Helping out another blogger
Attn: Creative people
I am looking to add a few new shirts to my product line....I am looking for a few good and clever MS ( Multiple Sclerosis) related sayings to put on shirts.
I want to have a contest so my readers can vote on them and the winner or winners will receive a free shirt. Sound good?
So if you are one of those creative and clever people who would like to win this contest, ( for bragging rights, of course) please email any ideas to info@themsshoppe.com.
I have a few ideas but I would love your input.
A few rules...Nothing religious, nothing political, nothing racist and no swear words ( or keep it to a minimum) LOL
Thanks for your help. I know some of you are very creative so let's get that the creative side of our brain going !
Rah rah rah !
Cathy
www.TheMSShoppe.com
(This is Weeble Girl again. Let me know what your cool ideas are too. I need something to make me laugh as I get ready for school again.)
Cathy's regular blog can be found at the following link below:
http://navigatingthejourneyofms.blogspot.com/
Tuesday, April 28, 2009
Biggest Loser?
Does anyone out there watch this show? I admit that it's one of my guilty pleasures and it's calorie-free, although I am eating a yogurt. I find the show inspirational on one hand but then unrealistic on the other.
I know they are changing people's lives because you can see it. Especially now when they're at the end of the competition. I'm amazed and my mind is boggled that some of the contestants have lost over 100 pounds in slightly more than four months.
In reality they tell you at places like Weight Watcher's that losing up to two pounds a week is a good rate. Does that mean the people on the show are set up for a let down when they go home? Back to real life doesn't usually mean you're exercising for an ungodly amount of hours each day. It usually means you go back to work and the chores of daily life and then you have to exercise on top of all that.
Seventeen weeks times two pounds per week = about 34 pounds. There are people on this show that have lost 112 pounds, 117 pounds, 132 pounds and more. Are you kidding me? No wonder that a past winner has gained all his weight back. Part of this show is based on unreality even though it works wonders.
Maybe that's why it doesn't spur me on to lose weight. I like to watch the changes of the contestants as this is a paid contest, let's not forget that. It's just not realistic.
I know they are changing people's lives because you can see it. Especially now when they're at the end of the competition. I'm amazed and my mind is boggled that some of the contestants have lost over 100 pounds in slightly more than four months.
In reality they tell you at places like Weight Watcher's that losing up to two pounds a week is a good rate. Does that mean the people on the show are set up for a let down when they go home? Back to real life doesn't usually mean you're exercising for an ungodly amount of hours each day. It usually means you go back to work and the chores of daily life and then you have to exercise on top of all that.
Seventeen weeks times two pounds per week = about 34 pounds. There are people on this show that have lost 112 pounds, 117 pounds, 132 pounds and more. Are you kidding me? No wonder that a past winner has gained all his weight back. Part of this show is based on unreality even though it works wonders.
Maybe that's why it doesn't spur me on to lose weight. I like to watch the changes of the contestants as this is a paid contest, let's not forget that. It's just not realistic.
Monday, April 27, 2009
The ABCs of me (and then some)
A - Age: 38 and some change
B - Bed size: Queen size bed which fits Franklin (the cat) and me rather nicely
C - Chore you hate: Okay, is the definition of a chore a difficult job? Then why would I like any of them? The worst is cleaning the bathroom and the litter box.
D - Dog's name: I don't have a dog just a wonder cat. I was married once and my wasband's name is Dennis.
E - Essential start your day item: Hmm? A shower I guess and morning meds.
F - Favorite color: Blue and green, the mixture of the lake when the winds are whipping it up a little. Sunshine yellow makes me smile.
G - Gold or Silver: Platinum baby
H - Height: 4'11 and 3/4" which I round to 5 feet
I - Instruments you play(ed): I played the flute for a few years in middle school and I was a dork in the marching band.
J - Job title: I get paid to teach both well-behaved and unruly children. In some of my free time I blog.
K - Kid(s): I have no kids of my own, again just a cat and a wasband who acted like he was about twelve sometimes. In my class there are 21 darlings waiting for me to come back on Friday.
L - Living arrangements: I am a singleton with Franklin the wonder cat
M - Mom's name: I call her Mom.
N - Nicknames: Weeble, Weebs, Velma (from Scooby Doo- the one with the glasses and short skirt)
O - Overnight hospital stay other than birth: I was an in-patient three different times on a mental health unit, some longer than others. I also spent three days in the hospital getting an MS diagnosis.
P - Pet Peeve: Bad drivers, ineffective workers, and dolts.
Q - Quote from a movie: "Do or do not. There is no try." Yoda
R - Right or left handed: Right handed so I'm working with my left brain which could explain a lot.
S - Siblings: 1 brother and sister I grew up with. In my bio-dad's family I have one sister and two brothers.
T - Time you wake up: Varied daily while I was out of work for five months. Come Friday it will be about 5:30 a.m.
U- Underwear: I'm not pulling a Meredith Vieira. I wear it.
V - Vegetable you dislike: Mushy peas are gross.
W - Ways you run late: I don't usually run late for the important stuff. But, it could be traffic, low on gas and need to fill up, or I got lost.
X-rays you've had: Chest x-rays, CT scans, and MRIs
Y - Yummy food you make: Lasagna, brownies, and deviled eggs
Z - Zoo favorite: Penguins
B - Bed size: Queen size bed which fits Franklin (the cat) and me rather nicely
C - Chore you hate: Okay, is the definition of a chore a difficult job? Then why would I like any of them? The worst is cleaning the bathroom and the litter box.
D - Dog's name: I don't have a dog just a wonder cat. I was married once and my wasband's name is Dennis.
E - Essential start your day item: Hmm? A shower I guess and morning meds.
F - Favorite color: Blue and green, the mixture of the lake when the winds are whipping it up a little. Sunshine yellow makes me smile.
G - Gold or Silver: Platinum baby
H - Height: 4'11 and 3/4" which I round to 5 feet
I - Instruments you play(ed): I played the flute for a few years in middle school and I was a dork in the marching band.
J - Job title: I get paid to teach both well-behaved and unruly children. In some of my free time I blog.
K - Kid(s): I have no kids of my own, again just a cat and a wasband who acted like he was about twelve sometimes. In my class there are 21 darlings waiting for me to come back on Friday.
L - Living arrangements: I am a singleton with Franklin the wonder cat
M - Mom's name: I call her Mom.
N - Nicknames: Weeble, Weebs, Velma (from Scooby Doo- the one with the glasses and short skirt)
O - Overnight hospital stay other than birth: I was an in-patient three different times on a mental health unit, some longer than others. I also spent three days in the hospital getting an MS diagnosis.
P - Pet Peeve: Bad drivers, ineffective workers, and dolts.
Q - Quote from a movie: "Do or do not. There is no try." Yoda
R - Right or left handed: Right handed so I'm working with my left brain which could explain a lot.
S - Siblings: 1 brother and sister I grew up with. In my bio-dad's family I have one sister and two brothers.
T - Time you wake up: Varied daily while I was out of work for five months. Come Friday it will be about 5:30 a.m.
U- Underwear: I'm not pulling a Meredith Vieira. I wear it.
V - Vegetable you dislike: Mushy peas are gross.
W - Ways you run late: I don't usually run late for the important stuff. But, it could be traffic, low on gas and need to fill up, or I got lost.
X-rays you've had: Chest x-rays, CT scans, and MRIs
Y - Yummy food you make: Lasagna, brownies, and deviled eggs
Z - Zoo favorite: Penguins
Sunday, April 26, 2009
Ramblings
Work aka School
I went to school on Friday and worked for about four hours. I got my computer and copier passwords restored and looked up some information for my going back to work on Friday. Right this moment it's freaking me out so I imagine that on Thursday evening I'm going to be needing every bit of Xanax I can get my hands on.
I saw the kids for a few minutes as it was a half day for conferences (I'm sooooooo sad I missed P-T conferences. NOT!) Then I went to work in between my sub's two conferences for the afternoon. I organized some papers, threw some stuff out, cleaned a teensy bit, and sent out more papers for copies. I also started writing up my Friday lesson plans. My FRIDAY plans. Oh my gosh, those 5 months went quickly. If you're a praying sort, please pray for me. I know it will be FINE when I get there and drop the Iron Curtain but it seems so nerve-wracking rightatthismoment.
Weather
It's been hotter than normal here which is something my body no longer really enjoys. Yesterday, I slept on and off through 6 p.m. and avoided most of the heat. It was supposed to be in the 80s and my MS just last year started to turn on me when it got warmer. Then again I was awake at 3 a.m. and went grocery shopping. Yes, that was 3 in the morning. There were three teenagery types in the store plus me and no waiting in line. Yippee.
Today was only about 60 degrees according to my car. Tolerable. Tomorrow is supposed to be mid-80s. Are you kidding me? This is the end of April and it's central NY where it just snowed two weeks ago. Two weeks ago.
Social gathering aka Food Party
Today I attended a Tastefully Simple (aka Sinful because their stuff is so yummy) party. It's basically a chance for a gaggle of women to get together and eat their brains out as they taste test 22 different items. (Yes, that was twenty-two items! Yummo) My favorite was the almond cake with blackberry preserves mixed in. That was heaven in a bite.
My least fave was the blue cheese dip. I just can't get into blue cheese. Never have and most likely never will. I also wasn't a big fan of their taco type items. Sorry BJM, I know you like that stuff.
Drum roll............ I also partook of a wine slushie at the fiesta. This was the first bit of alcohol in a long time. It was pretty good even though I am not much of a wine drinker (or any other kind of drinker either).
I had a fun time with BJM and some of her family and friends. I pretty much knew everyone and I ordered some things that will require either mixing and/or baking. Bet you thought I couldn't do that, did you? I can, I just don't.
Other stuff
I do have Tysabri #8 coming up on Tuesday so I can sneak that in right before I have to go back to work. That's one less day I'll have to take off without pay for now so I'm delighted. I hope I will only have to take one day off in May to get it done and June should find us out of school before that next one is due.
I have no idea what else to say so this is it.
I went to school on Friday and worked for about four hours. I got my computer and copier passwords restored and looked up some information for my going back to work on Friday. Right this moment it's freaking me out so I imagine that on Thursday evening I'm going to be needing every bit of Xanax I can get my hands on.
I saw the kids for a few minutes as it was a half day for conferences (I'm sooooooo sad I missed P-T conferences. NOT!) Then I went to work in between my sub's two conferences for the afternoon. I organized some papers, threw some stuff out, cleaned a teensy bit, and sent out more papers for copies. I also started writing up my Friday lesson plans. My FRIDAY plans. Oh my gosh, those 5 months went quickly. If you're a praying sort, please pray for me. I know it will be FINE when I get there and drop the Iron Curtain but it seems so nerve-wracking rightatthismoment.
Weather
It's been hotter than normal here which is something my body no longer really enjoys. Yesterday, I slept on and off through 6 p.m. and avoided most of the heat. It was supposed to be in the 80s and my MS just last year started to turn on me when it got warmer. Then again I was awake at 3 a.m. and went grocery shopping. Yes, that was 3 in the morning. There were three teenagery types in the store plus me and no waiting in line. Yippee.
Today was only about 60 degrees according to my car. Tolerable. Tomorrow is supposed to be mid-80s. Are you kidding me? This is the end of April and it's central NY where it just snowed two weeks ago. Two weeks ago.
Social gathering aka Food Party
Today I attended a Tastefully Simple (aka Sinful because their stuff is so yummy) party. It's basically a chance for a gaggle of women to get together and eat their brains out as they taste test 22 different items. (Yes, that was twenty-two items! Yummo) My favorite was the almond cake with blackberry preserves mixed in. That was heaven in a bite.
My least fave was the blue cheese dip. I just can't get into blue cheese. Never have and most likely never will. I also wasn't a big fan of their taco type items. Sorry BJM, I know you like that stuff.
Drum roll............ I also partook of a wine slushie at the fiesta. This was the first bit of alcohol in a long time. It was pretty good even though I am not much of a wine drinker (or any other kind of drinker either).
I had a fun time with BJM and some of her family and friends. I pretty much knew everyone and I ordered some things that will require either mixing and/or baking. Bet you thought I couldn't do that, did you? I can, I just don't.
Other stuff
I do have Tysabri #8 coming up on Tuesday so I can sneak that in right before I have to go back to work. That's one less day I'll have to take off without pay for now so I'm delighted. I hope I will only have to take one day off in May to get it done and June should find us out of school before that next one is due.
I have no idea what else to say so this is it.
Thursday, April 23, 2009
Waiting out the weight
Isn't it odd that the homonyms weight and wait are both things that can irritate us? Most women, even the gorgeous ones, have issues with their weight. And who likes to wait for things? Waiting for the doctor, or a late friend, or waiting for the green light on the day you left the house a few minutes later than normal... You get the idea.
I wonder why so many women in this country have weight issues? Is it really due to models and TV shows and the fact that "bad" food tastes good and is usually cheaper than the "good" food? By all rights I shouldn't be fat. I mean I was an excellent bulimic for years and kept my weight down between healthy and unhealthy. I purged my way to a slender body with great leg muscles from all the running I did. I could purge with the best of them and did in high school and college.
Yet here I am, very overweight, even the O word and I don't mean Oprah.
I have been seeing a nutritionist and that's not working for me. There are things holding me back from losing the extra lbs. I've talked about some of this before. Intimacy issues, family issues, and self esteem issues. Many of my friends seem to really like me so why don't I like me enough to get rid of the weight?
I'm talking this through with my super therapist who I have been seeing for almost nine years now. Yeah, I've had that much crap that I have needed to weed through. He's good though and I wouldn't trade him for the world. We have an excellent rapport and there isn't much, if anything, that I hold back from him.
But when will I like me? I eat to comfort and soothe myself because I don't like myself very much. Then I have this barrier/safety blanket around me so that if other people don't like me, it can bounce right off the fat and I don't have to think about it. I figure if I don't like me, then most other people won't either. If I look fat and unlikeable then I am unlikeable to others. It's a way of pushing people away, especially men.
Most of you have read about my wasband and the abuse I suffered at his hands. After him I went from man to man to man, countless men to numb the pain from one. I was heavier then but not like this. I used my body to connect with men and let them use me. The few relationships I had would last only 6 months and then I was back on the man-wagon. I was addicted to being in a relationship or dating, often seeing two men on the same night. I thought I was using them but in reality they were using me.
There's family issues, feelings of abandonment, feelings of failure, feelings of never being good enough. I grew up chubby and was quieted at my grandparent's house with food when I cried for my mother. (I lived with them and my mother when I was very young.) I remember my grandfather yelling at my grandmother to shut me up by feeding me. This must have been about three or four years old. A powerful message to learn so young.
There's lots of reasons I am holding on to the fat. Now I want to supplant food with other things, positive things, things that I can do that show I like myself. Some of the things I do is come here and write and get my story out. Another thing I do is call my friends and talk to them about things but the two of them are getting worn out by me, I think. Thanks BJM and LAP. I'm trying to live more in the now than in the what could or might happen to me. I am trying to acknowledge feelings more and deal with them.
I still like my goodies though. I know lots of you out there have dealt with weight issues or are dealing with them now. How do you move past the danger zone into the light? What do you do to soothe and comfort yourself? I'm looking for any suggestions that you have.
It's time to share, if you dare! Help me out with your stories and I'll keep writing as I process it all.
I wonder why so many women in this country have weight issues? Is it really due to models and TV shows and the fact that "bad" food tastes good and is usually cheaper than the "good" food? By all rights I shouldn't be fat. I mean I was an excellent bulimic for years and kept my weight down between healthy and unhealthy. I purged my way to a slender body with great leg muscles from all the running I did. I could purge with the best of them and did in high school and college.
Yet here I am, very overweight, even the O word and I don't mean Oprah.
I have been seeing a nutritionist and that's not working for me. There are things holding me back from losing the extra lbs. I've talked about some of this before. Intimacy issues, family issues, and self esteem issues. Many of my friends seem to really like me so why don't I like me enough to get rid of the weight?
I'm talking this through with my super therapist who I have been seeing for almost nine years now. Yeah, I've had that much crap that I have needed to weed through. He's good though and I wouldn't trade him for the world. We have an excellent rapport and there isn't much, if anything, that I hold back from him.
But when will I like me? I eat to comfort and soothe myself because I don't like myself very much. Then I have this barrier/safety blanket around me so that if other people don't like me, it can bounce right off the fat and I don't have to think about it. I figure if I don't like me, then most other people won't either. If I look fat and unlikeable then I am unlikeable to others. It's a way of pushing people away, especially men.
Most of you have read about my wasband and the abuse I suffered at his hands. After him I went from man to man to man, countless men to numb the pain from one. I was heavier then but not like this. I used my body to connect with men and let them use me. The few relationships I had would last only 6 months and then I was back on the man-wagon. I was addicted to being in a relationship or dating, often seeing two men on the same night. I thought I was using them but in reality they were using me.
There's family issues, feelings of abandonment, feelings of failure, feelings of never being good enough. I grew up chubby and was quieted at my grandparent's house with food when I cried for my mother. (I lived with them and my mother when I was very young.) I remember my grandfather yelling at my grandmother to shut me up by feeding me. This must have been about three or four years old. A powerful message to learn so young.
There's lots of reasons I am holding on to the fat. Now I want to supplant food with other things, positive things, things that I can do that show I like myself. Some of the things I do is come here and write and get my story out. Another thing I do is call my friends and talk to them about things but the two of them are getting worn out by me, I think. Thanks BJM and LAP. I'm trying to live more in the now than in the what could or might happen to me. I am trying to acknowledge feelings more and deal with them.
I still like my goodies though. I know lots of you out there have dealt with weight issues or are dealing with them now. How do you move past the danger zone into the light? What do you do to soothe and comfort yourself? I'm looking for any suggestions that you have.
It's time to share, if you dare! Help me out with your stories and I'll keep writing as I process it all.
Tuesday, April 21, 2009
The visit: a quickie
Today was the day I was supposed to go to my bio-dad's alone to see my half-sister, KH. I almost didn't go as I was nervous and very tired this afternoon but I went. I'm a big girl now.
I drove myself there and spent over three hours there just talking, playing with kitties, and looking at some really old pictures (some over 100 years old).
I haven't seen my sister since about 1995 so that means it's been almost 14 years since we last saw each other. We used to work together all those years ago and I wasn't sure then if she knew we were related.
So I did it and my therapist is going to about pee himself when he learns that I have been at bio-dad's twice now since our last therapy visit.
I'm so tired so this is all for now. A quickie report but a positive one methinks!
I drove myself there and spent over three hours there just talking, playing with kitties, and looking at some really old pictures (some over 100 years old).
I haven't seen my sister since about 1995 so that means it's been almost 14 years since we last saw each other. We used to work together all those years ago and I wasn't sure then if she knew we were related.
So I did it and my therapist is going to about pee himself when he learns that I have been at bio-dad's twice now since our last therapy visit.
I'm so tired so this is all for now. A quickie report but a positive one methinks!
Sunday, April 19, 2009
Sunday nights and other stuff
Okay, I only have two more Sundays (including tonight) before I have to go back to work full-time. I go back on May 1 which is a Friday so that doesn't count as a full week. The best part of Sunday nights is watching The Amazing Race. It's a great show where teams of two people travel all over the world (and I do mean all over the world, except for Antarctica) performing certain tasks while trying to be the first to complete them so they aren't eliminated. (The last team to arrive may be eliminated.)
You get to see places that you'll most likely never see and you don't need to get a dumb passport picture taken. It's one hour, including commercials, where you get to see how smart or how not smart people are as they try to complete various tasks. It's like a nicer and cleaner Survivor but they are traveling non-stop. I have to tell you that there are no sports interrupting it tonight so it will start in just a few minutes. Yippee.
Other news
I left the house today with my friend LF and we went to A.C. Moore and I bought a few things for work. Big purchase was name tags for their desks. The kids hate them but they are super valuable when you're moving desks. It's also handy for subs and for marking people absent which I have the kiddos do.
More other news
My half-sister has asked me to go to bio-dad's house on Tuesday to see her. She's there overnight from Monday to Tuesday. I am going. That means more news later on this week. I'm scared to go by myself but I am going. Talk about stepping outside your safety zone.
You get to see places that you'll most likely never see and you don't need to get a dumb passport picture taken. It's one hour, including commercials, where you get to see how smart or how not smart people are as they try to complete various tasks. It's like a nicer and cleaner Survivor but they are traveling non-stop. I have to tell you that there are no sports interrupting it tonight so it will start in just a few minutes. Yippee.
Other news
I left the house today with my friend LF and we went to A.C. Moore and I bought a few things for work. Big purchase was name tags for their desks. The kids hate them but they are super valuable when you're moving desks. It's also handy for subs and for marking people absent which I have the kiddos do.
More other news
My half-sister has asked me to go to bio-dad's house on Tuesday to see her. She's there overnight from Monday to Tuesday. I am going. That means more news later on this week. I'm scared to go by myself but I am going. Talk about stepping outside your safety zone.
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?
Wednesday, April 15, 2009
Me vs. Tysabri and other stuff
I called the insurance company this morning and was put on hold for 20 minutes after being switched from one place to another and originally got nowhere. Then I called back and tried some place new in insurance hell and got someone who still put me on hold but who did find an error in my latest EOB. Yippee for me!
This means I don't pay the March bill yet until I get a new EOB with the right figures on it. It also means that I may, repeat may, not have to pay anymore for the Tysabri. That would be great because otherwise I'll be paying $1065.73 for three infusions and that's a thousand dollars that were already being spent on other bills.
I'm still not quite sure what was wrong with the bill because "insurancespeak" is a language I don't know or seem to understand. All I know is that this drug is supposed to be covered and I am just trying to figure out how much I have to pay before insurance fully covers it. Let's all hope it's soon.
I know I'm lucky enough to have a job and good insurance and be allowed to receive Tysabri. I'm trying not to complain too much because I know lots of MSers (anecdotally) who don't have those items working in their favor. I just wish I could afford this medicine more easily.
Other stuff
My dad has his surgery scheduled for May 4th. Now they think he might not even need to stay overnight! Amazing, huh?
More other stuff
I wrote my letter to the superintendent today stating that I am coming back to work on May 1st. I only have two release notes from medical providers as I suspect the third is taking an extended vacation that coincides with Spring break. But, the letter is written and enveloped (I just made that word up! Wait, spell check didn't catch it, so it must be a real word. Major bummer.) and ready for tomorrow's mail.
More other other stuff
There's someone out there who sends me cards occasionally with a lottery scratch off ticket inside. You know who you are, silent reader. I just wanted to publicly say thanks for the cards and the support. I just won $8 thanks to you. I'm a winner!
More and more other stuff
It's a good thing I'm not seeing Mr. Skinny Pants Nutritionist any time soon. I am still under the wagon even though I keep saying I'm going to duct tape myself back to the wagon. It's like I drag myself up on the rope of good intentions and then fall back under the moving wheels. I have permanent wheel tracks squished over my big body.
When will I wrap my mind around the idea that being thin is okay and safe? I know I need to do this for health reasons but my mind wants to hold on to the weight for lots of personal reasons such as safety, a barrier between myself and others, and a way to keep myself pushed away from intimacy (which doesn't always mean $ex folks!). Maybe I need to explore this more in future posts.
That's all I've got for now. Weebs
This means I don't pay the March bill yet until I get a new EOB with the right figures on it. It also means that I may, repeat may, not have to pay anymore for the Tysabri. That would be great because otherwise I'll be paying $1065.73 for three infusions and that's a thousand dollars that were already being spent on other bills.
I'm still not quite sure what was wrong with the bill because "insurancespeak" is a language I don't know or seem to understand. All I know is that this drug is supposed to be covered and I am just trying to figure out how much I have to pay before insurance fully covers it. Let's all hope it's soon.
I know I'm lucky enough to have a job and good insurance and be allowed to receive Tysabri. I'm trying not to complain too much because I know lots of MSers (anecdotally) who don't have those items working in their favor. I just wish I could afford this medicine more easily.
Other stuff
My dad has his surgery scheduled for May 4th. Now they think he might not even need to stay overnight! Amazing, huh?
More other stuff
I wrote my letter to the superintendent today stating that I am coming back to work on May 1st. I only have two release notes from medical providers as I suspect the third is taking an extended vacation that coincides with Spring break. But, the letter is written and enveloped (I just made that word up! Wait, spell check didn't catch it, so it must be a real word. Major bummer.) and ready for tomorrow's mail.
More other other stuff
There's someone out there who sends me cards occasionally with a lottery scratch off ticket inside. You know who you are, silent reader. I just wanted to publicly say thanks for the cards and the support. I just won $8 thanks to you. I'm a winner!
More and more other stuff
It's a good thing I'm not seeing Mr. Skinny Pants Nutritionist any time soon. I am still under the wagon even though I keep saying I'm going to duct tape myself back to the wagon. It's like I drag myself up on the rope of good intentions and then fall back under the moving wheels. I have permanent wheel tracks squished over my big body.
When will I wrap my mind around the idea that being thin is okay and safe? I know I need to do this for health reasons but my mind wants to hold on to the weight for lots of personal reasons such as safety, a barrier between myself and others, and a way to keep myself pushed away from intimacy (which doesn't always mean $ex folks!). Maybe I need to explore this more in future posts.
That's all I've got for now. Weebs
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.
Monday, April 13, 2009
To post, but what about?
I feel the need to put something down here because it's been several days since I've made an appearance on the blog. So what should I write about?
Easter
It's come and gone for another year and I went to my parents' to celebrate the holiday. I had the opportunity to Facebook chat with my brother who is still in Iraq in the morning. My sister who is stationed at Ft. Campbell, KY called in the afternoon. I was the lucky recipient of an Easter basket with a solid chocolate bunny, some Reese's peanut butter eggs, and some scratch off lottery tickets. I don't usually get a basket but had requested a small one and my wish came true.
I called bio-dad in the evening and capped the day off with the latest episode of the "Amazing Race".
Other stuff
I have about three weeks before I go back to work. I am both delighted and concerned that my "free time" is coming to an end. I even had a frightmare today about my class behaving in a terrible way and not listening to me. I have the what if's. What if I mess up? What if I can't handle it? What if, what if, what if? What if I am fabulous?
More other stuff
Today's chores included doing a load of laundry. The washer is located outside my door in the basement. It started out like any other load of laundry with the detergent and the clothes and the machine. Then something went bad, terribly, horribly bad. The darned thing wouldn't drain and spin dry my clothes!
Zoinks! That left me with an open washer filled to the brim with water and clothes. I had to reach in and pull the water-logged items out and try to wring them out the best I could. Then I had to make two trips with slightly less water-logged clothing items over to another building so I could use that washer.
And I was vanquished as this time this other machine performed its draining and spin drying cycle. Of course this required me to make another trip to get the laundry to put into the dryer in my own apartment building but I finished the laundry.
Yes, you read that correctly. I finished the laundry!
That's all I've got for now. Weebs
Easter
It's come and gone for another year and I went to my parents' to celebrate the holiday. I had the opportunity to Facebook chat with my brother who is still in Iraq in the morning. My sister who is stationed at Ft. Campbell, KY called in the afternoon. I was the lucky recipient of an Easter basket with a solid chocolate bunny, some Reese's peanut butter eggs, and some scratch off lottery tickets. I don't usually get a basket but had requested a small one and my wish came true.
I called bio-dad in the evening and capped the day off with the latest episode of the "Amazing Race".
Other stuff
I have about three weeks before I go back to work. I am both delighted and concerned that my "free time" is coming to an end. I even had a frightmare today about my class behaving in a terrible way and not listening to me. I have the what if's. What if I mess up? What if I can't handle it? What if, what if, what if? What if I am fabulous?
More other stuff
Today's chores included doing a load of laundry. The washer is located outside my door in the basement. It started out like any other load of laundry with the detergent and the clothes and the machine. Then something went bad, terribly, horribly bad. The darned thing wouldn't drain and spin dry my clothes!
Zoinks! That left me with an open washer filled to the brim with water and clothes. I had to reach in and pull the water-logged items out and try to wring them out the best I could. Then I had to make two trips with slightly less water-logged clothing items over to another building so I could use that washer.
And I was vanquished as this time this other machine performed its draining and spin drying cycle. Of course this required me to make another trip to get the laundry to put into the dryer in my own apartment building but I finished the laundry.
Yes, you read that correctly. I finished the laundry!
That's all I've got for now. Weebs
Thursday, April 9, 2009
Back to school, for a visit
Yesterday was a nice back to school visit. I had lunch with most of my students (3 opted out and 2 were absent) and I passed out Easter eggs with tiny candies in them. As I was walking towards the building some of my kiddos were outside playing because they had been extra good and they caught me sneaking in. A bunch of the girls came running over to hug me and shouted my name. That was a good feeling, nay a great feeling.
I haven't been back to visit since right before Christmas so I was worried that they may have lost their enthusiasm for me. Not so, dear readers. When I walked into the class the excitement was palpable and I heard my name, felt more hugs, and saw kiddos waving to me. It was truly a nice way to work myself back into the classroom for 1 May.
The kiddos were already excited because it was the day before Spring Break. Then we had lunch which is a GIANT treat that I never bestow upon my students. I love them most of the time but let me eat lunch with other grownups please! I need a break from small people in the middle of the day.
I worked the rest of the afternoon in the class and stopped by the library to request some books for my room as the kiddos are getting ready to start a project on countries in South America. I gathered papers to send out for copies of things I would need for Mexico and Central America. I finished quite a bit for a gal whose not even back to work yet.
I'm also in the process of getting release notes from my three medical providers so that I can go back to school officially. Right now I am so excited about it but I must also admit I have nightmares where I go back and the kiddos are out of control and I'm screaming at them and they don't listen. That never happens in real life but I have the dreams anyway.
That's it for now. Happy Passover or upcoming Easter, if you celebrate.
Hugs, Weebs
I haven't been back to visit since right before Christmas so I was worried that they may have lost their enthusiasm for me. Not so, dear readers. When I walked into the class the excitement was palpable and I heard my name, felt more hugs, and saw kiddos waving to me. It was truly a nice way to work myself back into the classroom for 1 May.
The kiddos were already excited because it was the day before Spring Break. Then we had lunch which is a GIANT treat that I never bestow upon my students. I love them most of the time but let me eat lunch with other grownups please! I need a break from small people in the middle of the day.
I worked the rest of the afternoon in the class and stopped by the library to request some books for my room as the kiddos are getting ready to start a project on countries in South America. I gathered papers to send out for copies of things I would need for Mexico and Central America. I finished quite a bit for a gal whose not even back to work yet.
I'm also in the process of getting release notes from my three medical providers so that I can go back to school officially. Right now I am so excited about it but I must also admit I have nightmares where I go back and the kiddos are out of control and I'm screaming at them and they don't listen. That never happens in real life but I have the dreams anyway.
That's it for now. Happy Passover or upcoming Easter, if you celebrate.
Hugs, Weebs
Tuesday, April 7, 2009
Updates and miscellany
The reunion
I have sent in my money to save my spot for my twentieth high school reunion. Now I feel better having sent in my reservation but I know I still have the option to back out. I am at about a fifty-fifty on whether I'll attend or not. Perhaps I will go because I have taken the first step. I have until July to decide.
The nutritionist
I have not been following my food plan in the slightest since I saw him two weeks ago. I am slowly putting myself back on the wagon. One of the things I really need to do is to write down nightly meal plans so I don't catch myself unaware and hungry in the evening. I am working on more veggies being added into my meals. I have been eating my green beans at night followed by sips of water to choke them down. I may not like them but I am eating them/swallowing them.
Bio-dad
I called my step-mother last night and thanked her for letting us come over (us meaning BJM and myself). We had a nice chat while my dad was out doing his chores on the farm. I'll probably call him tonight and see how he is recovering from our Sunday visit.
Adoptive dad
He's still recovering from the 18 days in the hospital in late January/early February. He wears a special vest 24/7, except when he showers, that gongs and dings and will shock him in the event of his heart not working correctly. He has been having problems with his breathing lately as in being short of breath. He is having a chest x-ray done today and they have doubled his Lasix (spelling?) to a really high dose. It's a diuretic.
He also has an infection in a tooth so they have to watch that while he's on his antibiotic. My mom called me at 6:30 this morning to tell me about my dad. Needless to type, she is worried about him.
Me
I am going to get freshly cut and coiffed in about an hour. There is also snow here. Flipping SNOW in April. It's not a lot of precipitation but it's cold and I'll have to warm up the car. I'm sleepy and want a nap but what else is new.
I have sent in my money to save my spot for my twentieth high school reunion. Now I feel better having sent in my reservation but I know I still have the option to back out. I am at about a fifty-fifty on whether I'll attend or not. Perhaps I will go because I have taken the first step. I have until July to decide.
The nutritionist
I have not been following my food plan in the slightest since I saw him two weeks ago. I am slowly putting myself back on the wagon. One of the things I really need to do is to write down nightly meal plans so I don't catch myself unaware and hungry in the evening. I am working on more veggies being added into my meals. I have been eating my green beans at night followed by sips of water to choke them down. I may not like them but I am eating them/swallowing them.
Bio-dad
I called my step-mother last night and thanked her for letting us come over (us meaning BJM and myself). We had a nice chat while my dad was out doing his chores on the farm. I'll probably call him tonight and see how he is recovering from our Sunday visit.
Adoptive dad
He's still recovering from the 18 days in the hospital in late January/early February. He wears a special vest 24/7, except when he showers, that gongs and dings and will shock him in the event of his heart not working correctly. He has been having problems with his breathing lately as in being short of breath. He is having a chest x-ray done today and they have doubled his Lasix (spelling?) to a really high dose. It's a diuretic.
He also has an infection in a tooth so they have to watch that while he's on his antibiotic. My mom called me at 6:30 this morning to tell me about my dad. Needless to type, she is worried about him.
Me
I am going to get freshly cut and coiffed in about an hour. There is also snow here. Flipping SNOW in April. It's not a lot of precipitation but it's cold and I'll have to warm up the car. I'm sleepy and want a nap but what else is new.
Monday, April 6, 2009
Deconstructing bio-dad
Sunday was a big day for me, a huge day actually. I went to see my bio-dad with my trusty friend BJM. This was the first time I've seen my bio-dad in about eight years. The last time I saw him I freaked out afterward because I wasn't used to him and the idea that he wanted to really get to know me. So I backed away and only recently started talking to him on the phone again.
This time, eight years later, I was in a much more secure place in my life. My mother has some pretty intense feelings that she still holds against my bio-dad but I am over the fact that she hates him. I'm past the idea that she might be angry with me if she knew that I saw him. This time it's about me establishing a relationship with my b-d (bio-dad) for me. It's not about going against my mother or trying to hurt her, it's about me trying to make more sense of my life.
When we arrived my aunt Nancy was there. She stayed for a long time talking about her family while I waited for my b-d to be free to talk to me. Thank goodness for BJM who kept me company while we waited. I also talked to my step-mother (is that what she is?) while we waited for Aunt N to leave.
I also met my Uncle Jimmy at the end of the visit. He's a character and from what I saw, I liked him.
BJM noticed that I looked like my dad, especially my nose and eyes. She said that when he talked it was like looking at my face. I smiled a lot and I think he did also.
It's so weird to know that this man is related to me and he bizarrely thinks I'm perfect, no matter what. I'm not used to this kind of unconditional acceptance. I finally feel like I am opening up to learning more about myself, my past, and my father.
It was liberating to go there and just talk to him about anything. There were no hard feelings on his part toward my mother. It has been almost forty years now.
There's more that could probably be written but some of it is still being digested at the moment. I'm picturing the inside of my head like a dryer where things are twirling around, getting at the top and falling down to start twirling all over again.
I do know I feel positive and hopeful after the trip yesterday. That's a good thing.
This time, eight years later, I was in a much more secure place in my life. My mother has some pretty intense feelings that she still holds against my bio-dad but I am over the fact that she hates him. I'm past the idea that she might be angry with me if she knew that I saw him. This time it's about me establishing a relationship with my b-d (bio-dad) for me. It's not about going against my mother or trying to hurt her, it's about me trying to make more sense of my life.
When we arrived my aunt Nancy was there. She stayed for a long time talking about her family while I waited for my b-d to be free to talk to me. Thank goodness for BJM who kept me company while we waited. I also talked to my step-mother (is that what she is?) while we waited for Aunt N to leave.
I also met my Uncle Jimmy at the end of the visit. He's a character and from what I saw, I liked him.
BJM noticed that I looked like my dad, especially my nose and eyes. She said that when he talked it was like looking at my face. I smiled a lot and I think he did also.
It's so weird to know that this man is related to me and he bizarrely thinks I'm perfect, no matter what. I'm not used to this kind of unconditional acceptance. I finally feel like I am opening up to learning more about myself, my past, and my father.
It was liberating to go there and just talk to him about anything. There were no hard feelings on his part toward my mother. It has been almost forty years now.
There's more that could probably be written but some of it is still being digested at the moment. I'm picturing the inside of my head like a dryer where things are twirling around, getting at the top and falling down to start twirling all over again.
I do know I feel positive and hopeful after the trip yesterday. That's a good thing.
Sunday, April 5, 2009
Quickie update
I'll write more at a later time but the day with my bio-dad went very well. My friend BJM went with me as the security blanket to my Linus.
Just wanted to throw out this as an update for those three inquiring minds who wanted to know.
Just wanted to throw out this as an update for those three inquiring minds who wanted to know.
Saturday, April 4, 2009
Off to see my bio-dad
Some of you who read this may be familiar with my family structure. Others are not. So in fairness to everyone I'll bore you all as I go through my family tree as quickly as I can.
I have one mother. Duh!
She got pregnant with me when she was a senior in high school. Before she gave birth to me she married my biological-dad aka bio-dad. They stayed married for a short time. He went to Germany instead of Vietnam in the service. She decided the romance was over with a dear John letter. They split up and got an annulment, per my mother's wishes.
My mother met another man who just happened to rent a trailer on my bio-dad's dad's land. (That would make the landowner my paternal bio-grandfather.) They got together somehow some way murkily in the time line.
My mother remarried (or married for the first real time according to the annulment) the man she met who rented a trailer from my bio-dad's dad's land. My bio-dad signed papers that gave up all rights to me per my mother's wishes. He thought it over for a long time before he signed them but he believed he was doing the right thing.
So I have two dads: my bio-dad and my adoptive dad whose last name I took when my mother married.
My bio-dad and I are going to meet again tomorrow after a brief meeting eight years ago. Before that meeting eight years ago I hadn't seen him since I was a toddler. Needless to say, my mother never told me about my bio-dad until I was in 6th grade. I knew about him long before she told me because I had ears and eyes and I heard things and read things. I also could add and remembered being in my parents' wedding in 1975.
So I grew up with one family where I have a younger half-brother and half-sister biologically. I don't look much like them as they are tall and thin. Curses for me in the genetic gene pool lottery.
I also have another "family" through my bio-dad. He remarried and I have another half-sister and two half-brothers biologically. I spent most of my life feeling as if no one wanted me because my father signed me away and had nothing to do with me. I also had a feeling of abandonment or not being good enough even in my own family as I was growing up. When my mother was angry or displeased with me, which was often, she wouldn't always treat me very nicely. Let's just say I grew up with low self esteem, extreme shyness, and weight issues. (Funny, I still have two out of three of those issues still today.)
My mother doesn't talk about my bio-dad EVER. There are no pictures of me in the house as a baby, no baby book even though I was the first and most people are rigorous about writing and detailing what the first-born did. I'm not allowed to ask about my dad because I have been told that "it's not my business." There is some bad blood there between my mother and my bio-dad. There's not any from him to her because it's been so long in time. I guess my mother is really good at holding a grudge or trying to punish other people.
Most people who do know me don't know this story. It's one that is supposed to stay hidden but I am tired of trying to play the good girl even though it's an impossible role. I'm putting it out here so it's not hidden anymore. I'm doing what I said when I started this blog; I'm exposing the messy stuff to the light so that it loses its power over me.
Tomorrow I am going to see my bio-dad and I'm not going to feel bad about it.
I have one mother. Duh!
She got pregnant with me when she was a senior in high school. Before she gave birth to me she married my biological-dad aka bio-dad. They stayed married for a short time. He went to Germany instead of Vietnam in the service. She decided the romance was over with a dear John letter. They split up and got an annulment, per my mother's wishes.
My mother met another man who just happened to rent a trailer on my bio-dad's dad's land. (That would make the landowner my paternal bio-grandfather.) They got together somehow some way murkily in the time line.
My mother remarried (or married for the first real time according to the annulment) the man she met who rented a trailer from my bio-dad's dad's land. My bio-dad signed papers that gave up all rights to me per my mother's wishes. He thought it over for a long time before he signed them but he believed he was doing the right thing.
So I have two dads: my bio-dad and my adoptive dad whose last name I took when my mother married.
My bio-dad and I are going to meet again tomorrow after a brief meeting eight years ago. Before that meeting eight years ago I hadn't seen him since I was a toddler. Needless to say, my mother never told me about my bio-dad until I was in 6th grade. I knew about him long before she told me because I had ears and eyes and I heard things and read things. I also could add and remembered being in my parents' wedding in 1975.
So I grew up with one family where I have a younger half-brother and half-sister biologically. I don't look much like them as they are tall and thin. Curses for me in the genetic gene pool lottery.
I also have another "family" through my bio-dad. He remarried and I have another half-sister and two half-brothers biologically. I spent most of my life feeling as if no one wanted me because my father signed me away and had nothing to do with me. I also had a feeling of abandonment or not being good enough even in my own family as I was growing up. When my mother was angry or displeased with me, which was often, she wouldn't always treat me very nicely. Let's just say I grew up with low self esteem, extreme shyness, and weight issues. (Funny, I still have two out of three of those issues still today.)
My mother doesn't talk about my bio-dad EVER. There are no pictures of me in the house as a baby, no baby book even though I was the first and most people are rigorous about writing and detailing what the first-born did. I'm not allowed to ask about my dad because I have been told that "it's not my business." There is some bad blood there between my mother and my bio-dad. There's not any from him to her because it's been so long in time. I guess my mother is really good at holding a grudge or trying to punish other people.
Most people who do know me don't know this story. It's one that is supposed to stay hidden but I am tired of trying to play the good girl even though it's an impossible role. I'm putting it out here so it's not hidden anymore. I'm doing what I said when I started this blog; I'm exposing the messy stuff to the light so that it loses its power over me.
Tomorrow I am going to see my bio-dad and I'm not going to feel bad about it.
Friday, April 3, 2009
MS and me
I was diagnosed with multiple sclerosis in early December of 2005. It took two neurologists to finally diagnose me correctly long after I had thought that MS was my diagnosis. The first neurologist couldn't find anything wrong with me even though I had lesions on my brain. He told me that there was no way I had multiple sclerosis. Maybe I should write and ask him for my money back.
The pictures above are not mine, but they are MRIs (magnetic resonance images) of a person who does have multiple sclerosis. I just searched through google images for an image that would be appropriate to go along with today's post. You can see the lesions or sclerosis (scars) on the brain. They show up as bright white spots. When I look at my own MRIs it seems like everything is lit up or nothing is so I can never tell my own lesions from what should be there. My new neuro's PA has to point them out to me and he does.
I have one lesion in my spine around C3-4 and a handful or more in my brain. The ones in my brain have lessened over time which is possible. Lesions can heal themselves (or remyelinate) but it doesn't mean that they will. I have had a decrease in my number of brain lesions so that means some of mine have remyelinated. My spinal lesion has been there since the 2005 diagnosis so that one appears to have staying power.
When I was originally diagnosed, after three days in the hospital and one botched LP (lumbar puncture aka spinal tap) and one done under fluoroscopy (X-ray guided) and a bazillion other tests, I went on Copaxone. Copaxone is a daily MS med that comes in injectable form. Yep, that means that you give yourself a shot every day and remind yourself every day that there is something going on in your body that can pretty much do whatever it wants to do. Two of my greatest fears are waking up blind in one eye or paralyzed on one or both sides. Sometimes MS manifests itself that quickly, one moment fine and the next with a big problem.
For some people there is a denial stage when they are first diagnosed. For me, it was more of a "Finally!" moment, one I had been searching for for one year. I presented with lots of various MS symptoms starting in December of 2004. Some symptoms started long before that, primarily fatigue which has been a problem of mine since high school. My first major symptoms were weakness, numbness, difficulty walking, nystagmus (eyes jumping from left to right), dizziness, and a weird variation of L'hermitte's sign which was like an electrical current passing through my entire body which would render me unable to move for about 15-30 minutes. All that and there was nothing wrong with me!
Those first two years of being diagnosed, and most definitely the first year, found me often online at a community called MSWorld.org. It was a place where I could go and ask questions of other MSers and feel like I belonged. No one in my family had had MS and my mom didn't even believe I had MS at first, even after the neurologist diagnosed me. (Not to mention that no one in my family came to see me in the hospital for three days and they lived 50 minutes away. I drove myself to and from the hospital.) That site was a godsend for me. I also found MS blogs that were another source of inspiration.
I no longer have to go to those sites every day like I did in the beginning. I am a person with MS, an MSer, but I am also a writer, a teacher, and a woman who is closing in on 40. MS isn't my whole life anymore but it does affect my life on a daily basis. I take a number of pills in the morning and at night to control my symptoms. Lately the pills haven't worked as well because I am often not able to sleep throughout the entire night and my legs have become more restless. I also am out of work on a medical leave that ends on 1 May. I worry about my cognitive skills that affect my writing on here. (You get the cleaned up and edited version.)
I also no longer take Copaxone daily. I switched to another medication called Rebif, a three-times-a-week injectable medication known as an interferon. I am now on a third injectable med called Tysabri. It comes in an IV infusion form once every four weeks. As I type I can look down at my right hand and see a slight bruise from a blown vein. On my left hand I have a much larger bruise on top of my hand where I had a successful infusion on Tuesday.
I have MS and it has me. I am a blogger with MS but I write about lots of things. If you have any questions about multiple sclerosis please ask me. I'll do my best to answer them. Thanks for reading.
PS: I need to send a shout out to my sister, CNS, who is going to make a monthly donation to the National MS Society. You rock, sissy. Ditto.
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!
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