Thanks for the words of encouragement on dealing with the thorn that is my daughter. She just turned 6 but you'd think she was 16 with the attitude she's been giving lately.
No improvements at school for her and we took her to a therapist who said that she didn't think she had ADD, she thinks my sweet daughter is just really smart and one step ahead, so she tries to push her boundaries. We're so lucky!
At the same time, I'm impressed with her abilities and how well she's doing when she writes and reads. And there are times she's just so lovely with her little brother. But man, there are other times, like right now... :-)
The sad thing is anytime I'm having a problem she freaks out. The other night I couldn't sleep because I had really sharp pains going up and down my right arm and my thumb, index and middle fingers were numb, but my ring finger just hurt, like it was on fire. So I was really sore and in pain the next day, like I'm having today. Well, my daughter just really worries. I hate this. It's hard to say, "I'm okay" but then wince in pain at the same time.
My son is hitting and whining a lot. My goodness - what did I do having kids so late in life? I'm 39 years old and I feel like I'm 60! No wonder all the sharp pains are back! LOL!
My son is talking so much, but the funniest thing is when he says firetruck - his "tr" sounds like "f!" LOL!! I laugh every time but I try to correct him. Of course there was the day he came into my room and said the f word plain as day. When I asked him what he said he looked at me and said, "Um, I love you?" LOL!!
See - you take the good, you take the bad, you take them both and then you have the facts of life... I heard that somewhere before. Tee-Hee! Of course I've heard that, I can't tell you how often my husband walks around the house singing old TV show themes! LOL! What is up with that?
I hope you're all doing well. Please take care and thanks for reading!
Friday, September 01, 2006
Up my meds
Ok - another long while since I posted last.
I've been a little on the down side.
A couple of weeks ago I got the stomach flu - was vomiting. I was still called at home and asked to do something for work.
The next day I wanted to at least work a half day from home, but ended up working about 9 hours from home.
In the middle of it all I got ticked at these dumb emails that kept going back and forth and called a friend co-worker and yelled at her about it. Big mistake. I immediately apologized, etc. I apologized the next day, she was really rude.
This happened on a Tuesday. Friday morning I walked up to her and asked if we were okay and she said, "You need to go to your doctor and have him up your medication because whatever you're taking isn't working."
OMG!! I said, "I can't believe you totally personally attacked me." She said, "You're wasting my time."
I have NEVER had anyone be so cruel and so hurtful. What she said was ten times worse then me venting to her, which I will never forgive myself for doing. Plus it was embarrassing because she said it in front of others.
The only good thing that came out of it is I saw the true colors of someone I thought was a friend.
I'm not saying I have an excuse, but I apologized profusely. And I never said anything to attack her character or her personally, in fact, I was complaining about two new hires she was supposed to be training.
Anywho - that's what's had me down for two full weeks.
And at first I didn't really want to talk about it.
Oh well, what can you do?
I've been a little on the down side.
A couple of weeks ago I got the stomach flu - was vomiting. I was still called at home and asked to do something for work.
The next day I wanted to at least work a half day from home, but ended up working about 9 hours from home.
In the middle of it all I got ticked at these dumb emails that kept going back and forth and called a friend co-worker and yelled at her about it. Big mistake. I immediately apologized, etc. I apologized the next day, she was really rude.
This happened on a Tuesday. Friday morning I walked up to her and asked if we were okay and she said, "You need to go to your doctor and have him up your medication because whatever you're taking isn't working."
OMG!! I said, "I can't believe you totally personally attacked me." She said, "You're wasting my time."
I have NEVER had anyone be so cruel and so hurtful. What she said was ten times worse then me venting to her, which I will never forgive myself for doing. Plus it was embarrassing because she said it in front of others.
The only good thing that came out of it is I saw the true colors of someone I thought was a friend.
I'm not saying I have an excuse, but I apologized profusely. And I never said anything to attack her character or her personally, in fact, I was complaining about two new hires she was supposed to be training.
Anywho - that's what's had me down for two full weeks.
And at first I didn't really want to talk about it.
Oh well, what can you do?
Thursday, August 03, 2006
It has been a while
I'm sorry for not posting. I'm okay, just really busy. The pain stabs still come and go but nothing that's getting me down. I've had some tired days with this horrible, horrible heat! ICK!!
But other than that, just busy.
So my daughter has started Kindergarten and that alone is going to be the thing that pushes me to the edge. She's gotten in trouble every day, except two. And she's only been there for two weeks and two days. D'oh!!
My son, two years old now, is just a handful too. They like to scream, the two of them. A lot! And I guess I do too, because I do. LOL!! If you can't beat 'em, join 'em!
Hubby, Bill is very cool and supportive since I've been having to work lots of hours again. But at least I can work from home when necessary.
I hope you're all well.
Take care!!
Pamela
But other than that, just busy.
So my daughter has started Kindergarten and that alone is going to be the thing that pushes me to the edge. She's gotten in trouble every day, except two. And she's only been there for two weeks and two days. D'oh!!
My son, two years old now, is just a handful too. They like to scream, the two of them. A lot! And I guess I do too, because I do. LOL!! If you can't beat 'em, join 'em!
Hubby, Bill is very cool and supportive since I've been having to work lots of hours again. But at least I can work from home when necessary.
I hope you're all well.
Take care!!
Pamela
Friday, June 23, 2006
It's Two, Two, Two Posts in One
Better Late Than Never:
I've finally added links to other blogs I read and email with that I promised I'd add. Sorry it took so long!
Update on Pain:
Also to those who replied to my last post, thank you so much for the information!
And to Kim, thanks so much for sending folks my way!! I really appreciate it.
I had to break down and call the docs office and talked to one of the fabulous nurses (have I mentioned how glad I am I switched neurologists? :-)).
She told me that of course MS can cause the pain that I'm having and that since it's gotten to be more than once or twice a day that I should go back on Neurontin. Yippe - NOT!!!
That stuff makes me soooooooooooooooooooooooooo tired!
But after having an entire morning from home into a couple of hours at work and the pain probably took a break maybe a whole half hour during that time, I decided she was right.
I started it two nights ago and until tonight I hadn't had any of the sharp pains.
Not sure what happened tonight, other than it's the end of a horrible week at work.
Stress - there you go!
Or maybe it's the fact that my daughter is just had a cookie with sprinkles and keeps coming over to discuss what kind of cookie I have here at the desk. She keeps eyeballing it. So funny!!! That's not stress - that's just awesome! So time to let loose, relax - forget about hellish work and hellish people and concentrate on a funny, cute family!
I hope all are well!! Take care!
I've finally added links to other blogs I read and email with that I promised I'd add. Sorry it took so long!
Update on Pain:
Also to those who replied to my last post, thank you so much for the information!
And to Kim, thanks so much for sending folks my way!! I really appreciate it.
I had to break down and call the docs office and talked to one of the fabulous nurses (have I mentioned how glad I am I switched neurologists? :-)).
She told me that of course MS can cause the pain that I'm having and that since it's gotten to be more than once or twice a day that I should go back on Neurontin. Yippe - NOT!!!
That stuff makes me soooooooooooooooooooooooooo tired!
But after having an entire morning from home into a couple of hours at work and the pain probably took a break maybe a whole half hour during that time, I decided she was right.
I started it two nights ago and until tonight I hadn't had any of the sharp pains.
Not sure what happened tonight, other than it's the end of a horrible week at work.
Stress - there you go!
Or maybe it's the fact that my daughter is just had a cookie with sprinkles and keeps coming over to discuss what kind of cookie I have here at the desk. She keeps eyeballing it. So funny!!! That's not stress - that's just awesome! So time to let loose, relax - forget about hellish work and hellish people and concentrate on a funny, cute family!
I hope all are well!! Take care!
Saturday, June 17, 2006
Sharp Pains
What the heck!?! I have a good scan and all week those bursts of pain have gotten worse!
Yesterday one lasted about 2 minutes. I had another one last night, same place, left arm near the crook of my arm.
So, what is this? Doc said it was something that MS does, shoots out calcium. But I've never heard of this before. Anyone, anyone?
Let me know if you have any more info on this.
I'm thinking with a good scan, things should be good. But this is getting worse. Then again, it's been really hot in St. Louis/St. Charles the past couple of days. Maybe it's the heat.
Bummer!
Take care all!!
Yesterday one lasted about 2 minutes. I had another one last night, same place, left arm near the crook of my arm.
So, what is this? Doc said it was something that MS does, shoots out calcium. But I've never heard of this before. Anyone, anyone?
Let me know if you have any more info on this.
I'm thinking with a good scan, things should be good. But this is getting worse. Then again, it's been really hot in St. Louis/St. Charles the past couple of days. Maybe it's the heat.
Bummer!
Take care all!!
Saturday, June 10, 2006
MRI Scan brings good news
I really have to stop going such long stretches between writing.
Okay, to the basics - I had an MRI on May 16. Turns out that it was a year since my last one. Wowzers!
I got the whole kit and kaboodle with this one too, they gave me a lovely drug that let me sleep and I'll tell you,I was so incredibly disappointed when I had to wake up. I was so bummed because it was the best sleep I've had in a long time. Sleep is good.
I was a little nervous about the MRI results, not because I've been having any flare ups, but because I guess I always hope that one day the scan will say, "Oh, we were wrong, no MS!" But I know that won't really happen, so it still makes me nervous.
I've been doing well, MS wise - just these occasional, very painful and extremely annoying bursts of pain throughout my body. Just in the oddest of places - a sharp spark of pain in my finger, another one in my right thigh, another one in my toe, but they never last that long so I just think it away.
Well, the last week in May my husband and I took our Anniversary trip to Hermann, MO so we could go the wineries again. It's our now yearly thing. It was lovely and we had a great rest of the week for our vacation.
Then I got a cold - again.
So this past Wednesday when I went to the neurologist she said, "You know people with MS aren't supposed to get colds - your immune system shouldn't be letting you get away with that."
I'm sure she was being sarcastic - but I also think she had a point.
She then asked about any symptoms and I told her about the bursts of pain. She said that was definitely MS. Then I told her about several other things but she said those were normal people things. Oh, and I have carpal tunnel syndrome. I can live with that.
She then said, "Your spots have shrunk!" Woo-Hoo!! No new activity, no new lesions or larger ones. And she said the big spot I used to have that spanned across C3, C4, and C5 is now a small spot on C3 only!
Great news!!! I'm very excited! Then she said, "The Copaxone is your drug, it works for you so we're not changing anything."
I can't tell you how great that was - but of course I also asked that if there's nothing new and some of these other symptoms aren't MS symptoms does that mean I don't have MS?
"No you still have MS," she said. Then she added the dreaded phrase, "No other disease or anything else can give you a spot like you have on your c-spine." Bummer!
But hey, I'm not complaining - this is great news and I'm doing well, except being sick again. Then I got to thinking - I guess I would rather get sick, because if my immune system isn't working to kill off colds, then it's also not working on eating my myelin. So there!!!
I hope that by taking the Copaxone and by having good results that this can help other people. My neurologist is one of the top MS docs in St. Louis. She studies her patients - so I know that my results help her to help others. That's another reason why I'm so glad she's my neurologist. She's just fabulous - takes as much time as she and I both need to talk and she listens. And she studies my chart! She was telling me stuff I didn't even remember. Just awesome!!
Well, that's enough of my ranting. I hope those who read this are doing great!
Oh - also, there was an article that my neuro wrote - the title was, "You can't die from MS." Pretty fitting. We can't let this make us feel like our lives are over. If anything, it's just beginning. Maybe a different direction then we anticipated - but a beginning none the less.
I was very happy to read that Erik and Erik's girl had a baby recently. That's just excellent.
Knowing I had MS, I decided to have another baby, and I have a wonderful nearly two year old handful because of it. Another woman I know who's had MS for 25 years had both her children after she was diagnosed. Just another example of how this is just the beginning.
Stay well,
Pamela
Okay, to the basics - I had an MRI on May 16. Turns out that it was a year since my last one. Wowzers!
I got the whole kit and kaboodle with this one too, they gave me a lovely drug that let me sleep and I'll tell you,I was so incredibly disappointed when I had to wake up. I was so bummed because it was the best sleep I've had in a long time. Sleep is good.
I was a little nervous about the MRI results, not because I've been having any flare ups, but because I guess I always hope that one day the scan will say, "Oh, we were wrong, no MS!" But I know that won't really happen, so it still makes me nervous.
I've been doing well, MS wise - just these occasional, very painful and extremely annoying bursts of pain throughout my body. Just in the oddest of places - a sharp spark of pain in my finger, another one in my right thigh, another one in my toe, but they never last that long so I just think it away.
Well, the last week in May my husband and I took our Anniversary trip to Hermann, MO so we could go the wineries again. It's our now yearly thing. It was lovely and we had a great rest of the week for our vacation.
Then I got a cold - again.
So this past Wednesday when I went to the neurologist she said, "You know people with MS aren't supposed to get colds - your immune system shouldn't be letting you get away with that."
I'm sure she was being sarcastic - but I also think she had a point.
She then asked about any symptoms and I told her about the bursts of pain. She said that was definitely MS. Then I told her about several other things but she said those were normal people things. Oh, and I have carpal tunnel syndrome. I can live with that.
She then said, "Your spots have shrunk!" Woo-Hoo!! No new activity, no new lesions or larger ones. And she said the big spot I used to have that spanned across C3, C4, and C5 is now a small spot on C3 only!
Great news!!! I'm very excited! Then she said, "The Copaxone is your drug, it works for you so we're not changing anything."
I can't tell you how great that was - but of course I also asked that if there's nothing new and some of these other symptoms aren't MS symptoms does that mean I don't have MS?
"No you still have MS," she said. Then she added the dreaded phrase, "No other disease or anything else can give you a spot like you have on your c-spine." Bummer!
But hey, I'm not complaining - this is great news and I'm doing well, except being sick again. Then I got to thinking - I guess I would rather get sick, because if my immune system isn't working to kill off colds, then it's also not working on eating my myelin. So there!!!
I hope that by taking the Copaxone and by having good results that this can help other people. My neurologist is one of the top MS docs in St. Louis. She studies her patients - so I know that my results help her to help others. That's another reason why I'm so glad she's my neurologist. She's just fabulous - takes as much time as she and I both need to talk and she listens. And she studies my chart! She was telling me stuff I didn't even remember. Just awesome!!
Well, that's enough of my ranting. I hope those who read this are doing great!
Oh - also, there was an article that my neuro wrote - the title was, "You can't die from MS." Pretty fitting. We can't let this make us feel like our lives are over. If anything, it's just beginning. Maybe a different direction then we anticipated - but a beginning none the less.
I was very happy to read that Erik and Erik's girl had a baby recently. That's just excellent.
Knowing I had MS, I decided to have another baby, and I have a wonderful nearly two year old handful because of it. Another woman I know who's had MS for 25 years had both her children after she was diagnosed. Just another example of how this is just the beginning.
Stay well,
Pamela
Thursday, April 20, 2006
Busy month
I can't believe it's been almost a month since I last wrote.
I have been sooooo busy at work. I normally work from 7:30am to about 5pm. But for the past three weeks I've had a big project rolling out and I've been working from about 7:30, sometimes earlier, to 6pm. Then I get home and I have to work some more from home. UGH!!
Now I have to get ready for the MS Walk this weekend. I haven't had time to finish my team shirts - so that's the project for tonight and tomorrow.
I am really excited though - my team goal is $2500 - and so far my team has raised $2300! We are so close!! The most we've raised in the past was about $1700. I am just so psyched!
I have a great team!! They are so supportive!
I have friends on my team who I sometimes see maybe once or twice a year and yet they are always there for me on the walk!!
I'm just so greatful!!
Other than being really busy - which of course is just exhausting me - I'm doing pretty well. Just have my moments!!
I hope you're all well! Take care and if I don't get a chance to write before the walk, I'll definitely write with an update on Sunday night after the walk!!
Go "Pamela's Team" - GO!!
I have been sooooo busy at work. I normally work from 7:30am to about 5pm. But for the past three weeks I've had a big project rolling out and I've been working from about 7:30, sometimes earlier, to 6pm. Then I get home and I have to work some more from home. UGH!!
Now I have to get ready for the MS Walk this weekend. I haven't had time to finish my team shirts - so that's the project for tonight and tomorrow.
I am really excited though - my team goal is $2500 - and so far my team has raised $2300! We are so close!! The most we've raised in the past was about $1700. I am just so psyched!
I have a great team!! They are so supportive!
I have friends on my team who I sometimes see maybe once or twice a year and yet they are always there for me on the walk!!
I'm just so greatful!!
Other than being really busy - which of course is just exhausting me - I'm doing pretty well. Just have my moments!!
I hope you're all well! Take care and if I don't get a chance to write before the walk, I'll definitely write with an update on Sunday night after the walk!!
Go "Pamela's Team" - GO!!
Sunday, March 26, 2006
Enough Energy to Feel Accomplished
Despite the legs and the "Oh, can't I just lay down?" feeling. I finally cleaned enough to feel accomplished!! Woo-Hoo!!
My therapist said, "What can you do to get some things off your plate?" I said, "I need someone to clean my house. Now people come in and say it's not dirty - but clutter to me is dirty and we've had enough to beat the band! Plus my daughter said that she didn't like our house anymore because it was all "junked up." LOL!!! Kids say the darndest things - oh, and the most honest things!
Of course I need to tell myself that other things can wait - otherwise the overwhelming feeling starts again. But I'm really glad that with my therapist's advice I told Bill I needed his help and I got it!! Whew!!! All bedrooms are clean and nice and organized. Well, at least for five minutes before the kids get all the toys out again. So tired. :-)
I am so grateful to my pledge from a fellow blogger for the MS Walk - thank you so much!!!
Since last week I've raised $280! Cool!! Maybe my team can reach it's goal!! That will be great!!!
At least for a pill form of the injectibles - wouldn't that be so much better?!?! I wonder if it would be too much to ask that the pill is small and easy to swallow instead of a huge arse horse pill. Well, I'll take what we can get - as long as it's always better!!
My therapist said, "What can you do to get some things off your plate?" I said, "I need someone to clean my house. Now people come in and say it's not dirty - but clutter to me is dirty and we've had enough to beat the band! Plus my daughter said that she didn't like our house anymore because it was all "junked up." LOL!!! Kids say the darndest things - oh, and the most honest things!
Of course I need to tell myself that other things can wait - otherwise the overwhelming feeling starts again. But I'm really glad that with my therapist's advice I told Bill I needed his help and I got it!! Whew!!! All bedrooms are clean and nice and organized. Well, at least for five minutes before the kids get all the toys out again. So tired. :-)
I am so grateful to my pledge from a fellow blogger for the MS Walk - thank you so much!!!
Since last week I've raised $280! Cool!! Maybe my team can reach it's goal!! That will be great!!!
At least for a pill form of the injectibles - wouldn't that be so much better?!?! I wonder if it would be too much to ask that the pill is small and easy to swallow instead of a huge arse horse pill. Well, I'll take what we can get - as long as it's always better!!
Sunday, March 19, 2006
2006 MS Walk
I am participating in the MS Walk again this year. This will be our 4th year. "Our" meaning my team, creatively called "Pamela's Team". Sponsor me if you can - or any of my team members.
https://www.nationalmssociety.org/MOS/personal/my_team.asp?pa=50119969&pd=MOS0EWLK20060423STP
Thank you so much!
https://www.nationalmssociety.org/MOS/personal/my_team.asp?pa=50119969&pd=MOS0EWLK20060423STP
Thank you so much!
Cold in my Nose = Pains in my Legs
I have not had the best of times lately. My legs are aching. I finally called the neuro's office and told them about it. "You're not over your sinus infection?" Nope! "Well, you know that when you have a virus..." yeah, yeah, yeah.
So it's not enough to have a sinus infection and be on three different antibiotics. It's not enough to have shingles - strange though they are. It's not enough to have fatigue from the neurontin that is supposed to help the shingles. It's now time to have leg pain, leg aches, sharp pains through the arms and hands.
Hm... I hate MS!!
So it's not enough to have a sinus infection and be on three different antibiotics. It's not enough to have shingles - strange though they are. It's not enough to have fatigue from the neurontin that is supposed to help the shingles. It's now time to have leg pain, leg aches, sharp pains through the arms and hands.
Hm... I hate MS!!
Wednesday, March 01, 2006
Good Movie of the Month - not MS related
Veering off the subject of MS, because sometimes we need to do that, I want to recommend a good movie of the month.
My first recommended "feel-good" movie is the new "Pride and Prejudice". Okay, I'm a die-hard Jane Austen fan and this movie is not really even close to the book. Some may disagree, but it's just not. Okay, some things are close, but no, Jane did not write "you've bewitched me body and soul." But it's still a good line!!
And I'm so sick of these screenwriters messing up the absolute best dialogue between two people who are really drawn to each other but want to dislike each other. The scene when Darcy proposes and Elizabeth lets him have it. Why or why do people not let Jane's dialogue hold true? It's so good!! You don't need to mess with it!! Really!! Even the 1995 version "messed" with it. UGH!!!
But I digress... see the die hard Jane Austen fan in me comes out even when I truly do enjoy the movie.
So, I'll get to the why I do like it.
Go rent Pride and Prejudice!!
My first recommended "feel-good" movie is the new "Pride and Prejudice". Okay, I'm a die-hard Jane Austen fan and this movie is not really even close to the book. Some may disagree, but it's just not. Okay, some things are close, but no, Jane did not write "you've bewitched me body and soul." But it's still a good line!!
And I'm so sick of these screenwriters messing up the absolute best dialogue between two people who are really drawn to each other but want to dislike each other. The scene when Darcy proposes and Elizabeth lets him have it. Why or why do people not let Jane's dialogue hold true? It's so good!! You don't need to mess with it!! Really!! Even the 1995 version "messed" with it. UGH!!!
But I digress... see the die hard Jane Austen fan in me comes out even when I truly do enjoy the movie.
So, I'll get to the why I do like it.
- The scenery - BEAUTIFUL!! I've been to England and long to go back and hope to go with my husband and my mom and my daughter and my son and whoever else wants to go!! They did a marvelous job in this film with the scenery. I long to watch the movie again so I can see the scenery. Ah - England!
- The music - BEAUTIFUL!! I just have to say, I'm going to be 39, I listen to Annie Lennox, James Taylor, Sting, Van Hagar (Van Halen with Sammy Hagar), etc, etc. I also listen to Mozart - a lot, Bach, Beethoven, Debussy.... I can't list all of them - but Classic. I listen to Showtunes. My husband, kids and stepkids are always amazed that when we put the "Showtunes" station on the cable TV, I can either sing or name that tune about 70% of the time. And I listen to Sountracks. I love the soundtrack to Pride and Prejudice. It's just beautiful music. And on a day like today, Sunny and 70 in St. Louis, it was perfect music. Of course I went to lunch with another 39 year old in her convertible and we listened to rap music. It really would have been better listening to the soundtrack to Pride and Prejudice. But then it would have been better driving in the country in a convertible listening to the soundtrack of Pride and Prejudice. :-)
- The acting - okay it was good... I just wish that whatshisface who plays Darcy could have had more lines, because in the book, he really does talk a lot more than this guy did! :-)
- The romance - it really is romantic. It's a great romance and we don't get enough of those in the theatres lately!
Go rent Pride and Prejudice!!
Fatigue, thy name is - well, um, fatigue
The last two weeks have gotten pretty tough as far as my best friend, Fatigue, goes.
And I've unfortunately found a particular culprit. Well, a culprit aside from MS.
Neurontin! Okay, that works, Neurontin, thy name is Fatigue. At least for me.
I can't stop taking it because I'm not completely over the Shingles and the nurses tell me that if I stop it, I could have MS flare ups.
"If it's not one thing it's another!"
Work is going crazy, I have huge deadlines and something I've been working on since July has finally come to pass, therefore, more craziness. Fatigue was not on my list of things to make it harder!!! ARGH!!!
But on a positive note, I'm in a much better mood - except of course when I feel like passing out. So the anti-depressant is a really good thing. Going strong since December on this, so woo-hoo!!
The kids are great, even though they're screaming right now. :-) My son is so smart, he's talking so much and doing just so many grown up kid things for a 20 month old. My daughter, well, she's 5 and fighting. And just as beautiful and funny as ever.
Hope all my readers are doing well!!
And I've unfortunately found a particular culprit. Well, a culprit aside from MS.
Neurontin! Okay, that works, Neurontin, thy name is Fatigue. At least for me.
I can't stop taking it because I'm not completely over the Shingles and the nurses tell me that if I stop it, I could have MS flare ups.
"If it's not one thing it's another!"
Work is going crazy, I have huge deadlines and something I've been working on since July has finally come to pass, therefore, more craziness. Fatigue was not on my list of things to make it harder!!! ARGH!!!
But on a positive note, I'm in a much better mood - except of course when I feel like passing out. So the anti-depressant is a really good thing. Going strong since December on this, so woo-hoo!!
The kids are great, even though they're screaming right now. :-) My son is so smart, he's talking so much and doing just so many grown up kid things for a 20 month old. My daughter, well, she's 5 and fighting. And just as beautiful and funny as ever.
Hope all my readers are doing well!!
Saturday, February 11, 2006
Feeling worse for wear
So, I have a horrible chest cold and congestion. I lost my voice this week. My shingles have gotten so much more painful and they feel like burns. I have sharp pains where I can't tell if it's like the worst itch in the world or someone is stabbing me with a hot poker.
I can't sleep without waking up coughing stuff up or blowing stuff out of my nose. Not to mention the fact that my back hurts horribly when I cough.
I try to rest and now I have horrible stomach pains and every time I lie down I have to cough stuff up.
That and MS. I just wonder, can it be worse than this?
Okay, so this is my pity party day!
This week was just the absolute worst. Also, my Neuro put me on Neurontin for the shingles, so I'm wondering if the stomach pains are a side affect of the meds. What else is new?
ARGH!!!
I hope to write tomorrow and it's much more pleasant!
I can't sleep without waking up coughing stuff up or blowing stuff out of my nose. Not to mention the fact that my back hurts horribly when I cough.
I try to rest and now I have horrible stomach pains and every time I lie down I have to cough stuff up.
That and MS. I just wonder, can it be worse than this?
Okay, so this is my pity party day!
This week was just the absolute worst. Also, my Neuro put me on Neurontin for the shingles, so I'm wondering if the stomach pains are a side affect of the meds. What else is new?
ARGH!!!
I hope to write tomorrow and it's much more pleasant!
Tuesday, February 07, 2006
Shingles - ARGH!!
Okay, so what the heck?!?!? I took my Friday night shot in my left hip and quickly noticed a little red spot afterwards. Well, that little red spot has grown and then over the weekend I noticed a couple more red spots in my front... same level as the one over by my hip.
I kept telling my husband that I was sure I didn't take my shot so far over where I can't see the spot unless I look in the mirror. And the spot was itching and now to the point of burning.
So I went to the doc today who said, "You've got shingles!" Lovely!
So then I get back to work and my husband who was home again with our sick son did the online sleuthing that I sometimes frown upon. He called me and said, "Call your neurologist, seems like there is a problem with Shingles and MS."
So I called my neuro's office and the nurse immediately got me a script for neurontin.
Anyone ever take this stuff before?
I took the first pill just now despite the fact that the drug facts seems to be a little freaky reading. ARGH!!!!
Anyone ever have shingles with their MS before? What was the outcome? What was the duration? What meds did you take with it and what MS meds were you on when you took the meds for shingles?
I'm just curious. Okay, not just curious, a little more anxious for info.
On another note, my doc asked how the antidepressant was working and I have to say, I'm doing pretty well on it. Hey, I have a burning, itchy rash on the top of my arse and I'm not crying. That's gotta be a plus!!
Well, please anyone respond if you've had shingles and you have MS. Please. Thanks so much for reading!!
I kept telling my husband that I was sure I didn't take my shot so far over where I can't see the spot unless I look in the mirror. And the spot was itching and now to the point of burning.
So I went to the doc today who said, "You've got shingles!" Lovely!
So then I get back to work and my husband who was home again with our sick son did the online sleuthing that I sometimes frown upon. He called me and said, "Call your neurologist, seems like there is a problem with Shingles and MS."
So I called my neuro's office and the nurse immediately got me a script for neurontin.
Anyone ever take this stuff before?
I took the first pill just now despite the fact that the drug facts seems to be a little freaky reading. ARGH!!!!
Anyone ever have shingles with their MS before? What was the outcome? What was the duration? What meds did you take with it and what MS meds were you on when you took the meds for shingles?
I'm just curious. Okay, not just curious, a little more anxious for info.
On another note, my doc asked how the antidepressant was working and I have to say, I'm doing pretty well on it. Hey, I have a burning, itchy rash on the top of my arse and I'm not crying. That's gotta be a plus!!
Well, please anyone respond if you've had shingles and you have MS. Please. Thanks so much for reading!!
Saturday, January 28, 2006
Shots
Okay, I've been on Copaxone for over a year (62 weeks to be exact, since I write that on each weekly page of my shot diary.). I have only missed my daily shot maybe 5 times.
Lately when I take my shot my daughter (5 years old) keeps coming over to ask me where I took the shot, if she wasn't there to watch me, and then she will say, "Oh, poor Mommy. You'll be okay." I say to her, "Honey, I'm okay. It's okay." Because I try so hard not to let her think it's hurting me.
Then one day last week she said, "Mommy, when I'm older will I have to take shots too?"
Oh my I hope not!!! And that's all I can say to her, "I hope not honey!"
I can't lie and say, "No, you'll never have to!" Because I just don't know. If my parents had told me that I wouldn't have had to go through all that I've gone through in the last three years, I'd probably be pretty bitter, maybe.
All I can think to say to her is "They'll be a cure and if not a cure, medicine like this helps."
Gees, I hate this! Not the having to take shots (I loath those! ;-)), not the living with MS, but trying to explain it to people and especially my children. My son is 18 months old now. He'll be asking the same questions soon enough. I just want to have better answers for them.
Lately when I take my shot my daughter (5 years old) keeps coming over to ask me where I took the shot, if she wasn't there to watch me, and then she will say, "Oh, poor Mommy. You'll be okay." I say to her, "Honey, I'm okay. It's okay." Because I try so hard not to let her think it's hurting me.
Then one day last week she said, "Mommy, when I'm older will I have to take shots too?"
Oh my I hope not!!! And that's all I can say to her, "I hope not honey!"
I can't lie and say, "No, you'll never have to!" Because I just don't know. If my parents had told me that I wouldn't have had to go through all that I've gone through in the last three years, I'd probably be pretty bitter, maybe.
All I can think to say to her is "They'll be a cure and if not a cure, medicine like this helps."
Gees, I hate this! Not the having to take shots (I loath those! ;-)), not the living with MS, but trying to explain it to people and especially my children. My son is 18 months old now. He'll be asking the same questions soon enough. I just want to have better answers for them.
Sunday, January 15, 2006
Hanging in there
It's been so long since I wrote. I just thought I should write an update.
I've been so busy with work and then sneaking in time with my family. The last thing I want to do after spending 9 to 10 hours on my computer at work is get on one at home.
My son is now 18 months and oh my he is so much fun to watch!! He's really smart and talks in sentences. Of course they sound like blended words, but people can understand him.
My daughter is still learning how to share, being at that transition stage between being a baby herself and moving to "Princess" stage. 5 is a tough age. She's so smart, she finishes her work at school before anyone else and the teachers don't know what to do with her. Give her more, I say. She loves to learn. I love watching my children embracing life.
Work has been exciting, but busy. We're a small, growing company and I'm one of the 4 contributor's to write our values and purpose. How exciting is that? It can only get better. I hope. Of course, there are always challenges.
I get home from a long day and feel like I'm going to collapse. I don't know why it doesn't affect me during the day. Well, in the late afternoons I've been hitting a plateau, but it's been manageable. I know I need to get moving again. I need to walk.
My team (Pamela's Team) is getting ready to participate in the MS Walk again this year. And people from my work are considering joining! I am so thrilled about that. We have a small team, but do our best to raise money. I know we can reach our goal this year. I'm just so touched that they participate every year with me. They're a great group of people.
The depression is pretty under control now. The fourth med was the charm, I believe. I still have my moments. But it's ten times better than it was. Now I feel like I'm walking through life in awe of the people around me, particularly my kids. It's better this way to see the joy and life in others rather than always worry. Who knew? HA!
I hope you're all well. I've had some cold spot symptoms, the numbness and fatigue. But other than that, I've been doing really well. Copaxone is definitely the drug for me. Just still really am hoping for the pill form. But, who isn't? :-)
I've been so busy with work and then sneaking in time with my family. The last thing I want to do after spending 9 to 10 hours on my computer at work is get on one at home.
My son is now 18 months and oh my he is so much fun to watch!! He's really smart and talks in sentences. Of course they sound like blended words, but people can understand him.
My daughter is still learning how to share, being at that transition stage between being a baby herself and moving to "Princess" stage. 5 is a tough age. She's so smart, she finishes her work at school before anyone else and the teachers don't know what to do with her. Give her more, I say. She loves to learn. I love watching my children embracing life.
Work has been exciting, but busy. We're a small, growing company and I'm one of the 4 contributor's to write our values and purpose. How exciting is that? It can only get better. I hope. Of course, there are always challenges.
I get home from a long day and feel like I'm going to collapse. I don't know why it doesn't affect me during the day. Well, in the late afternoons I've been hitting a plateau, but it's been manageable. I know I need to get moving again. I need to walk.
My team (Pamela's Team) is getting ready to participate in the MS Walk again this year. And people from my work are considering joining! I am so thrilled about that. We have a small team, but do our best to raise money. I know we can reach our goal this year. I'm just so touched that they participate every year with me. They're a great group of people.
The depression is pretty under control now. The fourth med was the charm, I believe. I still have my moments. But it's ten times better than it was. Now I feel like I'm walking through life in awe of the people around me, particularly my kids. It's better this way to see the joy and life in others rather than always worry. Who knew? HA!
I hope you're all well. I've had some cold spot symptoms, the numbness and fatigue. But other than that, I've been doing really well. Copaxone is definitely the drug for me. Just still really am hoping for the pill form. But, who isn't? :-)
Saturday, December 03, 2005
Month since writing
Well, it's been a crazy month. I started on my fourth anti-depressant last night! They all give me headaches so bad, and the last one, Wellbutrin gave me the first Migraine I've had in almost ten years!
So, I'm on the fourth one, which I hope helps, sans headaches.
My work has also moved twice since the day before Thanksgiving, so that's been crazy, and now we have the holidays.
I can't believe it's already December 3! There's no time, no time!!! UGH!!
I saw my new Neurologist and she's wonderful!! I'm very optimistic and I finally have a true diagnosis. "Classic relapsing/remitting." She also said that I'm doing great and that Copaxone is obviously a great fit for me!!
I also told her how I feel guilty that I don't take the time to research and she looked at me quizzically and said, "Why would you need to research? That's my job. Your job is to take care of you and your family." Wow!! She also has a great staff of nurses that I can call pretty much anytime! That is wonderful!! So I'm very happy that I switched docs.
Another thing she told me was that I need to get 8 hours of sleep a night and a one hour nap during the day. HA!! That's funny!! Instead the anti-depressants have been waking me up at 5am. Ick! And my Dad said, "You just keep going and going." I do have more energy, but I feel tired. Weird. We'll see how this works out.
I hope you're all well. Happy Holidays!
So, I'm on the fourth one, which I hope helps, sans headaches.
My work has also moved twice since the day before Thanksgiving, so that's been crazy, and now we have the holidays.
I can't believe it's already December 3! There's no time, no time!!! UGH!!
I saw my new Neurologist and she's wonderful!! I'm very optimistic and I finally have a true diagnosis. "Classic relapsing/remitting." She also said that I'm doing great and that Copaxone is obviously a great fit for me!!
I also told her how I feel guilty that I don't take the time to research and she looked at me quizzically and said, "Why would you need to research? That's my job. Your job is to take care of you and your family." Wow!! She also has a great staff of nurses that I can call pretty much anytime! That is wonderful!! So I'm very happy that I switched docs.
Another thing she told me was that I need to get 8 hours of sleep a night and a one hour nap during the day. HA!! That's funny!! Instead the anti-depressants have been waking me up at 5am. Ick! And my Dad said, "You just keep going and going." I do have more energy, but I feel tired. Weird. We'll see how this works out.
I hope you're all well. Happy Holidays!
Saturday, November 05, 2005
New Depression Update
I finally did it. I went to my doctor and got on an anti-depressant. I have to say that it took me forever to go in and after talking to him I wondered why I was so scared. My doctor is fabulous. He's the same one who said, "It's either a pinched nerve or it's MS." And he's been right on ever since.
Well, I told him about how I started out the first half of the year losing my job, then job hunting, then getting a new job, which has been so much stress all on it's own. I told him about me having a breakdown that my step-kids heard and that my daughter heard and that I was worried about all of that. He heard all of my worries about money, about how long I can work, etc. I told him how even though I should feel pretty proud of the fact that I've been on these injections for nearly a year, I don't feel proud I just feel bitter and angry that I have to take them. I also told him that I'm nearing my 3 year anniversary of my diagnosis and it's really affecting more than it ever had before. I just never wanted to think about having MS.
Well he has been the first person who actually validated everything that I've been feeling.
He said that depression is really very normal. That just the job situation alone can cause depression, pile on that the stress of a blended family, raising kids and every day normal money issues and depression is more than understandable. But then he said something that I was like, "Oh my gosh, he so gets this!" He said when you have MS, MS alone can be something that causes stress and depression. He said the main thing about MS is the not knowing when I can have a relapse. He said, "You're doing fine, everything's good but you just don't know how long that will last." Then he compared it to the story of Damocles and the sword and how he had the sword hanging over his head by just one horse hair, never knowing when the sword would fall and how bad it would hurt him when it did. And that's just like MS. When will the sword fall and how bad will it be?
After he told me that I was actually pretty hopeful. He said the anti-depressant will help me, that I will feel better. I've only been on it for six days now, but I'm hoping this does the trick. Of course I have to get over the nausea and the headaches from it first. Again, if it's not one thing it's another! :-)
Oh, and I just have to share. Before I saw the doc, when his nurse called me from the waiting room, I stood up to follow her and she never even turned around to see if I was following her. Then she lead me to the scale (digital - hate 'em) and when I got to it I said, "Should I take my shoes off?" She said, "You don't have too." So I didn't and stepped on. As soon as the number came up I turned to her and said, "My shoes weigh 50 pounds." No reaction from her whatsoever, no smile, nothing. Good thing I never went into Stand Up!
One more thing, the word verification is working!! Whew!!
And I hope you all are doing well. Thanks for reading.
Well, I told him about how I started out the first half of the year losing my job, then job hunting, then getting a new job, which has been so much stress all on it's own. I told him about me having a breakdown that my step-kids heard and that my daughter heard and that I was worried about all of that. He heard all of my worries about money, about how long I can work, etc. I told him how even though I should feel pretty proud of the fact that I've been on these injections for nearly a year, I don't feel proud I just feel bitter and angry that I have to take them. I also told him that I'm nearing my 3 year anniversary of my diagnosis and it's really affecting more than it ever had before. I just never wanted to think about having MS.
Well he has been the first person who actually validated everything that I've been feeling.
He said that depression is really very normal. That just the job situation alone can cause depression, pile on that the stress of a blended family, raising kids and every day normal money issues and depression is more than understandable. But then he said something that I was like, "Oh my gosh, he so gets this!" He said when you have MS, MS alone can be something that causes stress and depression. He said the main thing about MS is the not knowing when I can have a relapse. He said, "You're doing fine, everything's good but you just don't know how long that will last." Then he compared it to the story of Damocles and the sword and how he had the sword hanging over his head by just one horse hair, never knowing when the sword would fall and how bad it would hurt him when it did. And that's just like MS. When will the sword fall and how bad will it be?
After he told me that I was actually pretty hopeful. He said the anti-depressant will help me, that I will feel better. I've only been on it for six days now, but I'm hoping this does the trick. Of course I have to get over the nausea and the headaches from it first. Again, if it's not one thing it's another! :-)
Oh, and I just have to share. Before I saw the doc, when his nurse called me from the waiting room, I stood up to follow her and she never even turned around to see if I was following her. Then she lead me to the scale (digital - hate 'em) and when I got to it I said, "Should I take my shoes off?" She said, "You don't have too." So I didn't and stepped on. As soon as the number came up I turned to her and said, "My shoes weigh 50 pounds." No reaction from her whatsoever, no smile, nothing. Good thing I never went into Stand Up!
One more thing, the word verification is working!! Whew!!
And I hope you all are doing well. Thanks for reading.
Saturday, October 29, 2005
My day off
So the hubby and I have gotten away from the kiddies. We're relaxed, we've talked, gotten some things off our chests about whether I should go on 'ye old antidepressant.
I think I'm going to try. UGH!! Some day I'll make this decision.
I think I'm in a slightly better mood right now. Just because I'm relaxed and not feeling rushed and not trying to think too much about anything right now.
Also, I skipped my shot last night, not on purpose, but because I forgot to bring my "stuff" with me to my folks house. So I'll be back on it tonight. But hey, a day off once in a blue moon, maybe it was what I needed.
Thanks to everyone who wrote to me about my last post! My name is Pamela and I have MS.
And to SinnerSaint, you're darn right. This disease is going down!!! I loved that.
Okay, now, here's a quick question about blogging. How in the heck is my blog getting SPAMMED?!?!?! UGH!!! I delete them, but how do these people find me? LOL!
Ah well, again, if it's not one thing it's another.
Now, I have to go back to hubby and me time, but I read an excerpt of Teri Garr's new book in People Magazine. It was good. I can't believe how much I'm reading about MS lately!! People are talking about this more and that's a good thing. So I'm going to get her book too to read, and I am going to read The Breakdown Lane. I think it might even help encourage me to write more.
Take care all!! Till later.
I think I'm going to try. UGH!! Some day I'll make this decision.
I think I'm in a slightly better mood right now. Just because I'm relaxed and not feeling rushed and not trying to think too much about anything right now.
Also, I skipped my shot last night, not on purpose, but because I forgot to bring my "stuff" with me to my folks house. So I'll be back on it tonight. But hey, a day off once in a blue moon, maybe it was what I needed.
Thanks to everyone who wrote to me about my last post! My name is Pamela and I have MS.
And to SinnerSaint, you're darn right. This disease is going down!!! I loved that.
Okay, now, here's a quick question about blogging. How in the heck is my blog getting SPAMMED?!?!?! UGH!!! I delete them, but how do these people find me? LOL!
Ah well, again, if it's not one thing it's another.
Now, I have to go back to hubby and me time, but I read an excerpt of Teri Garr's new book in People Magazine. It was good. I can't believe how much I'm reading about MS lately!! People are talking about this more and that's a good thing. So I'm going to get her book too to read, and I am going to read The Breakdown Lane. I think it might even help encourage me to write more.
Take care all!! Till later.
Sunday, October 23, 2005
Still Battling
Okay, I did a bad thing. I started to read The Breakdown Lane and man, I'm realizing that I have yet to really deal with having MS.
I think that for the past, almost three years, I just tried to avoid the subject. Just thinking about it when having major symptoms, having Solumedrol treatments or now every night I take a shot.
I think about it when I plan and organize my team for the MS Walk, but really, if I have a symptom I don't talk about it. I'm starting to feel that that's been my biggest mistake.
I also realized today that I haven't been telling my husband. He didn't hear until today how incredibly depressed I've been. I think he's just been feeling my anger. Poor man!
Is anyone else angry? Stupid question?
Regarding that book, I can't get past the first chapter. I'm afraid to keep reading. I started it and thought I should go back and finish 1776. Or I should write everything down myself.
In reading in other blogs I'm also realizing a lot of us either blame MS for all symptoms we have for anything or try to attribute some of our symptoms to something else.
Do you realize that we get that from our family and friends. Everyone tries to reason away these crazy symptoms! Specially for those of us with invisible symptoms. Just because someone else can't see my cold spot in the middle of my thigh, doesn't mean I don't feel it.
And I really think people are bothered if I talk about it, like I'm drawing attention to it. So I try not to talk about it. But you know what? It's part of me! I can't reason it away or pretend I'm not having a hard time with it or act like I'm fine. But I'm not fine. I have these weird crazy things going on in my body. Yes, I can walk just fine, and I'm grateful for that. But I still have crazy wacko things happen that I can't explain. The things that make me think, oh I'm just tired or I picked up my son wrong, or I must have slept on my arm and that's why I wake up every day with it numb.
But it's because I have MS. Now, I got that. I just hate having to pretend that I don't. And even telling myself that I'll deal with it, when it comes up.
Well, it comes up every night at shot time. It comes up lately, every day, throughout the day because of this depression.
I hate living every day wondering when I'll have another major relapse. And not really knowing if I'm having a relapse because of all the other weird twinges and cold spots and numb spots.
I cannot wait to see that new neuro in November.
But in the mean time, I'm finally mad. I keep thinking, that I don't have to make this part of my life. But it is.
I got something from my old company about retirement. My Dad and I sat down to see how much money I could get if I made them role it over in a monthly payment for me. But my Dad asked, "When are you planning on retiring? Can you wait till you're 70." And I said, "Dad, I don't even know if I'll be able to walk at 50, so I don't know." I don't know. That is the hardest part. I wish that someone could say, "okay, this is how long until you'll need assistance." But no one can say.
I know, I'm having a terrible pitty party. I know this blog does no one any good. Maybe that's why I feel so selfish. I don't want it to be all about me, and it truly isn't. My MS is about me and my family and my friends, at the least the ones who aren't bothered if I talk about it. Bitter much?
I'm very lucky to have such a wonderful husband. My parents are wonderful. But just like when I first found out. I had to make them know that I was okay. Well now I think I need to talk. And be sad when I'm sad, and be okay with that. And not feel guilty about letting this bother me.
If someone was stepping on my foot or sticking a needle in my thigh to make me have these feelings, my family and friends would be mad. They would talk about it. They'd say, "Hey, why is that jerk sticking a needle in your thigh?" And I'm sure they'd tell him to stop.
But this is harder for them to talk about, and thus harder for me to talk about with them. It's just harder when you can't see the jerk, I guess.
Please don't get my wrong. I have MS and in not wanting it to be the main thing in my life, I've avoided it. But it's part of me and I have it and I've got to talk about it. UGH!!
I think that for the past, almost three years, I just tried to avoid the subject. Just thinking about it when having major symptoms, having Solumedrol treatments or now every night I take a shot.
I think about it when I plan and organize my team for the MS Walk, but really, if I have a symptom I don't talk about it. I'm starting to feel that that's been my biggest mistake.
I also realized today that I haven't been telling my husband. He didn't hear until today how incredibly depressed I've been. I think he's just been feeling my anger. Poor man!
Is anyone else angry? Stupid question?
Regarding that book, I can't get past the first chapter. I'm afraid to keep reading. I started it and thought I should go back and finish 1776. Or I should write everything down myself.
In reading in other blogs I'm also realizing a lot of us either blame MS for all symptoms we have for anything or try to attribute some of our symptoms to something else.
Do you realize that we get that from our family and friends. Everyone tries to reason away these crazy symptoms! Specially for those of us with invisible symptoms. Just because someone else can't see my cold spot in the middle of my thigh, doesn't mean I don't feel it.
And I really think people are bothered if I talk about it, like I'm drawing attention to it. So I try not to talk about it. But you know what? It's part of me! I can't reason it away or pretend I'm not having a hard time with it or act like I'm fine. But I'm not fine. I have these weird crazy things going on in my body. Yes, I can walk just fine, and I'm grateful for that. But I still have crazy wacko things happen that I can't explain. The things that make me think, oh I'm just tired or I picked up my son wrong, or I must have slept on my arm and that's why I wake up every day with it numb.
But it's because I have MS. Now, I got that. I just hate having to pretend that I don't. And even telling myself that I'll deal with it, when it comes up.
Well, it comes up every night at shot time. It comes up lately, every day, throughout the day because of this depression.
I hate living every day wondering when I'll have another major relapse. And not really knowing if I'm having a relapse because of all the other weird twinges and cold spots and numb spots.
I cannot wait to see that new neuro in November.
But in the mean time, I'm finally mad. I keep thinking, that I don't have to make this part of my life. But it is.
I got something from my old company about retirement. My Dad and I sat down to see how much money I could get if I made them role it over in a monthly payment for me. But my Dad asked, "When are you planning on retiring? Can you wait till you're 70." And I said, "Dad, I don't even know if I'll be able to walk at 50, so I don't know." I don't know. That is the hardest part. I wish that someone could say, "okay, this is how long until you'll need assistance." But no one can say.
I know, I'm having a terrible pitty party. I know this blog does no one any good. Maybe that's why I feel so selfish. I don't want it to be all about me, and it truly isn't. My MS is about me and my family and my friends, at the least the ones who aren't bothered if I talk about it. Bitter much?
I'm very lucky to have such a wonderful husband. My parents are wonderful. But just like when I first found out. I had to make them know that I was okay. Well now I think I need to talk. And be sad when I'm sad, and be okay with that. And not feel guilty about letting this bother me.
If someone was stepping on my foot or sticking a needle in my thigh to make me have these feelings, my family and friends would be mad. They would talk about it. They'd say, "Hey, why is that jerk sticking a needle in your thigh?" And I'm sure they'd tell him to stop.
But this is harder for them to talk about, and thus harder for me to talk about with them. It's just harder when you can't see the jerk, I guess.
Please don't get my wrong. I have MS and in not wanting it to be the main thing in my life, I've avoided it. But it's part of me and I have it and I've got to talk about it. UGH!!
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