Monday, December 18, 2006

Emails, Work Update and Happy Holidays

I think I would write more often if I stopped forgetting my password. I have to sit here and tap my feet a few times before I remember. I feel like Dorothy. But my mantra is, "What is my password?"

Ok - I have to say this to that anonymous email person - I did not get MS from Chlamydia pneumoniae. They (the MS Gods) have never gotten to the point of proving that. http://www.nationalmssociety.org/What%20causes%20MS.asp
And no, antibiotics will not get rid of MS. Jiminy - if that were the case I'd finish all those unfinished prescriptions in my cabinet!

Of course, I'm the one who doesn't study up on this. I'm the one who guiltily leaves that up to my fabulous Doc. Mainly because she told me to take care of myself and my family and she would take care of the research. Believe it or not, I've actually listened to her.

Yes, it would be awesome if a "series of antibiotics" could rid me of having to take shots. But hey - if I didn't take shots, I'd have to own up to the fact that the dents in my thighs, hips, arms and stomach are actually from cellulite. Oh, but I don't have dents in my stomach. As Doc pointed out. Gee - thanks!! She then proceeded to say - "Shoot yourself there."
This is why I won't ever lipo. I need the fat to shoot into.

So enough about MS, what do you think about MS? That was a play on a line from Beaches, which was a play on a line from something else... I think.

Anyway, about the new job - I cannot wait! I am having a hard time with short timers attitude and with the holidays, it's that much harder to concentrate. In fact... I only logged in tonight to do some work. I love procrastination. It's so wasteful. :-)

The holidays are here and I'm really so excited. I spent 4 hours wrapping presents yesterday and I will not apologize if I over indulged this year. My daughter is in the peak of her Santa believes and she's just so adorable. She gives me that, "hm, I'm not sure look" but then also has so much wonder when she talks about Christmas. Then my son is at the age where he can get into Christmas. The best part is how he walks up to the tree and smacks the "bells" on the tree, as if they were baseballs. He's all boy - that is for sure!!
This is just so exciting! I love watching them enjoy this time.

I also hope you all are enjoying this time! Have a very safe and happy holiday!! Please take care of yourselves.

Saturday, December 09, 2006

Wild Ride

Well, it's been a wild ride lately!
Health wise, November wasn't a great friend to me.
I had the upper respiratory that caused the MS flare ups for about two weeks, then as I was just getting over that I got either the stomach flu or food poisoning. It was really horrible. When it first hit, it was awful, I thought I was going to die. I was grateful to get through that night.

As an aside, I have to tell you about what I remember most about my day of recovery.
I spent most of it lying in my bed all day (if I wasn't in the bathroom - okay - maybe that's TMI) and watching the leaves fall from my beautiful Bradford Pear trees in our front yard. By the end of the day, they were almost completely bare. A cold front had come through.
I had the windows open that day because it was really warm and I could hear the leaves falling. What a fantastic sound that is!! It says Fall!!
Then of course the cold front said Winter! :-)

During my illnesses, I was trying to work from the office as much as much as possible. And when I didn't, I was given so much grief.
I went to my manager one of the days and just bawled. I said (I'm paraphrasing here), "They have no idea! I know I look fine, but they have no idea how much my legs hurt or how uncomfortable these stabbing pains can be or how exhausted I am!"
He's such a great person, he has always supported my MS, so he, of course was extremely understanding and it just felt really good to let all that out.
Of course I felt like a moron afterwards, but so it was.

Another two weeks later and guess what, another upper respiratory infection! Only this time I didn't have any flare ups. I also popped Airborne a lot to see if it would help.
I mostly worked from home to keep others from getting sick.

In between the illnesses I just was getting fed up with the negative people in the office and still having to be nice to the "Up your meds" nasty person. So I updated my resume and posted it on two Job sites and then I looked up careers at companies I was interested in.
I found the perfect one and I interviewed and I'm in. I got the offer this past week and I gave my notice this week.

It was very hard because I explained to my boss that the reason I looked was because of the nasties at work, but the reason I'm leaving is because this opportunity is something I really want to do.
He made a joke to "stay 4 years here and then go to the other."
I really thought about that because it's so hard with MS to know where we'll be in 4 years! I hate this!! Not knowing if I'll be able to even be considered for opportunities like this or not.
So it's been tough. I feel really bad leaving, because I feel like I'm abandoning my boss who is just so wonderful!! And my very good friend who is in HR for our company. Some of these people are so marvelous, it's almost hard to believe there are the nasties in the same company.
But that same "very good friend" told me to love myself and take care of myself. So I am and will be moving forward.
Hopefully I can get through the rest of December without anymore colds and without bawling my eyes out at work.

I really appreciate everyone's comments from my last blog. I felt exceptionally good when I read the latest one - I'm very glad that my blog helped someone else feel better! That's why I blog anyway!! And you all always make me feel better too! Just to be able to let it out really helps.
By the way, to the last blogger - I hope you can find a neurologist who specializes in MS. I wish you the best and keep up the search. You'll feel much better being able to communicate to someone who understands - or at least tries. :-)

Happy Holidays to all of you!! Please keep safe, warm, and cheerful!!
Pamela

Monday, October 30, 2006

MS and Infection

I've always felt a little guilty for not doing what so many other MS bloggers do and research about this disease. I don't provide any insight into the disease besides what I learn here and there and how it affects me.
My neurologist told me that the research was her job and that my job was to "take care of myself."
I try to do that. Though I work so much I lose sight of that many times.

A week ago last Friday I started feeling chilled from the inside out. I was working from home that day. At one point I felt like I had goosebumps, but when I looked at my arms I couldn't see any. And the cold spots I sometimes feel on my legs, I felt all over.
I totally disregarded all of this to the weather change and of course to the stress at work.
The next day it got worse and I have to say, for the very first time since I have known I have MS I gave into it. I hit a fatigue plateau that I have never had before. So much so that I had to stop in my tracks and sit down, sometimes just lay down on the floor where I was.
I had the pins and needles all over my body and in my face and in my head - very strange.
The coldness from the inside out, and I'm sorry - I don't know if that's MS or what, but that's just an ick feeling.

By Sunday my period started (Sorry Gentleman - fact of life), so I thought it was that. And my loving husband said, "Ohhhh, that explains a lot." Needless to say, I had been more than cranky the day before. The rest of Sunday I spent double-up with cramps so I didn't think much of the experiences of the day before and if they intertwined I wouldn't be able to explain which was worse.

Monday morning I woke up with a sore throat and a sinus infection that I felt like I had been having for three days already. So I worked from home that day and made an appointment to see my PCP the next day. I also left a message with the MS Nurse line.
It was bad that day - lots of sharp pains. I mean, the ones where it went from my pin prick in my arm to a pin prick in my leg, to my finger, to my wrist, to my lower back and it was just over and over. And the fatigue was just tremendous. I told my loving husband that I felt like someone had a Voodoo doll with my name on it. His reply - "I wonder who it would be." Like there's so many people out there with a Voodoo doll with my name on it. Wouldn't surprise me. :-)

So Tuesday I went to the doc, who doesn't really help but gave me an antibiotic, and then one of the MS Nurses called me and said something I didn't ever really know or pay attention to before.
People with MS can sometimes have flare-ups when they get infections, particularly upper respiratory. Now, I get these all the time - upper respiratory infections that is. And I've never felt like this. She also said that I may have had the infection in my body the Friday before I actually noticed it. Nice. I love my immune system!

So I went online to look up MS and Infection - Google it. I found all these articles about how they think that MS is caused by an infection - which I had heard before, but they mainly think it's from an upper respiratory infection.

Two theories: And remember - I'm just guessing here. I don't really know how much this helps anyone - but I hope it does.
1 - I had pneumonia several times before the age of 4 - to the point where they put some little sponge or something in my stomach (my Mom always talks about it) so I would stay hydrated - not really sure how the sponge would get out - but hey - it was the late 60's early 70's.
2 - I had Mono in high school. Funny thing about that - a friend of my sisters with MS said he had Mono in high school and he thinks he got MS from that. The only reason why I feel he may be on to something is because this past week I've been so exhausted that I've needed to lay down, but as soon as I lay down I feel full of energy again. I had that same thing with Mono.
Also when I had Mono - I had a headache so bad it hurt to move my eyes in my head. I've had Migraines like that before and I've heard that Migraines and MS are linked in some way.

I have no idea if any of this means anything or if it's just a bunch of hooey. I don't want to mislead anyone. But maybe it's good to ask people - have you had Mono or Pneumonia or other upper respiratory illnesses? Of course I'd like to ask - who hasn't?

I also felt kind of dumb because I hadn't read anything about the infection thing before. I do kind of leave it up to the doc, but this past week makes me want to take a little more charge of it.
Of course when I feel up to it. :-)
I have to say - this is still going on. I worked from home all last week. I went to the office today and it was tough. There was one point where I felt like I had no energy to move my legs for like five minutes. That's the giving up part. Just too tired to move them, I guess.
Right now I sit here and keep moving them around. But they tingle - that's been almost constant for the last 11 days.
I hate this. Mainly because I look good, except for the fat part :-). I look like a normal person. People I work with act like I make this crap up. I can't explain the pain or the feelings in my legs. They can't see it - so it's not happening. I guess that's kind of how I feel too. I look fine - so why don't I feel fine?
Gees - what a crazy f'd up disease this is. I can go from feeling just perfect to standing up and almost falling on my arse.

Anyway, I'm way off topic. I think that the great MS Neurologists out there are close to something. I trust my neurologist.
For the person who asked about a doc in St. Louis - go to St. John's Mercy Medical Center and ask for the top MS Neurologist. They'll give you her name and number. Not sure if I should post that on a blog and you had an anonymous email so I couldn't write back.

I hope you're all well. I look for your updates as well as emails and worry when I don't see new postings. Of course I am guilty of not posting as well.
Take care.

Friday, September 01, 2006

Thanks for the encouragement

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!

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?

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

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!

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!!

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

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!!

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!!

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!

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!!

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.
  1. 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!
  2. 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. :-)
  3. 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! :-)
  4. The romance - it really is romantic. It's a great romance and we don't get enough of those in the theatres lately!
It's a really enjoyable movie... much like "Under the Tuscan Sun" with the scenery and the music and the atmosphere and yes, there was even romance in there, but it was more with her falling in love with her new life... but that could be next months movie.
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!!

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!

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!!

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.

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? :-)