I got out today - drove the car too! Took my daughter to a Girl Scout event for her to earn a new Try-It and I was able to stand and talk with the other moms and not feel over tired. And it even got hot in the building and I did ok.
I did have fatigue this morning and took a looooong nap when it hit. But when I woke up I felt really good.
I still have the electrical shock sensation when I bend my head forward - but not as prominent as it has been.
None of the wretched burning sensation though - THANK GOODNESS!!! KNOCK ON WOOD!! :)
After Kate and I went to her GS event we picked up her Dad and Will and we went to see Monsters Vs. Aliens. It was awesome and we laughed out loud!
Go see it if you can!
Please take care everyone!!
Sunday, March 29, 2009
Saturday, March 28, 2009
Tuesday, March 24, 2009
That Shocking Feeling
It's baaaaaaaccccckkkkk...... :(
I've been having painful things, fatigue and what not for the past couple of weeks. I had also started noticing, just a little - very slight, the electric shock feeling when I bend my neck forward. This weekend I just started noticing it more. It's not the feeling I had when I got diagnosed. That one would radiate down my left side, into my arm and fingers and down my leg to my toes.
This time it's more isolated to my back and when I'm sitting it moves from there to the top of my right thigh.
I've also had this horrid sharp burning pain that goes from the shoulder area up to the base of my head on the left side of my neck. And I feel it through my arms in places too. Like I will feel that feeling in a very, very dull form starting in my arms and shoulders and then it will go away. Then out of the blue I'll have that burning pain and it does me in. I feel exhausted after it. And sad.
I am very sad right now. I want this to go away. I want MS to go away. I hate MS.
I'm back on Neurontin in a progressive way so the fatigue side effect doesn't just lay me flat - not that the current fatigue isn't doing that already. The nurse wants me to try for 9 days to see how it goes. So in 9 days this will be over? In 9 days I'll have an idea if this was just a pain thing or a relapse? What's the difference between plaque on the spine and a lesion? :( I should know this by now.
I just am trying to get through today really. I need to. It's not been a good day at all. Well, or yesterday. Just really sad. This stuff always makes me really very sad.
I hope everyone else is a thousand times better than I am right now!
Please take care.
I've been having painful things, fatigue and what not for the past couple of weeks. I had also started noticing, just a little - very slight, the electric shock feeling when I bend my neck forward. This weekend I just started noticing it more. It's not the feeling I had when I got diagnosed. That one would radiate down my left side, into my arm and fingers and down my leg to my toes.
This time it's more isolated to my back and when I'm sitting it moves from there to the top of my right thigh.
I've also had this horrid sharp burning pain that goes from the shoulder area up to the base of my head on the left side of my neck. And I feel it through my arms in places too. Like I will feel that feeling in a very, very dull form starting in my arms and shoulders and then it will go away. Then out of the blue I'll have that burning pain and it does me in. I feel exhausted after it. And sad.
I am very sad right now. I want this to go away. I want MS to go away. I hate MS.
I'm back on Neurontin in a progressive way so the fatigue side effect doesn't just lay me flat - not that the current fatigue isn't doing that already. The nurse wants me to try for 9 days to see how it goes. So in 9 days this will be over? In 9 days I'll have an idea if this was just a pain thing or a relapse? What's the difference between plaque on the spine and a lesion? :( I should know this by now.
I just am trying to get through today really. I need to. It's not been a good day at all. Well, or yesterday. Just really sad. This stuff always makes me really very sad.
I hope everyone else is a thousand times better than I am right now!
Please take care.
Saturday, March 14, 2009
What's to look forward to?
I've been wondering about this blog. Like should I keep it? Does it help? All those things.
But the big one is the title "Looking forward with Multiple Sclerosis".
When I first started this I'm fairly certain that I was saying I was looking forward to things even though I have MS.
I still am - but never really thought of all those things I'm looking forward to.
Here are a few things that I've been thinking of lately - but I've categorized them.
What I'm looking forward to in my life:
But the big one is the title "Looking forward with Multiple Sclerosis".
When I first started this I'm fairly certain that I was saying I was looking forward to things even though I have MS.
I still am - but never really thought of all those things I'm looking forward to.
Here are a few things that I've been thinking of lately - but I've categorized them.
What I'm looking forward to in my life:
- My kids to stop fighting some day. Which they're doing now.
- My kids to fight intelligently - without the sticking out of the tongue.
- My kids to keep learning and doing so well in school.
- Will to start kindergarten this year.
- Kate to be that great big sister she has been and is becoming more of. Much more tolerant then before.
- Both of them to graduate from High School, then College!
- Both of them having families of their own. I really look forward to that. I'll be old - but I'll still be around. I really want to be.
- I really can't wait till I can pay off some bills.
- Looking forward to the economy improving - can't help adding that - it's a current worry.
- I want to get the beagle in agility classes - looking forward to her doing well at that. She's a smart puppy!
- Being able to spend time with my best friend.
- Being with my folks!
- Playing with the kids.
- having our team at work doing really, really well. :) Can't help that one either - it's a current want.
- Right now - I'm really looking forward to Sunny and 70!!
What I'm looking forward to if there is a cure or oral medication for MS:
- A cure!
- Not having to take shots! OMG - I can't even begin to express how much I'm looking forward to that. I mean - if I don't HAVE to take it - then I won't even have to feel the guilt of skipping when I sometimes do. :(
- Even if I still have MS - taking Oral medication instead of the shot.
- Have I mentioned - not having to take the shots?
- Being able to take a shower and when I wash my arms, thighs, hips, and stomach, not having to feel the painful bruises from the shots or the bumps.
- Not having grossly indented skin - worse then cellulite.
- Not being soooooooooooo fatigued all the time.
- Being able to wake up from a nights sleep and not feel like I need to go back to bed forever.
- Being happier.
- No more excruitiating sharp pains that come up my neck into my head.
- No more feeling numb or tingles in my fingers, hands, legs, middle of my back, thighs, heels, and even in my head - so weird - like my hair is standing up.
- No more feeling like someone's using a VooDoo doll with my name on it.
- I could go on and on.
What I'm looking forward to with MS:
- The 7th year my team participates in the MS Walk is this April - I'm looking forward to that and really hope we can make our goal.
- The next Webcast on dealing with symptoms and hearing about the latest research.
- Hearing about people who have had specific treatments for MS and are doing so much better.
- I'm looking forward to hearing that people who have visible disabilities with MS, that they can get a treatment that reverses MS. I heard about that and that would be lovely.
- I'm making these bracelets for my team members - in the MS Walk colors - I'm looking forward to giving those to the girls and I hope they like them.
- Looking forward to reading some of these blogs and hearing that people are feeling better.
That's about it in a nutshell. I could go on forever - but who has that much time? We're all so busy.
If anyone is still reading - I hope you like the new background and look of the site. I wanted something a bit more cheerful and there are these free blog backgrounds, so this one made me smile and I grabbed it.
Take care all!
Thanks for reading!
Pamela
Sunday, February 22, 2009
MS Walk & MS Awareness
I have said before that I haven't gone to groups and not one to talk to others about MS.
I don't really know what to say in person. It seems to be easier to put down my complaints and experiences on this thing. More like not facing it in others :(.
My family and I went to the Gateway Chapter's MS Walk Kickoff party. It was really enlightening. Hearing from others who walk and are trying to raise money.
There was a woman there with MS who shared some of her experiences with the disease and she is a volunteer and does so much for the society.
I feel a little lacking in the area of support. I make the MS Walk my yearly contribution and sometimes it's so hard to ask for donations. After 7 years of doing the walk, I feel bad to ask the same family and friends - but also so incredibly grateful and amazed when they continue to do so.
There was something this woman said that made me feel reminded that I'm not alone. She talked about the fatigue. And oh my gosh, how I have tried the last year to make it not a big deal.
When I've felt fatigued lately, I take a nap and think I'm sick or coming down with something.
I always tell someone - just let me rest my eyes for a bit and "I hate this feeling". Which I do. I absolutely hate it. But this woman also made me nervous. She retired at 45, I think she said. I am going to be 42 this year and work long hours and really don't want to lose this job. So I'm going to work extra hard to take care of myself so I don't have to worry about it.
Like - work extra hard to take naps. LOL!! Sounds so funny to say!
So, while I'm back in awareness of my MS, we're fast approaching the MS Awareness week and I'm hoping to raise at least $3,000 for this years MS Walk.
I feel much more hopeful that there is a cure on the horizon. Just by seeing some of the advances made in the last year - like the stem cell procedure. Would be incredible.
I hope you're all well!
Don't forget about MS Awareness week March 2-8! And please contribute and ask friends to contribute to the MS Walk (my team is walking in the St. Peters, MO walk! :)), MS Challenge walk and all those brave people with MS who do the 50 miles there! They are amazing! and finally the MS Bike ride.
These are all great opportunities to raise money for further research and to provide the Chapters with the ability to provide for so many with Multiple Sclerosis!
Take care!
Pamela
I don't really know what to say in person. It seems to be easier to put down my complaints and experiences on this thing. More like not facing it in others :(.
My family and I went to the Gateway Chapter's MS Walk Kickoff party. It was really enlightening. Hearing from others who walk and are trying to raise money.
There was a woman there with MS who shared some of her experiences with the disease and she is a volunteer and does so much for the society.
I feel a little lacking in the area of support. I make the MS Walk my yearly contribution and sometimes it's so hard to ask for donations. After 7 years of doing the walk, I feel bad to ask the same family and friends - but also so incredibly grateful and amazed when they continue to do so.
There was something this woman said that made me feel reminded that I'm not alone. She talked about the fatigue. And oh my gosh, how I have tried the last year to make it not a big deal.
When I've felt fatigued lately, I take a nap and think I'm sick or coming down with something.
I always tell someone - just let me rest my eyes for a bit and "I hate this feeling". Which I do. I absolutely hate it. But this woman also made me nervous. She retired at 45, I think she said. I am going to be 42 this year and work long hours and really don't want to lose this job. So I'm going to work extra hard to take care of myself so I don't have to worry about it.
Like - work extra hard to take naps. LOL!! Sounds so funny to say!
So, while I'm back in awareness of my MS, we're fast approaching the MS Awareness week and I'm hoping to raise at least $3,000 for this years MS Walk.
I feel much more hopeful that there is a cure on the horizon. Just by seeing some of the advances made in the last year - like the stem cell procedure. Would be incredible.
I hope you're all well!
Don't forget about MS Awareness week March 2-8! And please contribute and ask friends to contribute to the MS Walk (my team is walking in the St. Peters, MO walk! :)), MS Challenge walk and all those brave people with MS who do the 50 miles there! They are amazing! and finally the MS Bike ride.
These are all great opportunities to raise money for further research and to provide the Chapters with the ability to provide for so many with Multiple Sclerosis!
Take care!
Pamela
Monday, January 26, 2009
Happy New Year - belated
I need sun!
I traveled last week by having to drive to two client locations in Illinois - all snowy and freezing cold. And it's followed me home. We're supposed to get a big storm. Blech!!
While on my trip I did a bad thing and forgot my shots. Oh well - like I was really disappointed that I didn't have to give myself a shot for two days. If I could put in that little emoticon that bats it's eyes, that's the one I'd put right here. :)
To the person who is going to use my blog for their research, I couldn't be more flattered!! I hope I help in some way. :$ - that's the embarrassed emoticon. :)
I've been trying to find some old MS bloggers and some of their pages are gone or haven't been updated in over a year. I know how that goes - but I hope everyone is still ok.
I feel ok - sometimes doubting myself a lot - but for so many more other reasons then MS. I do feel that the Wii Fit has helped me feel better physically. Although if I have to hear my trainer say to me one more time, "I've noticed that your left side is a little shaky..." UGH!! Ya think? :D all I can do is say, "no sh*t!" and then continue with my Yoga. If I ever accomplish the Tree Pose without falling on my face I will be so proud of myself.
I'm excited about the MS Walk in April. I hope it's warmer than last year!! I just feel like things are getting closer, and that there is something on the horizon MS wise that will be amazing!
I hope I'm right!
Take care all, I hope you're all well!
I traveled last week by having to drive to two client locations in Illinois - all snowy and freezing cold. And it's followed me home. We're supposed to get a big storm. Blech!!
While on my trip I did a bad thing and forgot my shots. Oh well - like I was really disappointed that I didn't have to give myself a shot for two days. If I could put in that little emoticon that bats it's eyes, that's the one I'd put right here. :)
To the person who is going to use my blog for their research, I couldn't be more flattered!! I hope I help in some way. :$ - that's the embarrassed emoticon. :)
I've been trying to find some old MS bloggers and some of their pages are gone or haven't been updated in over a year. I know how that goes - but I hope everyone is still ok.
I feel ok - sometimes doubting myself a lot - but for so many more other reasons then MS. I do feel that the Wii Fit has helped me feel better physically. Although if I have to hear my trainer say to me one more time, "I've noticed that your left side is a little shaky..." UGH!! Ya think? :D all I can do is say, "no sh*t!" and then continue with my Yoga. If I ever accomplish the Tree Pose without falling on my face I will be so proud of myself.
I'm excited about the MS Walk in April. I hope it's warmer than last year!! I just feel like things are getting closer, and that there is something on the horizon MS wise that will be amazing!
I hope I'm right!
Take care all, I hope you're all well!
Sunday, December 28, 2008
Been a very long time
Hi,
It's been so long since I last updated this. I'm doing pretty well. The depression has subsided considerably and when there are the occasions that I get sad, I'm able to overcome them much easier. And think of my children when those times are bad which lifts me up.
In April we got a Beagle puppy, Daisy, she's adorable and a handful and has been a great companion to me. So she has helped as well. She and my best friend and my kids and my folks. They've all helped me out of my slump.
I did have a sad moment when I got really dizzy, where I would fall over when I stood up, get carsick, etc. I was so worried the day it got really bad that it was my MS. But I got to my new Physician that same day and she said I had an inner ear infection and I had developed Vertigo, but she had me go to see my Neurologist to make sure. I went to one of the nurse practitioner's with my Neurologist's office the next morning and she said I was doing really well and she believed it was vertigo from inner ear too and not from MS. Thank GOD!! I cried I was so happy it wasn't a flare up.
The only other thing was that a week after that I had a lymph node in my neck get enlarged and it was probably from the inner ear infection, but I got on heavy duty antibiotics and it was much better.
So I'm doing so much better. Other than weight - lol - but whatever - I'll knock that out too. We got a Wii this Christmas so I've already been rally active with that and even set up my routine on Wii Fit.
I've gotten a few comments from folks - I hope you're all doing really well. One comment says the person has had MS for 32 years - I call that encouragement really. Please all take care!
Have a wonderful New Year and I hope you're all healthy and prosperous (despite the economy) in the coming year and years ahead. And in a few more years who knows - a cure for MS!! Can't hurt to be optimistic!!
It's been so long since I last updated this. I'm doing pretty well. The depression has subsided considerably and when there are the occasions that I get sad, I'm able to overcome them much easier. And think of my children when those times are bad which lifts me up.
In April we got a Beagle puppy, Daisy, she's adorable and a handful and has been a great companion to me. So she has helped as well. She and my best friend and my kids and my folks. They've all helped me out of my slump.
I did have a sad moment when I got really dizzy, where I would fall over when I stood up, get carsick, etc. I was so worried the day it got really bad that it was my MS. But I got to my new Physician that same day and she said I had an inner ear infection and I had developed Vertigo, but she had me go to see my Neurologist to make sure. I went to one of the nurse practitioner's with my Neurologist's office the next morning and she said I was doing really well and she believed it was vertigo from inner ear too and not from MS. Thank GOD!! I cried I was so happy it wasn't a flare up.
The only other thing was that a week after that I had a lymph node in my neck get enlarged and it was probably from the inner ear infection, but I got on heavy duty antibiotics and it was much better.
So I'm doing so much better. Other than weight - lol - but whatever - I'll knock that out too. We got a Wii this Christmas so I've already been rally active with that and even set up my routine on Wii Fit.
I've gotten a few comments from folks - I hope you're all doing really well. One comment says the person has had MS for 32 years - I call that encouragement really. Please all take care!
Have a wonderful New Year and I hope you're all healthy and prosperous (despite the economy) in the coming year and years ahead. And in a few more years who knows - a cure for MS!! Can't hurt to be optimistic!!
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