Wednesday, December 30, 2009
Then I was reminded of an appointment my son had, so I had to hurry and wash in cold water. It didn't have an effect either way on the numbness in the hand - it was still there and still painful.
I had a conference call today with a client and as soon as I was off the call my daughter made me test my Brain Age on her new DS game. My Brain Age is 80. Nice. I had to shout the color the word was in, not the color the word spelled. It took me a while to get that or I should say for my brain to get that. But even still - I thought I did well - except for the lagging times. :$ Then there was the math... as if - I suck at it already. I remember when I first was diagnosed with MS I went to have my cognition tested and felt rather clever - at the time the doctor said I did better than most people my age who don't have MS. That was 7 years ago. And truly - I was bad at math before - but I seem to have gotten worse. So here's this computer guy telling me I'm old in my brain. Yeah - nice. Like I needed that. Of course then I had to read from Occurrence at... is it Old Creek Bridge... hells bells, I forgot it already. But I do remember the book - or is it a short story? I even remember the movie of it... I think... from Jr. High maybe?
Nice brain - huh?
So my next torture will be on Friday when I do my Wii Fit Plus - can't wait for that lovely stick figure to balloon into a ball when it measure's my BMI. And then the Wii Fit will tell my my health age is 55 or something like that. Or the one I like the best is when it says I'm not steady when I balance. LOL!! And I spend the entire exercise telling it I have MS - like it can hear me.
But for right now - I am again hoping for a good night's sleep without the pain in my arm. The numb area on the foot is still there. But I have only taken one Neurontin.
Well - here's to a good night's sleep!
Take care all!
Tuesday, December 29, 2009
So here I am another night, exhausted and really wanting to sleep, but just afraid to go to bed. I don't want to get up there and not be able to get comfortable again or worse - have the pain again. It's just really awful!
I had a glass of wine earlier. I also bought chocolate today and ate too much. The last hurrah before the new year diet that lasts a week... I'm thinking about having another glass. It was good - a nice Reisling from Barefoot. Strange name for a wine? Not really since that's how the grapes used to be crushed. :D
This spot on my foot is just plain weird. Again, I don't notice it unless I touch it. Or when my foot slides down in the sheets of my bed and it just feels so weird. I think I can best describe it as being similar to the electric shock feeling from L'hermites sign. A much smaller scale... but that's pretty much what it feels like when your foot falls asleep and is coming "back to life" so to speak.
Now I'm also getting the numbness in the middle of my back - in a place where you wouldn't normally have numbness. I was hoping this little "glitch" was from my period starting - but what the heck!!
So when do we truly know it's from MS and not from something else? It's really hard to figure out, especially when I talk to family and they say, "Oh, I get that sometimes" - YIKES!!
Yeah - I don't think so...
Today is definitely a voodoo doll day and someone's got my name on the doll with lots of pins in it! I'm really delaying going to bed... now I'm just rambling and looking at Daisy (the beagle) who just is staring back. She's a dog with a lot on her mind. :D I can tell by all the sighs. It's like she's always disappointed. LOL!! I need to go to bed now!!
Norma Lee - enjoy your time with your son! 21 months - what a great age!!
Ashley - enjoy being a kid! :)
I went out with my little one's today on separate errands - and played Hand and Foot with my step-daughter too. I love them all, even my step-daughter's teenage angst. More than anything, I love being able to truly say - it will pass! Just as I keep saying to myself about these pains. They'll pass. But I still would like a more comfortable bed! :D
Nite all!! Sweet dreams!
Monday, December 28, 2009
Throughout the last 5 days I've had an area on my right foot that has been numb. It hurts when I touch it. Other than that, I don't notice it, because it's not on my toes or heel - its just on the right top side of my foot and goes down a little on the side- just a little. I can't tell if it's going under the foot, because I can't feel it.
I've never had that before. Usually the numbness goes to the toes and fingers too.
I've also had the numbness down my right arm, only with wretched pain. I keep thinking something is pinched in my back. So I haven't tried neurontin yet.
My baby girl is sitting next to me right now as I write this post. She's asking me what the word Neurontin is. I told her. I'm glad she's old enough now to begin asking more questions. I love you baby girl!!
The look on her face when she opened her DS was just the best feeling in the world. I felt like I was going to cry and thought she would too. She was so happy and I was so happy to get that for her. It made my Christmas.
So did the many compliments to my 4th Boeuf Bourguignon! I did the Julia Childs one again and this time really did the whole thing - the pearl onions and mushrooms and all! It was delicious! Tres Bien! :)
Anyway, I am kind of scared to go to bed because it's been painful. Not just muscle - but the numb arm and pains in my legs. I wish I could have a really nice peaceful sleep. Now that would be delicious!
I hope you all have a wonderful New Year!! Be Safe and here's to a WAY better 2010!!
Happy New Year,
Monday, December 07, 2009
But today I felt it big time. It felt like it started in the back and went all the way to the front, but the pain in the back was worse. It wasn't just tightness it was also pain.
So that's how things have been lately with the good 'ol MS. I had a good scan in the summer, but my body doesn't read those scans so doesn't really care when the doc says everything looks good. My immune system says, "Ha-ha!! I'll see about that!" Then I get a cold or my period and Voila! Slam right in the right arm with numbness every day, pretty much. I can't hold a fork sometime the numbness is so bad. I've had the pain down the left leg for over a month. Since it doesn't seem to be as bad so far this week, I'm hoping that ones going away. But the hug, well, it was a couple of hours ago and I've been too busy to look it up. Isn't that funny?
It feels tight still - but not like it did when it happened. When it happened I remembered hearing Montel Williams talk about it and I remember thinking at the time, I've never had that thank God! Well, I think I knew right away what it was. So I looked it up. What I found said that it can be in one side or the other or both. So I'm thinking, some of those other numb back feeling are partial hugs! Awwww - I love hugs!! But I'll skip these if I may! :D
We're so close to Christmas and I can't wait and my kids are absolute terrors and I know its because they're spoiled rotten and they just KNOW they'll get all that they ask for :( I'm a horrible mom! I just want them to appreciate it and have fun and think it's special. They've heard enough fighting around here.
Poor Kate had to help me get up the other day and my Will came to help too. Needless to say they have a lot to deal with for 9 and 5 year olds. :( So I want this Christmas to be really happy for them.
I know I didn't stay with the affirmations. It's hard to come up with positives when you're deep in the negative. But I'm trying again.
So how 'bout this one - "I am a loving, huggable woman and loving mom who is looking forward to a happy Christmas". Like that huggable part! Heck I even hug myself. LOL!! That's just not really funny - but it is!
I hope you're all well. Please take care! If I don't write back before the holiday, please have a wonderful safe, happy and healthy Holiday and NEW YEAR!!
Monday, August 17, 2009
After I write this affirmation I'll go up and do the, "Slumber party this weekend can still be cancelled" threat - which never works, but it's something.
I found this quote today - I can't find who said it, but it's everywhere on the internet... "Life is too short to wake up in the morning with regrets. So love the people who treat you right, forget about the ones who don't and believe that everything happens for a reason. If you get a chance, take it. If it changes your life, let it. Nobody said that it'd be easy, they just promised it would be worth it."
I think that says it all about my life this past week and my new today. I'm happier than I have been in so long and more hopeful then ever. I'm still cautious, but my heart is soaring! :)
With that, here is my afirmation: "I am a strong, intelligent woman and I can be honest and take risks without fear, but with love and courage."
Have a great night!
Saturday, August 15, 2009
So to prevent that I've been walking again - not that I wasn't walking before - but taking this crazy Beagle for walks. Trying to get away from the fear and heartache I'm experiencing.
All it's done for me so far is give me a blister on my heel. Oh, and make me realize that my dog has gotten out of her "training" mode. I need to train her again. I also need to train the kids on how to train her. For right now, walking I can do - its the fastest thing I can do to get out of the house without thinking too much.
Ok - affirmation for today - "I'm a good person and I am trusting the process of life."
Thursday, August 13, 2009
I spoke to a very good friend today and my (still) husband. They both told me that I'm strong. I tried to explain that every since being diagnosed I've slowly been feeling more and more scared of my future and actually maybe needing someone to take care of me.
I'm a control freak. I like to be in control and for the first time I lost it. My heart lost it too. And now I have to gain it back and push the fact that I have MS out of my mind and not let it deter my future.
So - maybe I'll start with a daily affirmation on here. Or at least a weekly one.
Today's is - I'm a beutiful loving woman, courageously loving myself and trusting others. YIKES! That's a new one!
I am also going to dedicate a lot more time to my babies. My son is in Kindergarten now and having a rough time. I hate that. I want to make them feel safe - even if I don't. :(
I also realize - My son doesn't really understand what is wrong with me yet. I don't want him to think sadness is a big part of his life since I am always sad. My poor kids. :(
Well - I'll repeat my affirmation - "I'm a beautiful loving woman, courageously loving myself and trusting others."
I hope anyone who reads this still can do an affirmation too. Take care!
Sunday, March 29, 2009
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!!
Tuesday, March 24, 2009
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
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!
Sunday, February 22, 2009
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 $3,000 for this years MS Walk.
I feel much more hopeful that there is a cure on the horizon. Just by seeing some of the advances made in the last year - like the stem cell procedure. Would be incredible.
I hope you're all well!
Don't forget about MS Awareness week March 2-8! And please contribute and ask friends to contribute to the MS Walk (my team is walking in the St. Peters, MO walk! :)), MS Challenge walk and all those brave people with MS who do the 50 miles there! They are amazing! and finally the MS Bike ride.
These are all great opportunities to raise money for further research and to provide the Chapters with the ability to provide for so many with Multiple Sclerosis!
Monday, January 26, 2009
I traveled last week by having to drive to two client locations in Illinois - all snowy and freezing cold. And it's followed me home. We're supposed to get a big storm. Blech!!
While on my trip I did a bad thing and forgot my shots. Oh well - like I was really disappointed that I didn't have to give myself a shot for two days. If I could put in that little emoticon that bats it's eyes, that's the one I'd put right here. :)
To the person who is going to use my blog for their research, I couldn't be more flattered!! I hope I help in some way. :$ - 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!