Looking Forward with Multiple Sclerosis

MS = and Walk MS =

2011-03-17T09:18:00.000-05:00

My Diagnosis Anniversary - 8 years and still moving!

2010-11-15T11:47:00.002-06:00

Eight years ago today I was diagnosed with this dreadful disease - but I'm thankful - because I'm still moving, still working full-time, still active, still able to take care of myself. I have every reason to be grateful!! I'm grateful for my kids, my family and my friends, especially my BEST friend!! He's made me the happiest even before I found out I had MS!!
So I am grateful and happy!!
Hope you're all well!!
Take care!
Pamela

Looking Forward on my own - or with a changed support system

2010-04-07T18:00:00.005-05:00

After ten years - not all happy, my husband and I are going to divorce. It's ok. We still get along - for our kids, for my step-kids.
He's a good person, just not a care-taker. I'm a good person, just not used to having to need someone to take care of me. And I KNOW I've been really more bitter since I was diagnosed with MS. But the support wasn't always there, which led us to this point.

We've moved on in the last year - but until a few weeks ago he still lived with us. Now we're doing the visitations with the kids and separating everything to prepare for a divorce. It's just harder than I thought. With the lingering issues from my relapse that began in January, it's been a battle keeping up with everything by myself. But I'm managing.
This week I actually let the laundry pile up and let the house get messy - mostly from the pollen dust that is coming through the windows because we've had gorgeous weather. So really, I can't complain.

Having MS is hard. You need to have people around you who, even if they can't really understand what you're going through, at least empathize with what you're going through. Who, when you say you're fatigued, don't say that they are fatigued too... because it's so different from being tired. Who, when you tell them, it feels like my foot is twisting into a pretzel, or it feels like my toenails are pulling off my toes, they say, like my wonderful neurologist said, "that's just what it feels like, it's really NOT happening". :)

You need to have people around you who are encouraging, who read about what's going on with MS patients, who encourage you to talk and who really want to listen.

My family is great! My parents are so wonderful, my kids and step-kids are awesome and my friends are so wonderful, particularly my best friend!!

My Neurologist said once that there are a lot of people with MS who find out after their diagnosis how their partner isn't a care-taker. It's sad to think that we have to expect our spouse or partner to be a care-taker - but that's what true love is... you just do it! If you can't... it's not meant to be. But I wouldn't trade the marriage I've had for the world because I have the greatest love in the world for my children - the step-children included. My life would be so sad without them and I love them so much. For them, I am forever grateful for what I've had with my husband and for all the good memories, there are no regrets at all. I don't even regret that it's ending. I'll only regret if we stop getting along and can't continue to be friends.

I hope you're all well!!
Take care!
Pamela

Please Be Responsible in Comments

2010-03-17T15:24:00.005-05:00

I'm really getting sick of people posting comments about so called "Miracle Cures" to Mulitple Sclerosis. It's great that things have worked for you, but it's irresponsible to tell people to stop taking their medications because of political reasons or whatever else. It's irresponsible to not have clinical proof to back up your comments.

What works for you doesn't work for everyone else and it can be dangerous to tell people to stop taking their medications.

I appreciate all other comments, but please be responsible. People seek help or other view points to what is going on with them. This blog is to help me share my experiences. I happen to be on an injectible and other meds that I don't always take.
I hope I help others.

Please understand that I don't wish to keep comments trying to sound factual where there is no proof.

I hope all my readers are doing well. Please take care!

Sensory Relapse

2010-03-10T19:58:00.002-06:00

I went to my Neurologist on Tuesday and she agrees that I'm still having symptoms from a Sensory Relapse.
We agreed that the Neurontin (Gabapentin) isn't doing it for me, so she wrote me a script for a new medicine. I'm sorry, I don't remember the name of it right now. carbomazapine or something like that. I'm anxious to get started on it, but I was out all day and didn't get a chance to get it filled yet.

I have been out at clients all day today so that was good. Felt good to be able to be out. Also, it's a beautiful day! I hope it's this nice tomorrow too.

I'll update on how the new meds work. I see my neurologist again in May, so hopefully these 6 weeks of my MS winter is almost over!

I hope you're all well. Please take care!
Pamela

Life Changes but MS Stays the same so far :(

2010-03-07T20:47:00.002-06:00

I still have the numbness in my hands. My left foot did the thing today where I couldn't move my toes, until I picked up my leg and put it on the floor. My feet still hurt. My stomach has been so uncooperative. But I'm trying to stay so active.

The weather was beautiful today. I got out for a walk with my daughter and the dog.
I really can't wait to feel like myself again. So much is going on... life is really hard right now, having MS is such an inconvenience.

I feel so exhausted right now and I want to sleep so much - but I don't have time.

I hope you're all well.
Take care!

Floating

2010-02-09T18:40:00.002-06:00

I'm still having the numbness and pain in my hands and middle of my back. Pain down my left leg, all the rest... the usual. I am taking a break from the gabapentin. I just am sick of taking 16 pills a day and not seeing a difference at all. It's only been a two day break so far.

I'm not feeling very happy still. But Winter doesn't help.
To Mike who commented about the Shingles... my Neurologist said that they don't come back and so far she's been right. I'm sorry you're having so many issues. Hopefully you're on one of the injectibles and it will help.

I was told by a friend today that he was talking to his other friend with MS who is on Tysiabri and that she hasn't had a relapse since. I think that's great news. Who knows, maybe I'll switch. Not sure I have the constitution to do that though right now.

This is going to be a short post today.
I hope you're all well or doing better than yesterday.
Take Care,
Pamela

Still symptomatic

2010-01-28T20:58:00.002-06:00

I'm in my 4th week of all this. I'm not happy. I was having a pretty good day earlier and then - just the screaming kids, non-stop, and just stuff in general has gotten me down.

I called the MS nurses line this morning to let them know I'm still having the symptoms. That I even got a new one in the middle of my back. Yesterday I started getting a numb spot in the middle left of my back and it hurts a bit.

The nurse called back and said with everything going on, and the addition of a stomach bug that I got two days ago that lasted about a day and a half, that these symptoms could last 6 more weeks. :(

That just doesn't make me happy. Right now I've got that numbness on the whole middle of my back. This is just below my shoulder blades. Weird area for numbness and it hurts - like the foot asleep feeling.

Just sick of it. A little bummed out. Worried about my kids because of this and the other "upsets" around here.

I think I need sun. I'm watching House Hunters right now and this is the second show of people looking for a place in sun. I need that. I need a vacation and not one that has anything resembling Winter.

I'm looking forward to seeing my best friend soon. But it seems so far away right now. :(

I hope you're all doing much, much better. I think I've got a mixture of the Winter doldrums as well as the crappy MS symptoms make me depressed stuff.

Please take care!
Pamela

"Hurt" is a matter of perspective

2010-01-23T17:58:00.002-06:00

My fingers and hands are still hurting badly. I had to get a refill on the Gabapentin and they wouldn't fill it, because when the old script called for 1 pill 3 times daily, going through 90 pills in a week didn't cut it for the insurance company. So I had to call the exchange to get a new refill. The neuro on call called in 4 pills 4 times daily so I got 428 pills - had to come in two humongous bottles! I really hope I don't have to take ALL of these :( Well - not so fast anyway.

The pills are doing their toll on my stomach now - at least the gastrointestinal... - so embarrassing. :(

I got out of the house and drove for the first time in two weeks today. My step-daughter and I went to the grocery store. We were hungry too - which was bad - and the reason for getting the Ho-Hos. Of course, my best friend keeps snacking on Ho-Hos and telling me about it so I had to get some. Of course he's a rail and I'm not. I don't need the Ho-Hos.

Family issues are not the best right now and with that and my relapse my kids are really feeling it. They throw tantrums at the drop of a hat. My daughter keeps wanting to sleep in my bed because she's always scared and my son has had some accidents :(. I feel so bad and sad.

I'm not happy. I wish I could feel my fingers again. I wish I could wake up and not feel pain in my hands or my legs or anywhere else. I wish I wasn't so tired. I wish my children were happy.
I'm sorry - I'm not having the best day at all.

I hope you're all well and doing much better than me today.
Take care,
Pamela

Still numb and sooooooo fatigued

2010-01-22T08:05:00.002-06:00

I think the meds and just plain old not resting like I should is catching up to me.

To Ferdinand, I hope you feel better. I won't ever go the pot route - just can't do it. I'm glad you're getting some relief with your meds. I can't wait to not have to take anything for a while.

I hope you're all doing well.

Sorry this is short - gotta get to work before the really bad fatigue sets in. :)
The only person/animal, that enjoys my fatigue is Daisy the Beagle. She loves going up for naps with me on the bed. Spoiled dog!

Take care all!!
Pamela

So it IS from something!

2010-01-20T22:34:00.002-06:00

I'm still relapsing - the pain comes and go, but I haven't felt normal feeling in my fingers for two weeks. My hands hurt!

I went to my PCP today and she said I have a sinus infection, my lymph nodes are swollen in my neck... I have "something".

She gave me a Z-pack and I can't tell you how pleased I am with that. Because I don't want to take 3 big horse pills today on top of everything else.

I'm on 1600 mg of Gabapentin now - 4 pills 4 times a day. I have darvacet for the pain and I take ambien so I can sleep :(.

I still have my depression med and my shot too. This sucks.
But I have to say - I saw a story about a woman with ALS today, and I really was thankful that I had MS and not ALS. It could be so much worse- I shouldn't complain.

I hope you're all well!
Take care!
Pamela

It's so exacerbating!

2010-01-17T17:36:00.002-06:00

I'm still in the middle of this exacerbation/relapse/glitch, etc. It hurts to type - my fingers are still numb. I'm on 1200mg a day of gabapentin and taking Darvacet for pain -and ambien so I can sleep.
I do feel like a zombie from the drugs. The drowsiness is horrendous - but I'm like not sure when I wake up when I'm awake and when I'm still sleeping. Whatever that means? :$ So unsure of what I'ms aying too. YIKES.

I've been having issues getting help :( But my parents have come over today to be here through Tuesday. I need to get work done.

Also, my kids have been horrible - but I think it's because of my situation and I cry a lot :(.
I'm a wretched mom. That my daughter has to help me open things like a bottle of water and the door to the basement. She told me today that she was kind of sad about having to do that. But then she said it was because she felt bad for me. :(

I want my kids to be happy and unspoiled. And I really wish they would stop fighting and whining.
I also want my body to work again :(. I so wish my fingers came back to life again - without the numbness, the stabbing tingling pain.

I also feel horrible because I shouldn't complain. The people in Haiti are suffering and it's awful. I watched CNN last night when they showed them pulling a 15 year old who was trapped out. How horrible. I'm so glad she survived. She had been trapped for two days I believe. I shouldn't complain.

I hope you're all well.
Take care.

My Daughter is Amazing

2010-01-12T19:33:00.002-06:00

I was walking down the stairs in my 95 year old gimpy way (again - still in the middle of this relapse/exacerbation/flare-up/glitch - or whatever you want to call it) and I was saying to myself, and anyone who was listening, that I wished I was walking like this because I had an injury or something. My daughter was downstairs on her DS and yelled at me.

"You would rather have an injury? You would rather have a BROKEN BONE!" And I said, "I would rather have an injury or broken bone that I could recover from, that would heal then this disease that there is no cure for."

"There's a cure for it!" She said, "They just haven't found it yet. But there is a cure."

She is my awesome optimist!

I should not let this "relapse" get me down... I just really wish I could type without this wretched, painful numbness in my right hand. And I wish could sleep without the burning hot, white hot pain going down my whole arms. :(

But I'll stick with my daughter here - there is a cure - they just haven't found it yet.

Worst Exacerbation EVER! :(

2010-01-11T18:34:00.002-06:00

I am in the middle of battling the worst exacerbation I've ever experienced. I hurt everywhere. I can't make a fist with my right hand at all - the pain is unbareable. I can barely get up and down the stairs - it hurts so much.

Last week I started getting a "cold" or something. Apparently a viral infection. I called my Primary Care Physician on Tuesday morning and told her how stiff I was, the pain down my right arm was getting worse, I had a headache that got worse when I moved my eyes. She was concerned that is was "Viral Mengingitis" and told me to go to the ER. So I did. I hurt so much then - but not nearly like I do now.

The ER doc said my CT scan came back fine and all the lovely plethera of blood that they took came back good. He diagnosed me with Viral Syndrome and Multiple Sclerosis. WOW!! I have Multiple Sclerosis?!?!?! Who would have thought!

So I tried to rest, I went about my week and though I was doing better except for the wretched pain still in my right arm. The numbness that hurt.

Then Saturday I went to Costco alone and then Target and I was kind of sore, but didn't think anything of it. Then yesterday I went for a two hour massage! I was so happy to go because I woke up with a "crick in my neck" and it hurt to turn my head to the right. She worked out knots in my shoulder blades and said I would be sore. I've done this so many times before, I know the routine.

I came home, took a bath (a hot bath - I'm so dumb!), then got out and my left wrist hurt, then my neck felt worse, my ankles were hurting, like I had shin splints lower down my legs, right above the feet. I thought, well, it's from pushing that cart and walking around Costco. That could do anyone in who had a little cold.

(By the way - my right hand is numb and painful as I type - I getting used to it - but certainly don't want to - it really, really, really, really sucks!)

By the time I got to bed last night I was in pain everywhere. Ever joint in my body hurt. I woke up that way - only worse. The horrible part was that my 9 year old little baby had to help me get out of bed and down the stairs. :(

She's too little to have to deal with this. To help her mom get out of bed, walk down stairs, go to the bathroom :(.

I called my neurologists office all day and left messages and then the MS Nurse called me back and said, "You've got a virus and getting double-whammies!" She reminded me that Viral infections give you the aches and pains, particularly in the joints, and MS can sometimes cause joint pain... badaboom, badabing! Then she reminded me that when I run fevers, which makes the MS worse, I get another badaboom, badabing!

I told her how I was walking like a 95 year old. I asked if it could be anything else - she said - fight the virus, take care of the pain - it will pass.

I'm hitting the Aleve and Neurontin now - and I'll be diligent.

I can't walk up and down my stairs. I can't get up from my chair or sit down to pee without it hurting my knees to bend, my back to hurt, my hips to ache. I can't open a bottle of water, turn a doorknob, wash my hands without feeling pain in every joint in my hands. Particularly my thumbs. :(

I feel like a horrible mom. :( My kids look scared and my daughter is an Angel who keeps helping me. But she's so young :( she shouldn't have to take care of her mommy. :(
I really, really, really, really hate MS. :(

But I soooo hope none of you have to go through this. I hope you're all doing well.
Please take care.

Pain, Pain Go Away, Don't come again another day

2009-12-30T20:16:00.002-06:00

I woke up this morning and my right arm was burning again - it was late too, I had to get online and start work. So I hurried up and jumped in the tub, hoping, out of desperation, for a hot bath to make the pain in my arm subside. Instead the water was cold :( And the more I ran it the colder it got, even after doing the 5 minute wait. Thinking that maybe the hot water heater just wasn't "ready".

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!

I didn't win on Ellen

2009-12-29T22:21:00.003-06:00

I woke up in pain again, with the burning in my right arm again and the numbness extending from the circle area on my foot to the side of my leg and thought how I wish I had won on Ellen! Two days of her 12 days of giveaways she had those nice beds as a prize. The Sleep Number and the memory foam one -I don't remember the name. I so wish I had one now. Of course, there is the thought that it wouldn't make much of a difference.

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!

That Numby Feeling

2009-12-28T22:08:00.004-06:00

I hope you've all had a wonderful Holiday so far! Christmas was good with the kids, my folks and my step-kids. It's been a very busy week and I'm so tired.

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,
Pamela

I got "hugged" today

2009-12-07T16:03:00.003-06:00

At least I think I did. And I'm starting to think I get partially "hugged" a lot. That numbness in the middle of my back that feels really tight, I think that may have been an MS "Hug".
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!!

Affirmations & Frustrations

2009-08-17T20:51:00.002-05:00

I just logged in to enter my new affirmation and I hear my daughter is torturing my son by not leaving his room. Then she smacked him. SIGH. Some day, he's going to haul off and let her have it and she'll look at me all bewildered. I think I'll just look at her with that look that says, "What did you expect?"

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 Affirmation

2009-08-15T07:36:00.002-05:00

I think for today I can affirm that I have a dog that will always lick my toes and my feet or anywhere on my legs or face - though I try so hard to get her to stop. I should teach her to be a Care dog. Of course if I ever needed her to pull me around anywhere she'd drag me 100 mph by the hair, most likely.

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."

Strength - not for the faint of heart

2009-08-13T12:26:00.003-05:00

It has been so long since I wrote. I've been going through relationship issues. Not the best time in my life. The MS - well, it's still there. I think the fact that it's there is why I'm so scared of my future alone. Wondering who would ever love an overweight, 42 year old woman with more facial hair then she should have.

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!

Neurontin is working

2009-03-29T19:14:00.004-05:00

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!!

A Great video on Invisible Symptoms!!

2009-03-28T08:58:00.001-05:00

That Shocking Feeling

2009-03-24T19:26:00.003-05:00

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.

What's to look forward to?

2009-03-14T19:50:00.002-05:00

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:

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

MS Walk & MS Awareness

2009-02-22T19:55:00.002-06:00

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

Happy New Year - belated

2009-01-26T19:25:00.002-06:00

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!

Been a very long time

2008-12-28T20:09:00.002-06:00

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!!

Feeling better

2008-01-27T17:11:00.000-06:00

I'm feeling better.

I went off the Zoloft and back to my Celexa. I also took the Neurontin and the itching stopped. Of course fatigue kicked in double-time, but it always does at this time of the month too. SIGH!

My mom's Aunt died... it was a couple days after my lowest point. My mom was so upset, I knew at that moment I needed to get strong again. I went up for the funeral and also got to see my best friend and came home a bit more clear headed. Not so tragic.

The day I left to go up for the funeral, I also spoke with a new MS Counselor and it just helped talking to someone a lot. Someone who could give me that objective view and remind me, "This is MS".

My kids are so great! My son makes me giggle every day and my daughter amazes me with her fabulous talent and intelligence.

A lot to stay strong for. The best thing the counselor said is that I'm struggling with the asking part. I've always been the one to take care of others and having to ask for someone to do that for me just about breaks my heart. It's extremely humbling. Especially when I'm physically capable now to take care of myself.

Right now my son is playing his Thomas the Train laptop and he just turned it upside down, so the screen is on his lap and he's holding it up to his face closely - and keeps hitting the "Train Whistle" button. Now that's what I wish I had on my laptop! LOL! Forget extra memory - I need a train whistle. Such a great kid. He's tired and needs to nap and is fighting it. He's so like me! Only - it's really hard to fight a nap with fatigue - but believe me, I've tried. And I probably act just like my son does. :-)

You know, I really and truly appreciate all my readers. I know I haven't been helpful lately, but you all need to know that your comments have helped me tremendously. Thank you so much!

I hope you're all well - we're on the last legs of Winter - and hopefully it goes by quickly! The no sun days aren't very helpful with depression. DUH! :-)
Please take care, stay warm and stay safe!

Thoughts Scare Me

2008-01-16T20:05:00.000-06:00

I haven't been doing so good with the depression. I don't like the Zoloft - at all. I thought maybe it was bringing me clarity - but instead it's making me feel so much more like giving up. Very wrong I know.

I love my kids so much and don't want to do anything to them - leave them without a mom. That would be the most selfish thing in the world. I agree with one of the comments, my daughter is picking up on my depression. She's really been acting up a lot more lately, but has made me a lot of pictures. My son, he snuggles with me more. They are the cutest, most lovable children. I'm proud to be their mommy. I so want to get past this so I can be better for them.

I have some personal issues on the home front that I'm battling. So that's difficult.

I got a cold - just a virus last week or so - had the cough, etc, so that made me more tired, feeling just overall yucky anyway. Makes the depression worse. As well as days of no sun. It's awful. I had sun days two days in a row this week and felt so much better. Today it wasn't sunny and neither was my day.

Since Monday, I've been itching like crazy. And worrying that it's something bad. Today I finally looked up the MS systems again and itching is one. I have probably seen that on "the list" before, but since I never had an itching problem before I never thought much about it.

I tried to call my Neurologist earlier this week about my depression getting worse but never got a call back from her secretary and when one of the MS Nurses called me back she said, "You're seeing a counselor on Thursday, I think you can wait, don't you?" I thought, well hell - I guess I'll wait. But now, don't feel like waiting for the secretary call me back about itching.
The write up on itching says that since it's probably neuropathic, Neurontin is one of the things used to control that. So I popped a Neurontin. I'll take another one before I go to bed. Hopefully that helps. Even though I hate that crap.

I'm sorry - I'm just rambling and complaining. I want to be happier. I have really great friends. I had a long talk with one of my friends this morning who is really fabulous. And my best friend has been there for me all day - and all week through all of this. There's no reason to feel like this.

I hope you're all doing well.
Take care!

Update - I'm a walking contradition

2007-12-13T20:16:00.000-06:00

Hi,
I'm sorry for not keeping up on this.

I hope you're all doing well and looking forward to, or already enjoying the holidays.

I had a really good MRI in November. I then had a really good follow-up appointment with my doc who said that my disease is really mild. I even "celebrated" my 5 year anniversary of my diagnosis because I'm doing well, even though I've had it for over 5 years.

The one disease my doc wants to get a handle on is my depression. I have my moments. Today and yesterday, haven't been included in those moments.

I almost lost my best friend today because I pushed so much. I think about, well, I don't have to go there.

I really hate myself like this. I feel needy when I've been so independent. I am doing great MS wise, strength, etc, but all I want to do is ball up and have someone take care of me. Now, when I don't physically need anyone to take care of me, I just want that so much. I feel guilty for wanting that. I feel guilty when I take things too personally. When I mess up I feel like it's the end of the world.

The worst part of all of this is I'm doing so well other than this depression. I have so much to be grateful for and instead I cry at the drop of a hat. It's very hard to get up in the mornings.

But I do have to say that I still do it. I'm still getting up and going about my day.
So, I'm switching antidepressants, but after the holidays are over. I'm hoping that the transition is smooth and this one helps me. I need to get through this. I need to be as strong mentally again as I am physically.

I'll get there.

I really hope you're all doing well. Here's to a HAPPY 2008 and maybe this will be the year they'll get that cure!!

How Shocking!

2007-10-07T18:28:00.000-05:00

Ok - I figured it out. While lying on my bed crying and going over everything I've done today to be "good" and asking "GOD" to take care of my kids, I realized what I felt like.

Have you ever been shocked? I was, when I was 8 or 9 or 10 - don't remember exactly - but I was helping my Dad paint the garage and I was responsible for taking the switch plates off the walls. That's when I got myself - the screw driver slipped right into the socket and gave me a jolt. I didn't realize what it was - when I did it again - I realized... I just got shocked (twice). I still can't describe the feeling exactly, a sudden rush of pain and lack of control that surges through the body but then goes away as quickly as it came.

THAT is what I've been experiencing. It's different from the electric shock feeling I get when I bend my neck forward. That one - and yes, I fear that feeling, that one just surges through one side of my body.

This feeling, it seems to be generating from my CORE - that's all I can think - Like a wire of energy surging out through my middle - but seems to be triggering more shock on my right side.

I went for a deep tissue massage today and it was really good - painful, but I felt like my shoulders were finally relaxing a bit. When I got home my husband, kids and step-kids had cleaned up the house and my husband was still vacuuming. I was so grateful. Then the vacuum broke. And Bill just kvetched the entire time, "I HATE THIS THING, I've always hated this thing..." yada, yada, yada. I was so calm, I told him I agreed, that Consumer Reports had the ratings for Vacuums in a recent issues, so I looked it up and said, "I'm going to go buy this one."

I was relaxed, I even gave the power nozzle, which is what broke, to Bill and said, 'Take it outside and beat the crap out of it, it will make you feel better." Then I had my step-son take the rest of the vacuum down to our basement so we can still use the working parts down there.
Then I left for the mall. I knew what I wanted, I knew where to go. I got into the store and I got so dizzy I thought I was going to pass out.

I had that same "tight" feeling I used to get in the base of my head, top of my neck that made me feel if I gave into it my head would fall off (I know - very strange, but I can't find another way to describe it). Only this time, the tight feeling was throughout my body, in my legs, my head, my neck, my arms, right more than left. And the more I walked, the dizzier I got. I even thought for a moment, ok - just let it take you and there are enough people here that someone would call someone, everything would be ok. But I didn't fall over, and I didn't pass out, and I just kept walking.

I even tried out the vacuum, and in my state thought the vacuum was heavy because I was feeling really weak (unfortunately, the vacuum IS heavy - but we own it now - so oh well - it sucks great though!).

I had enough distractions, that the weak, dizzy feeling was still there but not as strongly. I feel like my eyes are big and I probably look like a deer in headlights - like I'm trying to focus more. To others I probably look scared. I am.

I was dizzy getting in the car, dizzy driving... tried to concentrate while driving and I called my mom and told her it was still happening. "Go home and lie down."
Nope - I still had another task. I went to Lowe's and bought some Mums to plant in a container my folks gave us - I picked out beautiful purples and yellows with pink and purple tinges to them, and pink and while - just beautiful. Then I got home and planted them, cleaned spider webs from my front porch, hosed down my entire house, sweated, and made myself exhausted.

I went up to take a shower and the whole time I was in there I just felt like I was being shocked repeatedly. I started bawling and got out of the shower just ready to give up. I cried to my husband who said it was because I didn't drink enough water or that I had a big day. I didn't do anything too exerting. I tried to explain the feeling I had. I told him I felt like I have a rod going down the middle of my body just shocking the crap out of me. Then I said, "I do, it's my central nervous system."

I see my neuro this Wednesday and I really can't wait. I don't know what she'll say or what information I'll gather. I just hope she has some info. Also, I have to tell her I've only taken my shot 3 times this week... I'll take it tonight, but that will mean that I skipped 3 days this week. That's the most I've ever skipped in a week. SIGH.

So... I don't know why I posted all of this. I feel good being able to put some kind of description with what I'm going through... just wish sharing it made it go away.

Thank you for all of your great supportive comments! I hope you're all well. Please take care!

Lovely weather - sucky body

2007-09-29T19:50:00.000-05:00

Hello all,
I love this weather! I love the start of fall and the sunny and 70 degree days. I am working hard and trying to spend as much quality time with my kids and its kicking my behind.

Yesterday I spent the day with my daughter doing fun stuff, walking a lot and the we went bowling. I was so sore. Then today, I got a burst of energy and said, "Let's all go bowling!"
By the time I was out of the shower I was so tired I wanted to back out, but the family was counting on it, so we went bowling. We paid for an hour - but my son only had enough attention to bowl one frame (he's 3 - what did I expect) and my daughter was trying so hard that I think she got tired, and my husband just can't bowl, so after the first game they went to the arcade area and I stayed to bowl a game and a half by myself. My legs are mean to me. My right hand betrays me. Of course I thought I was just sore and tired from running around the day before. So after bowling we bought some Halloween decorations for outside and then I cleaned off the porch and pulled weeds and got all yucky sweaty again.

During the Halloween shopping I had a couple moments where I would turn to my left and get dizzy - but it was like that electrical shock feeling too. Very disheartening. :-(

I went to take a bath (yes a hot bath because I love them even though they hate me) and as soon as my body hit the water I felt every pain every where. While in the tub I got dizzy again and again. To the point where I felt like I couldn't even move. It took more energy for me to wash and rinse and get up out of the tub as it did to bowl today. Then I just sat and cried on the side of the tub when I got out. My husband came in and asked what was wrong. He was actually pretty supportive.

Every time I have a "symptom" I would rather write it off to being something else. So I of course looked up MS and Dizzy on Google and of course can make you dizzy. I'm so sick of it.

My sister told me about The Secret... not sure if you've all heard about it... mostly just how to change thinking from negative into positive affirmations. I think I'm able to change my thinking in some areas of my life to be more positive. But it's really hard when it comes to other things.

I still get so sad. I know it's hard to beat depression. Maybe I am just depressed, maybe its not a hormonal thing. Today I felt great - until I got dizzy... and it's not like just a "stood up too fast" kind of lightheaded dizzy thing - it's just different - it comes with the shock feeling, through my body, in my arms, around my neck behind my ears. I lied back in the tub after I felt that and just tried to relax and all I could "feel" was like that feeling of exposed nerve. It's just that same feeling I get when I get that shock sensation when I bend my neck forward. That feeling is the one that just depresses me. I think that maybe its because if that is on the inside of me, I can't control it. i can't massage it out, I can't do anything about it.

I'm sorry, I'm rambling now. Before I started this blog I went through and was looking at how some of the other MS bloggers are doing. Looks like some of you are still having issues too and I'm so sorry.

On Mandatory Rest Period she has this blog on Stress... http://www.todmaffin.com/blogs/ms/2007/08/27/what-does-stress-to-someone-with-ms/
I really think it adds so much to this disease. But one of the aspect of stress and MS that will just never go away is dealing with the disease. None of us give up... so that adds an element of stress in just dealing with the day to day. I'm not unable to function, for which I am grateful, but I worry about the "when" of that. This is when I need to use "The Secret" and tell myself that "when" will never take place. I want to work and be successful and exceed at everything I do. If I forget something, I stress "oh my God, I forgot about that, is it MS?" If an hour after I wake up and start working I suddenly get so overwhelmingly exhausted I need to lie down and "rest my eyes", I freak out... I shouldn't be exhausted from working for an hour just using my brain and my fingers from typing and my eyes from freaking reading. All of that adds stress.

Then relationships - oh my GOD - I try to trust and that's stressful... I try to have a conversation with my husband and that's stressful (remember, he doesn't even read this blog - how supportive is that?), my relationship with my parents is stressful - just because I don't want them to worry about me and I worry about them. And finally - two kids, 7 and 3 constantly screaming... oy vey!! The other day I put ear plugs in just because I think the screaming is screwing up something else in my brain. Maybe I have a lesion on the area that is sensitive to sound and it makes loud even worse. Who knows.

Oh - and I just bought a new car. Our old protege was going to cost so much to repair just for end of year plate renewal and all that I went and bought a new car and now I'm trying to get money to pay the taxes to get it registered. And of course a new car payment. :-( SIGH... I could go on and on. So... yoga anyone? :-) I know - the whole time I've been writing this I keep thinking, I should do something about this stress.

Well, I'll stop now... I really hope you're all doing much better and taking care.

Been a while

2007-09-09T08:35:00.000-05:00

I apologize for not posting in a long while.
I have had my moments. Depression is still there, but mostly around "that time" and I've been trying to get my PCP and my Gyn to help me there. My PCP is finally on my side there and thinks that it is hormonal. Just need to get my Gyn to agree.

MS symptoms are just the occassional voo doo doll pains and fatigue. I've been blessed with a fabulous boss who lets me work from home and I work all the time. I've been really busy with work and the kids.

I wanted to talk to any of you on Copaxone. I have been skipping shots - NOT RECOMMENDED. I mostly do it when I'm up late working and then it's midnight by the time I go up. But a couple of times, and again - NOT RECOMMENDED, I was having so much pain with the shots not going in right away. I use the AutoJect and the needle would go into my skin, but the drug wasn't pushing in quickly so it would burn tremendously from having the needle in my skin so long. OUCH!!

I finally got so tired of it I called SharedSolutions and they told me that there was a Lot of the drug that had new syringes that were causing problems with the autoject.
I do recommend calling to discuss if you've had the same issue.

They did ask me if I could inject without the autoject and I just cannot. When I get stressed I still get that weird tight feeling in my neck. Those feelings that I got when I thought something was wrong and went to the doc who gave me my diagnosis. I would rather not CAUSE that if not necessary. Injecting without the autoject is too stressful for me now.

I did a training for a client two weeks ago and had that tight feeling when it started off not so well. Of course I had just driven for over 3 hours to get there so all stress. I think I hate that feeling more than the fatigue. SIGH!

I have done one thing for myself that I am proud of... I have joined a massage place so I get a monthly massage. In fact, I have one I need to get going for. HIGHLY RECOMMENDED! Just work out stressed out muscles, take time to relax and de-stressify.

Next step - back to Yoga. I'll do that and hopefully that will work out a strained muscle I have in my abdomen. I'll keep you posted.

I hope you're all doing well! Thank you for the comments and encouragement.
Take Care!

Touchy Subject - or not

2007-06-27T19:46:00.000-05:00

It's been a bit since I've written. It's also been not so much fun lately.
About a month ago I started having horrid pains in my abdomen. At first I felt it low on the right, then up by my ribs then it radiated all over - and we're talking in the same "attack" of it. The pain would be really intense and then just be this dull ache. When it would move around my body - that's when I kept saying, "Oh no - THIS cannot be the MS too!"

I went to my PCP who said he thought it was my 'ol IBS kicking in. Drugs prescribed - don't work.

Then thought, well, ovaries - because the pain was concentrated that low. Went to my wonderful Gyn who prescribed Ibuprofen, which kicked in the IBS - not really helpful. "If it's not one thing is anotha!"

I had an ultrasound on my ovs... nothing... whew! All the time, looking at WebMD or whatever there was ALWAYS some reference to MS. DAMN!!! (That looks like it says Ms. Damn - lol!)

So - my PMS (this is the touchy subject - sorry guys) has been HORRID - I mean - I'm a different person right now. I have no confidence, I trust absolutely no one. I'm worried about everything, money, kids, friends, kids, debt, kids, work, kids, parents, kids, money, kids, and my husband who I sometimes feel more like a mom to. And of course every month at this time I get those Voodoo Doll pains again and fatigue that just KICKS MY ARSE!! I HATE my body right now! I HATE my mind! I cannot stand this.

Don't worry - already on the meds, I've even asked my PCP if I could up the milligrams and he did - still doesn't seem to cut it at this time. So tonight I decided I was going to do a little online research of the good 'ol Menstrual Cycle and MS. Of course I found a couple articles that refer to the MC causing flare ups of the MS. Of course - can't get away from this.

Found another one that says "symptoms deteriorate two to three days prior to the onset of their [cycle] and improve once [cycle] has started" - I think when they say symptoms deteriorate - I believe they mean get worse. Go figure.

I'm afraid of losing friends right now because EVERYONE either aggravates me to no end or I feel like they aren't sincere. I get mad and at the same time I feel desperate for a hug. How crazy does that sound? Maybe I'm just bi-polar.

My best friend - I about bit his head off yesterday because he told me to feel better. I was so bitter about that statement I know I upset him. I'm sure he thinks I'm nuts. But I guess that statement really gets me, because I won't get better. I mean, I will get better from today - but it will just come back. That's just a depressing thought. Ok - Pity Party again - I really apologize for this post already!

I have my neuro appointment in October. I'm not sure I can wait that long. Because this is a couple months of this getting worse and worse, I just need to figure out if there is something else.

About a week between the end of my last cycle and beginning of the PMS I get those pains in my abdomen again. So I keep thinking it's an ovulation thing.

Oh - and I have skipped my shots a couple of times. Maybe once a week it will happen, but I was NEVER like that before. I just get busy working that I forget until I go up to bed and then it's almost the next day so I skip it. Not sure if that's maybe made things a bit worse or not.

Check this out that I just found on http://www.mssociety.org.uk/
" In one study a questionnaire was given to 149 women. Of these women, 70 per cent noted that their MS symptoms seemed to change at a regular time in their cycle. They reported that the changes, usually involving a worsening of symptoms, occurred up to seven days before, and up to three days into, their period. Symptoms most commonly affected were weakness, imbalance, fatigue and depression. While other small studies have produced similar results, more research is needed to confirm the relationship between MS and menstruation."

So - PMS causes depression or crazy psycho lady in me - and MS does too- together it equals P-MS squared.
This is when I wonder about that phrase that I repeat a lot... "God doesn't give us what he thinks we can't handle" God must think I'm really strong. :-) Because if I can survive this PMS week and these horrid feelings of mistrust and really feeling alone, and the horrible idea that we have more debt than we should, particularly if I ever need a wheelchair or can't work (that's my freaking brain worrying about everything right now) - I can get through anything.
And I will. This too shall pass.

But I still hate this horrid disease!! Just with a passion, I loath it!
Although I do need to point out - I had fatigue so bad yesterday I so wanted to just sleep. I did do that a month ago - totally gave into it and took a sick day. But yesterday - no way - I took about 30 minutes to lie down - was going to take an hour - but I fought the MSer instead. SIGH! Probably should have taken the nap anyway. :-)

I really hope you're all well. Please forgive my rants again. I will write when I'm not the PMS Squared Pamela.

Please take care!

RE: Comments RE: OMG! Post

2007-05-30T21:33:00.000-05:00

Thank you Stephen! I appreciate the support. And you're right, again. :-)

Yes, I have seen multiple sclerosis sucks. The subtitle cracks me up! Talk about having a sense of humor.

I have to admit, of all the things that have made me deal with this disease better it's been the fact that I am not alone and that I can share with all of you and you know what I'm going through. I just really hope that I am helping you as well, because you all being there means so much to me.

Thank you again to LyGuy for the chuckle on his suggestion. Ninjas are super stealthy. LOL!!

So that brings me back to Yoga. Remember how I've said before the best part of Yoga has been the cool down parts where you're just relaxing? I think I'll start Yoga up again, but stick to the relaxation parts.

One last note... My Daughter has been trying today, but also a total Fashionista and being like a little mother hen. It makes it very difficult to be mad at her when she's all that. And my son was dancing with the dancers on "So you think you can dance?" tonight. He cracked me up, he was trying to do all the hip hop moves and all. LOL!! This little tiny person has quiet the personality. And then he walked over to me to get up on my lap and said, "That sucks!" I said, "What did you say?" and he said, "That sucks." I have no idea what he was saying sucks, but this little voice from this little person... just classic. :-)

Have a great night all!

OMG!

2007-05-28T18:47:00.000-05:00

I believe I am at wit's end. This f'ing disease, my family and their assumptions about what makes me "worse", my family and their assumptions about everything. And though I REALLY and TRULY do love them, I think I've reached my patience level with my kids.

My children scream EVERYDAY, nearly ALL day.
As I type this my daughter, the 6 1/2 year old, is throwing a tantrum and kicking her legs on the floor. My 2 1/2 year old son, is constantly screaming and telling me no. And if I say something he doesn't like he calls me a "Meanie." Sometimes I want to just run away. I told my husband that I was going to see Pirates again today and he said, "Who's watching the kids?" So, no, I didn't go see the movie again.

It's pretty amazing when you think about it... these kids are actually brilliant. My daughter is going into the Gifted program at school and my son, as the parent educator said, has a 5 year old's vocabulary. So it's natural I guess for them to act their worse to test my patience.

Now, the screaming has stopped so I feel okay again. But seriously, the screaming gets to be so much that I cannot take it. I feel more stressed with the loudness of it then anything else that makes me stressed.

And their screaming has gotten worse lately, so I wonder if I've gotten more "yelly". I probably have. This morning we met my folks for breakfast and my mother started saying how she hates my job because I'm so stressed by it. WHAT? I love my job and I love spending the time to do it.
I also love the fact that I work and can still work. GOD, why wouldn't I work as much as I can now. It's like I am proving something to myself that I can do this. Plus I love what I'm doing and I really think I'm good at it.

But instead of support I get grief. Then my mother said, "Well, I raised three of you and when my oldest was 6, my youngest was 2." So I made the mistake of saying, "But you didn't do it with a full time job." And she got all mad saying that it was a full time job. Yes, raising kids is a full time job... but then go out and work another full time job too. And have MS. I guess I get sick of feeling like I have to justify why things stress me out.

This is a very lonely disease. My family doesn't really read so much up on it, my husband barely knows crap about it. I think my daughter understands it more. And yes, again last night she was on her, "I hate MS" kick and saying she hopes she never has to take shots. I feel more empathy from her than any other member of my family.

I did find a site today that is really terrific in the explanations of MS and what it feels like...http://www.deannandlenny.com/feeling.htm That link is about what it feel like to have the symptoms we have. Right on... except I didn't see anything about the weird stabbing pains throughout the body that I refer to as my "Voo-Doo Doll" pains.
Then this one is about the invisible part of MS: http://www.deannandlenny.com/invisable.htm

This line wigs me out: "If you can't keep up with the thread of conversation at a big meeting, it's not because you're not interested or can't understand." Because this happens to me so much and I have to ask people to repeat what they say and I just KNOW that they think I'm not paying attention. F'ing MS!!!

So the new stuff with me... same voodoo doll pains. And for the past week I've had pains in my abdomen. Since it was moving towards my right side, I wasn't sure if it could be appendix or not. So I went to my doc (regular doc) who thinks it's my IBS... Yes, I've had it since I was 17 and just learned to deal with it. So I haven't even taken medicine for in in like 15 years. He put me on something that isn't working, so I don't think that's it. In my WebMD exploration of what it could be... because on a Sunday night when you have a holiday the next day and you're in pain, it's fun to read up on what it could be. But I came across, "MS" HA!! I mean, as soon as I saw that I thought, you f'ing piece of crap disease!!! Can't I just have something curable for once!!!
Ok, that was total pity party. But come on!!

I think I've also been more depressed and we all know the cause of that... piece of crap disease. I guess this is the time to "embrace it" - not. But I will rejoice in the fact that I can still walk and type and move and see and hear, even when it is hearing screaming kids.

My son is now throwing a baseball in the house. I think they are spoiled. How it happened, I'll never know, besides the fact that every trip to the store results in them getting something new. But other than that...

I hope you're all well. I also hope this helps you even when I'm complaining. I know, I've done that a lot lately. Please take care!

They're baaaacckkk!

2007-04-27T18:31:00.000-05:00

Well, I'm having those "pains" again. The ones that travel throughout my body.

I'm fine if it's every once in a while, but this is day two of them hitting anywhere and everywhere. I feel like someone has a voodoo doll of me again. I'm sure there are many - like the hubby said last time, "Which one could it be?" Nice.

These are particularly bad, so I broke out the Neurontin last night. I can't take that stuff... I'm just too busy and that lays me out cold. So wish there was something better! I do truly believe now that sleep does help. I believe this now that I don't get so much of it and I'm really hurting.

My hubby told me to take Ibuprofen. It just doesn't help me that he won't read up on ANY of this stuff. I know he means well, but then if he meant well, he'd read up on why that doesn't help with neuropathic pain.

I could be catching a cold though, so that could be why these are particularly bad. It's always something. And it's depressing me. I think I've cried every day this week... and no, it's not "that time" - sorry gentlemen. :-)

I just read Erik's blog about his recent visit with the stupid doctor! I think that's just horrible!! There has to be someone who will LISTEN to him.
The funny thing about the doc insisting that the spinal tap is the end all diagnosis for MS... I was told by my Neurologist that the lesions are the sure sign. If he doesn't have that, then I don't know. I just hate that he and others are being treated like a cow going through the freaking heard! Jiminy Christmas!!

I remember that after my spinal tap, my old neuro didn't really say anything differently than she had said before. So I don't know what that really told her. Other than that I'm deathly afraid of spinal taps!

I don't get these doctors. You'd think someone would want to try to remedy something out there so they could get their names in a journal somewhere. Particularly the lowest of the class. ;-)

I hope the rest of you are doing well. Really!! Please take care!

The Craze Has Died Down

2007-04-21T18:36:00.000-05:00

Well - I've turned 40 and survived (so far), my team walked in the 2007 MS Walk and raised over $2000 and I've now actually had some time to read up on some MS blogs and research.

Wow for Erik! Gosh, I know this is gonna sound crazy... but I hope that he finds out it's Lyme... because it sounds like that is something that is curable or at least more controllable. But to go through all of the MS hell and have it not be MS! That's just nuts!!
As I was reading through all of that there is that part of me going, "hm, I wonder if I have Lyme disease." With my folks having their huge property in rural Missouri, I've had many experiences with ticks. But none of those same symptoms that Erik has had.

It sucks that he didn't find a good doc till recently. I wish him lots and lots of luck and hope he gets healthy soon!!!

A friend of mine got Mono recently. I looked it up - again. I think I wrote about this a while ago, that my sister's friend's husband (:-)) has MS and he had mono as a teen also. He was whom I first heard the Mono linked to MS theory. So of course when my friend told me he got Mono I got really scared.

If there is a connection, can he get MS? Even though he's older - not a teenager - is it possible?
I read about the connection between the Epstein-Barr Virus and MS. How EBV causes Mono and how we all carry that virus even after having the infection. I found some more info on EBV, but I'm looking for more information on EBV, mono and MS too... if we carry the EBV virus, can we give others mono, even years and years later? And also, can you get mono again if you've had it before? If we can give others EBV, like our kids, then is that the tie to the possible hereditary links to MS? Again - don't want to mislead anyone - I have NO clue what I'm talking about. Just curious. I really can't wait to talk to my neuro again!! That is for sure.

Also what I found, is that there are a couple of people who have done studies on this. There seems to be a big correlation. So I'm really hoping that they can figure something out here. If they could even find a vaccine for EBV - then they could possibly lower the risk of our kids getting MS. Could you imagine? That alone would be huge!
If they were able to find that correlation, could they come up with something to restore cells I'm not sure on that... again NOT a researcher. Just hopeful!

I hope you're all well. I apologize for my recent pity parties. The birthday was just like any other day. I hit rock bottom that week... but I'm 40 now - feel no different then I did before... so life goes on. Thanks for all your support too!

Take care!!

Tired Left Side, Blurry Eyes Revealed and Hating Ants - All in a Days Post

2007-04-01T20:11:00.000-05:00

If my left side is tired, does that mean my right brain is tired?
I'm a left side of the brain person I guess... my right side is functioning well. My left side isn't. Is that how that works?
All weekend my left side has been so tired. I feel knots and aches and just tired on the left side of my body, it's just strange.
Now, my left side has always been the first sufferer of my MS flare-ups. Poor left side. And I'm sure my abuse of it, by carrying my 2 1/2 year old son, my laptop bag, my purse (that weighs a ton all on its own) and anything else I can grab, has not made my left side very happy. But this weekend, it's been unusually weak.

You've all read about my twitches and sputters and cold spots and numbness and jabs of pain throughout my body. But this weekend, actually it started on Friday, I felt my index finger "stick". At the time my left side hurt from my ear down my neck through my arm and I thought, well I just have a pinched nerve. LOL!! That cracks me up!! Since that was what I thought I had when I found out it was MS instead.

Anyway, off topic... I went to move my arm and my index finger was flexed, I guess you could say, or spasmed in a way that I knew I wasn't moving it in the position it was in. When I went to move it back with the rest of the gang (my other fingers) it wouldn't. Lasted about 30 seconds. And of course 30 seconds is a long time when your fingers aren't listening to your brain.

Maybe it's stress and truly being tired, but just another little spasm of "Hey! You have MS!"

Went to the eye doc the other day and yep, I have MS, so the blurred vision "can be somewhat from that" but I'm also "getting up there in age" so it's time to wear my glasses more frequently. The quotes are from my eye doc! NICE -huh? LOL!! So he not only upped my prescription but said I needed bifocals! And you know what, he's right. He had me hold a card with the little tiny letters in front of me and look up to see the letters on the wall. When I would switch between the two, my eyes had to focus like crazy. But then he added lenses to the bottom of these really sexy test glasses and what a difference!! My only concern was THE LINE! But I'm paying $225 for glasses so I don't get the line. Ah, growing old is fun - and expensive. No wonder my car is so pricey!

Finally for tonight, I'll tell you about my biggest pet peeve - and they're NOT pets. I've never owned an ant farm, no would I get one for my son, just for fear that they'd break free and roam around my house with the other SPRING ants that break into my house every year. UGH!! Frustrating little thieves! We're out of the bug spray, so I've been spraying Clorox bleach kitchen cleaner on them. Thus killing them and sanitizing at the same time.
But, since I've been going crazy tonight killing ants, I can't stop itching!! I get the same thing if I see a spider. Any creepy crawlies and I'm totally wigged out. My poor kids - they think I'm nuts! Or rather know I am.
My daughter is so brave, she picks them up and puts them in her hand and I freak and say, get rid of them and scrub your hands. Poor baby, she's going to be like Howard Hughes if I don't stop telling them to wash their hands all the time.

Thank you again to Stephen for your personal story. Again, puts everything into perspective.
I'm feeling much better. Less doom and gloom. Which, sad to say I think is really hitting hard a certain time of the month. If it's not one thing it's another. :-)

I hope you're all well. Please take care and Happy Spring sans Ants!

Fast approaching 40

2007-03-25T21:26:00.000-05:00

I'm going to be 40 in two weeks from tomorrow. I remember when I turned 30 how everyone told me, "Oh 30 hit me hard, blah, blah, blah." Well, it didn't affect me. I didn't feel any different, I wasn't upset about my life. I had just started dating my now husband, had felt established, and accomplished all on my own even though I went through so many ups and downs before that point.
I will always remember the line from "When Harry Met Sally" when Sally is bawling to Harry because her ex is getting married. She says, "I'm going to be 40." "When?"
"Someday! And it's just sitting there like a big dead end."

She was 32 when she said that... so when I turned 32, was married and just before the kids started coming, I thought, "Hey, I'm doing ok!" LOL. Little did I know about the time bomb that is MS. That I would have my first child at 33, find out I have MS at 35, decide at 36 that I want another and try for the second child for over a year, with one failure and go through all the ups and downs of having MS at the same time.
At 37 I had my second child. At 38 I was laid off, at 39 I hated my old job, quit my old job, got a new one.
And now I'm almost 40. What's next?
It's like the waiting with MS... what's next? When's it going to hit next?
When's life going to hit next?
I have so many desires of what I'd love for my life... unattainable.
So mostly I worry and wonder.

I'm also having that incredible feeling of wanting a break. I used to do this throughout my 20's. It hit every Spring - Spring Fever I guess.
I would go out to California to see my sister, not always the best trips, but still - I got out to Sunny California and felt my independence driving around in this "home away from home". I would go to see Jenny in her Improv group, or go to her work when she worked for Disney or see her when she worked for Universal Studios as a tour guide. I'd see "Stars" and have fun going on the crazy tours they have, like "Graveline Tours" - so cool. That's the one that takes you to all the places people died, or killed themselves or were buried. How morbidly fun it was!

I don't know why I feel like taking a break - the thing is, I may get one with MS - which is the last thing I want. God, I hate this disease!!! I had a friend tell me that they aren't a planner. I am... and I can't plan this. It's that control thing and not having it anymore. Now, I'm also really spontaneous - but I don't like MS spontaneity!

Last week I was on a call with a client and had this burn sensation go from my left ear, down the left side of my neck and then I felt it go through my left arm. I don't know if it's the nerves that are impacted by the lesion on my c-spine or not. But it hurt so bad and I couldn't help but say out loud, "Ow, ow, ow!" So then my left side just felt tired. I felt tired.

Argh... this is a pity party! I just can't get off of these lately!!

Join the Movement

2007-03-16T22:27:00.000-05:00

MS questions from a 6 year old

2007-03-13T20:56:00.000-05:00

So my 6 year old daughter said to me again tonight that she hopes she doesn't get MS when she's older.
"Will I get it?" "I hope not," is all I could reply.
"How do you get it?" All I could tell her was the truth.
"They don't know the answer to that yet."

She asks very good questions. It just sucks that she's so little and has to have some kind of understanding of this that many adults don't understand.

Just another MS moment that just smacked me in the face.

Before I end this, please no more emails about frickin' antibiotics. I don't go for data that's not fully studied and comes from an anonymous blogger. Give me a break.

Also, Windows Live Messenger is now doing something really cool for certain causes, MS being one of them. Click on the new I'M button to read more about it.

Besides from the antibiotic warrior, thanks for your comments to my "do you tell" post. I really appreciate your stories and comments.
I hope you're all well.
Take care!

Do you tell people you have MS?

2007-03-07T19:16:00.000-06:00

I haven't posted in a about a month. Things have been really busy with work and I've been enjoying the job tremendously.
Of course, being busy has it's draw-backs with my husband, so lots of stress there. Then the lack of sleep - some of which is self induced (my choice).
And then I got Strep Throat AGAIN this past weekend. The morning I started feeling the sore throat, I started having "paraesthesia" going through my left heel. Never knew what it was called before this week - I was describing it as a rushing feeling, like I can feel my blood zooming through my heel - every "two Mississippi's." But found out when describe as electric shock - much like L'Hermite's sign - man - that nails it as far as a description goes.

Today I shared the fact that I have MS with two co-workers. I had a strange reaction to that from some others. Only three people at my new job had known before. I don't know why - I brought it up because one of the co-workers was saying they were having stress related health issues and I just tried to say that I knew how hard it was to still stay stress free - even despite doctors orders because of my experiences with MS. I probably shouldn't have said anything.

Sometimes I don't know - do I say anything? Other times I think - well I live this mother f'ing disease every f'ing day - why can't I talk about it? Other times I'm embarrassed by it.
I really hate it. I wish to God that it didn't have to be so hard sometimes.

I'm in the best job I've ever been in with these great fabulous opportunities in front of me. I love what I do so much. I have the best boss I've ever had and a wonderful friend who means the world to me. I was meant to be where I am right now.
I have two small children who need me - a husband who's pissed I work so much and then when I'm home, I'm working, and when I'm done working I'm exhausted... ok - not a strong point.
But that's MS!! I want to be able to have it all and then I have this.

I want to be able to talk about it - but then there is some weird - I don't know - hang up about it.
Of course then there is sharing that I have this disease and having people look at me like, "What the heck is she saying, she looks fine." Then I feel sorry for myself. Then I just want to f'ing scream.

You know - things will be fine - go along just fine and I don't talk about it - then I have symptoms that wig me out - like the leg thing and also my eyes. Very blurry vision lately - but the good thing about that is wearing my "reading" glasses helps. But every time I get a "flare up" it smacks me in the f'ing face again!!?!?!?

Am I not supposed to talk about it? Am I supposed to not tell people? Am I supposed to pretend it doesn't exist especially when I'm worried the blurred vision is from it, or when my legs freaking out from it, or my hands go numb from it. ARGH!!!!!!!! It's bad enough to have the f'ing thing then to have to f'ing worry about who f'ing knows!!!!!!!
Jiminy Christmas!!!

Ok - I've vented. Please - anyone, anyone? Do you tell people? If so, what's the reaction you get? Pity? GOD - I don't want that above anything!! If anything I want people to see how much I fight instead... but then I'm a bawling baby right now - so that's kind of weak and wimpy of me.

Sorry for the big beeeaatch session and the cussing. Please share your experiences. I'm very curious how the whole "reveal" affects you all.

Hope you're all well. Please take care.

Immune System Questions

2007-02-03T21:23:00.000-06:00

I started to write this post the other day and got distracted.
I got Strep throat this week. I don't think I've had this since I was a kid. I have to say, it is truly wretched. I feel like I have shards of glass in my throat.
I went to the doc right away and got on an antibiotic, but the only thing she told me to take for the pain is Motrin and lots of it.
So, I can't eat because it hurts to swallow and when I do, it goes right through me because the Motrin is giving my stomach a run through. Ok, that was a bit TMI, I'm sure.
Frankly, it's a pretty good diet. :-)

Now, I've written a lot about the many colds and sinus infections I get. One time my neuro even said, "I'm surprised that you get so many colds." So I'm trying to figure out why. If my Immune system was working, then I guess I'd have relapses more often - and I'm talking REAL relapses. But there I have truly been blessed. I'll have systems related only to being sick or the fatigue, but nothing, knock on wood, that keeps me from functioning, well, regularly. Ok - nothing that keeps me from being able to work.

Do any of you have colds a lot? I know my kids are "carriers" as my father refers to them, but I take airborne at the sign of a cold and still get one eventually (I'm a believer - and an optimist apparently). Doc (neuro) even said that it could be dangerous to take anything that ups my immune system because I could have a relapse. But hells bells, I think I'd like a month at least without colds.

I'd love to hear your take on colds and our lovely MS immune systems.

To mdmhvonpa, I'm sure my husband would join me in the tub first - but he still may leave me there after the fact, if you know what I mean. :-) Though he did like the suggestion.

I hope you're all doing extremely well.
Take care!

5 Reasons I hate MS

2007-01-28T12:36:00.000-06:00

Invading my Calgon moments: I love hot baths and I can't take them without being sick for about an hour afterwards! ARGH!! Screw the disease - I'll take baths till I'm unable to get in the tub myself. At that point, I think my husband will put me in and forget about me then I'll just prune up and die. I'm hoping that's at 80 or later of course.
Shooting pains: They really suck when I feel them in places that you'd least expect to feel pain - like on my arm below the elbow or in the butt. Jiminy - I could be sitting still, or sleeping and I'll feel like someone just gave me a shot in the arse!! The worst has been in my right eye. MS Sucks!
The old SD (sensitive topic here): I always wondered why my Neuro was asking how it was going in the 'ol bedroom until lately!! Thinking I was having a problem because of a drug, I was researching on the Internet last night and clicked on a link in Wikepedia. In it, it talked about the lack of.. you know.. and then I clicked on that and it immediately showed Multiple Sclerosis as one of the reasons for SD. Nice. Stupid disease!!
Relapses or not: The other day I was in a long meeting. All of a sudden my foot started doing the vibrating thing again - like when I feel that rushing feeling of the blood in my heel... only this time it was all over my foot. I thought, "Am I having a relapse?" No, Pam, you're not - you nutter! Turns out it was my cell phone that I had on vibrate, which was in my purse, which my foot was up against. Gees I'm a nut.
Symptoms: I'll go to the neuro and tell her a list of crap that goes on and she'll tell me, that's normal, or oh sounds like you have a bit of arthritis in your neck (great), or forgetting stuff is all part of aging (don't remind me)... So then I'll say, well, then I don't have MS anymore, which I pretty much say every time I go to see her. I probably said this before, but the last time she said, "no disease gives you a spot on your neck like the one you have." F'ing disease!

So, there you have it - just a few reasons why MS sucks. It's not the end of the world of course. Could be worse, could be more painful.

Oh - the yoga is kinda of on a hiatus, but the weight loss is going great. I can still walk up lots of stairs and now I run up and down them at home too. I'm going to have great looking legs before I turn 40! Now if I can only get rid of the stomach - oh but I have to inject there, so I need to save some fat. So that was reason number six - MS totally blows!

Yoga, Sleep and Work

2007-01-19T23:07:00.000-06:00

Yoga has been my friend and my enemy. So, I was doing the "downward dog" pose (which you cannot say to a table full of male friends - by the way) and I went all the way down to the floor, then tried to push back up - like a real push up! Instead of pushing up my left arm pinched and I knew I hurt my rotator cuff again! Yikes!!

I kept moving it around to try to make it "pop" because that's what it felt like it needed. :-) But nothing worked.

I was also having a nasty earache so the next day I went to the doc and she said I had a nasty ear infection and it sounded like I may have a tear in my rotator cuff. Lovely.
So she wrote me out a script for Physical therapy - 3 x a week for 4 weeks.
Yeah right!! Like I have time for that.

I haven't let that get me down though. I am still walking up the stairs at work - and still breathing hard enough to prank people when I reach the top. So even if I don't exercise one day I am still exercising! :-)

As for the new job - I love it - but I'm getting really tired. I need to try to fit in sleep somewhere in this schedule.
I'm going to be gone almost all of next week traveling for work. And I have lots of stuff to do. The only thing I'm freaking on is not being able to get exams in that I need to take.

Other than being really tired - and it's not the fatigue tired - thank God - I'm really doing great!!

Oh - I don't know if I mentioned carbamazabine (Spelling - your guess is as good as mine and I'm too tired to look it up right now). I was taking that for the shooting pain that I get. Well - I hate taking all these drugs - so I was just going to try 1x a day instead of the 3x a day that the doc had prescribed. Well - I read up on this drug and it is kind of scary with the side effects and I found an article where it can cause relapses in MS patients. Nice. I don't think it's as bad as all that - because my doc wouldn't have put me on it if it were - at least I'm hoping she wouldn't. But I decided not to take it anyway. This is the chicken in me.
So a couple days after stopping it, I started getting the shooting pain in the corner of my right eye. Nice. I'm sure that's the MS pain crap.
But I've also started up on B12 again, so it's not come up that often.
Hopefully no one needs to take that medication... just so weird these drugs - they're good but they're not sometimes.

Well, I hope you're all well!! Have a wonderful rest of January... I may not have time to write for a couple weeks.
Take care!

Yoga, it's not for the weak kneed

2007-01-05T20:31:00.000-06:00

Well - I started up again! Yes - Yoga. I debated between the the "PM and Stress Relief" Video and the "For Weight Loss." Because, of course, I need the one for weight loss, but I also, most definitely need the one for Stress Relief (as the kids are screaming now while playing a game...YIKES!). I decided on the "For Weight Loss." For some reason it seems more pressing. At least when I put on jeans.

As soon as I got the mat out, both my kids came up (my 2 year old son was hysterical watching the beginning where they demo the poses and he did the "Proud Warrior" pose and it was hysterical!!) and I had to "share" the mat with both of them when I first started, but I tried really hard to concentrate throughout this video. I was working my arse off, and then the legs started shaking so bad!! UGH!! I do attribute much of that to being out of shape, but hells bells! I definitely wasn't ready for these poses. Not that "Proud Warrior" is difficult, but I think it was how long they hold the position.
I'm going to keep plugging away - but I think I'll do a couple passes of the "PM and Stress Relief" one first then I'll work my way up to the whole "For weight loss."

But good news - At the new job I'm up on the 3rd floor. The first two days I took the elevator. But the last two days I've been climbing the stairs - 37 steps. Today I walked up them 3 times! Of course I could make heavy breathing phone calls by the time I reach the top! I figure the stairs will be some of my pre-yoga prep. :-)

I'm loving the new job! I'm excited about moving forward in it as well. My new boss is awesome, I've known him for a while and he's just the best! Yes, I'm off to a happy happy!!

I hope you all had a fabulous New Year. I did. Even though I got a sinus infection (again) on Christmas Eve and it's lasted through this week. So on New Years I took some "put me out" drugs and woke up before Midnight. At Midnight I called down to my husband who has become addicted to Bejeweled or whatever it's called on MSN Games. I kept saying, Happy New Year with no response from him. Finally at 12:19am he came up and said, "What did you say? Nice. We're so romantic. :-)

Emails, Work Update and Happy Holidays

2006-12-18T21:20:00.000-06:00

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.

Wild Ride

2006-12-09T21:23:00.000-06:00

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

MS and Infection

2006-10-30T20:34:00.000-06:00

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.

Thanks for the encouragement

2006-09-01T19:19:00.000-05:00

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

2006-09-01T19:05:00.000-05:00

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?

It has been a while

2006-08-03T20:42:00.000-05:00

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

It's Two, Two, Two Posts in One

2006-06-23T20:28:00.000-05:00

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!

Sharp Pains

2006-06-17T09:03:00.000-05:00

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!!

MRI Scan brings good news

2006-06-10T19:05:00.000-05:00

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

Busy month

2006-04-20T19:17:00.000-05:00

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!!

Enough Energy to Feel Accomplished

2006-03-26T10:29:00.000-06:00

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!!

2006 MS Walk

2006-03-19T12:11:00.000-06:00

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

2006-03-19T12:06:00.000-06:00

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!!

Good Movie of the Month - not MS related

2006-03-01T19:40:00.000-06:00

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.

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!

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

2006-03-01T19:23:00.000-06:00

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!!

Feeling worse for wear

2006-02-11T15:53:00.000-06:00

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!

Shingles - ARGH!!

2006-02-07T18:07:00.000-06:00

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!!

Shots

2006-01-28T08:41:00.000-06:00

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.

Hanging in there

2006-01-15T09:40:00.000-06:00

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? :-)

Month since writing

2005-12-03T11:34:00.000-06:00

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!

New Depression Update

2005-11-05T19:16:00.000-06:00

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.

My day off

2005-10-29T19:43:00.000-05:00

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.

Still Battling

2005-10-23T18:51:00.000-05:00

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!!

Depression (plus fatigue) Update

2005-10-12T20:16:00.000-05:00

Fatigue is my daily struggle. The longer I work the more I'm fatigued. My son is heavier, so just picking him up tires me out.

For the depression I decided to try exercise, again. Funny thing about that is... I'm too tired to do it. I have been too tired the past two days. I keep thinking that laying down and crying would be easier than the exercise. It works for my kids! When they're upset they kick and scream and it works for them. Why can't I?

Because I need to show a brave face. That's why I hate this depression. I don't feel brave right now. I also feel horrible that I can't make it funny right now. I used to say, there is humor to my story of MS, but not right now there isn't. I wouldn't mind having that back right now.

I need a vacation. Maybe it's the culmination of what's gone on in the past several months. I mean, I was laid off on April 1 from a company I worked for nearly 10 years (11 if you count temp time), then I got a new job, and that's been an adjustment, believe me! Then my kids, my husband's surgery, and his icky ex wife. I guess if you look at all of that, there's some hurdles in there. But I've survived so far and I'm sure I will survive this. Gloria Gaynor, sing it for me baby!

I am looking forward still though. I've got that new neurologist that I see in November. I just CANNOT wait! I mean, maybe she'll explain the more frequent headaches, the pulled muscles. Is that a symptom? I mean I've been getting them an awful lot lately. Anyway, I have things to look forward to and the fall is my most favorite time of year. My daughter loves it and I'm looking forward to the holidays too. It will be better. But man, I guess I should get on something before we get to the winter blues! UGH!! To quote Rosanna Rosana Dana, "If it's not one thing it's another!"

Injections - a way of life

2005-10-12T19:59:00.000-05:00

You know it's pretty funny that I take injections every day. I hate needles! I loath shots!
When I was pregnant with my son I had gestational diabetes and had to stick my fingers several times a day. I remember, the longer I did it, the harder it got.

I'm thinking that's what's happening with these shots.

My Autoject was even messing me up. Sometimes I'd have the thing on my arm for 20 seconds and the red area still didn't show up in the window. So my Autoject was failing me. However, the people over at Shared Solutions are excellent and not only sent me two new ones, one is for backup, but they also sent me an envelop to send the "bad" one back in. So they can check it out and make sure they don't have this trouble again. That was great!

Now if I could get past the part where my brain actually tells my thumb to press the button... faster. Instead of me holding for a good minute and finally have to regroup because I've gotten myself into a tizzy over not pressing the stupid button. But it's nothing a glass of wine can't take care of. Well, sometimes. I try to be brave and skip the wine and many times I succeed!
Also, I have to say, Tucks pads are the way to go. Slap one on after the shot and it's pretty good at taking the sting away. Plus, having something else on your mind or something else to do helps too. I mean, hey, I'm still here, right? The shots aren't killing me.
Even in this "down" time, I'm still doing pretty well.

So I should LOVE these shots! They just kind of suck.

Thanks for the kind words

2005-10-12T19:58:00.000-05:00

Thanks to everyone who commented about the depression. It's really encouraging.
I hope my posts can be encouranging too. I'll try my best.

Riding the Depression Wave

2005-10-02T14:29:00.000-05:00

Well, it's finally hit. I've reached that "depression" part, or at least I'm giving into it.
So much has hit all at once that I guess it was inevitable.
Personally, my 5 year old daughter has become more and more of a challenge, very strong-willed but to the point of tantrums constantly. I think, God, why? I'm so tired I can't deal with this!
Then even my 15 month old son throws tantrums. But his are funny, for now. I just hope his continue to stop quickly. All you have to do is chuckle and then he'll stop and chuckle too.

My husband's ex has made our life miserable, but at least his kids respect us more than they do their mother. That's always a plus, especially when I'm already too tired to deal.

Work is so stressful and my son has been sick constantly! So I've had to work from home, which has caused me to work longer hours. And my boss isn't happy about it. I've only been there since June and I've already used up most of my vacation/sick. I just keep pushing through the fatigue. And ignoring all the weird things going on.

And then I cry. I cry because it seems like there is NO TIME to do anything. Like something is happening and I can't control it. Then I have no time with my daughter, we end up battling instead.

And the shots! I'm nearing a year of these lovely things and suddenly it's harder for me to push the button on the Autoject now then it was when I started. I don't know. Maybe that part is all in my head that it's scaring me now then before.

I'm also anxious to see this new neurologist. I can't wait and I still have till November 22 for my appointment. Which I made in April. I hope she's that good, as everyone tells me.

I am disappointed in myself! I just can't believe I'm actually letting this get to me and I swore it wouldn't. I told myself not reading too much about MS would help me to move away from it. Maybe that wasn't a good choice.

My daughter actually told me yesterday that she was afraid she'd have to take shots everyday when she gets older, like I do. I don't know how to make her feel safe. I just know I don't want her to get MS. I worry when my son gets too hot that he's going to have a relapse. He's only 15 months and doesn't have MS, why do I think that way. I try to keep my daughter from getting over heated. I get paranoid when she says, "My heart is racing." Not that racing heart is a symptom of MS, but that she might be sick with something else. Oh my goodness, I can't even explain that feeling of hopelessness, not knowing how long I can be there for my kids. See, that's the depression. All this doom and gloom.
I'm sorry, this isn't the most positive blog. But hey, I'm still hanging in there.

Take care, all. Keep smiling. Don't let it get you. I know I'll come out of this too. Just a culmination of so much at the same time, I'm sure.

A word about Katrina

2005-09-05T15:08:00.000-05:00

No, this particular post is not about MS, but I have to ask, could you imagine having fatigue or any other MS symptom and being stuck on the roof of your house for an hour let alone 24 or 48 or 64? I look at my kids this week and cry for the mothers of the children who were dying of hunger this week. I look at my husband who just had surgery and think how horrible it would be for those people who have had recent surgeries and had to try and get out of their house away from flooded areas. I just can't believe how horrible a situation they had there. And how late help was at arriving. But the worst thing I heard all week was what I heard Friday.

When I was at the hospital waiting for Bill during his surgery I met a woman who I thought was really nice. She's from Southern Missouri and she's older. I told her about my kids, about my MS (don't ask why I tell people, I never thought I would before, but I do now), she told me about her work and her husband and their farm.
After our husbands went in for surgery she and I went to the cafeteria and ate and talked together.
Then we went back up to the waiting room and for the brief time we were there before going back to see our husbands she said this, "Looks like God is trying to tell them something."
Huh? What could that possibly mean? Why do idiots have to speak after a horrible tragedy?!?!
I didn't even know what to say.
I just sat there and looked around the waiting room to see if anyone heard the same idiotic statement I just heard and then she told me how her ex husband had gone there and it was just a bad place.
Okay, so I have only been to New Orleans once, when I was a Junior in High School and I loved it. I went with my folks who have been there so many times because they loved it.
I never experienced "the bad" which, excuse me, happens in every city in America.
But why would anyone ever deserve that? Why would God be so angry he'd kill thousands of people? What kind of dumb statement is that?!?!? It just makes no sense to me. It's just plain stupid!
I then said, "What about the children and the elderly?" and she couldn't say a word. Whatever!

There are children and elderly who died this week. There are women who were raped, people who were drowned. What she should have said is, "Why didn't anyone get there the very next day to help those people?" not say, "God's trying to tell them something." What would that something be, that their government didn't care about them? That no one cared?
It just ticks me off to no end!

On 9/11 a woman at my old office said, "You gotta hope those people have given themselves up to Jesus." When I asked why, she said, "Otherwise they're going to hell."
What the BLANK!! I was in pain that day and for months afterwards, just like a lot of other people. And for years since I have NEVER forgotten what one woman said. No one deserved to die that day, not the way they did! And they didn't need anyone to curse them in their death.

Just like no one should curse these poor people who have died and suffered from Katrina!
There are really people out there who are so hateful and vengeful! The same people who said they're glad I have MS, those are the kind of people who make themselves holier than others and think that they're better. They're also the same ones who will be the first to say, "Where's mine?" when they're in need! And those people think they are actually more worthier then others. Well, not to me. Not that it matters what I think, but the people who this week "looted" stores to get food to feed BABIES and ELDERLY. Who stole food to give to OTHERS! And not just keep for themselves! Those are the people who deserve good. They deserve a thank you, a thank you for hanging on, and being there for all those others. They also deserve an apology for every dumb, idiotic statement someone stupid made this week.

Stress Factor - The Game

2005-09-05T14:41:00.000-05:00

Stress factor 1: I was sick all last week. Still have the cold, but it's kind of diminishing. But I went to work on Monday even though I felt awful, then I left and worked from home. Thus making me work until about 7:30 instead of resting.
I worked from home on all the rest of the week, except on Wednesday when I could barely get out of bed.
Having a virus and MS, I think that's a recipe for extreme fatigue.

Stress factor 2 and 3: Friday woke up to find my son had the "d" word so he couldn't go to daycare. Called the folks to ask if they'd come earlier and kept both kids home for my folks to watch while I took my husband, Bill, to the hospital for his surgery.
He had the hernia surgery and we were at the hospital till about 6pm. So that was an all day thing.
Now I need to take care of everything in the house. Bill can't do anything because of the surgery, except shout at the baseball game, of course. :-) So I think just the thought of the everything is freaking me out. Should I cut the lawn? Or let it grow? How much can grass grow in a month? If I were to cut the lawn, now is when I should while my folks are hear to watch the kids. Or do I come home from work to cut the lawn and leave the kids as daycare till I'm done?
Decisions, decisions!

Stress factor 4: My daughter. She has been good in the mornings and not in the afternoons, until this morning, when my stress level hit it's peak. I feel so bad for her because she's so jealous of her little brother, but is so awful to him that it's really hard to be there for her when she's being like that.
My parents are helping, but they leave tomorrow. I don't know how much I'll be able to put up with after a long day at work and having to bathe all three of my kids.

Three you say? Yes, when I have to also bathe my husband, I have three kids!
But, it's all payback... Hopefully if I ever need it, he'll wash my butt too one day! LOL!!!

Stress Factor 5: Had another site reaction last night. It was quick, but I think it was a culmination of everything. My face got really hot and flushed and I had the tightness in my throat and neck. I did my almost cry thing and sat back, Bill helped get me distracted by putting something interesting on TV and then I was fine about 15 minutes later. Whew! Still hate the freaking things, but if all I've had problems with is fatigue since being on that crazy drug, then I'll take it.

Okay, so the little girl just woke up from her nap, which is a feat in itself, that's a plus. And she just made me some coffee from her Mrs. Potts tea set. She's the cutest darn thing in the world. She and my son make me smile and cry all at the same time.
How can that be? How can kids infuriate and then just be the best joy you'll ever know? I would never trade it.

Yes, I'd prefer having to take care of everything when I'm not fighting a cold and when I'm not so fatigued, which could be from the cold, and without kids who are so argumentative, even my 14 month old is argumentative and he can't talk yet! :-) But how boring would my life be? Plus, I think every challenge I face since I've known about my MS, just makes me push that much harder not to let it take me over.

Stress

2005-08-28T10:36:00.000-05:00

So, stress is a bad thing for anyone and really bad when you have MS. Naturally, I've had additional stress this week.
My husband and I had an issue with his ex-wife and her new husband. Apparently they don't like it that we don't want to handle the problems they have with the kids when the kids are at their mom's house. They don't like that we don't want to get involved because the kids do not behave that way at our house. So this whole situation came to a head when my step-son threw a huge temper tantrum, at 11 years old and the step-dad called us screaming at us to take care of it. We hadn't seen the kids in two months. I got mad and said they created this monster and needed to take care of it themselves.
This made them so mad my husbands ex-wife told me that someone, she didn't tell me who, is glad that I have MS.
Nice.
In the meantime, I've been crying all week and fearing having my step-kids over because I said, "How can we have a relationship with them when we're under scruitiny by their Mom and Step-Dad?"
My husband wasn't looking forward to it either, however, my daughter said, "Don't they love me anymore?" When another week went by and she hadn't heard from her brother and sister.
It tears me up!!

I need to have less stress, I really can't stand it anymore!
I mean, I'm not having major symptoms, except for the fatigue and wanting to bury my head in the sand, but the shots must be helping. I'm on week 40 of the shots too, so that's a good thing. It's just that with everything, the shots just don't seem to be getting easier. But maybe that's the stress. UGH!!! :-)
It will get better, it's really got to get better!

Too Long since writing

2005-08-17T20:43:00.000-05:00

Oh my! It has been a long time since I "blogged". I didn't think I had any readers so I was surprised to see that I had a comment. Thanks for that.

Anyway, I've been so busy. I started a new job on June 6 and I've been so busy there. I work tons and stress a lot and it's probably the worst environment for me, but I actually like what I do.
Aside from it keeping me from my family, it's not too bad. Oh, and the fact that it's like a frat house there.
"Other than that Mrs. Lincoln, how'd you like the play?"

My MS is okay at the moment. I'm a little sore and tired and feeling all sorts of weird things lately, but I'm trying not to go back to my current neuro. I'm waiting to get in with a new one. My goal is to go to someone who gives a crap and who's staff actually give a crap and who actually have an education.
I needed some insurance paperwork to go through and it took them about TEN weeks to get it. Ridiculous!

Anyway, I'm worried about my husband who's had a health issue come up yesterday, as a matter of fact!! I am a little scared! And with our small kids, this just isn't the time.
But other than the health stuff, I'm happy and in love with my husband and my kids. And yes, even when my nearly 5 year old daughter is driving me absolutely crazy, I still love her!!
My son isn't walking yet, but he's getting closer. He's 13 months old now and just cute as anything. He's a real snuggler!! What can be cuter?!?!

Oh... the shots, sometimes just really hard to do, but I've resorted to having a glass of wine before hand... sometimes I even skip that.
I have recently started doing a trick my husband and I taught my daughter for when she got her shots recently. Take a deep breath and blow out really hard! It kind of works, believe it or not. Anything to take the edge off and get my thumb to push the dang button! :-)

For anyone reading this and wanting to know how hard it is, I just have one thing to say, "Just do it!!" And again, my diatribe of switching sites!! It's important!! I couldn't imagine being even more pin-cushiony in areas just because I didn't switch off!!
So go for it and good luck!!
Oh... and since I'm not doing too badly, I'm thinking, hey, it's working!!
I'm signing off... I have to go enjoy our new, big, lovely bed!!
Good night!!

Weird MRI experience

2005-05-18T10:49:00.000-05:00

I had my fourth MRI. It's not the Open but it's not the original closed where the tunnel is really small and long, but the tunnel opening is a little wider and it's not so long.
I was having a pretty good day yesterday so when I was first pushed into the tunnel, I saw the light at the end, or the rays from the light. I said to myself, "Okay, I can see the light at the end of the tunnel." Then I promptly started crying. I'm not sure why. It was probably a culmination of everything going on with me in the last couple of months.
I couldn't stop crying. It would get worse during the noisier passes of the machine. I really hate it! It's so intimidating.
I probably have said this in a previous post, but I have seven screws in my jaw and I still worry about them flying out through my body and killing me during an MRI. I know... I'm still a kid in my head!
The technicians at this place are so kind! They're great guys who I feel so much better knowing their out on the other side of the window in case I need them. When the first technician pulled me out after the first series of scans I said, "I don't know what my problem is, I keep crying." And he said, "Crying! Well, we'll get you taken care of here." Then he made sure to tell me how long each scan was and what was coming next. I guess to better prepare me. I just don't know why it was so hard yesterday. Maybe feeling sorry for myself.
I should find out today the result... I need to renew my Copaxone. That's waiting till we get the results.
I don't know if anyone's reading this. So I may not keep this blog up. Maybe I'll just convert everything to a diary for myself. Who knows!

It's Mother's Day

2005-05-08T13:05:00.000-05:00

I'm not sure I have an audience at all, but if there are mother's reading this, then Happy Mother's Day!

I think my husband is thinking I'm taking this Mother's Day thing too far, becuase I'm so tired today!! And taking a warm bath was the wrong choice, now I'm even more tired. But, it was so nice! I can't not take my baths no matter how fatigued or whatever they make me.

Anyway, gotta go give the Willster his bottle! Maybe he'll take a nap with me.

Again, Happy Mother's Day!

My Balance Ball

2005-05-08T12:56:00.000-05:00

I've got a new toy! After all my attempts at trying to get into a Yoga routine, I decided to add a balance ball to my tribulations.
I love it... I can lay over it, and I mean, LAY over it... and do exercises and sit on it at the computer! HA!! I'm not sure that's it's purpose, but it's more comfortable then this butt-rotting chair I use currently sit in.

So, in my first attempts at the exercise, I was bounced off of it, rolled around by it, and I'm not a little person! I also was extremely glad not to have witnesses, because I would not have been mistaken as graceful, that's for sure!!

I also decided to try to do the side stretch over it without watching the instructions first... I'm not sure how to put this eloquently, but I'm sure I looked like a sack of potatoes being tossed on an oversized water balloon. With only my legs to keep me steady, and MS legs, are not exactly the steadiest, I was walking the room sideways, just to keep my balance.

I demonstrated this exercise to my husband and 4 year old daughter later that evening just to give them the show. They enjoyed it! Now my daughter bounces the ball all over the house and my ten month old tries to pound on it, while trying to stand at the same time. It hits him in the face and he giggles away.

I purchased a balance ball for my daughter so she can do exercises with me... but I recommend it mostly for laying over and relaxing! It's wonderful!!

Something new I've learned

2005-05-04T13:46:00.000-05:00

Well, first off, I don't know if anyone's reading this, so I don't know if I'm helping anyone but myself here.

But I found something out while painting today. When I use a regular brush my right hand starts to go numb. Maybe it's the MS, maybe it's carpal tunnel... who knows. But I found out that when I use the cheap, sponge, disposable brush I don't have the numbness.

They have a round handle and it's smaller, so maybe that's it. Who knows. Just thought this would be a helpful tip for anyone who's experienced the numbness while painting.

About Blogging- What I've learned so far

2005-04-30T18:28:00.000-05:00

I can talk and talk and talk on here but no one's going to read it. Or they wouldn't until now, I hope!!
I have been learning about adding my blog to blog directories. This is all very new to me, even though I've been an Intranet developer for over eight year. Of course, that was INTRA not INTER. And I'm also using a template... goodness!! Never thought I'd do that. But it's easy!
I'm liking this blogger.com.

Oh, and just an FYI - today I had a horrible time with fatigue again... not sure what's going on there. But I felt like I ran a marathon! My poor husband. What he has to put up with and then he even lets me get on here and type away!! Good man!!

Taking Injections

2005-04-30T10:34:00.000-05:00

I have been taking Copaxone injections since November 2004. I have to take them daily. I was scrared to death to do these shots and had considered taking the weekly, but that's intramuscular, so that was out. Then I considered the every other day, the three times a week and the, I don't know, other one that's NOT daily. But they have side effects of depression and having just had another child, that's just not even an option. So I went with the DAILY. I hate shots! I HATE THEM!!
But, these are not so bad. I had ONE bad Post Injection Site Reaction. It was horrible, I thought I was dying. But it was gone as fast as it began and I'm still here to talk about it. I can prepare for them. I just think my reaction was so bad because I thought I would have had the reaction sooner than I had. I may have it again, or I may not. And I'll just be prepared. No biggie. What other choice do I have? Right? It's a control thing! I like that I had a choice to begin with. But 'ya know, I sure do wish they'd come up with a pill form that works!! Who doesn't?!

Anyway, I switch off my injection sites. It's like the Macarena, or that Pepto Bismal commercial.
Starting Mondays, abdomen, right thigh, left thigh, right hip, left hip, right arm, left arm, "Pepto Bismal!" I'm so good!! I was so proud of myself for switching off!!

I've only missed two injections. Once because I was sick with the flu and KNEW I was going to vomit, so I just couldn't stab myself while having that feeling too! The second time was because I forgot my injection when I went to my folks house.

Ever since I had the PISR - HA!! What an acroynm! Anyway, every since I had the Post Injection Site Reaction, I try to be really calm, sometimes I'll drink a glass of wine or a beer. I make sure my husband is in the room. Though I was able to take my shot yesterday all by myself, well, at least by myself in my room. I do the whole routine, ice, but not till my skin dies - horrible!! Ice is almost worse than the shot itself. Then I do the shot, then I have a large container of Tucks Medicated Pads! Yes, I put them all over my body! The guy at the Pharmacy must think I have a horrible case of roids! But I use them for aftershot sting! It really helps!!

Then I have lumps and itching and bruises all over my body. It's kind of fun to try to name the injection site by week!

Yes, I HATE THEM!! Did I say that already? However, I really think it's helping. I still have fatigue, and after talking to a friend with MS last night, we figured out that our stress is causing our latest symptoms. Plus it's hard carrying around a 22 pound baby boy! It's tiring already. God, he's cute!! But I digress, I've been stressed from being laid off and worrying about money and not really eating well. Though the plus side to that is I've lost as much weight as my boy weighs!
So I'm sure all of that stress is causing my fatigue. I've been having really bad numbness in my right hand, I'm sure painting doesn't help that.
I have an MRI on May 17th and after that we'll figure out how I'm doing. I'll just wait and see.
Afterall, till there's a cure, I'm on injections. Or solumedrol, but that's a whole other story!

No Job For You!

2005-04-30T10:29:00.000-05:00

Okay, since I found out I was being laid off I've been on five interviews. One place had me come back for a second and I thought for sure I had it. I found out yesterday I did not get it.

In fact, listen to line of rejection through out the day.
First, I found out I wasn't getting the job, then the guy who was supposed to come and give us a bid on tiling our backsplash doesn't show up. Not only did he not show, but he also told my friends who recommended him that he never talked to me, that he didn't remember me. HA!!

Then I couldn't even get the guy who gave me a bid to paint our stairwell to call me and tell me how much it would cost, and he said he'd call on Friday (yesterday).

Then I had to reschedule my girls poker night because everyone was backing out! UGH!!
The best thing is I went to a Pampered Chef party and I'm thinking if I don't get a job soon, I'll start selling it. Who knows!
Actually, the best thing was having a glass of cheap wine that made me feel very happy! HA!! I'm truly a light weight!!

Background

2005-04-29T21:48:00.000-05:00

Okay, so I started by telling you I have MS and how I found out.
Here's a little background since my diagnosis.

After we found out I had MS, I decided to walk in the MS Walk in St. Peters, MO. That was the first year we founded Pamela's Team. My sister, who does graphic design, created the t-shirts and has every year since. We did our 3rd walk this past April. We're not raising as much as we'd like, but we're going to do better! I'm thinking about doing the Challenge Walk next year. That will be my big feat!

I also gave birth to my son in July 2004. We decided, after almost six months of debate to have another child. I wanted to so much and I'm so glad we did. My kids are wonderful, beautiful mysterious creatures and the only thing I hope is that I have MS so they don't have to have something like this! I want them to stay healthy!

Also, last November I started taking Copaxone injections. Yes, they are the DAILY ones!!

Finally, the second Thursday of March, I found out I was being laid off. I was the Intranet developer for my company, the only one... with a back up person in the headquaters location. I was remote, so out of site, out of mind, I guess. Anyway, I was officially laid off on April 1... see, my life has LOTS of humor in it!! Unfortunately, they didn't say, "April Fools!" to me! But I'm glad. It's been a rough month, but I've been doing lots of painting in my house and work to make it a beautiful home and if necessary, a beautiful home we can sell. HA!! But that's only if I don't find a job soon!

I decided to start this blog to talk about my MS. Maybe it can help someone else. There is humor in everything. If you don't dwell on the sad and doom of it, then you can smile and say, "Hey, I have that and I'm okay!"

Pinched Nerve or Multiple Sclerosis

2005-04-29T21:22:00.000-05:00

In the Summer of 2001, I was having a strange feeling when I bent my neck forward. I thought it was a pinched nerve. Because when I bent my neck forward, like to rub my neck or something, when I moved it more to the left I would feel this electric shock sensation. It went down my left side into my left arm where I would feel the tingling and numbness in my middle three fingers.
It also went down my left leg, into my foot. There I felt weird stuff going on, like I could feel my blood circulating in my heal... so strange.
Also, there were times when I would feel such a strange tightness in my neck that if I gave into it, I felt like my head would fall off. Such a funny way to describe it, but that's the best I can. I know, I sound like I'm a 4 year old complaining of a pain. "My head would fall off?"

Anyway, I went to the doctor and told him I thought I had a pinched nerve and told him everything that was going on and he said, "Well, it could be a pinched nerve or it could be MS." Then he told me a little about MS and said, "You're not going to get scared on me, are you? I didn't tell you for you to get all worried." I, very bravely said, "Oh no!" And snickered like I was totally fine. All the while I was feeling like, "Oh my GOD!! It's Annette Funicello! I'm not going to be okay!!!"

I really had no idea what MS was. But I went back to work, crying the whole way, and then I got on the Internet. No, I did not look at BLOGS, I went to the National MS Society web site. I recommend that for everyone!! Don't go to emotionally charged sites to find out if you have something wrong with you. Look at facts only to start!!! When you're ready, like I am now, you can go to the emotional side!

I read about the symptoms, these are the ones that made me start!!

Blurred vision in one or both eyes, usually not at the same time.
Numbness in hands and feet.
Unusual fatigue.
L'Hermites sign, the electrical shock sensation.

I was sitting at my desk going, "oh my GOD! I have had all of this." Two years before, in 1999, I had blurred vision in my right eye. I went all the way to a Retinal Specialist who couldn't explain what it was from or why, but he said, "It will go away." Not sure how he could be so sure, but he was right. It went away. As soon as he said it would. So I didn't think anything more about it.

I had the numbness and the tightness in my neck and went to a horrible doctor who said I was stressed and needed stress management. But she still sent me to a horrible neurologist who said I needed stress management. I then got pregnant and everything went away. So, of course, I didn't think anything more about it.

My daughter was born in August of 2001, I was so tired I felt like a horrible mother. Turns out, that was more than likely MS. So after looking back at all my past symptoms, I called my doctor and went back to see him. We talked and he sent me to an MRI - I won't go into that experience because I don't want to scare anyone, but by all means, try for the "Open" or larger tube ones... the original ones are just awful.

I was afraid to go because in 1995 I had jaw surgery and I have 7 screws in my jaw. I thought the MRI was going to rip my jaw off!! I'm laughing as I write this!! But man, did I do research on what's in my jaw... they're titaneum and those aren't pulled out by MRI's. Thank GOD!!

Anyway, after a successful read from an MRI, I went to a neurologist... this all took from September to November 15, the day my Neuro told me I had MS. I sat in the exam room and started crying. Then I called my husband on the phone and said, "Don't call my mother." He thought I said, "Call my mother!" I then spent the rest of the day "dealing" with this news and taking care of everyone else. It was very appropriate.

It was a really long weekend... I found out for sure on a Friday. My step-kids were over that weekend, my Mom came into town, I was not alone, but I sure needed to be. I ended up taking care of everyone else and at the same time having mini breakdowns in my head.

Such an extreme in what that diagnosis could have been, either pinched nerve or ms. Who would have compared the two? That's just crazy!! :-) All in all if my doctor was Alex Trebec I would have responded with, "I'll take pinched nerve for $1000, Alex!"

But alas, he said MS, my neuro said MS and now I say, "I have MS." And I'm doing pretty darn good!