Affirmations & Frustrations

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

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

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

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!!

That Shocking Feeling

It's baaaaaaaccccckkkkk...... :(
I've been having painful things, fatigue and what not for the past couple of weeks. I had also started noticing, just a little - very slight, the electric shock feeling when I bend my neck forward. This weekend I just started noticing it more. It's not the feeling I had when I got diagnosed. That one would radiate down my left side, into my arm and fingers and down my leg to my toes.
This time it's more isolated to my back and when I'm sitting it moves from there to the top of my right thigh.
I've also had this horrid sharp burning pain that goes from the shoulder area up to the base of my head on the left side of my neck. And I feel it through my arms in places too. Like I will feel that feeling in a very, very dull form starting in my arms and shoulders and then it will go away. Then out of the blue I'll have that burning pain and it does me in. I feel exhausted after it. And sad.

I am very sad right now. I want this to go away. I want MS to go away. I hate MS.

I'm back on Neurontin in a progressive way so the fatigue side effect doesn't just lay me flat - not that the current fatigue isn't doing that already. The nurse wants me to try for 9 days to see how it goes. So in 9 days this will be over? In 9 days I'll have an idea if this was just a pain thing or a relapse? What's the difference between plaque on the spine and a lesion? :( I should know this by now.
I just am trying to get through today really. I need to. It's not been a good day at all. Well, or yesterday. Just really sad. This stuff always makes me really very sad.

I hope everyone else is a thousand times better than I am right now!
Please take care.

What's to look forward to?

I've been wondering about this blog. Like should I keep it? Does it help? All those things.
But the big one is the title "Looking forward with Multiple Sclerosis".

When I first started this I'm fairly certain that I was saying I was looking forward to things even though I have MS.
I still am - but never really thought of all those things I'm looking forward to.
Here are a few things that I've been thinking of lately - but I've categorized them.

What I'm looking forward to in my life:

1. My kids to stop fighting some day. Which they're doing now.
2. My kids to fight intelligently - without the sticking out of the tongue.
3. My kids to keep learning and doing so well in school.
4. Will to start kindergarten this year.
5. Kate to be that great big sister she has been and is becoming more of. Much more tolerant then before.
6. Both of them to graduate from High School, then College!
7. 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.
8. I really can't wait till I can pay off some bills.
9. Looking forward to the economy improving - can't help adding that - it's a current worry.
10. I want to get the beagle in agility classes - looking forward to her doing well at that. She's a smart puppy!
11. Being able to spend time with my best friend.
12. Being with my folks!
13. Playing with the kids.
14. having our team at work doing really, really well. :) Can't help that one either - it's a current want.
15. 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:

1. A cure!
2. 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. :(
3. Even if I still have MS - taking Oral medication instead of the shot.
4. Have I mentioned - not having to take the shots?
5. 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.
6. Not having grossly indented skin - worse then cellulite.
7. Not being soooooooooooo fatigued all the time.
8. Being able to wake up from a nights sleep and not feel like I need to go back to bed forever.
9. Being happier.
10. No more excruitiating sharp pains that come up my neck into my head.
11. 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.
12. No more feeling like someone's using a VooDoo doll with my name on it.
13. I could go on and on.

What I'm looking forward to with MS:

1. 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.
2. The next Webcast on dealing with symptoms and hearing about the latest research.
3. Hearing about people who have had specific treatments for MS and are doing so much better.
4. 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.
5. 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.
6. 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

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

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

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

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

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

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!

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

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

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

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

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!

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!

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!