Thursday, December 13, 2007

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!!

Sunday, October 07, 2007

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!

Saturday, September 29, 2007

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.

Sunday, September 09, 2007

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!

Wednesday, June 27, 2007

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!

Wednesday, May 30, 2007

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!

Monday, May 28, 2007

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!

Friday, April 27, 2007

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!

Saturday, April 21, 2007

The Craze Has Died Down

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!!

Sunday, April 01, 2007

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

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!

Sunday, March 25, 2007

Fast approaching 40

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!!

Tuesday, March 13, 2007

MS questions from a 6 year old

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!

Wednesday, March 07, 2007

Do you tell people you have MS?

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.

Saturday, February 03, 2007

Immune System Questions

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!

Sunday, January 28, 2007

5 Reasons I hate MS

  1. 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.
  2. 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!
  3. 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!!
  4. 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.
  5. 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!

Friday, January 19, 2007

Yoga, Sleep and Work

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!

Friday, January 05, 2007

Yoga, it's not for the weak kneed

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. :-)