So It Is True

Today I got my proof that stress is no good for MS. I already believed it but I hadn't really experienced it clearly until today. If you're not my friend on Facebook, here's some of what you've missed.

Posted Sunday at 9:20am

Dear Neighbor,

I am not going to bitch you out after discovering nearly one hundred cigarette butts in my yard and only ONE in your yard. However, after I am finished raking up all your crap and my sun-dried mulch, I will take note that there are NO MORE butts in my yard. AND, if I find one, YOU WILL KNOW! Take care and enjoy your Sunday!

Sincerely,

Your Annoyed Neighbor


Posted on Monday at 8:30pm

Boy-oh-boy! I'm living next door to a cult. A screaming, singing at 8pm in the backyard, always giving me their opinion, my dad can beat your dad, Ms. Smarty Pants 9yr old, my goodness is that cement on your window from our new walkway, cigarette butt throwin', how do you like the new muscle on the block (referring to his POS truck), hey I did 15 minutes on the ellipitical today, CULT!


Posted Today around 10:30am

UNBELIEVABLE!!! My neighbors son is sitting on the fence between our houses encouraging Kouma to bark. WTF is wrong with these people! And why the fuck isn't he in school?!


So there you have it! I live next door to STRESS. Today was the day that did me in, that made me say, "Dang, stress really does mess me up". After giving the "little juvie" (as my friend so kindly referred to him as) the evil eye, he finally got off the fence and retreated back into Pee-Wee's Playhouse. Not even a minute later my vision was freaking out and a headache was forming in my favorite spot, right temple. Ugh!!

Now, two doses of Extra Strength Tylenol and 9 hours later, it's starting to wear off. I put my glasses on to help ease the desire to rip my eyeballs out of my head. Because really, who wants to ruin a perfectly good pair of contacts. Anyway, it seems to be working.

I am so thankful for my wonderful hubby who bears the load of the stress in our lives. And tomorrow, I'll have him all to myself, in a meeting, with lots of other people. More on that later. Maybe.

MS Moment

I had a moment last night, let's call it an MS moment. I grabbed my notepad that sits beside my bed and I started to write. Here's what I said.

"I'm not happy at the moment. It's 8:30pm on Thursday night and I'm sipping on a glass of wine and pondering my current predicament. I've just returned from a one hour pilates class and I feel beaten. What makes this feeling worse is that I've been exercising daily for the past 3 weeks, trying to get my body in TIP-TOP shape.

I thought I would kick ass in this class but it was quite the opposite. My legs felt weak and my lower back was burning. A feeling that can best be described as though it were like my muscles were beind ripped away from one another.

I know what people mean now when they say it feels like their legs weigh a thousand pounds. It feels like each one of my legs weighs one hundred pounds. No joke. Is it MS? Is it just fatigued legs from all the work I've been putting them through. I'm betting it's all the hard work but who knows.

Having this feeling has made me angry. I feel weak and incapable and it's pissing me off!

Tears. Tears. Tears.

And I'm done."

Last night I was really concerned that when I woke up, I wouldn't be able to walk. I definitely think I was over-reacting and being way too hard on myself. Of course, this morning when I got up, I walked just fine. I'm still extremely sore but I'm pretty positive now that this is because of all the working out I've been doing.

I was sad because I felt bad for those who have this pain and inability to walk for days, weeks, months, years, and maybe even for a lifetime due to MS. I seriously hope it never comes to that point for me. And I hope that a cure is soon to come for those who are much worse off than I.

MS Walk - Shorty on the Dance Floor

We had a BLAST at our first MS Walk, which you can surely see.

Thank you to EVERYONE who donated and to those who walked with us on TeaMSarah.

Enjoy the pictures & video.

Watch It - I Can Make You Vibrate!

I was sitting in my mother-in-laws home the other day and her vertical blinds began to vibrate. I looked away, looked back, and they were still vibrating. "WTF", I thought. That is some freaky shit.

I turned to the hubs and told him, "I think I really do have super powers".

I can make things vibrate, and send those vibrations through my body sometimes. Hear bells and whistles in my ears, create new words to fill in the ones I miss forget. Man, I'm awesome! Oh, and I can make spots appear. Black and Gray! How about that? Ha!

I have many other super powers but if I tell you, I'd have to kill you.

MS is Really Starting to Piss me Off

Today has been one of those day's, ya know! A day when everything else wins and your willpower, strength, and determination, is no match for the bullshit in your life.

I'm not here asking for a pity party, or even to say that my kick ass attitude is no more. It's just another one of those "I am Human" posts that after I've completed it I feel so much stronger. It's sort of like talking to a shrink. They listen, don't talk back much (other than the occasional question) and in the end, you feel like a thousand pounds have been lifted off your shoulder.

Thank you blog. For being so therapeutic for me.

Today, I have written in my MS Journal more than I have all year. Tons of new symptoms, weird ones. The reality hit me today. Until today I thought, "I'll just ride out the rest of my life with Mr. MS on my shoulder. He's not very bothersome, other than the occasional migraine and stabbing pains in my feet, I can handle him. He'll remain dormant for most of my life, only causing trouble here and there, and I can handle that."

Today I thought, "Fuck! Am I going to be one of those people? One of the MS'ers who's symptoms are actually visible to the public. Someone who can't manage on their own." Ugh! It sucks to be in a funk but it happens.

Hello funk! How are you?..... Really? Well, beat it!!!

I'll be calling my neuro tomorrow if I wake up for a second morning with numbness on my face. Nice right? That's a new one. The other day I also had a feeling on my right shoulder that felt like someone had shoved me. Then that shoulder went numb, only lasting a few minutes but still enough to notice and make note of. I've also had tingling on the bottoms of both feet, and a static feeling moving all over my thighs (front and back) and on my butt.

That's 4. FOUR! Four new things written in my journal between the 19th and now.

Ahhhhh....I am done venting. My honey brought home some chocolate and merlot which is not good for the body but it's going to do wonders for my mind and my soul. Thank you baby.

Faces of Multiple Sclerosis

Just a few of the beautiful faces living with MS

In honor of MS Awareness week, I thought I would put together this collage of a few of the wonderful people I have met who are living with MS. A few facts about Multiple Sclerosis...

1. There is NO cure. That's why we must raise awareness to find the cure and save future men, woman, and children from hearing the devastating words, "You have MS".

2. Multiple sclerosis is a chronic, unpredictable disease of the central nervous system (the brain, optic nerves, and spinal cord). It is thought to be an autoimmune disorder. This means the immune system incorrectly attacks the person's healthy tissue.

3. More than twice as many women as men have MS.

4. Approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people.

5. In rare cases MS is so malignantly progressive it is terminal, but most people with MS have a normal or near-normal life expectancy. Severe MS can shorten life.

6. MS is not contagious and is not directly inherited. Studies do indicate that genetic factors may make certain individuals susceptible to the disease.

I decided to do the collage for two reasons. One was of course because it is MS Awareness week but the second reason is a little deeper than that. When I was first diagnosed with MS, the first thought in my mind was, "I'm too young for this shit!" And I know that many people who are diagnosed everyday feel that same way.

I wanted these photo's to show you that Multiple Sclerosis is not biased, this disease happens to everyone. Young, old, short, tall, all ethnicities, all walks of life, everyone. There are no children in this collage but believe me, there are many who are faced with an MS diagnosis at a very young age. The youngest I heard of was only 8 years old. My son is 8.

So for our sake, and the sake of others, do us a favor and make a small donation to a worthy cause. I happen to know someone who's working on raising funds (wink, wink), and you can make a donation directly to the National MS Society on her behalf right HERE.

What Is Multiple Sclerosis - Short Video

Neuro # 3 - Whatcha Say?

I have to say, Neuro number 3 is the best so far. Although we waited 40 minutes in waiting room number two (aka the exam room), it was worth it for someone who gave us his attention and didn't rush us.

He asked me some questions and got caught up on my current stats. Fatigue. Ringing/Buzzing in Ears. Vertigo. Blurred Vision. Heat Sensitivity. Dazed Vision. The list goes on and on.

We asked a few questions, and I even asked about CCSVI, which he was very familiar with. THANK YOU! I don't care what your view is on it but if you're a part of the MS community, especially if you're an MS Specialist, and you haven't heard of CCSVI, I'd rather not deal with you.

He gave a gracious opinion about the works going on with CCSVI and thought that if it is truly something that could help patients with MS, he would be elated.

I brought up my fatigue, my new found symptom that's probably been around for a while but what I'm just now admitting to. He offered me a drug (can't remember the name, sorry) that comes with two very specific side effects and one benefit.

The Benefit - It's used to fight the flu. So come flu season if I'm still on it, I won't need to get my flu shot. Doesn't really matter to me anyway since I've never had a flu shot in my adult life.

The Side Effects - Brace yourself. Number one: Your legs will turn blue. LMAO! Yes, blue. He even said that it would look like I was wearing blue fishnet stockings. Sexy! Sexy! Number two: I will have a very specific dream. The dream will seem as if someone is looking in my bedroom window.

When he said that, the hubs said, "Nope!". LOL!

(Little info about me. I am very aware of my surroundings and extremely guarded, you can say, when it comes to people knocking on my door, walking behind me, whatever. If you knock on my door and I don't know you, you can assume I'm packin'. LOL! Simple enough, I will not be a victim and MY children will not be victims either. PERIOD.)

So when the doc said that, the hubs said, "I don't want bullet holes in my bedroom windows." LOL! Which would probably happen. I would seriously freak out if I had a dream like that. Eek!

So with those two side effects, the doc said that this pill is the safest on the market. Really? Blue Fishnet-like legs minus the fishnets is safe? Ok. He offered a couple of other solutions too. Like, take a 30-minute nap right after lunch but be sure it's no longer than 30-minutes.

That would be great but...

a) How do I know when I'll fall asleep so I'll know when to set my alarm to wake me up?
b) If Sean is around how will he know when I'm finally asleep so he'll know when to wake me up?
c) How will I fall asleep? Really, how? I'm not a napper unless I'm really just blahhh.... and that's rare.

After talking for 30 or 40 minutes, I did some sort of speed walking test. I was wearing my 'Got Sexy' heels and wasn't making good time so I ditched them and went at it bare footed. Yuk! I hate walking around anywhere other than my home with bare feet but what can ya do.

4 seconds! YES! I'm thinking that's pretty good. :)

Then I got sent down to the lab. Dammit! Did you know I hate needles? Yeah, I see the damn things everyday but, well, technically I don't see them going in so it doesn't count.

I had to give a couple of tubes over to Satan's li'l helpers so they could see if my liver is being affected by the Copaxone and also make sure my white blood cell count is ok. Results to come. If you're on Copaxone, supposably you're supposed to get tested for those two sometime after starting the meds. Neuro number 2 never mentioned it but I'd rather be safe than sorry. Something to mention if you haven't done this and you just started a med. I think it goes for all the Fab-Four crab drugs.

C- Copaxone
R - Rebif
A - Avonex
B - Betaseron

So that's about it. Once I get the prescription for the fatigue stuff (I didn't remind him of it before we left because I wasn't too interested so he forgot to write it out. But his nurse called and said they would mail the prescription just in case.) I'll let you know the name when it comes in, just in case you hate the flu and love blue fishnets.

Oh! I just remembered a couple of things.

1. He said that caffeine may help with my fatigue issues and that our bodies get fatigued when our body temperature rises. He said that our body temperature is at it's lowest at 4am, and at it's highest at 4pm. Makes sense to me, I'm usually on my third or forth burn-out come 4pm.

2. He also said that people with Multiple Sclerosis suffer from an over-active immune system. Contrary to what I wrote in a previous post. I was so bummed when I was told that our immune systems are weakened due to MS but it turns out, according to my doc, they're not. And with Copaxone, it's fighting off about 1/3 of additional crap.

So there ya go!

Fuming

I received this invitation in the mail over the weekend. It's from Shared Solutions, the people behind Copaxone.

When I opened it, I saw the name of my former neurologist and I about screamed. I am extrememly frustrated that this incompetent, money stealing woman who claims to care about her patients is the "Featured Speaker" at this meeting. WHAT?!?!

I posted a few of the encounters I had with her last year while trying to get a diagnosis. You can read here and here and there's probably more.

I don't know what to think of it. To me, it seems like a joke. When I first saw it, I thought, "Great! Finally something to go to that's talking specifically about my situation and possibly updating us on upcoming treatments."

I'm unsure about what to do. Just ignore it, and let other people believe she's this excellent doctor in the field of neurology. Because she's not. Do I call Shared Solutions and see why they thought she was the best doctor in the area to deliver this speech?

I see myself sitting at this meeting (which seems to be very informal since it's taking place in a Bistro) and just getting so angry as I listen to her. I have a vision of me standing up, throwing my arm into the air with my finger pointing straight at her and saying, FRAUD!

LMAO!

Oh goodness. What to do? What to do? I would say that I would bring the hubby along for support but I think he may be more unhappy with her than I am.

So I'm not sure. I may just go for the last two words printed on the invitation, Dinner Served, and see what the slacker has to say. And then maybe I'll tell her that the seizures she said I had, weren't really seizures at all. And the brain MRI that was no worry of her's and was probably fine, had three lesions on it. And had she actually given me longer than 12.2 seconds to explain my symptoms and test my neurological response, she may've discovered quite a few more things pointing to Multiple Sclerosis.

(INSERT VERY BIG CUSS WORD HERE)

Video of Me Injecting My Arm

This video was made to help a fellow MS'er who was having trouble injecting her arms by herself. Hope it can help others too.

Fragile

D: Mommy, are you fragile?

Me: Yes baby, I am.

On Friday (or maybe it was Thursday, I can't remember) I saw a trainer for the first time. After a brief run-through about what I'm looking to accomplish, a BMI and body fat test, we got to work.

Thirty minutes later...

KILL ME NOW!

I felt like I was going to die. I sent a text to the Hubs to tell him I was finished and to relay the message that I felt like I was going to die. I even thought I may have for a second or two. Today, four (maybe five) day's later, I am still so sore.

And you know what, we didn't even use weights. I was the weight! All 166lbs. of me. Crap!!! I don't like the scale at that gym. That same morning my scale told me I weighed 161. Ah well, I don't really care about the number anymore anyways.

Tonight, Yoga! Tomorrow, more soreness and a dentist appointment. Thursday, Ophthamologist appointment. Friday, Nothing!

Me and Zumba

I completed my first Zumba class an hour and fifteen minutes ago. I showered and got dressed and decided to write and share my experience so that it was fresh on my mind.

My ass hurts! And so does my leg. Yes, I said leg, as in singular. Care to guess which one? Yup! The right one. (Off subject: I just saw a tiny blue light flash out of my peripheral. The right eye. Spooky!)

Let's see....what can I say about Zumba. I can tell you this, it is definitely less sadistic than Yoga.

Zumba is a fast-paced workout combining aerobics and latin dance moves. I have to say, there was a little too much jiggle coming from my side of the room. Gotta fix that.

There were breaks in between each song which was nice. It allowed me to take a drink of water and bring my body temperature down a bit. Before the start of each song there was a quick instruction on the upcoming moves. Some descriptions you may like...

- Move your booty like you're making a smiley face.

- Pretend you have a spoon on your butt and you're mixin'! You're mixin'!

- And Pump! And Pump! Unh! Unh! Yeah!

So maybe it's aerobics/latin dance/Show the FREAK in you! LOL! But I have to say, it was A LOT of fun! My cheeks were so rosey I would've put Santa Claus to shame.

Luckily, I made it through with no problems. And more importantly, I gave 100% the whole time. I'm pretty proud.

Tomorrow, the Hubs promises that he'll be home in time for me to go to Yoga. And for some reason, I'm looking forward to it. Maybe it's the hot rocks.

In an effort to find Acceptance, I will take it as a Compliment

Hi God!

I know we don't talk much but I want you to know, I do believe. And I'm sorry about not going to church as frequently as I should. It's because of.......um......uh.....nevermind. I'll try harder. K?

So anyway, last year, you tested my strength. And I will admit that for a moment, I didn't like you very much. It was really shitty timing. But I guess with something like this, no time is a good time.

So....

Here I am. accepting this gift from you as a compliment to the person I am and the strength I have. I must admit, you were right. I am one tough cookie! Stronger than I ever believed I could be.

Thank you.

Not for the actual 'gift', but for what the gift gave me...

- Stength

- Confidence

- Happiness (believe it or not)

- A Greater Appreciation for Life

- Real Friends

And so much more.

All I ask is that you take a little piece of everything you've given to me (minus the MS), and give it to the ones I love. And share my strength with the wonderful community of MS'ers I've met thus far, and also to those I will meet in the future.

Rehearsing My Lines

Dear New Neuro,

As you can see from my charts, I was diagnosed with RRMS on October 29, 2009 after numerous tests and discussions with your former co-neuro. I started Copaxone on November 7, 2009 and to this date, I have not missed any injections. Amazingly.

My New Symptoms Include -

Worsening of Blurred Vision: The blurred vision that at one point seemed to happen 20 or 30 times a day, has increased to more than 100. I don't count but it's a significant increase and my number is not an exageration.

The length of time my vision is blurred has also increased. From maybe a second or two, to five+ seconds. The blurred vision is unpredictable but does seem to worsen in the evenings when fatigue sets in. It is not painful but extremely annoying.

(I hope that before my appointment in February I can get in to see an Ophthamologist. I think of all the symptoms I could possibly have, interruptions to my eye sight is the one that saddens me the most. I love seeing my beautiful family.)

Frozen Finger: This may just be a nerve thing but out of no where my right index finger will be freezing and the rest of the fingers on my hand feel like they're at a normal temperature. It takes about 20-30 minutes for the finger to 'heat up' again but during this time, it hurts. Maybe like frostbite? I've never had frostbite before so I can't really compare, just guessing.

Dazed Vision: This is a new one for me. You know when you're staring off into space and you can see everything perfectly fine yet, everything is sort of in a fog? It's kind of like that. It happens sporadically and quickly if I don't keep my eyes moving.

I feel a bit 'spacey' during it but I'm still completely aware of all around me. I can usually blink out of it pretty quickly but again, if I don't keep my eyes moving, I'll fall right back into it. Is that fatigue? I have no idea.

High-Pitched Squeal: That's the gist of it. It's only happened maybe 2 or 3 times over the last year but it's something I forgot to bring up in the beginning.

That's almost all of it. Last night while I was sleeping I was awaken by what felt like a thousand tiny needles stabbing me on the bottom of my big toe. Or an electric shock. Nice! Lasted only 2 minutes or so and I can't remember which toe it was as I was half asleep.

(Just put Bean down for a nap and almost fell. My right knee gave out, worse than any time before. Hmmm...I seem to have a lot of issues with my right side. Another note for the Neuro.)

Whew!!! MS is tiring. The actual symptoms are almost as bad as tracking the damn symptoms. LOL! Ah well, it is what it is.

You Mess With Me....

You'll have to deal with him!

This photo was taken during soccer season in 2009.

I think it's the perfect pic to point out how big my son really is. He's standing beside an average size 7 year old and at that time, D was 7.

It's also a great opportunity to address the reason why my son is so skinny. HE'S TALL!

I can't even tell you how many people ask me, "Do you feed your child?" I'm sure some people may just be saying this jokingly but after a while, it's irritating and I take it as an insult to my parenting.

Tell me, why would my husband and I send our child to top rated schools, clothe him in the 'coolest' gear, and do all we can to insure his safety and happiness and NOT feed him?

So there you go! He's tall, he's healthy, and yes, he eats! About six times a day if you must know. This isn't directed to anyone in paticular, just something I needed/wanted to say so maybe now the comments will stop. :)

On to Random Mumbo-Jumbo

• I missed yoga yesterday because the Hubs was working but, I recorded a 30-minute yoga episode to do on such days.
• Back on track with all the injection locations. Still have extremely annoying itching associated with each injection but I am doing my best not to scratch. A little rub here and there is ok.
• Experiencing new symptoms that I'll discuss in detail in a later post.
• Bean said, "Look Mommy, Coconuts!!!" She was refering to pine cones in a Pine Tree. :)

Is It Getting Worse?

Having to pay attention to every single ailment can become extremely nerve racking. Maybe I don't need to pay attention so much. But, maybe I should.

I don't really know.

I find myself providing great support to others but I am still here trying to find my own way through it all. Still learning and trying to understand what I'm really supposed to do. How am I really supposed to feel? And how much attention given to the MS and the symptoms that accompany it, is too much?

All great questions that I think I'll have to learn the answers to on my own. I'll have to find my own way. A new way, a new normal.

For the last few days I've been noticing that my blurred vision has become more frequent and more disturbing. Lasting longer, being blurrier, and at times, pissing me off. I've also noticed that when fatigue sets in, it gets much worse. But then I calmly tell myself, "It will pass. Don't stress. It will pass."

And it does. But not as quickly as it use to.

So what do I do? I'm not use to this 'paying attention' thing. And when I tried to pay attention to every single ailment prior to my diagnosis, I drove myself insane. I had a notebook I walked around with and in some sense, that notebook was like my lifeline. Sort of like a terminally ill person who must walk around with their IV cart.

I didn't want to be tied down. I did it for a month or so to satisfy my neuro and after he was happy, I was done. I don't want to be that way now but I do see the importance of keeping track. I think. I mean, I need to know what's MS and what's not, right? I need to inform my neuro of new symptoms, exasperated ones, and whatever else. And he'll determine what's important information and what isn't. Right? I hope so.

So hear I am, with what I think is worsening symptoms. What does that mean? Am I in a relapse? I have no IDEA! I'm clear of one time (maybe two) that I was in a relapse. The time my vertigo lasted more than 24 hours and sent me to my GP who said, "You may have MS". And the second was a couple of months after that when for about 4 days straight I couldn't keep anything down and was also experiencing vertigo.

Some think I'm a little WACKO for paying such attention to my body and symptoms. I kind of just think I'm thorough. Either way, I think some symptoms are getting worse. So I'm just going to have to focus a little bit more on ignoring them, after I write them down for my neuro to look over.

Copaxone Injections - Video

Again, lovely start. LOL!

Yoga and Me and Multiple Sclerosis

Where do I begin?

Yesterday I went to my first Beginners Yoga class. It was....interesting, to say the least. I wanted to try it because I often hear people say how enjoyable and relaxing yoga can be.

Yeah right! It may truly be that way but for me, the first class was extremely difficult. Lets picture it, shall we...

• Me. Ready to stretch and relax and enjoy the next hour.
• Old Man. Telling me how much I'll love Yoga.
• Girl My Age. Saying, "the end is the best part". I should've taken that as a hint.
• Older Lady. No words.
• Instructor. "It's a lot of stretching but completely different from Pilates".

I've done Pilates before and was under the impression that Yoga was easier. WRONG! The reality....

• Me. Shaking life a leaf 15 minutes in. It's a one hour class.
• Old Man. Holdin' his ground, no problems there.
• Girl My Age. Solid as a rock! (Insert sarcastic curse word here)
• Old Lady. I got her on flexibility but she's holding strong too.
• Instructor. Solid. Of course.

Here's the thing, my right leg is weaker than my left. My neuro pointed this out a couple of months back and I just thought, "Mmm whatever!". I didn't believe him but it was proven in class yesterday.

Another problem, my coordination isn't what it use to be and when my eyes are closed, it's even worse. So in the beginning of the class when the instructor said, "Close your eyes as much as possible" I thought, "Sure!". But when I did it, it was scary. I tried to fight through it but in the end, not wanting to embarrass myself (by falling over and taking out Girl My Age at the same time) won.

So I continued on and finished the class in a lot of pain (I think I pulled something. Or everything.) but feeling good about what I accomplished. And the end really was the best part.

We were lying on our backs practicing our breathing techniques and completely relaxing our bodies. All of a sudden, someone grabs my ankles. The instructor was going around and giving a little tug to help loosen everything and get everyone to completely relax. She then came back around and did the same thing to my neck.

Minutes later, I felt a warm drop on my forehead. At first I thought it was wax but when the same thing was put in both of my palms, I realized they were warm rocks. Very nice.

We spent the next few minutes relaxing and then we were done. As I was leaving the class I said, "Thanks!" to the instructor and she said, "You're welcome. How'd you like it." I was honest and told her it was a lot more difficult than I expected it to be and that I couldn't stop shaking. She said, "Well, you did really well which is why I sped up the pace a bit. I usually don't do that with people who are doing Yoga for the first time but you did really good". Very nice compliment.

There's an Advanced Yoga class at my gym but I'm pretty sure I won't be walking into that one anytime soon. Even though it was very difficult and every inch of my body aches right now, I'm going back next week.

Oh God! Did I just say that?

Yes, I did. And yes, I am. It's good for me, good for my body, and it makes me feel good that I can 'hang' with the rest of them. And maybe I'll get better and leaner and stronger along the way. We'll see.

My least favorite move, Awkward Chair.