It's Kind Of Like "Hide N' Seek" Except for I Don't Stop Hiding And I'm Definately Not seeking..

My husband seems to think that I've become a recluse. I have no idea why he would think such a thing.

What just because I don't ever leave the house?

Or answer the phone?

Or invite friends over?

Ok, it would seem that I'm not making a great argument for myself here.

It's not because I'm a recluse, though. I have valid reasons for each of those examples.

*I don't leave the house because it's winter here in West By God Virginia (if you're a native, that's how you have to say it) and it's colder than a witches hoohaa outside. I don't do cold. That's nothing new.

I hate all of the bundling up then getting in the car and getting hot cause the heater is on high so I have to un-bundle, then when I get to my destination I have to bundle up again.

I hate the wind, the snow, the bitterness of winter. Always have, always will.

Nothing new there.

*And yes, I may have stopped answering the phone but that's because I feel that I just don't have anything to say. I hate making small talk about nothing and I hate even more that every conversation leads to me talking about my MS and then the person on the other end of the line starts feeling all sorry for me.

Plus, there are times when the phone will ring and I look at the caller ID and think "Ugh, I just cannot deal with a conversation with so and so right now."

*I haven't invited anyone over lately because that means that I would have to:

1. clean up the house

2. shower and change out of my sweatpants and long sleeved t-shirt that has become my uniform.

3. Put on a Bra. Ugh...I would rather fight a bear than put that contraption on.

4. Have interesting things to talk about.

Ok, yes I get it. Those are horrible reasons and I need to snap out of it. But for some reason I just feel, well, stuck.

Kind of like that but with a few changes. First of all, I would not be outside, nevermind climbling a tree, and of course, it's missing my sweat pants. Oh and I'm not a dog. Yeesh, I haven't let myself go that bad! But other than that, I feel exactly like that.

The thing is, though, I don't feel isolated or alone. I'm not wandering around the house, wringing my hands, crying, and depressed because I'm alone.

In fact, it's quite the opposite.

The weemonkey and I hang out, watch cartoons, and play. And then we take a nice nap. Then we wake up, have lunch, do some coloring. It's all very important stuff we do. I've almost taught him how to write his name, we're in the process of potty training (the weemonkey, not myself) and we stay inside, warm and unbothered.

I know that I should be calling my friends (all two or three of them) and having them over for playdates and coffee but I'm just not up to it. And it has nothing to do with my friends or their kids. I just prefer my days to be the way they are.

No schedule, no structure, just me and the weeman. And then when the older monkeys get home, we do homework and wait for The Hubs to get home.

I'll be the first to admit that it's not exactly the "jet setter" life that some people feel they need to have. I know those people, I once was one. I was Super Mom! Always on the go, always volunteering at the school, taking the kids to dance classes, having playdates, go, go, go.

Then I realized, that in all that time playing Super Mom, I wasn't taking care of myself and I wasn't really spending time with my family. I guess, in that way, you could say that the MS has been a blessing or a wake up call.

I have decided to look at it this way.

Maybe I'm not becoming a recluse so much as I'm in a form of hibernation, waiting for the Winter and all of it's cold and bitterness to go away so that I can come back out and "bloom" in the Spring.

Now, doesn't that sound so much better than being a recluse?

P.S. I still haven't gotten my first injection of Tysabri. They've rescheduled me for the third time now. Supposedly, this Thursday is my day. We'll see. Maybe the 3rd time will be a charm!

Is There A Time Frame On How Long I Have To Wait To Strangle Them?? Cause I'm Ready NOW!

You all warned me, but did I listen?

Oh no, I chose to give them a chance. I had hopes.

I was wrong. I WAS HORRIBLY WRONG!

Who am I speaking of, you ask?

I'm talking about the office staff at my new local neurologists office.

You all told me to watch out for them but I didn't listen and now I want to strangle every one of them!

As I may (or may not have, I can't remember) told you, I am in the process of switching MS Therapies from Rebif to Tysabri. I stopped taking the Rebif when the nurse from the doctors office told me to and was waiting for the call that would tell me when my first injection would be.

When the call didn't come, I started to get nervous. The month off from Rebif was hell for me. I've had two major flare ups, my fatigue is at an all time high, I'm forgetting stuff all over the place, and my body hurts like I've played a game of football by myself against the Steelers (I love Big Ben!).

Finally, I called their office and was told that they were having trouble getting the insurance to approve the medication. "That's funny" I thought, our insurance usually doesn't require approvals.

When I explained it to The Doc, aka the hubs, he thought it sounded funny too so he called the insurance people and was told that, not only did we NOT need an approval, but that there was no request for the Tysabri on record. THEY HADN'T EVEN CALLED ABOUT IT YET!

So, the hubs called my neuros office and worked his magic (and by that I mean he scared the crap out of everyone there) and an hour later I got a call saying that the insurance had "approved" my Tysabri and that my first injection would be Jan. 10th, which was last Friday.

Thursday, I got a call from a mail order pharmacy called Caremark, not the one we use, who informed me that my medication was ready to be shipped out but they had to tell me of my co-pay first. Wanna know how much they wanted???

$698.00! A MONTH!!!!!

When I called the nurse again to ask her why she didn't use our mail-order pharmacy, who would only charge us a co-pay of $50 for three months, she told me that I told her that Caremark was our pharmacy. Oh, so now it's my fault?? I guess when all else fails, you blame the patient.

Then I thought back to when I had to fill out this book of forms that they mailed me before my first visit and I distinctly remembered (well, not remembered so much as found the copy that I made of it) that I had filled out a paper telling them the information on my mail order pharmacy. I told the nurse that I had not given her the wrong information and she said, very snottily (is that a word? snottily? snidely?) that she was holding the original in her hand at that very moment and said that I had written down this other pharmacy. "Oh, really?" I asked her, trying to be as snotty to her as she was to me, "because I made copies of all of those forms and I'm holding the copy and mine has the correct information on it.

After all was said and done, it turns out that the office staff was the ones who had made the mistake.

I KNOW! I was just as shocked as you are now!

It has now been six weeks since I have been on an MS Therapy and it has been six weeks of pure hell with a couple of good days mixed in here and there. When the nurse called me the last time, I tried to explain this to her. I told her that I understood that I wasn't their only patient and I know I'm not the Jiminy Cricket on her shoulder at night, not letting her sleep. Then I tried to explain to her what the past six weeks have been like for me. I've had three flare ups, two that effected my speech and balance, and all three gave me fatigue to the point that my husband had to stay home from work a couple of days because I could not keep myself awake for more than 15 minutes at a time.

Would you like to know what her response was? Ok good, cause you're getting it!

She said "Well, through it all, it sounds like you've been getting by just fine."

Oh yeah, I'm getting by just fine and dandy thanks.

Before I go, I have to tell you something that I did. It's one of those "Everyone is already laughing at you so you might as well laugh too" kind of things.

I have an email account that I use just for an online MS support group that I'm a member of. But every time I went to sign in, I would always end up mispelling my password once or twice and it was starting to drive me crazy.

So, two days ago, I changed my password and I remember thinking "This is something I will never be able to forget".

Well, I forgot it.

And I have no clue as to what it might be or what it pertained to. Yesterday, I tried so many passwords and zipcodes that my account was locked for 24 hours and I think I'm getting pretty close to that again today!

Do any of you have any ideas what I could have changed it to? You all probably know better than I do right now!

When A Month Lasts An Eternity

I had all of these great ideas to write about for this post but, like a dummy, I forgot to write them down and now I'm sitting here, staring at my computer screen, trying to figure out what those great ideas were. This whole forgetfulness, that I'm told is called MS Brain, is such a wonderful thing to have.

I start my Tysabri injections on Friday. I have a lot of hope that this will help me to become a somewhat normal person again. Well, no that's no right. I was never a normal person.

Hows This? I'm hoping that it helps me to be some of the person I was before the whole MS thing came along. That's better.

I will say that being off of any MS Therapies has been a hellish ride for me.



**On a side note, are any of you on Tysabri? I would love to hear some feedback on what it's like, how you're doing, what to expect immediately after the injection, etc. etc.**



For the past month and one week, I have been an all over the spectrum mess.

In the beginning, I felt horrible. I was fatigued to the point that I couldn't keep my eyes open, my entire body was in immense pain, and I could have ripped the head off of Mr. Rogers just for asking me to be his neighbor.

I've had three flare ups where my speech was affected, as well as my walking, and sleep. I find it kind of ironic and somewhat cruel that this disease can make you so fatigued and you have to fight through it during the day and simple tasks, like emptying the dishwasher take you an hour and a half. Then it's finally time to go to bed and suddenly, you're wide awake and cannot lay still so you get up and go watch TV until four in the morning. Good times.



I've had some really good days too. Days where I could go, go, go without needing to sit down for a second. I did so many errands, organizing, cleaning, and laundry that you would have thought I was on crack.

And you wanna hear something funny? After not being able to do a lot of things for yourself for a long time, I found myself excited, almost giddy, to do laundry! Seriously, I can't explain why I was excited about it because normally, I hate laundry. I would go into the laundry room like I was walking into a pit where I would have to wrestle a lion.

But on these good days, I was a laundry fool. I washed, I treated for stains, I even separated the whites and used bleach! And then I would wait and pace, and keep going into the laundry room to see if the washer was done, always disappointed if it were still going. And then I did the same with the dryer. I hung clothes on hangers, folded the others in pristine folds, organized my daughter's closets so that it would be easier for them to find their clothes.

I was laundry crazy!!

But of course, after two or three days, the good days came to an end and I was back in bed, watching Snapped marathons on the Oxygen channel and making the hubs nervous. At one point he even said to me "If you're planning on killing me, just know that you're a terrible liar and you will get caught." to which I replied "Honey, I'm not watching this show for ideas on how to kill you! All of these women got caught for crying out loud!" For some reason, that did not put his mind at ease....

But I have to say that my proudest accomplishment thus far of this month happened on my other blog. You can check it out here.

Here's the scene:

It was one of those nights where I couldn't sleep and I was in a lot of pain. So, I got up, took one of my pain pills and headed into the living room to watch some more episodes of Snapped or something. Of course, the show you want to watch is never on when you need it so I picked up my laptop and was surfing the web. By this time, the pill was kicking in and I was feeling a little loopy at best.

One article lead to another and I had come to the conclusion that some, notice that I say SOME of the more extreme animal rights activists groups are a little...well...insane.

Now, don't get me wrong, I'm all for the protection of animals and all of that but there are some cases when I think they've gone a little too far. I'm not going to get in to it on here, you'll have to go read the post but lets just say breast milk in Ben and Jerry's Ice cream is not a good idea.

Long story short, I wrote a post, not naming any names, about how funny I found some of these extreme groups ideas. (Who goes to KFC for a vegan meal?? Anyone?)

Of course, the next morning I woke up thinking that maybe that post might have been a bit offensive. I had no idea how right I was! All I can say is that I hope the Vegan Commenter isn't homicidal.

So, yeah, I made someone mad and it might not have helped that my faithful blogger friends left comments for her like:

*She needs a good cheeseburger, then she would chill out.

*Did somebody just mention veal? Oh, now my mouth is watering!

*It sounds like she's going through steak withdrawal.



But secretly, I have to admit, I'm kind of enjoying it. But don't tell anyone!

Oh Geesh, This Can Be Hard Work!!!

I happened to look at my blogger dashboard and was appalled that I haven't posted since December 23rd! That's last year, for crying out loud!
I keep finding myself in a daze, as if I'm unable to convince my brain that it actually is 2009.
I mean, yes I'm forgetful and I do tend to misplace things, but it would appear that I've gone and misplaced a whole entire year! Well, not exactly the ENTIRE year, more like from May to December. You do the math..then get back to me on how long exactly that is, okay?

I'm not one to make resolutions for the new year. I find that if I make a resolution, this impossible goal that suddenly seems possible after several glasses of champagne or Old Milwakees Best (hey, I don't judge), then you're already setting the year ahead up for failure, depression, and anger.
I think that I unwillingly go through that enough already, don't you?

So, since I don't have to do all of that thinking over what resolutions I'm going to not stick with, I've had a lot of thinking time. And, even more bizarre, I found a lot of things funny.

This is what I've realised: I have said more bizarre, childlike, even spacey things to people over the last eight months than I have in my entire life.
Here are just a few that I remember:

1. To the Dodson's Exterminator "What time do you think you'll be here because my naptime is between 11-2 and I can't be disturbed during my naptime."

2. The conversation with the DirecTV guy who came to move our lines after our renovations:
Him: Mam, would it be ok if I use your phone?
Me: Sure. Would you like to push or look?
Him: Uhmmm, excuse me?
Me: [HUGE sigh as if he's the idiot] Do you want to push or look?
Him: I just want to use your phone?
Me: Yes, I understand that you want to use the phone. What you don't understand is the fact that I tend to put things in places that I don't remember and that don't make sense. So, would you like to push the "page" button for the phone or look for the phone?
Him: Uhm, push?
Me: Ok then! Get to pushin!

And do you know where I found the phone? In the dryer. The dryer that was running, drying towels. Yeah, I know.

3. I told my "center" child to pick up her suitcase. She looked around the room and said "Where is it?" "It's right at your feet, child! Look down and you'll see your suitcase!"
She then looked down, then the lightbulb visibly went on in her head, she had realized that her mother was a boob. She then looked at me and said "This here {pointing at the "suitcase" to which I shook my head "yes"] Well, I'll pick it up and put it away but I refuse to call my SLEEPING BAG my SUITCASE!"
Yeah, I was trying to tell her to pick up her sleeping bag but for some reason, suitcase was what was coming out.

4. I have said, on numerous occasions, to my husband "You really do love me, dontcha?"
That statement usually followed conversations like this:
12:15 p.m.
Me:Hey, honey? Did you get the mail today?
Him: No, it hasn't come yet.
Me: Oh, okay.
12:30 p.m.
Me: Hey, honey? Did you get the mail today?
Him: [letting out a slow, deep, meditation like breath then says through gritted teeth] No, it hasn't come yet.
Me: Oh, okay.
12:45
Me: Hey, honey?
Him: No IT HASN'T COME YET!
Me: How did you know what I was going to ask you?
Him: Because this is the third time you've asked in the last half hour.
Me: And you didn't strangle me?
Him: No, but the urge might have been there.
Me: Awww, babe, you really do love me, dontcha?
Him: Yes and who would raise the kids if I strangle you and then get myself put in jail?
Me: I'm going to ignore that last part and just go with "You really do love me".

I guess that's one of the good things about having this disease. When I feel like I'm going crazy, it's always comforting to know that I'm driving the people around me just as crazy so I'm not alone.

Ahhhh..The Holidays Are Coming..Whether I Like It Or Not

Well, Christmas is officially on it's way. Only 2 days away.

I'm in such a strange place. I'm not in the "Christmas Spirit" at all. And this is very unlike me.

I am usually one of those people who get so excited about the holidays. I have about ten totes filled to the brim with Christmas decorations, dishes, a Dickens Style village, and an enormous Santa figurine collection.

Every year before, you would walk in my house into a house that looks like Christmas threw up all over it.

This year, I had to be forced to get a tree. And the decor is at a bare minimum.

What is wrong with me?

This is kind of what I'm dealing with:

Before:

Okay, this is not really my house but you get the idea.

And Now:

Sad, isn't it?

The funny thing is, though, is that nobody has noticed. Well, I have but none of the other people in the house haven't noticed a thing.

None of the children have said "Hey mom? Where's the Dickens villiage that you always tell us not to touch?" or "Where are all of those weird Santas that you stick everywhere around the house?"

It's amazing. They're as happy as can be and they don't even care that it's the bare minimum.

Which leaves me to wonder, who the hell was I doing all of that for? The hubs could have cared less, the kids seem almost relieved that there's nothing that they will be yelled at if they touch, and I'm not exhausted from putting everything out and then dreading putting it all away when the holiday was over.

It's all kind of strange and wonderful at the same time.

Another thing that has changed about this Christmas is that we are staying home for the first time ever. Before, we always traveled to see family. We would either fly to Arizona to see my inlaws. And while it was always nice to see both of them (I mean that, I have truly been blessed with wonderful in-laws) have you ever tried to fight through an airport with three little kids and a thousand carry-ons, rushing to your gate so that you don't miss your flight only to find out that it's been delayed for three hours?

So, you open the carry on that has all of the activities that you were planning on using for the plane and try to entertain them for three hours. Then you finally get on the plane for the five hour flight and you've spent all of your activities in the airport and the kids are bored and they don't want to sit still and the guy in front of you reclines his seat as you're bent over, digging through bags trying to find snacks or ipods or DVD players. You finally find that thing that your one child wants and she's happy but then the other asks for something so you're digging again and that is the moment that your two year old son decides to find out how the table works and it slams down on the back of your head. And you're trying not to lose it because you haven't even LEFT THE GROUND YET but it's getting really hard. Then there's the endless trips to the bathroom and then the baby decides to poop and have you ever tried to change the poopy diaper of a toddler in an airplane bathroom????

The times we didn't fly to Arizona, we normally drove to Connecticutt to see the rest of the hubs family and while driving is a little better than the plane, there's the endless potty stops and complaints about being cold/hot/bothered/unhappy with the world in general.

Then you get to your destination, where a family member has offered to let you stay in their guestroom and sleeping arrangements are insane and you really don't want the kids touching anything in the house. And you're spending the whole time trying to convince the hubs' side of the family that just because you are from West By God Virginia, you are not a hillbilly and yet your children are walking around acting like the Clampets and you just want to scream!

Now, don't get me wrong, I love seeing the family but I always end up stressed out because I want my children to look perfect and act perfect and WHO ARE WE KIDDING? They are children!

So, this year, we have decided that we are making Christmas all about us and our little family of five. We are going to have the traditional Catholic/Italian Christmas Eve dinner of seafood and then we're going to watch...oh I'm so giddy about this!!!!....The first one of the marathon of A Christmas Story on TNT!!! I have watched that marathon every year of my existence and I love it. Then we'll wake up Christmas morning and open presents in, get this, our pajamas!!!! Then the hubs will make his famous "Big Breakfast" and I am going to make a Christmas dinner that involves making my first ever turkey. Pray for us that I don't kill us all from salmonela!

It may not sound as exciting as going to Arizona or Conecticutt but it's going to be ours and I can't tell you how happy I am about this.

Now, if I could just get that Christmas Spirit that everyone is talking about.....

Um, Say What?

This is my 20th post on this blog. It's funny to me since I have 665 on my other one.
So, do you ever sit down and start thinking about life and your MS comes to mind and even though you already knew it, it hits you again:


Wow, this IS for the rest of my life. Holy S*%t!


Maybe it's still the fact that all of this is still new to me and, honestly, it's made my life really crappy for the last eight months, but I honestly do have those times when that thought comes to my head.
For instance, my oldest monkey came up to me the other night and said "Remember when we made those plans to go to Disney World in a year? That's still happening right?"
Without thinking, I said "Sure honey, why wouldn't we be going? We already have reservations and things. Why would you think we wouldn't go?"
"Um, well, because of your MS."
And I sat there for a second and it hit me, oh yeah, I'll still have "my MS" in a year, right. Cause it's here forever. Right.


I guess I'm still getting used to all of this.


But there could be perks to going to Disney now.


I'll have my scooter and by then I plan on switching out those wimpy wheels and horn for something more, how shall we put this? Substandstial?


Yeah, like that but only four more of those.

And the horn we've already discussed.

Oh, there will be danger, my friend. In fact, Danger is my middle name. (Actually it's not but I was on a roll of coolness.)

On a serious note, I've made myself a goal. I'm calling it the:

"No Weather Permitting Will Be Said Goal"

I know that doesn't make sense but I can help you. During the winter months, whenever my mother is making any plans to come and visit us, at the end of every conversation she will say "Of course, you know, this is all Weather Permitting, right?"

I don't want to tell my kids "Yeah, we'll go to Disney, As Long As Mommy Feels Good. It's the same difference, to me atleast. Because, just like snow in the winter, we all know that we can go from feeling great to poo in 2.4 seconds.

So, I am keeping our plans. If I need to add a nanny, I can handle that. In fact, we might do that anyway. But my children will see enormous rodents next spring!

How do you all manage family vacations?

A Huge Thank You And Some Random Thoughts

I hope that you all have noticed that Sarcasm, Kids, and MS has been pimped out!

You have noticed right?

Ok, I'm gonna stop for a minute and you take the time to look around......

.........

It's awesome, I know!

I owe it all to AngieSS who writes at the blog Cup of Snarky. Thanks Angie!!!

It's funny how it all came about, Angie pimping out my blog.

See, I went over to visit one of my favorite people, Bee at BeesMusings and I realized that everything was different and amazing. Bee had been pimped!

I then read her post where she bragged and rubbed in everyone's face about how AngieSS had pimped her blog all out and look at what a great job she did.

So, in the comments, I wrote something completely subtle and humble cause that's just who I am (stop laughing!). I think my comment went something like "I sure wish Angie would come and pimp my blog. I'm so bored with it. It's actually considering jumping off a bridge cause it's soooo boring." (I'm not talking about Sarcasm, I'm talking about my other blog Rambling Thoughts)

A few days go by and I had actually forgotten about that comment (ha, along with about a million other things) when I get this email. Angie wanted to pimp me out! So she did! And I sent her an email, thanking her from the bottom of my heart, and I may have mentioned that I had another blog she could pimp..hint hint...and she did!

I have to say, I am so thankful to her that she did because I tend to be a bit computer illiterate. Seriously! For example, I just now learned how to use the Paint program on my computer. And isn't Paint like a gagillion years old?

So, Thank you so much Angie! I love the new look and Lord knows, I couldn't have done it without you!

In other news, I have been dealing with the mother of exacerbations!

The pain that I'm always in is doubled and yesterday I woke up talking like Forrest Gump (well, not exactly like Forrest but that's kind of how I feel. I keep feeling like I should say "I'm not a smart man Ginny, But I know what love is!"), and my balance is way off. I mean WAY OFF.

Let me try to explain it to you: Most people know when they're standing up or even when they're falling over right? Well, I feel completely normal until I feel myself hit the floor.

What is up with that?

And as most of you know, having your eyes closed doesn't help much but there are some times when you just can't help it.

For Example: My neurologist asked me if I closed my eyes when washing my hair in the shower. I said "Of course I do, have you ever gotten shampoo in your eyes? It hurts!"

By the way, I think this is why my neuro at Georgetown treats me, I tend to be a bit entertaining.

Anyways, he says "Well, you've got to stop it. Wash your hair with your eyes open so that you don't fall."

And I've tried to do it but the thing is, it's been built into my daily habits. When I was "Little Tracy" and my mom was teaching me how to wash my hair, she told me to "keep my eyes shut". And then there would be times when I would forget to shut my eyes and the soap would get in and I would start screaming things like "Owe! Soap is in my eyeballs! Owwwwwww!" and I remember my mom saying "Well, I said to keep your dadblamed eyes shut! Whatsamatter with you??"

So, yeah, now I am having trouble keeping my eyes OPEN when I know that they should be SHUT. And I really don't think that this is where I intended on going when I started writing about my flare up but, hey, the mind has a...um....mind of it's own right?

And I'm still not in the "Christmas Spirit" and I don't mean all of those crazy shoppers version of the Christmas Spririt where you have to trample and shoot people.

I'm just not feeling it this year.

Normally, we would get a tree the weekend after Thanksgiving. This year, still no tree.

I have totes of decorations that are always put out the same weekend as the tree. This year they are still toted.

I don't know why I'm feeling like this. Does this fall into the "First Year of MS" category or is this something all it's own?

Well, one thing I did do was get the kids Christmas portraits taken. And that is what I'll leave you with.