Friday, January 23, 2009

I Did It, It's Done, It's Over..For This Month Anyway

Well, I did it. It finally happened. It's done. For this month anyway.

That's right, yesterday I went to my local neuros office and had my first Tysabri infusion done. After six long weeks of waiting, some mistakes (theirs, not mine), and a snow day that cancelled school, I finally had it done yesterday!

Would you like to hear my funny little story from yesterday?

Oh, I'm sure you don't.....
I don't want to waste your time.....
It's probably not that funny anyways......

OK FINE! I'll tell you! You don't have to yell!

So, my appointment was scheduled for yesterday (Thursday) at 9:30 a.m.
I can't tell you how many times I called to confirm that this was still going on and every time I was assured that everything was fine.
My friend Angie (who I thank the stars for every night!) was set to watch the weemonkey while I went.
The night before my appointment, I was on the phone with her and she asked if I would be ok to drive. I said "I hope so. I really don't know what to expect."
So, not only did she watch the weeman, she also drove me (and bought me lunch which was awesome!). And for good measure, her hubs came along too!

I arrived at the doctors office 15 minutes early with a bag packed with reading, writing, and listening supplies as well as a blanket and wearing my comfy sweatsuit that doesn't look like a sweat suit.
I walk up to the window and tell the receptionist who I am and why I'm there.
She starts going through papers and then gets a confused look on her face and comes back to the window, slides it open and says "Umm, funny but I don't have you on the schedule...Are you certain that you have an appointment today?"

I'm pretty sure that this was the moment where my face turned bright red, smoke started coming out of my ears, and alarm bells started ringing.
If this girl told me that I didn't have an appointment today and sent me home, I was going to hurt someone.

But all was well when they called the Infusion Nurse who confirmed that she managed to squeeze me in and told her to send me back.
That receptionist girl was lucky. Very, very lucky.

So, it's done for this month but, I have to say, I am so glad that Angie did drive me because I was exhausted and still am. I really don't know what to expect so I'm just kind of riding it out in the hopes that it subsides.

In other news, I had my first interview yesterday on my other blog and since it started with a question about MS, I thought I would share the interview with you all too.
Hope you enjoy it!

Question #1:
You've got MS. How did you react to hearing that you contracted this and how do you and your family cope?

Me: Wait a minute..what? I've contracted what you say? Is that like a VD or something that kids these days made up, like cooties?
Oh, just kidding.
Yes, for those of you new or ignorant, I do have MS (Multiple Sclerosis). I'm not sure that you "contract" it so much as it just grows there, in the white matter of your brain. (I actually blame all of my old high school friends for all of the peer pressure that they put me through because I would NOT have smoked so ciggies..if it weren't for them!)
Well, first I tried to ignore it.
I had always heard that saying "Ignorance is Bliss" and thought maybe that would work out for me.
Unfortunately, that was not the case.
Then I got really angry, except for I didn't have anyone to be angry with. So, I attacked the unassuming people around me for doing things like breathing in my area. I'm not kidding here.
My poor husband saw that I was having trouble with my leg so one day he brought home a cane for me. While that was a nice jesture, at the time, it made me really mad and I think I smacked him with it. And have several times since. (That's one thing the cane is great for!)

At this moment in my life, I am not so much in the "acceptance phase" as I am the "I'm tired of feeling like crap so I've got to do something about it" phase.
With the help of my wonderful husband, I have come to the conclusion that this is not going to go away so I'm going to plan B: I'm gonna kick it's ass.

Question #2:
If you could pick one dream of yours to come true in your lifetime, what would it be and why?

Me: Since my father's passing, I've often had this dream where I'm at a party and I sit down on a couch and turn my head to realize that I've sat down beside my father. In some subconscious state, I knew that this wasn't possible, since he had died when I was 19 and pregnant with the first monkey, but in the dream it feels very real. So, we sit and have a conversation, my father was always big on theories and destinies in life, and this was the kind of conversation we had in my dream. I asked him if he knew that I had children and he said that he watched them everyday and he promised me that there was something else after this life. Then he says that he has to go back and gets up and I watch him walk down this really long hallway.
That is the dream I would love to have come true. One last conversation with my father, knowing that he sees his only grandchildren, would give me so much peace.

Question #3:
You've got many online blogger friends. If you could hold an annual blogger friend reunion, would you and who would you have host the event?

Me: I honestly never thought it could be possible to call people your "friends" when you've never met them, but I do consider them my friends.
I think it would be fun to have a "Blogger Reunion"!
When you read someone's blog regularly, you get an idea of what the person is like in real life. I think it would be interesting to find out how close I am in life.
To host it? That's a tough one...
Ok, how about this?
I want it to be somewhere warm and not always raining so we'd have it at Jean Knee's house BUT seeing as how the contents of her fridge (and freezer) can be creepy, I want Bee's mom to cook (I hear she's an amazing cook).

Question #4:
Name 3 Real Life heroes of yours and why they effect you so much.

Me: 1. Not to get all smooshy gooshy, but my husband would definately be #1. He is a truly good man, a wonderful father, and he put up with me before I had MS (and I was kooky back then!). And I know that I wouldn't be where I am if it weren't for him, especially healthwise. If not for him, I would still be sitting in a dark room with my fingers in my ears, going "LA LA LA I CAN'T HEAR YOU!!!"
2. My Grandma Emma. She was 1 of 13 children who were raised poor, with a father that could be a bit abusive, and she only went to 8th grade in school. But she went on to marry and spend the rest of his life with my Grandpa, birth and raise three children, and worked a country store with my Grandpa in rural WV.
And she could swat your butt with a flyswatter so fast that you wouldn't see it coming or going!
3.Bob Ross is definately up there too. Seriously, have you seen how happy his little trees and little squirrels are?

Question #5:
If you could come back after dying and see the impact you've made, what would you want that impact to be and why?

Me: Well, since my dreams of being a super hot, super talented, world known rock star who played guitar and wrote her own songs didn't work out (Thanks mom for not buying me that guitar and lessons when I was 10!)(no that I'm bitter about that anymore) I would come back to check on my kids to make sure they're still following everything I taught them.
Examples Would Be:
*Are they good people?
*Are they litter bugs? (cause if they are after all of my in car lectures of how wrong that is, I will haunt them!)
*Do they replace the toilet paper roll or paper towel roll when it's empty?
*Are they wearing clean undies?
*Do they talk to each other every day and have good relationships?
*Have they set up a shrine in my honor?
*Are they hard workers?
If I should happen to go to the great beyond before the hubs, I plan to check in on him too. I don't want any unsavory women in my house, looking at my things, or talking to my children.
In fact, maybe I will be stuffed and put in the corner of our bedroom and that way he will neer feel safe bringing any of these unsavories home. Something to think about.

The interview questions were sent to me by Jormengrund after I left a few tantrums in his comment section. Someone finally took the hint! Thanks Jorm!

Tuesday, January 20, 2009

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!

Wednesday, January 14, 2009

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.


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!

Wednesday, January 7, 2009

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!

Friday, January 2, 2009

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.
Me: Hey, honey?
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.