I Guess It's Been A While....

It seems a little funny to me that I started this blog as a form of therapy to help me deal with my journey down the winding road of MS, and yet, when it gets rough the last thing I feel like doing is writing about it.

I've made some decisions over the last few months that I feel were the best for me.
First of all, I decided to stop taking the antidepressant that I was put on the same day I was diagnosed.
I was taking Effexor XR 75 mgs, two a day, which adds up to 150 mgs.
Now, I'm not going to bash antidepressants because, honestly, I don't know how I would have made it through the first six months, hell even the first year, after my diagnosis without them. They made me numb and during those times, numbness was very welcome.
After I hit my year mark, even though I was feeling better physically at times, mentally I was in a very negative place. Pessimism has never really been my thing, you know?
But more than that, even though I wasn't "depressed", I also noticed that I wasn't anything else either. I was never happy or excited, I didn't look forward to things the way I used to. I was just here, a body on the floor, going through the motions but never truly experiencing any of it.
I couldn't make decisions for myself, even about simple things like what to make for dinner. I would stand in front of the freezer, door open, staring blankly at nothing and then I always ended up texting The Hubs to ask him what he wanted for dinner.
I decided that it was time for me to see how I was without the anti's.
I honestly felt like I was wandering into something unknown. I didn't know myself with MS without the numbness.
I wish I had taken a picture of The Hubs' and my MS specialist's faces when I told them at one of my appointments that I was going to quit taking the Effexor. My specialist said "Oh, it's not working? I'll write you a script for something better then."
Then I sprung it on them.."No they aren't working but, for now, my plan is to wean off of the Effexor and then see how I am without antidepressants."
{SILENCE}This picture is almost perfect because this is basically the expression on both of their faces.
They both tried to talk me out of it but, for the first time in over a year, I had made a decision and I was sticking with it. The ironic thing, atleast to me, is that they feel they should watch me like a ticking bomb now since I've stopped them. I didn't say it but I thought "You should have been watching before, when I was still on them." But I didn't think it was neccessary to draw unwanted attention to myself.
I started weaning myself off of them, hoping that if I did it slowly I wouldn't go through withdrawal from them. It didn't work and the withdrawal was awful!
For two and a half weeks I couldn't keep any food down, I was in the most intense pain that went throughout my entire body, and I didn't have the energy to do anything. I also lost 22 pounds in those two and a half weeks. That was rough.
But I stayed strong and kept myself focussed on the end goal: I wanted to have feelings again. I wanted to see if any of my old self still existed inside of my body.
And eight days in, I knew it was going to be worth it.
I was getting the girls ready for school one morning and the oldest monkey did something goofy and it made me laugh. Both of them stopped what they were doing and stared at me like I had grown horns. When I asked them what was wrong, the oldest monkey replied "You haven't laughed like that in a long time!" and the center monkey followed up with "That was a real laugh, not like when you're doing a fake laugh just to make us happy!"
I didn't know what to say but my mind went insane. I started thinking things like "I thought I was doing great at playing the role of a real person but they knew anyway. What have I been giving them all this time?"
And now, six weeks free of them, I feel better than I have in a long, long time.
That's not to say I haven't had my bad moments but, honestly, who doesn't have them? They're a part of life, whether we like it or not, right?
Honestly, I'll gladly welcome those bad moments if it means that they will be followed up by some really great ones too.
And, on the brighter side, I've found that some of the "Original Me" is still in here and she's been dying to get out.
Go figure....

A Flare Up, Some Good News (Or So I'm Told), Some Confusion, And Traces Of Complaints...This Post Covers A Lot Of Ground!

I had my first real flare-up since starting the Tysabri infusions five months ago. It happened three weeks ago and, while I am grateful for only one flare-up in a whole five months, I have to say that this one was quite impressive in it's intensity.

I've had some pretty impressive flares during my life with MS (in my book anyway)(I cannot believe I'm bragging about how impressive my flares have been..ugh!) but this one took the cake.

For the first time, MS decided to screw with my eyesight. No, that's not right. This is the second time, the first being my Optic Neuritis.

Anywho, I woke up one morning and blindly shuffled from the bedroom to my chaise lounger in the living room and spent the next two hours waiting for my eyesight to stop being so annoyingly blurry.

Then I lost my peripheral vision. I then spent the rest of the day wandering around and bumping into things that had obviously moved from their normal places and doing a lot of cursing.

Lots and lots of cursing.
The next morning, I awoke and immediately opened my eyes to see if it had cleared up.

Peripheral Vision? Check!

Lack of blurriness? Check!

Huge, black, blind spot in the center of my vision? Uhmmm, not on the invite list.

And yet it was there, this black spot right in the middle of my line of site.
Basically, I could see up above me (you know, like when you're looking at a person's face and you can still see the ceiling?) and below me (same thing but BE low), my peripheral had come back but if I were looking at someones face, basically all I saw was hair, chest/shirt, right shoulder, left shoulder, nothing else beyond three feet of me.

I've been able to handle a lot of stuff in the past year that I never imagined I would have to deal with but when it starts messing with my eyesight, I kind of start to freak out a bit.

Then more symptoms, familiar symptoms started to show up throughout the next two days. Fatigue, foot drop, dizziness, total loss of balance, really need I go on?

Four days after that first blurry morning, my husband suggested we call my MS specialist in Georgetown. He ordered an MRI and penciled me into his schedule for the next day.

*Sigh...Another three hour drive to Georgetown.**

On the bright side, there was some good news that came from that visit. My new MRI showed that I hadn't grew any new lesions (When I was on Rebif, my brain turned into Miracle Gro) and that all but 3 of my 18 lesions appeared dormant.

"Good for YOU!" he shouted in his thick, Arab accent.

He was priding me like a kind parent to "that kid" (You know who that kid is, right? The one who is always picked last on teams and yet still goes home and says to his/her parents "I was chosen for a team as their last player and I almost touched the ball as I lay on the ground in a ball, shrieking "Get it away from me!" as it went whizzing by my head!" To which his/her parents would say "Oh, Good for you, honey" as they mentally say a prayer that this kid is a genius since sports aren't going to pay his/her way through college.

Not that I had anything to do with my brain not acquiring new lesions. If I had control over that then I wouldn't have let the existing ones set up shop!

The visit to Georgetown also included a suggestion in changing medication.
I know that most people don't talk about taking antidepressants for fear that others will think they're crazy, however, I am not one of those people.

I know that everyone has an opinion on the subject (Wanna Fight, Tom Cruise? I can assure you that I will not be "glib") and I would never dare to ask any of you with MS what you're taking or if you are taking an antidepressant. That's not to say I wouldn't want to hear it.

I had been on Effexor XR 150mgs everyday for a year. Actually, the day the doctor I was seeing then diagnosed me with MS he sent me home with that prescription and the one for Rebif.

But lately I have felt like it's stopped working.

So, I am now in the weaning down process, cutting my dosage in half every 10 days so that I can start a different medication in the hopes that it will work.

You can certainly tell when I've just cut the dosage back too! Talk about mood swings!

What I didn't expect was that weaning off of an antidepressant would cause insomnia.I wasn't expecting the weaning process to bring friends!

I have spent the last year and a half fighting fatigue and losing. I couldn't make myself stay awake.

Now I can't make myself go to sleep!

Oh the irony!

Counting today, I have gone 11 days without taking a nap and only being able to sleep three to four hours at night.

Yeah, it's fun.

You know, I remember saying to The Hubs a few years ago that it appeared that we had become an old boring couple. Nothing ever changed, nothing interesting or different happened.

We were stuck in a rut.

And now things certainly have changed, doctors find my brain interesting, and I'm afraid of something different happening everyday.

I think I miss that rut!

One Of Those Days

Ever have one of those days where you wake up and you just know that that day is going to be shit and you should stay in bed, but you get up anyways?

Today is one of those days for me.

And I should have known better too because, yesterday, I had a fantastic day. I felt great, got a lot of stuff done, actually cooked a meal. The kids were happy.

That was the calm before the storm.

I hate my new(er) local neurologist and am considering going somewhere else. And I don't think that it's me being irrational here.

For example:

Last Friday was my #2 Tysabri Infusion (which is going great!) and I'm in my little infusion room, watching Snapped (makes the hubs nervous), when my doctor walks in looking for samples of something.

I said "Hi, Dr. Goober" and she said "Oh, yes, well, hmm, hello."

I then said "I'm glad I saw you today, I need to ask you a question if you have a minute."

After that, I'm pretty sure that I witnessed her having a mini-breakdown. She was running her hands through her hair, and she said "No, no minutes today. There's never enough minutes! Where are those samples? I don't have time, make an appointment."

And she whisked out the door just as fast as she came in.

Odd, I thought.

But then the infusion nurse, who is really cool and a fellow Alabama dweller, tells me that she's like that a lot because she can't handle it being so busy.

Now, before I go on, I want you all to understand that I think a woman can do anything she sets her mind to.

But......

For me, I don't like my doctors to be women. It's a personal preference.

I just think about how I kind of get a little...well....crazy when things are hectic and I just don't think I would be good being in that stressful position.

I mean, think about it, if say, you were allergic to nuts, would you go to work for Planters where you're handling the nuts and putting them in the little tins?

I wouldn't.

If you were once a woman but switched yourself to a man, but kept your nether organs, and then have a baby with your wife and you say "We don't want this baby to be picked on because of a different lifestyle", would you go on TV, magazine covers, countless interviews announcing to the whole world?

Well, that one wasn't a good example, but you get what I'm saying, right?

But then I start thinking about starting the whole, painful, long, drawnout process of starting over again with another local neuro.

There are a million other painful things I would rather have done to me than to have to do that again.

Here's my wish:

I would like to find a MALE neurologist who is on the cutting edge of everything with MS, have the compassion of a woman but the stability of a man, and who doesn't want to bother me with driving to his office, he'll just come to mine! And best of all, ALL SERVICES WOULD BE FREE!

What are the odds?

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 much...um...special 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!

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.

Isn't That Innnnteresting?

So, I had the appointment today with my new local neurologist. I will say that she passed the hub's inspection and got the "She's Not A Quack Or An A%&Hole...YET" stamp of approval. Seeing as he's the active medical proffessional in the family, and he's a really hard one to get by, she did pretty good.
He's the kind that goes in looking for intelligence, knowledge of the disease we're dealing with, the ability to make decisions about said disease, and they also have to be ok with the fact that he's going to be very involved (he's a doc) and will be with me at every appointment. If they pass all of these things, then we will proceed with forming a doctor/patient relationship.
I, on the other hand, go in and base my very factual opinion on things like bad breath, hair styles, do their shoes squeak when they walk (I know this sounds weird but it drives me bananas!), are their pants too short, do they talk with their eyes closed, and do they wear too much cologne/perfume. Oh, and they can't be "close talkers". If any of you were ever Seinfeld fans you would know what that means, but for those of you anti-Seinfeld-ites, it means that they get way too close to your face when they talk and it's really uncomfortable. This is a huge no no if you're anywhere near me. I need my personal space, and if you come into that, you might get hurt.
As you can see, both the hubs and myself base our judgments on highly educated check lists.

One thing I've noticed since being diagnosed with MS and local neuro shopping, is that they seem to think that all of my symptoms started the day I was diagnosed. Have you all noticed this?
Like today, we're going over the usual first appointment snoozefest stuff and she would say things like "Have you ever had numbness or tingling in your feet?" And I would answer "yes" and then she would ask how long ago and I would tell her off and on for two years. She would then look at me, puzzled (and they all have), and say "But you've only been diagnosed for seven months, right?"
So, I'm guessing that I'm completely abnormal in this field right?
None of you had ANY symptoms until the doctor came in and said "Well, it looks like you have MS". Then, on your way out of the doctors office, you fell down twice, you lost the ability to speak, you went blind in one or both eyes, and you started forgetting things like where you parked your car.
Then come the questions like "When did you have your first exacerbation?"
See, this question for me is a hard one to answer. I remember as a teenager that I always got migraines and that one time I couldn't see out of my eye and I do remember it hurting to move my eyes (you know, like look around) but seeing as how I'm 30 now, I don't exactly remember what age that happened. Plus, I used to fake a lot of illnesses so I know my parents didn't take me to the doctor for it.
So, I explain all of that (again) and she says "Well, do you think you were 19?" No, I know I wasn't 19.
"How about 18? Do you think it was when you were 18?" Nope.
We did this until we got to 16 and I said "Yes! You know, I was 16 when I had optic neuritis." I had an epiphany people!

But, like I said, she made it through the hub's check list and I liked her shoes so I think we'll give her a chance. Plus my neuro at Georgetown wants me to switch from Rebif to Tysabri and they have a really cool infusion center there so that will be nice.
Who would have thought that at 30 I would be impressed by nice shoes and great infusion centers?