Working on the writing in my blog more often thought process I thought that I would share the insanity that is going on today.

Today is “the car show”

I say that like it’s the only one in the world to ever have existed. Clearly everyone should know exactly what I am talking about. I mean it has been the only thing going on in my household for at least a month now.

But for those of you that don’t live in my house, or my little town, today is the Mount Holly 13th Annual Car Show and Armed Forces Appreciation Day.

My husband has decided to become altruistic and run said event. So just like election time I have been single parenting it for a while now. I have definitely gotten the hang of it. I don’t mean to brag, but… My kids are awesome!

What’s really nice though is that tonight, at the end of things, I get a night off. My little brother is coming down and sleeping over. My mom has offered to watch the kids over night. So after fireworks I say good bye to the kids and hello to a huge dirty martini waiting for me at the bar!!!!

I love that today there will be free bounce houses and face paintings for the kids. My friend made a quilt for “quilts of valor”. I can’t wait for the presentation ceremony. That will be awesome. Also the tiny library in town is having a book sale!!!!

I say who needs the cars? Today is going to be lots of fun! Unfortunately no time for a nap. And right now I should be cleaning a bathroom or making up the kids over night bag. I am such a procrastinator.

I hope that everybody else has a great Saturday!

So I’m walking down the “main street” in my town and a woman grabs my arm and pulls me over to the wall. I wasn’t too thrilled about that. And asked me if she can ask me a question.

No I did not say you just did.

She seemed really upset about something. I thought that she was going to ask me were something was. Like the hospital.

But no it went more like this;

Lady- I know that I look like I’m doing ok.
And as I just pointed out, she looked like she should be asking me directions to the hospital. So I was a little confused.
Lady- I have decent clothes on and jewelry.
Now I actually payed attention to what she was wearing, I have a tendency to overlook those things. She did look decently dressed. Possibly new clothes. A giant diamond ring, may have been fake I don’t know, and other jewelry. So I agreed with her. Yes she looked fine financially speaking.

Me in my head- where is this going?!?

She’s now holding my hand and I am quit happy that I did not wear my ring today. (Yes that’s what I was thinking)

Lady- well I’m very hungry.

I must have looked skeptical because then she added…

Lady- and my daughter is in the car back there (I saw no car, no daughter) and she’s hungry too.

It’s possible that I still was having a hard time believing this lady because she added…

Lady- and she’s pregnant.

Well fine.

Lady- I was wondering if you could buy us some food.

Well thank god she didn’t ask for money. I don’t have any.

Lady- there’s a chicken place right over there could you get us some fried chicken? (We are literally standing outside a pizzeria.)

I said why don’t we get some pizza from right here.

Lady- well my grandson really likes fried chicken and he’s in the car too.

What?!?

Me- how about we just go inside right here and I will get you some pizza.

Lady- ok can you get two slices?

As we are half way to the counter

Lady- can you get 4 slices so that my grandson can have 2 slices.

Now we are at the counter

Lady- actually could you get me six slices or maybe a small pie?

WHAT?!?

Alright so hungry person, I’m good with feeding them. I asked the guy behind the counter for a whole pie. Then she pipes up again talking to the guy behind the counter

Lady- do you have chicken fingers

Yes of course they do

Lady- could I have an order of those?

Now I stop the crap. I looked at the guy and said no, just the pie. Then…

Lady- no, no, that will be in stead if the pizza. My nephew really wants chicken.

Your WHAT?!? And what about all of the other people that you said you needed to feed?

So I tell the guy just the pizza and start wondering which one of us has wholes in their brain.

Lady- does that come with drinks?

Guy behind the counter- no, you are going to have to convince someone else to buy you that.

What?!?

So I paid and left.

I have no idea what just happened. I had no problem helping this lady out, but holy crap was she sketchy.

So advice taken. I am taking my life back as much as my brain will let me.

Right now I am at quest waiting to have my blood tested for JC Virus antibodies. If they find them that means that my body is currently trying to fight it off. So then obviously that means that I have the JC Virus. If they don’t find any antibodies then I am still free and clear. Lets hope for the later.

I went for a walk this morning. Only 1.75 miles. I have been walking but only a little. So I am going to try to pick that up. We’ll see what happens when summer temperatures hit.

I have already planned my nap into my day. So check number two on my take my life back list.

I also downloaded an app onto my phone to remind me to take my happy pills. Otherwise I forget them. And when I forget them I am a hot mess!

I will see how this goes and try to incorporate some other things as I go. It seems it is time for me to jump back into research.

When I was diagnosed 3 years ago, 4 years ago? I can’t remember. I thought fine, I’m going to have to live with these flare ups. I won’t know when they are going to happen or what they are going to be. I also don’t know how long it will last or if it will ever get better. Or how bad it is.

But you know what? I was ok with that. I would just keep living my life and when a flare up came I would deal with it. I wouldn’t psych myself out and worry about what could happen. I was just going to live in the here and now and be happy that I am flare-up free.

Then my biggest concern, and what I thought was going to be the only thing that changed my day to day life, was the shots. I was certainly not pleased with having to give myself a shot every day for the rest of my life.

Even that though, I said, ok this isn’t too bad. I can still go about the rest of my day like normal. I kept attributing my bouts of fatigue to the new holes. It seemed that that was really the only way that I could even tell that I had them.

Then once I switched to Tysabri I didn’t have to deal with the shots anymore. I was (and possibly still am) JC Virus free. So I didn’t have to deal with possible impending doom. Then I started to attribute the fatigue to my meds running out. Which probably isn’t all wrong.

But now I need to come to grips with my new reality. I need to stop thinking, ah, this is nothing! I’m fine. Because this is actually something. I have a degenerative disease that is eating away at my nerve endings and there is no cure.

I’m not trying to sound like I am down on myself right now. I am not. The Celexa is still keeping me quit happy.
But I am now coming to the reality that yes indeed my life has changed.

My every day life.

All of the support groups and what not say “I have MS, MS does not have me.”

That is not true for me right now.
It is time for me to tell those holes who’s boss. Maybe I’ll take some lessons from my husband. He seems to be able to get everyone to do whatever he wants. I want to be able to do that with my brain!

“Damn it brain! I will give you a nap but then I get the rest if the day!”

It’s clearly a work in progress.

Wait for it….

I have MS.

Shocker, I know.

Apparently everything going on with me is normal for a person with MS. It’s just the new fun filled world that I get to live in now.

So no new MRI. I was upset about that. I like to have proof that there are holes. It makes me feel like I’m not loosing my mind.

Now they are testing for the JC virus every 6 months so I’m being tested for that again.
I have decided that even if it comes back positive I am going to stay on Tysabri for another year. Studies show that I will most likely be ok the first year. Of course I haven’t talked to Rich about this. And he may not be so cavalier with my life.

The Nero has sent me for a cognitive function test. He said that it will help pin point exactly where and what the problem is. After that they can give me some therapy to help with it.
But no magic pill. Which is what I was hoping for.

My mom thinks that I am being too hard on myself. That I shouldn’t be expecting so much from myself. All I’m expecting is normal though. I didn’t think that that was too much. The doc said that this is my new normal.

Well I’m here to tell you that it sucks!!!

When you have vertigo and you go to the doctors they ask you to describe it. Previously I had no idea how to do that. They would prompt with well are you spinning to the left or to the right? Or is it like a pushing or pulling. For me that was so many questions in one question that I just wanted to sit down and have everybody shut up. Now I felt like not only was my brain trying to sabotage me but also the doctors asking the questions. I mean don’t they understand that I have a hard enough time concentrating on just one question. The idea of having to explain what vertigo was was enough. Now I have to figure out directions and if it feels like someone is moving me? Crap!

So since things have been pretty crappy for me recently I have put a lot of thought into that question(s). Some days I am spinning the right. Actually most days. Today though the vertigo is as bad as it was back when I was diagnosed and I am spinning to the left. So much so that I have a constant feeling that I am leaning that way. I probably am actually, but it’s just me here so there is no one to confirm. And if I try to figure it out in a mirror I will probably fall down.

At the same time that I am furiously spinning to the left I am also being pushed and pulled at the same time. It’s a forward and backwards motion that feels nothing like rocking. It’s like being on a carnie ride that is trying to through off your equilibrium. Add to that the shaking of my hands and I will tell you it is not easy to type this blog.

But today I needed my form of therapy. I needed to be able to write this down without someone telling me that they have had that problem before. I love when people try to make is sound like your problems are common. Which I guess is fine, they are just trying to make you feel better. And really no one ever knows what to say, so what comes out of their mouths is usually stupid. I have found myself in that position recently. I tried to stay quiet and not say anything, because I knew that what I said would be stupid. But then they look at you expectantly. Like they can’t go on without your stupid comment. I wonder if we bring these things upon ourselves. Do the stupid comments actually make us feel better? Do we need them? I don’t know maybe it is just their/our way of making sure that someone is listening to us. Well you are reading. So I have a captive audience.

Ok writing is getting harder so I’m going to try to sum this up.

I have been feeling like crap. Ridiculously tired all of the time. I have found that there is little that I actually care about when I’m tired. Matched with my filter issues it’s not a good time to be the wife of the Deputy Mayor. EEKKK! The brain fogginess crap is ridiculous. I have no idea what is going on half the time. And when I do I don’t have any idea of what I just did. If in the process I have hurt anybody’s feelings I apologize. But honestly it has been kind of a miracle that I have been taking care of the kids. Let alone that I managed to through a party this weekend.

Afterwards though I have to say did not go splendidly. Towards the end of the party I started to get the same reaction from people that I did 3 years ago. They wouldn’t let me stand up. They started doing dishes and getting me drinks and crap. Like I was incapable. (I was incapable) But I was the host damn it! Then the next day I got a lot of, how are you feeling today? Don’t feel bad, anyone would have been tired with the amount of work that you did. Well you know what, if you were making that comment, if you noticed the amount of work that I did, then I did something wrong. It should be seamless. I shouldn’t look so tired. (Maybe I should start wearing make-up *grimace*)

Alright the shaking is getting out of control. Hope everyone is doing well. I hope to write again soon.

Oh, one more thing. My words have been coming out funny. I’m thinking a word, but when it comes out the letters are all in the wrong place. Sometimes it’s the whole sentence, or the wrong word comes out even though I am thinking the right word. Alright I’m done. Even though I am having these crazy things going on right now I feel wired. Maybe that’s why I’m shaking?

I have found myself wanting to give people advice on this exact situation. When I’m feeling better I want to tell other people dealing with this to hold on. It won’t last forever. You will have energy again. Just take a day off. Of course sometimes that is easier said than done. I realize that, but the sooner you can take a break the sooner you will feel better.

With that said I want to point out that I am a “do as I say not as I do” kind if person. I have a very hard time following my own advice. And when I am in the middle of it, like today, I can’t see the end. I forget that it is there. Then I don’t slow down I just keep trudging along because I’m thinking “we’ll it’s not gonna get better and someone has to take care of this shit.”.

Gggrrrr! Well maybe I’ll rest tomorrow.
(I think that that is what I always say.)

My biggest problem is that I lose track of time. In kind of a big way. Not in a small way. I always remember the day to day things. Like pick up the kids or hey it’s dinner time and some people need to eat. But the week to week stuff, or worse the month to month stuff is just slipping through the cracks. I didn’t even realize that we were in April. I was going over a schedule with a friend this morning and she’s talking about dates and days and I’m like, no that’s a Tuesday, not a Saturday. That’s when I realized that I was a month behind. UGH!

This is especially frustrating when you are arranging plans for big (well big for me) things. Like next weekend I have a team for an MS walk. Yes I sent out info a month ago but forgot to follow up. I kept thinking to myself, oh I’ve got lots of time. I’ll do it tomorrow when I’m feeling better. Or when I’m not as busy. Although I have to say, I have no idea what I have been busy doing. I just feel like I’m always busy these days. Or I’m not busy, and I just don’t realize that the day has passed me by. I’m counting today by coffee cups. I’ve had three.

Back to the walk. All the sudden it’s next weekend. AH! I’ve raised a quarter of what I did last year. Which is really sad. My husband managed to get the team shirts donated by a very generous company. So that is finally taken care of. Design picked out, shirt sizes figured out and ordered. Why did this all seem so much easier last year? Physically I also have not been preparing. Last year by now I was walking about 6 miles a day. This year I have just started and am having a hard time with 3. Sunday is going to be rough. I certainly won’t be running it like last year. I’m going to have to put my competitiveness in my back pocket and walk with the kids. Yuck! (Love my kids, just love them, don’t want to walk as slow as them though.) So with the realization of how soon it is I sent out my feelers this past weekend. More money is coming in, more people have signed up to walk with me, and like I said the shirts are ordered and should be in Thursday, Friday at the latest. So yeah! That’s done and ready. I just have to deal with the slow walking crap. I’ll live.

Then I realized that I have nothing planned for this summer yet. I haven’t even started planning my Mother’s Day Brunch or Noah’s birthday party. It is very hard for someone who plans the hell out of things to start forgetting to plan things at all.

This is where my iPhone is going to come in handy. It will send me reminders when I need to do things. I just have to not push them back and say, nay I’ll do it later. Because later seems to not be happening. Also I need to remember to put it in my calendar in the first place. I wonder if there’s an app that will just remind me to get my shit together?!?!?

A quick overview of this book without spoiling anything for those of you brave enough to read a young reader.

Elizabeth, the main character, is a high school student who doesn’t seem to quite fit in. Then she is offered a job at a repository. Which was like a library for things not just books. You could take out clothes, furniture, kitchen appliances, really anything that you could think of from any time period.

After working there for a while Elizabeth realizes that there are even more unusual things to borrow from this repository. Magical things. This is when the story picks up speed and gets interesting. Her and a couple of the other kids that work there end up getting themselves into a world of magical trouble. You aren’t quite sure if they are going to get out of their predicament when the most unexpected things happen. Are they good things, bad things? You are just going to have to read it and find out.

Sent from my iPhone

I never really put a lot of thought into how my foot functions in any type of shoe. Then I wore flip flops today. I was excited to be wearing them again so early. After the last snow that we had I am ready for spring. It was a perfect end to winter. There was just enough snow to cover all of the trees, grass, and sidewalks. Actually, the snow covered everything except the streets. So it was beautiful and still safe to drive. That is one of the best types of snow. I put it right up there next to getting feet of snow. Then it is lots of fun to play in and you don’t/can’t drive due to the state freaking out and calling a state of emergency.

But, back to Flip Flops.

The mechanics of a flip flop are such that it is your toes keeping them on your feet. You flex your toes with every step. Thankfully my flipper issue isn’t so bad that I couldn’t do this at all. It is just bad enough that it took so much energy to do this that I was totally exhausted half way through the day. Stairs turned out to be the hardest endeavor. Flexing the toes just to walk was enough. With stairs I found the hardest part being that not only do you need to flex them enough to be able to take a step, but now you have to also flex them enough to get the bottom of the shoe over the lip if the stair. In hindsight I probably should have just lifted my leg up higher. But I just thought of that now. Just in time to walk up the three flights to pick my son up from CCD.

Now I’m left with a dilemma. Do I buy the cute new flip flops that I saw in the store today? Or forgo the flip flops all together now that I have issues? : /