Hello Again

Why Hello Again!

Did you ever notice that throughout the day you have a million thoughts, that you think, WOW! This would make a great blog! But you never actually write it. You never even make it to a computer. Sure sometimes you write the thought down. Hell I have an entire section in the notes on my phone of future blogs that I want to write. I even bought a book of ideas to write about.

Yet here I sit, with nothing written.

So lets start, again.

I’m going to start with me. Just in case you are new here. 🙂

There are the usual boring things. I have 2 crazy boys, I’ve been married forever, and I live in the cutest old town with all of it’s dirty little edges.

What is on my mind right now though, I am on my local BOE. It has been a huge struggle. It has given me stress and happiness. Honestly though, most of the time I feel like I am working by myself. I am banging my head against a wall. Why is it that people say they care about something, go out of their way to be part of something, and then NOTHING! Why?!?

This is actually why I stopped writing. This blog is tied to my real name. So I am forever afraid that someone will read this and somehow I will get in trouble for what I write. There are so many rules. For some reason there are more rules and guidelines for the members of a Board of Education than there are for your local government. Thankfully there is also significantly more training in New Jersey for a Board member. That should say something fellow Jersians. There is a reason our Government sucks but we have the best schools in the country.

I just want people to care. I just want people who say that they care to actually care.

Alright rant over. 🙂

I started this blog as a way to talk about, vent about, dealing with this ridiculous disease called Multiple Sclerosis. My invisible monster. I hit my 100th Tysabri infusion last month. It felt like somehow I was getting somewhere. Just like when I was on Copaxone. When I finished a box of shots I got all excited. It felt like, Yes! I have accomplished something! I must be done now. This has to be over. I have made it to the end! Then the next box of shots shows up at my door. DAMN IT! Same exact situation with my infusions. Just last week I went to my 101 infusion. And being the Disney nerd that I am, I was upset that there were no puppies. Puppies seemed like the most appropriate way to celebrate my 101 infusion. But, no puppies. And I still have to go to my 102, and my 103, and so on.

Many more things catch my attention, drive me nuts, and make me laugh than my life with MS. This is my place to share those things with you. I hope you enjoy the crazy place that is my brain.

 

Cognitive Issues

Spinning to the Left!

Spinning to the Left!

Ok now that we know it’s definitely Vertigo…

So things have not been great. 😦

I haven’t been saying anything at my Neuro appointments or at my infusions when they ask me if anything is new. Cause technically it’s not new. Just worse. And I blame that on how I am living my life these days. I pretty much gave MS the middle finger and went back to living the way I want to. Busy most of the time. Always with plans. This is how I live. This is how I thrive. Unfortunately my MS disagrees with this attack on life. So I am full steam ahead for a week and then on the couch for a month. Uhg! At my last infusion I talked to some other MSers. 

I know. Hold the phone. Shocker! Janet talked to other people?!?!? I know.

But I found out that their are drugs for Fatigue. And of course I knew that there were drugs that helped you stay awake. Anyone who has ever pulled an all nighter for college or watched a movie knows this. But just for MS patients? I didn’t even think of this. So the research began. I looked up provigil. Seemed good. I looked up nuvigil. Seemed even better. Then I came across Ampyra. Seemed like it would solve the root of the problem. Not just the fatigue. 

So instead of calling, I just stopped by my Neuro’s office. That seems to have the best results. I got to talk to the “head nurse” who usually solves all of my problems. I really expected to leave with a prescription. 

But no….

She feels that my problem is not just my walking, she’s right, it’s more cognitive issues. Ampyra only solves walking problems. Which are minor for me. So she wants me to see my Neuro for more testing. So Friday I have an appointment with him. Supposably he will send me for cognitive testing. These should see just how bad my brain has gotten. 

I know that I have no new lesions. But before the Tysabri kicked in I developed lesions in the thought process section of my brain. And I forget stupid immediate things now. 

Ex:

Not only can I forget my car/house keys/purse somewhere. But I will actually get into an argument with you about how I never had them in the first place!

And other stupid little things like that. 

Not to mention the inability to find the right word regularly.

Or loosing an entire day. 

Oh my god is it 10pm? What did we do today? You did what?!?!? Where was I? I was sleeping? I was sitting right there watching you? I have no memory of any of this. How is it Sunday night already? 

Yeah…..those are my weekends. 

I know that there are a lot of my fellow MS warriors out there that experience this same thing. You are reading this saying “Exactly.” 

But I’m freaking out!

I feel like I am loosing my mind.

So back to the Neuro I go. I just keep hoping that there is some way to make this better. Rearranging my life to fit this crap in is not something that I want to do. 😦