Archive for November, 2011

15

NMS Blog Post: MS Walls

I’ve been recently invited to write for the National Multiple Sclerosis Society’s blog! What an honor! They contacted me out of the blue. Apparently, they are friends of this site. Who knew?
My first post on their website can be found here. Its called MS Walls.

Please check it out and leave a comment! Thanks for the support.

Who am I thankful for? YOU!

Nicole

24

MS Pill – Part 1 (Video)

I have taken individually over the past 11 years Rebif, Copaxone, Avonex, Betaseron, Novantrone, and Tysabri. I will soon start the oral MS pill Gilenya. This is part 1 of my MS pill journey.

Multiple Sclerosis (MS) Pill Gilenya-Part 1

18

Am I Broken?

Not too long ago I mentioned that I was entertaining the idea of a M.S. medication change. Well, we’ve weighed the risks and finally pin-pointed the direction we are moving in.  One of the latest things out there: the pill for M.S. Since it is so new I will chart my journey with you and let you know how I’m doing. Per chance I may even dare to walk again!

At this point my husband would usually tell me to calm down. In this particular case it just so happens that may be easier than normal because, although I’ve done all I need to do on my end, the medication still hasn’t come in yet. If you know how anal I am, you probably would feel sorry for my neurologist’s nurse. I now think she has caller ID because they don’t seem to be returning my phone calls anymore! Well, at least not as promptly as I deem appropriate. I hope she isn’t reading this! By the way she is very nice. I just found a way around this. I can email my doctor!

WHAT?!

I call the nurse. No answer. I email the doctor. Problem solved.

Well not really… after all I still don’t have the medication! So I’m in between medicines. I have more fatigue and weakness than usual. Inevitably with my fatigue there are irritability, depression and esteem issues tagging along. My brain is foggy and to top it off and I think I’m gaining weight!

But low and behold today I’m feeling pretty good. That’s the thing with this bloody disease. Today could be an entirely different picture than yesterday. It can be a picture worth sharing.

I came across an excellent comment from David “ Sometimes we can be very hard on ourselves, but with MS I have to remember that the new me is just different and damaged. But, certainly not broken and worthless.”

End Of Rope

Those are great words to live by. I try to remember them but lately I’ve been hanging on by a string and I feel I’m just damaged…that’s all.

18

I Surrender Again

Someone posed the thought of surrendering to this new normal of mine. A state that includes no walking, occasional confusion, memory lapses, weakness, and infinite fatigue. It seems like a lot, but quite frankly, I thought I had already done this.

To me this falls into the realm of acceptance, adaption, and accommodating. All things I have already checked off my “to do” list. Okay, I have my moments. I do recognize I’m a work in progress. I now realize that last month according to my post, I risked putting myself in harm’s way for the sake of doing it on my own.

But surrendering to this state takes things to a different level. I confess I do carry a rather large chip on my shoulder. Eveybody can’t see it, but it’s definitely there. It’s mostly in my mind set. I guess it would be freeing to let go of that. Like dropping dead weight.

For me surrendering is not being stagnate. It doesn’t mean I would stop taking my medicine or therapy. It does mean that I accept what is. Accept that right now I can’t do all the things I use to do. I wouldn’t fight it so much, instead I would accomplish things within my limitations. The goal is to focus on what’s happening at the moment. Living in the moment.

For example, I still try to use my walker around the house from time to time. But I can’t. I can’t do it. I’ll attempt a step with the walker, and go nowhere or maybe find myself on the floor! The thing about MS is that tomorrow, I may be able to do it. But at this moment I cannot.

I would later say from the floor, “Using my wheelchair is so much easier.”

That’s what I call surrendering to what is. I just have to remember to keep doing it over and over again!

31

Joy Of Complaining

Due to the wrath of Multiple Sclerosis, I left my husband in Silver Spring, Maryland, and temporarily moved in with my parents in Gonzales, Louisiana. I give you the entire scoop in My Story. It was during that stay when I first turned to writing to keep me from completely losing my mind!

I stumbled upon an old journal entry from early 2010. I was fairly surprised to see what I found.

Friday nights are the hardest. I miss Tom. My dad is sleep. Mama is on her PC and/or the phone. She’s probably doing homework with classmates. She’s getting a Master’s degree.

It’s 9:58 Friday night. I’m pretty restless. The odd thing is, if Tom and I were together in any state we would most likely be doing something similar. Him watching TV and me working on this damn laptop. We stopped going out on Friday nights a few years ago. We use to call them “Fun Fridays” Pretty lame. I know.

If I could just drive everything would be better. I know it would. I want to leave this damn house. That is, on my own terms. I want to make it clear that though I complain, I am grateful. “The struggle between Damn and Thanks” is my daily reality. If I could just drive!

The interesting thing is at that very point in my life I was so much more physically disabled than I am now! Can you imagine? I thought the answer to all my problems was driving.

I wish!

I mentioned leaving the house on my own terms, because I never really wanted to be relegated to my parents home without my husband. I had Multiple Sclerosis to thank for that! When I was in Maryland, Tom and I lived in a third floor walkup apartment building. If I stayed there any longer it would have been a fire hazard at the least and just getting from the apartment to the car had become a 10 minute ordeal. LOL! At the time it just felt like I was being kicked out.

Stairs to apartment

I was in a wheelchair and lived on the third floor.

Now, almost two years later I think I have finally gotten over not driving, but I do still feel a bit isolated. But I’m really not!

I think I just like complaining. Smile!