Monday, May 21, 2012

planner schmanner

Do you know what I hate about MS?  Oh well, there really aren't enough words to answer that question, but the one thing I'm thinking of today is ---I can never plan for anything.

Generally speaking I am a pretty disorganized person.  I never owned a Franklin Planner (uhhh, does that date me?), half of my life is written on a paper calendar and half of it is on an iToy. I like to say that I have too much creativity running rampant to organize my sock drawer or closet, but maybe that's just laziness.

Still though, sometimes I would like to be able to say, "Yes, on Thursday I would love to meet you for lunch."  That's the kind of crazy, outlandish planning I did back in my old life.  My pre-MS life.  I knew that barring a major natural disaster or a really bad hair day, I could plan on lunch and go to lunch on Thursday.

Not anymore.

I can't plan ahead.

I may have all the desire in the world to meet a friend for lunch on Thursday, but I know now that I may wake up Thursday morning barely able to get out of bed.

It stinks.

I mourn the time when my biggest problem was a bad hair day.

How about you?  Can you plan ahead?

Tuesday, May 8, 2012

Ann Romney

I don't want to talk about politics, but I do want to talk about Ann Romney. I don't want to talk about Mitt, their money or whether she "works" or not.

I do want to talk about the fact that she has MS.  Just like me. 

You see MS doesn't discriminate. According to the National MS society website,  In the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. 

There are a whole lot of us. One big happy (?) party.

Ann isn't alone in her celebrity MS status, Alan Osmond and his son David, Annette Funicello, Prichard Pryor and Montel Williams all have MS.

I don't really know if Ann will change her residency to 1600 Pennsylvania Avenue Northwest Washington, DC next January.  I hope though, that the current shine of the media spotlight on her life and naturally her MS, will be for the good. 

My hope is that, a possibly really, really famous person struggling with MS will help shine the media spotlight on the rest of us.

The rest of the big happy (?) party.




Friday, May 4, 2012

if I only had a brain


Yesterday I bought a weekly pill organizer.  Yes, just another hit on my pride. I previously thought pill boxes were for really old demented people or really sick people. I am only sort of old. And I like to pretend that I'm not sick.

Yet, I came to the conclusion that I need a pill box.  I take Gabapentin in the morning and at night. Several times this week at around 11am the strange thought came to my mind, "Did I take my pills or not this morning?"  I didn't know the answer. 

It seems that when you are in a routine of taking pills every single day, eventually those days begin to run together in your mind and all of a sudden you can't remember today's events from yesterdays.  It's annoying and embarrassing and a little funny all at the same time.  Seriously, by 11am I can't remember what I did at breakfast time?

So enter the fabulous pill box.  It's actually going to be pretty handy.  Today at 11am I realized I had not taken my pills (again! Hello?!) and the pill box confirmed this.  Maybe I should re-think those thoughts about "really old demented people" because that makes 4 days out of 5 this week that I have taken my medicine late.....

So how about you?  Do you use a handy pill box or do you still have a brain?

Tuesday, May 1, 2012

C is for Copaxone


The week after my diagnosis, I sat in a Neurologist's office.  He was pretty matter of fact, stating, "I'm pretty sure you have MS, there's no cure, but some drugs are available."  He then handed me pamphlets for three different drugs, Avonex, Copaxone and Rebiff and said, "Study these and pick one."  I should have been a neurologist.

My husband and I studied the literature separately and came to the conclusion separately, that I would start with Copaxone.  The side effects presented in the literature seemed mild compared to the other drugs.  I was not that excited about the prospect of a daily shot, but decided the benefits of minimal side effects outweighed my aversion to a daily shot.

Several weeks later, a month's supply of Copaxone arrived on my doorstep and the following day a nurse came to train me on how to self-inject. The nurse was very kind but the whole experience was very overwhelming.  She showed me and my husband how to use a syringe and had us practice on a little plastic pyramid that had a rubber sheet at the top which a needle could go into.

The nurse handed me a syringe to practice on the plastic pyramid.  As I held the syringe in my shaky hand, I started to cry.  That moment was a crushing reminder that my life would never be the same.  I remember crying and saying, "There's a reason I was not a nursing major! I don't like shots!"

I am happy to say that once I composed myself, I learned how to inject properly, although using a self-injector helps a lot.  I don't particularly love injecting myself every.single.day. But for the most part it's no big deal, I've been doing it daily for about 5 months.

So. Do I like Copaxone?  Honestly, I'm not really sure.

Copaxone is injected daily, like I already said, and you must inject into a new spot every single day.  So over a weeks time, I inject into both arms, both hips, both thighs and my stomach.

I'm just not sure if the Copaxone likes me.  Every time I inject, I get a huge hard, red, hot welt that lasts for about 5 days until it fades into just a purplish bruise.  These welts are usually about 3-4" wide.  I look like some kind of drug addict.  My thighs seem to react the worst, which I can't really explain since my arms are much skinnier, so it seems logical that they'd be in the worst shape. On each leg I have the current welt, last week's fading welt and the faint marks of the two week old welt.  Trust me, it looks sexy.

I've talked to Copaxone's customer service people, "Shared Solutions" multiple times.  They are very friendly and helpful(?) it's just that none of their advice had changed my welt situation. They've recommended warming injection site before injecting, or an ice pack on the site after injection, or both. They've recommended adjusting my needle depth higher and lower. I've tried all these things and nothing is working.

I do think I feel a little better.  Is it the Copaxone?  I don't know.  Maybe it's the Vitamin D I started taking.  Maybe it's just a coincidence and I would have felt better now anyway.

One thing I know for sure, I will not be wearing a bikini* this summer.






* Ha, ha. I've never worn a bikini.