Why am I Having a Difficult Time Making This Decision?

I need to be at peace with my decision to take or not take Copaxone. But I have so many, questions, so many uncertainties. I didn’t have this level of uncertainty when I made the decision to begin Rebif – I just did it. This time around I’m feeling so different, so vulnerable.

Rebif was a nightmare come true. How do I know Copaxone is going to be any better? Can I cope with the side effects? How will I know if it's working? How will I know if it isn’t? What happens if I decide not to begin taking it? Can I overcome my hang-up about giving myself a needle each and every day? What if the medication is wrong for me in that I should have been diagnosed with either primary progressive or secondary progressive ms?

I haven't told my neurologist about the tingling/numbness remaining in my fingertips - I've been 'ostriching'. For one thing, it is very difficult to get an appointment to see my neurologist, he’s in high demand. I did, however, tell the nurse, and she said she'd call back in a week, but I haven't heard back from her (Good, I didn’t really want to hear from her anyways). I feel defeated though, as if I've let myself down by not following up with her or that my ms might be progressing faster than expected. Am I such a control freak that I think, for even a moment, that this is of my own doing or that I have the power to stop it or slow it down?

When I was in session with Dr. Rachel, she asked why I hadn’t yet started my new medication. I wasn’t able to answer; I couldn’t articulate any particular reason or feeling as to why I was avoiding beginning the meds. As we talked over topics such as its effectiveness, side effects, cost, administering the medication, we finally got around to the big topics of ‘what if this isn’t the right medication for me because I have primary progressive instead of relapsing remitting ms?’ and ‘what if it doesn’t work?’ Addressing these would entail confronting my fears of the disease having progressed already to secondary progressive or even of having been misdiagnosed with relapsing remitting when perhaps I really have primary progressive.

Okay, now would probably be a good time to address these two topics so that I can get on with my life.

Big Scary Topic #1: What if’ This Isn’t the Right Medication For Me? What if I have primary progressive or secondary progressive ms? How will my life differ? Will there be any difference in my level of activity? Will there need to be any consideration given to our living arrangements, our finances? Will I become less able more quickly? Will I be able to maintain the same level of lifestyle – work, play, mobility? Of course nobody on the planet is able to answer any of these questions. Not my neurologist, not the nurses, certainly not me, not my employer, nobody. No one. Nemo.

What I am able to answer is… deep breath… it will be okay. Along with my family and friends, I will carry on. It may not be easy, my life may have many challenges, but I will be alive, I will be strong, be committed, be focused and I will continue to meet my challenges head on with the support of loved ones. As I do. For now, I will choose to trust that my diagnosis of relapsing remitting ms is correct. I will carry on under that assumption.

Big Scary Topic #2: What if’it Doesn’t Work? What will I do if the relapses happen with increased rapidity, frequency or intensity regardless of taking the medication? Again, how will my life differ? Will there be any difference in my level of activity? The uncertainties are staggering. Again, there are no answers.

I do know that I must, for my family and my own peace of mind, do all I can in the meantime to hold back the ms demons. I’m not ready to give up. I’m not ready to lose mobility. I’m not ready to admit defeat. I’M NOT READY. I’M NOT READY. I HATE YOU MS!! YOU DON’T HAVE A PLACE IN MY LIFE – YOU’RE NOT WELCOME!!!!!!! I’m taking the reins now, come ____ or high water. MS, you WILL NOT dictate to me when I will no longer be able to do things. I will take my new meds. I will keep YOU, bastard ms, at bay as long as it is in my power to do so. I am angry, I am resentful, I am frustrated. However, I am not a wallflower, I am not weak and I am definitely not waving a white flag. I am willing to do what it takes. BRING IT ON YOU SONOFAB%*#$.

Alright. Ahem. Now that I have confronted my own fears and concerns, had my emotional rant; it is time for today’s action plan:

1. Make the phone call to make arrangements to have the nurse meet with me for training on Copaxone.

2. Pick up my prescription from the pharmacy and drop of old meds and sharps.

It doesn't seem like such a big hurdle now. Just a couple of minor things that can be taken care of before I even get home from work today. Easy peasy.

Woke Up, Got Out of Bed...

... dragged the comb across my head...

I'm sure you all know the Beatles tune, my apologies if I've put it into your head for the rest of the day.

But I digress. Is that how you start your mornings? Just wake up and hop out of bed? Lately, I've been taking the time to perform the "thingy". Mom knows what this means - I believe it's called the main central vertical with Jin Shin Jyutsu. Why do I do this rather than leap out of bed like I used to?

1. It is a lovely, relaxing way to start the day.
2. It helps me feel better. I don't have proof that it works to keep my terrible headaches at bay, but since I've been doing this I haven't had any.
3. It is drug free. This is a very good thing in consideration of the abuse my poor liver took when on Rebif.

So, as I lay in bed this morning slowly progressing through thingy, I contemplated today's agenda. Finish preparing minutes from the Maui meetings, meet with Michele for a quick lunch at Timmy's, call the support program for Copaxone, get blood work done to see if my liver enzymes are improving... What else? How could I forget? Tonight, aside from laundry and dinner prep, I must sew Daniel's new badges on his Cubs uniform.

An upside to my particular symptoms with MS is that the tip of my left index finger is usually pretty numb. Doesn't sound like much of a silver lining, but it truly is when faced with a small stack of badges and the inevitable pin pricks. I think I've got four to sew on: 1 year bar, group, area and link badges. I may be forgetting one, but that's alright, I'll discover it when I start sewing.

Thingy done, I get up and begin the morning routine. Get lunches ready, gather clothes for the boys, restock the diaper bag, and so on. Throughout the routine I'm also taking an inventory of how I feel. I can't help it. I don't want MS to rule my life, but I haven't reconciled myself with it yet. The monster hasn't settled in the back of my mind as I'm told it will when I've come to grips with it. Letting it go and getting on with my life seems an impossible feat at the moment.

Numb left index fingertip - check.
Vision - good so far.
Left forearm - strange, but fleeting, tingles.
Left hip - sharp, shooting pains that didn't stick around for long.
Numb toes - what toes? Are they still there? Quick visual check. Yup. Can't feel them, but thankfully they're still there.
Headache - thank goodness. No headache again today.

In the shower this morning, for reasons unknown as I've never held my hands in this manner before, I held my hands palm upwards with my fingers straight up as though holding two imaginary glasses of water. As the water ran down them I felt the strangest sensation. It's difficult to explain, but bear with me. It was as though all the nerves throughout my body were on high alert, slightly tingling. If your mind just fell into the gutter, it needs to get back out - this is a family friendly blog. I felt almost weightless, as though I was floating. Odd. Oh well, on with the day, no time to waste contemplating strange floating feelings.

Half an hour later after getting dressed and getting the boys settled in at daycare I returned to the van. Rather than feeling gloomy in preparation for my commute to work in the pouring rain, I found myself smiling. Honestly, I can't remember the last time I caught myself just smiling. Feeling good. Maybe, just maybe the beast isn't sitting directly on my shoulders any more. The removal of the beast's weight, while it may be only temporary, is perhaps causing me to feel weightless.