Monthly Archives: December 2016

Without Hope, What Else Is There?

I’m gonna say it! (You might want to cover your virgin eyes if can’t handle it.)

Having MS fucking sucks!!!!

Any other word besides the big fat “F” word just doesn’t convey the message I want!!!

So, I’m gonna say it again … MS fucking sucks!!!!

* * * * * * * * * * * *

November 10th marked two years since the dreadful diagnosis came … “The MRI and lumbar puncture confirm what we suspected. You have MS.”

These two years certainly have held their fair share of challenges.

At first, the challenge was to just get used to the idea of having MS. (As if anyone can “get used to” the idea!)

The initial steroid treatment calmed the episode. There was no more weakness. There was no problem with balance. Medication (Aubagio) was started shortly after diagnosis. It seemed I would be okay and for the most part I was able to continue with my normal activities – dancing, walking the dogs, household chores.

As the close of the 1st year approached, walking became more challenging and fatigue was apart of everyday life. There was no more dancing. No more walking the dogs.

Shortly after the beginning of 2016, things began to get worse. After several visits with Dr N, we decided to try another medication – Tysabri. We had – I had – great hope that Tysabri would be it for me … once I got past the possible side effects. To great relief I didn’t have any!

Unfortunately, my hope was short-lived. Within four months … four infusions … things were not getting any better. In fact, they were getting worse!

Since every one responds to treatment differently, we pressed on with great hope things would improve.

Dr N ordered an blood test to check for Tysabri antibodies after my 6th infusion. I waited just about two weeks for results before it was confirmed. I developed antibodies to the Tysabri and wouldn’t be able to continue.

No 7th infusion for me!

I felt my heart sink. Now what? What’s next?

We quickly started to explore a couple options. One oral; one infusion. They both have their own set of side effects. Yes, some VERY scary.

I finally chose Lemtrada.

To say I’m not concerned or “scared” would be a complete lie. I am. BUT I HAVE HOPE THIS MEDICATION WILL BE MY CURE*. (*Even tough there is no cure for MS).

My neurologist and his infusion nurse participated in the clinical study. They have seen great things happen to the patients.

I am apart of a private Lemtrada Facebook group. Many members have posted their experience (good, bad and both). While there are some Negative Nellies and Pessimist Petes, I’ve found the information shared helpful and hopeful.

There are two recent posts that stand out in my mind.

1. A woman posted a photo of her feet crossed at the ankles. She had beautifully tanned legs, a flawless pedicure and the most spectacular pair of red high-heeled strappy sandals. The shoes caught my eye! I LOVE SHOES!!! Then I read the post. This group member shared she was walking in them AND that she even started running!!!! (No, not in the heels!)

I can’t remember how long she had been post treatment. I was just impressed she had heels on and could walk in them!!! I was impressed she was running!!! (Not that I want to run … I was impressed just the same.)

2. Another woman posted she was able to walk after a long period of being confined to wheelchair.

I want to fight! Every inch of me wants to fight and not succumb to the paralyzing grasp of MS.

It’s not easy.

By the end of the day (most days) I can barely walk!

Independent walking for any distance is pretty much not happening. I have to have the assistance of my rolling walker. Yes, it helps me maintain my balance and allows me to walk (very slowly). But let me tell you what! It fucking sucks having to use a walker to walk. I feel every single eye on me! I hate it!!!! I want to scream!!!!

Getting out of bed most mornings is challenging. Just the slightest movement causes pain. Not to mention the “hopelessness” (that I have IT forever).

Staying positive is a feat in itself!!!!

I try to stay positive not only for me but for my beloved. He has been a trooper! Even through the long drives to the doctor (2-1/2 hours). Even seeing me agonizing with every movement. Even when I feel helpless, hopeless and crying like a baby. Yes, even through his anger and grief. To say he’s pissed that I’ve (we’ve) been cursed is an understatement.

We both knew things would be different. We just didn’t anticipate how much IT would affect every aspect of our lives. (That’s a story for another time.)

In two short weeks, my infusion begins. (Round One is five days in a row over approximately eight hours each day.)

I’m all set and ready to go.

The porta-cath was inserted a few weeks ago. I now have a 2” scar and a lump where the port now lays just below my right collarbone.

Insurance is squared away. (Thankfully what the insurance doesn’t cover the MS One-to-One Program helps cover.)

My MS One-to-One nurse is in constant contact.

Did I say I’m ready?

I am SO ready!!!

Figuring that the Tysabri wasn’t working since at least July, I haven’t been on any MS medications. My body feels it too!!! Every. Single. Day.

Can I ask a favor?

Please pray for me and S as I begin this new treatment … pray for peace and comfort that we made the right choice … pray that I am able to tolerate with little or no side effects … ask God to lay His healing hands on me and rid my body of MS.