Mourning the Alive

It's no big secret that I've been a little emotional lately. Hormones, multiple sclerosis flaring, pain, and stress are all taking their toll.

We made a run out to the lab to drop off samples, and decided to stop at the rebuilt Sheetz in Shoemakersville on our way home to check it out. Neither of us had been there yet since it reopened.

It's really nice. They have an indoor and outdoor seating area, an awesome soda and milkshake bar, the new MTO is snazzy, and they have a soft-serve icecream and frozen yogurt section with a ton of topping choices.

The increase in steroids has me starving but we're flat broke. I wanted a frozen yogurt bad and had quite the sad that we couldn't get one. Then I noticed a sign bragging about their wage increase and had the realization that if I was still working I'd be making over $50k a year by now.

I can't even afford a damn frozen yogurt to satiate my Prednisone fueled hunger.

Next thing you know, the tears started welling up. It really caught Chris off guard as he was trying to figure out what happened. Trying to explain what was wrong made it that much worse.

Suddenly acquiring a chronic illness is like a death, a death of the person you used to be. Everything about your life changes, and you start to change with it. You adjust the best you can, but sometimes grief hits in waves. There's so many changes and limitations involved. Things you have no control over. Losses that can't be avoided.

With some positivity and a good attitude you make the best of your disease and new life, but sometimes a loss will just punch you in the gut. Today was one of those days. 

It's hard for people around you too, that knew the person you were before the disease took over. It's even harder for them to understand the changes that take place. The limitations, financial hardship. Why you suddenly can't do the things you used to be able to do.

I miss my job. I miss working, and the satisfaction and accomplishment of a job well done. I miss the socialization, and most of all I miss the pay check.

Some days it's really hard to accept. Today was worse than most.

It's hard to explain mourning the life of the still living, but when your life is so drastically changed it feels like a death. There's so much gone that can't be retrieved. Including the person you once were. There's no getting that person back. They're dead and gone.

It's important not to dwell and move on. As hard as that may be some days.

I just saw an article about a PML case for someone on Tysabri that had just tested JC negative two weeks prior. (PML With Natalizumab Despite Recent Negative JCV Test Result) I'm about three months over due on my testing. I need to get it done, but if someone that was negative can turn positive just two weeks later and wind up with a deadly virus, does it really make that much of a difference? Is it more of a false security blanket to make us think we have some control over our mortality rate from treatment? So much just seems left up to the luck of the draw regardless of how much we research, and how diligent and careful we attempt to be.

So, while I mourn the death of what was I'm grateful for what at least still is.