My First Flare-up

A few weeks ago, I started having a flare-up.  I guess it was about that time.  I haven't had one since I was diagnosed and it's been about two years.  I was hoping to be one of those few to go fifteen years between flare-ups, but that really was an optimistic hope.

It started at work. I realized that by the time I got to my breaks, my legs were exhausted and almost completely numb.  Within a couple of days I noticed that they didn't want to support me anymore once they were numb.  Then I realized that the time it was taking for my legs to tire out was shortening each day.  I said something to my husband, and my boss, then I tried to get a last minute appointment with my neurologist (who I found out, was on vacation). Life has just been racing downhill since then.

When I told my boss that I could no longer work freight, because I couldn't be on my feet for those lengths, they actually made me take a leave of absence.  The company wasn't unwilling to work with me, but they were unwilling to take chances with my medical needs.  They asked me to see my doctor and get a list of questions answered regarding what exactly I could and could not do, as well as what accommodations I should be given. Until then I have some unused sick time and if necessary, disability pay.  It has taken some time, waiting for appointments to become available, participating in new diagnostic procedures and treatments, then ultimately deciding what answers to put down.  I have, however, been cleared medically to return to work with a few restrictions, so now I just need to wait for the employee relations liaison to get in touch. I've only been waiting one day, but I am impatient to return.

I got in to see my neurologist on his first day back from vacation, which was four days after leaving work.  He ordered a new MRI of my brain and brain stem, with and without contrast.  That's such a common procedure for me this last couple of years that I can actually nap in the MRI machine.  He also ordered a three day round of infusion steroids in hopes of shortening the flare-up duration.

During the Infusion

I hated the steroids.  Getting the infusion wasn't bad.  The nurses were empathetic and gentle.  They went out of their way to make me comfortable.  Aside from the tube sticking out of my arm, I could have been at a spa, plenty of warm blankets and fresh juice for all.  They even left the IV in so that I didn't have to get poked by another needle when I came back the next day.  But the drugs themselves, made my mouth taste terrible, the taste didn't go away before I had to start my next infusion and the headache, seriously, the headache.  I have no words to describe how that one felt.  I just know that I never want to feel it again.  The nurses started to run saline with the steroids to take the edge off the headache, and it did take the edge off, but there was no fighting it completely. For the first couple of days, my symptoms continued to get worse at the same rate.  But they have plateaued and I am stoked.  This level of restricted walking I can work with, and I will until I start to get better again.

The IV All Wrapped Up