I am so tired of feeling bad. I’m incredibly fatigued in general. My legs are heavy – it’s tough to move around as much as I would like to. I’m limping on the left if I move around a lot. My right eye is bothering me again. My left arm is dis-coordinated. I’m having a bit of trouble finding words. This is so incredibly frustrating!
Although today is better than yesterday and the day before and the day before, so it goes to show you how bad things have been since last Friday.
Please let Monday come soon, and pray that Gilenya works for me! I need some stability in my life and stability with this disease!
Those are the two things my neurologist said I must do to try and stop this downward spiral that started in December 2009.
Kinda difficult when you work full-time as an inpatient physical therapist, around ill people most of the day, and you have two young children in 1st grade and daycare that bring home every bug known to man.
Right now I am sick. Like, I have a cold, sick. Feel like a truck ran over me, sick. This stresses me out because I always have an MS flair when I get sick. And there’s my one-two punch. Sickness, one; stress, two. Thus, it’s no wonder that it’s tough to type this post as my left arm isn’t playing nice and my right eye is blurring out my computer screen. I am also limping my way around my house trying to deny the fact that I should just sit my ass down. Just fabulous! *insert oozing sarcasm* One ironically good thing is that I’ve been off work since yesterday because it’s my 7 year wedding anniversary tomorrow. I was supposed to have these few days off to celebrate. Yay, happy anniversary to me… *again with the sarcasm* …my husband will be so thrilled when I give him his present of a hospital-grade cold. So anyway, I have until next Wednesday to feel better before I must return to work.
But more importantly, I am awaiting a couple of things, which is why it is imperative for me to get better and avoid going on steroids for an MS flair:
1. I have an MRI scheduled for Sept. 26th – won’t be able to have it if I have a flair and end up on steroids.
2. I am supposed to start the oral medication Gilenya on Oct. 3rd – won’t be able to do that either if I have to go on steroids.
So, this is where we hope and cross our fingers that I do NOT have an MS flair from being sick, so that everything can go as planned. I really need to start this medication – my optic neuritis (meaning the blurring in my eyes) and old symptoms flair up too often for me to not be on medications. I am still doing better than I was before my CCSVI procedure, but I need to do more as I believe this disease that I have is multifactorial in nature – partially vascular and partially immune system related.
I really need to de-stress. I really need to get well. I really need to get my life back.
This is my second time starting LDN. I had to stop LDN last July because I was getting pounded with steroids due to the frequency and relentlessness of my relapses last year, every MRI showed a very active disease process.
I was on Copaxone at the time (which obviously was doing nothing to slow my relapses) and my relapses were one right after the other and then I was switched to Avonex. I was in such a funk.
But now, being liberated Life is so much more colorful! And I feel now is the time to get the benefits of LDN again.
1.5mg LDN taken tonight – now going to bed… goodnight!