I was diagnosed with relapsing-remitting Multiple Sclerosis in December 2008. This is my blog about my life living with the roller-coaster world of MS with a little humor and advice thrown in!

Thursday, September 27, 2012

Getting your mind off MS and more on You

Well, you would think with all my laying around after falling a week ago I could post something!   Nah,  Seems I spent the week reading, watching tv and  well, nothing.   The nice part about it was having all that pain in my rear (literally) kept my mind off my dear friend MS.   Actually quite nice not noticing the numbness, fatigue and other little MS reminders this week.   My focus was keeping my poor back and bottom in a comfy position which is harder than I realized!   Rolling over every night in bed guaranteed a nice ouchie wake up. 

Looking back over the last week I realize again, for me that having something else to deal with can help your mind stay occupied on other things.   Now, I know that's just for the little MS reminders. (That's what my Neuro told me a couple of weeks he calls them)   When the biggies happen there is no ignoring them.   But, I have decided on days when I don't work and am feeling good to make good use of that time.  I have charted out a list of projects from painting a bathroom to cleaning my teenagers closets (gahhhh).  There are always something to do and I have decided to not make excuses and do them. (fun or not) 

Holidays are around the corner and it's always fun to spruce up your home inside or out with some holiday spirit.  I'm a Halloween nut so I am all about spooky and spiderwebs!
Keep going and try to avoid that "I have MS" rut.   I know it first hand.  Even on decent days sometimes it can bring you down.   My goal is that when people see me I am cheerful, smiling and with my known sarcastic wit.    As you all know when an MS flare up rears it's ugly head it's hard to keep that cheery demeanor.  But, when you can do it!  Always!!!   

Well, reading all this sounds kind of chipper and annoying for me but it's true.   I hope everyone has a fabulous week!  

Thursday, September 20, 2012

BG-12, Not so graceful moments

Ok,  for all my MS research, blogs and communities how come I just learned about the new oral drug BG-12????    Have I been under a rock?   My Mom txt'd me this morning and saw it on Headline News.   Seriously?    While this whole week I have been debating between losing my hair with Terflunomide or having my heart slow down and stop with Gilenya there has been BG-12 on the horizon?   After googling everything I  can about it, the low side effects and potential disease slowing results sound fabulous to me.     Wow,  it sounds like the wonder drug of MS.   Think I will gladly wait a couple more months off Copaxone to try it.   :) 

So, I'm not the most graceful gal in the world.  I slipped on my patio steps a couple of nights ago and went boom.  A sprained wrist, bruised back, severely bruised bottom (I swear, I had no idea a bottom could bruise so bad!) and various other aches and pains has left me pretty much couch/bed ridden.  Sitting in a chair is barely tolerable.   Of course, my issue is I don't want to go out in public and have friends think it's an MS thing.   We MS'ers actually do and can have accidents and mishaps that aren't MS related.  But, when you have people looking at you under the MS microscope it's hard to convince them (in my case)  that is wasn't a balance issue.   lol   It's actually easier to blame MS than to admit what a klutz I am.

Saturday, September 15, 2012

Decisions, Decisions

Well,  the FDA approved MS modifying drug Teriflunomide (Aubagio) which is one my neurologist wants me to consider next to Gilenya.   Hmmmmm, decisions, decisions.   I am thrilled to get off injections but there is much to research as far as side effects with these two oral disease modyfying MS drugs. 

My top concerns are the heart slowing effects of Teriflunomide.  You have to monitered for 6 hours upon taking the first dose.   And then you have to be monitered monthly with blood work.   Hmmmm

Gilenya has a side effect of hair loss.   As a woman that can be a crucial choice.  It's not like I have thick locks falling to my waist but I'm used to what I have and don't want any less of it....

And after reading up on both meds their side effects are actually quite similar.   I didn't experience these type of side effects with Copaxone Injections.   So it looks like I have another decision to make.  Gahhhh  I hate that!

Luckily it is the weekend and again like Scarlett, "Ill think about it another day"

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Wednesday, September 12, 2012

MRI Results,,..Finally! Teriflunomide or Gilenya?

Continuation from last week........

Drove back to Nashville today for MRI results.  Finally!  That pesky disc was burning a hole in my purse!!!!   Well,  bad news first,  I have more lesions.  I had 7 two years ago and today he told me there were "many more than 7".  Good news is that none were active.   Dr. feels like the Copaxone that I took for 3 and a half years was doing it's job.  Yay!!    But, since I had to get off of it in May due to injection side effects  (don't ask! not a good time!)    he is giving me the choice between Teriflunomide and Gilenya (if anyone knows how to pronounce that last one clue me in)   So Yay!   An oral med!!

So now I have to look at side effects and effectiveness of these 2 drugs and decide.  My Dr. did say one causes hair loss.  hair loss???  Jeez, I don't have enough as it is!  Hmmmmm, gonna have to research these for a couple of weeks.  

For anyone who has MS or knows someone with MS I can't stress enough on the danger of infections.   Danger meaning an infection can cause an exacerbation.   So, try and keep yourself healthy!  Exercise!  Rest when your body says to!

Saturday, September 8, 2012


So it's that time of year.  The dreaded annual MRI.  This will determine for me if I will be ditzy and loopy and unsteady  for the next year or if Copaxone has put a damper on any new lesions.   It could go either way.
My husband says who can tell??  "Your loopy and ditzy anyway"     True.   It's nice to have an option like a disease to blame it on!  

My neurologist is fabulous.  We love him so we drive 2 hours bi-yearly for my visits.   This visit includes the MRI so off we go at 6am.     Arrive on time (yay)  and walk into a freakishly cold yet humid waiting room.  Bizarre.  After filling out my forms there was a wet film on my skin.    Ugh.  And my Dr. appt hairdo (you know what I mean)  is toast.   I have been to this facility before and usually the experience is friendly and speedy.   Hmmmm not today.   After a 30 minute wait I get called back.   After another 30 minute wait I finally get in MRI machine.  All the while I keep mentioning I have a Dr appt shortly.  

Did I mention my non friendly nurse/tech person????   I hop onto the FREEZING table and have to ask for a blanket.  (usually a warmed one is waiting for you)    With very little talking I am strapped in and off we go for 20 minutes of clanking, boinging, annoying noises.    I'm then pulled out to get dye injection.   Here's  where the fun begins.    The nurse person asks which arm is better???    Um, I've had both used so I would prefer a professional answer that one.     After using the rubber band tourniquet from hell (which has grabbed every hair on my arm)  Jab number 1.   "Oops, nothing there"   Seriously?  Felt like she was going for bone marrow.  Then the slapping begins. Not gently taps to get a vein up but an all out girl slap on both arms and both hands.  She slapped my hand so hard my back arched up off table and she asked "does your back hurt"?    No, but you slapping the shit out of the top of my hand does.    (All in my head of course)   Jab number 2   "I think I got it"

After all that  ( I have the bruises on my hands to prove it)   My Dr. called and said we would have to reschedule because he had a flight somewhere .   Freaking great.   Another drive to Nashville next week all due to the Imaging place.   Oh, well.  Do I really want to know what's on that disk in my purse???    YES!!! 

Update on this next week :)