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!

Wednesday, September 25, 2013

Fall. Love It or Leave It

Ahhh,  Fall is in the air.  Well, for us in the South that means the temps are starting to dip below 85.  And a nippy 65 at night.  Brrrrr  Not a cool weather kinda Gal.

Fall to me signifies the season changing and for some of us with MS that is an apprehensive time of year.  Weather and temp changes mess with my head.
The coolness makes numb areas hurt and the brightness outside is different and makes my vision squirrley.    (Not a medical term to be sure)

And my biggest baddest MS flare-up was in the fall (and well into winter) so it makes me a little nervous.  Psychological?   Probably.  

Tuesday, September 17, 2013

A Cold or a Zombie?

The Voodoo got me.  Remember I was just talking about trying to stay germ/sick free??   Well, Friday I get the crud.   You know, the crud.  You don't know whether to call it a cold, sinus issues, flu etc.   It's the "I feel crummy and need a personal nurse" crud.

Tissues surround me.  My perfume of the week is Vicks Mentholatum rub.
Sleeping off and on all day and night.  Freezing then sweating.  Stuffed up nose which immediately starts running just to stuff up again.  Laying down. Getting up then just laying down again.  That's me.

I'm a horrible sick person.  I'm miserable. And I'm sure that I feel worse than anyone else could ever.  (kind of like a man...)

Add in some daytime no-drowsy that wear off after 2 hours and I'm pretty sure I resemble a zombie.  A not showered, icky, hideous looking zombie.

And, (I'm whispering this)  this had better not trigger a flare up.  Shhhhhhhhh

Sunday, September 8, 2013

MS Voodoo

Do you tend to be cautious or superstitious about doing anything that seems similar to what your were doing when you had your last big "flare up"?

Case in point.  I've been asking (nagging) my husband to go on a cruise.  He finally told me the reason he keeps saying no.  He said "don't you remember the last cruise?"   Yeah, I remember having a pretty good time. At least on the ship.   He just looks at me as if I have 3 heads.   He said "we got off the ship and on the drive home you started feeling sick.Fever, chills, severe headache etc.  Within a few days you had numbness in your face that traveled over the next few days down the entire left side of your body." 

Oh yeah.  I remember now.  I tend to shut out that chunk of time...  

That was October 2008.  By December 2008 I was diagnosed with MS.

It scared me and totally terrified my husband.  We were living in a new town. Had 3 boys at new schools.  No friends or family around.    

So I guess I'm banned from cruises the rest of my life.   But, then I started thinking of all the small things I do or avoid because I'm scared it will stir up the MS pot.

I'm worried about germs.  I know that a little bug or virus can get an exacerbation started.  I'm constantly washing my hands and using hand gel.   I work with kids so I'm extremely paranoid.  And I won't babysit  my niece's and nephews if their sick.

If I get too tired and shaky I panic a little.  If I can I lay down immediately until it gets better. 

Ever since that big bad attack I have anxiety attacks.  Big ones, little ones you name it.  I have spent 5 years trying to make rhyme or reason of them.   They come an go with such randomness their hard to keep up with.  I guess I'm stuck with that part forever.   Most of the time they hit me when I'm feeling no anxiety what so ever.  But I work hard to keep stress to a minimum.  Hopefully that helps.  It's like some wires are messed up in my brain or something.   Um, yup there actually are.

Cold weather does a bad number on my body.  I know heat is usually the culprit for MS'rs but my nemesis is the cold.  It makes my body hurt so bad that I think my bones are going to break. And the winter glare messes with my vision.  I spent quite a bit of time in and out of hospitals in the winter time while the Dr's tried to get my MS under control.  So I try to stay out of the cold.

So I catch myself from staying away from the "bad things" that in my warped little lesion filled head might make me "MS sick".

Is that like OCD???  Hopefully I don't start counting the times I turn a door knob to ward of MS...............


Wednesday, September 4, 2013

Tecfidera Side Effects

I've been on Tecfidera a few months now and I can honestly say the side effects are by far better than Copaxone was.  Of course, Tecfidera being oral is the number one plus.  No more shots, injection site lumps, pain, burning etc...

My only side effects have been flushing.  Where my face gets red and hot and feels like a sunburn.  And itching.  Only on my hands and forearms.  And they always come at the same time.  Early in the morning.   But only a few times a week.  No Biggie.  I can handle this.  Now, cross my fingers it works!!