Super Hero MS Vision?

What is with my MS vision lately???    Although that sounds rather Super Hero-ish I don't think it is.  I went early today to do some grocery/Christmas shopping at Sam's and Wal-mart.  When I walked in to both stores the brightness or something about the lights almost dropped me to my knees.

Am I a vampire??  no, that's the sun.   Is the bright fluorescent lighting messing with my head??  Maybe all the wide-open space? 

Whatever it is when I go to those stores of that type my vision gets rather swirly and I just want to cover my eyes.  Throw in some vertigo and instant panic and my shopping mood comes to a halt.   

Maybe it's not MS.  Maybe it's just me. Maybe I have some kind of allergy to discount shopping.  

If anyone else with MS has this issue then whew!  I feel better.  I would google this symptom but I'm not a fan of all thousands of other ailments it might say I have!!

My Target Military Meltdown

After my teen fool incident yesterday (yes, he came home and apologized and found his Star Wars pen in the bushes.. see last post)  I felt some retail therapy was in order.  Maybe some some special Christmas gifts for the teen fool.  Lol.   I can't stay mad at them long.  They are so darn funny and cute!

I needed to mail my Christmas gifts to my sweet oldest baby boy overseas. He's in the Navy and if I don't send it this week he won't get it til February. (Lesson learned the hard way last year)  I wanted to pick up one more thing. Maybe something Christmasy.


Well, there I am in Target when I am struck by the Christmas spirit in the form of a glittery snowball.  That played music!!  That had a little 2013 stamped into the base!  That suddenly reminded me that my Navy baby will not be back home until next July just briefly.   Yes. I will get this for him.  So he will hear a little Christmas tune and think of cold weather and snow. And maybe he will think of his family and especially his Mom who cries every week and misses him so much and OMG I have lost it completely in Target.  In the Christmas Dept.  

I haven't heard his sweet voice in months.   We have been able to email about once every two weeks and that's it. 

To everyone who witnessed the crazy blonde clutching two snow globes while crying and pretending she wasn't.   Who was wiping the snot on her sleeve because she didn't have any tissues on her. I am sorry for my messy display.

And to all my fellow Military Moms out there, Thank you for understanding.  It sucks.

Teen Fools

Teen Fool

Let me start by saying I love my teens.  Surprisingly they don't drive me crazy.  Yet.   I've been on guard waiting, watching for them to turn into teen fools. You know, belligerent, forgetful, obnoxious, smelly etc. ie. Fools.   My oldest did that somewhat so I am prepared.

My 14& 15 are either delayed in that department or heaven forbid not going to become teen fools.......HaHa   That's a good one.  I'm delusional.  Of course they will.  It's just a matter of time.

My 15 year old didn't want to turn in Dr. note this morning from being sick yesterday.  To me it's a $110 piece of paper saying he didn't feel good yesterday so don't turn us in to the truancy dept.....

  Why didn't he want to turn it in?   Good question.  Who the hell knows.  He said he'd do it Monday.  Nope, I said "you'll do it today and then you won't have to worry about it". 

He got pissed and slammed out the door.  Threw his new cereal box toy pen in the bushes. (who knew that teens still love those cheap toys in cereal??) 

Now he's texting me saying he doesn't know why it was a big deal (it wasn't. He made it a big deal.)  And that maybe he shouldn't go on overnight camping trip tonight.  His attempt at reverse psychology?  Silly boy.  I've got years of that ahead of him.   What a twit.  I think I'll call his bluff on that one.  That will make him think a little and maybe just maybe the almighty Mom is a tad on to him.  



Hmmmmm.  I don't have girls so I'm putting this one in the "Drama" category.

Or better yet Let The TEEN FOOL games begin..........

Cold Snap

I just came home from sunny warm Florida this weekend to an unexpected cold snap in the old Tennessee Valley.   Brrrrrr.  Not a fan.

I know heat aggravates most MS'ers but cold weather is my personal nemesis. It makes my muscles tighten and makes my body hurt.  Like brittle snap hurt.

So, fall/winter are not my fav seasons physically.  Luckily with my shiny new attitude this week (I'm sure will be gone by Friday)  I am taking a couple of hot yoga classes which really make my muscles smile and then it's couch/resty time (curse you fatigue) with my favorite heating blanket and Netflix.

I know this is only the beginning of cold weather but I will do everything not to let it touch me.  And if I look like a layered bag lady then so be it.            

After my diagnosis 5 years ago  MS has been a re-learning of my own body. MY body. My own body that I knew so well.  And now I don't.  

But that's ok.  I'm getting the hang of the "new" me.  I don't try and push through the pain, fatigue, numbness.  It will only bite me in the ass and put me in bed for days.   I store up my energy.  Use it when it is most important.

Pain In My Neck

  Does anyone have that one MS symptom that keeps coming back over and over that sends you over the edge??  This week for me it is the pain (literally) that starts in my neck and radiates up the side of my face to my cheek and down my left arm to the tip of my thumb.   And while most symptoms are annoying to me this one absolutely kills me.   It's a burning, stinging pain in the neck with numbness and shock waves that go to my hand.   Such a pain.   I never know if ice or heat is better.  Heat feels better but who knows which is better.

Wrapping my hand with a elastic bandage feels good too.  Since my arm and hand are numb they feel cold.  And the compression helps with the tingling and jarring shock waves. 

Well, that's my whining for the week.  :)

Just Be Nice

My boys school has a new slogan called Just Be Nice.  JBN is posted everywhere.   I think it's one of the better slogans in life to teach and pass on to our kids.  In fact,  I felt like I should incorporate some JBN in my life. 

Does it seem like everytime you turn around someone is telling you about their sister-in-law just got diagnosed with MS. Or someone thinks they have MS and corners you with all their symptoms to see what you think.  Does every 3rd person have MS now???   Or think they do???

As a peer for the National MS Society I actually get a lot of emails from people who think they have MS.  I understand if you have scary ailments and the internet suggests MS.  But please go see a Dr and get a firm diagnosis of what you have.  Don't try and diagnose your self. 

Who on earth would want to go through the stress and anxiety of NOT KNOWING what is wrong with them.   I know testing can take a while and their are A LOT of diseases and problems out there.  

Getting a firm MS diagnosis can give you the determination to start taking disease modifying meds and taking care of your self while moving forward.

With so many people asking me if I think they have MS or someone they know maybe has it I have really had to pull out my Just Be Nice card.   

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.  

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

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...............

  

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!!