Feeling Normal

After my pseudo flare up with old lesions this summer I had an epiphany.   If I can handle a fakey flare up (which felt quite real)  then why am I so worried about a real one.  At least right now when I don't need to.   So, for the past several months I have decided to ignore my MS.   I was mad.  If I felt that crummy with a fake flare which lasted quite a while then I must feel fantastic when I don't have a fake flare.  Make sense???  Well, at the time it did.  I didn't post on my MS blogs, sites etc.   Any twinge I had I chalked up to getting older.  Yes, I still took my meds but that's the only time I thought about MS.. And let me tell you for me it's been liberating.  No more walking on eggshells wondering what this and that is.  I have been living my life fully.  If I want to nap all day then so be it.  I do it.  If I excercise 5 days a week and feel crummy on the 6th well so do alot of other people.

Now I'm not endorsing this kind of behavior for everyone but for my mental frame of mind it has done wonders for my life.  All aspects of my life!  Even my husband is a little leery!  Haha  I chase him around like the old days.   I laugh all day long at my teen boys.  If I trip or knock something over it's like "jeez Mom your such a clutz"!

I know it won't last forever but for now It has given me such joy to be "normal"

Flare Up with Old Lesions

I thought the title sounded kind of sexy! 

 But, my flare-up that started 9 weeks ago is not :(

So, in all my knowledge of MS I did not realize that a flare up could be from an old lesion.  I love it when I learn something new about MS.  Kind of.

9 weeks ago I had shingles.  Again.  4th time.  On my butt.   And a bad cold.   Fun. (actually hellish) When those two things started dying down I realized my right side was extremely weak.  Then come the tingles.  (luckily mine aren't uncomfortable. I've heard some are)  Now the tripping starts. And my pals fatigue and cog fog to the extreme.   Surprisingly it takes me a couple of weeks to put it all together.  After a fall getting out of the dentist chair (embarrassing)  it dawned on me.  Could this be a flare-up?   (nobody said I was the brightest bulb)

 An MRI and a visit to my neurologist who tells me it is a flare-up but the good news is that it is a flare-up from an old lesion.  Which she believes was triggered by the shingles or cold or both.  That is why I'm so paranoid when I get a cold or bug.  

Apparently old symptoms and flares from an old lesion are common.  What we don't want is a exacerbation of a new lesion.  That would mean progression. 


And since I've had these symptoms before it has been easy to deal with. 

So, don't panic over a flare-up.  It could be a flare from an old flame.....

MS Awareness Week March 2-8

Well,  it's that time again!!  National MS Awareness Week March 2-8.   For those who have been in a snow bound state it's time to get our MS brains going again!    Let others know via voice, social media, and general communicating what MS is.  What MS means to you.  How are you tied in with MS.  Trust me those openers will generate questions.  And the more questions the better!!   We (MS Community) are so much closer to a cure than ever.  Our MS meds now are doing a fantastic job of staving off or shortening some of our worst flair ups. (exacerbation's)

But, there is more work to be done.  More funding required.  So as MS'ers it is out duty to get the word out.  Make Multiple Sclerosis heard.


Have a Fantastic Week!

Teresa H

New Year

There is nothing more promising as a New Year.  It's like a chance to throw away the old and start fresh   I love closing out old files and finishing up last years insurance stuff (MS'ers have a lot of that!) and scrubbing my house top to bottom in anticipation of the new year.  For me it's a purge of sorts.

Now, I don't mean I make a bunch of New Year's resolutions.  Or that I'm going to change my ways dramatically.  I'm realistic in the fact that I may just want to tweak a few things here and there.  Smaller  things are so much easier to accomplish than taking a huge leap and saying something crazy like "I'm going to lose 100 lbs and stop drinking and stop smoking".  (just an example)

This time of year marks my 6th anniversary of being diagnosed with MS.  6 years ago I was very very sick.  I was in and out of the hospital for a month.  I couldn't see well.  My left side was completely numb from my face to my foot.  I couldn't even write my name.  The anxiety and cognitive issues from the flare up (that phrase sounds so lame compared to how it felt)  made me barely able to communicate. My weight dropped quickly actually too quickly to 107 lbs.   My face drooped and I slurred like a stroke victim.  I was physically and mentally unwell.

6 years later I am now at a comfortable point with my MS.  I know I won't die anytime soon from it.  I know how to read the signals and signs my body gives me and I take action accordingly.  I religiously take my disease modifying med Tecfidera as prescribed.  I exercise at least 4 times a week to keep my muscles from drawing up and killing me!  

I keep my stress down as much as possible by taking medication, attending therapy and going to yoga.

So my goal this year is doing the same but a  little more of.  That's a reasonable goal for me.

So, with all that being said.  Take small steps and you can accomplish whatever your heart desires  :)

Time Flies

It's been a while since I've posted I know!!  As I've mentioned in the past  I volunteer as an MS peer with National MS Society (basically, I just listen and help people get through their first year of diagnosis with support and my own experiences)  and I had a new MS patient that was assigned to me.  After a few chats she was thoroughly disgusted with her quality of care and lack of knowledge about MS.  I'm sure my vague answers about my experiences didn't help.

As most of us MS'ers who have had Multiple Sclerosis for a while we now KNOW

what a gray area (pun intended!) MS is.   There are so many variations of symptoms and everyone is different blah blah blah.  Well, this particular subject was frustrated not know what to expect and was scared (we've all been there) of the unknown future.  And proceeded to tell me that "thanks for trying to help, but I'm opting out of the MS community"

I was stunned.   Opt out??  Was that an option???  Nobody told me about that one. Where the hell was the check box for that one?????

 Well these last few months have been kind of crummy with my personal MS experience.   I've had a small exacerbation with eye pain, dizziness, numbness and pain.  Small in the sense it's still going on after a month  but has gotten no worse like I've had in the past and is tolerable.  Yay! Lucky me.......

I haven't felt like posting on my blog because of me feeling yucky and the last thing you want to do when your having MS symptoms are talk about them.  At least for me. Plus, my son was coming in from overseas in the Navy and would be home finally after 3 years. And,  my other 2 teenage boys had all kinds of things going on.  It has taken all I've got to act "normal" and conserve my energy so I could keep up.  I had a lot going on and it dawned on me.  I wanted to "opt out" of MS too.   At least for a while.  So I did.   Sure, I had daily reminders that I have it but I had enough to keep me distracted.

So I get it.  Everyone is entitled to "opt out" for a while if they feel like it. Doesn't make you a weak person.   Sometimes we just have to concentrate on ourselves.  

So here are some examples of me "opting out" since I've last posted.                I hope you enjoy!

Bring on The Heat Meat

Happy Summer!   I hope everyone is having a fantastic summer!!!   And for all you MS'ers I hope your staying a cool!  

This summer has been just the opposite for me as far as summers go.  My summers normally consisted of lounging by the pool, swimming and going to each and everyone of my son's baseball games including all local games and also as many Atlanta Braves games as I can.  Hot?  You bet. Muggy Tennessee heat.   But unlike most MS'ers heat didn't bother me it was the cold that did me in.

So every summer my motto was "bring on the heat Meat" (classic Bull Durham line)   

And then like most things that change I started noticing my leg going slowly numb when I was out at pool.  Then my arm.   Once I was inside it SLOWLY resolved itself. Always right at that 48 hour mark before I freak out and think it's a flare up. Then if I did  a full day of outdoor fun or yard work I slowly realized a long day outside in the heat meant a few days down( really down) later on.

So, this year I consciously stayed in more.  Interestingly enough I didn't have as many symptom issues.  And I'm pretty pale.   Hahah  A little vanity.

My husband has taken over yard work.  Very graciously I might add.  The way he was acting I thought I was dying or something for a week or two!

So, just another slap in the face that things can change. Or have to change for health's sake.     And that's ok.  

Going to Disney at night instead of during the day.  Kind of cool. 












https://www.youtube.com/watch?v=ZaLdrVWDdQU

Twitter Away

Wow!  I had no idea I would have such  terrific response from my last post.  Who knew just talking about Twitter would generate such interest.

I have had people email me and say that they have newly discovered Twitter as well.  And that they have been amazed at  all of the MS followers that can be found on it.  

Really broadens your circles huh?! 

Since then I have tried to keep up with all of the MS people and sites that are on Twitter.  Almost impossible there are so many!!  It's wonderful that we aren't as alone as we may feel sometimes right?!

So, Twitter away!  Let our MS voices be heard and make new friends along the way.  :)

Twitter

So I've been fooling around with Twitter.  By "fooling around" I mean actually learning how to use it!  I've had a Twitter account for a year or two personally but not a specific account concerning my MS.  Recently I have discovered there are an amazing number of Twitter users with MS.  And they are just as interested in you as you are of them.  Refreshing!

For those who like to post updates on their MS progress or for MS advocates Twitter is an amazing tool.  At times it is nice to know there are so many other people out there who are experiencing symptoms right along with you.  

If you don't have Twitter try it.   I guarantee it will make you feel not so alone.....

You can find me on Twitter @myfablifewithms  

Hope your week is fabulous!

Teresa

Show Your Love

I read an interesting blog the other day that really stuck with me for some reason.  This daughter was shocked to discover upon her Mother's death that she (her Mom) had MS.   The mother hid it from her husband and children for many years so as not to be a burden.....

The daughter was hurt because she grew up thinking that her Mom was cold and distant.  Apparently the mom thought that she was doing everyone a favor by not doing things with the family that she wasn't physically capable of doing. Or not explaining why she couldn't.

Wow.  I guess I understand? No, not really.  I for one could never do that.  My family has given me the support, courage and drive to do everything that I am capable of doing right now.  

We don't talk much about my MS at home.  We all know it's there. No biggie. Taking care of my family and wanting to do as much possible with them makes me take care of myself. Reserving my energy when needed so I am able to keep up with them is important.  Sometimes I forget that but crazy enough someone else around me does and reminds me.  Just the same as I do for them.  Which I think is pretty cool. 

We are a family.  We take care of each other.  That's what families do. If your loved ones don't know what's going on with you how can they understand you?  And vice versa.

I would hate to think that one of my boys thought I didn't love them very much just because I let my MS dictate my life and they weren't aware of it.

Everyone handles things differently I guess.  I understand what that mom was trying to do, but my opinion is don't let MS or any disease keep you from letting those around just know how much they are loved.  

Vertigo Fun

Yay.  It seems that I have a nasty touch of the dreaded vertigo.  For 2 days I have felt like a pinball in my home banging from doorway to doorway down the halls.   For those who don't understand my lame example of vertigo here is the technical description:

Dizziness is a common symptom of MS. People with MS may feel off balance or lightheaded. Much less often, they have the sensation that they or their surroundings are spinning -- a condition known as vertigo.

These symptoms are due to lesions—damaged areas—in the complex pathways that coordinate visual, spatial, and other input to the brain needed to produce and maintain equilibrium.

It is one of my least favorite MS symptoms.  Just because it makes me queasy and hard to walk and get things done.  Usually I have to lay around until it passes which a) drives me crazy doing nothing and b) it is a direct slap in the face that something is wrong with me and not as ignorable as other MS symptoms.

Well, on the bright side this should give me time to finish up some of my Netflix series I've gotten hooked on this winter.   Breaking Bad or Revenge anyone??!

See, I try to always have a back up plan or a bright side for everything MS throws my way.  That way I win.  

Winter Time Blues

Ugghhh,   those winter time blues.  You know what I'm talking about.   Cold days, stiff muscles, stuck indoors etc..... 

My least favorite season.   After a month of wallering (that is really a word here in the south)  in my pitiful depressing state I pulled myself up.  I started exercising more at home in addition to the classes I take outside home.  I also started a journal.   Which sounds so old fashioned in this day.  But start one I did.  Believe it or not my secondary neurologist suggested it.  Once I got the hang of writing "my feelings" about anything I want it got easier.  Kind of like blogging but with more details and honesty!!

I even (gasp) started back on anti-depressants.   I know that's a touchy taboo subject to throw "out there" where anyone could find out that me or anyone else is not perfect.

I've been on them a couple of times since being diagnosed with MS.  And I thought that once I got a handle emotionally and physically on my disease I wouldn't need them.  

Wrong.   On both counts.  For me at least.  I have come to terms that you can never have a handle on MS.  You can cope and move on but that's about it.  

Emotionally is another story.  There are so many factors that contribute to you emotional well being and having MS. It's not just you that makes your emotions scatter daily.  It's MS.   I won't bore you with the dry facts and diagrams.  I won't waste your time or mine today talking about lesions and myelin sheaths etc.   We can do that another time.  

Bottom line for me.  I take an anti-depressant/anxiety med so I can live my life and not worry so much about the little things. Because worrying around the clock takes a toll.  It's exhausting.  And I'm not ashamed to admit it.  

Overused quote I know but Life Is Too Short

And because I've accepted this and am back on meds I'm able to do this!!

Never Ending Cold Part 2

Ok,  so my "common" cold from last post turned into the cold/virus/flu whatever that lasted oh about 3 weeks.  For my husband as well.   So, I couldn't get the holidays over fast enough.  And of course after 2 weeks I start to panic thinking of all the stories of people with the flu dying or it turning into something worse. And the ever present fear of a virus turning into a full blown MS flare up.  Yeah,  good times.

But, now it's finally gone except for a few lingering coughs.  And of course it has turned super cold here in the south.  I already looked like a bag lady for weeks and the look will apparently continue until April......  

Still, the good news is that I have felt "MS great".   I have had Tecfidera flushing more frequently which is annoying but tolerable.   I do hate waking up at all hours with my face feeling like a bad sunburn.  Creepy.

I hope all is well for everyone.  And no I made no New Year resolutions.  Silly.  

Stay warm.

MS vs The Common Cold

I have been feeling amazing lately.  Physically.  Yeah, you heard me.  No fatigue fog (sucks, sucks, sucks) No cognitive issues.  (well, no more than my normal ditzy self) No bad numbness creeping down the side of my body and sending me into a panic attack (hate those)

Nothing.  Except a common cold.   Seriously???   I feel great and you throw me a freakin cold????   I don't have time for that shit.  I really don't.   And it's the first day of winter break.  A day I love.  The high fiving with the teen boyos when I pick them up from exams.  The dramatic turning off the alarm for next 3 weeks ritual.   Watching old Christmas movies. Drinking hot cocoa.  Not getting dressed......   You get my picture.

It's rather humorous.   You throw me MS.  Give me symptoms and issues all the time at the drop of a hat.  Then out of the blue you make me feel great.  And boom the next morning you give me a cold.    

The ugly red nose, snuffling, Vicks Vapor Rub smelling kind of cold. 

But,  I still feel better than MS makes me.  So take that MS.   :)

Always Have Sweat Pants

Isn't it nice when you have a great week?  You feel good. The future looks good etc.   That has been my week and I hope it keeps on going.  

I don't know about everyone else but December is always a busy month.  Having kids means December explodes with events, parties, exams, practices. You name it.   My days are spent driving, dropping off and picking up.  My gas is already double than normal months.  

And you know what?  I love it.  Wouldn't trade it. EVER.   Even when I blew up because both of my teens was running in a 5k Saturday morning and youngest zombie  realized he had no sweat pants. None. Nothing even close.  That morning.  30 minutes before we had to be there. And it was 20 degrees outside. (I really don't know if that's accurate but, it was freakin cold)   Seriously??  How could he (I) miss that???   

Who the hell doesn't have a pair of sweats laying around???   And he's the youngest.  He should have 10 years worth of hand me downs from 2 brothers.

I offered a pair of my warmest yoga pants.  Crap, their black no one will notice I said.  You would have thought I was asking him to wear my panties the way he reacted.

So, I jumped in my car and verbally blistered both boys about responsibility, thinking ahead, I'm not going to always be able to come to the last minute rescue....(yeah, right)

 blah blah blah and drove to corner drugstore.  They have crappy sweat pants all freakin year except Saturday.

Onward to Wal-Mart.  I'm really on a roll by then.  

Pay $20 for a pair of sweatpants.  Told youngest they were a Christmas gift and don't expect anything else.   (Hey, they all know without enough coffee I will turn into psycho  Mom)

Later this week an acquaintance told me she was thrilled to see my boys at the run and how nice and polite they were and so helpful and how much $$ was raised........

Made me feel like an asshole Mom. Teen boys don't think ahead. Maybe it was my fault for not checking his closet.   So, maybe I should back it up and get him the matching sweatshirt for Christmas.........

Change In Climate

I don't know what it is about traveling north for the holidays.  I'm not sure if it's the effing cold (15 degrees the morning we left)  or the super darkness.  But, all I wanted to do over Thanksgiving was stay in my toasty hotel room and stay under the covers.

Depression was my best friend this week.   Maybe it was a combination of my frozen, stiff muscles or that I was at my husband's family.  I haven't been in a number of years and I don't see me going again any time soon.  The spasticity and stiffness in my leg muscles was so bad that I got in the hotel hot tub.  Something I never ever do.  (I think all those foaming bubbles are harboring nasty bacteria or some kind of social diseases).  

Now that I'm home to 50 & 60 degree weather I'm back to normal.  Go figure.

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.  :)