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.