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!

Saturday, August 31, 2013

Read a Book Why Don't Ya

After my last few rants I feel cleansed.   That's the beauty of blogging for me.  Let it all out and I feel like I just took a yoga class and got a massage.  Beats therapy or counseling any day. (trust me) 

I have felt great these last few days. No drugged feeling fatigue Yay!  Even with the humidity worse than Florida and very little sunshine.  

It could be the combination of my rants as well as I've read several good books this week.  

Believe it or not even though I'm from the south I wear shoes (well, not if I don't have to.)  and I read.  A lot. I'm a voracious reader.   I just wanted to say voracious. (snicker)    I love that word and don't get to ease it into conversation very often. 

Reading takes me away.  Minimizes my issues whether they are physical or mental.  

There is nothing more satisfying than getting swept up in a book and immersing yourself with the characters.  

Great way to take you mind off MS stuff.  


Thursday, August 29, 2013

I'm Fine. Thanks For Asking

I am to a point in my MS life that when certain people ask how I'm feeling I say with a big southern smile "Fine. Thanks for asking!"

I have several family(ish) members who always ask "How are you feeling"?  "The new medicine working"?   or "You look good. That new medicine must be working".  

Now this isn't intended for the kind people who genuinely care how I'm feeling and ask me that.  Some of them are scared and like to be reassured.  

This is for people close to me who a) Should know what MS is by now and know what it does or b) Who don't care or don't know what their talking about and should not even ask.

Now I or my husband have told these close to us people how MS works.   After a number of years we get tired of wasting our breath and have just stopped. 

We try to break it down into a simple explanation for those who don't get it, don't look it up, or are just plain stupid and don't give a shit.   There I said it.
And we only give it to people who ask.  Never will I be one of those who let's their ailments take over all conversations or force feed my disease on others. 

And if you don't truly want to "get it" don't ask.  Seriously.  It won't hurt my feelings.  To be honest, I don't want to talk about it with you.

I'm so glad you think I "look good" or "don't look sick". I work very hard to look that way.  And I mean very hard. 

 You don't realize that I've been in a brain fog and cognitive sludge for the past 4 days and am having trouble remembering what your name is.   You don't realize part of my face and leg are numb and I'm hoping it doesn't go any farther as I'm chatting with you.  You don't realize the anxiety attack that comes from nowhere and drops you to your knees.  You don't realize that I have had severe fatigue (not just need a nap tired. Your not EVEN CLOSE) for the last 48 hours and have been laying down to muster up enough strength to make it to whatever event is most important to me.  You don't know the worry that my husband and myself have after seeing more lesions show up on my last MRI.   And that's ok.  

I have a handle on it and am adapting.  It's all good.  

I recently had someone close who asked "Is the new medicine (Tecfidera) working yet"? "Is it making you feel better"?   I replied "It's hard to say. It doesn't really make you feel better.  It hopefully will make my future flare ups not as long or severe and further apart".  To which she replied "same thing." 

Um, no it's not.  

So, It's just easier to say "I'm Fine. Thanks for asking"  to those folks.  Or  punch them in the mouth.  Which is what I would like to do some days.

I can just blame it on my MS meds "not working".................

Saturday, August 24, 2013

Migraine Hell and Teenage Drivers

So my crummy day yesterday ended with me not getting a call back from neuro or GP for what I now know is a migraine. My first and hopefully last one.

 With feeling like my head would explode and Scottie being out of town I went to extreme measures.  I had my 15 year old son( very new driver. And I mean very new) drive me the mile to the closest Doc In A Box.   At that point I didn't care if my cat drove me.

Five minute wait time a shot in my butt and two prescriptions and I was out the door.   I had relief within an hour.

So, I know you have your circle of supposed MS caregivers.  But in cases like this I recommend whatever can get you relief the quickest is you best route. Even if it means having your teenager ignore stop signs to get you help.......

 My awesome son stepping up to help his Mom!!   And no, I won't let him drive again for a while!!

Friday, August 23, 2013

Not a Rainbow and Unicorn MS Kind of Day

I try not to be an MS whiner.  You know, everyone has an MS friend or acquaintance whose sole purpose in life is to constantly wear that "I'm hanging in there" martyr look on their face.   Sorry but they do.   So much you turn around when you see them because you just don't want to hear about it. And I have MS!   What a bad person I am.... 

I try to keep all my symptoms inside. Don't want to talk about it.  If you ask I'll say fine. I hate going into boring detail about my problems. . 

  But, today I am going to whisper in your ear what is bothering me.

Yesterday that pain in my neck started.  Literally. I have a burning pain that starts in my neck and shoots over to about mid shoulder blade.   I have had this since it came about at my last bad flare up in 2008.  It feels like someone is stabbing me. It burns and if left alone without help will creep up my neck into my face and back down through my left arm to the tip of my thumb.  It is a burning ice pick stabbing kind of pain.  My neuro says it's a residual thing from the bad flare.  As in, it probably won't go away.  Super.  So, a panic ensues  a little that what if an exacerbation is coming on and then I end up with a fireball of anxiety.  

Throw a headache from yesterday that turned in to a migraine that has lasted well into today and here I am.

Of course it's a Friday.  What concerned Neurologist with a bitch demon for a nurse (who thinks every patient is trying to score a round of steroids.Seriously??)   or a primary care Dr will ever call you back on a Friday???

Not in my neck of the woods they don't.   I'll be lucky to get a call back late Tues afternoon asking 'what problem are you having again"?

So, my choices are taking that ineffective Naproxen in which in my opinion is like taking an expensive tic tac.   Going to yoga to stretch out the muscle that's causing so much pain (Did that yesterday and the day before)  vomiting from the Migraine (did that already too) Does anyone yet sense my dissatisfaction with my circle of caregivers??  Or go around the corner to the Doc in a Box and explain while although I have MS my caregivers who are no where to be found and if you could just give me some relief without thinking I'm a meth head or druggie I would greatly appreciate it.     

So there.  I am not always sunshine and unicorns about my MS. 

Tuesday, August 20, 2013

My Numb Leg On Vacation

A couple of weeks ago I was in Florida.   I know all you MS'ers are gasping.  "Florida?? In the summer??? With MS??"

Yes.  I love Florida and I love the heat.  Of course my MS doesn't but I had the attitude of who cares?  F.U. MS.   I'm going to have some fun.

Fun I did.  I swam in a cool (festive and temperature wise) pool every day.  That really seemed to help.  But, when I laid
My numb foot/leg on vacation!

 beside the pool for a while I could feel my toes going numb then on up my leg to my hip.  It was creepy to feel it.  Usually I'm busy and don't notice it until it's already numb.  But, just laying there and feeling it work it's way up was so weird.

For some reason I didn't worry.  I just let it do it's thing every day.   Then I went home and it was better.  

I'm not saying to go lay in the heat and see what happens.  I'm just sharing what happened to me and I didn't let it get to me.  That's all.

Think I'll start taking pictures of just my numb leg on vacations.  Kind of like that traveling gnome guy.....

Saturday, August 17, 2013

Tecfidera at Two Months

I have been so bad in the blogging department lately huh?!!  

Well, it's been roughly 2 months since I started on Tecfidera (BG-12) and I can honestly say it's been great.   Great in the sense that it's just a pill. Great in the sense that the side effects have been minimal at best.   A little flushing or itching is all.  And that has been rare so far.  

 I guess that's why I've been lax in the blogging department.   I'm finally back on an MS med which gives peace of mind if not physical relief.   (Only the next MRI will be able to tell that)  Plus, without the shots and side effects I feel like a normal me again.  It (MS) just isn't on my mind 24/7 like before.   I mean, I still have days of numbness, cognitive issues, anxiety, muscle spasms among other things.  But, they are becoming second nature and I don't stress nearly as much when I have them as they used to.

Summer has been full of baseball, pool time, reading etc.  Other than the humidity that can lay me flat it has been exactly that.  Another summer. Another fun filled time with my family. 

Get in tune with your body.  So long as a flare-up (exacerbation)  is not coming on then try to ignore those pesky other symptoms that like to annoy you and try to ruin your day.  Don't let them.  Live your life.