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.  

  

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".................

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!!

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. 

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.....

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.

Sometimes Life Gets In The Way

So sorry for the long hiatus.  But, sometimes life gets in the way.   I won't bore you with the details.  Mom, wife, jobs, etc.  You do the math.   

I received my Tecfidera medicine today via Fed Ex.   It is crazy but it has been 1 year and 1 month exactly since I had to quit Copaxone due to a bad reaction.  Don't ask.  Bad. I am nervous and excited at the same time.  Nervous that Tecfidera will work and the side effects won't be too bad.   Excited that I will now have the peace of mind being on an MS disease modifying med.   That's the way I am.  If I'm taking something that supposedly keeps my MS symptoms to a minimum and flare ups at bay then I can put MS in the back seat and get on with my life.  I think lately that is what has happened with me.  MS has been back up front in the driver seat.  Not a fan.  Anyway,  there is an amazing MS blogger that gives such great insight and detail to all things MS. 

Please read his blog and I hope it makes you feel good like it does me!!


Wheelchair Kamikaze: Tecfidera (BG 12) And PML: Over the last month or so, there’s been a rising crescendo of concern among MS patients about the possible link between the newly approve...

BG-12 Approval

Great news today!!!!  BG-12 was finally FDA approved yesterday!!  Not sure on when it will be available but ironically I have Dr. appt with Neuro on Monday and was dreading it.  I knew he was going to make me start taking my second choice of drug therapy if BG-12 wasn't out yet.  

So, for all of you fellow MS'er who have been waiting with me for quite a while on the new disease modifying therapy BG-12  it's here!!

What If?

I hope everyone enjoyed their MS Awareness Week!!!  My guys are so sweet they wore MS T-shirts and orange ribbons to school and work this week. 

  Getting information on MS "out there" is one of the reasons that we have made such progress in the last 10 years on research and disease modifying drugs for Multiple Sclerosis.  

I usually take this time and concentrate on updating my MS blogs, profiles, and getting together either online or in person with fellow MS patients.  I am an advocate and MS Peer with the National MS Society. I also love our local MS Chapters Walk and I work on that.  

But, like some of you as much as I love my work with supporting MS I get a little down this time of year.  I feel more exposed with my personal diagnosis with MS and feel uncomfortable with the attention. There are a lot of people in my life that have no idea that I have MS.  It's not that I'm withholding that information it's just that it doesn't come up. 

  Then there is the added stress of worrying more this time of year with "I wonder how I will be next year?" or "How much longer til my next flare up?", "Will I need a wheelchair in my lifetime?"  Especially when I am in contact with fellow patients who are already experiencing these things.

So, I kind of have to kick myself and get over it.   It's normal to feel this way and with all the kick ass new meds on the horizon hopefully these questions for all of us will be no or never.

Have a fabulous week!!

MS Awareness Week

It's MS Awareness Month and this week is MS Awareness Week.  My guys wear orange ribbons to school and work this week and amazingly not everyone knows what the orange ribbon is for.  And that's why they wear them.  To educate people who don't know.  

Our local MS chapter is having it's annual MS Walk in April.  It's a wonderful event and gets quite a few people out to support MS. 

If you can, join your local chapter in this wonderful fund raiser.  You can walk for yourself or walk with a team for someone.  It's great fun and a great time to get together.