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.   

Vanderbilt Multiple Sclerosis Center

Was thrilled to see this article on National MS Society web page!!!

Vanderbilt receives designation as Center for Comprehensive MS Care

2

Feb 28, 2013

Congratulations Vanderbilt Multiple Sclerosis Center

Congratulations to Dr. Sriram and staff at the Vanderbilt Multiple Sclerosis Center for receiving designation as a Center for Comprehensive MS Care by the National MS Society.

Centers for Comprehensive Care are led by clinicians with demonstrated knowledge and experience in treating MS and offer and coordinate a full array of medical, mental health, and rehab services and have a strong collaborative relationship with the National MS Society.

Depression and MS

I have read that over 50% of Multiple Sclerosis patients suffer from varying degrees of depression.  Another article I read suggested that percentage was more along the lines of 80-90%.   That's quite a bit and shouldn't be ignored.

If you have MS and notice that you interests in things has diminished it is time to assess your mental health.  Mental health along with your physical health cannot be put to the side.  Sometimes they even help each other.   Losing interest in things you normally enjoy is usually a sign that you may be depressed.  Along with aches, pains, not wanting to get out and sleeping more.  

Sometimes someone close to you may notice the signs before you do.  If so, your physician or neurologist should be contacted immediately. Depression can be helped but can get much worse if left alone. 

After I was positively diagnosed with MS I went into a tailspin of depression along with denial for about a year.  Luckily, my Dr caught on to what I was suffering with and put me on medication.  It was rather trial and error but I eventually got the right medication and dosage to help me.  And boy, did it help!!  I still get season depression this time of year so I adjust my meds accordingly.

Nobody should have to suffer from depression.  And, if you have had it you know how debilitating it can be.  

MS has enough physical and mental challenges as it is.  Being depressed can be helped and when it is you will find the strength mentally and physically  to handle everything else.

I hope everyone is well and relapse free this week!!

Winter Blues

Ugh!   This winter weather has me singing the blues!!   But, this week temperatures hit the 60's so I am semi-good with that.   

I have been watching the news on the poor folks in New England.  Gah.  I can't even imagine being stranded with that much snow.  But, some people love it.  Kudos to them. 

I wandered around my yard with the sun on my face and mentally planned what I was doing with my yard this year.  I can start dragging all my flowers and plants out April 1st  and start planting my garden.(only 49 days!)  

Hobbies are a great way to keep you occupied and focused on something other than your health.  I can't even begin to list the hobbies that I have heard from people who have MS.   There are some awesome talented people out there!!!

I hope everyone is well and looking forward to spring as much as me.  Hopefully no bad flare-ups for anyone!   I've had some fatigue but that's about it.  And I can certainly handle that.   

Holistic Healing

So my fab primary care physician is big on adding some natural elements to my MS medicine cabinet.   What the hay?  Oh, well if he wants me to and it doesn't hurt anything I said why not.  Here were some of his suggestions.

The Swank Diet   Low fat, no red meat etc.   (a little boring for me)

2 Tablespoons olive oil a day.    Hopefully I can have it on Italian bread!

lecithin-not sure what this is

tumeric- again, I need to look this one up.

Anyway,  I do a little research and check it out.    

My main question is how do we know any of this is working????   HA   

If anyone has any holistic approaches they want to add for MS let me know.  It's always fun to hear of new things!  lol

Brrrrr

Brrrrrrr..   I don't know about your geographical area but it is cold here!!  I am definitely not a winter lover.   Some MS'ers do much better in the cold than the heat but it is rather reversed for me.   Heat makes me feel sooooo much better.   I love hot baths, warm heated water to swim etc.   Cold makes me physically ache.   Ugh.  

If you are enjoying your winter I salute you with a big cup of hot cocoa.  If you are like me and counting down the days til April 1st. (No frost here after that date)  Which by the way is 67 and counting.  Hang in there.  

Primary Care Physician

Another rainy day! But , that's ok.  It gave me a reason to go to my 3 month check-up in my pink rain boots!   If it's going to rain it's only fair that I'm able to splash freely in puddles!  

So,  I hope everyone is having a relapse free new year.  And, I certainly hope everyone is staying well and keeping germ free.  As I'm sure most of you MS'ers know what havoc a virus can wreak on our bodies and possibly set off an exacerbation.   With this particular bad flu ridden season it's best to go the extra mile in staying healthy.

Staying on top of your Dr appts. regularly is a good way to keep on top of our health.  Sometimes a Dr catches something that we have ignored or just didn't see the signs.   

I am glad to report my 3 month check-up was good.   Please note your primary care physician can be equally important as your neurologist.   They will keep track of minor illnesses and keep a good rapport  with your neurologist.   If your primary care physician is not as concerned with your MS as you think they should be please talk with them or possibly seek out another Dr. 

I was very lucky to find a Dr. who's wife has MS and even goes to the same Neurologist so he is all over my MS!!!

Ok, enough lecturing!!   Don't forget, I am not a Doctor or therapist.  I am just a patient with MS who shares her thoughts, opinions and experiences.