When Life Gives You Lemons...

First, I have to brag a little.  My dog Cookie was featured earlier this year in a great article in DNA Info, a

Cookie

site that covers local issues on Manhattan's East Side.  I am so embarrassed to say it took me this long to figure out how to get it into my blog!
I am a member of Community Board 8, an advisory board to the Manhattan Borough President.  I guess you could say Cookie is an honorary member!   Take a look at this article and then I'll get to the surprise...

DNAInfo



O.K. so now you know how old I am - remember the last post about the Fountain of Youth?  Let's pick up on that because now you also know that I have multiple sclerosis.  I'm very lucky that most people wouldn't know to look at me today that I have had this scary and unpredictable disease for 13 years.

Back in 2000 this was not the case, and it is no exaggeration to say I was scared to death.  I had a 9 year old son, a toddler daughter and a husband who traveled 180 days a year for work.  My right (dominant) hand was floppy and useless. I couldn't change my daughter's diaper.  My mother had to come to the hospital to shave my legs, which were alternately numb and tingly.  After nearly 20 years at ABC, I had just started a new job as a writer/producer at Dateline NBC.

I spent 9 days in the hospital going through test after test because they don't want to give you this diagnosis.
I am forever grateful to the neurologist who did, because he also said,

"I would be happy to be your doctor, but if you really want someone who sees a lot of MS patients, you should see Dr. Apatoff."

So Brian Apatoff became my neurologist and my friend.  He saw me in the hospital and said,

 "You'll go for occupational therapy and maybe you'll get back 90% of the use of your hand."  

I took this as a challenge.  I went for 3 months of intense OT 3 times per week.  If they told me to do exercises 3 times a day, I did them 6.  I carried around a bag of hand putty and exercise devices and used them at random during the day: riding in the car, at the movies, on the bus, etc.

There are 4 main variations of MS: Relapsing remitting, primary progressive, secondary progressive and progressive relapsing.  If you are going to get this disease, you want the first one, as there are now a number of obscenely expensive drugs to treat it.  Before 1996 or so, you were out of luck.

It felt like I'd been holding my breath. When I went to my 3 month check up, I said to Dr. Apatoff,

"I'm a big girl, but I have to know what I am dealing with.  So what kind of MS do I have?" 

By this time I had indeed regained 90% of the use of my hand.  Dr. A. told me I had classic relapsing remitting.  I started to breath again...

From the beginning, I was fortunate to have the very best information available to me.  Shelley Ross, a Senior Producer I had worked with at PrimeTime Live, had written a book about MS in a former life.  She called me not realizing I was still in the hospital and gave me one of the best pep talks of my life.

I delved into anything I could get my hands on about MS, and the very first thing I learned was that people w/ MS have a normal lifespan.  Right answer.  I was able to reassure my kids that though I didn't know what shape I was going to be in, I wasn't going to die.  This is the only thing children care about.  Are you going to be here, Mom? Good, can I have a glass of milk?

I also read inspirational books like the classic When Bad Things Happen to Good People by Harold Kushner.  

Though I was on auto pilot for about a year, I refused to let MS defeat me.  I went back to work and the people at NBC - then owned by G.E.- couldn't have been more supportive.  They bought me a track ball for my office computer.  They let me come in late so I could go for Physical Therapy and leave early so I wouldn't have to deal w/ rush hour (I was using a cane).

Here's some of what I've learned:  people who love you want to help, but they frequently don't know how.  It is up to you to tell them.  Do you need Mom to watch your kids?  Ask her. Do you need someone to accompany you to the doctor?  Ask.  Do you need things from the grocery store? Make a list and ask.

Those of us who are guilty of excessive independence (busted) have to learn how to let people help us.  It is not a sign of weakness.  It is a sign of acceptance and love.

A friend once told me, "I have 2 friends w/ MS.  One never talks about it.  The other one talks about it all the time."  Guess which one I am!

As you can imagine, I have a lot to say about this ridiculous disease, and I will come back to it occasionally to share some coping strategies, but this isn't a blog about MS - it's a blog about saving money!

I'm so interested in hearing what you think about this blog.  Please sign up to follow me and make a comment.  As I said, I'm a big girl, but I have to know what I'm dealing with!

Next time - back to school bargains...

Keep calm and carry on...Lori A. Bores