A road once traveled

So much has change over the last three months. After my MRI results and a steroid treatment in early September, slowly but surely I have gained strength and moved forward. I am feeling great. I have pushed through the storm and have sunny skies ahead. I cannot tell you how much I now appreciate feeling good. I am thankful for each day that is given to me. So much so, that as soon as I started feeling better I decided I needed to set a goal for myself. Challenge where I am today to where I could be.

So here I come Myrtle Beach Half Marathon!! I know, I know, many will think I am crazy, but this is giving me such a lift. I love a challenge and this will surely be one. I need to get that feeling back, the high of not only doing something good for myself, but the feeling of success after a run. Sure this will be different from races in the past. It will be a before and after makeover of sorts. I will need a new plan, I will need to change my expectations, however, I need to do this just to say that I did. Some will call it stubborn or foolish, I call it determination, "going confidently in the direction of my dreams" (Henry David Thoreau).

I look forward to this journey I have decided to take. I look forward to growing and realizing just how far I can push myself. I will be documenting the road I travel and hope you will come along for the ride. It's going to be a good one!!

Got hope?

As I look back on the last several months I am amazed at how my life has changed. At first I was sure I could "manage" this disease. Now I see that it will truly be life altering. My mind is on overload as I hobble around with very weak legs and a hunched back. I have difficulty with balance now. I am even more clumsy than before, bumping into walls and dropping things. My mind is a fog, which is making it very hard to remember things even with reminders. I am confused with the hustle and bustle of three active girls. I cannot focus.

Physically I used to be strong, at least much stronger than I am now. Last year I ran my second half marathon. This year I have not run since March and that was on a wing and a prayer. Last year I was able to juggle many different schedules, mine, James', and the girls'. This year I am dropping balls everywhere. Last year I took 4 pills a day. This year I take 15 and give myself daily injections.

I just had an MRI last Friday (an "urgent" one) after seeing my neurologist Thursday afternoon. We are going to have to look at changing my injections...to what I have no idea. Some of these drugs involve bigger needles ( side effects include flu like symptoms, headaches, muscle weakness, migraines and a slew of others). Some involve IV infusions monthly (with a risk of getting a rare virus that funny enough does exactly what it is supposed to, stop demyelination of the white matter in your brain and spinal cord. Only this is fast acting and will kill you). There is a new oral drug coming to the market hopefully next month (it has only been used in clinical trials (200-300 people involve vs. the 2.5 million world wide that have the disease) and has shown to, in some, cause skin cancer, heart problems and infections).

There are some people that are able to function as they always have with a relapse once or twice over a period of years. My life this year has had one stretch of 10 days (late spring) and a few (meaning 3-4) days where I felt "normal". There are some people that are truly crippled by this disease, in wheelchairs or even home and bed ridden.

While I am in the throws of this disease and managing my first year of officially being diagnosed with MS I REFUSE to let this disease beat me. I REFUSE to accept that this is the end of anything. I have HOPE that we will find a CURE. I have HOPE that my daughters will never have to worry about this disease attacking them. I have HOPE that I WILL run again. I have HOPE that I will be able to look into the sweet eyes of my girls and have an answer the questions "WHY DID YOU GET MS?" "WHEN ARE YOU NOT GOING TO HAVE IT ANYMORE?"

In two weeks we will be CELEBRATING Julia and Jenna's tenth and eighth birthdays in New Bern, NC. James has put together a team of six called "Go For Jo" to participate in the LARGEST bike ride in the country to support a charity. The MS Bike Ride in New Bern, NC holds shines a light of HOPE for funding new discoveries to the cause of this disease and then a CURE to end this once and for all. A HUGE thank you must go out to James along with Brian, Jeff, Dave, Matt and Mike (who is flying in for the ride) as they make up the team "Go For Jo ". Also a thank you to their families as they have taken time away from them to train, all in the name of supporting me

It is NOT TOO LATE to make a difference. If you are moved by my story and the 2.5 million world wide who have MS, I urge you to make a donation today. NO donation is too small. TOGETHER we WILL find a CURE. To make a donation cut and paste this link: http://main.nationalmssociety.org/site/TR?pg=team&fr_id=13428&team_id=213980 .
We are only $1160.00 away from our goal of $5000.00.

for my dad

Happy Father's Day to my dad who taught me there is only one way to laugh and it needs to come from the belly. A man who NEVER missed a game of mine, he taught me to get in front of the ball, put my glove on the ground and to catch with both hands...to keep my eye on the ball and my feet firmly planted...he showed me how to "box out" and rebound...he taught me that sometimes you need to work twice as hard as someone else to be just as good...he taught me how to hustle, to be a scrappy player, to never give up...there may be extra innings or overtime and preparation is the key.

I was never a superstar at sports, although I loved playing them...there was nothing like giving it your all and winning...There is a reason people use sports metaphors...as the saying goes "Life is not a spectator sport" you need to be active participant. All the tools my dad gave to me long ago apply today...approach things head on, focus on the basics, stay grounded, box out those that do not bring you joy and hold on tightly to those that do... life goes fast and sometimes you find yourself having to pick yourself up and rebound. Good things come to those who work hard, hustle and give it their all.... it's a long game this thing called Life and sometimes you need to be scrappy to survive. Finally preparation is the key, the better prepared you are the better off you will be.

So on this father's day I want to say thank you dad for teaching me life lessons when I was younger that apply so easily today. Thank you for giving me the foundation to build a family of my own. Thank you for instilling a willingness and a desire to be the best I can be. And finally thank you for ALWAYS being on my sideline cheering me on. I love you pappy!!
xo

World Ms Day 2010

Today I joined World MS Day as well as E-MS Advocacy Day, North Carolina (on Facebook). By joining these groups I have committed to raise awareness for Multiple Sclerosis through my blog, Facebook, & Twitter (you can follow me at #joahaskell). I have also committed to sending emails to NC officials to raise awareness and to share with them the concerns that people with MS have about employment. When you have MS there are plenty of things to consider.

Over 2,000,000 people in the world are currently living with Multiple Sclerosis, 400,000 Americans live with MS and 10,000 North Carolinians live with MS. According to a recent survey of NC activists, 71.6% of people say that MS has mainly impacted their employment. According to British Journal of Occupational Therapy 71.3% of patients with progressive MS and 65.8% of patients with relapsing remitting MS are unemployed. (I have relapsing remitting MS). They also found that physical barriers are the reason for giving up work for 44.2% of people living with MS and that Fatigue is the most common factor associated with giving up work for people living with MS.

Ok so those are the statistics...here is my reality. I am currently employed by the Haskell family. I am on call 24/7. I am a teacher, nurse (injections and all), chef and short order cook, community organizer (there are 5 of us in this active community along with canine who also has a schedule to keep), maid, seamstress, painter, chauffeur and gardener. In my "spare time" I volunteer in both my older daughters classrooms with centers and character education lessons. I also volunteer as the current VP of Hospitality for the HSES PTA. All of this happens within a 1-2 mile radius of my home. My youngest daughter will be entering kindergarten in July. I am thinking of taking the summer to get things in order and then I may start looking for a career outside the home.

Unlike 3 years ago when I was working from home 20 hours a week as a research consultant for an executive recruiting firm or 10 years ago when I was the director of the professional search division of a staffing firm or even 15 years ago when I was managing an office as a recruiter for professional services, I now have MS. Since I was diagnosed in Dec/Jan I have had at least 3 separate relapses where for at least a week and up to 3 weeks I have been down and out. Physically fatigued and aching with pain...not a dull pain (that is every day) I am talking about serious debilitating pain.

How does one go about finding a job, never mind a career when they have a disease that is completely unpredictable with chronic pain? You can't really go into an interview and divulge your complete medical history, nor can you really "hide" the fact that you have this disease. Ms is tricky. It can hide and lay dormant in some. In others it rears it's ugly head daily. For most people we are just waiting for that other shoe to drop.

For me, I feel like this disease has the ability to take away so much from me...if I let it. I was talking with my friend Diane this morning. After telling her I was on day three if feeling like I was out of the dark tunnel I told her that I am afraid to feel good. I am afraid to get my hopes up because I could turn around and in an hour need to be in bed. She encouraged me by telling me that I could not live that way. I had to hold onto the good days and not let the thought of a bad day creep in. (Diane's husband has a rare form of cancer and has just been given the thumbs up from his last follow up. She reminds me that his cancer could come back at anytime, but if she lives with that thought constantly in the back of her mind she loses what she has today). My friend Holly lost her dad to cancer (it will be 2 years is August). Through out the entire ordeal she reminded herself and all of us supporting her to not let what could happen tomorrow ruin today. And of course I cannot forget my brother's quote to me right after being diagnosed "worrying is preparing to fail".

All of this encouragement and support along with my faith that God is in control helps me to not worry or dwell. Life is too short to worry about what might be, instead of knowing what today brings. So if I get a "job" or start up my career after Jackie goes to school full time great. If not, I know that there are great things ahead of me regardless. We only get one life...with or without MS we need to make the best of it.

One of my favorite quotes is by Henry David Thoreau " Go confidently in the direction of your dreams. LIVE the life you have imagined."

The wisdom of Dory

It's been another one of those weeks...Just when I think I have a handle on this MS thing WHAM!  This week I felt like I was thrown into the water, not sure if I would sink or swim.   Well that's not true...for a while there I was sure I was going to sink.  The waves came out of nowhere.  They crashed on top of me and I could not get my head above water.  I was treading with all my might and kept sinking under. 

The first wave came on Tuesday night.  I was out with my girls having dinner.  I started to have the burning in my back and I was praying it would just stay there and not go into a full blown episode.  After dinner we had to get some things for the next day...milk, bread...the essentials.  As we are in the produce section out of nowhere the MS hug grabbed me like the tentacles of an octopus.  Wrapping itself around my back and chest and squeezing the breath right out of me.  The pressure, the pain, both felt like a heart attack (or what I envision a heart attack to be, since I have never had one). 

Envision Super Wal-Mart and me hunched over my cart with three little girls trying to rub my back as I gasp for breath.  Good Lord something is so wrong with this picture.  I could not just leave it there, we needed the food for the next day.  So in line the girls are trying to make me laugh, rubbing my back and telling me that it will be ok.  We make it back to the car and the flood gates open. Some tears are for the pain and some are for the sweetness of the girls giving instead of taking.  Some are in frustration for the helplessness I feel and some are in anger that my children have to witness this episode.  Most are for this feeling of drowning that I have.

The pain and exhaustion  have continued up to and including today.  Although it does seem to be lessening.  It is like being under water, looking up and seeing sun shine through.  There is light now...I am not quite able to get my head above it yet...but the hope of being able to do so is there. 

So today I will take my wisdom from Dory (you know that super, smart fish from Finding Nemo).  Here are her words of wisdom:
Dory: Hey there, Mr. Grumpy Gills. When life gets you down do you wanna know what you've gotta do? 

Marlin: No I don't wanna know.
 
Dory: [singing] Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.

Marlin: Dory, no singing.
 
Dory: [continuing] Ha, ha, ha, ha, ho. I love to swim. When you want to swim you want to swim.

Marlin: Now I'm stuck with that song... Now it's in my head.
 
Dory: Sorry.

Unlike Marlin, I am glad to have Dory in my head to remind me that if I just keep swimming I will make it through the rough waters.  I will find the light above the waves.  Because "when you want to swim, you want to swim" and rough waters are surely not going to hold you under for long.  ><>

Shine make them wonder what you've got....

Wow, what a month! All our hard work paid off and then some. MS surely did not see me and my peeps coming when it decided to attack me. With the support of the amazing people in my life we had representation all over the COUNTRY walking to SHINE a light on a CURE for MS and raising a hell of a lot of money along the way (How does over $11,000.00 and counting sound to you?!?!) It started in New Hampshire with the Village People North making a mighty fine showing. I had family and friends by my side walking the five mile course through downtown Portsmouth, NH in rain and close to freezing temps. Not one complained about the elements. We laughed..I mean we belly laughed and we cried and we shared some really big love. I was moved to tears at the amazing support from so many people coming from so many different places in my life. I offer up many heartfelt prayers of thanks for all that were with me Heather, Lynn, my mother in law Joanne, my sister in law Jennifer, Joanna and Sue. A special thanks to Tracy my traveling companion, Ellen, Sean and Tonya the great organizers, my dear friend Mike for flying in from Chicago for the event, and last but not least Jon and Rose the host and hostess with their most and mostess.

We had representation in New Jersey with my unofficial little sister Staci. Her mom has MS and we were introduced by a mutual friend. Staci is an amazing woman who put together 2 teams of Catamount Cruisers, one in NJ the other at college in Vermont.

Yesterday we had peeps in the east and in the west. Starting in Maine with my dear friend Melissa. She and her family were walking in Portland Maine in support of their beloved Coco (that's me)...moving to Vermont where Staci and her college friends walked 6 miles...to the west where my brother Donnie and friend Jill represented in Salt Lake City with their friends...back to the east coast and Raleigh, NC where I had the most amazing day walking 3 miles surrounded by my fabulous 4, James, Julia, Jenna and Jackie Rose...along with the most loving group of friends a girl could ask for...more heartfelt prayers of thanks sent up to the big guy for Erin, Tracy, Holly, Darren, Carmen, Laura, Linda, Christine, Pete, Dave, Kristen, Matt, Lizzie, Kathy, Brenda, Anne, Julie, Sandie, Amanda, Sandy, Kerrie, Scott and ALL the kids....Katie, Nick, Sophia, Ashleigh, Georgia Kate, Sophie, Mikey, Emma, Caroline, Olivia, and Emma.

As I look back today at the pictures from all the walk events I see so much more than meets the eye. I see so many people that have given something of themselves, a piece of their heart to make a difference. These people donated money (which to be honest is the point of these walks) but they gave so much more than that...they offered a piece of themselves to me. They gave without expecting anything in return. They supported me in ways that go above and beyond. Phone calls, emails, cards, letters, videos, texts, meals, child care, a shoulder to cry on, a listening ear without trying to "fix it". And then there were the hugs, kisses and embraces that without words spoke volumes of the love they have in their hearts.

I have always tried to give more than I get. I have always tried to instill in my girls that the only way to live is by living the way Jesus would want you to, by loving one another and treating all with the love and respect you want to be treated with...I am certainly not perfect...in fact far from it...but I do try to be the best I can be...some days that's pretty darn good and other days I am hanging on by a string. For all these people to see my good days and appreciate them and then on the days I am hanging by a string to lift me up and carry me...well even I do not have words for that.

The journey is not over and I am still in the fight of my life....but the army that God has provided me with to win this war is all I need. The first battle has been fought and I declare the winners to be THE VILLAGE PEOPLE north, south, east and west. thank you for being a part of my village. I love you all so much more than those three little words can truly express...

Digging Deep

I am struggling with physically feeling bad which in turn makes me mentally feel bad. It seems to come in waves. I can push myself only so far before I crash. I can put on that positive face, smile and push though my day only for so long...and then BOOM! The tears come, I am overwhelmed and I find myself digging deep again.

Yesterday I found myself digging deep... I am battling some demons that just won't let go. I am trying to understand how to go through life while being in constant pain. I am trying to find that "happy place" and that rest stop is not on the road I am traveling right now. I am constantly hoping and praying that it will be better. I find myself bottling it all up tight and then it just gets to be too much and the top pops off.

I am struggling with the physical limitations that this disease brings to me. I am struggling with losing control. Yesterday I went out for a walk/run to try and clear my head. I found myself after walking the first mile needing to run. I felt like if I could just pick up the pace I could escape. I could leave the situation. I could be the old me. It was so physically difficult...after a mile I had to walk again. The escape was gone. After a little bit I started up again and my music changed to Bon Jovi's "Runaway"... how appropriate, that is all I want to do. I want to run away. I want to escape my body and my mind. I want to push myself as hard as I can and then when I feel like I cannot take another step...take five more. I want to dig deep inside myself to see if I am still there.