Friday, December 31, 2010

Out with the old and in with the new

These Words of Wisdom were sent to me this morning and I thought it would be great to share them as we leave this year and look forward to the new year.

  *Prayer is not a "spare wheel" that you pull out when in  trouble, but it is a "steering wheel"  that directs the right path throughout.

* So why is a car's windshield is so large and the rear view mirror is so small? Because our PAST is not as important as our FUTURE. So, look ahead and move on.

* Friendship is like a book. It takes few seconds to burn, but it takes years to write.

*All things in life are temporary.  If going well, enjoy it, they will not last forever. If going wrong, don't worry, they can't last long either.

* Old Friends are gold, new friends are diamonds! If you get a diamond, don't forget your gold.  To hold a diamond, you always need a base of gold!

* Often when we lose hope and think this is the end, GOD smiles from above and says, "Relax, sweetheart, it's just a bend, not the end!

* When God solves your problems, you have faith in HIS abilities; when God doesn't solve your problems HE has faith in your abilities.

* A blind person asked St. Anthony: "Can there be anything worse than losing eye sight?" He replied: "Yes, losing your vision!"

* When you pray for others, God listens to you and blesses them.  When you are safe and happy, remember that someone has also prayed for you.

*Worrying does not take away tomorrow's troubles, it takes away today's peace. 

As we head into the new year my wish for all of you is for GOOD HEALTH (take it from me, if you lose it you realize how important it is).  PEACE in your heart (for this will give you what you need to face the challenges ahead). HOPE (for without hope we have no future). JOY (It is so important to find joy in every day.  My mom reminds me quite often to never let anyone steal my joy.  You shouldn't either). CONFIDENCE to face all the challenges that come your way (many times it just takes us to believe in ourselves to conquer all that is thrown our way, not a miracle). BELLY LAUGHS (they are good for the soul and quite contagious!). Finally I wish you LOVE (the love of many; your spouse, your children, your parents, your friends, the love of a stranger to give random acts of kindness (and your ability to recognize that love and embrace it) and love of yourself (for if we cannot love ourselves, how can we fully love others?)

Happy New Year my friends, I love you!!

Monday, November 22, 2010

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!!

Monday, August 30, 2010

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.

Sunday, June 20, 2010

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

Wednesday, May 26, 2010

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."

Sunday, May 16, 2010

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.  ><>

Sunday, April 25, 2010

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...

Thursday, April 1, 2010

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.

Monday, March 15, 2010

Momma Bear, Father God

"A mother bear with cubs is at their most aggressive state... Mother bears are dedicated to their cubs, yet stern so they learn to survive out on their own when they are old enough. "

How does the Momma Bear protect her young from empathy? How does she protect her young from the pain she feels herself? The frustration of the unpredictability of MS? The physical pain as well as the depression and anxiety?

Last night Julia was asking me what the weather would be like today so she could have her clothes ready to go in the morning. I simply said T-shirt and jeans should work. I was in the middle of putting fresh sheets on my bed and I was limping around with leg pain. She knew I was not feeling well, but I was trying to keep up a front, at least until she got upstairs. She saw right though me. I turned back to put the blanket on the bed and she fell into tears. After a few minutes she was able to tell me that she hated it when I did not feel well. I could see the worry in her eyes. We have slowly started to see her understand exactly what MS means to our family. I told her that it was ok to be upset and it was ok to cry, but that we needed to let go of these worries and not let them consume us. We needed to realize there would be good days and bad days. I told her I was not a quitter and that this was not going to get the best of me. We came up with a solution to her worries. She was to go upstairs and write down all the feelings she was having and then to take a deep breath with each one. When she released that breath she was to release that worry. I told her to picture blowing that worry right out of her body.

I though this was going to be successful, until a little while later when James went upstairs to tuck them in. I asked him to take a couple extra minutes with her and see if she would open up. The tears and sobs came pouring out...he was able to calm her after a while, but my heart was broken. One of my most favorite things about Julia is her ability to empathize with people. She has had this quality all her life and I find it so admirable. But with that quality can come the weight of the world on her shoulders.

How do I teach my child empathy as well as the ability to let go? How do I teach her not to feel what I am feeling? How do I give her these tools when I feel so ill-equipped to handle it all myself? Where do I put these feelings of pain, anxiety, & disappointment? Do I just keep putting on that smiley face and charge forward? These are the things that rattle in my brain at 3:30 am...trying to fix the my world in the darkness. No sleep makes for a vulnerable Momma Bear.

My friend Lori gave me a book called "Streams in the Desert" (such a great devotional as my Auntie Jo also gave me this same book a few years ago) and today's reading is from Isaiah. "Do not be afraid, O worm Jacob...I will make you into a threshing sledge, new and sharp with many teeth" Isaiah 41:14-15 Now just reading this on the surface I thought what the heck does that mean? The devotional goes on to say that God can take a worm (a delicate and easily bruised creature) and make it into a threshing tool that can cut through rock and not be broken. He can take an individual who has the weakness of a worm and with His Spirit endow that person with strength enough to make a profound mark on history. It goes on to say that a "worm" should take heart as God can makes us stronger than our circumstances and turn each situation to our good.

This seems especially fitting today. My heart hurts for my sweet Julia. My body hurts me. My mind is not where is should be. Therefore, I hand it all willingly over to the only One who can take it from me and I try to let it go.

Thursday, March 11, 2010

In honor of Karla

I have been struggling the past week and a half to find words to describe how I feel about my high school friend's passing. I have wanted to write my thoughts down and let them go. I have sat many times to write and the words just do not come to me.

I am conflicted in many of my thoughts. I want to be mad, sad...I want to kick and scream from the rooftop that LIFE IS NOT FAIR!! I want to curl into a ball and cry...I want this to be a bad dream. At the same time I feel like I need to run out and grab life by the horns and give it a good shake. I need to live the moment...smell the flowers, enjoy the sunshine and then the pitter patter of the rain. I need to squeeze my babies and fill them with every ounce of love I have...just in case. I want to call and write all the people I know to tell them how much I love them, how wonderful they are and how I am blessed to have them. I want to have NO REGRETS!

Well life is certainly not fair and no one ever said it would be...but life is also what we make it. We can choose to hide. We can choose to be mad and sad. We can choose to throw a temper tantrum when things do not go our way. That may feel good for a moment, but what's next?

What if we choose to show our face, if we choose to smile, if we choose to laugh and to sing? What if we choose to dance and not care if anyone is watching? What if we choose to enjoy each day we have, no matter what it brings? What if we choose to LOVE BIG and to GIVE MORE and to BE HAPPY? What will happen next?

I think about how my friend Karla lived. She had a zest for life. She had a huge heart. She had a beautiful smile. I think that is what I will remember most, her smile. So in the words of Charlie Chaplin and in honor of my friend Karla who is in Heaven smiling down I choose to smile.

"Smile though your heart is aching, Smile even though it's breaking.
When there are clouds in the sky you'll get by.
If you smile through your pain and sorrow, Smile and maybe tomorrow
You'll see the sun shining through For you.
Light up your face with gladness, Hide every trace of sadness.
Although a tear may be ever so near That's the time you must keep on trying
Smile, what's the use of crying.
You'll find that life is still worthwhile-
If you just smile."

Sunday, February 21, 2010

Motivation

I just finished looking at a friend's fundraising page (http://www.firstgiving.com/robprunier) for his upcoming run at THE Boston Marathon. Since I started running a couple of years ago I have always had this little (ok BIG) dream that some day I would run Boston. I still hold onto that dream and hold it as my ultimate goal. With that said it's kind of funny to have such a goal when I have run only a handful of times since November's half marathon in OBX.

My friend Rob is running Boston this year and then following up that run with another marathon 2 weeks later in Vancouver. CRAZY?!?! yes, inspirational most definitely! Rob started running only a couple of years ago, just like me. We went to high school together, so we are the same age...therefore I think if he can do it so can I. I may not be running 26.2 miles with him in April, but I have signed up for a 5 mile run two weeks from today, that benefits MS. Perhaps this will be my starting point for training. It would give me a year + to get my miles up. I could do a half marathon in the fall and just continue to up my mileage over the winter with the ultimate goal of running Boston in 2011.

I am sure that you all think I am crazy for even considering this....maybe I am. Even so, today I actually feel like it is something I can do. I am going to lace up my sneakers this morning and take that first, next step toward Boston. Without putting the cart before the horse I will prepare myself as best I can for the race in 2 weeks. The power of positive thinking and taking one step at a time.

Thanks Rob for inspiring me to get back out there. To put my feet on the road and to take another step. Thanks for reminding me that with hard work and determination we can achieve our dreams. I am still running down that dream....

Tuesday, February 9, 2010

Life is good

Well here I am a few weeks out from the other shoe having dropped. Since having the official diagnosis of MS now twice, reality has set in. I have been to see the doctor and will have my specialty pharmacy sending the very expensive drug out this week. I cannot even think about the process of learning how to inject myself every day and then seeing if I have any side effects. Just not ready to go there yet. I would rather focus on the good that has already come out of this.


Since being diagnosed less than three weeks ago I have had such an outpouring of support. Friends who I have not seen in years have rallied around me. I have a couple new friends that are close to the disease one has it and the other has a mom with MS. People who did not even know I existed 3 weeks ago lifting me up and encouraging me to fight. Plus all the great people I have had by my side from the beginning. I am amazed and I am blessed.


Once I was given the second opinion I felt overwhelmed and a little helpless. I was not sure where to turn, what to do or where to go. I felt like I truly had lost a part of me and unfortunately gained another part that I really did not want. As you can see from my last post I needed to regain some control. Not over how I felt physically...it pains me to say that I may never have that again. Mentally though...that was another thing. I decided to enlist the help of my family and friends to be a part of a team for the MS Walk in Raleigh. To do something good for myself and others who carry this disease with them every day.


I am so moved by those who have pledged to join me here in Raleigh. I am amazed at the generous spirits of so many to financially support this endeavor. I am without words for how I feel about two very special friends from long ago who have decided to head up their own team in NH. In less than three weeks they have rallied friends and family to join them (and now me) in walking and fundraising for the MS Society's Central New England Chapter. We now have a friendly challenge to see who can raise the most funds. (Don't tell Ellen and Sean, but I plan to kick their butts!!!)


The days are still unpredictable and frustrating. The pain and other symptoms are still ever present. But somehow focusing on the good that can come from the situation is dulling it all just a little. I think we all have a choice in life. We may not get to choose what happens to us. We may not get to choose our circumstances. We may not get to choose the road we travel. What we do get to choose is how we respond to the curve balls life throws at us. We can let all the difficulties throw a dark shadow over all that is good in our lives. We can huddle under the covers and hope it passes on it's own. We can get swallowed up in the pain and the "why me's". It can happen to the best of us...getting caught up in what has gone wrong instead of what is still right.


In order to survive, in order to have the best life possible we must pull ourselves back up by our bootstraps. We must take that baby step forward. We must not let our spirits be crushed by things we cannot control. I was chatting with a friend today. We were talking about high school sports. I reminded him of who I was then and who I still am now. I may not have been the fastest or the most talented athlete, but I sure did have heart. I was a scrappy player who gave it her all. No one could ever say that I did not give 100%. I always felt I had something to prove. I am still that same girl. My brother Donnie shared with me a great quote back in December, after my initial diagnosis...


Life's battles don't always go to the stronger or faster man
But soon or late, the man who wins is the man who thinks he can.

I am still trying to prove to myself and anyone else who will listen that I have heart. I have a desire to live a full life. I have a desire to help others and in turn I help myself. I may not feel good physically. I may have to make some adjustments along the way. But one thing is for sure, I'll be damned if this disease is going to take my heart.


I would like to encourage all of you, no matter what life is throwing at you today to remember that you have a choice. With that choice brings power. The power to be happy. This week I have heard some bad news...a battle was lost to cancer, leaving behind a family heartbroken, one that mourns the loss of their mommy and their wife. I did not know this woman, but have many friends that did. She fought the good fight. She never gave in. She found the joy in every day. She LIVED. She made the choice and chose to be happy.
I ask that you all take a look at your own lives...are you making the choice to live? Are you making the choice to be happy? Are you looking around to see what you do have? Are you reaching out and grabbing it?

Time is so short...we should not waste it on what we do not have...we should all embrace the blessings we do have. So find someone to hug. Find someone to kiss. Find someone to share a belly laugh. Find someone to share LIFE with, because LIFE IS GOOD.





Sunday, January 31, 2010

wordle



My friend Carmen has a great word block on her blog. I loved it so much I decided to make my own. Very cool and addicting fun. You can make your own at www.wordle.net/create tons of fun!!!
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Friday, January 22, 2010

Shine

This is my first year participating in the MS Walk. Last year at this time I had just completed my first half marathon (January 19.2009). I could not have told you then what Multiple Sclerosis (MS) was. I knew it was a disease, but nothing more. I could not have told you how long the journey would be from symptoms to diagnosis. I could not have told you that many MS patients have to wait months, even years to get the official diagnosis. I could not have told you the daily challanges one must face with MS or about the physical and mental pain someone with MS has to endure. I could not have told you of the total loss of control over ones body that occurs with MS. I could not have told you how it feels to fail at being a wife, a mother, a daughter, a sister, a friend, all because you are too exhausted to function. I could not have told you how easy it would be for an extrovert to become an introvert. I could not have told you how difficult it is to tell your three little girls that once again "Mommy does not feel good" or the pain that can consume you when you look into those eyes only to see their disappointment of another day "Mommy needs to rest". LAST YEAR I COULD NOT HAVE PUT A FACE TO THIS DISEASE...

Well that was then and this is now. On January 21, 2010 I got confirmation by a second MS specialist. The face I will see when I hear the words Multiple Sclerosis will be my own. It's been a long year. It has been quite a journey up to this point. The road called Life has taken an unexpected turn in a direction no one would willingly choose for themselves. I may not have chosen this path, but He who did is where my faith lies. This journey is not my plan, but His. I will follow. As I follow I find that my plans are still the same, to be a devoted wife, to be a momma who encourages, inspires & supports my girls to be the best they can be. To be a friend who treats her friends the way she wants to be treated.

So when I ask you to support me in this new challenge, I ask you to SHINE a light on all who are stricken with this disease. I ask you to SHINE a light on the fact that there is no cure for MS. I ask you to SHINE a light on how much work needs to be done. I ask that when you think of MS, you think of me and that thought makes you want to SHINE a light on HOPE. Together, we will find a cure. Please walk with me April 24, 2010 at the RBC Center in Raleigh, NC. Please be a part of my team (The Village People). Please thoughtfully consider donating to the cause. My goal is to raise $5000. To SHINE my light on a CURE.

Wednesday, January 13, 2010

First 2 weeks of the new year

Well nobody said life was easy or fair did they? The last two weeks for me are one for the records books...and not the kind you want to keep. Since just before Christmas James and I have been trying to move forward with the diagnosis of MS. We decided that a second opinion would be the first step to take, along with researching drug therapies. Well it has been the longest three weeks we have had in a while. I do not know how many times I have read and reread my last post from New Year's day. Trying to keep myself in a a positive frame of mind while managing pain and exhaustion.

Those of you who know me well know I have a "sense of urgency". This is a phrase of have used in all aspects of my life, whether it be when I was working outside the home or now when I am home and volunteering. I have had a "let's get this done" kind of attitude. I like to consider myself a mover and a shaker...a doer...a woman of action...a go-getter...a grab life by the horns kind of girl, you get my point. I think this also classifies me as a "type A" personality also known as a "control freak."

These last two weeks have been nothing but humbling to me. As my health seems to spiral out of control and the medical community, in my eyes, taking no notice at all...I realize once again how little control I have. Doctor's offices not returning phone calls, not responding to their colleagues in a timely manner, the protocol and office politics are just enough to make a sane person crazy! Thankfully I have family and friends who pull me back from the edge. I thank God for putting these people in my life, for without them I have no idea where I would be.

After three weeks of trying to get a second opinion scheduled and finding that my first choice(3 hours away in Charlotte) was not available until April and the second choice (in Winston-Salem) was not available until the end of February, my third choice (in Chapel Hill) was not available for 18 MONTHS (seriously would anyone wait this long, ever?!?!?) and a fourth choice (in Charlotte and not even in the original plan) was not available for a month I had pretty much had enough. I was waiting for the doctor's to work all this out...BIG MISTAKE. Now after MUCH persistence, crying and a nose to the grindstone attitude I have an appointment next week locally. There were rules that needed to be bent. There were assurances that this would NOT be my doctor. I have been told that this is an exception, so many times, that I think they think I am a little slow on the uptake.

With that said I feel a small, tiny sense of relief. I feel that progress is being made. This does not take away any of my symptoms, in fact the process may have contributed to my most recent "flare up". Stress does not bode well for anyone who is seeking a second opinion. It amazes me that the medical community as a whole is so detached that this type of scenario is the "norm" not the exception.

I think I have an idea of what will happen next week...but one never knows. This roller coaster ride is an adventure to put it nicely. Twists, turns, reverse mode...you name it and it has happened. The best thing to come out of the past few weeks is a knowledge of no matter how crazy and unpredictable this ride is I have a solid support system in place. I have three beautiful girls who have learned how to be caregivers themselves with their words of encouragement, prayers and hugs. I have the absolute BEST friends anyone could ask for who have stepped up, filled in and helped me find those damn boot straps to pull myself up again.

And once again I remember that I am blessed.

Friday, January 1, 2010

Year in Review

Wow...another month, another year, another decade...where does the time go? So many ways to look back and reflect. This year I am going to show myself how far I have come. I am going to focus on the things that made my glass half full. So many times I have looked back over years and see things I want to change, things that I regret doing or not doing. Focusing on what went wrong, not what went right, focusing on things that need to be "let go"...

This year I gained drops of spiritual strength and found that yet again when I ask He will provide for my heart and soul, no matter how long I may stray.

I gained drops of maternal strength. I watched in amazement when Jackie had surgery and healed her body with a resilience in only the way a 4 year old could. I've seen my Jenna go to both ends of the spectrum of emotions and find ways to make better choices. I remember how hard it was to see beauty in myself when I was 9 (and many other ages!) and am finding ways to show my Beautiful Julia ways to see her own beauty and build her self confidence. I have been lifted up by the arms of a five year old's embrace. I have been crying with laughter by a 7 year old's gift of humor. I have been brought to my knees with pride by the determination of a 9 year old to always do her best.

I have gained drops of physical strength as I trained and completed two half marathons despite the fact of being diagnosed with MS.

I have gained drops of inner strength. I have found this past year that deep down inside of myself I am a fighter. I have a will and a desire to live a full, productive life. I have determination and drive. I have a competitive spirit that makes me strive to be the best I can be. I have a giving heart and find much reward in giving something of myself to others. I have a sense of humor and the ability to make people laugh, even when all they want to do is cry. I have found a way to shed negativity and look for the positive. I have dug deep and pulled myself up by my bootstraps on more than one occasion this past year.

As I reread what I have written I am happy. I am grateful. I can appreciate the fact that this year has been very difficult in many ways but with that difficulty I became a better me. Without all the challenges I would not have grown. I would not have started to seek out the little drops in the bucket, the small victories that make it worth taking that next step. All the little drops add up over the year. I have gained more than half a glass full of drops. My cup is overflowing.

As you all reflect on this past year I encourage you to look for the positive, to let go of the negative and to try to see the small drops in your glass. It is empowering & uplifting to be able to find the beauty in your own self. I am hoping that my daughters will be able to see their beauty well before they turn 40. If not, I pray that when they do, they will see that all that has happened in their life has made them the amazingly, unique, beautiful women they have become.

"...my cup overflows. Surely goodness and love will follow me all the days of my life"
Psalm 23:5