Tuesday, December 20, 2011

Tough People Make Tough Decisions

October was a very difficult month for me.  Obviously that is the last time I blogged.  In October I underwent two separate eye surgeries and was once again taken off work from the job I love; teaching.  Being ill takes a toll on an individual as it is, but being off works adds additional stress that often one cannot control.  Regardless, I have much to be thankful for.  I spent the entire month of November updating my Facebook status daily for all of the things that I am thankful for.  Some of these items included my family, my sister, Matt, my friends and most of all my children.  These are the people that I cannot imagine my life without. But most importantly, I cannot imagine not being able to see any of these people again.  I despise having vision problems. Even more I despise the constant tests and medication.  I HATE taking all of these shots and pills.  And these are all the reasons I've silenced myself over the past few months.

I have been able to pride myself in one thing since I became ill and started this journey.  I was confident in overcoming my difficulties.  I was strong and courageous.  And most of all, I was extremely positive.  But for reasons unknown to me I have struggled these last 90 days to remain all of the above.  I have grown tired of the unknown and the scary reality.  I have lost my patience in being the case that no one seems to have an answer for.  I have grown tired of taking medicine that makes me incapable of feeling like myself. And, I have grown tired of fighting insurance companies.  I have grown tired of feeling dependent on others for survival.

So, now that I have all of that off of my chest I can begin to dig deep and find my happy again.  For a long time I had thought that finding out the why and hows of my diagnosis would help me find clarity and peace.  But now knowing that billions of dollars and hundreds of specialists may never provide me answers I must just gain acceptance.  After a visit with a new specialist in Dallas I have decided to discontinue some of the medications that I take that make me feel so terrible and center treatment to my eyes directly.  Although choosing this may put me at risk for additional surgery, I am willing to try.  I want to see my daughter's face light up when she sees me in the carpool line at school.  I want see my son's chapped lips and ornery grin.  I had my most recent round of Kenelog injections last Monday.  These injections restored my vision last year and I am counting on them again.  I have been unable to see out of my left eye since June and I am happy to report that it is beginning to clear.

If anyone ever gains anything from my writing I would hope that it is to not let life pass you by.  Be aware that there will be trying times but you can persevere. Pay forward kind deeds and show gratitude to those deserving.  Realize that everyone is entitled to a bad day.  Understand that sometimes a hug and an open ear is all someone needs.  And most importantly, don't just tell those you care about how you feel... show them.  Happy Holidays....

~love the life you live.

Wednesday, October 12, 2011

Reading IS NOT an Optional Life Skill

I love to read.  My parents were some of the lucky ones, two of their three children loved to read.  Although my love for reading lapsed in the middle school years, my mom and sister quickly turned me on to novels that captured my attention once again and I have never looked back since. So, I guess you could say I am one of the lucky ones too.  I have a interest in societies reading deficiencies not only because I am an educator but because I am a parent.  I see children struggle every day because reading is difficult for them.  Trouble with reading not only effects Language Arts development but also Math, Science and Social Studies as well.  All areas of learning are effected when a child struggles to read fluently and comprehend the material they have read.  So, hats off to Parents Magazine for presenting a well written and common sense approach to "Raising a Kid Who Loves to Read."

Parents Magazine brought together several famous children's book authors and asked them for advice on instilling a love for reading in children.  Here are some of the tips they gave, of course with my little summary in Sarahisms. lol

  • 1. Plant the Seed - a.k.a. READ TO YOUR BABY!!  So as you may be aware, your infant could care less what you are saying to them, they just like to hear the sound of your voice.  Read to them every day to familiarize them with the connection between this thing you hold (a book) and your voice pattern.  They will begin to recognize words this way from very early on. 
  • 2. Create Reading Rituals - Read to your child daily around the same time.  Good reading times are during wind down phases like naps or bed time. 
  • 3. Bring Pictures to Life - Use this time to let your child's imagination run free!! Ask them what they see in the picture or even better have them predict the story from looking at the pictures alone.  Make a game of it to see how accurate they were when you have finished reading!! 
  • 4. Look Past the Page - Let your child write their own book no matter how young they may be.  If a child can only draw pictures, have them tell you the story and you can write it for them or allow them to tell the story out loud to another relative or a friend.  Kids love to have center stage!!

I know we are all busy, but these are small things that we can easily implement in to our daily schedules.  I can look around my classroom and usually identify my students that have been read to as a child.  Not only do they share a passion for books, they are able to better understand what they are reading.  In addition, reading allows a child's imagination to run free.  Good readers usually equal good writers.  Writing is becoming a very important skill with standardized testing.... open responses are expected to be well written pieces that are produced in a short time frame, usually 15 to 30 minutes.  So, set your child up for success and READ, READ, READ!! :)

Saturday, October 8, 2011

Saturdays are for.....

I have been thinking a lot about certain things since I was taken off work.  I guess when you have all of this extra time you really evaluate your life and how you manage it.  For example, I am a teacher.  This means that I wake up everyday around 5, get my kids to school at 7 and arrive at my own school before 8.  I teach all day, pack up my stuff to work on at home, pick up the twins from school and am home around 5.  This is a long day at work but then we have dinner, homework, baths and play time. So, by the time all of this winds down it is at least 8.  Kids in bed and I start my chores.  Laundry, dishes, grading papers, talking to my favorite people on the phone, etc...  I am excited to make it to bed by 10. This wears on you as the week goes on and you start putting household chores off.  Before you know it everything has been piled on to one day.... SATURDAY (or after church on Sunday)!!!  So, the time that was meant for relaxing and rest is now taken over by chores!! So, what can we do to fix this?? Organize.

I challenge everyone to continue to leave the weekend free for family and friends.  This is what I have tried to continue to do for quite some time.  Make a list of everything that needs to be accomplished throughout the week.  Schedule yourself a few things to accomplish each evening and do them before you go to bed.  That way, given no major complications or illness in the house, your place will be clean and cared for, laundry complete and your weekend will be full of more play than work!! Lets face it, our kids want to spend time with us.... that does not include watching us do chores or drag them all over town with the shopping.  Plan something that is just for them.  Best part, it doesn't even have to cost you anything.  Enjoy a local park, take a nature walk, or do crafts at home.  I think if we all accept this challenge our weekends will not only be more enjoyable, but a lot less stressful.  I am holding myself to this and I hope you will too.  I think we all work hard enough, take a little time to enjoy the ones you love the most or help another.

This weekend the Nida clan has a special project in store.  We are repairing a bicycle for a neighborhood kid that doesn't have one.  Luke and Kennedy are really good about sharing their bikes with him but I think it is time he has one of his own.  I found a free bike in good shape.  All it needs is new tubes and a bath.  :) This is a good learning experience for my kids and I know it will mean the world to Sam. All of this is much more rewarding than tedious household stuff and I get to teach my children the valuable lesson of doing for others.  No good deed goes unnoticed!! Have a great weekend and love the life you live!

Tuesday, October 4, 2011

Another Surgery Under My Belt!! - and a long overdue update!

So, I guess I have been on a blog vacation.  Although I absolutely love sharing my thoughts and experiences through my blog, I have been VERY busy since August.  For starters, the school year started and I was allowed to start the school year! I was bombarded the first part of August with 25 eager 4th graders that needed a lot of my time and attention inside and out of the classroom to start the year off right.  Second, my children are active 1st graders that seem to have one activity after another filling up our schedule.  Third, my sister and I planned a wonderful celebration in honor of our parents 40th wedding anniversary.  So, as you can see... my blog had to take a back seat for awhile.

My appointment in Memphis was amazing.  I was armed with a lot of new ideas and information.  The doctors there believe that yes I do have M.S. but that it may not be the only cause of my vision loss.  They began the process of attempting to identify if I have a rare disease or infection that I may have carried since childhood.  Since I have not traveled to a third world country, that eliminates a lot of ideas.  However, you would be amazed at how many things you could contract from domestic animals. I am pleased to confirm however that all of our family pets have been eliminated as suspects! lol  To further explain this, being a cat owner comes with several risks.  Cats can carry several diseases that may affect vision.  Although they are all treatable, they can be difficult to diagnose without very specific testing and blood work.  So, now that the animal route has been cleared we are still testing and sorting through ideas.

I was put on a new drug, it is called Methotrexate.  It is a oral drug that is widely used for the treatment of cancer and rheumatoid arthritis.  Since I have not been responding well to the use of steroids and they have been deemed ineffective at treating the inflammation on my left eye, they hope this medication will step in and work.  I also get another new doctor, a Rheumatologist, while taking this med and he is very informative and great. His job is to monitor my blood work to make sure that my liver and kidneys continue to function properly as I take this medication.

I had surgery this past Monday to remove a cataract in my right eye (the good eye) and I am pleased to report it was a great success!!  Although I have to be off work for a little while to heal from the surgery I can see 20/20 in distance vision from my right eye.  I have not been able to see distance for many years without the use of glasses or contacts.  The only drawback of the new lens that has been placed is that I lost my near vision.  I cannot read or see up close without readers. And, I can still see only light and movement from my left eye. So, I guess I will be like my mom and dad and be searching for my cheaters to read anything or see who is calling me on my phone!! Although I know I am addicted to texting, it has been awful to not be able to read or respond to my friends that have text to check on me!! I had my friend set up an automatic response today that said I cannot read texts. Tragic!  Hopefully as the eye heals I will be able to resume my communication with the outside world.  Here is a pic of my in my cool eye shield after surgery.  I know you are jealous of my hair net, but hey I am still smiling!

On a family note, my parents party was a great time!  I am proud that my parents have made it 40 years.  These days that seems to be hard to find.  It was great to gather with family and friends to celebrate this occasion.  The food was great and so was the company!  We even had friends from Kansas that made the trip!! So... congrats Mom and Dad, I love you both.  And, thank you to my wonderful sister... I loved planning this event with you and getting to spend some quality "sister time" together!

This is the key to making it 40 years... wear matching outfits!

Tuesday, August 2, 2011

Heading to Memphis!!

I have an exciting week ahead of me!  My eye specialist at Baptist Eye Center has referred me to University of Tennessee Medical Center where I will see a uveitis specialist there.  As a recap for those of you that have followed my story.  I had surgery in February to remove my steroid injections and alleviate the high pressures in my left eye that had caused glaucoma.  This problem was a side effect of a reaction to steroid Kenelog injections.  I did well following the surgery for about 3 months.  May 12th I had a flare up similar to my presentation of the disease.  The inflammation had returned to the eye and optic nerve as well as the bleeding. However, no progression was evident on my MRI.  I began to take I.V. and oral steroids.  When I had almost completed my steroid taper at the end of June, I had another flare up.  This flare up resulted in complete vision loss (can only see lights and shadows) in my left eye, extreme inflammation and "goopy matter" (as my doctor calls it!! lol).  For one reason or another, this flare up has not responded to topical steroids (eye drops) or pills.  So, my doctors here in Little Rock have decided it is time for another opinion.  The concerns at this time are:

1.  I am not responding to Oral or Topical Steriods.
2.  If I have another flare up and it effects the right eye, I may be without vision in either eye again.
3.  My stomach needs time to heal from the high dose steroids.  

So, I am excited to have another person look at my case and hopefully gain some new insight and information.  Who know... maybe he will have seen a case just like mine and have a new solution!! So say a little prayer for me tomorrow for a great appointment and safe travels. I will post later this week to fill you in on my appointment!! Love the life you live..... Sarah :)

Monday, July 11, 2011

M.S. Education Monday: Sharing my Thoughts

In June, the Nancy Davis Foundation; erasems.org, sponsored an essay contest entitled "I have M.S. but M.S. does not have me."  Patients from across the globe shared their stories hoping not only to inspire but help educate others on the trials and triumphs people with this disease face.  Although I did not enter the contest, I thought I would share what I would have submitted with my friends and followers.

I Have M.S. but M.S. does not have ME!
By: Sarah Brooke Nida, June 2011 (diagnosed August 2010)

I am a mother. I am a daughter. I am a friend. I am a teacher. I have M.S. However, M.S. does not have me!!  I have believed since day one of this journey that I would not allow this disease to define who I am or who I will become.  I have chose to view this as a bump in the road on my "journey of life".  Although Multiple Sclerosis could be the scariest adventure for me yet, I am prepared to accept the challenge and hopefully conquer in the end. 

I have made the decision to not live in fear and to accept the reality of this new journey.  Losing my sight was by far the last thing I thought I would ever endure.  When I would think about possible bad things to happen to me, going blind was never one of them.  I took my health, my vision and my freedom for granted.  I watched the world pass by me without taking a moment to enjoy the view and truly take it all in.  Now that I have been blessed with the return of my sight, I will never take these simple moments for granted. 

I will spend my days not only educating myself, but others on the disease, the effects on the patient and their family.  I will become an activist for those fighting that are unable to do so.  I will walk and run and throw my hands in the air with excitement.... BECAUSE I CAN!!  I will spin my children around in the front yard and carry them in my arms knowing that I am one of the lucky ones.  I am lucky to walk on my own two feet and feel everything around me. M.S. may have taken some of my sight, but it sure has not taken me.  

I will continue to find the humor in the times I forget something or have to ask what the t.v. screen says.  I will take my shot and pray that it continues to work for me.  I will spend hours in the waiting room at every doctors appointment and continue to remind myself... I am lucky to be alive.  My diagnosis was an awakening of sorts for me.  I see the world and those around me in a completely different light.  I am more confident, grateful and most importantly content with who I am and who I will become.  I am not a label or a statistic.  I am Sarah Brooke and I have M.S., but M.S. most certainly does not have me. 

Sunday, July 10, 2011

A true example of strength...

Tonight I watched the amazing story of an incredible person; Jaycee Dugard.  I was overcome with several emotions through this two hour story.  Emotions of heart break, sadness and sheer anger all flooded me as I listened to not only her journey, but her mothers. I am instantly inspired when I hear of people who have overcome terrible situations in their life and surprisingly walk away with an optimistic and joyous outlook.

Jaycee's story offer good life lessons.  Take time to enjoy the simple things.  Hate serves no meaningful purpose.  Life each day to the fullest.  Never give up.  Never stop loving those who deserve it.  Take time to kiss your kids, no matter how busy you are or if you will be five minutes late to work.  These are just a few of the phrases I jotted down as I watched.  I cannot wait to read her book and learn more about her strength and determination.

I hope that all of you will take the time to reflect on your life and just how lucky we all are.  No matter the situation we face, it could always be worse.  Illness, divorce, death, financial issues, unemployment, etc... all cause us to question not only our faith but our attitude.  We must always remember that every day in life has a purpose.  Even if it seems to be the worst day you've faced most likely there is a lesson to be learned or a unexpected miracle waiting on the other side.  Take time to enjoy your family, love your kids and appreciate the wonderful things in life.  With a little but of patience and a lot of hard work we all can take time to "Live each day to the fullest, whatever that day may bring." (J. Dugard)

Click purchase to buy her book from Amazon.com                                  Purchase  

Monday, July 4, 2011

The sweet smell of.... Freedom

Well, I have been absent from blogging lately. For those of you that follow my blog, I apologize.  But, I have been working on personal projects and spending as much time as possible with my children on their short summer break!!  So, I though there was no better day than this one to share my thoughts!

Freedom is something we all take for granted.  Freedom comes in all shapes, sizes and forms.  For America, this is the day that we declare our Independence.  For some, this may be the day they celebrate their freedom from an array of many different things. For me, this is the week that I declare my Independence from my children for the next four days!! Haha!! For all you mother's out there, I know you can understand my excitement.  I will be working for the next several days so my kids will be enjoying some fun in the sun!!

Being a single mother comes with many rewards and many sacrifices.  It is important for me I have noticed to have some much needed time to "re-group" and "re-energize".  I can tell when I start to lose my patience and compassion to the twins sensitivity and needs. But, when you deal with the constant arguments and complaining for weeks you tend to perfect the art of tuning out!! So needless to say, these little breaks from my reality are much needed.  Although I am glad that I do not have to share my time with my ex-husband, I am VERY happy to share my time with my family! :)

So, what does this Freedom holiday bring to you?? I hope whatever it is... it brings you a smile to your face!! We only get one chance to do this so... Love the life you live!!  More to come soon... I have lots to tell you about from the past month!

Monday, May 23, 2011

What should be a defining moment?

I have had many moments in my life that I felt defined me as a person.  I think that lately I have just had a lot of time to decide what I am going to allow to define who I am and what I am not.  For those of you that have followed my blog over the past few months may know that I am a Maria Shriver fan.  I really love her book entitled "Ten Things I Wish I'd Known..." I am sure that if Maria were to write that book today one of her ten things may have changed.  I wonder would she have changed her chapter about marriage to a chapter entitled "do not trust your husband".

Please do not think I am a man hater, but trust does not come easy to me.  I know now that I made mistakes before I ever got married.  There were several warning signs that I chose to ignore.  I refer to this as lessons learned.  However, I think Maria had it figured out and even her marriage was not safe.  For example, #4 on her list was that "Your Behavior has Consequences".  She states several times through that chapter that no one is responsible for your choices as an adult but YOU.  #5, "Be Willing to Fail", personally or professionally.  And last but not least, #8, "Marriage is a Hell of a lot of Work".  (Sidenote, she wrote this book in 2000).

So, why do I care? Well I just like a good story like most people and this headline of Arnold's dual life has quite frankly pissed me off.  Maria is a well accomplished woman, and not just by birth-rite.  She was not afraid to fail, to fall in love, or even challenge public opinion.  And even with this recent tragedy she has held her head up high, publicly supported her children and continued to uphold her classy reputation.  So, I hope this is not a defining moment in her life to others... I would hate to think that if we Google her ten years from now that one of the first things we see is "Arnold cheats on Maria with chubby housekeeper and makes love child outside of his picture perfect marriage."   

But on a happy note... the new season of the Bachelorette started today!!! Love it! I will post about my favorites later this week! :)


Tuesday, May 17, 2011

What do you know about Vitamin D?

There is so many important benefits of Vitamin D.  As I continue my education on factors that can cause the development of M.S., many studies show significant signs that Vitamin D is more important that we ALL may realize.   So, I thought I would share a little information with my friends!

Most people assume that the purpose of an adequate amount of Vitamin D is only related to bone health. However, Vitamin D has effects on many tissues and might worsen or even cause many medical conditions (including M.S.).  But before you run to purchase some supplements, understand that blood tests are necessary to evaluate your Vitamin D levels.

Vitamin D regulates calcium absorption which helps maintain bone health.  Recent studies have discovered that "D" effects other tissues however and has has important effects on nerve, muscle and immune cells.  Vitamin D deficiency has been associated with increased risk of diabetes, rheumatoid arthritis, heart disease, multiple forms of cancer and infertility.

So who needs to be concerned? Well, I suggest that women ask for this simple screening at their next "yearly" physical.  Do no use supplements blindly because supplements do come with a risk.  Long-term high doses of "D" could lead to the risk of certain cancers or impaired kidney function. Allow your doctor to gauge if you need additional Vitamin D and how much.  And, this dosage may need to be adjusted as the seasons change.  Why you ask? Vitamin D is the "sunshine" vitamin.  Sun exposure allows your body to make its own Vitamin D.

People with MS should stay informed with the rapidly changing information regarding the effects of Vitamin D and how it could improve your general health.  And, due to the possibility of the preventative effect of Vitamin D on inherited risk of MS, people with MS should talk to their family members, siblings and their children about having their Vitamin D levels screened regularly.

For more information, read more online at nationalmssociety.org/magazine
"Vitamin D: Dastardly, Dandy or Debatable? by A.C. Bowling MD, PhD"

Friday, May 13, 2011

Its just a bump in the road....

Well I have sat here in my home since Tuesday deciding whether or not I wanted to blog about this weeks events.  Two things were haunting me...
1. I don't want anyone to pity me.
2. I do not want to accept the reality of the situation.
But, I have found that I gain great insight and release from writing.  It has been so therapeutic for me and I receive compliments regularly so I decided to go ahead and write.

On Friday I began to see a circle in my eye.  I thought it was strange so I called the doctor.  Since I had a routine appointment scheduled for Monday they said to not worry and we would take a look on Monday since I was feeling fine.  So, I went to my appointment and heard the words I never wanted to hear again.  "Sarah, it is happening again."  All I could come up with to respond was, "Ok."  When my doctor said it was happening again what he was saying was that my brain was bleeding into optic cavity, my optic nerve was inflamed and that there were cells clouding the vision of the left eye.  In one week, my vision in the left eye had reduced from 20/55 to 20/100.

Several factors were surrounding what course of treatment would be the best option for this "relapse".  If you recall, I had surgery to remove the Kenelog steroids in February because they had caused me to develop Glaucoma.  Although I am fully healed from the operation, the doctors determined this would be their last resort.  The second option was to put me on high dose oral and i.v. steroids.  And this is exactly what they decided.

So, I have received i.v. steroids (Solumedrol) and are taking oral steroids (Prednisone) for 6 to 8 weeks to gain control of the inflammation and allow my body to absorb the bleed.  These methods were highly effective for me in August and I am very optimistic they will be this time as well.  I just need to maintain a positive attitude so that I do not let my emotions take control of my situation.

I knew when I was diagnosed with M.S. that this disease came with flare-ups, annoyances, pain, a ton a medicine, and many other complications.  I guess I was just hoping I would be that case that didn't have a flare up for years and responded miraculously to treatment.  However, I am grateful to still be fully functional and independent.  My children love me no matter how I feel or what is happening with me.  Please love the life you live.... you never know what can happen tomorrow.

Friday, May 6, 2011

Mom offers a good reminder...

So I was talking to my mom on the phone while I was trying to decide about taking off work for  my children's field day.  After all, this is there 1st Field Day at their new school but I had a few obstacles before I could just make the decision.  First, my school was supposed to go skating.  What substitute in their right mind is going to take my crew skating??? Second, I had used all of my paid time off when I was on medical leave so it was going to cost me. Then my mom reminds me, "I think it is important that Luke and Kennedy know that sometimes they come before your job." AHA! Mom is right.... We always knew we came before her job.  We called 400 times a day, rode our bikes and then eventually drove our cars to her office for absolutely no reason. It never seemed to phase us that she was working but she would kick us out of the clinic when she was really busy.  So the moral of this post is that my kids come second to my 22 "other kids" enough.  They deserve to have their Mom at Field Day!

I will post pics later, they are having a "All Around the World" theme.  Each class will be presenting a production from another country.  Luke will be performing an Australian Dance.... this ought to be good.  Kennedy couldn't seem to remember what her class was performing??!!  Obviously she wasn't very interested in participating!!

Love the life you live....

Tuesday, May 3, 2011

Its not just rain... its an all out FLOOD!!

Arkansas has had some very interesting weather over the past few weeks.  First, we started off with a few tornado's, terrible wind, and hail.  Then, it began raining.... and has not really stopped since last week.  Thankfully today was bright and sunny and we all received some much needed Vitamin D.  I am one of those people who is effected by gloomy days.  My mood tends to get a little gloomy too.  So, as all of us Arkansans wait for the river to crest to see what happens next, I guess I will look at all of this weather with the glass half full attitude and be thankful we are no longer in a drought??!!??

Here are some pics that are my favorite examples of Arkansas's weather devastation:

I don't think this Cavalier works as a boat....

The river runs through it.... So sad.

So, as you sit and reflect about whatever kind of day you had... just be thankful that it is not your car overtaken by water or your town washed away by the river. Love the life you live... and by all means, try not to sweat the small stuff!

Wednesday, April 20, 2011

Childhood Dating... Twin Humor

So everyone that knows me well knows that I am easily amused.  My students and children are aware of this as well and love to delight me with their thoughts and revelations often.  One subject that cracks me up the most about kids is their concept of "Dating".  For starters, I am a Fourth Grade teacher.  Fourth graders are always "going out" or "dating" someone.  And I always am the fun hater that cracks jokes at them about not being able to drive or pay for their dates dinner.  They think I am ridiculous.... oh well, it gives me great laughs.  So, now the fun gets to start with my own children.  Luke has amazing taste in who he chooses to go out with.  My sons current "girlfriend" is my friend Lindsay.  Lindsay has won this honor by having a job, a car and a house.  Awesome! He has his priorities in line.  Kennedy has recently parted ways with her long time boyfriend, my friend who she refers to as "Uncle Nathan" for our neighbor Amilio.  Amilio is older, wiser and has a Wii.  (Sidenote: Amilio is 7.) HAHA! So, just when I think I am safe that the real dating is only going on with the older kids who can navigate chat on the Internet and have the smarts to work a cell phone, my reality crashes.  My son reveals to me that he and his friends have "devised a plan" to break someone up. WHAT??? I was very impressed with his use of vocabulary with the word devise but was shocked about the breakup issue.  So, me being the nosey nellie I am asked for the details of this plan.  Unfortunately he said all the details had not been worked out yet.  Thank you Luke for supplying your mother with a funny story and another great laugh.

So, I have asked myself over the past week why I find all this "dating" so amusing.  Is this because I am the girl who is always single?  I think that I find the humor because not only have I experienced the happy times of relationships, I have also experienced the hurt that comes with them.  I find no reason for these kids to open themselves up for hurt feelings and broken hearts.  I wish that they could focus on the awesome gift of friendship and education and save the partner search for a much later date!! Well, I am a realist than knows this is unlike.. so I will continue to wear my counselor hat for the five or six breakups that I will referee after recess in my near future! :) 

Love the life you live....

Tuesday, April 12, 2011

M.S. Walk 2011 - Came, Went, Conquered!!

Well I am so pleased to announce that I have officially completed my first M.S. Walk since my diagnosis.  I look forward to participating in this event for many years to come!! First, here is a pic of me and my wonderful girls that came out to support me this year:

 The day started off with a light breakfast, a Zumba warm-up, the national anthem, and a wonderful presentation. The presentation was to recognize the top fundraiser of the event.  Over the past 12 years he has raised $250,000 for the M.S. Foundation.  I was in complete awe at this total.  I worked so hard to raise money and I barely made it to $700! Whatever way you look at it, fundraising is tough.  I admire his ability to contribute so much to the cause.

The walk was not what I had expected it to be I must say.  I think when you have participated in the Race for the Cure for several years you imagine it to be similar. This was not a 5k by any means... we may have walked close to a mile.  However, I loved that everyone affected by Multiple Sclerosis was able to participate. Whether confined to a chair, using a cane or able to walk on your own - all were able to complete the walk with ease.  I admired that about the event.

In closing, I am thankful to those who came to support me, those who donated to the cause and those who bought a team t-shirt.  I am very lucky to be surrounded by friends, family and co-workers who are here to "lift me up" those days that I need it the most.  I am a very lucky girl.

Thursday, March 24, 2011

Small Compliment = One Happy Girl

For months I have been talking about bettering myself for many different reasons.  There are certain things in my life that I have made a priority since I lost my vision and was diagnosed with Multiple Sclerosis.  Any traumatic experience usually brings people to re-evaluate their life.  For me however, I wanted to make a conscious effort to better my life and my children's.  I started with little things, I made a list of 20 Wishes.  I keep these wishes nearby in my mind as I make decisions.  The most important things in my life of course are my children, my family, my health, my close friends and my students.  I want to be the best me that I can and that required me to eliminate a lot of the unnecessary stress.  I am usually attached to my cell phone and for years it has distracted my attention.  My sister and I spent this past week together and today on my way home she complimented me.  She noticed that I spent my time focused on my and my children and not on communication with the outside world.  I know to some that might not seem like much, but that is something I have worked hard to resolve.  So thanks sis for noticing my "little improvements" on the road to my happy!  So at least this is one little way that I can say I am practicing what I preach and "loving the life I live."  :)

Monday, March 14, 2011

The Twinkies... ARE 6!

Well, it is so hard to believe that my babies have turned 6 years old.  On March 11, 2005 I welcomed in to the world the most wonderful and challenging additions to my life.  Although they were VERY small, their impact was very big.  I thought I knew what love was before I had children.  Now however, I am truly able to embrace what unconditional love means.  Luke and Kennedy are so funny.  They do some of the silliest things.  Some people would never guess that they are twins because they are so different.  However, their personalities compliment each of them so well.  It is nice that they each get to be one of a kind! :)

This year was their first "big" birthday party.  They celebrated with school friends at the ATA Karate Club that they are members of.  The party was a huge success and fun was had by all.  It was so nice to see the kids and some of their friends outside of the school building and their uniforms having fun.  It was a pretty good size crowd too... 19 kids!!  The kids were so spoiled, their master teachers played games, told stories, gave a lesson and they had pizza and cake! Who could ask for more?

So this year we are officially big kids.  Not that it means they will be responsible for their own needs, never sleep in my bed or solve their own problems... but hey, this is a milestone in my opinion.  Most importantly, I have to keep reminding myself to not sweat the small stuff and to relax and enjoy parenthood.  As fast as these 6 years have flown by, they will be in college before I know it.  I always pride myself in trying to do the best for my kids; their birthday is just another chance to renew that commitment!! I love you two... always!

The Party Crew.. well most of them at least!

Monday, March 7, 2011

M.S. Education Monday - M.S. Awareness Week Begins Soon!

M.S. Awareness Week begins March 14th and I personally find this to be another amazing opportunity to educate more people about the effects of Multiple Sclerosis on not only the patients, but their family and friends as well.  Multiple Sclerosis is a disease that can effect men or women, and people of all ethnicities.  No one is without this diseases reach.  For me, I find it to be alarming how many people know so little about M.S.  Chances are, you know someone who is fighting this disease everyday. 

Today, I would like to dispell some of the myths that I hear most often. 

#1 - You're so young, how could this happen to you?
ANSWER- Well, like many auto-immune diseases, M.S. can effect people at any age.  The most common people that are diagnosed are women between the ages of 30 and 40.

#2 -  You look fine from the outside!
ANSWER- Thank goodness!! Actually, this is what bothers me the most sometimes. Yes, some people who are fighting M.S. have difficulty with their extremities and require the use of a walker, cane or even a wheelchair.  However, those cases are not the most common.  Many people have pretty average lives but their relapses and side effects can be quite daunting.  Most M.S. patients deal with terrible fatigue, nerve pain, headaches and vision changes.

#3 -  Will the shots cure you?
ANSWER - No, the shots will not cure me.  Currently, there is no cure for Multiple Sclerosis.  However, there are many amazing medications on the market that make relapses happen less frequently, and actually slow down the progression of the disease. 

#4 - Why did you lose your vision? This lady I know just has problems with her foot going numb.
ANSWER - Since Multiple Sclerosis is a disease that effects the communication between your brain an your spinal cord, as well as develops lesions on your brain and deteriorates the mylein sheath, many body systems can be effected.  I have met people with a varying level of problems.

#5 - Will you die from M.S.?
ANSWER - Not likely.  It is more likely to die from many other natural causes than the actual effects of Multiple Sclerosis.  M.S. most commonly effects the quality of your life the the length of it. 

So... educate yourself and others.  Get involved with M.S. Advocacy groups or activities in your community.  Whether you donate a few dollars or walk a few mile... your support can make all the difference.  So I dare everyone to "Join the Movement"!

Monday, February 28, 2011

M.S. Education Monday - MS Walks popping up all around you!

M.S. Awareness brings all of those fighting this illness one step closer to a cure by fundraising for higher education and continued funding of research and medications.  As previously discussed in my post, "What does a cure cost?", I discussed how expensive clinical trials and medications can be.  Unfortunately, these costs will most likely never change.  However, raising money and awareness brings new exciting opportunities to the table for those who are fighting the disease or may know someone who is.  You may have noticed your friends sending you an invitie to join them on their "Walk MS" team this spring.  I personally have three other friends with the disease.  Most of the walks are coming up here in the next few weeks.  I strongly encourage you to take part in these events.  Even if fundraising is not your cup of tea, join your friend and show your support.  The motto of the National MS Foundation is "Join the Movement".... I think that fits so well.  I am so proud to currently have 15 friends to sign up to walk with me on April 9th.  I hope to continue my fundraising efforts as well to lend my hand in research to continue to improve the quality of my health as well as many others!!  Continue to read my blog to follow my journey.  To view my teams page please follow the link provided below!! Happy MS Monday!!

Click here to view my page:     Sarah's Walk MS Personal Page

Next week: MS Awareness Week March 14-20!! Exciting news and information coming soon! 
Slogan for this year: What does MS = to you?

Friday, February 25, 2011

WOW!! Eyeballs are gross....

Well, it has been a much eventful past few weeks!  I found out earlier in the month that the pressure in my eye was too high.  The theory on this from my doctors was that I had developed glaucoma as a result to the medication that was injected to my eyes to help restore partial vision and lower the inflammation to my optic nerve.  I received three series of Kenelog injections.  They were successful in helping my eyesight and they sped up the process of calming my optic nerve.  I will never regret choosing to have them done.  As with all medications, side effects are a risk.  In my case, the medication never fully absorbed into my system.  This caused the pressure in my left eye to continue to climb over the past three months. 

Regular, healthy eye pressure should sit somewhere between 10 and 14.  My has harbored in the 40's for quite some time.  So, I was referred from my retina specialist to a glaucoma specialist to help regulate and remedy this problem.  One of the biggest problems with glaucoma is up to a 30% vision loss.  In a situation like mine (one who already has vision loss), this is not good news.  We tried three different approaches.  The first week I used a drop called Isotol.  I did not respond to those.  The second week we tried a combination of Combigan and Travitan drops.  My doctor referred to this as the "kitchen sink" approach, meaning that was the most intense approach.  My eye once again showed no response.  Then, for the third week I continued the combination drops and started taking a pill called Diamox.  Diamox pulls the fluid off.  The side effects are awful.  The pills cause numbness in your face, hands and legs because they rob your body of necessary electrolytes.  Thankfully, this goes away as soon as you cease taking the medicine.  On the fourth visit, my pressure had reduced to 21 with the pills.  However, the pills are not something you can  take long term, and the pressure was still not within the range she desired.  So, surgery was the only option left.

Two surgery options were available to me.  The first option was to remove the Kenelog from my eye. In many cases, 70%, removing the steroid will lower the pressure to a healthy level.  This surgery requires little down time.  The Kenelog is removed by making an incision, removing the steroid and putting a few dissolvable stitches in the eye.  The second option was to have a new drain put in the eye.  This surgery takes roughly 6-8 weeks to heal, requires continued observation, medication and comes with a whole list of restrictions.  Naturally, I was thrilled to try removing the Kenelog injections first.  I am not a big fan of being down and out for over a month!! 

So, I had surgery on Monday.  It was such a interesting experience.  You are put under anesthesia while the eye is prepped and the incision is made.  Then, as they are completing the operation you wake up.  Sounds awful I am sure but you cannot feel anything.  I carried on a conversation and even cracked jokes with the doctors as they completed the operation.  I was allowed to leave the surgery center a mere 30 minutes following the procedure!! Truly amazing how much technology has advanced all of these procedures.  Recovery has been pretty easy, I just feel like I have something in my eye all of the time and the stitches are very itchy.  And, it is very gross to look at.  My eye is very bloody and yellow.  The stitches have yet to dissolve but they said this takes about a week.  Here are some pictures from the procedure, I will keep you posted on my progress! :)
My lovely eye patch! :)
My left eye 1 day post surgery.

Monday, February 14, 2011

Thirty is not so bad.... :)

So today is the day where I reach yet another milestone in my life.  I have officially cleared the mark of three decades!! Yeah! It was a glorious day.  I received many Happy Birthdays, lots of hugs, and several sweet messages.  Birthdays bring strangers out of hiding and show that your good friends really are the best.  But, most importantly they allow you to see that no matter what, your mom will not break tradition.  I have always loved angel food cakes.  You know the one with the angel food center in a bunt cake shape with the whipped strawberry topping??? It is to die for.  And when I got home from work today, my Mom and Dad appeared with the cake.  My friends gave me a cake when we were dining at Bravo the other night.  It too was strawberry.  So if I look a little round over the next few weeks you know where it came from... TWO strawberry cakes!! I must also mention that my dad bought me a new leaf blower for the big b'day.  I know that you are probably thinking, what??? But, those who know me well know that I love trees but cannot stand leaves.  I drive my neighbors crazy with the constant blowing and mowing but I love to have a well kept yard!  I like people to know that I keep my space well maintained.  So, each day when I get home I blow the leaves off my carport and driveway. But no more extension cord for me!! Stevo has upgraded me to the gas one with lots of power!!! Really stoked about this gift. 

Enough about that... what in the world will I do know that I am thirty.  Well, I will be the same person I always have been.  Fun at heart, serious when necessary, crazy about my kids and passionate about life.  I will however, resolve to continue to make some necessary changes for my health and my happiness.  I will not shed tears for those who are undeserving.  I will let go of some of the anger and resentment I feel towards my ex-husband.  I will wake each day and be thankful for the miracles I have been given instead of the tragedy I have faced.  I will know that the disappointments or difficulties I have faced have help shape and mold me into the person that I am today.  I will not be afraid of what "may" happen.  I will love my children, I will teach my students and most importantly I will wake up each day and just keep breathing. I made twenty wishes for New Years, & I still intend to keep every one of them.  Oh, and we cannot forget that I will become more diligent with my wrinkle cream... can't just let myself go!!

So I am ending with words from Maria Shriver.  I just finished one of her books and I enjoy her writing immensely.  She is honest, smart and has a great sense of humor.  These are her words on "trying to be Superwoman":

"Perfectionism doesn't make you feel perfect, it makes you feel inadequate.  You are not worthless because you can't do it all.  You are human.  You can't escape that reality, and you cant expect to.  Self-acceptance is the goal.  If Shakespeare were a Superwoman, she might have said, "To be or not to be -- take time and wisdom."

Make a Wish :)

Thursday, February 10, 2011

"Blizzard 2011"

Ok... I know that many of my Kansas friends would not consider 8 inches of snow a Blizzard, but in Arkansas... it's a Blizzard!!  For starters, at the first sight of snow or sleet all schools and businesses close quickly.  Sometimes, they call school so quickly by the time we get home the sun is shining and the "weather" is already done.  Regardless, snow brings a lot of fun for the kids and the adults.  I am always glad to relive my childhood moments of sledding and snowman building with my children.  We love to play outside together.  However, there is one big problem.  Now that I am an adult I get soooo cold!! My feet, hands and face are always freezing and they act as if they don't even notice that it is 16 degrees outside with the wind blowing 10 mph.  Children are so resilient.  Another admission I must make is that sledding is now very scary for me.  I think a majority of the problem is I probably weigh 100 more pounds now than I did the last time I went sledding.  Extra weight equals extra speed.  I however discovered a solution... just bail off!!  One funny event of the day, I sled right into a neighbors trash dumpster and recycle bin.  I say I should receive at least 10 style points for that one!!  Hope you are all enjoying the snow and staying warm.  I know that I am looking forward to Saturday and its 60 degree weather! :)

Tuesday, February 8, 2011

"Monkey on my Back"

Do you ever feel like you are carrying around a "Monkey" on your back?? I think I have felt that way a lot these days.  For starters, I have spent years relying on the wrong people.  Whether is has been friends or relationships I seem to sometimes take on more than one can handle.  One of my best friends and I have come to the conclusion that we are attracted to people projects.  Although you are aware from the get-go that you cannot change someone, you try your damnedest to "help" them.  However, when the relationship comes crashing down for some reason you are surprised??

For me personally, I have either dated the emotionally unavailable,the addicted to something, or the unreliable men.  I think that people with a problem are attracted to natural care-givers.  I have always loved taking care of others and I am gratified when I feel needed.  I know there are some people out there that would not take advantage of someone like that, but many do.  I guess there comes a point in life where you become a "hardened heart".  Scorn by past experiences or unwilling to allow history repeat itself you become a different person.  For me that has resulted in being very distant and almost disconnected. 

I am not the girl that gives up easily.  I stayed with a hopeless addict for years to keep my family together.  I sacrificed everything to keep my marriage knowing that I could "fix" him.  It took him finally getting arrested to wake me up that this was not a battle I could not continue to fight.  Then, immediately following my divorce I dated my best friend... not good situation either.  He is a great friend, terrible boyfriend.  Marching to the beat of your own drum, schedule and needs are fine... but when you fail to realize that once a week communication is a must to keep a relationship together its time to move on. 

My good friend **Roy** as he calls himself reminded me last night of one of the most important parts of my life these days.  He said that I motivate him to do things he doesn't want to do some days.  To know that my journey or struggle has inspired at least one person is a victory to me.  So, I am going to continue to remind myself that it is not anyone else that defines my happiness.  It is solely up to me.  I have to spend this time to focus on "me"... even the new version of me I am still getting to know.    

Sunday, February 6, 2011

Five for the Fight

So my church finished a lecture series today entitled Five for the Fight.  It was an amazing series that set forth to give people the tools to overcome many of life's biggest challenges.  I have come to the conclusion that a majority of the stress we have in our life is self made, but then there are the other issues that are completely out of our control.  Which ever category the problem falls in, solving it or getting through it is where people hit a road block.  This series enabled you to use scripture to help guide you to a solution.  So when is the last time you were asked to memorize scripture?? Well for me I think it dated back to my private school days at Sacred Heart.  But, I was up for the challenge.  After all, it was just five verses. It was really neat to see all of the people, kids and adults, at the memorization stations each week.  Everyone really got in to it, not to mention the prizes that you could win if you completed all of the verses. But I think the most important element of this activity was the ability to dissect the scripture.  If you are feeling lonely, it lead you to a verse.  Battling addiction, gave you a verse.  Financial troubles.... gave you a verse.  According to a Gallup Poll many self declared Christians do not know how many books are in the bible or how many Apostles there are.  Basically the point is that people are attending church but have no knowledge of the foundation upon which their religion was built on... the Bible.  I have to admit that I don't study Scripture and don't know many people that do.  However, maybe when I am feeling low or are looking for guidance I should turn to it.  After all, it must have done something right to earn the nick name, "The Good Book". Here are a few of my favorite verses I learned:

Keep a cool head. Stay alert. The Devil is poised to pounce, and would like nothing better than to catch you napping. Keep your guard up.    1 Peter 5:8-9

The Lord is close to the brokenhearted and saves those who are crushed in spirit.  Psalm 34:18

Saturday, February 5, 2011

"Bowling Date"

Luke :)

Kennedy :)

So today I took the twins bowling.  This trip needed to be perfect to help my son forget about a let down that happened earlier in the day.  However, this trip to Professor Bowl was far from perfect.  To start out, we received a lane next to a Birthday Party.  Now I hate to be the fun hater about a party, but the kids were sitting all over our lane and we did not even have a place to put our shoes.  Then, we go to find a ball.  There were about 7 balls left in the whole place, all over 14 pounds.  So, I decided I will seek assistance from the counter guy.  I was so disappointed. I explain the ball situation (LOL) to the clerk and he responds, "Yep, there all gone." So I say, "So I guess we should just go home then?" and he fires back, "If that's what you want to do, but you already paid and we don't issue refunds." JERK!!! But I decided I would not allow this jerk to ruin my day, so the kids and I begin to granny bowl with out 14 pound ball.  All is going well and then I realize that Kennedy is walking weird.  I ask her if something is wrong with her shoes and she says she doesn't know but they feel funny.  I take a closer look at her shoes and realize the retard gave her two left shoes.  I have never been so happy in my life to march back up to the counter and point out the rude guys mistake.  He just laughs of course.  So, with two of the correct shoes we head back out to the lane and continue along with our game.  No additional problems happen from this point except for the fact that I lost to a 5 year old.  Congrats Kennedy, you kicked my butt!! 

Friday, February 4, 2011

Time Goes By but the Memory Doesn't Fade...

Today I received a early birthday present in the mail.  I love getting packages so I was very excited to come home to find a package awaiting me at the door.  My Aunt bought me a diamond heart pendant to celebrate my "30th" birthday that is coming up.  It truly made my day.  She said "I know you already have a lot of diamonds, but when I turned 30 your Mom bought me a diamond and I wanted to do the same for you!!" I was elated and I told her how much it meant to me and that I didn't own many diamonds anymore. 

And this is where the title comes in.  Time goes by but the memory does not fade when someone takes your belongings and pawns them to feed their own addiction.  I was married to a drug addict.  I married a man who didn't even drink alcohol and divorced a full blown heroin addict.  To tell the entire story of his cycle of addiction would take months, but that has no place here.  Rather yet, the pain that he brought me is something I will always carry with me.

I cherished the jewelry that I owned.  I had a beautiful diamond pendant that my grandfather has given me.  A amethyst birthstone ring that my parents had purchased for me in lieu of a class ring. A marquise ring and a wedding band.  All pawned for a fix.  I know that material items should not weigh on our happiness but most jewelry has a story, a memory.  These are things I will not have the luxury to pass on to my children. So, my Aunt's gift entirely made my day.  I love the necklace.  I love the thought that I will get to pass it on to my daughter or grand-daughter and say, "My Aunt Sarah gave this to me for my 30th Birthday."

Thursday, February 3, 2011

In a Funk...

So, I know I missed MS Education Monday this week.  I guess you could just say that I was in a little bit of a funk.  I think sometimes when things are running smoothly we take that for granted.  Then, when something changes it becomes too difficult to handle all at once.  I was so glad to be back at work.  I finally felt like I was getting my groove back and then... BOOM!! Routine appointment turns into another referral to a different specialist, more tests, more appointments, more medicine and even another possible surgery! And, on top of everything else I have to have a root canal.  I say let's just sweep this week under the rug and forget it happened!!

But, on a good note I had a great conversation today with an old friend.  She and I had many good times together as teenagers. Now, the two of us can share stories of our battle with MS and the daily struggles that are difficult for others to understand.  Sometimes I think that is all any of us are really looking for... someone to listen and someone to understand. Another friend sent me an email today that really made me smile.  She said "I am not going to tell you anything uplifting, I know you don't want to hear it right now.  I just want you to know I am here to talk to if you need anything."  That email meant the world to me.

So I am not going to let this bad week consume me.  I am going to laugh with my children and enjoy the sweetness and innocence they bring to my life.  I am going to not focus on all the things that I did not get done this week, I will focus on the things that I did accomplish.  And if nothing else goes right, I will fall asleep soundly knowing that I by far have the cutest Valentine's Day decorations on my door at school. LOL :)

Monday, January 24, 2011

MS Education Monday: What does it cost to find a cure???

What does it cost to find a cure is really a loaded question to most.  However, I have been researching for months about the funding that goes in to the research of MS and related illnesses. As many people know, research for these diseases are funded through non-profit organizations, fundraisers, and major drug companies.  For example, I am participating in the Walk MS event.  Events of this nature bring people together that are somehow effected by the disease or people who know someone that is.  Each participant is asked to seek donations to contribute to the fundraising efforts of the National MS Society.  All donations go to covering the cost of the event and research for treatment and cure of the disease.  This is similar to the Susan G. Koman race for the cure.  However, the MS Society does not ask each participant for a registration fee... it is free to partcipate. This is their way of basically raising awareness. 

So.... I researched the cost for a clinical trial for medication or research.  It was astounding to me.  It is estimated that a clinical trial on average costs about 2.5 million dollars for early development, research and one 12-week study series.  This means that the clinical trial would only be about one-forth complete with enough data for the FDA to even recognize its findings.  Kennedy Krieger Institute at Johns Hopkins University like many other advanced colleges of medicine studies specific aspects of the disease through reseach and willing participants.  Without these colleges support, many studies would never be able to even break ground. 

Why is this important? Well just like everything else, research is expensive.  However, there are too many people who are dependant upon this research to live as much of a normal life as possible.  I think many people get tired of being asked for donations or even discussing money in this economy. I commend the companies who are assisting MS patients.  Like many other expensive drugs, if you are unable to pay for your meds (including co-pays) they offer assistance to make it possible to never miss a dose due to financial reasons. So all I ask is for people to really do their research when donating to a cause.  The number one most important question to ask is how much of my donation goes directly to research?  If its less than 50%, I recommend chosing a different charitable cause.

Happy MS Education Monday!! Next week I will discuss Unique Protiens in Early Stages of MS (reasons behind the Spinal Tap for diagnosis).

My Son is in the Running for Cute Kid!!

So, I am trying to drum up all the support I can.... Luke is in the running for Cute Kid for the month of January from Parents Magazine.  Please help him win with your vote!!! You can vote daily, free of charge of course.  If chosen the winner, he could win up to $25,000 in scholarships and prizes!! Thanks for voting! Check back later today for my MS Education Monday post! Have a great Monday :)

Click here to vote:
Cute Kid Photo Contest      

This was the photo I entered:

Tuesday, January 18, 2011

Five Year Old's Version of the history of "Martin Luther Junior King"!!

So I think that kids are hilarious when you ask them what they learned at school.  I am fortunate to have two kindergartners that not only have fabulous teachers, but also love learning.  When they got in the car today I immediately asked them how there day was, what they had for lunch, and what they learned about.  This is sort of our everyday routine that they usually answer with one or two word responses acting annoyed that I would even be asking these sort of questions.  Today however, Luke was a wealth of information on the topic of "Martin Luther Junior King." It started out to cute for me to even begin to correct the proper saying of his name. Here is how the story went:

Luke: "Mom, today we talked about Martin Luther Junior King since yesterday was his birthday.  He was brown, and he wanted to be a minister like his dad and help out all the rest of the brown people. Did you know that people thought brown people would make us sick if we were around them?"

Me: "Well Luke, there was much more to the story than that..."

Luke: "No Mom, they couldn't drink with us, eat with us, go to school with us or even ride the bus with me."

Me: "But you don't ride the bus."

Luke: "Well if I did ride the bus they couldn't be on there. I mean... this happened way back in the 80's!!!!"

Me: "Wow, are you sure it was the 80's? I was alive in the 80's!"

Kennedy: "Luke, I thought she said the 50's."

Luke: "Well whatever she said. Anyways, I am not going to help people anymore because that's what got him shotted and I don't want to be shotted!"

So, really cute story.... but I just can't believe that out of all he learned today he has decided we shouldn't help others!! Oops! Guess I should keep that in mind the next time I am teaching my history lesson on Martin Luther King, Jr. :)
Luke and Kennedy

Monday, January 17, 2011

MS Education Monday - What is MS to me?

For the past few weeks I have given a lot of general information about Multiple Sclerosis, its treatments, symptoms, etc.  So today, I thought I would take the opportunity to discuss what MS currently means to me and the impact it bears on my life. One of the most important things for people to understand is that MS comes in all shapes and sizes.  You can line up 20 MS patients and they all might share different symptoms or difficulties.  I find this to be one of the reasons people have so much trouble understanding or accepting the disease. 

For me, Multiple Sclerosis is a scary, life changing pain in the butt.  To wake up blind is an indescribable feeling.  I have never been so confused or nervous. For days I thought all of this was a bad dream.  To be diagnosed with MS was alarming, yet a huge relief.  I had spent a week being a lab rat to several doctors and technicians who were working desperately to figure out why a healthy 29 year old female woke up and was bleeding in her brain causing extreme vision loss.  No car wreck, infectious disease, traumatic injury, nothing.  Just a pure phenomenon. But, finally my vision began to restore in small increments and stabilized about a month ago.  Although I cannot see perfectly, I am able to see well enough out of one eye to drive.  The only other symptoms I currently have are numbness in my left hand, tons of bruises from injections,  inflammation in my brain and optic nerve and a slight blood leak in my left eye.  All of which are able to be kept under control with medication and injection therapy. So that is what I am dealing with these days!

On a personal level, MS has been a blessing for me.  I am closer to the friends that I should be, have let go of frienships that were unhealthy for me to maintain any longer, and left me with an even stronger relationship to my sister.  My mother has been given another reason to get to mother me, my brother has yet another nick name for me (Ray Ray) and my dad has been the man he always is... great.  I never though I would ever be given the reason to ask someone if they would still love me if I were blind, could not walk or be the same me I always have been.  I guess now I know that if I find someone who is willing to accept me, my beautiful children and my illness, they must be one hell of a person!! So never take life for granted, live each day to the fullest and take a moment to see everything around you as a blessing.... Love the life you live. 

Here are some pics of the injections I recieve... in case you're curious :)
Pretty gross, but kind of cool. LOL

Kenalog Injections

Copaxone Injection Site

Tuesday, January 11, 2011

Twenty Wishes :)

This weekend I read a great book!  "Twenty Wishes" by Debbie Macomber is a journey of several widowers who are searching to find happiness again.  Although I am not a widower, I think we all could use a little help getting back to happy.  With a new year beginning, many people resolve to do certain things.  They may want to lose weight, stop smoking, fall in love or even finish school.  But, what if we quit the resolution business.... According to Dr. Oz, only 1 in 750 New Years resolutions are actually kept or achieved.  I don't think these odds are particularly good.  So, I suggest making a wish list instead.  Wish for things you have always wanted.  Make the wishes realistic and encourage your closest friends to join in!

In the novel, many of the widowers "wishes" were coming true and without the help of their friends, they may have not even noticed all the good that was happening around them.  Some of the wishes in the novel included:

  • Learning karate
  • Finding a honorable man
  • Learning to belly dance
  • Travel to Paris
  • Own a pair of red Cowboy boots
  • Learn to knit
  • Learn to laugh again
I think that all of the above mentioned are within reach.  So, I have already started my list of 20 Wishes.  Since I am turning 30 this year, I think its a good time to love the life I live and really look for my true happy.  It's good for all of us to do a little cleaning sometimes, even it that cleaning includes ourselves or our priorities! Here is a sample of some of my 20 Wishes..... but some just have to remain private!
  1. Take a foreign language class.
  2. Perform at least 1 act of random kindness a day.
  3. Let go of old grudges.

Book Credit: Macomber, Debbie. Twenty Wishes. Mira Books, Ontario Canada. 2008

Monday, January 10, 2011

MS Education Monday - Does Weather Affect MS Symptoms?

With the recent change in temperature in Arkansas this weekend, I decided to dedicate this MS Education Monday to the weather's effect on MS symptoms.  And, I am happy to report that most of the information recieved was positive.... as long as you are in a cold climate!! So, here is a article I found on the Real Living With Multiple Sclerosis website.  I think it sums up the "weather effect" on MS! Happy Reading.... Oh, and of course I had to add a little picture of one of my little snowbunnies to the bottom of this post. Kennedy sure is enjoying her snow day!

Weather or Not!

Real Living with Multiple Sclerosis, Sep 2004 by Zielinski, Karen 

Persons with MS can experience heat and weather sensitivity.

Give me a cool, dry day any time! My MS rears its ugly head a lot more when the heat and humidity go up. I'm especially sensitive to humidity, and, when the day is hot, the humidity often is high (my understanding of basic science tells me that warm air can hold more moisture).
People often say that their arthritis acts up when the weather gets cold or unusually humid, and I wondered if there was a correlation between the weather and MS. When I talk with the nurse at my neurologist's office during extremely hot weather and ask her how her day is going, she says, "Well, we've had an unusually busy day because of this weather. People feel a little worse than usual during this type of weather."
What happens to me is this: My hands get numb, and I'm a little more klutzy on those days. I don't feel up to doing my physical therapy routine because my legs don't have the same energy or stamina as when it's not so humid. Woven into all of this is that when it's humid, I don't sleep well at night; when I don't rest well, I don't perform as well physically.

Weather's affect on people with MS
There's truth to the notion that weather affects our bodies. According to The MS Information Sourcebook (published by the National Multiple Sclerosis Society; http://www.nationalmssociety.org/sourcebook.asp), "many people with MS experience a temporary worsening of their symptoms when the weather is hot or humid or when they run a fever, sunbathe, get overheated from exercise, or take hot showers or baths. Some people notice that their vision becomes blurred when they get overheated-a phenomenon known as Uhthoff s sign. These temporary changes can result from even a slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses."
At home, keep the temperature cool in order to rest well and to best perform activities of daily living. And learn your body's patterns; it's an important matter of personal safety. If you already have considerable weakness in your body, you don't want to compound your risks by adding lethargy to the situation. If you're barely able to walk a few feet and the weather turns hot and humid, you need to be aware in advance that the weather can make you less mobile.

Advice to people with MS

Although the amount of activity a person with MS can handle during humid weather is quite individual (depending on the severity of their dis ease and the extent of how the weather affects them), the major point is to control your environment. If, for example, I have a baseball game at night and it's the hottest, most humid day of the summer, I have many choices: I may stay home; I may stay for only part of the game; and, if I do go, I can take a mini-fan or use an ice vest to try to keep cool.
So be aware of the weather and how your body reacts to it. If it reacts poorly to heat, wait for a cold front. If not, crank up that air-conditioning and take it easy. This, too, shall pass!

Loving her day off school!!

Wednesday, January 5, 2011

Happy B'day to my Mom!!

Well... its officially almost over, but still must be recognized.  Today is my Mom's 59th Birthday. I wonder if she minds that I am sharing her age?? Oh well, she'll recover.  But, that is the one thing that I love most about my mom.  She seems to be able to endure whatever we throw at her.  For instance, we have a million names for her.  Sal-Pal, Big Sal, Moomsie, Grammie, etc. Brad even calls her Fluffy sometimes and she will answer. Sally is the women that goes to the dentist for a crown and refuses to be deadened.  She lives in chronic pain but barely complains. She amazes me and these days especially, I look at her to gain the encouragement to keep moving and endure what life my hand you. 

 My Mom loves being a mother so much that she has even replaced all of her grown children with dogs.  I guess she just really misses all of our fighting so much that she traded in yelling for barking!! So on this day I salute her... for taking such good care of me all these years, being a good "Grammie" to my kids and most of all for always being here for me no matter what.  Thank you Mom... I love you.

Mom and B.B. 

Monday, January 3, 2011

MS Education Mondays -

 M.S. Treatment Basics

Patients diagnosed with multiple sclerosis face great uncertainty, since the course of the illness varies so widely among patients. Experts recommend a multidisciplinary approach to the disease, which might involve a neurologist, a nurse or social worker expert in MS, and possibly a specialist in mental health (since depression is so common and the suicide rate is higher than average).

Decisions to Treat MS after First Indications (Clinically Isolated Syndromes)

Evidence now strongly suggests that the most destructive changes from multiple sclerosis in the brain occur very early on in the disease process -- and may cause considerable damage even before symptoms begin.
Many experts are now urging treatment after a first episode of relapsing MS (a clinically isolated syndrome) using medication called disease-modifying drugs. They include three interferons -- IFN1b (Betaseron) and IFN1a (Avonex, Rebif)--and glatiramer (Copaxone). These drugs are all effective and may help slow down or even prevent progression in some patients. Definitive studies comparing them are ongoing.
The best current approach is to use specific findings from advanced MRI techniques to help determine which patients are at highest risk for progression and would be likely candidates for early treatment with disease modifying drugs.
Interferons and other disease-modifying drugs can have significant side effects and are expensive. Furthermore, a significant number of patients have a mild course that can be managed with less toxic drugs. Nevertheless, strong evidence suggests that delaying treatment in most patients increases the risk for severe disability.

Treating Acute Relapses

Corticosteroids are the standard drugs for treating an acute relapse and hastening recovery. Typically, intravenous methylprednisolone (IVMP) is given once a day for 3 days. Sometimes this is followed by oral prednisolone for a few days.

Maintenance Treatment for Relapsing-Remitting Multiple Sclerosis (RRMS)

Disease Modifying Drugs. Since the introduction of the disease modifying drugs -- interferons beta (Betaseron) and alpha (Avonex, Rebif) and glatiramer (Copaxone) -- relapsing-remitting multiple sclerosis is now considered a treatable disease. In patients with very active MS, some experts start with Betaseron or Rebif. For patients with possible or probable MS, they begin with Avonex. This drug is slightly less effective than Rebif and Betaseron but has fewer side effects. Copaxone is also be a reasonable choice for early mild MS. It appears to have the fewest side effects, longer relapse-free rates than interferons, and its benefits persist for years.
The newest drug, the monoclonal antibody natalizumab (Tysabri) was approved in November 2004 for treatment of relapsing forms of MS. The FDA withdrew it from the market, however, in February 2005 following reports of serious neurological events. In June 2006, the FDA allowed natalizumab back on the market but with special restrictions (see Drug Treatment section).
Other Approaches. Some research has reported benefits from the use of pulsed administration of intravenous methylprednisolone (IVMP) or intravenous immunoglobulin, although there is not enough evidence for either approach to recommend them as first-line choices. Other drugs showing promise include azathioprine (an immunosuppressant) and laquinimod (an oral immune-modulating drug).

Chronic-Progressive Multiple Sclerosis

Treating Secondary Progressive Multiple Sclerosis (SPMS). Interferons and other standard treatments for relapsing-remitting MS may be helpful for patients with SPMS who are still experiencing relapses. It is not clear if they help those whose condition has become continuously progressive.
Mitoxantrone (Novantrone) was the first drug approved for SPMS. The drug is an immunosuppressant and is proving to delay relapse and progression. Side effects, however, can be serious in some cases. Some experts recommend using mitoxantrone when evidence suggests progression to SPMS, and continuing the interferons Betaseron or Rebif for maintenance.
Other immunosuppressants, such as cyclophosphamide, methotrexate, and cladribine, may help some patients with SPMS. They can have very toxic side effects, however, and there must be clear treatment indications for patients who take these drugs.
Treating Primary Progressive Multiple Sclerosis. No treatments have been proven yet to slow progressive multiple sclerosis. Studies using interferons and glatiramer are under way.

Treating Complications

A number of treatments are available for managing symptoms and complications.

I personally am on a interferon medication mentioned named Copaxone.  The medication is administered through daily injection therapy done yourself at home.  Although the long term effects of the medication are still unknown, this drug has been widely used to treat MS for over 15 years.  Studies show that the medication is highly effective to slow the process of the disease and may even help reverse some of the effects of the demylination. Copaxone also offers the patient with less side effects than some of the other injectable therapies.  This was the deciding factor for me when choosing my medication. Although an oral medication is currently on the market, research is limited and has been shown to increase the risk of developing certain cancers.  :)