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 :)

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. 

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  

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!

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! :)

  

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"

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.