MS Will Not Define Me!

 

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Yes, I have been diagnosed with MS (multiple sclerosis).  This is not about having a “pity” party or being Negative Nellie.  This is about squashing those inner gremlins that want to let this life challenge defeat me.   Here is the medical definition:

Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body.

Okay, let me back up just a little bit.  For years, I have been complaining about not being able to remember things.  As a recovering addict of 25+ years, I always said “the drugs killed my brain cells” and life went on.

Fast forward to about 3 years ago, hubby was admitted to CCU with congestive heart failure.  When he comes home, he says ” you are different”.  This statement haunted our relationship for years.  We had our ups and downs.  I talked about “not remembering things” to the doctor.  Other health issues arose: IBS, glaucoma, chest wall syndrome (yes, that is real), unexplained weight gain, loss of sex drive (yes, I am telling all), adjustment disorder with depression and periodontal disease. Believe it or not, I could handle it ALL.  The thing that caused me to break was the night hubby thought I wanted a divorce – the memory issues had gotten that bad.  I was devastated.  We spent the whole night talking while I cried trying to explain how bad the memory issue had become.  I can truly understand the frustration of those with Alzheimer’s and dementia.  Thankfully, we had an appointment with the primary in just a few days.  Between hubby and I, we got him to listen to how bad things had really gotten.

On to the Neurologist.  First, I found out that I couldn’t walk a straight line even without my favorite glass of wine.  Then came the MRIs, the spinal tap, the blood tests, the EEG and the trip to Robert Wood Johnson – MS Center.  No treatment options YET!  It seems that I need to have more MRIs in 6 months to see how things progress.

Hubby has spent endless nights doing research.  I have connected with some amazing people locally who also are fighting this disease.  Looking for alternative ways to stay healthy  – trying the sugar free, gluten free and dairy free.  This is a struggle but it is about baby steps – I am at least cutting back.

I have a new WHY – to not let this thing called MS take over my life.  To use my business and my blog to encourage others who are struggling with this disease.  To bring a smile to the face of those who are struggling on the inside but on the outside look “normal”.

So what does it mean for me, my friends and my family.  They are learning to be more patient, not only with me but with each other.  We are learning that just because “I can’t remember”, it doesn’t mean that I don’t care.  We are learning to embrace each moment – pictures become more important than ever.  I am learning that “my planner” is the key to keeping my life in order.  I am learning that I can still have a successful business despite the memory issues – lots of notes, systems and a sense of humor.

Not to worry, I will not be filling my blog with “my life with MS” posts.  I will continue to share my strengths, hopes and experiences so that I might encourage others.

Thank you for taking the time to read today’s blog which is definitely more personal than I have written in a long time.  All I ask is that you keep me (and my family) in prayer, and be understanding when I give you that blank look that says “I should know you but I don’t”.

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Have a ThirtyOne-derful day!

4 thoughts on “MS Will Not Define Me!

  1. Pastor… Thank you! It is I who was blessed by my Bethel family. My faith in God grew and I grew emotionally, spiritually and professionally. With all of my prayer warriors in action, I know that this does not stand a chance. I know that God has a plan which is why I shared my story – the tugging on my heart was too strong. Love you!!!

  2. Hope, I pray that God will allow all of us the joy of feeling your caring spirit for many years to come. For those years we spent building what I believe is one of the greatest ministries, Bethel Development Corporation, feeding thousands, securing a GED for hundreds, housing, heat, hope, safety and more. You blessed so many people, me included, you have the favor of God on your side! We love and pray you and Rob enjoy many many years of joy!

  3. Hope, thank you for being REAL with this post. Please know that I will be Praying for you and your family as you adjust to a new normal. I look forward to watching your journey and giving you a hug at some of the upcoming Thirty-One functions! 😀

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