Moving on With MS

Today we are headed to the MS Center in Teaneck for my annual visit.  Truth is, I am really nervous.  The last year has brought some definite changes in my health.  I don’t always notice them but on a recent visit with my daughter in NC, she told me she is seeing the change and not for the good.

So for those who may be new to my blog, I will give you a brief history lesson.  I was diagnosed with MS (multiple sclerosis) in February 2016.  I should say, I was told I had it BUT the doctors didn’t want to write it anywhere except on my chart.  See my symptoms didn’t fit the checklist they had for an MS patient.

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) covering nerve fibers and causes communication problems between your brain and the rest of your body.

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 26 years, I always said “the drugs killed my brain cells” and life went on.

Fast forward to about 4 years ago when after my husband suffered a health crisis, he started saying ” you are different”. I talked about “not remembering things” to the doctor but no one seemed concerned. Then there were other health issues: IBS, glaucoma, chest wall syndrome (yes, it 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 was okay with it ALL until the night I fell apart telling hubby how bad the memory issue had become. I truly thought I was on the same road as my grandmother – Alzheimer’s. At my  next primary appointment, we finally got him to listen to how bad things were with my memory.

After countless visits to the Neurologist, MRIs, a spinal tap, endless blood tests, and an EEG – there was no treatment options available.  Just wait.  So wait we did, and in 6 months, I was blessed with no changes in my lesions.  Then in June 2017, we noticed some more changes.  Difficulty with my joints, not sleeping, and mood swings.  The new MRIs showed more and enlarged lesions so it was time to take action.

For some it may sound crazy but I opted to wait until now to go to the MS Center for treatment options. Why?  I didn’t want to be sick for the Leadership Incentive Trip.  I wasn’t sure what the future held and I wanted to enjoy the trip with my daughter. In the meantime, I have been working with a chiropractor using holistic options to help with some symptoms.  An adjustment monthly helps with the tingling.  A gluten free and dairy free diet has helped me to feel better.  The CBD oil and the iodine drops help with brain fog. It is a journey and I definitely struggle with all of the things I can’t eat.

This is not about a “pity” party or being Negative Nellie. Just for today, it is about squashing the inner gremlins who want this life challenge to defeat me.  I am not ready to give up fighting but some days it is hard to keep up the fight.

So, today we head to the MS Center to see the MS doctor.  I’m fearful but I trust God has a plan for me.

I am blessed to be able to work from home.  My WHY is about giving back to others and not letting MS take over my life. I will continue to use my business and my blog to encourage others who are struggling with this disease or any chronic disease. I want to bring a smile to those who are struggling on the inside but on the outside look “normal”.

Life has definitely become a challenge for my friends and my family. They have learned to be more patient, not only with me but with each other.  They are learning even if “I can’t remember”, I still care.  We are learning to embrace each moment – pictures become more important than ever – they do help me to remember a little.

“My planner” is the key to keeping my life in order.  I am learning I can still have a successful business despite the memory issues – lots of notes, systems and a sense of humor.  My customers are amazing despite my inability to remember the names of products or prints.  I am amazed with 98% of my business being online, I am able to grow and pay my bills.  Customers even joke when I call them by the wrong name or confuse them with someone else.

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 you continue to keep me (and my family) in prayer, and be understanding when I give you a blank look as if to say “I should know you but I don’t”.

Have a ThirtyOne-derful day!

.

MS Will Not Define Me!

 

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”.

Have a ThirtyOne-derful day!