Friday, March 5, 2010

...but the Main Reason

Stix n Brix


I've tried to compose this post in my head for a few days now but I'm not sure how well the words will come out.  When I say that we try to take one day at a time because each good day is truly a blessing, I feel that we have had an earlier awakening to that fact than many people that we know.  I have led a very blessed life and couldn't be happier with where my journey has taken me.  Gin's MS has made for a bumpy ride at times.  She is a very strong-willed person and has pushed through a lot.  I want to share some of her journey.

She was going through life as any normal person does...taking tomorrow for granted...when suddenly one day, the left side of her body went completely numb and very weak.  It was January 1990 and she was just 26 years old.  It was as if she had a stroke.  She was using a walker just to get around.  She went to a neurologist and had some tests done.  It was Multiple Sclerosis.  It's an autoimmune disease which means that the body's immune system mistakenly attacks normal tissue.  In the case of MS, that tissue is the myelin sheath which covers and insulates the nerve fibers of the central nervous system.  The brain sends the signals to your body to do a certain thing, but the pathway is interrupted so that the signal is not received.  There is no cure and the treatments have a varying amount of success on improving the quality of life.

There wasn't much treatment available back then and she pushed her way through a lot.  Since her symptoms manifested so severely, she was able to get disability.  Everyone with MS has different symptoms, and each day is different for the individual patient.  As a reminder of that, she woke up blind in one eye in 1997.  She went to the hospital for a very high dose steroid treatment.  She walked in with complete ease of mobility but rolled out in a wheelchair.  MS hit her very hard for several months.  She used the wheelchair for about 6 months.  We got rid of a fishing boat and a pair of waverunners at that time.  We knew that "home" was important to us so we made plans to have a more accessible house built.  In 2000, while under the stress of dealing with a contractor, she relapsed and went to the hospital some and spent more time in her wheelchair.  She has been on several different treatments since 1997 and the one that she is on now is Tysabri.  She gets an IV treatment once a month.  It's hard on her for a couple of days but that wheelchair is getting dusty in the closet.  Currently, her symptoms aren't that noticeable to most people, and she get's the most she can from every day.

We know it may be hard for people to understand, but we tend to look at Gin's MS as a blessing in disguise.  It has made us aware how precious life is at an earlier age.  We have also been able to spend more time together since Gin hasn't had to try to battle with a job and the disease.  Fatigue is one of  the hardest symptoms for her to deal with.

We have been able to evaluate our life with open minds and we realize that "home" is very important to us yet we like to be on the go when we can.  The best way to have a condo at the beach, mountains, and lake is to have a home on wheels.  At times, it may be an up hill battle but we've been through a lot.  Gin is a rock and I guess I'm a pebble.  So you see, we really mean it when we say that life is too short!!

1 comment:

Gail said...

What an inspirational post! My very best to you both...I hope your life on wheels makes every day even more special. You both certainly deserve it.