Welcome

Welcome to all who visit this Blog whether you suffer from Multiple Sclerosis or have a loved one who does. Hopefully this will help all who read understand that they are not alone even though MS affects us all in very different ways. Maybe it can help open eyes of those around who do not know the unpredictability of daily life with MS.
The purpose of this blog is to offer support and inspiration. Please feel free to share any useful information that you have gathered along your journey and words of inspiration. It is hard to overcome all the obstacles we must face and it is nice to hear ways people have adapted. Inspirational stories and anectedotes are especially sought after.
If you post and suffer from Vision disabilities you are welcome to post in all capitals and no one will think that you are shouting.
my blog

Friday, November 19, 2010

Thank God for little blessings

Today was a good day. I actually was able to work my full shift.  I am grateful for that, although I have to tell you I am so very tired.  A welcomed gift awaited me at home though.  One of the ladies from my church brought over a meatloaf, scalloped corn and homemade bread for us.  It was delicious and allowed my husband to take a little break.
I carry a lot of guilt around me when it comes to my husband.  He is wonderful and loves me very much.  I feel as though he got the raw end of the deal.  He works so hard and I appreciate everything he does for me.  To be honest I don't know how he does it.  He works full time, then spends his free time helping out one of the elderly men in our church, helps me out, does work around the house.  I am truly blessed to have him in my life. I try to tell him Thank You for everything he does, but I can't truly relay in words my gratitude.  
We went to the grocery store yesterday.  Let me tell you, there was a time that I would spend a whole day at stores and would come home still as rested as when I left.  We spent one and half hours out yesterday  and you would have thought that I ran a 20K marathon, plus a 20K bike ride, plus hiked a fourteener.  That is how exhausted I was.  It is so weird that our bodies can change so drastically over a course of a few years.  I am by no means old, not a spring chicken either, but MS makes you feel like you are beyond a hundred years old when it comes to energy (or lack there of).


This song I dedicate to my husband, whom I love with all my heart and am grateful that the good Lord brought him into my life.
http://www.youtube.com/watch?v=-AtaZ_NU_tU

Wednesday, November 17, 2010

AFO, not UFO :0)

So the neurology appointment went better than expected, still hate going to the doctors.  All the same neuro exams.  Still can't walk on my tip toes, heels or tandem without losing balance.  Guess I better not ever get pulled over by the police, would fail that exam even though I am not a drinker :0)
So it seems I am going to get an AFO or something like that. It's a little splint like device for my left foot.  I have foot drop and apparently it's never going to go away.  This AFO will support my foot up so I don't trip on it.  What fun, (sarcasm).  I already look pretty stylish with my cane, but now with this beautiful contraption I will be such a fashionista.
I am hoping not to be using my cane for much longer.  I don't need it in the house, but when I go out I still lose my balance.  It's weird.  Or  maybe I'm weird.  Probably the later, but that's okay, I've come to terms with it.


Monday, November 15, 2010

Doctors

Today I am going to see the neurologist, not my MS doctor.  It's a little stressful for me to go to all these different appointments.  I actually hate going to the doctors, as often as I have to go.  I hate being poked and prodded.  I hate being on display.  That's what it feels like.  With this neurology clinic, I never see the same doctor.  I usually see either a medical student or a resident, and then they bring in the attending doctor.  I have to tell my story all over again.  Why do I go to them then?  Because I can't afford my medications any other way.  Utilizing this clinic allows me to afford my Copaxone.  With just my health insurance, my copay is $250 a month, but through this clinic my copay is only $8.
I am struggling today.  I am sick of taking medications, so many for different things that all relate to MS.  A couple for other diagnosis. I can't stand taking medications, especially that shot.  I know that I can't control the course of this illness, but I take the medications so that hopefully it will slow down my progression.  I want to be able to participate in life, not sitting on my butt, but actively participating.