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Havent written in awhile

Jan 24, 2012 - 1 comments

Haven't written anything in a while and thought it time.  I have started PT and I can see it helping.  I actually look forward to PT days now!  Waiting for Avonex nurse to find the time to come and teach me how to inject myself, hopefully soon.

Those in my life who know are supportive but sometimes do not understand where I am coming from.  Bared my soul to a very good friend and she got irritated with me.  I know that no one knows where this disease will take me.  It may never progress, it may progress in small increments, I could have a relapse tomorrow - only the MS itself knows. But I have to be realistic about life and my choices and while I remain positive, I have to plan for a life when I cannot work 7 days a week or support my mortgage and home.  And friends get mad when i say these things.  There are times when I wish for a simpler life, one where I could enjoy the mobility I have and do things and not have to work all the time.  Part of me wants to give the house up now and move to a simpler place where I could and I know this sounds corny but take time to smell the roses!  

I have spent the past two years basically working and not enjoying the life that I have.  I have access to a pool all summer and spent a grand total of 5 hours there last summer  That is sad!  Gardening, Christmas, decorating my home are all chores where they once were things I enjoyed because I have to squeeze them in and plan for them around my work schedule.  There are times when I say to myself this is no way to live.  Then I look at the home that I love and so painstakingly decorated, choosing each item carefully and do not want to walk away from it.  That and the money I have spent that I will never recoup due to housing market,  So I push on and do what I have to every day to make those mortgage payments and pay those bills.   Sometimes with  smile but usually not.  I fight because I guess  this is one more thing that I will not allow MS to take from me.  It has already taken so much I won't allow her to take everything!!!

2012

Dec 30, 2011 - 1 comments

Well as I say goodbye to 2011 I can't say I am sorry to see it go -  It has been a rough year of Doctors, tests and diagnoses. I only hope that 2012 brings with it better things.  I am hopeful that I can get my symptoms under control and that PT continues to help.  I am also hopeful that somewhere I will find the words to tell the ones closest to me about my illness.  I purposely waited until after the holidays - well that time went by too fast so it is getting to be time to tell people about what is happening with me.  Those who I have told have been wonderful.  My best friends mother wants to contribute to my expenses every month so I do not have to stress over paying bills.  The generosity of people never ceases to amaze me.  

I am most thankful that even though I have disease as overwhelming as it is - it has brought me to all of you who have helped with your information, guidance, kind words and support when I needed it most.  I consider you all friends even though we have never met.  

Thank you all and have a wonderful new year!


12/13/11

Dec 15, 2011 - 2 comments

Amazing how a day can change how you look at everything - at 5:15 am I woke up did all my usual things and by 5:15 pm I was a changed person - I was now a person with MS.  My emotions are all over the place as I imagine most people who get a dx of any disease are,  The thoughts are everywhere - and since my biggest sx is my inability to walk - severe foot drop - all I can think of is how much longer will I be able to get around,  I am starting Physical therapy so hopefully that will help.  

Decisions need to be made on DMD's and I don't have a clue which one to choose.  Giving myself shots is just not that appealing but as there is no one else to do it - I will.  

Haven't told anyone really about it a few friends - haven't told any family yet,  Since I have visible sx - my walking - I want to have one more holiday as me with a foot problem rather than me with MS.  Then I will tell people -  my parents are going to be the hardest people to tell.  Their first reaction will be to move to North Carolina where they are so they can take care of me.  My first reaction is to try and stay as independent as possible!  

So Today I truly begin my journey as a person with MS.  Yesterday was just a blur - my brain still hasn't fully comprehended this whole thing and since I was off work yesterday -I didn't even think about it or at least tried not to.  So today is the first day of this new life I have been given  not sure where it will lead me but guess I have to go along for the ride.  



Not working = homelessness in my world

Dec 09, 2011 - 4 comments

Still being a limbolander and awaiting the results of my LP I read alot of what others go thru .  Whatever is going on with me whether it is MS or not I can see how much my physical abilities have dropped over the past year or two.  And I can't help but wonder what will happen when I cannot work.  In my world no work  means homelessness.  I am alone and deal with this alone every day.  disability would never cover my mortgage let alone rent where I live.  I would lose everything I have worked so hard for,  my home which I have made a home, my self esteem, my pets which are like children to me - they are part of the reason I get up every day and I do mean every day and go to work.  I work 7 days a week to make ends meet - They depend on me for everything which is a good thing cause I may have given up long ago if not for those little faces.  So while I know the day will come when I can no longer work I just hope that it is far enough in the future because the alternative is just daunting.