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

Saturday, March 6, 2010

just feeling sorry for myself

I am unsure if anyone really reads my post or not, it really makes no difference  either way.  I find it great therapy to write my thoughts down once in a while. Although initially this post was to be inspirational, lately I have found it hard to stay that way.
I am angry today.  I am mad at myself for letting this disease get the best of me lately.  I am angry that I have this illness.  I want to be who I was before.  I don't know who I am now. 
 Since I have been diagnosed, it was my philosophy to not let this disease define who I am.  Well, that has been hard to do lately.  I try to do all the "right" things and I still end up taking 2 steps backwards.  
I want to feel well and not sick ALL the time.  I don't understand how some others have longer periods of well time and I don't even seem to get a week.  I want a break. Please give me a break.  A period of time when I feel well. I want to be able to do things and not have to pay for it a day or two later.  
I need some inspiration. I need some hope.  I need some healing physically and mentally. I don't like feeling this way.  I am usually the one helping others, but right now I need some.
When we put our cares in His hands, He puts His peace in our hearts.  ~Author Unknown





Tuesday, March 2, 2010

new medication

Went to my MS clinic yesterday to figure out why I have never recovered and come back to a baseline.  There is no explanation other than the medication that I am currently on is not the right one for me.  The plan is to start a new medication called Rebif.  It is still a shot but not daily like this current one.  This one I will take 3 times a week.  
I am kind of nervous about it.  When I start reading the side effect, it kind of makes me nervous.  They will have to monitor my liver enzymes, my white blood cells and my thyroid function.  Apparently it can give you liver damage and I already am living with that from all those years of taking a certain birth control pill that we all see warnings for on t.v.  I also already have thyroid problems.  But do the benefits out weigh the risks?  I sure hope so.
I will be going for another MRI in a couple of weeks to monitor for advancement of the disease.  MRI's are not as bad as I thought they would be, but I still hate going in there.  It never fails, once I am in the machine I feel the need to go to the bathroom or my arms start jerking from the vibration.  And not to mention the obnoxious noise.  They put earphones on you and ask you what kind of music you want to listen to, the last time they forgot to change the music and I ended up listening to some obnoxious punk or something music.  Anyway, the music never drowns out the noise and I will hear that loud hummmm, clicking sound all day long in my head.
I will cause you to walk in the straight way...I will open to you the gates of righteousness..
For whoever finds Me, finds life     - Psalm 118:19; Proverbs. 8: 35-6