Support

I've decided that the most beneficial therapy to having MS is having a good support system.  I have been lucky with familial support, but also the support from my church, old friends and even new friends that I made through an MS discussion board.  When you are feeling at your worst and even when they don't know the "right" thing to say, just knowing someone cares and wants to see you better gives you big motivation and hope.
The friends that I made through the MS society discussion board, even though they are new to me and not in my neighborhood, have helped me the most.  I was lucky enough to connect with people who suffer with this disease and know the ups and down, but that also can find the humor in every situation.  I think that is the key.  It is hard when you dwell on what you can't do, but on what you can and what can strive for.
 There are some support groups out there that I find to be depressing.  People emphasizing all the negatives and the scary aspects.  I know what the possibilities of this disease are, but I don't need it thrown in my face all the time.  I need to live life to the fullest and take it one day at a time.  I need hope.  I need inspiration.  I need to laugh.  I need to be able to cry.  But what I don't need is someone to bring me down.  I can do that on my bad days all by myself.
Now don't get me wrong.  I will be there for my friends when they are having down days, no matter how long their bad days last, as I know they will be there for me.   It's the people that when you are trying to be positive, that like to give you all the reasons on why you should just curl up on your bed and let this disease ravage your body that I am referring to.  NO THANK YOU!!!!
My family is very dear to me and their support is what really keeps me going.  I was blessed with a very loving and supportive family.  I try not to "burden" them on my bad days, I don't want them to burn out.  But they know, because they know the me before this disease.  Can't fool them at all, even when I try.
I guess what I am trying to say is, find support.  Even if you have no family or no close friends, you can find support through other avenues.  The internet is amazing.  It allows you to connect with people just like you who are miles away and you can chat with them and know that they understand.  Going to church has allowed a whole new level of support as well.  Find what helps you.  Contact your local chapter.  Use your resources, don't be helpless.  Do what you can for your physical health and for your mental and spiritual health as well.
"Now faith is being sure of what we hope for and certain of what we do not see." – Hebrews 11:1 

can't wait for the chipmunk cheeks

Well yesterday was an interesting day to say the least.  I was starting to recover from some of my Neuro symptoms related to my cold virus and I went to work and then BAM, I started dragging my right leg, my speech was very slow and hard to understand, my right hand was not cooperating, had some very painful stabbing pain up the left side of my head and etc...  Needless to say my boss drove me to my hospital where they told me to go to the ER.  Spent a few hours in the ER and now I am back on steroids for MS excacerbation.
Steroids are a blessing and a curse.  Makes your MS symptoms better and the first few days its like a reprieve, then the side effects set in.  Can't wait for the chipmunk cheeks to return.  Oh and lets not forget the facial hair and the buffalo hump, boy won't I be the sexy lady then.  The worst side effects for me are the nausea and the headaches that these steroids afford.  Oh yeah and I am one of those lucky ones that get the weight gain almost instantaneously..  Talk about improving you self esteem,  NOT.
My poor husband.  He gets to get the other side effect of steroids.  Labile emotions.  One minute I am a real sweet lady and the next minute my head starts to spin and things spew out of my mouth.  Then comes the water works, especially if my pants don't fit.  And through it all he is a saint (well one that has a little tarnish to his halo), but a saint never the less.
But as a wise man once said "And this too shall pass"

bath

So I was feeling all achy and felt like taking a nice hot bath.  Bad Idea.  I miss those days when you could soak in a bath and not come out feeling like all your energy went down the drain with the water.  It's funny the little things that seemed so harmless in the past and now it is not a good thing for me.
Did you know that at one time they used to do hot baths as a diagnostic test for MS.  If you had any symptoms after the heat then it would be one step closer to the diagnosis.  Exposure to heat makes you feel "sick" until you cool down.  It makes my legs and my arms feel "heavy".  It's hard to get out of the bath tub and I need to grab onto things in order to get up.  It is so hard to cool down as well.
I used to think that when I got "older" I would wind up living in Florida.  Now I know that if I did, I would only be able to leave the house once the temperature outside cooled down.  The heat is disastrous for a lot of people with MS.  At least it gets me out of yard work (the silver lining has been found...woo hoo).
The good news is that my muscles weren't quite as achy.  The bad news was I was pretty wiped out, but that's okay as my day has come to a conclusion.
"There are many ways of going forward, but only one way of standing still."....Inspirational Quote by Franklin D. Roosevelt.

inspirational story

http://www.youtube.com/watch?v=-qTiYA1WiY8      
I was given  link on my facebook page and thought WOW talk about an inspirational story.  The young man in the video doesn't have MS but he has more disability than I am dealing with.  Makes you think that obstacles are meant to be overcome and not stop us dead in our tracks. Maybe his ability to overcome will inspire us too.

more doctors

So I made another doctor's paycheck today and he of course was late.  My appointment was at 8 and I was seen at 1000.  ARGHHHH how frustrating.  I am so exhausted and in pain and then on top of it I had to wait.  I should have made him pay me double, 200 dollars, for MY time.  Atleast he spent a longer time with me than yesterday's doctor.
So I have decided that MS is very confusing.  It seems most doctors don't have any updated information or are relying on antiquated information.  I have symptoms that they tell me can not possibly be related to MS but then I go on all the MS discussion boards and all these people diagnosed with MS have the same symptoms.  What the heck????  They don't really know the cause of the disease so how can they possibly know all the symptoms that can manifest???  MS can not be generalized.  Everyone is affected in very different manners.
My cold seems to have gone away, but some of my Neuro symptoms are still lingering.  Hopefully they will resolve in the next day or two.  Can't seem to recover so quickly.  Think I will take a nap now.
Words of Inspiration for today "Think outside the box".  I don't know if that an inspirational thought or not, but works for me.

doctors

Today I spent all day out at dr's appointments.  One for my daughter and two for me.  I left the house at 730 this morning and now it is 5:48 and I just got home.  The 2nd doctor I saw today took forever, waited in the room for over an hour.  Why is it that if you are late for your appointment more than 10 minutes they can cancel and reschedule, but when they are late it's okay.  You should be able to tell your doctor, well you have made me waste one precious hour of my life so that will be 100 dollars please.  When the doctor finally came in, he spent less than 5 minutes with me.   What, 5 whole minutes, how generous.  Makes me think, what the heck was he doing for that hour if he only spends 5 minutes with his patients.
Well, I should mention that during that hour I got to spend 20 minutes or so napping on the patients table thingy.  I don't know what it's called, but when you are tired anything will do.  At one point I looked over at my daughter and she had her eyes closed with her head against the wall.  That didn't last very long for her.  She kept making loud uh-huh noises to get the attention of anyone passing in the hall so that someone, anyone, would at least peek in and notice that we were still there.  It didn't work.
Now that I am at the point of sheer exhaustion and my body is very mad at me, my day is still not over.  Thank God for drive-thru.  Dinner is on Mickey D's and Panda Express.  I am sure there are some sort of vegetables in everyone's meals.
The most dreaded part of the day comes at bedtime.  This is the time I must endure the daily shot, Copaxone.  It is very painful and I have tried many different techniques and tips on making in less painful to no avail.  Most of the time I am left with big welts that last for days and no fun.  My darling husband usually gives me the shot, voluntarily may I say.  The worst part is I am not even sure it is working.  I have had numerous relapses since I have been on it and even today my primary care doctor wanted me to go to the ER to be evaluated for admission.  They say it takes up to 6 months to work and I am on month 5.  Keeping my fingers crossed.
Now this Blog is supposed to have words of inspiration so here they are.  No matter what gotta keep on truckin....   That's what I do, well not in a truck, just a little sedan, but nevertheless :0)

1st post on this blog and I have already run out of things to say. It took all my brain power just to set up this blog.

I am having a lay in bed kind of day. I have a cold and it seems to take all my remaining energy from me. I am catching up on all those recorded T.V. shows that I have not been able to watch.

I have been told that I am an A type personality. I like things just so. I used to be obsessive about having my house clean and dust free and as I lay here looking at my dust ball driven house I wonder what the heck does a little dust matter. I say this when I am at my worst, but when I feel good I am a dusting queen. Somewhere along the way I will learn that not everything revolves around dusting.

My husband, lets call him Jake, he thinks I do too much when I feel well. He blames my cycles of feeling "sick" on overdoing the cleaning thing. What he fails to understand is that when I am doing my cleaning thing, it actually makes me happy. It means I am mobile and functioning within reason. I do agree that maybe I overdo it just a "tad", have yet to listen to my body, but never the less when I crank that music and do my "thing" I feel like I am alive.