MS Hug

Hugs.  When you think of a hug, you imagine something warm and comforting.  A MS hug is far from comforting; it's something that you dread.  It comes on all the sudden and can last for a few minutes or for hours.  I posted the details of what causes it and what it can feel like in the previous post.
For the past few days and a couple times in December, including one on Christmas day, I had the pleasure, errr.....rather displeasure of feeling this hug in full action.  I have always had an uncomfortable feeling at times around my waist, kind of like when you wear pants that are too tight. 
 But the past couple of days, I have woke up with the worst kind of chest pain imaginable.  Picture the scene in Indiana Jones and the Temple of Doom where the dude reaches into the characters chest and squeezes his heart out.  That is the only imagary I know how to explain what I felt.  I felt like something was squeezing my heart and would not let go. 
The previous times I had this it only lasted about 20-30 minutes, but a few nights ago, it woke me straight up from sleep.  I had previously gone to the hospital in December thinking I was having a heart attack, but everything came out normal, so this time I decided to wait it out.  An hour past, then 2, then 3 and the pain was so excruitiating.  The pain is so bad that it makes me want to vomit, or nearly vomit.  I tried pain medication with no effect.  We finally called 911.  I just could not take the pain anymore.  Nothing I did was making it go away.  My poor husband just did not know what to do. 
I get to the hospital, the did all the cardiac tests, and the doctor cleared me from any heart issues.  They determined it was the MS hugs.  I received a boat load of IV pain medication in order for the pain to go away.  I slept away the whole next day.  Last night it came back again.  Awful, horrible pain.   Worse than giving birth to my 2 children, and I did not have pain medication with them.  Last night, luckily, it only lasted 20 minutes and they had prescribed me pain medication. 
I fear that pain coming back.  I wish that pain on no one.  I can't imagine any pain worse than that and if there is, I hate to even think of it.  I hope that none of you ever have to experience it.

"Chest hug" is not life-threatening : National MS Society

"Chest hug" is not life-threatening : National MS Society

Tis the Season

Wow!  I sure have been avoiding the blog lately.  I don't know why.  I feel like I don't have anything to write about when I know I have a million rampid thoughts running aroung in my head daily. 
It's Christmas time.  Today we put up the tree.  Usually we have it up the weekend after Thanksgiving.  I normally decorate the house with all my little trinkets that I collected throughout the years.  We put on Christmas music, put on out Santa hats, and drink hot chocolate.  Today we just put up the tree and a couple of knick knacks and then I took a two hour nap.
I did manage to get the nativity set out.  That of course is the one thing that will always get put out as the true symbol of this time of year, but I am not sure if I can muster the energy for anymore decorating.  The problem with the decorating is not the decorating itself, is knowing that you will have to eventually put it all away.  Just the thought of that makes me want to take another nap.
Christmas shopping is so much easier now with the internet.   Internet sales are just as good with free shipping on most websites and can do it from the comfort from my own home.  I did venture to a store or two,  not during any busy times, with my lovely daughter, but I can never last more than an hour out before I am totally wiped out.

This is my favorite Christmas song:

http://youtu.be/4cP26ndrmtg

Life goes on

So the funny thing about life is that it just goes on.  No matter what you feel like.  Happy, sad, tired, full of pep, ready to concur the world, or ready to hide under the covers. Life happens.  It has taken me so long to write this next post, because I was at a standstill while life was happening. 
Had another MRI, 10 lesions, with "slight" progression of demyelation. Makes me wonder what their definition of slight is. 
The trouble with MS is that life does happen. In the past couple of months, I have had a relapse, a father whose cancer has returned, worries over a teenage daughter who is struggling in school academically and socially, a son who is autistic, feelings of isolation, having a change of social environment for myself, missing working in the hospital as an R.N. and so many more life style adjustments I can't even remember, frustrating doctors, oh and an increase in some pain, especially in my head.
The past few days, I have been able to walk a little bit better.  This always offers a little hope.  I went to a craft fair today.  How I love to go to craft fairs.  Brought my spirit up.  All those people.  I just love to watch them.  I wonder if they know how lucky they are to be able to walk around and browse.  I lasted a little longer than usual, about an hour and a half, but I was dragging my feet along with my cane by the time we left.  It was definitely worth it.  I will probably pay for it with exhaustion for the next few days, but today I was part of life. 
It is night.  I am sitting here typing this and my eyes are so tired, I can hardly focus.  I know that when I get up from this recliner, I will be stumbling down the hall, running into the walls, trying to make it to my bedroom without knocking any of the pictures down.  The truth is, it will be worth every ache in pain and step backward I will take tomorrow, because today I got to participate.
My hope is tomorrow, I will be lucky enough to participate too.  MS is strange that way.  You just never know what you will wake up to.  More than likely, it won't be so great, but you never know.  Maybe, just maybe, I will be on a lucky streak.


http://youtu.be/w_DKWlrA24k

sanity

I got this MS poem off of the MS Society's discussion board and thought I would share it.  I guess you have to be able to laugh at yourself at times to keep some semblance of sanity.

I think that the side-effects from the seizure medication Topamax are starting to ware off some what.  I am starting to regain my sanity and a little more of my energy.  What I am losing is my right side.  UGHHHHH!!!!!!!!      My left side has been consistently weak for over a year and a half now, but my right side will be weak for a week or two and recover, but now I am afraid it's not recovering at all.  As Sir Winnie the Pooh says "Oh Bother".

I can tell you that I am a little bit afraid.  OK, a lot afraid.  Maybe, it's just seeming to take longer cause of this stupid Topamax making me loopy for so long and sleepy for so long.  Yea that's it.  That's what it is.

I did get to go to the Balloon Fiesta yesterday.  It was absolutely beautiful.  Over 400 hotair balloons launching over my head.  Used my walker with the built in seat and was able to to do it.  Usually refuse to use my walker and stick with my cane, but I would not been able to do it otherwise and it was definitely worth it.  The best part of it was that the Creamland Cow Shape Balloon actually took off this year.   Woo Hoo.  It's the little things in life that make you smile.  You have to enjoy these things and not take them for granted.  Life is grand, no matter how you have to enjoy it, make it work for you  :o)