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Posted 8/18/2006 8:52 PM (GMT 0)

Hey Everyone

I don't think this post will be too productive, but hopefully someone will get something from it. I went to work with my husband today. He's a realtor/appraiser and that means working outside in the heat sometimes. The majority of the help i give him is in holding the end of a tape to measure houses and sketch them. Yes, i was outside in heat at about 106...and that's becoming more and more of a no-no for me. All this time...since my symptoms began...i've been pretty tolerant of the heat with a few exceptions. Lately i've noticed a slight change in that i'm more sensitive to certain heat related situations. As of now my whole right side is weak and heavy. I feel that nasty general fatigue all over and i have an enormous head ache. My cheeks/face are jerking as well as my jaw snapping and jerking sideways (VERY ODD) and my right eye is about to burst. I know this isn't anything big to most folks here and i'm not here to complain and be a baby, but it just seems that as soon as u begin to feel good and forget about things, something like this happens and reminds u that something is still very wrong. Creeping around in the back of my mind is the first anniv of my daddy's death in a few days and so consequently i'm on the verge of tears all the time. Yep, prob the reason for the headache. Hummm...maybe i am here to be a baby. Maybe that's the stressor that's triggering all this and it's not the heat. Either way, it's happening and a very clear and obvious reminder of a very unwanted intruder to my life/body. Thanks for reading this guys.

rhonda

Posted 8/18/2006 9:06 PM (GMT 0)
Rhonda,
I to last my mother and it will be 11 years in october of this year,It is still very hard when that day comes each and every year. I will not tell you it gets any better, all I can say is my thoughts and prayers are with you sweetie. In regards to the heat and the way you feel, I seem to get very drained and sick to my tummy when I go out in the heat.I have learned to accept that I cannot do the outside weather like I used to.Maybe you could get that website from Michelle that gives you cooling items to help with your discomfort. Sorry you are having a rough time and I hope that you get well soon.
Posted 8/18/2006 10:11 PM (GMT 0)
Hey Life

Thank u for replying to me. I'm so sorry for u'r loss as well. I know it can't get any easier when it's someone so close as u'r parents. With my dad, he died just days before Hurricane Katrina (i live in south ms) and so we had to hurry up and plan and have his funeral...the next day the hurricane hit with all it's destruction. No time to think about things...just act. I think that's prob why this is so difficult this year. I never really focused on it. Then again, that it's my daddy makes it so difficult anyway. Thank u for u'r kind words and encouragement...it means quite a lot.

I will ask Michelle about the site address. Thanks! That would prob be a good idea. I haven't had much prob with the heat up til now, but as i said, it's becoming more and more an issue.

I've been resting and sure enuf...i feel better. I don't think i'll be jumping any stumps soon, but better than a few hours ago for sure. Thanks again for u'r kind words. As u may already know...just being able to go someplace and whine a bit and know others understand helps beyond words.

rhonda
Posted 8/18/2006 11:42 PM (GMT 0)
Hi Rhonda,
A big hug for your bad day! I bumped up the cooling info. The only thing is you have to have a confirmed MS diagnosis to get it free. :)
Posted 8/19/2006 1:11 AM (GMT 0)
Rhonda, I lost my mom a year ago August 13, so I know how you are feeling.  And no, you're not being a baby.  I don't think grief gets any easier.  We internalize it, but it's still there, just as fresh as it was when our loved ones first left us.  I know I think about my mom each and every day, and still cry sometimes too.  She was my best friend, and I'll always miss her.

As for the heat thing, I was out in the heat with my hubby today too, getting estimates on work we want to have done on our new home.  I've noticed that tonight, I'm having trouble talking again, and am rather wobbly.  That heat will get you, girl!!  Gotta stay cool and take care of yourself, you know!

I actually had a pretty good day today.  The medication my doctor prescribed for the nerve pain (Pamelor) is working great, and the baclofen is amazing.  I've taken two pills, and all of the muscle spasm pain is gone!!  On days like this, I can almost believe there is nothing wrong with me at all. 

Oh, and the nurse from neurologist #2's office called today and said that my blood tests were all normal, and my thoracic MRI was normal too.  Well, that's great news, but what the heck is wrong with me then?  Maybe it IS all in my head.

Anyway, hope you feel better soon.

Hugs from a fellow Limbolander,

Lisa

Posted 8/19/2006 1:53 AM (GMT 0)

Hey Michelle

Thanks! I'm going to look at the site in just a min. Seems like a big step to take to order something like that since i don't even know what's goin on, but i do see some changes and maybe it's time i should consider this symptom seriously.

Hey Lisa

It's NOT all in u'r head. I've been there...u feel good...things seem to be disappearing as easily as they first came...and u can't believe u ever really had anything goin on...then...BANG!!!! It's baaaaaack!!! Enjoy the good times!! I'm really glad the new meds are helping and so quickly as well. GOOD on the blood work and MRI too!! I"m with u on the big question tho...nothing on 'paper', but something's definitely there...so what is it?? Unfortunately we may be looking for a long time. As long as my symptoms are under control or i can find answers on how to deal with them...i can manage this and live with it til/if they find anything. I hope u can find some way to deal with the prospect of not knowing for awhile as well.

I'm very sorry about u'r mom Lisa. No matter how long it gets to be, it'll always be hard. Maybe this time next year we'll be better prepared and equipped to handle this in a stronger way, but this year it's just so fresh and hard. Thank u for sharing with me and i will keep u in my prayers.

Yes, i'm learning my lesson on the heat. Lately i've noticed more probs with it and i should've known not to do what i did today. I don't work outside the home, so i can sit and rest as much or as often as i need/want to. That said, i find that just being at his office and on my feet working is a real struggle after a short time. My legs begin to get very weak and 'soft' feeling and that fatigue comes visiting. I'm very grateful at this time in my life to not have a job! I suppose i'm learning many lessons lately! Thanks for posting to me. I'll be watching u'r updates and praying for u'r well-being. Best wishes to u Lisa.

rhonda

Post Edited (rhondab) : 8/18/2006 8:36:10 PM (GMT-6)

Posted 8/19/2006 3:26 AM (GMT 0)
Hi Rhonda,

I'm sorry you had a bad day sad Losing a loved one is very hard, but I just keep reminding myself that they are always with me. Seems to help somewhat on those rough days. Try to keep yourself cool if you can, thinking happy thoughts for you!

Kimber
Posted 8/19/2006 6:51 PM (GMT 0)
Hey Everyone

Thanks to u all for u'r sweet words. After resting all day yesterday and today i feel MUCH better. Myself again! :)) I did check out the link Michelle told me about and am considering ordering something to keep with me when i have to go out with my husband again. Thank u all so much for sharing with me from u'r personal experiences as well. No one wants to hurt or wants others to hurt, but as i've said before, knowing others have gone before u and understand is somehow comforting. Thanks again.

rhonda
Posted 8/20/2006 2:42 AM (GMT 0)

The heat totally wipes me out.  So Cal doesn't usually have horrible heat but for some reason this summer has been miserable.  106 would put me on the ground.  During our heat wave a few weeks ago I didn't even leave the house.  I don't know how you did it.  The cooling packs are great if you have to be in the heat.  I also bought a wide brimmed hat, the kind gardeners use, and it almost completely shades me.  I can't wait for Fall!

Christine

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