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May 21, 2012, 08:29:27 PM
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Horrible Holiday Weekend...I hope all of you had a good holiday  (Read 1692 times)

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  I had been feeling some what decent for the last couple of weeks. I should have known it was to good to last. My weekend started off okay on Friday, my husband and I decided to take our kids to a parade and then go to a festival after the parade. I was feeling great when we left, I made it through the parade and festival both, and by the time we got home my feet and legs were so swollen I could barely walk. The really bad part of this is, it's not like I walked for miles or anything, the places we went are only 3 blocks from our home.  I decided to take a warm bath and prop my legs up for a little while to see if it would help, but I ended up having my legs totally lock up on me while I was in the tub, and my husband had to lift me out of it, and help me get to bed. It was a pretty rough evening.

  When I got up yesterday, I was still sore, but I was doing okay. I got the food ready to take to our family reunion and was feeling good by the time we were getting ready to leave. We were at the reunion for about 2 1/2 hours and all hell broke loose. My body decided to take one of it's fits, and I started jerking all over the place.  One of my husbands' aunts that wasn't aware that I had this condition started screaming to get my husband, because I was having a seizure. My mother-in-law tried telling her that I was okay, and to just calm down that I would be fine and it would eventually stop on it's own. Well needless to say, it didn't stop at all. I shook and jerked from about 4:30 yesterday afternoon until about 8:00 p.m. tonight. I feel so bad that I freaked her out like that, but I can't help it. I have no control over my body when it does this. And I do feel bad that it made her uncomfortable, but I cannot let this condition keep me from enjoying my life and my family. After about 2 hours of sitting there listening to her run her mouth about how I should be in the hospital, and how my husband and children shouldn't have to see me in this condition, because it is so upsetting for them, I was ready to explode and so were the people that were sitting with me. My husband and kids are so used to seeing me like this it doesn't even phase them anymore.  It just sucks, that it took one person's ignorance to ruin a great picnic. She got mad because the group of us that were sitting together were making jokes about it. We were saying it was a new dance and a couple of adult cousins came up beside me, and were trying to jerk around like I was and we all thought it was hilarious.

  I tried explaining to her that I am under Dr's care, and they are trying to find out what is going on with me, and I will not stop living my life because I have this condition. I don't know if I got through to her or not, and I really don't care if I did. The way I look at it is this..I am still the same person I always was, I didn't change on the inside. I do not want anyone's pity, I want people to see me for what I am and not for what my disability makes me. And if people can't get past that, then they are the one's with the problem not me.

  Thanks for letting me come here and vent, it does help to get this off my chest.

Sue


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When all else fails, play dead!


All I can say to that is...WOW! It'd take me a few days to calm down after my legs seized up. Even though I am in a wheelchair so most people wouldn't even notice, it'd scare the crap out of me so I'd stay home for a few days. You deserve credit for even going to the picnic...ROUND OF APPLAUSE FOR SUE!!
Now, as for the Aunt who told you off for 2 hours, trust me, you didn't get through to her. She was obviously running off her emotions, with some people it takes longer to work off then others. Leave it for a week, if she still goes off at you, leave it for another week. Get your hubby or one of the kids to talk to her, just make sure she knows you're not going to stop your life because of this disability.


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I Will Be Diagnosed !


Awww Sue I can relate  aggressive people just have no idea what suffering an illness (diagnosed or not diagnosed) is like

Glad to hear so many others at the party understood and didn't cause a fuss, but all it takes is one stupid idiot to ruin everything  aggressive
I hope your feeling ok now ? Feel free to vent all you like, it's good to get it off your chest
 Huge Hug
Sammy



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I am sorry your holiday weekend was horrible... I too struggled my share as far as illness goes this last holiday week, it was not as fun as I would have liked. I am sorry about yours. I hope your doing better and I hope you find some answers soon!  Huge Hug


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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

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When all else fails, play dead!


Doesn't anyone agree with me? Suzie's an incredibly strong woman for even going to the picnic! The Aunt was out of line, but Xue deserves big, hearty congrats from all of us for even making it that far!


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oh I definately agree New... took lots of courage to go out there. I never get out anymore even as we speak my husband went to dinner and movie with some freinds of ours and here I am in bed. The usual. People don't even invite me out anymore .. they know better I will either cancel or not show. What a life huh?


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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
   

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Posts: 232


I agree with ya, i hide away - well not so much hide as can't bear to move. You did so well Sue, As for your Aunt, sorry she kept going on about it, I guess she was scared for you. It would be scary (worrying) for someone who hasn't seen it before. But my family is the same, seen it all, doesn't phase them, well you know what i mean. Glad you had fun at the parade. Hope you get some rest this week.


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