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Patty13637
06-30-2009, 05:12 AM
I want to say thanks to everyone who posts here . I have been a memeber for 1 whole day !!!!!

I was feeling sorry for myself and a little angry because my family will never understand the whole truth about lupus . You cannot unless you have lupus. There is no way to explain how just the touch to your skin can hurt , or the feeling you have been run over by a train .

I get my words mixed up alot and feel like an idiot , they are correctly formed in my head but come out all funny . well I was reading a post last night about others who do the same thing ...well gosh I am not the freak of nature that I thought I was :wacko:

So thanks to all of you who open up and share with all of us .


Patty

debbie-b
06-30-2009, 05:55 AM
I want to say thanks to everyone who posts here . I have been a memeber for 1 whole day !!!!!

I was feeling sorry for myself and a little angry because my family will never understand the whole truth about lupus . You cannot unless you have lupus. There is no way to explain how just the touch to your skin can hurt , or the feeling you have been run over by a train .

I get my words mixed up alot and feel like an idiot , they are correctly formed in my head but come out all funny . well I was reading a post last night about others who do the same thing ...well gosh I am not the freak of nature that I thought I was :wacko:

So thanks to all of you who open up and share with all of us .


Patty

Hi Patty,

That is so funny, I felt like a freak of nature myself, until I read all the other people telling their stories. I don't feel like an idiot anymore.

Debbie

crmj1183
06-30-2009, 06:14 AM
Patty, I agree with u, Im very glad i found this forum. It couldnt have been a more perfect time, Im currently going through a serious flare right now and its tough for me. Ive been crying a lot and Ive been in pain (GI), swelling, and my kidneys are under attack again:grumpy:. So right now this forum gives me something to look forward to.

red246
06-30-2009, 06:16 AM
Patty,

Your post made me laugh & smile! I remember feeling like a freak too. Now when my words come out in the wrong order or I say something that totally doesn't fit, my kids and I just laugh and say "Lupie Lou" is hanging around!

You're right, they will never understand completely. Hopefully they can learn to accept what we tell them. When I told my family that I had to stay out of the sun they didn't really understand. Since my daughter's graduation, which was outside, even though I was under an umbrella - they now understand!

Hope you have a good day!

DrinkofWtr
06-30-2009, 08:25 AM
I can relate to the putting of words into the wrong order, and let me tell you that the students I used to teach would be the first to let me know when I did such. It was really hard when I was teaching. I couldn't explain to them it was lupus because they wouldn't even know what that was, or understand, or even care.

rob
06-30-2009, 09:29 AM
Hi Patty,

Living with Lupus is alot like being in combat, there is no way others could ever understand what it's like unless they've been there and experienced it themselves. Try as they may, my family will never know what Lupus is really like. But, they do make an honest effort to understand, it hasn't always been that way. I'm thankful every day for that.

I used to be the guy everyone went to for proofreading, and I was always the one who was asked to help spell a word. Now, sometimes I'm unable to spell even simple words that I've known since the first grade. Brain Fog sucks. The connection between my brain and fingers isn't very good these days, but, I manage. Sometimes I lose my train of thought in conversations with people, and that's really frustrating.

I have alot of anger because of Lupus, I guess most of us do. Sometimes I imagine that the punching bag out in the garage is Lupus, and I pound the hell out of it for awhile, and it helps. Other times, some of the screwed up words and foggy thinking can be just plain funny. I laugh at myself often, and that helps too. I once was in flare with bad brain fog, and I went to brush my teeth only to discover that I had mixed up the tube of toothpaste with a tube of Preparation H. Toothpaste and Prep H are both useful items, but they are not interchangeable!

So Patty, you are definitely not alone. Take comfort in the fact that you can come here anytime of the day or night and find others like you who really do understand what living with Lupus is like.

Rob

mountaindreamer
06-30-2009, 09:36 AM
hi to all of you newbie "lupie lous" (red, that is a precious way for your kids to learn and accept your disease).

Let me see if i got this right, you all were feeling like "freaks of nature", you found this forum and read all of the posts here, and now you realize that you are normal......hmmmm thanks a lot you guys....It is so comforting to know that our "crazy jokes, stories of stumbling and bouncing off furniture, completely loosing the words we were going to say, (hmm i forgot what my point was).....oh well,,,, you know this is a joke....i am so thrilled that we can help you.....this is where i found help and every day i look forward to communicating with everyone.

Yes, we do have fun, but we are always there when someone really needs us.....i am thrilled to meeet each of you and look forward to sharing lives with you.....even if we are lupie lous....ha ha ha

debbie-b
06-30-2009, 10:25 AM
LOL I have just read what Rob wrote about the preparation H and toothpaste.
About an hour ago, I used hairspray under my arms, both of them, after I got dressed I was wondering why I felt so sticky under my arms. I looked and smelled the hairspray, had to wash it of.

Debbie

Delphinia981
06-30-2009, 11:18 AM
LOL I have just read what Rob wrote about the preparation H and toothpaste.
About an hour ago, I used hairspray under my arms, both of them, after I got dressed I was wondering why I felt so sticky under my arms. I looked and smelled the hairspray, had to wash it of.

Debbie

GIRL! I HAVE DONE THAT, TOO!! Darn us Lupine crazies...everyone to the bunkers!!

Patty13637
06-30-2009, 11:39 AM
Thanks for the smiles today ...I really needed them as I am cleaning :hissyfit: and I hate to clean !


Patty

Angel Oliver
06-30-2009, 05:13 PM
Hello to all the newbie loopies..so glad you found us.I so understand the friends and family thing,they either dont listen or seem not to care,maybe they do but dont show it,who knows.But here...i feel im at home,even when i take the plate into the kitchen and throw the plate in the bin and the food in the sink...here is home,we all do similar funny things.Or like me,i chat to many,then cmpletely forget what they have told me,so im good to tell secrets too....i forget pretty quick lol.Insomnia night tonight,so im ere.You all settle in nicely...we all understand you.

lots of love
Amanda.xxxxxxx

SandyR
06-30-2009, 06:08 PM
I once was in flare with bad brain fog, and I went to brush my teeth only to discover that I had mixed up the tube of toothpaste with a tube of Preparation H. Toothpaste and Prep H are both useful items, but they are not interchangeable!

:) Oh Rob you had me cracking up and feeling sorry for your experience at the same time!

Angel Oliver
06-30-2009, 06:11 PM
Oh Rob,im so tired,sorry i missed that....:) So funny.xx

Danica01
06-30-2009, 08:10 PM
Rob: I remember when you first posted about that experience! I am still laughing :-)

Patty: Lupus is a very hard disease for you and for everyone involved with you. It is hard when the ones you love do not understand but at the same time, I am glad they do not understand, I do not want anyone else to have to go through what we go through. That is why I think the best support group is the one we have right here! Everyone can relate to each other and they really can help get you though the tough times by just listening. I am so happy you found us and you will never feel alone :shysmile: The brain fog is one of those many silly obstacles we must jump over. I have ruined milk b putting it in the dish cabinet and Along with brain fog I suffer from chronic clumsiness!!!!! I run into walls trip over my feet and even find away to fall out of my own bed!!!!!!!!!! See, we all have stories that will make you giggle!!!!!!!!!! I am so happy you found us and you will love the new friendships you create here!!!!!

:grouphug:

rob
06-30-2009, 10:56 PM
:) Oh Rob you had me cracking up and feeling sorry for your experience at the same time!

My father was visiting me at the time, and I was telling him how awful Prep H tastes. So he tells me it could have been worse. I could have used the toothpaste down...

Well, you know what I mean. It was that kind of hot cinnamon flavored toothpaste too-it would have hurt, but at least I would have been "minty fresh".:shocked:

Saysusie
07-01-2009, 10:37 AM
Rob;
Even though I have heard your story before, it still cracks me up!! Thanks, again, for the laugh and for sharing so that others know that none of us are crazy..we have LUPUS!!


Peace and Blessings
Namaste
Saysusie

lucky7
07-01-2009, 01:09 PM
lol Rob!!!:laugh: I can always rely on YOU to put a SMILE on my face just when i need one!!! THANKS AGAIN!!

WELCOME to ALL NEWBIES!!! :yes: Im glad you found us and this is one big happy "freaks of nature" family!! WE are happy to keep em coming!! LOL:laugh:

mountaindreamer
07-01-2009, 02:19 PM
Rob,

i will never understand how you can repeat stories and make everyone laugh all over again....you save little bits and pieces and add to later repeats.....minty fresh - ho yuk, what a vision.

Danica,

you got me beat....i haven't fallen out of bed yet, but the day is probably coming....when it happens, i will just giggle and know that it was bound to happen. By the way, i agree with you....i don't want my family to completely understand my disease, because the only way would be for them to have lupus, and I don't want anyone who i know to go through this agony.

SandyR
07-01-2009, 02:21 PM
Rob,

:) Your father sounds like a pretty wise man! ;)