Heading to PA this morning!
#248852 - 02/27/06 06:09 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Wish me luck for no traffic!! My fibro appointment is for 3pm, so I'm heading up at 11am in case I run into any construction, etc. I've broken out in acne across my forhead from (I think) one of the supplements, so once the doctor sees it and makes a recommendation, I'll be trying in earnest to get rid of my new zit friends. It'd be SO NICE if I could just break the gravitational pull of puberty!  
Other than that minor hiccup, the treatment's been going slowly so far. I know I'm not supposed to expect overnight success, but I did get my hopes up for a 180 degree turnaround. At least I get an IV today with their special fibro concoction. It perked me up last time, and I can use another!
The best part about going up is talking to all the wonderful people who also have this disorder. It's so affirming to see that I don't have to stay quiet about what's going on with me, because there will be a room full of people suffering much in the same manner as I am.
Melissa and Avidan, can't wait to see you! Avidan, be warned I'm very, very tall. LOL!
~nelly~ 
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It's also time to lay down your bets for the Lyme disease pool!! I find out today for sure if I have it or not (maybe I'll buy a cupcake with a tick on it to celebrate?) 
Keep in mind when you're figuring odds that my BF of 10.5 years has it, our dog has it, BF's mother has it, and the county where I live is 2nd behind New Jersey for pet incidents of Lyme (don't know the state with the most human cases-- CT maybe?) I figure it's 50/50 that I've been infected.
The weird thing? Other than taking bets that is.  I won't be upset if I do have it. It'll be just another piece of the puzzle, and maybe BF will give me cred for some of these pains I've been complaining about.
~nelly~ (Disclaimer: No actual bets will be covered by Nelly, NellyCo LTD, or Nelly Corp. Int'l and its subsidiaries)
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My prediction
#248855 - 02/27/06 06:32 AM
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melitami
Reged: 02/23/04
Posts: 1213
Loc: Ewing, NJ, USA (IBS-D, Vegetarian)
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I've got inside info....aka knowing that chronic Lyme can mimic or even cause fibro....so I'm betting you do but it's not the only piece to the puzzle.
See you later today! Hehehe, can't wait for Mel and Nel time tonight!
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Melissa
Friendship is thicker than blood. ~Rent
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Mel...
#248856 - 02/27/06 06:56 AM
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Computr821
Reged: 12/02/04
Posts: 445
Loc: University of Pennsylvania, Philadelphia, PA/ Baltimore, MD
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Did you get the e-mail? Just wanted to check.
Avidan
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Why'd you have to go and make me so constipated?
--'Weird' Al Yankovic, "A Complicated Song"
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I hope you don't have any traffic and your appointment goes well!!
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Uh, OK, though I'm not particularly short either (I'm like 5'10). Looking forward to seeing you (and Mel!) later today.
Avidan
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Why'd you have to go and make me so constipated?
--'Weird' Al Yankovic, "A Complicated Song"
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Melissa
Friendship is thicker than blood. ~Rent
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Excellent! -nt-
#248864 - 02/27/06 07:33 AM
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Computr821
Reged: 12/02/04
Posts: 445
Loc: University of Pennsylvania, Philadelphia, PA/ Baltimore, MD
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Why'd you have to go and make me so constipated?
--'Weird' Al Yankovic, "A Complicated Song"
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Re: Good Luck!
#248888 - 02/27/06 09:57 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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It sounds probably that you do have Lymes! I still haven't heard if mine has come back yet or not. I figure I'll call them tomorrow if I don't hear anything else from them. Like you said, it'll just be one more piece to figure in! You guys have fun tonight, I'm jealous I can't be there!  
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Taking it one day at a time.....
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Hoping you don't have it! I've had it. Not fun!!!!
Have a great time in PA!
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~~~Lisa~~~
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Wishing you an easy trip and a good doctor's appointment.
Quote:
It'd be SO NICE if I could just break the gravitational pull of puberty!
Lol! I feel the same way sometimes - especially on those days when my aches and pains really feel more like growing pains.
Have fun tonight!
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Why'd you have to go and make me so constipated?
--'Weird' Al Yankovic, "A Complicated Song"
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Hey everybody! I'm reeling from the sheer volume of my test results. The doc has bombarded me with paper and Mel is trying to guide me through it. We've completely forgotten about our other plans to see Avidan and we've been having the same conversation for the last two and a half hours. And we're totally not done yet.
I tested positive for the same thing Michele did, the bacterial pneumonia, plus a host of other bacteria and viruses. I am indeed playing, well, you know, host. I tested big time positive (4x positive) for one nasty marker of Lyme, but one out of 6 does not Lyme make per se, so he's reffered me to a specialist.
OK, more later. Gotta go rest my head. My big, information-filled head. 
~nelly~
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I was kinda starting to wonder...No worries, I understand. I sent Mel an e-mail asking if you were still around tomorrow morning if you wanted to catch breakfast or something since I've got no AM classes. Let me know; Mel has my address.
Avidan
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Why'd you have to go and make me so constipated?
--'Weird' Al Yankovic, "A Complicated Song"
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Wow! Sounds like a lot of info to get through. But more pieces for the puzzle, maybe?
Take it easy and update when you can.
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Nelly
#249044 - 02/28/06 02:21 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Rejoice in having HAD tests, okay? That is GOOD.
Btw, what tests did you have for Lyme? I've never been tested for it and I grew up in the New Forest (a national park here) with dogs and horses so you'd THINK it would be on my docs list, but no. 
Hoping you're doing okay! I've missed ya!
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Re: Nelly!
#249075 - 02/28/06 08:10 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Hey Girlfriend! I guess we must taste good to all these stupid bacterias and viruses!!!  I assume you're going to get a whopping dose of anti-biotics as well?! I'n on doxycycline and it says not to take it with immodium at all, vitamins, minerals or antacids within two hours of taking it because it can interfer with the absorbtion of it. I'm having a tricky time "timming" all my pills!
I called but my Lymes and several other test results weren't back yet so I'll have to wait a little longer to see if I can add something else to my list!
Hang in there, we'll get all this crap killed dead and hopefully we'll start to feel better!
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Taking it one day at a time.....
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Now they can plan a course of action, right? I'm sure it's very scary and all but I am hoping you'll get a load on antibiotics to kill those nasties in you.
I'm glad you have such a great friend like Mel to talk all this over with.
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Oh Nelly!!! *hugs* How are you doing? And Mel...I'm SO glad you are there for Nel! I'm glad you tweo have each other
Nelly I'm gonna e-mail you...only write back when you get a chance. I love you girl *gentle hugs*
Sarala (Ruchie)
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Formerly known as Ruchie
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Hey Sar,
Had a really hard time when I came back when I tried to explain the test results to BF. I ended up weeping when he told me all I needed was exercise. Gotta take a moment. I'll come back when I can get through it. What a jerk. I think he's really overwhelmed, but it was a bast^rd thing to say.
~nelly~
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Butting in here to say NOT THE EXERCISE ADVICE AGAIN?! Tell him you know he's overwhelmed, but he needs to think about how overwhelmed and hard this is for you because it's happening to your body.
POOOOOOOP!!!!! Okay, I really wanted to use a few other words here, but this one will have to do in this forum.
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Ugh!
#249264 - 02/28/06 04:52 PM
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melitami
Reged: 02/23/04
Posts: 1213
Loc: Ewing, NJ, USA (IBS-D, Vegetarian)
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Really busy with work, but wanted to reply to you really quick and say to your BF "Because exercise cures chronic viruses and infections? Like your Lyme disease?"
*HUGS* Boys suck. (No offense meant to any members of the gender present, as the guys here on the Boards rock!)
I'm just an email or a phone call away if you need me, Nel!
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Melissa
Friendship is thicker than blood. ~Rent
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If a person isn't chronicall ill...they just don't understand. Have you read your bf the spoon theory? Can he join BYDLS.com and get support there...it sounds like he needs it! I know hubby loves me...but he has no idea what to say to me. He just leaves me alone to deal. Sometimes he literally goes away (bike trips) just to get away from it all. It's hard *hugs* I'm truly sorry that this is all happening to you Nelly....you deserve health and happiness and understanding people in your life...
I love you...sending you loads of tea, chicken soup, and whatever brings you comfort *more hugs*
Sarala
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Formerly known as Ruchie
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Nelly
#249358 - 03/01/06 08:30 AM
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It makes me mad that your BF isn't being supportive. He should know how super hard this all is and that you need comforting not more garbage about exercising. If you felt well enough then you would try it. Doesn't he get that you hurt and feel unwell???
I personally believe that one shouldn't exercise if they're sick or feeling pretty unwell. I believe that it negatively affects the immune system instead of helping it out. I say if ever you feel great, go for a walk with your doggie, but I don't think you shouldn be joining a gym anytime soon.
Tommy and I are with ya and you have our support.
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I just need to hear it from you guys because you KNOW. Ugh, it's so frustrating getting through to him. I told him, "Would you make a person with MS exercise? How about Parkinson's or Lupus? They prescribe Parkin's drugs to people with RLS, are you saying that instead of taking those I should go jogging?"
He doesn't believe that exercise can make people with auto-immune diseases feel WORSE.
And the way he appologized? "You know I'm not the world's most compassionate person." Yeah, and I'm socially detached, but I still manage not to stab him in his sleep, and I don't ask for a prize for that or anything.
So time for round 2, this time with my mom. I get to explain all my lab results to her now, so deeeep breeeeath. Wish me strenght, I'll let you know how it goes.
~nelly~
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MEN! I understand where you're coming from though, Will isn't the greatest when it comes to chronic illness either! However, he can look at me and tell when I'm really not feeling well and he tells me to take it easy. Will is the technical kind of guy so I find it best to find technical medical articles on the crap I've got and email it to him to read. He seems to believe the computer more then me sometimes! Aw well, whatever you gotta do to get it through there heads, right??!
I hope it goes better with your mom. I at least get some sympathy there as my mom is chronically ill as well. Do know that many of us here, including myself, DO understand and no, exercise isn't going to cure us!
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Taking it one day at a time.....
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WHAAAAT?!?!
#249394 - 03/01/06 10:41 AM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Quote:
. . . he told me all I needed was exercise.
HUH?!? How old is this guy? He's your BF?! Okay, I'll keep my mouth shut -- only 'cause he's your BF -- and you gotta know this ain't easy for me!
What's the next step, Nelly? (After throwing the BF out, of course.....)
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Nelly I am sorry that BF isn't being supportive. But know that we all are! Sometimes people just have a really hard time dealing with other people's health problems. We have all dealt with that with our IBS. **hugs** I hope that he comes around and if not give him a big boot in the a$$!! 
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The BF
#249405 - 03/01/06 10:50 AM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Please tell me he regrets what he said. Please. To explain himself away by saying, "not the most compassionate person" doesn't cut it.
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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It drives me insane when I have a migrane and a neck massage would help immensely, yet he gets mad if I ask for one, but he'd never give me one on his own accord - he'd never think of it. He NEVER does helpful things unless asked/begged. SO frustrating.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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--------------------
 
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I just want to say I think that is totaly unacceptable behavior. (I would say more but I can't bring myself to say what I really think...esp. in a public forum!!!) You both deserve WAY bettee than this! *hugs*
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Formerly known as Ruchie
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My BF is the same with massages. He doesn't touch me. I ask him to rub my shouders and he looks at me like I'm covered with bugs.
~nelly~
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I rarely get angry but MAN what is wrong with this picture?!?!?! Nelly! This isn't right? Please tell me I just mis-read what you posted. PLEASE??
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Formerly known as Ruchie
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Alicia
#249530 - 03/01/06 02:19 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Does hubby ever ask YOU for a neck massage or expect compassion for him at any time? Do YOU do helpful things for HIM? He needs to know that it's not all one-sided. How would he feel if the shoe were on the other foot and it was HE who was empathetic while YOU "never think of it"? Have you ever discussed this with him? Does he realize how important it is to you? Maybe he just doesn't know. Remember he's a male; they ain't got a clue -- unless we give it to 'em.
(Sorry guys.)
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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I give give give give give and he takes takes takes takes takes. That's the way it is. He knows how important it is to me and how baffling it is to me when another human being has an opportunity to help another that they wouldn't be thrilled to do it. That's the way I am - but not him.
That doesn't mean he's not loving and sympathetic and understanding - because he's all those. He just can't put another person's shoe on. He's extremely loving and patient with me - although he simply cannot understand what I'm going through. Strange, eh? He's one of the gentlest, soft spoken, loving people I've ever known, yet he has no empathy. Strange. If you have an answer, I'd love to know it.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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My husband is loving, adoring, gentle, soft spoken, patient, family centred, understanding, yet he has NO empathy whatsoever. He is almost RUTHLESS. He simply can't put on another person's shoe. I can give and give and he'll take and take and it will never occur to him that it would be nice for him to do something nice for me. Strange, eh?
I just don't get it. To me, the greatest gift is being able to help another human being. That's why I love being a moderator on these boards - it's my soul's work. It's fulfilling and makes me feel whole and helpful.
He's extremely technical and analytical - a born problem solver. It's his job to assess a situation and give practical solutions to a problem. But when it comes to him DOING solutions, DUH!!!!!!
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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That's terrible! The night I had my test for Crohn's Tommy gave me a really nice massage without me even suggesting it.
I think some guys just don't get it though. You all deserve all the massagess in the world!!!!!
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Nelly -- you better tell your BF that you're quite the catch and just *might* decide one day to get someone who can empathize and be there for you. NO JOKE.
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Alicia
#249597 - 03/01/06 06:02 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Ya know something, Girlfriend? I'll be willing to bet that hubby had it good as a youngster while you did not. I think that we become caring and giving people when we have to work for it as children. It sounds to me that hubby never had to reach out; it was given to him. He's a very fortunate man.
That said, I wouldn't trade places with him. Cherish your loving, caring, emphathetic characteristics. They're what make you special.
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Actually, I had a wonderful, loving, nururing childhood with a great family. We never had money to throw around, but we had everything we needed. However, I suffered greatly at school because of my undiagnosed bipolar and OCD. I was the classic overachiever and hid everything. So yeah, I had major issues. My hubby comes from a great family, too. They're very fa
mily oriented, church going folks. I don't get it any more than you do. (or don't).
yOU'RE very insightful and darn good lookin' too! Beauty and Brains!
XOXO
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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Nelly, Wow, that doesn't make sense to me. I would think he
would jump at the chance. But then again I haven't had a GF in
over 20 yrs., could be just my outlook. You should let him
know he doesn't know how good he has it. -Bob
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<img src="http://www.math.mtu.edu/~rwkolkka/BritPicA.jpg">
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Do you girls pack your hubby's lunch? Or does he have a brief case he carries? If not, leave him notes in his car! I'd get a pack of sticky notes and write on them "Today is a good day to buy my wife/gf flowers!" Or "Today my wife/girlfriend needs a massage" Or "If you don't do something nice for your wife/gf today, she's going to boot your arse out to the curb!" Ok, joking with the last one, kind of, but you get the point and maybe he will to! I know my hubby needs a figurative smack upside the head every once in a while to remind him of these kinds of things!
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Taking it one day at a time.....
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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You nailed it on the head, HS.
~nelly~
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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Aw Nelly
#249718 - 03/02/06 12:41 PM
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Stephie
Reged: 03/10/04
Posts: 2696
Loc: Vancouver, Canada
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Hey Nelly,
I just read through this whole thread and I think it's absolutely rotten the way your boyfriend is reacting.
On the one hand, I agree that most people who don't have a chronic illness will never be able to understand and be able to properly empathise with what we are going through (or what you seem to be going through on a few counts!) and that a lot of times, men just want to be able to fix things. I guess it's possible that he figures if he feels groggy, and feels better after going for a run than that's how it should be with you too...
BUT (but!but!but!) the other stuff, about passing it off with the "not the most compassionate person" thing and all that, that's ridiculous. You can't notice something bad about yourself and then just use that as an excuse! If you recognise it, that means you should be ready to CHANGE it!
The comment about him not touching you, and looking at you like you've got bugs on you really bothered me. There is not being empathetic, and then there is just being cruel... If your boyfriend looks at you like that, how can you have intimacy and comfort and and the warm and fuzzy stuff that can help you get through the times that aren't so good?
I do want to give him a proper smack in the head, because I've seen pics of you and you are very lovely and there is no reason you should have anyone looking at you like that!
I'm glad that you've got your test results and you can start trying to make plans or whatever the next step is and hopefully start to feel better!
Keep us updated, I'll be checking in to see how you are doing!
**loads of hugs**
Steph
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~~I'm not crazy, I'm just a little unwell-I know right now you can't tell~~Matchbox 20
IBS-D,pain.
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