I want everyone's opinion

[Saephyr]

:erm Yeah once again the topic has come up and this time by unexpected source whom I don't care to mention. :tear

You guys talk to me, read my posts, see me at the club so tell me the honest truth about what you see and hear from me about my health.

I was told the last 2 days I'm just looking for attention, playing it up, exaggerating for attention from men, but I go out to the CC and have fun & NEVER have any issues when I go out to see friends there or get dressed up to go out to visit with you guys...so tell me all about how I thrash around dancing, get crazy and run around, never complain that I need to sit & whine cuz I can't play with the dance floor anymore unless I'm so hammered that I can hardly fuqin walk so I'm in no pain.

Please..I have to send this along to someone special so I want your attention and your opinion about me being a phoney. This is going to someone who's known me for 3 years via a telephone based relationship and he never really sees me leave what... maybe 5 times in 3 years.

Do be as honest as you can...brutally so. Since I'm also ahowing this to my therapist as well. The topper was... "If you are that bad off then you should be in a home since you can't do everday tasks like going to get groceries and putting them away the same day."

Fire away for me and don't hold back a damn thing. =)

[Onyx]

There have been a LOT of times I have felt so bad I couldn't get my groceries put away the same day, especially when I've had a bad 3 day migraine.

I know it's hard not to stress over what people say about you, but there will never ever come a time when there isn't somebody criticizing you about something. If it isn't my kids or my parents doing it it's somebody I'm dating. At times I just have to take a break from those who are doing the criticizing. I know I'm doing my best. It will never be good enough for some people.

Just got to keep doing what's best for yourself and don't let it get to you.

[torn asunder]

i've no need to add anything to onyx' post...

people want to be negative? un-invite them from your life - that's my solution. :erm

[Saephyr]

But...do you ever see me acting up Onyx?

Can I? Am I the acrobat queen of City Club ? He said I never do anythign but sleep.

Ok then how did I just lose 17 pounds then? Sleeping? Try Richard Simmons and Pilates and doing a lot of isolation exercise. nope.. not according to this Dr. B.S. fella who's my dearest friend in the whole world.

WTF...I belong in a home!?!?!?!?!?! I can't say where he should be put righ tnow..it would be cruel.

Come on I need this guys...

Thank you my darling Onyx who indeed suffers some of my verysame pains and helped me a LOT years ago. Always a true friend in you pretty lady...bless you.

[Onyx]

He said I never do anythign but sleep.

Ok then how did I just lose 17 pounds then? Sleeping? Try Richard Simmons and Pilates and doing a lot of isolation exercise. nope.. not according to this Dr. B.S. fella who's my dearest friend in the whole world.

<{POST_SNAPBACK}>

Well I know for a fact you do more than sleep. I think I'm actually more active during my "good" times because I know it's not going to last. I cram all the living I can into the times when I feel well and I have a feeling you do the same.

It's almost impossible to understand how disabling chronic disease can be until you've been through it yourself.

[Saephyr]

i've no need to add anything to onyx' post... 

people want to be negative? un-invite them from your life - that's my solution.  :erm

<{POST_SNAPBACK}>

He says he's trying to help me be motivated !

How is an evil thing llike that supposed to motivate anyone?

Said all I do is sleep yeah that's how I get so much done around my home right? What in hell would I enjoy all these problems for :confused

[Brenda Starrr]

He says he's trying to help me be motivated !

How is an evil thing llike that supposed to motivate anyone?

Said all I do is sleep yeah that's how I get so much done around my home right? What in hell would I enjoy all these problems for  :confused

<{POST_SNAPBACK}>

That's called "motivation?" OMFG. What an asshat. You have serious health issues, for sure. But, you can't let these issues keep you from living! That's not life at ALL.

You do much more than sleep, if I'm correct in my thinking. I've never been inside your home, but I'm sure that you wouldn't live in a pigsty. You care too much for that shit to happen.

And, oh yeah. You just LOVE being in pain. I mean, come on, don't we all? Why the FUCK would we want to feel good.

Your "source" is a real smart person. NOT.

[Fierce Critter]

I've never seen you outside of the club. So maybe I'm not an expert on "Saephyr".

But I've dealt with my share of hypochondriacs in the past. I'm not an expert, but from what I've seen, you don't fit the profile.

I think you need to find new doctors, to be honest. I don't get the impression you're being properly diagnosed & treated.

[Guest Megalicious]

I think you need to find new doctors, to be honest. I don't get the impression you're being properly diagnosed & treated.

<{POST_SNAPBACK}>

Ditto hun.

[pharoh]

Retracted for not saying what wanted to be heard.

[slingerlandstyx]

You do much more than sleep, if I'm correct in my thinking. I've never been inside your home, but I'm sure that you wouldn't live in a pigsty. You care too much for that shit to happen.

Your "source" is a real smart person. NOT.

<{POST_SNAPBACK}>

You hit that one on the nose. She'll not only try and pick things up a little bit, but vacuum if I come over for a visit. We're plenty close enough that she shouldn't even have to think about putting effort into looking good for me, especially if she's having a bad day. But she does anyway.

Cat, I know it doesn't need to be said, (or does it? :blink ) if you ever need anything, don't hesitate to give me a ring. Whenever.

[slingerlandstyx]

Ok babes we talked about this breifly today, and I am gonna talk about this to the party involved.  I will answer this the best way I can, and I will be honest also.

Do I think that your Hypochondriach......Mostly no, but you do tend to try to label everything thats going on with you.  If you have a sneezing fit you say your comming down with a cold....which maybee true, but still When you label everything the way you do, it does sound hypo'ish, but when you have the different issues that you have been dealing with it's probably hard not too.  I don't know because I cannot suffer from the same health problems that you can.

Do I think that your in pain alot of the time?  Yes because I have seen it firsthand.

Do I think you need to be in a home?  No, although I know it does take alot to do the normal upkeep on a house and I would honestly say that you need some extra help.

Do I think your whiny?  Now this is a 50/50 for me.  You don't have alot going on through your day and when I do talk to you about whats going on do a fair share of complaining, but you know how I am hun.  I don't talk about what goes on with me and let it stew untill I explode, which was a couple weeks ago (thank you sweetheart for listening ).  But to me bitching about things you can't change does no good.  And yes sometimes you have to get stuff off your chest and I do want you to still talk to me when you have problems.  And that goes for you guys on the board as well (Open Invitation).

The person and myself will never know whats truely going on with you because we cannot go through the thing you are going through.  I dont' hold anything against you and consider you a dear friend.  We all have our hangups and i don't Judge ppl on the things going on in thier lives that i have no direct effect upon.  Some things in my opinion you just have to look past.  You know your always in my heart Cat and you know I love you.

<{POST_SNAPBACK}>

Al, you are f***ing awesome with words. Couldn't have put it better myself.

[slingerlandstyx]

...

[pharoh]

Woot I'm loved!

[Nienna]

Well I know for a fact you do more than sleep.  I think I'm actually more active during my "good" times because I know it's not going to last.  I cram all the living I can into the times when I feel well and I have a feeling you do the same. 

It's almost impossible to understand how disabling chronic disease can be until you've been through it yourself.

<{POST_SNAPBACK}>

OMG this is so exactly what I feel too. I hate trying to even make others understand. If they are healthy, they can't. Period.

Sweetie.. You, like me, have endometreosis. With that comes all sorts of nasty stuff. You, like me also probably have fibromyalgia and chronic fatigue, because it is a side illness almost every woman has with endo. People like to say we're making it up because sometimes we can be perfectly fine. They don't understand that it depends on our cycle, the weather, what we ate, if we have insomnia this week...

Let it roll off. They don;t get it and it sounds like they don't want to. *Huge hugs*

[creatureofthenyte]

I have to respond to this issue. I have first hand experience as far as witnessing the ailments that Cat is dealing with.

I was a guest in her house on from May 7th 2006 to May 15th 2006.

I can tell you quite clearly that she is NOT a hypochondriac. Cat is NOT MAKING ANYTHING UP about the illness she has, or any of the related symptoms or side effects.

She does NOT sleep ALL the time. We went out to eat, we went grocery shopping, and Yes she pushed the cart all by herself. We went out to eat on 3 separate occasions. We sat and watched movies together, we went outside and played with her dog in the back yard. Yeah she has periods of time when she can just go-go-go, but then she also has times when she can't do much of anything because she is dealing with immense pain.

Cat is doing the best she can to live her life with this insidious illness. I think she is one of the strongest people I know. I personally don't know if I could have the strength and determination she has, if I were faced with similar circumstances. Her strength inspires me and makes me feel lucky to know her.

She never asked to have this illness. If I could take the illness and pain away from her forever, I would do it in a heartbeat. I haven't known her for very long thus far, but I can tell already that she is genuinely a Kind, Warm, Caring and beautiful human being. She is doing the best she can to not let this illness stop her from living her life.

So, once again I state for the record, that unequivocably, Cat is NOT a hypochondriac.

[Saephyr]

With true tears in my eyes from reading this so far I never had hoped to hear such wonderful things.

I do however need for you who have given me your time, to speak on when you have seen me sick and when you can tell I have had a hard time or if you think I'm trying to get affection just due to feeling one of my strongest ailments...depression. :tear

I have good and bad times. i share as many god tho0ughts as I can with you all cuz you make doin time alone a lot more fun. ido know how to read, I do clean as Styx said, I do whine as Pharoh said and I do actually do things for myself as COTN said when he was here.

Folks they are saying that they know you care for me but am I lying? Am I exaggerting the symtoms? Am I masking a small ache or pain by saying "yeah just bleeding like a stuck animal here...hows everyone doin?" and that sort.

I am handicapped as I have a neat blue parking VIP sticker :grin

The MD and the Neuro I was seeing 3 years ago deemed this a fact. It was never my intention to stop working. I was forced to. I LOVED my job. Honestly talked about it so much that people were teling me to deflate my swollen head since i got my government job finally! WOULD I GIVE THAT UP FOR SOME LAIM WEFARE STAMPS FOR FOOD AND NOT TO MENTION NO, ADN I MEAN NO PAYMENTS OF DISABILITY! Yeah, I live off my folks! :tear Lovely eh? They can't retire cuz thier daughter at 35 has been laid out by diseases for unknown reasons. My own Da, whom I call Lurch since he never speaks, sure has a LOT to say about this subject when he had to take me to the fuqin ER because on Xmas day I could NOT WALK on my own. My Osteo arthritis, fybro and fatigue all attacked me at once and reacted against a steroid treatment so I could NOT move at 1st but then got up enuff to call and say hey I need to go to ER right now.

Raw truth about what you think of my sickness. That's what I want. What have you seen? Heard about with me? Heard other people saw? Pharoh thought I was totalled last time I was at CC. lOL I was falling over cuz my legs don't work right and I was in pain...then my damned fatigue whatever it's called drove me to loking like a brown bottle drunk!

Creature wasn't kidding. He was never here b 4 and he saw things that made him sad for me. He however seems to believe that I was literally having issues fro what he witnessed.

Pharoh saw me fall out from a migraine b 4, so has Froyn, so has Bean Water when we went out to eat, I showed off my bellybutton scars from my Endo exam that Nienna & I share and it's literally KILLING US every single day! KILIING US. If I am exaggerating at all Nienna please do correct me and I respect your imput if you can give a few more details then fine. THIS IS GOING TO AC AS A TESTIMONIAL to my welfare worker, the courts, and this friend of mine who has reached his breaking point at tolerating how much MY illness hurts HIM. My family has already been in therapy!!! My sister threatens Dr's and nurses of all walks if I'm unattended. This is not a hypochondriac talking

Ask DBK how it feels to be sick and be so obvious that you get stared at. Then when folks see me and see no chair, no walker, no cane they get MAD at me cuz i have VIP parking and they don't! What a joke. Hey if they want the black discusting mass growing in my guts they can have it or any damn ting else they want.

Folks...I'm not getting better.

I'm getting worse when tell you that you'll be on Morphines soon what the hell do you think that means. it's getting MUCh worse. Right now, I'm on OPIUM all fkn day long. Yeah I'm a phoney. If I drop over dead sometime then maybe these folks will buy it eh? Anyone got any tetrodotoxin (zombie dust) so I can fake my own death to get some REAL attention :woot: I'm sick of this but you can help me. Write. Write anything you feel or see. Be totally hardcore honest...what else could possably hurt more than my best friend chopping me down that way.

I'm askig for more please.

i love you so much for what is here so far. please spill your guts.

Hey memeber that guys...movie nite... I run and barf and just sit down to finsh the flicks?

Brian knows I did. =( Wasn't I toting my cane that week too Creature?

Type my true pals and that way I can make these people read what you've said, seen and heard. You can help me so please do.

[FarrIL]

When I broke my hip my Junior year in high school, everyone in my 3rd hour class, save for...... oh... 4 people, thought I was faking. Sure, that year, my marching band went to state finals, and yes, we had a moonwalk at our all-night party and yes, I was INSIDE that moonwalk, but guess what I was doing?

Laying down. Resting. Talking with 3 of my friends, who happen to stick by me through it all.

People were trying to find any and every excuse to say "Tara's faking".... and never say the whole story. My math teacher asked me if I had ran to the snack line for lunch, one day, because he had heard someone talking about it and I said "It wasnt me." Dude, I may have been off my crutches but I still couldnt freaking use the damn stairs!!

As for you, Miss Saephyr, I have seen no signs of you faking your illness. And you certainly dont need to be staying at home. Even sick people need to move around. One thing I distinctly remember was you picking me up to hug me, I do believe it was at Spook's birthday. And I was thinking "YEAHY!! Lady Saephyr's here!! She's feeling better tonight!!"

I havent seen you dance, so I dunno about you thrashing about. Hell, even when my cramps are pitching a fit, I'm still trying to move around in some way or another.

That's what I've seen glimpses of you doing. Moving aroud so you're not bored.

And if anyone dare say that you're faking your illness, how about you tell them to either say the slander to your face, or lest they can bite thine tongue.

[AstralCrux]

While trying to understand the endo I came across a good point that was made. If a man suffered from the symptoms you have the treatment would be taken much more serously and the treatment options would be different because society tries to protect male reproductive systems. I should get you that book, it was funny! In any case- doctors will tell a female it is all in her head, it's a social stigma.

I've not been close to you for very long, lord knows it took a while for me to come around, but what I have seen of you I know you struggle. When Jeremy and I came over I'm not sure if it was from the meds or pain, but you had a hard time trying to keep your conversation straight because you had to really struggle to keep a good focus. You try to make visitors to your house feel welcome, despite the shape you're in. Then I got to see you the next morning when you were vibrant. Seeing a person with the spirit that you have makes it seem like nothing is wrong, but that isn't true.

Just because nothing is wrong at the moment and you aren't struggling through your pain 24 hours of the day doesn't mean you don't feel pain. You have a magnetic soul and people just want to expect more from you because they see you try so hard. It isn't fair to you though for someone else to set your expectations, you set those for yourself. Don't let anyone else tell you how to run your day! You're doing a great job!

[Hellion]

:cheerful

Cat I have known you for a long time,and I have always understood your health issues.In my opinion you have been dealing with alot of problems and I wish I could do something about it,but I cannot.Everytime you are up at the club,your always trying to have a good time,and you like to drink a few,so you can forget about the pain,and continue to have a good time.I see nothing wrong with that at all.I just hope someday that the pain you are dealing with will go away and you can enjoy life even more.So just keep posting on the board,and show up at the club when you are able too.If you want to get a hold of me,just call and I will get right back to you.I hope you feel better tomarrow.take care,and hope to hear from you soon. :cheerful

[Nienna]

The most ironic thing here?? I've said this before: A hysterectomy will pretty much cure both me and Cat.. and they won't give it to either of us. Why? We have no children. They fail to recall the disease also basically makes un infertile. How's that for stupidity??

[JaneDead]

i don't know you so i can't say anything either way. i do however wonder; why are you looking for approval or attacks? why does it concern you so much with what friends, family or "dgn" thinks about you? what do you think about yourself? that is what matters. if you are happy with you- then be you. and be happy with whoever that is. if you are not happy- then do what you must to improve your life for you. not anyone else.

(sorry if i repeated anything anyone said already as i didn't read any replies after your inital post.)

the attacks are going to make you hurt and defensive

the approval is going to make you think other people are just assholes.

it shouldn't be about that. it is only about you being true to yourself and taking care of yourself.

i mean really - who are the people of dgn to tell you how you are or how you should be anyways? don't look to anyone for approval. you will never be happy that way.

[Saephyr]

I am not seeking approval.

I wanted testimonials re: my being handicapped or a simple out of control hypochondriac. That is what I sought. I have a friend who says I need to hear some TOUGH LOVE from the people I speak to most often. he told me to ask what they thought specifically, so what the hell I did. If they didn't want to reply they didn't dear.

Sorry you must have mistaken my meaning for the initial thread... but thank for the 2 cents

[JaneDead]

I am not seeking approval.

I wanted testimonials

<{POST_SNAPBACK}>

i would think "testimonial" is pretty much like an "approval" though

i didn't think you were necessarily looking for approval but you are either going to get approval or rejection by asking the questions you asked here.

[kellygrrrrrl]

From what I have read from you Saephyr, is that you seem to be a fun loving girl. You don't really hold too much back.

To me there is 2 sides (or more) to people. Fun side, and rest side.

To have fun you need rest. To rest, you gotta work yourself up. and around that goes.

Even God rested on the 7th day ... :erm

AND no pain no gain right?

You have your way of dealing with pain. You have your own tolerance to pain. Nobody has the same feelings when it comes to pain and pain management.

You do what you need to do to have the quality of life you know?

With all the hype on disease and cancer, and blah blah blah, who wouldn't be a "little" paranoid. You know? I would try being just more health concieous (sp) or more focused on staying well than to dwell on what is wrong. The mind frame plays a big part on the the bodies health.....Ive seen this 1st hand.

Don't let anyone bring you down.