It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Fibromyalgia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 06-07-2004, 07:34 PM   #1
Junior Member
 
Join Date: Mar 2003
Location: Houston, Tx, USA
Posts: 20
Beary Tired HB User
Angry If I am going to be labled, souldn't I have copyrights!!



Just reading about how people seem to have "Their" opinions on how we should look, what Meds we should take, how we should feel and I just wanted to say "I am surrounded by idiots". Most of my family have nothing better to do than to critisize me. You don't see me in their arenea, saying stuff like "man you put on the weight" or your really looking old, would you like me to purchase some wrinkle cream for you. They don't feel the need to research what I am going through. I have spent the past year feeling like the "Fibromyalgia" defender, thus I have lost a lot of relationships. I am tired of all this stereo typing. Yes, whom ever said "If they had to spend one moment in our bodies, these non-beleivers would be popping pills."

I take what the doctor prescribes, which really doesn't even touch pain and now I have become a lable "A Pill Popper". If I take just plain Advil...guess what, I am a pill popper. I soooo sick of having to defend having to the meds in the first place. I have been diagnosed 4 times by 4 different physicians who have concluded that I have Fibromyalgia (one of the physician was working for my long term disability insurance company), I don't think that "we" should have to defend ourselves from these non-fibro persons.

Please forgive me but I need a little ventalation from this stereo typing!!!

 
Sponsors Lightbulb
   
Old 06-08-2004, 05:38 AM   #2
Senior Member
 
Join Date: Apr 2004
Location: Fond du Lac, WI
Posts: 250
typingterror HB User
Re: If I am going to be labled, souldn't I have copyrights!!

I hear you loud and clear. When we first are diagnosed family/friends are very sympathetic but they have very short-term memory when our situation does not go away immediately. We originally think we have strong support from then. However, they very soon start with degrading remarks if we happen to mention something we are trying in desperation to alleviate some of the pain. What had been your support takes a complete turn around and starts depressing you further exacerbating our symptoms as we cannot forget the snide remarks. In desperation you still try to hold on believing against all odds that they will come around. Finally we get out of our fantasy mode and reality sinks in and as victims we realize that we must make a decision to protect ourselves and cut ties and put our strength into personal survival rather than conflict. Pardon me, I have to pop a pill to face another day of struggle. (TT)

 
Sponsors Lightbulb
   
Old 06-08-2004, 06:50 AM   #3
Senior Member
(female)
 
Join Date: Nov 2002
Location: Horicon,WI , USA
Posts: 274
DecLady HB User
Ain't that the truth...

Quote:
Originally Posted by typingterror
I . Finally we get out of our fantasy mode and reality sinks in and as victims we realize that we must make a decision to protect ourselves and cut ties and put our strength into personal survival rather than conflict. Pardon me, I have to pop a pill to face another day of struggle. (TT)
Boy, this hit me this morning! I think it is the way to survive something as seemingly ridiculous as fibro is! I try very hard not to defend the fact that I have an illness to most people anymore. Once in a while there is someone who really never heard of it, and if it is someone who I know I will keep interacting with, I may explain..or I may just give the "like arthritus" explanation. But, my reality isn't theirs. I would like them to get out of bed and feel like me for a week....or work outside and then not be able to lift up their arms for the rest of the day. So..I have decided ( with hubby's help and support) that if you don't like it that I am sick..stay away...attitude!
I cannot make this go away....and I HAVE explored solutions....and I DON'T owe ANYONE explanations. So THERE.

 
Old 06-08-2004, 08:25 PM   #4
Junior Member
 
Join Date: Mar 2003
Location: Houston, Tx, USA
Posts: 20
Beary Tired HB User
Angry Re: If I am going to be labled, souldn't I have copyrights!!



More venting and more labling.....I am sure that this Board is the only group of people that can truely understand what I am going through (except my sweet husband). I called my Dr. and he wants to cut me back on my meds....like I said earlier, I don't take much...cut me back Doc, I think your the one that needs to be cut off and replaced. You know what I find an Oxymoron, is that we need some strong, and yes sometime meds which can be addicting ( and by the way...why do they make these meds if they don't want people to tke them...another time with that question)...anyway to deal with this horriable pain and these DR, family, friends sit back with their healthy bodies and judge us like we are in the same group as drug addicts. I want to scream but I probley make my head "Pop" right off my shoulders!!! I am very careful about what I take and each pill is analyzied, do I really need it. I feel like these people look at me like I need rehab.

Sometimes, I feel like walking around with a smug attitude (if I could gather the energy) and every time someone says something about what I put in my body, maybe a good mirror in their face would shut them up. Example: Yes I know I have to take a lot of meds, so when do you plan on having your 3rd chin removed or isn't time to get your manners checked our, just soooo tempting.

Question: Has anyone had problems with their Pharmacy? I am in there so much, they to watch me like a hawk. Well, if my "Great" DR would prescibe more than 20 tabs at a time I wouldn't have to know their judgemental ways so well.

Thanks again for listening...

 
Old 06-09-2004, 07:54 AM   #5
Inactive
 
Join Date: May 2004
Location: Western Colorado
Posts: 457
taurus3 HB User
Re: If I am going to be labled, souldn't I have copyrights!!

Hi Beary!

All I can say is ditto to everyone. And AMEN to the sister who decided not to give a crap what others think anymore or defend herself. I just got there in the last few months. Like TT said everyone is really supportive until you've been out of work for two years and leave the house only once a week.

I have very healthy friends who say things like "you should come, it would be so great to see you." Well since I've told you five times this month I can't drive right now maybe you could get your lazy healthy *** in the car and drive the ten minutes to come see me.

I've never gotten any grief from the pharmacist but my doctor also gives me 30 days at a time of codeine and flexaril or soma. I am lucky enough to be able to take much less but I get my refill every 30 days, need it or not, so I don't have anything "cut back". I have a stockpile in case they ever give me a hard time or my doctor is out of town.

If taking one codeine and flexaril per day makes me an addict than let me be guilty.

As far as healthy people, let's see who they come crying to when one of them is struck with something.

TTFN - Andy

 
Old 06-09-2004, 03:59 PM   #6
Inactive
(female)
 
Join Date: May 2004
Location: California
Posts: 35
kalishreya HB User
Re: If I am going to be labled, souldn't I have copyrights!!

Oh, my goodness, can I ever relate...*hugs* to everyone. I remember being in tears because my formerly supportive brother said, "She's just lazy and doesn't want to do anything with her life...there's no such thing as fibromyalgia." *No one* in my family even offers to help. True, I am extremely independent and before the fibro, it was always "I can do it myself!" which just makes fibro that much more painful (emotionally as well as physically)...but...none of them seem to even care that I'm in crippling pain every single damn day. Well, my husband cares and wishes he could do something to help, but his idea of a back massage is squeeze a few muscles for less than a minute and then say "Did that help?"...he has no clue. And he *whines* whenever he stubs his toe. I want to tell people not to even talk to me about pain, because they have no idea what real pain is...not to mention all the other crap we have to put up with. Fibro messes up every body system...non-fibro people just can't believe something so widespread can be real. So, yeah, I have no real support system aside from my stubbornness and online friends. I do have an appointment with a new doctor tomorrow, who I've heard is good, so here's hoping I get treatment after 6 months of nothing! -Kali

 
Old 06-09-2004, 08:07 PM   #7
Senior Veteran
(female)
 
Join Date: Feb 2003
Location: Tx
Posts: 1,125
Jenetti HB User
Re: If I am going to be labled, souldn't I have copyrights!!

Same here. I really dont care anymore who believes what. If they dont want to come visit me , hey stay the hell away. As long as my hubby, son, parents, siblings know im ill thats all that matters to me. Sure there are times when they ask, like son, do you think you can come visit me on so and so day?? I have to remind him, DEPENDS on how im feeling and I will get back to you. You know id LOVE TO VISIT you but i have to listen to my body. That reminds him again that i live my life on a day to day basis.
Im sure it gets tiring to them all to keep hearing me say i cant do this or that, but at this point i have to watch out for myself. I am just so blessed to have a hubby that understands im ill and im sure even he doesnt understand the amount of pain one goes thru. How can they??? Ive lost so many "friends" over this. You know, i couldnt make it to their party, or their luncheon or visit them like i used to, so in that case i say their loss. One thing i try not to do is feel sorry for myself, (although once in a while you cant help it).
THe part i hated, was when the inlaws who didnt/dont quite understand, kept asking when theyd call, "are you STILL sick?". Excuse me, STILL SICK?? This is an everyday thing, not something you "get over". After some discussion, lol, they do NOT ask that question any more. We have to stand up for ourselves and educate these people on this illness.
Please take care sweetie,
Love and hugs,
Jen

 
Old 06-09-2004, 09:06 PM   #8
Junior Member
 
Join Date: Mar 2003
Location: Houston, Tx, USA
Posts: 20
Beary Tired HB User
Re: If I am going to be labled, souldn't I have copyrights!!

I am so glad to hear that others feel the same way (not that I want you for anyone to hurt like I do). Today was an alright day. I have read so much about Fibromyalgia and there are many patients that have to use even stronger meds then us, such as Oxycotton and Morphine Patches. The material that I have have read (which is almost everything out there) also stated that Fibromyalgia is even more painful the R.A. I don't know because I don't have that yet, but it does run in my family so I get to add joint pain to my soft tissue muscle pain.

I am NOT a wastebasket illness, I freakin hurt!!! I need to hear from all of you because I feel this message board is the best way for me to feel like I am not alone.

Take Care!!

 
Old 06-10-2004, 07:30 PM   #9
Senior Member
(female)
 
Join Date: Nov 2003
Location: PA.
Posts: 160
tam821 HB User
Re: If I am going to be labled, souldn't I have copyrights!!

I just wrote a few days ago to get help, here with convincing my family, yeayea, ill print it out and hand it to them, and then THATS IT...I am tired of justifing myself.

I think fibro needs more ATTENTION.. Call or email your local news and maybe they will do a segment on it.. I was thinking that

we gotta make some noise... I think I will write my local tv station and mail them this PAGE...

maybe if the non believers see it from drs on the news they may shut the hell up

time the word gets out more..


TAMMY

 
Old 06-11-2004, 11:12 PM   #10
Junior Member
 
Join Date: Jun 2004
Location: Missouri
Posts: 22
DeadManWalkin HB User
Talking Re: If I am going to be labled, souldn't I have copyrights!!

Hi all my names Matt. Just wanted to let you all know that I know I'm not alone with Fibro and you should know that you aren't either. We're all here for each other and this is a great way to deal (therapy) with our frustrations with our families, friends, co-workers and physicians. Remember, sometimes we have to "walk alone" in life, and as unfortunate as that is, you have to keep "walkin". Keeping positive and motivated is a struggle for all of US every day. There's so much I want to do but just simply can't anymore. Took a long time to accept it but I did. Just do what you can do, try to find things that you never did before and see if you can do them. Try to look at tomorrow and not right this minute because there's always something to do tomorrow. Keeping busy mentally for us is just as, if not more than, keeping physically active. I've found your mind can keep you as busy as you need to be. Try setting up a website for yourself about anything that interest you. Maybe a journal or an online "blog" of your day. If you can just pull yourself up, and I know it's terribly difficult at times, and just focus your anger or disappointment in a positive way or manner you'll overcome at least part of your, mine, her's and his Fibro!! That said, you know that's easier said than done, but ya gotta keep on keepin' on. I was in the first Gulf War, and, probably has to do with my condition. I've had the run around with the Government V.A. health care, or lack there of, for too long now. So I decided a month ago to contact a local ABC affiliate and tell them my story with Fibromyalgia and other mysterious "conditions" I've come down with. They were more than willing to do a feature about me and my struggle with the V.A. and being turned down for Social Security Disability. It's going to air during "sweeps" for 4-5 days during that week in July. Turned my anger into a positive and hopefully will create some awareness about Fibromyalgia and Gulf War Illness for thousands of other Veterans and myself. I went back and forth mulling it over and just made myself commit to it. I hope I haven't been overly melo-dramatic here. Sorry if it is. I just hate seeing people down when I know they have it in them. Acceptance of all OUR issues, even the ones our friends, families, co-workers and physicians refuse to accept, we have to accept ourselves. Also, if anyone has myofascial pain like me is having a hard time controlling it, my new private (not Veterans Admin.) physician just presribed me a time release Duragesic patch that works really well. It's effect last up 72 hrs or so. Also sorry if my board name offends anyone; It's a David Bowie song and I'm a big fan of his. Sometimes I feel like a "Dead Man Walking" but I just keep on walking.....................Matt S.

 
Old 06-11-2004, 11:29 PM   #11
Inactive
 
Join Date: May 2004
Location: Western Colorado
Posts: 457
taurus3 HB User
Re: If I am going to be labled, souldn't I have copyrights!!

Hi Matt,

I don't think you're name is offensive at all. Quite humorous really. I'm sorry to hear about your story and encouraged by your news story.

I channel my frustration into songwriting and other things like that. I'm sure many of us have creative outlets and things we do to make life meaningful or we wouldn't be here venting.

It does feel great to have somewhere to go to talk about things though. I only started posting here a few weeks ago because I was feeling just that, ALONE. I was always a very social person and being housebound a lot is tough for me.

I am saving money to get a computer that can handle voice recognition so I can write a book about living with ilness. Even if it never goes anywhere at least I will have gotten my feelings out. But unfortunately I can't type it myself at this stage. So it will have to wait a bit.

It's interesting to hear from a man with this illness because there are so few of you. So if we get all periods, bras and pantyhose on you, forgive us.

Glad your docs gave you something that's working for you.

 
Old 06-12-2004, 12:08 AM   #12
Junior Member
 
Join Date: Jun 2004
Location: Missouri
Posts: 22
DeadManWalkin HB User
Smile Re: If I am going to be labled, souldn't I have copyrights!!

I've read some of the other Fibro threads and saw you are claiming SSI. If youv'e been denied don't fret......Get yourself an attorney. They will work on a contingency basis and if ther'ye any good, win your appeal for you (they do get 25% of your retro pay though). My atty. is politically motivate and has talked to Represenitives and congressmen about my ordeal, Kit Bond being one of them. So in that regard, I may have an ace in the hole! Matt S. BTW, if anyone needs more reading about problems with Fibro, alot more of us are over in the Gulf War Illness area.

Last edited by DeadManWalkin; 06-12-2004 at 12:17 AM.

 
Old 06-12-2004, 07:36 AM   #13
Senior Member
(female)
 
Join Date: Nov 2002
Location: Horicon,WI , USA
Posts: 274
DecLady HB User
Matt, I am proud to just have read your story...

And, NOT offended by your call name. I think we all feel like that sometimes with this darn illness! I commend you for turning what can be so negative day by day into something positive that may just help others too! So, work hard to keep up that good attitude...and if you have a day you don't feel so positive..know that there are people that will listen and help boost you up too!

 
Old 06-12-2004, 07:40 AM   #14
Inactive
 
Join Date: May 2004
Location: Western Colorado
Posts: 457
taurus3 HB User
Re: If I am going to be labled, souldn't I have copyrights!!

Thanks for the info Matt. At least after the service to our country somebody is trying to help you folks. I will check out that other board some time. I'm about as far away from the Gulf War as you can get but the info could be useful. Chemical exposure can defnitely cause fibro. I've had fibro for twelve years though and it came up after I got lupus when I was 17. So I have a long history of dealing with illness. Fibro just happens to be the worst one at the moment. I thank God every day that my lupus is and has been in remission for about three or four years. Fibro stinks but it's not gonna kill me as far as I know. I came close a couple of times with lupus.

TTFN - Andy

 
Old 07-30-2004, 04:54 PM   #15
Junior Member
 
Join Date: Mar 2003
Location: Houston, Tx, USA
Posts: 20
Beary Tired HB User
Re: If I am going to be labled, souldn't I have copyrights!!

I swear, I must have the most insenstive family in the world. Last week and throughout this week, I have been very sick with a stomach virus. I lost 10 pounds in 3 days. I have been too weak to call anyone. My husband has been very nice and helpful, but my parents and siblings did not even call me ( I still have not heard from them in the past 2 weeks). I refuse to call them. I seem to be the only one that makes the effort to keep in touch. I give up...these people just don't care. The world revolves around them and I suppose if something really happened to me they might notice and take a moment out of their busy schedule to see how I am doing. I don't expect people to feel sorry for me, but I don't want to feel like this illness has ran everyone out of my life. I don't deal very well with flat out rejection. How does everyone relate to their extended family? Is it just me that feels this way? I would appreciate advise on how to better handle this situation.

Thanks for the advise.

Last edited by Beary Tired; 07-30-2004 at 04:56 PM.

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:54 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!