My post was deleted

Discussion in 'Fibromyalgia Main Forum' started by CinCA, Mar 1, 2006.

  1. CinCA

    CinCA New Member

    I'm having a very hard time dealing with various stresses, which are really aggravating my CFS. I sent a blunt but I felt courteous post, asking point-blank if I was still welcome to post on this site, with all the threads flying around these days (being I don't have FM and I do have extraneous challenges that are not solely disease-related but really impact it nonetheless). This post appears to have been deleted. That tells me something plain and clear. I do so appreciate everyone's help and generosity, and I wish you all the best. And if anyone does have any tips for me, esp. how I can take care of my mildly autistic and at times out-of-control daughter, I would really appreciate it. It's hard enough for someone without CFS!

    Thanks.
  2. CinCA

    CinCA New Member

    The post seems to be deleted. Bummer! Try again? And thanks! I need to take my daughter to school...we are so late, but I don't care I am so wiped out today...but I'll be back later (by 10:30 PST) if you are up for a chat.

    Thanks so much.
    C.
  3. CinCA

    CinCA New Member

    I posted a rambling thread earlier today about my daughter, etc. After reading people's posts about how annoyed they are wading through OT stuff (and seeing how they'd see that post as OT), I deleted it. Sorry. But I did post another "Am I welcome" thread that did appear to go off into nowhere. Maybe it was technical difficulties, but I never have had that happen before.

    Anyways, thank you so very much, and hope your day is starting off well! No news re: hubby's boss's wife, btw. Well, hopefully no news is good news.

    C.
  4. CAAnnieB

    CAAnnieB New Member

    Cinca,

    I read the post you wrote that was deleted...I'm so sorry that you are feeling unsupported at this time. We are under SO much stress from these DD's. Add the "extraneous challenges" and it can be overwhelming.

    There will always be disagreement here on what topics are "appropriate"...When the Chit Chat & Worship boards were eliminated; all those posts joined the "FM/CFS" posts here & people now have various opinions about this. But the decision to combine all these types of posts was made by ProHealth, not the members!

    In my opinion; ALL posts should be allowed & belong here! (Obviously only if they follow the general rules as outlined by our membership policy.) For those who do not wish to read about non-specific illness posts (OT's); it is their resopnsibility & choice to avoid the off topic posts.

    You are as much of a valued member here as anyone else! My heart aches for you in coping with the challenges of raising your daughter. I too have this struggle as my son has Asperger's. The stress of this type of parenting IS related to our illnesses because ANY stress will exacerbate our conditions.

    I just wanted you to know that you are welcome here. Unless you break the rules; or the "administration" feels a post is inappropriate, your input & reaching out for support are what this board is all about. I'm guessing they deleted your post because they felt it might flare controversy...Maybe you will get an E-mail explanation?

    Sending you love & a HUGE hug,
    Annie
  5. fivesue

    fivesue New Member

    Please take heart. Things happen here that just break my heart because people are hurt....people who don't need any extra burden. That's all of us!

    You are a dear person and I do hope that you will continue to post and be part of this board.

    Wondering about boss's wife?

    Take care and know you are a valued member of this board.

    Sue
  6. windblade

    windblade Active Member

    Oh, I'm so sorry that you're having this extra stress! Please don't think about leaving - just this past week, I had one or two posts that 'didn't take'.

    I've heard many others say this happens to them from time to time.

    Also, I know there are many other parent's here whose children have Asperger's or autism. This could be a source of support for you.

    Sometimes I feel like my whole life is "off-topic". Since I have had post-traumatic-stress-disorder from early childhood, my life has been different from others.

    I hope that you will stay - you will be surprised how many times there is someone struggling with the same issues in their lives. And our lives don't and can't be similar in every way!

    Sending love and blessings to you and your daughter!
    Judy
    p.s. I have cfs, not fibro. also, and MANY things affect it.

    Please feel welcome!!!

  7. elastigirl

    elastigirl New Member

    You are wanted here :). You have shared so much with us, and spoke for the many overwhelmed women who cannot speak for themselves.

    I think there's a lot of post deleting going on today -- my post, which I thought was pretty neutral, was deleted too.

    I'm not going to take it too personally. It seems to be the trend of they day :).

    I hope you will stay. But if you do need to leave, just consider it a 'board break,' and come back later.

    As with any support group board, the mood and trends ebb and flow in unpredictable ways. Sometimes you just need a breather. By the time you return, all may be well again.
  8. CinCA

    CinCA New Member

    It's been a rough 24 hours (no news re: hubby's boss's wife - accident/coma). My emotions have run the gamut, that's for sure. Doesn't help that my dad went for a walk around the block and dropped dead of a heart attack in the living room 9 years ago next month...it still shocks me that life can, and does, change in an instant. But it's been long enough I am "over" losing my dad, as much as anyone can be, although I still love him dearly and am so sad he couldn't be there for my wedding or to see my daughter (I did re-add the "spring" photo to my profile, with her in it when she was 2). Honestly, though, I do have so much to be grateful for. Can I just get greedy for a minute and wish I had more sincere friends, just a few? Or rather, that the sincere friends I do have lived a little closer, rather than almost all out of state?

    To hangingthere...OMG! You really have been through the wringer with your son! At least mine has gotten substantially, WAY better over the past 1 1/2 years! You have my utmost admiration for going through what you have done, and I am glad you are finally, finally sleeping! I so hope your son is doing well. You'd think my daughter would've learned when she partially dislocated her wrist at O'Hare Airport 2 years ago (we were there visiting my mom), when Daddy had grabbed her by the wrist like always, so she wouldn't run, and she flipped and threw herself on the floor. Daddy usually isn't the one who would hold her, so he didn't let go in time. BTW, O'Hare has a walk-in urgent care clinic between terminals 1 and 2, if anyone is curious. Fortunately, one quick turn of the wrist and a lollipop (plus a band-aid), and my kid was as good as new (she also has a very scarily high pain tolerance...I really worry whenever she DOES cry). And we did make our flight home! But yes, the past 4 years have been long and hard. Again, though, I know it could be so much worse, and I am so grateful my daughter really has turned out well. Still so busy and defiant as ever (can't WAIT for those teenage years), but she has so much going for her! And in this day and age, I would much rather have a strong-willed, independent girl than the other way 'round. But yes, the stress and struggle to keep up with her greatly contribute to keeping me mired in CFS-land. After the zigillinth time my doc told me, "You have GOT to cut down on your stressors!!!!", I looked him square in the eye and said, "Okay...do you want my husband and kid???" Really...those exact words! And he gave me a very knowing look, and just asked me to do what I can. I did get away for a little vaca. back in Sept., all by myself, because I was utterly losing my rope and was in danger of becoming seriously unglued. I didn't know what to do, and I kept going in circles re: my detox regimen, etc. It was wonderful...I so wish I could do it again! I love my hubby and kid, although hubby's been driving me nuts for awhile; doesn't help he doesn't believe at all in CFS...but that's another story. But I do so relish my space!

    I think for me, like most people on this board, it was just way too many stressors in too short of a time, and then the pile of blocks finally collapsed and here I am. I honestly feel I am lucky I caught this all now, before something really major has a chance to develop. I still think I can beat it and live a somewhat healthy life, probably even healthier/better because of what I've been through and learned along the way. That is my sage wisdom of the day. :)

    Well, I've spent way too many hours on this board over the past few days, as I always do when I get in a bad flare and feel sorry for myself. Can't concentrate on anything, anyways! :) But I really should tear myself away and try to get some things done around the house. That laundry is still calling my name....

    Thank you again, everyone, for all of your help, and esp. for your prayers for my husband's boss's wife! I promise I'll post as soon as I know anything different, whatever way things go, although I'm not exactly in the direct loop as obviously hubby's boss hasn't been at work all week. My heart does go out to them, though.

    I hope everyone really does have a good day today, and this board calms down a bit after all the emotions flying around. Is it a full moon????? I seriously don't know...I don't even know my directions around here, and the movers packed my calendar in some weird box...I still can't find it, and I've unpacked just about everything but a few things in the garage! At least I have an excuse for not knowing what day it is! And I am a natural blonde (really...I'm 1/2 Swedish). That works every time!

    Take care, everyone, and thanks for your kind words and support!
    C. :)
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  9. CinCA

    CinCA New Member

    So appreciated! Gotta do that laundry now. At least it makes me feel marginally productive.

    C.
  10. CinCA

    CinCA New Member

    Got sidetracked, as usual...laundry is STILL calling my name!

    Yes, I have met so many not-nice people over the years I shouldn't be surprised they live in cyber-space, too. And I know to not take anything at face value when it comes to people's actions. Everyone on this site has been tired, hurting, and in pain for months, and in many cases, years. So it's understandable they can get cranky.

    Still, it's just hard when you are so alone dealing with this and then you read some of the posts that make it sound like all this site should be about is ?s re: FM. I don't have FM, thankfully, but in general, I really like reading things OTHER than stuff about these DDs. I find if I dwell in it, I tend to obsess about the symptoms and just make myself miserable. But that's just me, and for me, a change of pace and some laughs really are the best medicine.

    Thanks!
    C.
  11. Cromwell

    Cromwell New Member

    I hope that was not a new trend. You always seem so good on posts.

    I will always help re your daughter as you know I have an autistic son. Love ANNe C
  12. CinCA

    CinCA New Member

    So you know what it's like. Fortunately, my daughter is very high-functioning and never had the classic verbal delays. I know it could be so much worse, but we also didn't qualify for any help at all, so that made it tough, too. I'd love to talk more and see how your kiddo is doing. Let me know.

    C.