"Get Help from Community for our Fibro" But Where are They??

Discussion in 'Fibromyalgia Main Forum' started by zenouchy, Jan 24, 2007.

  1. zenouchy

    zenouchy Member

    Hi All,

    Thank you for reading my post. I'm feeling really hurt and upset right now. I don't know if you have read some of the articles about fibromyalgia/cfids that suggest getting help and support from our neighbors and communitiy for our illness. It's a great idea, and I would love it, but I can't find it. And I've sought it out actively in a kind and proactive way. It really hurts deeply that I can't find any. I'm sorry this post is so long.

    Case in point:

    1. Last year I tried starting a fibromyalgia support group at a nearby medical center. It received positive support. I had a woman who is a social worker agree to facilitate it, which was awesome! It took awhile to get membership going, and in the summertime, it was pretty dead. Therefore, she said, "let's put the group on hold for now". I understood and said sure.

    She then had to stop the group all together because her job got too busy and and another social worker got laid off due to budget cuts. It wasn't her fault, but it was SO FRUSTRATING. That was last fall. In the meantime, she got TONS of responses from people! Great.

    The reason I wanted to hold the meetings at the medical center were many:

    1. It was right down the street from me, so I wouldn't have to drive a long distance (a big issue for me).

    2. The meeting place is FREE. Members shouldn't have to pay.

    3. It would be facilitated by an experienced person who is knows how to run support groups. (People can possibly say things and open up about things that a lay person like me may not know how to handle, like suicide {although I would hope not}, but if they did, she would know how to handle it. Plus, she knows how to keep the topics on track.

    4. I'm to exhausted and deal with fibro fog to facilitate meetings, coordinate meetings, find another place that is free, and make new flyers (which I already did for the existing meeting), etc. I can help with one piece of it with the social worker, but to take all of it on is too much with my lack of health...which the whole point of needing support.

    At any rate, the support group got canned. It just hurts. I needed the support and so did others. I know she didn't cancel it for the heck of it and that her job got very busy. But that's just it! Everyone is BUSY!

    NEXT ISSUE:

    My neighbors! I have these great neighbors across the street who are retired and volunteer and spend a lot of time helping lots of people, including a next another neighbor who has cerebal palsy, which is very kind of them. They also volunteer a lot at their church. Also extremely nice.

    It hurts though that they don't help me. They will ask how I'm feeling and be sweet about it, but they don't help me out. They aren't obligated, but they know I suffer a lot sometimes, even though I have periods of good health. They go to the grocery EVERY DAY (because they told me so). They know it's hard for me to go sometimes. Why can't they ask if I need something?

    I've even called them the few times I'm feeling good and going to the grocery and ask if they need something before they've gone to the grocery for the day (hoping they may return the favor), but I'm very sincere about it. They give a positive response and tell me how sweet it is that I call. I just don't get it. When I ask how they are doing, the response is, We're fine, but we're just SO BUSY!

    There just doesn't seem to be a community when everyone is "SO BUSY" that they can't help people (except for the neighbors who have reached their "quota" for helping people...). It's really ashame to me. My friends either work mega hours and travel with their jobs or they have kids AND work. They love me, but they don't have time to help either. Again, BUSY DELUXE. Hubby helps as much as possible, but he has to work and can't do everything. Maids cost an arm and a leg here.

    I wish life was different sometimes when people weren't always so pressed for time. It really takes away the feeling of community. What can you do?

    Thanks for letting me vent. I'm usually in a better frame of mind.

    Wishing you all a happy/healthy day.

    All the best, Erika

  2. webintrig

    webintrig New Member

    I read your bio and what you had to say here. You had how many people in your support group coming?

    You know driving distances are really hard on people with these conditions.

    I understand what you are saying about the need for support groups and other programs as well to help people with these condition{s}.

    I can tell you how {we} can get this problem fixed or at least try too.

    Can you meet me in chat so we can discuss it?

    Fibro hugs,
    webby

  3. zenouchy

    zenouchy Member

    Thank you Prickles for taking the time to respond. I appreciate your support!

    Webby, I would LOVE to talk to you in the chat room. Just made it there. It took forever. If I don't see you there now, I'll try to hook up with you soon. I'll send you an "Attn Webby" note and see when we can coordinate. It's very sweet of you to help me!!!

    Thanks again.

    Warm hugs, Erika
  4. zenouchy

    zenouchy Member

    Thanks for your advice. I FINALLY got some help from this kind social worker after exhausting several other options....docs, therapists and looking for other support groups in the area (Austin/Round Rock) and coming up short. I don't feel it's appropriate to ask for her supervisor as she has been quite kind and I also don't think he/she could help. That would be a huge stab in the back. It's a budget shortage that she can't control.

    As for the neighbors...that's a tricky one. I don't want to overask for things. I might really need them in a pinch, so I don't want to ask for something unless I really need it. (The grocery is right down the street, so gas actually isn't an issue.) That's the thing with"charity", and I hate being on the receiving end of it. I feel people should help if they want to. I don't like asking and don't like pushing people. It's incredibly awkward. People aren't mindreaders, but at the same time, I don't want to be a burden. What a fine line that is!

    Thanks for responding. No easy answers!

    All the best, Erika
  5. webintrig

    webintrig New Member

    That is good advice you gave.

    I am not in the Dallas Area.

    Is there a limited of number of support groups for FMS/CFS there in Dallas?

    Are people that have these conditions there open about it or do they hide it by not talking or admitting they have it?

    Are dr.s hard to find there that understand these conditions and will treat you with compassion?

    I could ask you a thousand and one things but my mind just stopped so I am too.

    You are probably saying,"Woohoo", "Yeah"!

    so anyhow my clock which is me just ran down so I will just wait on your replies if you will be so kind in doing as such. Thanks in advance!

    Fibro hugs,
    webby
  6. balletdancer74

    balletdancer74 New Member

    Hi Erika!!

    I'm in Dallas like Dncnfngrs, so for me, it's a major adjustment as being from NYC/CT and having the best doctors and healthcare at my disposal has made living here very difficult.

    I hate asking people for help too, but sometimes, all it takes is asking once and going from there. You might be pleasantly surprised. It can't hurt to ask for help from your neighbors on a day that you really need groceries, etc. See how they react...I was brought up to immediately OFFER help, but we're not all raised the same. :)

    As for support groups, there's one here in Dallas/Ft. Worth, but they're not very active...can't even remember the contact info.

    I wish I had some great advice for you...just know that I'm thinking of you....You've got us here!

    Warmly and with the blessing of shalom,
    LB32 (Leeza)

    p.s.
    I STILL haven't found any good doctors especially who take my insurance here in Dallas...so I keep flying back to NY...exhausting but necessary for now......
    [This Message was Edited on 01/24/2007]
  7. webintrig

    webintrig New Member

    for you and I did go to chat for awhile. I posted about an article that Prohealth had about a House Bill...check it out! That is the key!

    Leeza

    Wow, you have had to become a jet setter. I thought there would be good dr.s there that would take your ins. What kind do you have? Bless your heart! Well, praying you will be able to find some dr. closer to home for you!

    Fibro hugs,
    webby
  8. zenouchy

    zenouchy Member

    I'm so tired right now, so I will respond more tomorrow. I didn't articulate a response very well....I have great docs, but meant that they didn't have any resources for me in terms of support groups. Otherwise, my docs are great and many of them are close by. Sorry about that! I very much appreciate everyone taking the time to respond. Forgive me for not responding more thoroughly right now....me so sleepy!

    Warm hugs everyone and have a good nite, Erika
  9. zenouchy

    zenouchy Member

    When you respond to a post, as you know, everyone elses responses erases, so you have to go on memory on what everyone said. I hope I remember everything correctly! Leeza, I hope you find some great docs in Dallas/Ft. Worth. It's a large area at least, so hopefully you will find some good ones and it won't take you too terribly long.

    Leeza and dnc, I have some great docs I see in Austin and Round Rock (just north of Austin).....they do not specialize in fibro, but they are very aware of the illness and take it into account as part of my treatment They are specialists...I have a neurologist (just see him sporadically), gynecologist, urologist, internist, and endocrinologist, all of whom I highly recommend.

    The endocrinologist just helped me with an unusual blood sugar problem that two other very competent docs could not diagnose, so I'm very happy with him. I had been struggling with it for at least two years, so I'm thrilled I finally got help with it.

    Webby, thank you again for your willingness to help me re: support groups! I'd love to talk to you in the chat room. I didn't try starting up the support group again. got busy just trying to keep my house up and running between bouts of being sick....you know how that goes!

    I'd love to talk to all three of you in the chat room! It's usually less crowded in one of the other chat rooms besides the fibromyalgia chat rooms, but we can meet there and then go to another one. Maybe Friday (tomorrow) afternoon? If not then, another time.

    Thank you all again. Let me know if/when y'all want to chat. :)

    Warm hugs, Erika
  10. webintrig

    webintrig New Member

    What about 3:00pm tommorrow? Or what time is good for the all of you who wants to meet?

    webby
    [This Message was Edited on 01/25/2007]
  11. zenouchy

    zenouchy Member

    Webby and Dcn (and hopefully Leeza!),

    Let's try to meet tomorrow, Friday in the fibro chat room at 3cst. I'll try my best to make it. From my experience, it takes several minutes to "get in" to the chat rooms, so I'll wait for a while for you all.

    Dcn, I hope you feel a lot better and get some good rest. Webby and Leeza, I hope you are both feeling well and can join us!

    After we get to the fibro room, we can move to another chat room that isn't crowded...like the Parkinsons room. The fibro room gets busy (the people are really nice though), so it will be easier to talk in a less crowded room. Hope to see you all tomorrow! If we can't make it, we can try for another time.

    Wishing you all a peaceful/restful nite!

    Warm hugs, Erika :)
  12. Seascape194

    Seascape194 New Member

    Erika, one thing that keeps coming up for me in discussions about getting help with things is that "you don't look sick". I haven't noticed anyone else mention it, but I'm sure we're all in the same boat.

    Personally, I try very hard to keep my dignity and dress reasonably well and put on lipstick (can't do the whole facial thing these days, my arms would tire before I'd be done!), but it seems like you just about have to be suicidal to get help.

    I wish you very good luck. It is very hard to run a support group with our issues. The burn-out time is so much less than non-fibromites.

    Take care, you'll be in my prayers.

    Hil