Message for getfitat40

Discussion in 'Fibromyalgia Main Forum' started by marw, Feb 12, 2006.

  1. marw

    marw New Member

    Hi there,

    I was just reading where everyone is from and came across your name. I live in Chicago about 12 blocks from Wrigley field over in the Vicinity of Southport. We are neighbors!
    Are you interested in starting a support Group? There used to be one in Chicago, but it has been disbanded. We could run a poll and see who else is here or if they are interested.

    Just an idea.

    Margaret

    P.S. Sorry, I accidentally posted this twice. Then I tried to delete one copy but it is still on the Board, but just doesn't open when you try. I'm still learning thse Boards.
    [This Message was Edited on 02/12/2006]
  2. marw

    marw New Member

    Hi Nancy,

    I live on Cornelia a few blocks west of Southport between Southport and Ashland. So we are close indeed.

    Actually I was thinking of a live group once-a-month kind of thing, but online is good, too. The one I found out about which is not meeting anymore used to meet at Swedish Covenant Hospital. If there were enough people in our neighborhood, then it is easy to find a church or the "Y" where we could meet. For the whole area, probably downtown at a restaurant or Library? A restaurant might be good or coffee shop if there are only a few, and we don't have speakers or anything. I think the old group used to have speakers and so on. Or...my doctor would get us a meeting room at St. Joseph's Hospital. For a Northside group we would probaly need to put flyers on Bullentin Boards in the neighborhood. I can do that part, but might want to wait until the weather is better. THese are just some ideas. nothing written in stone. And of course we always have to consider our energy.

    Anyway, a local online group would be great,too, as we could exchange info on the local scene and services as well as supporting each other.

    Unfortunately, after I had this great idea, I don't really know how to do a poll. I'm willing to do it (I can probably figure it out) but I have to do it probably on Tuesday or Wednesday. Tomorrow (Monday) I am going to the hospital on an outpatient basis to get what's called a guided-arm epidural injection in my spine for my herniated disks. I am allergic to Iodine (which they have to use) so I will be pumped full of prednisone and Benadryl and will be too out of it on Monday to do anything. Most likely I will not be able to go online at all, although it varies....usually a lot of pain the first few days after this. THen I am lots and lots better for a while.

    How does one set up a local suppport group online? What I'm saying is for that, maybe you should do the poll, or tell me what to say and I can do it Tuesday.

    It would be interesting to find out how many people have this in Chicago. I know there are very many. They may not be going online, so we may not find them this way. But we can sure try.

    I have to leave in a few minutes to go to the health club (I need to do a little exercise tonight)...I used to belong to the "Y" but I go to the Xsport Club on Ashland now...do you know it? But will be home later. I have to be asleep tonight by 12 midnight because I can't eat or drink after that.

    Say, I have a friend who would be interested in your online weight wAtching support group. Myself, I need something probably to gain weight...I have to work at keeping it up!!

    Talk to you later.
    Great to meet a neighbor!

    Margaret




  3. marw

    marw New Member

    Hi Nancy,

    I keep typing your sign-in name in the message bar, only so you can see it, if you are running a search, but actually right now this is just our thread so it probably doesn't matter.

    Well, cringe is right! About the back shot, I mean. I don't mean to make you cringe more, but it is the shot from hell. IT is 12:45 Monday night, and I've about maxed out my pain meds. I have a couple more days of this to go before I find out if the shot is working. First the numbing medicine burns heck out of the overly sensitized nerves (the part I'm going through now) and then in a few days the steroid will cut in, so I will see if it fixes it.

    Ar last, however, I know for sure that it is this nerve--2 of them actually, coming out of L1/L2/L3. My back and belly both hurt, just like they did before the hernia sugery, so it probably never was the surgery causing the pain. Thing is, no one seems to know what causes it....I do have stenosis, but it should be hurting the other side, not this one. I have got to find some way to get good tests on this--it is not showing up on the MRI like it should, and yet something is terribly wrong with it. And of course, there is no way for me to talk to this wonderful doctor (the Anesthesist....he really is a good Pain doc)....he is always so busy. Spends most of his time in his Surgery. Maybe it will be O.K. I do get to see him on March 6, the date of the next shot...but that shot is not for this. Now that we've found which nerve, I just want to find a CURE!!!! While I was sleeping it off this afternoon, doped to the eyeballs, I had a terrible nightmare that he dropped me. I know it is because I have been to so many docs that got fed up with me....and NONE of them ever approve of all the pain meds I take, not even this one. It was such a terrifying dream.

    Sorry to leaped into the middle of my "Pity Party" here. I think I should have posted some of this in a new thead on the Board. Do people do that, even if it is not really related to the FM? (Although it may be part of why I got the FM). Speaking of which, Thank heavens is hasn't shown it's ugly head yet...the FM, I mean....I really couldn't handle 2 majors pains like this at once.

    OOOh EEK! Sinus infections are so awful. I had one recently too and am just praying it doesn't come back. It made me weak all the time. My doc gave me Levaquin for it, but I don't think I took it long enough. Usually it would take 20 days to clear a sinus infection, and I only took it for 10. He also gave me Flonase, which I like, even if I don't have a sinus problem because it clears out my head and I sleep better. Good luck tomorrow (today it is now!)

    I'm glad you like the idea of a face to face Support group, and when I get over this pain a little, I can probably put together a poll, or you can, if I don't figure it out, and just ask who lives in the Chicago
    Area. I think it would be a good idea to putup Fliers at the Jewel, Walgreen, and YMCA (maybe other places, too, those just came to mind.) I met a woman in Walgreens who has this and she lives around here. She is the one who told me about Dr. Katz, who as it turned out would not take Medicare (I am 66 but I don't look it....I hope!...funny how a lot of FM people are like that....we always look healthy or good or anything but sick (rolling my eyes here). I will also try to call the woman who told me about the group that stopped meeting, if she answers the phone. I got her name from this web site, but not the Board. She might know people interested. I asked why it stopped meeting, and she said it was hard, because people don't always feel good, and it was hard to keep consistency. But I would still llke to try. Especially if we found a bunch of people around here, I don't think the consistency would be a problem. And I don't mind using my phone for the contact # for people to call, when we get started. (Although I don't have a separate line for the computer, so when I'm on, you get a busy signal.) I do have a printer, though, and would not mind doing up some fliers.

    Well, I will go and talk to you later.
    Wishing you luck tomorrow. Hope you feel better.

    Margaret

    P.S. Maybe I will post some of this back problem anyway, probably there are others here with back troubles, too!

  4. marw

    marw New Member

    Hi Nancy,

    I have to say I am soo envious of you getting to see Dr. Katz. He would be my choice, too, but I just can't get them to take Medicare. Rush Hospital is where I go to my Pain doctor, Dr. Lubonow, who is great, too! He's the best pain doc I've ever had. He also wanted me to see Kr. Katz, but its a no-go so far.

    I felt better when I got up this morning, but not now. I think I will have to wait until tomorrow to do any posting. But the idea for the Thread sounds great! You want to do it, or do you want me to? Doesn't matter to me.

    I'll see if I can come up with a rough draft for a flier this week. I'll try to do it in Word, and then see if it will transfer via clipboard over to here to this thread so you can take a look.

    I've got Opera on Friday nite, and getting my own hair done that afternoon, and got the dog bath and housecleaning (my girl friend's BF vacuums for me) on Thurs. So maybe I'll give the flier a go tomorrow!

    I'm getting off for now...got some pain tonight.

    See ya tomorrow! THe Support Group seems like a "go" to me!
    Hope we get some people. I know they're out there.

    If you have ideas for the Flier, let me know. With Word, I can do some graphics, only they won't transfer by clip board to here. Maybe we don't need them....whatever...I'll experiment!



    [This Message was Edited on 02/14/2006]
  5. marw

    marw New Member

    Hi Nancy,

    I was thinking the same thing...get together for coffee on the week-end. Either day is O.K. But shall we say 11:00 Saturday? Where is Julius Meinel? Is it on Southport? Is it the bagel place between Roscoe and Cornelia on West side of street? Anyway, I don't remember it right now. Can you give directions? Sorry, I just looked up the bagel place...it is called Einstein Bagels. Or Ann Sathers? I am very willing to go to the Julius Meniel, but I can't find it in the phone book, so need directions.

    I think I'll go ahead and start a thread that asks who lives in Chicago area. I made a very simple Flyer today and printed off a couple....will bring it and show it to you. Free free to make suggestions....I've never done this before. I kept simple, with big fonts, in black and white, because FM and CFS folks just don't have time or patience to read small print. I'll try to bring it from my clip board over to this thread, but you will have to visulaize my first name and phone number going up and down between dotted lines (you know, so they can tear the strips off) instead of the big blank box on the bottom. For some reason that will print off correctly but will not save in the right format in my computer.

    I meant to ask if you want your name as a contact also? It might be better that way, so when my comupter is busy, they have another number to call. Well, we can discuss the details and iron stuff out on Saturday.

    JUst tried moving it here...it will not do it. Sorry. I will just bring it on Saturday (or if Sunday is better, let me know)....shoot, I wanted to show it to you. Oh, well...

    Hope you are feeling better. I think I am, for now. I hope so.

    Let me know about how to get to where we meet.

    Margaret






  6. marw

    marw New Member

    Hi Nancy,

    Julius Meniel sounds fine. I'll find it, I think I know exactly where you mean, and Sunday is actually better for me too. Is 11:00 still O.K. or do you want it later? I'm a late sleeper, too, but I'm usually up and going by 11:00, no problem.

    I thought about the phone thing. I'll think about it some more. I don't want to put my number on the computer on a public message board, but since I'm not putting my last name or address (just first name and number) I might be O.K. with it. I don't blame you if you are not, however, and I want to think about it a bit more myself. I am listed in the phone book....I sort of have to, because people are always coming in from out of town, and I haven't had a problem with that. Also, I used to put the number in the Reader if I wanted to sell something, or was moving and all was O.K, but that's been a while. This seems different, so I think you have a good point. I'll try to make up my mind before Sunday.

    So far I don't we have any answers on the thread I started. Do you think I worded it wrong? (Oh, one thing on the safety thing....I don't think we should EVER meet at our houses under any circumstances, because that would be asking for trouble. THat's why I said public places, like a restaurant for a small group, or a church or hospital for larger ones.

    If I get some info over to Walgreen on Belmont, I think we will get people from there who fill prescriptions there. I know all the Pharmacists there (what does that say about how many drugs I buy?!!! Yikes!).

    I felt like crap all day today. I don't think this shot has done any good on the post surgery hernia pain or the IBS nerves, whichever. I did some reading and found out IBS can occur in the spinal cord (pain triggered there) or in the brain, or in the belly. It was interesting. Maybe I'll post it later when I feel better.

    I'll see you Sunday.. I have red hair, am small 5'2"...people usually seem to know me, but I'll try to get a pic up (if I figure it out) and get my Profile done soon.

    If I do get a pic up, don't think I really look that good (haha) It was taken several years ago on a cruise ship, and they always make people look good. It's the only one in my computer, and I don't know how to scan them in anymore. Also, I look a bit older than that now.

    Talk to you later.
    Margaret

  7. marw

    marw New Member

    Hi Nancy,

    Yes, I know what you mean about wanting docs to just cure things! I could certainly use some magic from OZ just now!
    Venting sounds good! And 11:00 on Sunday at Julius Menial is fine. I'll be there! Looking forward to it!

    I still haven't put a pic up, and I may not have it up. I think the pic is too cheesecake. It looks like me, but friends referred to it as my "bombshell" pic, so I don't think it is a good pic for public Board. (laugh)Also I look a bit older now, like I said. But you will know me. You will see the short red curly hair.

    Out of curiosity, I clicked on the Support Groups on the side on the main page here, and typed in Chicago. I came up with 2 for Chicago, and quite a few in the suburbs. The one I called before is there, although the gal (also named Nancy) said the group was not together anymore. The other one is on Broadway about 3700...the contact person I mean. I might call or email, and see what that is about. I wish we could have one around here, however, don't you?

    I'll see you Sunday!

    Margaret