Paging ldbgcoleman....Lynn...??? for you

Discussion in 'Fibromyalgia Main Forum' started by orachel, Sep 14, 2005.

  1. orachel

    orachel New Member

    Lynn,

    I read your post about FCC improvements and I have a couple questions for you. They're pretty darn personal and nosy, so don't feel bad at all if you're uncomfortable answering! I'm just kinda desperate for specifics. I was diagnosed about a month ago, but literally just woke up one day in mid June and couldn't move. No precursers (that I recognized, anyway), I just woke up in extreme pain and that was pretty much the end of it. I immediately had to go on ST Dis from work, and they're still not paying me. Money is really tight now, as husbands salary barely pays bills.

    I've spoken to the local FFC, and love the concept behind diagnosis. I've read all the info they sent me, and I'm dying to go, but like I said, money is a really big issue. We have Aetna PPO, so really great insurance, but of course I have no idea how much they would reimburse me for any treatment/office visits/IV therapies. I know how effective IV therapies can be bc I used to visit a wellness ctr when I lived in Floriday and they cured me of just about everything ..literally even cured my colds and flus, with IVs, but they were expensive out of pocket. I had the money then, but I really don't now.

    So, I'm rambling bc this is really embarassing to ask! lol First of all, how deabilitated (sp? I'm foggy today!) were you before you started? I'm in almost constant extreme pain, and even the most moderate 15 minute acquatic therapy session is extraordinarily painful. Second, do you have ins similar to Aetna PPO, or something totally different like an HMO? Did your insurance reimburse you for any of the office visits/treatments? And if you really don't mind, do you have a general ballpark idea of how much you've had to spend there out of pocket since you started in May?

    I feel terrible even asking, but I just can't even bring myself to go or take my husband to the free seminar they do because I already know I'll love their multifaced approach to treatment (and diagnosis! I never bought that whole "there's no reason for FM, some people just get it" theory) and will be dying to start, and it just might be flat out impossible right now before my ST dis starts paying. Plus, I know if I take husband, and we can't swing it $, he'll feel absolutely wretched, and this has already been hard enough on him! But I'm completely laid up, and in pain, and dying to get back to work, even if I have to switch to a less challenging job. Plus, I could justify spending some money even if I have to yank it off a credit card or something if I was confident I'd be able to return to work!

    So, there you have it. Am I nebby, or what? I'm basically just interested in ballpark of how much treatments / IVs / visits were total out of pocket, and if you got reimbursed any of that by ins, about how much? I'm sure all my labs will be covered bc my insurance is pretty good.

    I'm just hoping it might be within reach with the carecredit plan payments they offer, or something. Again, please don't feel bad if you don't want to share this info with a total stranger, and I totally understand that everyones treatment is totally different.

    Thanks so much!!!!
    Rachel
  2. ldbgcoleman

    ldbgcoleman New Member

    The questions are fine! Not nosy at all. (No I'm not telling you my weight!HA)

    I was not nearly as debilitated as many. I was not taking pain meds at all other than over the counter pain relivers. If it got bad I was able to tough it through. I felt lucky.

    I had more difficulty with extreme fatigue. Out of seven days 2-3 I could barely do anything. The rest I would be done by 3:00pm. I was slowly getting worse. I could never make plans the whole thing was so unpredictable. I was working part time mostly travel and I would suck it up and make it through a few days then come home and collapse sometimes for a week.

    As for the cost. I have Blue Cross Blue Sheild of GA. They pay for all the labwork. They pay 60% of the visits and 0 for the supplements or IV's. after the initial 2 visits and the initial purchase of drugs the cost goes way down. The first two visits are $325 and then $165 after that. At first you go every 3 weeks until your treatment plan stabilizes and then you go about every 6-8 weeks. Cost varies depending on how you respond to treatment and what they find. Treatment lasts much longer with Lymes than with EBV.

    I will say they partner with you and are cognizent of the costs. They treat you as a partner. It is your decision what you do or don't do. However I will also say that I asked do they have people who don't get better and they have told me (DR B, the nurse, and the administrator seperately) The people who don't follow the advice don't seem to respond as well.

    This is a huge commitment and you really have to be dilligent about the treatment and then you have to take care of yourself for the rest of your life. You will never be fully "cured" You can get it under control and keep it under control. Dr B told me I could get back 100% of my function.

    I hope this answers you questions and I am so glad you are on the board I enjoy your posts. The main thing is to find a good Dr and never give up. I am really glad you are taking matters into your own hands!

    Lynn
    [This Message was Edited on 09/14/2005]
  3. ldbgcoleman

    ldbgcoleman New Member

    Just read your bio. Everyone Going to Dr J in Cleveland seems very happy. You may try searching Cleveland FFC or members Wishingonastar and Sarasmom. They both go there and both are much better.

    Also I was fixing up my house too. I had painted the entire downstairs and was having a great time antiquing and filling it up with my extra income. My mother in law was helping me making curtains. I would show her a picture and pick out the fabric and she would whip them out.

    I got pregnant and then sick and she got lung cancer and passed away last year. Everything came to a screeching halt. It drives me crazy but this DD and losing her has taught me about what is really important in life.

    I am finally going antiquing again! Take Care Lynn
  4. orachel

    orachel New Member

    I was in the middle of painting my downstairs, and hubby was just abt to buy me a sewing maching bc I just figured out the curtains I wanted to make for living room when I got sick! Isn't that weird? Living room still half painted, and no curtains yet, but my priorities have changed juuust a bit since then!

    Thanks so much for info, and advice about cleveland chapter. Info I got was for the one in Troy, MI! Didn't realize there was one in Cleveland, esp that was giving good results.

    My physical medicine doc told me (and actually, rheumatologist said same thing) that in a case like mine 30-40% improvement is considered outstanding. That freaked me out, totally. I'm 30 years old, almost totally disabled for life? Nuh-uh. Not if there are other options! So, I'm thinking I'll wait another 2 weeks or so to see if the meds I'm on will "kick in" like docs say...if not, hopefully ST disability will have kicked in by then. But clearly, I need to find a way to get treatment at this place.

    Thanks so much for your response!
    Rachel
  5. ldbgcoleman

    ldbgcoleman New Member

    I hope what you are doing works for you! By the way your picture is beautiful! I guess the best advice is don't get up. Noone knows everything even if they have a DR in front of their name! They are human too. I think if they find the undferlying causes they can treat them! Take Care and good luck.

    I know you have been a little bored so I am guessing you watch all of the decorating shows. I am a Cottage/French traditional girl with a touch of whimsy thrown in. I also like garden style. I love Fabric, especially Florals but I have to keep it toned down or my husband starts to complain. Mostly he could care less so I get to do what I want!

    Take Care and please keep posting about your progress! Lynn
  6. orachel

    orachel New Member

    Bizarre. I call mine "eclectic funk"...cottage with lots of random antiques/collections, some french(esque...can't afford most real pieces!)structured pieces, plus I have a few amazing rustic/primitive pieces thrown in. Then add some really fun funky stuff like a collection of handpainted chinese paper fans (hanging in my oh so traditional french blue dining room! lol), stained glass panels hanging in front of windows, etc.
    Yep, I love the whole kit and caboodle...but forget about country cutesy cutesy for me. Also, don't understand oak veneer/lazy boy recliner type furniture that most of the country seems to love. Never have, probably never will! LOL
    I love the decorating shows...primarily the BBC ones (Laurence Llewellen Bowen is my hero...but I probably just murdered spelling of his name!)...changing rooms/ cash in attic /etc. I just love english programming, period.

    I enjoy your posts too! Lets make sure to keep up around the board, ok?

    Hope you're having a wonderful weekend! And yeah...I am stuck at home and bored as all get out....filling my (ooh, too plentiful) alone time with reading fabulous novels, tons of research on DD, and getting/giving support here with ya'll!! Really trying to stay away from TV as much as possible though during this nearly immobile phase (grrrr...driving me nuts not to be able to DO anything!!) of my DD because I'm very concerned about possibility /probability of "turnip-ification" of my brain. The fog is bad enough...trying really hard (though do give into temptation often!) not to become el couch potato.

    So, happy trails.
    Talk to you soon.
    Rach
  7. orachel

    orachel New Member

    with cottage rosey/type prints! And bty, please tell me you meant "don't give up" and not "don't get up" in your last post?! I'm 99% sure of that, but if I'm wrong, pls let me know what you meant by don't get up, bc i didn't get it if that's what you intended.
  8. ldbgcoleman

    ldbgcoleman New Member

    I meant don't give up! Sorry I can't type. I have actually had a busy weekend. Went to dinner with a friend last night then we went to a Cosmopolitan party. (an excuse to drink cosmos) Today I went to my parents lake house with my 3 year old and we just swam and hung out and had a nice dinner. My husband is a golf course superintendent and pretty much works every weekend.

    Sound like we have the same taste. No cows or lazy boys for me either. I have a collection of creamware in my kitchen and a collection or porcelain with pink roses in my office on as plate shelf. Mostly pitchers and sugars creamers ect. My office is my girly room.

    We are building a house which we just started to plan and I am starting from scratch. I have a few good pieces of furniture I want to keep. A farmhouse table and chairs with rush seats. A cabinet with glass doors and inlaid wood. I would live at the antigue market if I could. We are planning a girls weekend to a big one in Charlotte in Nov. I think 6 of us.

    I do love the BBC shows. I also like Decorating Cents when they have trash to treasure and repurpose old things. I'm not too big on contemporary. Your home sounds beautiful! Take care and I will talk to you soon! Lynn
  9. orachel

    orachel New Member

    Your weekend sounds incredible! Its doing stuff like that with the fam that I miss the most....just being crazy and lazy and fun together on the weekend! And now you've made me crave a cosmo like crazy, evil woman! lol

    Absolutely weird similarities in taste. I don't think i've ever run into a person with same love of Meshing styles as I have...and even same styles. I absolutely COVET your pink floral china.... One of my biggest current desires is a really great "mix" of different blue and white french china (I'd like something decent, not of the target variety!), but its so popular now that can't run into gorgeous pieces for $1.50 at garage sales anymore. Try $150. Oh well.

    Have a wonderful time on your girly vaca...sounds like my dream vacation! Enjoy, bigtime!

    But i hope I do get to chat with you before that....

    Wishing you health and hugs...
    Rachel
  10. ldbgcoleman

    ldbgcoleman New Member

    French blue and white. I love it. My kichen is actually blue and white with some yellow and green. Kind of gardeny. I always keep flowers on the table usually daisys. They last and are cheap!

    I love blue and white french. Also transferware blue and white. I love the English scenes. You are right it is hard to find things now since ebay has become so popular. I am happy with pieces I like even if they have a tiny chip. That gives them character. I don't necessarly have to go for expensive pieces. Unfortunantely when I pick up a piece I love to look at the price it is usually expensive. I guess I have expensive taste.

    I just love the treasure hunt. I love to find the perfect little creamer for 8 bucks. I buy the little things. I bought a bunch of hankies with floral designs for 4 each and filled then with lavender. I tied them up with ribbon and tucked a silk peony in and gave them to Grants teachers. They loved them and it made their Weds. You can still find special little thngs cheaply. I wish I could sew! I would turn the rest into pillows!

    Sorry so long but theis is my favorite subject. My sister in law collects Majelica oyster plates and amber depression glass. Those are totally unapealing to me. Who know what draws us to ceratin things???

    By the way I also married the love of my life after being apart for 7 years. We met in 1990 dated until 1994 and got back together in 2000. Noone else I ever dated even compared but he had to grow up and get his act togther and the time wasn't right the first time we dated.

    I also love to talk and never shut up! By the way I would have never gone out with my friend like that 5 months ago. The night of my birthday April 18th my friends took me out and it was fun but I felt awful and was in the bed for three days afterward. I know it is so easy to get depressed about all of this and so difficult to keep up a positive attitude! I really hope some of the things you are trying work for you!

    Please take care! Maybe we can go antiquing when you get better! Cindycor and I are planning to ski at Banff this winter when are better so why not antiquing?? Lynn