Anyone from Rochester, NY area

Discussion in 'Fibromyalgia Main Forum' started by HeavenlyRN, Feb 4, 2010.

  1. HeavenlyRN

    HeavenlyRN New Member

    Just trying to find people close by to share information about local doctors, treatments, etc.

  2. Janalynn

    Janalynn New Member

    No help with Dr.'s - sorry, but I used to live there for many years!
  3. Asatrump

    Asatrump New Member

    Syracuse is about an hour to an hour and a half on the thruway.

    Basically here we have one group of rheumies.... different offices but one brain if you get my drift. Think they all golf together. I have tried three of them and a couple orthos. Fired every one.

    I finally told my GP that I was dumping ALL of myself in his lap: bp, pvcs, ibs, ulcer and fibro. I find he HAS to listen and needs to pay good attention to meds and how they could interact etc. He has to look at all of me, not just parts, and I find this is really to my benefit.

    I asked him one time if he wanted me to put his name on a list of acceptable fms doctors and he said he would kill me.

    Together we have worked hard to balance my problems, he also cares for my husband.

    There is a local group that meets I think at the library. I have never gone as I am not a joiner and kind of make my own path.

    Even my doctor doesn't approve of the way I take my meds , but as long as I don't take any more, he says ok whatever works that he can't argue with success.

    About six years ago during a PT time, I saw a woman get in a tub of warm water. I thought how heavenly that looked. I actually had my doctor write the word hot tub on a prescription paper. (was able to deduct something for taxes ) Yes it was expensive initially, but now after so many years think of the money I saved in trips to pools , pt etc.

    I have a piggy back garage and the hot tub is in the back stall. So no matter wind, pouring rain, etc. I go in that tub for 30 minutes every morning. I swear it is what keeps me mobile, and it feels wonderful. I don't have to tell a massage person where to rub , I can just position myself in front of a nice powerful jet. I set the temp to 99 so it does not go over 100, and even when the garage was 14 a couple weeks ago, the temp is good , I do not get overheated or send my bp up.

    I am 65 in case you are interested.

  4. HeavenlyRN

    HeavenlyRN New Member

    A hot tub. I am so jealous! Luckily I still able to get in my bath tub (on a good day) but I think I husband would have to blow in a straw for me to get any benefit from jets!!

    I like your idea of putting everything in the lap of your PCP. When I started having increased problems several months ago, I began to see every doctor in Rochester. And had 3 ER visits. I have now been on disability for 7 weeks. I'm 55 and up until 7 weeks ago was working full time (I'm a hospice nurse). It just seems like everything takes so long. I start with Dr. A who says he can't help me, but maybe Dr. B can. I call Dr. B and find out that I can't get an appointment for 2-3 months. When I finally DO see Dr. B, he tells me he can't help me, but he's sure that Dr C. can. And on and on and on it goes.

    I asked my doctor to fill out a "medical necessity" form for a "Cuddle Ewe" underquilt. I've heard pretty good things and my insurance will pay for the bulk of it.

    I found out that we have a local support group here. Like you, I'm not much of a joiner and have found that other support groups have attended over the years just end up being a "whine fest!" This Tuesday, however, they are having a "Yoga for people with fibromyalgia" demonstration. I'd like to see what that is all about.
  5. Asatrump

    Asatrump New Member

    I think there are a good percentage of folks here who have various doctors for various body parts. I just got really sick of that routine, blame him, didn't get info from X and stick with this one guy. I don't think he likes having to take care of ALL of me, but duh, that is what a GP does.

    Our insurance changed Jan 1 and I had to start mail order meds. ackkkkk had 15 including some premarin cream and some allergy meds only used seasonally. But the only hard core meds I take are valium and ambien. I have refused his offer for stronger pain meds, as I know once on that road , the road merely widens.

    I honestly have to say the hot tub helps more than anything. Right now my body is warm and relaxed, this will last about 2.5 hours. Of course if I choose to get naked again I can go back in, but usualy my hair gets wet so I stick with once a day. When you mulitply out the cost of co pay for PT or water therapy.... it becomes more interesting. The benefit over a bath tub with jets is that the water does not cool down, but stays constant. You can sit in a hot bath and after 20 minutes the temp is much less.

    Let me know how you do with the yoga/local club. Over the years I have a lot of email friends, from back in the days when you could exchange addys, and we help each other tremendously, mostly by listening and by each other's experience both medically and in life.

    Hospice work is something most admirable and it takes a special nurse, aide etc. My son gives radiation and cyber knife treatments in Johnson City, must be about 15 years now. Periodically I see him want to give up and run, emotionally it becomes so draining. Plus all the horror stories you hear of MD's collecting insurance $ up to the very last 24 hours. My daughter is an RN and worked 3 years in a nursing home.

    I hope I never end up in a nursing home. I have entertained there, doing sing alongs for years, although totaly retired once I turned 62. I know all the wonderful things they offer, I just don't want my name on any door. My son also happens to be #1 trap/skeet shooter in NY state and he has assured me when I become a total PITA he will take me on his mountain and won't miss. Kind of a standard joke.

    Yes, I often use humore with my friends, what else is there?

    I suspect the cuddle ewe will feel good for awhile... I got a featherbed, that also felt good about the first five minutes until my double chinned body flattened it. I did buy at BJ's a couple years ago one of those 2" foam......... phooey, there goes my brain again. I can be in mid sentence and suddenly the word goes poof! insert giggle... I shall think of it later.

    Husband and I both are retired and he helps me with anything that requires bending or using right arm, like mops , vacuums. We never know what life has in store. He retired after teaching school 41 years. And 27 days later peed blood after we dined out. We went to urgent care thinking UTI, and came out 3 hours later with a diagnosis of a huge tumor, definitel kidney cancer.

    I am sorry to others reading this, I am getting too personal and off the beating track of med problems for fibro. perhaps a different section of forum or something.

    Give a bit of thought to combining doctors... they only want $, being a nurse you know all that.... My podiatrist doesn't give a hoot about my spinal stenosis, etc.

  6. HeavenlyRN

    HeavenlyRN New Member

    Asatrump - I don't think we should ever have to apologize for going "off topic" in a post Gee, we're all human here and that's just how conversations go sometimes!

    I worked in long term care for about 12 years before I became a hospice nurse. I too never want to end up in one. Once my son came to visit me at work (this is when he was in his teens). Later that night he said, "mom, I promise I will never put you in a nursing home!!" I thought it was nice of him to say that, but I would never hold him to it. I might cut him out of my will, but I'll never hold him to it! Just kidding!

    Yes, they are depressing places. I believe, for the most part, that the people who work in nursing homes have the best of intentions. The problem is funding. Almost every department is short staffed.........except for the administrators!! Oh - don't get me going!

    I am sorry to hear about your husband. It is amazing how our lives can be turned upside down so quickly. My mom also had kidney cancer. She was one of the fortunate ones: had her kidney removed and has been OK since. However, she now has dementia. It just never ends, does it.

    Well, keep enjoying your hot-tub. I'll think of you when I'm squeezing my fat butt into my bath-tub!! :)

  7. toddm

    toddm New Member

    Hey Heavenly I'm from Rochester also, I've been through the same list of doctors as you I'm sure. This flair up hit Nov 2005, since then I've seen 28 doctors. The good news is I have found a couple that were helpfull, if only to listen to my requests and run tests that I've asked for. In February 2009 I was able to get a Tilt Table Test at Strong which was positive, so I do have dysautonomia. That then lead to a geneticist who would do mitochondrial testing which also was positive. If you'd like to talk off line let me know I can give the doctors I've found to help, also a great place for sleep study, and GI testing you'll only get at major clinics. I hope you can find someone to help, and that you feel better soon.
  8. Janalynn

    Janalynn New Member

    I'm sorry about your personal troubles, but I must say, I loved your post for your humor...humor does make everything a little bit lighter when we sometimes desperately need it to be!
    How is your husband now?
    I'm not a big hot tub fan, only because they I could never stay in them for very long, but I do bet they would be great for my body. I do have a fantastic tub in my house but I never get in that either because I hate getting out (too cold) I'm weird.

    Okay, we've got a few here from Rochester! Like I said I'm not there any longer, but have GREAT memories of my early twenties on the Bay (Dad used to live on the water). All of our friends (my husband and mine) had boats,...we didn't (TOO BAD!)
    I was born there, moved away w/my family in the 4th grade, then moved back when I was 20 -lived there til 29. Got married there, had my first son. Really had a great life there, missed it a lot for a long time when we moved.
    My son was born at Genessee. Still have family there. What part do you all live in?

    YES, BLESS anyone who can be a hospice nurse. What compassion you have. I don't know how you cannot fall apart. I would assume you have to become a little immuned to things to survive, but in a way, I was always sorry to hear that.
  9. Asatrump

    Asatrump New Member

    Snowing right now, but mostly all these biggy storms are missing us, highly unusual. 9 am and only checking email, then project de jour is to clean heat ducts. I try and do whatever physical work I have pre hot tub.

    I set my tub at 99 so the highest it may go is 100. After spending half an hour in 99, getting out isn't so bad and I have less than a dozen steps to get back in the house. I go put the lid down later or hubby does it. I wish everybody could have a turn with the massage feeling of it.

    I haven't posted on the worship board for a couple years when trouble brewed and I dropped out. But I use the hot tub as my "cathedral" , dim light, only noise is water, no bugs, rain, etc. I use it as prayer time, and worry time. That means at the end I truly benefit from that single half hour.

    My husband had a 7.5 tumor in his kidney. They removed the kidney and adrenal, had to make the incision much larger , and needed a bucket not a kidney pan, as it weighed 15 lbs. Long story about him, but he is doing ok, his scans in Dec. looked good.

    What I have doesn't kill people, but it makes for a lack of quality in my life. I have no handicap parking, I can walk, I look normal, (not good but normal) and I can function as matriarch. Wondering what I look like? picture gray hair, a couple chins, big chest that gravity has ruined, daily jeans, finally found some with skinny legs but room for tummy, and my beloved crocs. Next to my hot tub they are my next best therapy, cure. Wear the 24 hours a day.

    Two years ago I heard a rumor that Crocs were going out of business due to knock offs, lolol so I ordered six pair of navy blue endeavor crocs(no holes on top). Hair kind of crispy from perms, so going through the misery of letting it grow, lays flat and lifeless... giggle, kind of like me.

    Maybe one of you is clever enough to figure what part of the forums we could take this conversation as I think it is getting more like email and less like medicinal info.

    ** for those looking for med info: crocs help feet!

    Where are you now in the process of disability? Or are you hoping to return to work? You didn't say what kinds of doctors you see.

    At one point after my GP took over all but my GYN stuff he said you take too many pills. Duh, I absolutely agree. Since you prescribe them all, you tell me which ones I can stop. Quiet...... well, uh, you will be on all these the rest of your life. Then: don't ever tell me again I take too many pills, I didn't just throw a dart at a chart and decide what or how many I should take.

    sorry, I never proof read stuff, probably makes me stupid. tee hee, retired teacher among other things.
  10. HeavenlyRN

    HeavenlyRN New Member


    I would love to continue "off-line" anytime anyone wants to. However, I hear that we are not supposed to post our e-mail addresses. How do we get ahold of one another if we so desire?
    Since I rarely get out of the house anymore at this point, I would love to be able to talk to other folks. And it would be nice to have "pen-pals." Remember those? I think I had a pen-pal somewhere in Europe. I have no idea how we became connected, but it was fun. I also had one from somewhere in the states. Of course, we're talking decades ago, when stamps only cost 5 cents or something!

    Toddm - I would love to glean as much information from you as possible. My rheumatologist's nurse practitioner has been the one ray of sunlight in all of this. I believe that she truly does care. (Oh, my new pain doc is good too). Anyway, if you want to e-mail me, we could share war stories!!

    Janalynn - I lived by Strong Hospital until I was in the 3rd grade. We then moved to Pittsford. I grew to hate Pittsford. I'm not sure what it's like now, but it was truly snobsville when I lived there. I was in my mid-teens at the end of the 1960's and Pittsford was a very unforgiving community: hippies were bad, black people were bad, etc. I was not on the honor roll, wasn't a cheer leader, wasn't on any sports get the idea. I think I had 3 close friends and that was about it. Never even went to any of my proms!! Can you believe it? I mean, I was quite a babe back then........just kidding. More of my friends lived in "the city" so I was rather looked down upon. Needless to say, high school was not the high point of my life!

    I live in Webster now. I like it. Nice people. We're far enough away from any of the major malls that we don't have to deal with the traffic. Although, Ridge Road is becoming a little built up for my taste. Gosh darn......we even have a Target right down the street. Eeee-ha!

    Well folks, think I will end this because I took an oxycodone a little while ago and I'm feeling pleasantly goofy!

    Please feel free to e-mail me any time.


    [This Message was Edited on 02/10/2010]
  11. Janalynn

    Janalynn New Member

    Small world, I lived in Pittsford as well. Lived in Greece when I was little - not far from Ridge Rd.
    One of my dearest friends lives in Webster.

    We can go to the Chit Chat board (not chat room) to start. You can "chat" there, like this however.
    Do you know where that is, it's one of the choices of Message Boards - just start a post - we'll follow!
  12. HeavenlyRN

    HeavenlyRN New Member

    Janalynn - funny you should mention the "chit chat" board. I just went in there about 10 minutes ago. I will definitely be going there again - lookin' forward to it!

    Thanks and see you there.
  13. toddm

    toddm New Member

    Hey Jan,

    Sorry I was thinking I was on the other board, there we can PM other members. I've never been in the chat rooms before but can check it out. Are you on any other boards?
  14. HeavenlyRN

    HeavenlyRN New Member

    I just sort of "discovered" the "chit-chat board" tonight. Think I'll make it a habit to check in there every day too.

    What is a Tilt Table Test? I'm not familiar with that and what it checks for. I'm like a sponge......I'm trying to suck up as much information from this board as I can!

    Thanks - Jan

    ps.....we'll figure out a way to get in touch with each other. I was disappointed to find out that we're not supposed to put our e-mail address out for everyone to see.

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