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  • MakinIT
    replied
    Got a few done...It's 1:00 AM, my tummy hurts something else. I want to sleep but can't ...got to get up in, oh, 5 hours to get kids moving and then go to docs. have some stupid Social Security exam i have to get done. My husband uses this (tracey home) now as a reason to just get up and run to work..I get everyone up. Oh well. Theoretically, I've had the whole weekend to rest. I even updated my IPOD so I have new music on it to listen to. (THe BEST gift my husband has ever given me.)

    Good night...I hope you are getting a good one....

    Leave a comment:


  • Julie Smith
    replied
    hey there

    T,

    Sure do wish we could pm too!!! My Dad is78 and doesn't drive unless he's with my mom. Mom is 68 and scheduled for cataracts surgery 4/13 and like i said before they live 3 hrs. away, so they're out for transportation and tlc. if worse comes to worse i can take a taxi, even if i drive there i my own car and taxi home. i pray to God facility is worked out so procedure can be done at approved facility. I'm sure that will make me really depressed, so i'll call some of my friends from work when the date is firmed up and ask them. i just hate asking anyone for anything, ya know?

    I can't lay on my tummy, period. When acupucture i lay on my back and needles go into my belly. Everyone left by 3 and i went right to sleep until 7. it was great seeing my folks, haven't seen since xmas, my daughter was just here last weekend!

    did you get your chores done before family arrived?
    my home is just ok, not spotless but neat except for my office which is a disaster.

    ok, talk to you later,
    J

    Leave a comment:


  • MakinIT
    replied
    WHAT?

    GeeZ Julie..I wish I could PM you. I'm so sorry you can't get that nerve block done because of laying on your tummy....Is it a fear factor or just complete discomfort in your belly? sometimes I find laying on my belly feels good if there is a pillow and a heating pad under it.

    As far as drivingyou goes...You can't get your mom or other family member to drive you? THAT sucks big time. My friend who lives in Clearwater works at one of the hospitals in Tampa (her hubby works at another) Makes me want to call her and ask her to get you and take you to your appointment andhome. Doesn't your family believe you are in such dire straights? Or do they think this is some game you are playing? My folks don't make it over to me because mom is afraid of traffic and dad is losing his eyesight, slowly to Macular degeneration. Stuff is wierd to him, so he doesn't care to drive too often. If I can get to her place, she'll take me to the hospital fromthere (it's only 10 minutes) I have the same drug problem though, I nod off while driving and have nearly gotten into some accidents and I have sworn I willnot hurt anyone else due to my selfish need to drive. Sucks. So I have to get hubs to drive if I can, or father in law, who scares the living crap outta me when he drives. BTW my father in law does watch TV very loud and gets irritated when we all ask him to turn him it down, he's like " but It's already low..." maybe if he could get that hair out of his ears, eh?

    oh well, need to take a shower and try to tackle the bathroom before family gets home. I said I'd do it but I don't want to...:p

    Take care: Tracey

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  • Julie Smith
    replied
    not stomach!

    T,

    That shows you what a hurry I was in, of course i don't lay on my stomach! I lay on my back for acuptucture! In fact, when the pain dr. does sacral nerve block he wants me lay on my stomach and I told him no way, no how. He replied they would then have to put me to sleep, when sleeping roll over on stomach and do procedure. He also said more dangerous, more meds and more time. Told him I don't care when I'm sleeping, I just can't lay on my stomach,when I'm awake....period...too painful. His office called fri. and said my ins. doesn't cover the facilities where he does the procedures, and ins. would treat like out of network........GRRRRRRRRRRRRRRRRRr .told nurse my I just can't do. My deductable for out of network is $1500, I'm already in the hole big time. Hopefully, he can perform at another facility or????Oh gosh, what am I going to do? Just when I think I may get some relief.

    Really nice afternoon with my family and dinner too. Of course we don't talk about ic, they just don't accept, etc. If I get procedure I'm just wondering who I can get to drive me.

    Anyway, hope your weekend is a nice break with the family gone, except for father in law. Does he like to watch tv like my dad? on the highest volume?

    Have a great sunday,
    J

    Leave a comment:


  • MakinIT
    replied
    Julie...just a question

    Hey Julie

    How do you lay on your stomach and the accupunturist puts 'em in your belly? Is it an odd contortion you do OR are like, mystical, and can lay on needles....? I'm just trying to picture it!!!!!!!!OW. sounds painful, those suckers hurt. (I'm assuming you boo=booed somewhere in your last e-mail.

    OMG my father inlaw has had the TV on with NCAA basket ball all day. I'm glad I have some reading material now. (rest my family is gone until tomorrrow) I'm really glad your family is coming out...I don't think mine would and they only live across town. I'm sorry you're hurting. Maybe a visit with your family will shake away the loneliness.

    Have a nicenight.-T:blink:

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  • Julie Smith
    replied
    pt/acupucture

    Hey T,

    Sometimes I do surprise myself when I'm funny!!! Honestly, being single I sure wish I'd get some action down there!!!!!!!!!!!!

    Anyway, like I said before, my chiropractor does my acupuncture. I lay on my stomach and he applies the needles directly into my belly and down my right leg all the way to my ankle. I'm amazed how much better I feel afterwards. Like you said, relaxation also contributes a great deal.

    My parents and my daughter are visiting me this weekend to celebrate my birthday which is next weekend. My daughter attends college and my folks live about 3 hrs. away. I always go visit them and when I told my Mom I couldn't bc I wasn't feeling well enough to drive that distance and also bc when I'm taking medication I simply can't drive. I was totally shocked when she said they would come here. That was after I cried and said I was so hurt etc., bc they always fly to visit my other siblings.

    Gotta run,
    J

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  • Julie Smith
    replied
    pt/acupucture

    Hey T,

    Sometimes I do surprise myself when I'm funny!!! Honestly, being single I sure wish I'd get some action down there!!!!!!!!!!!!

    Anyway, like I said before, my chiropractor does my acupuncture. I lay on my stomach and he applies the needles directly into my belly and down my right leg all the way to my ankle. I'm amazed how much better I feel afterwards. Like you said, relaxation also contributes a great deal.

    My parents and my daughter are visiting me this weekend to celebrate my birthday which is next weekend. My daughter attends college and my folks live about 3 hrs. away. I always go visit them and when I told my Mom I couldn't bc I wasn't feeling well enough to drive that distance and also bc when I'm taking medication I simply can't drive. I was totally shocked when she said they would come here. That was after I cried and said I was so hurt etc., bc they always fly to visit my other siblings.

    Gotta run,
    J

    Leave a comment:


  • MakinIT
    replied
    Julie

    Hey Julie
    Your comment to the PT that "she has been where no man has been before" was pretty funny. I have to say that laying on my side, nekked from the waist down as she is pulling apart my cheeks in search of the rouge electrode, the same thought crossed my mind. (I simply squeezed my eyes shut and I believe she super glued the damn thing to my anus...at least when she took it off at the end, I about went through the ceiling and yeeeeowched at her) Very very few people are allowed in that area, including my husband. (I really hate it when you are having an "exam" and the doc is so busy chatting with you he/she forgets to tell you he/she is "goin north" from the southbound lane. ) That's another one that medical personnel wind up peeling me off the ceilling.

    I've had a coupleof accupuncture appts in the last month. This gal is one who used to treat me for migraines. She's doing wonderfully with the IC treatments although frankly, I think its just the total relaxation that is helping. But she likes to stick a couple of needles right where the tip of my pubic bone is...Hence....trying to find the stupid things afterwards is like finding a needle in haystack...so to speak..and she doesn't like her patients pulling out their own needles. I've done that in the past and gotten hollered at so when I asked if I could do those she said "no, of course not", and the quest begins....I told her those needles should have little orange flags on them so they can be spotted easily amidst the brush...."sigh" Never thought my body would be such a public thing and that every medical person in the PNW would see me in such comprimisng positions.

    Take care ...have a nice day today and tomorrow...and so on...T

    Leave a comment:


  • Julie Smith
    replied
    turkey treatment!!!!!

    Hi Mimi,

    Thanks for sending me a pm. I guess we're all in the same boat while undergoing pt treatments for pfd, exposed. I'm glad they work for you as well.


    It's the middle of the night, just woke up to pee and can't go back to sleep. Hope you all had sweet dreams.

    Julie

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  • Mimi-in-Chicagoland
    replied
    I did this treatment as well and it helped a lot. Watching the monitor helped me focus on what I was really doing. My good friend has IC and has done this. We affectionately refer to this as "the turkey treatment". :eek:

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  • Julie Smith
    replied
    pt

    It is very normal to be sore, in pain after first several visits to pt for pfd. Important to share this w/ pt, you don't need to suffer alone and pt literally has a bag of tricks ... lots of other things they can do. I was very sore at first.,felt ok when there and like wow, i'm actually doing something to help myself. that was until a few hrs. later, and then yikes! i phoned my pt and she said use alternating ice/moist heat in painful areas. the pain increased and lasted a few days. i did continue pt, we just cut way back and built up very slowly. evidently my pfd is really tight, holds all my stress and one or two treatments wasn't going to heal me. so, we went slowly. also, i had been basically sleeping, or housebound for 5 mos. when i started so i was very weak. you need to build up.

    your pt will work w/ you, so tell him/her. they want you to feel better too. they send reports to dr. and so it's best for them in that sense and also from a human standpointe.

    good luck, try not to be embarrassed, we all went through the same thing. i told my pt with the way she had me on the table and applyed and applied electrodes she'd been where no man had!


    oh, and yes i was able to watch the machine while i contracted, it was pretty cool.

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  • Solfish37
    replied
    My PT put the biofeedback electrodes right on my anus eek but it gave a very good picture of what my pelvic floor muscles were doing between the contraction and relaxation. When you relax, are you actually pushing out...(my therapist says it's like you're passing gas) Its almost the opposite of Kegels. I hurt after but was ok once I did the stretches I needed to do and put some heat on my belly I felt better. Please keep trying, at least a couple more times just to show yourself you gave it an honest effort. (Believe me...the finger in the wazzu is not my favorite activity but it does help after I whine) You also need to let the pT know when it hurts, and where it hurts while she is working with you.

    Good luck and don't give up...Its the first step to getting yourself off the couch and back to some exercise. I'm now at least able to ride a stationary bike for 10-15 mins, do about 5-6 yoga stretches, and a Tai-Chi routine. I try to do this 2 times a day...I'm classified Severe IC due to my pain but I am bound and determined to get moving. I hate this . As it is, I still have to sleep for about 16 hours a day/night so I try my best to get up and do something positive when I am up. It's all baby steps. baby

    Please don't get me wrong...I'm not lecturing or trying to make you feellike something is wrong. Everyone has such a different perception with this disease. I just found i had to go through some pretty serious emotional "Yuck" before I could accept that some pretty painful stuff was going to have to happen. And I now have a lovely Physical terrorist who is very good with me...knows when I'm just being lazy and when I really am in pain.

    Best to you, I really do feel your pain.....Tracey

    Leave a comment:


  • Zookeeper
    replied
    I am going to pt for this too and have had a hard time with relaxing afterwards also,I had to cut back to and am still working on this one.I know it is a hard thing to do.
    I did get to watch when I had mine too.and no probes were used on me either.
    I know I have shown improvment in some areas and think it was the best thing my uro ever suggested so far.I just strated up with a TENS unit,It's not as good as the one pt uses but I do like how well it works for me.
    Best of luck to you and I do hope things get beter for you.
    Take care.Love always, Zookeeper Kim

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  • Marigold
    replied
    I experienced this too before I learned about trigger points.

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  • hillio75
    replied
    I did biofeedback training with a PT for about 6 months. I also have PFD. My "resting" muscle tension is 4 times higher than normal. Like others said, my biggest problem was learning to relax my pelvic muscles. I use a probe during biofeedback therapy and watched the results on the computer.

    For me, it does seem to help. But it seems to be one of those things that it takes a long time for it to help. And you have to keep it up every day. It is hard to do sometimes.

    If I am in a major flare, I don't do the kegels. Sometimes I just try to stretch my pelvic area with plies (sp?), which my PT recommends.

    It wasn't a miracle for me, but I do think it helps.

    Nicole

    Leave a comment:

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