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  • Ok..so I've used ADA and it's worked...but who knows fer sure? I know it fall under a law know as section 504 of the American with Disabiliities Act....I will read it more closely to see about this. (I'm a special ed. teacher and I have to worry about making sure the law is followed for my kidss....when I work..)

    Any feedback on that would be good, and I'll look into it as well.
    I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

    Medications I CURRENTLY take:
    90 mgs Ms contin (45 mgs Am/PM)
    Percocet as needed
    Topomax 100mg day
    Ambien 10 mg bed
    desipramine 25 mgs




    If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
    Albert Einstein

    Comment


    • Dear Freckles,
      It Was So Sweet Of You To Reply To My Post When You Have So Much Going On With You. Have You Thought About Filing For Disability. It Would Help You Out Money Wise, But You Might Also Be Eligible For Medicaide. Or Maybe You Can Get Your Husband To Continue Your Insurance, As Part Of Your Settlement. My Family Has Suggested That I Should File For Disability, But I'm Not Ready To. In Order To File I Would Have To Admit That Ic Has Won, And I'm Not Ready To Do That. My Family Is Getting Tired Of My Being Sick, And I Feel Guilty Because I Can't Do Everything With Them. So Than I Force Myself To Do Whatever The Family Is Doing, And Than I End Up Over Doing It, Which Than Makes Me Flare. It Is A Terrible Catch 22. This Disease Is So Hard To Explain To Your Kids,and Family Members. I Hope That Things Start Getting Better For You, My Heart Goes Out To You. Keep In Touch And Let Me Know How You're Doing.

      WENDY
      ALL THAT IS GOLD DOES NOT GLITTER, NOT ALL WHO WANDER ARE LOST.J.R.R. TOLKIEN

      Comment


      • I agree with you I'm not ready to throw in the towel and be labeled disabled. My divorce attorney asked me today if I had thought about doing it and I said No I do not want to be disabled. I do need to ask my attorney about the continuance of my health insurance, but I doubt I'll be able to get it. I am looking for something part time, but I really don't know how I'll even be able to do that. I have some good days, but most are bad. I'm trying to start an accounting business from home and just take on a few clients. I'm good at what I do, it's just so hard to sit at a desk all day. At least at home I can lay down when I need to or throw up.....
        This really sucks. :-(

        Comment


        • HI all, I did finally decide to apply for Disability about 3 years ago and I got it about 18 months ago, it was really hard for me mentally as well, it was a hurdle I had to get over the "disabled" label. But it is such a relief to have insurance, since no one would cover me even if I could of held down a job.
          But it can take awhile to get so plan ahead and be prepared (look on the boards under disability/SSI for suggestions)
          It is a very personal thing,each one in her own time, so go with your heart and when you are ready you will know.
          But keep a journal and a pain/voiding diary and write in your diary when you go to a DR and what happens and how you are feeling, etc. It is easy to forget all the stuff
          Sonja
          Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
          Support American Cancer Society Relay for Life
          http://Relayforlife.org
          Living life on hope and a prayer.
          To read me and my family's story
          http://ic-network.com/patientstories/sonja.html
          Spinal surgery 04/06
          Interstim implanted12/04
          interstim removal 12/05
          Hysterectomy 1998
          Bladder surgeries due to hysterectomy,'98,99,00,01
          DXx with IC w/ Hunners 1999
          Chronic Pelvic pain
          Chronic fatigue
          Fibromyalgia
          Depression/post traumatic stress syndrome
          IBS
          Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

          Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
          Weekly or as needed instills w/ elmiron/lidocaine/bicarb

          Meds:various pain meds,Soma (muscle relaxant)
          Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
          and a few others I'm sure,depending on how good I have been on my IC diet.

          Trying to keep a positive attitude, in a negative world.

          Best treatment of all, Good Friends who Understand

          Comment


          • I do ! Bladder has Been out for 21 Years now. And the IC is just attacting everything in its path. Been through too Many to count!!!!!!

            DebieD

            Comment


            • I am also in pain almost all the time. I say that, howevever, when taking the right meds I can eleviate that pain for a while, but I seem to have breakthrough pain a whole bunch. I am on quite a list of meds. The main ones being fentanyl (duragesic 50mcgs), methadone 10mg-(2 at bedtime), lortab 5/500 2 tabs 4 times a day. Dr just changed it to 10/325 because she was afraid I was getting to much acetaminaphen. I take valium 10mg before bed, and amitriptyline 25mg before bed. I also take elmiron. Dr. just tried to change me to 75 mcg, of fentanyl every other day. I was sick with nausea and major headache. Luckily it was over the 4th of July long weekend, and I didn't have to be at work. I spent 2 days laying in bed. I am trying to decide whether to give the 75 another try, but I hate to think about wasting a few more days feeling so bad. Maybe it just takes time to get used to it. Does anyone else take 75mcg of fentanyl patches? I would love to hear from anyone. Did you have a hard time getting used to it? Any side effects? Maybe it was just a coincidence that I felt so bad.

              Comment


              • Freckles,
                Please PM me. I have some info that we have in common to share. I would be glad to be the ICN Florida Pain Advocate.

                Hugs,
                Barb
                (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                :angel: IC Angel Volunteer Coordinator :angel:
                :) Contact me via PM or e-mail if you would like to help
                I have learned all about life in 3 words: It goes on! :D--Robert Frost
                PCOS 7/85
                RSD 7/94 :headbang:
                Endometriosis 9/98 :toilet:
                Antiphospholipid antibody syndrome 9/99
                Kidney stones--too many to count
                Factor V Leiden mutation 10/02
                IC 6/03 :evilsmile
                Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                "Spirit is an invisible force made visible in all of life"--Maya Angelou
                "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                Comment


                • I wrote a very long message to Freckles and Wendy and I guess the computer thought I was being too long winded so I'll shorten it. File for the SSD. Just make the call, the people are nice they will send the forms. See..chronic pain patients do much of what terminally ill patients do, except, well, die. we go through denial, anger, bargaining, depression and acceptance. When a terminally ill person reaches that point, they are at peace. no one is really expecting them to "get on with it...aren't you better?" about that time for me I get that response because I seem peaceful, and internally, I have accepted the pain and stopped fighting it. Of course, Ihave the help of controlled 2 drugs, sometimes when it's reallllly bad I use a little bit of "herbal blend..natures pain relief"....But it is very hard to work on Morphine, valium, Topamax...percocet for breakthrough. Then I get guilty, guilt turns to anger and denial, then depression. I'm very good at that in one day.

                  The man I married is a good one. However he is working his ass off to make up the 1500 dollar difference in my disability pay and what I should be making. He's an incredible speaker and in addition to teaching, he is becomine a regionally and slowly a nationally recognized speaker for kids who are gifted. (when I was teaching I taught severly special ed...ha, ha, ha) he is exhausted, health is not good and snapped at me one day that he didn't realize marriage meant celibicy. (whole 'nother issue because I have tried alternate and new stuff...he is in a rut)

                  I started applying in May 2003. My hearing (step 3) is in September. This Year. get moving and get started.You don't know what will happen with your husbands job, with your job, marriage...and the paperwork is laborintensive.

                  Good luck
                  I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                  Medications I CURRENTLY take:
                  90 mgs Ms contin (45 mgs Am/PM)
                  Percocet as needed
                  Topomax 100mg day
                  Ambien 10 mg bed
                  desipramine 25 mgs




                  If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                  Albert Einstein

                  Comment


                  • Thanks MakinIt,
                    Maybe I should start with the paperwork just in case. I know I can't go back to work full time, I just can't. I have come to realize that. I would like to find something for a few hours a week just to keep me going. I get so depressed staying at home.

                    I could kick your husband for the remark. I do think it is hard for our partners to understand what we feel, what we go through. We can't fault them for that. I'm in the middle of a divorce but I can't put all the blame on my IC. I just had a creep for a husband. I'm praying that God will send someone wonderful into my life. I'm willing to wait.

                    Maybe your husband should look on these boards when he's feeling left out and maybe then he'd try to be more understanding. We have to understand too that sexual desire when you're healthy is a strong need. So we have to be understanding as well and eager to please in other ways. I know even that's hard when you are hurting and have no sexual desires at all. It's been a while (too long) since I've had sex, but I remember the pain. Having intercourse in itself didn't hurt, but I usually paid for it for about 3 or 4 days afterwards. NOT FUN!!! Luckily for me my husband was more interested in his porn magazines, his porn movies, his porn internet, than he ever was in me and that started 10 years before I even got IC. It's an addiction for him now. It's really kind of sad.

                    I think I will take your advice and as soon as I get all this financial paperwork done for my divorce I'll start the disability paperwork. I'm crying just thinking about it. I'm 46 years old and unable to work and the thought just kills me. It really does.
                    Karen

                    Comment


                    • Karen, I'm so sorry for what you are going through, and I think you must be very strong for dealing with it so well.

                      I wanted to say, although you can't work full-time because of this disease, there might be a volunteer activity that perhaps you could do part-time, if you are well enough. I love my part-time volunteer job with the Red Cross, it's been such a blessing and comfort in my life and I feel so good about helping others. Even if you aren't well enough to go outside the home to volunteer, there might be some things you could do, like there are quilting groups, knitting groups etc. that make things, like blankets for wounded soldiers or newborn babies or things like that.

                      I was just thinking that it might help you feel more involved and connected, being part of something like that, because it's really hard when you are used to working, to be cut off from that and all the support and companionship that can come from that.

                      Blessings, and I wish the best for you.
                      Lori

                      Comment


                      • I'm glad you are doing that but at least call the 1 800 social security # to get it started...When you are divorced it will be a very long time before you see your SSD benis. Now working part time because you are bored...I don't know...You may not get benis. (My private LTD would kick me off the rolls) SSD, once you get it, does help you try to get vocational help and has a reward program to get you back to work but I don't know if you are hurting your case by working. I am curing the boredom that leads to depression by working in my daughter's school (which is hard because I am a teacher..to be a parent volunteer, cutting shapes and stapling packets is tough but I do it..at least to have adult conversation, and to see children...they also put me to work with reading groups when I feel up to it because of my teaching cert.) My husband is a teacher, so I work in his room a couple times a month. Depends on how irritated I am with him..ha, ha. I also volunteer with my mentor from Highschool/college days. She was my boss at a resident outdoor school program, during college I'd work as an adult leader for 8 week periods (when I had no money for school) so, I go work for her in her office (she's an admininstrator now) doing brainless things. Again, I try to get once a week.

                        As far as getting people to stand in our shoes...I've felt that way for a long time...but you know, when my husband said that...I suddenly stood in his shoes. He's right, you know. He has a healthy sex drive. He hasn't complained about much but he is exhausted, feels like I am distant because of the drugs, and it hurts to have sex, but I have told him to loosen up. He is sooo tired he just doesn't want to think about anything...He is a very stubborn, proud man. I guess that is what has turned me around and stopped my pity parties. For now anyway. I actually had myself convinced the pain was under control and started looking for work. Then I got 3 nasty flares (they lasted 4 days each) after that and, yes, it killed me. But I knew I can 't do the teaching I do, and be stable, I am a severe question mark...and all the admins know that. I'm 41 and unable to work. It hit me when I was nearly 39 that I couldn't work and I was hysterical. My husband didn't get it. He kept saying "but you wanted to be able to stay with the kids"...I'd finish with...yeah...healthy...

                        As far as porn...I think alot of guys have some. Mine has one mag he buys every so often. He knows if I find it, I throw it away. Not out of anger but because if I can find it, the kids can find it. I know he has stuff on his back up hard drive (ha, ha...I just made a bad joke) But I leave it to him. Men are proven to be visual when it comes to arousal...and since I'm usual KO'd, well whatever....I'm more worried about his health.

                        Anyway...get started on your paperwork...tomorrow morning. call the 1800 number. (look up under Social Security Disability home page.) You'll be glad you got started.

                        Tracey
                        I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                        Medications I CURRENTLY take:
                        90 mgs Ms contin (45 mgs Am/PM)
                        Percocet as needed
                        Topomax 100mg day
                        Ambien 10 mg bed
                        desipramine 25 mgs




                        If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                        Albert Einstein

                        Comment


                        • To be honest, I'm against porn. I think it has ruined so manly familys. It did mine. I know men are visual and I guess I really don't have a problem with them looking or having a playboy magazine or two but when your husband starts leaving his playboys opened to the centerfold on the back of your toilet and your little kids can find them, well that's a problem. I told him I didn't care if he had the mag's, just have the good sense to hide them when he was done. He used to fall asleep on the living room floor and for years I would go out there like the loving wife I was and wake him up and drag him to bed so he would get a good night sleep and only years later did I find out he was watching his porn movies out there. I walked out one night and he was asleep and his movie was still going. I felt so foolish. I finally kicked him out when he started taping porn movies over our family vacation videos. That was the last straw. I'm so happy he's out of my house, but now when the divorce is final I will have no health insurance and no income unless I can get alimony. I may even lose my house. I try not to look at the negative things and put my trust in God and know that he will provide.

                          Thanks, I think you have convinced me I should start on the disability paperwork.

                          Karen

                          Comment


                          • Don't get me wrong...I remember being 20 and finding out my husband looked at those magizines. It made me feel like I wasn't good enough, and that my husband wanted a woman like that. I felt like it was a vicious punch in the stomach.And yes, it has ruined families, depending on how the adults in charge are handling it. If the man is solely using it for sexual release, and/or the material is beyond the typical porn( that is, he is getting excited by child porn, or masochisitic or whatever wierd stuff is out there that I have never wandered into) that is a problem. If the sex life is healthly between partners and once in a while a guy looks at a magazine, well...whatever. My husband and I have a married best friend couple..very up and up. But Doug (the guy) likes to have what he calls "Hedos" every 6 months. Basically, 3 days of all his best buddies getting drunk, water skiing, camping, and looking at magazines together of women with big boobs. Apparently, guys do this alot. My husband found this stupid and has only gone twice. Doug doesn't understand why. (My husband isn't in to drinking to just get drunk and look at porn with other men...he thinks that's wierd, even though he knows alot guys do it) However, I DO understand he needs an outlet because I am so out of it or in pain. Our schedules haven't worked together lately, but we are going to work on it. like I said, if I find it, its gone. He just bought one magizine, hadn't looked at ( I could tell because it was so "new"..you know) and those aren't cheap. the last time I looked it was 10 bucks. It was tossed in the garbage because he didn't put it away right away. He just watched me throw it away. That's our condition and always has been. Besides. My 16 year has told him (innocently..not knowing her daddy looks at this smut) that she thinks its horrid and she's done research and found out even if we think they make the choice, often they are coerced into it,, and many of the girls are her age, just in a tough spot in their lives. (YOu gotta admit...my husband must be thinking, wow, I'm whacking off to potentially a child...EEEEEEWWWWWW...) They had that conversation a year ago (I overheard it) and have not found any material either on his computer (you can tell cause they send you such obnoxious emails and banners) or in hidy holes. Maybe that's alot of his problem. He has little sexual outlet.
                            I hope I'm not too blunt with you...this disease is so personal it brings out bluntness because of where the pain is. My husband and I used to have sex regularly. We had it the other night for the first time in a year. (go from 3-4 times a week to once a year...) He's miserable...Not because of sex but because he's tried to keep me up for so long he's with drawn into himself. I have to pull him out. I truly love him, but he just doesn't talk easily. he feels like its an attack.

                            Ugh..my upper pelvis is going bananas and dropping into my bladder. I feel like i have to pee but I am trying to ignore cause I just went. But I am hurting. It's that messed up of day, gotta take some pills.

                            take carel Happy paperwork hunting...oh..tip...while you wait for the stuff from ss to come, get HIPPA forms signed and get your records released to you so you can answer the stupid questions...besides, you have turn those in. Also get your pharmacy record.
                            I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                            Medications I CURRENTLY take:
                            90 mgs Ms contin (45 mgs Am/PM)
                            Percocet as needed
                            Topomax 100mg day
                            Ambien 10 mg bed
                            desipramine 25 mgs




                            If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                            Albert Einstein

                            Comment


                            • some offices charge fees for copies (which I understand) but if funds are limited like mine and just hard enough to feed kids and pay bills, then how can I ever afford to pay fees for all the many many Dr's I have seen? They didn't even have correct diagnosis for 6 years. How is that going to help? I just don't think these Dr's have unstanding how much pain I face daily. I don't know what else to do to get them understand and put it on paperwork etc. without hurting yourself? I mean my God, they ask u if u feel ok and tell u how they can see ur pain on ur face but not give u anything for pain or nerves. How can a poor person in pain afford Uro and Pain Dr's and etc? It took me 6 months to even get enough money $140 to my $400 visit which ran unexpected test. I got to go back next month, no way I can afford Pain Dr too! How in the world do u get expited ssa benefits? neighbor says her and her mom got it and money in hand within 6 months. long time ago but still. I have been turned down 2 times cuz wrong diagnosis. Sorry for rant just really fustrated now. I payed it in for 20 years plus without complaint from them, now that I need it and some people don't, I can't get it.......

                              Comment


                              • Racergirl, I read your post and I feel your anger and your fear too. I know that feeling of having to choose between medication and electricity or food and seeing the DR, it is awful and when you have kids like we both do, there is no choice, amother takes care of her kids need and well, we hurt.
                                But here are a couple of things that might help, first do you have medicaid, if you have minor children it is much easier to get than if you dont have kids, I dont know what state you live in, but here in TX if you get a DR letter saying you cannot work due to illness they will provide insurance and foodstamps and if you are single and under a certain income they will provide TANF(temporary aid for needy familes)which is cash. If you need it go for it, that is why the programs are there for those who have the need.
                                Also most cities have programs to assist in medication or bills such as elecrricity during the heat of summer. Alot os states are using the phone number 211 which will direct you to getting any benifits you may be able to get.
                                As for SSI, I got mine, but was refused the first time (normal) and the second time I got it in only 2 months, but I was VERY prepared, with documents,RX records,everything I could think of I wrote on those forms, I even filled up the back side of them desrcibing in great detail what my life has become, what I can no longer do, every pain and how bad it is, I added copies of my voiding/pain diary etc. Also I got a Disability package from the ICA which helped alot. I am not sure if the ICN has the same type of personalized Disability package, but you can check. I think I paid about $40 for the package, but it was worth every dime. I sent all that in and the package tells you how to fill things out and,bam, I got accepted.
                                I hope this helps a little. Hang in there,
                                Sonja
                                Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
                                Support American Cancer Society Relay for Life
                                http://Relayforlife.org
                                Living life on hope and a prayer.
                                To read me and my family's story
                                http://ic-network.com/patientstories/sonja.html
                                Spinal surgery 04/06
                                Interstim implanted12/04
                                interstim removal 12/05
                                Hysterectomy 1998
                                Bladder surgeries due to hysterectomy,'98,99,00,01
                                DXx with IC w/ Hunners 1999
                                Chronic Pelvic pain
                                Chronic fatigue
                                Fibromyalgia
                                Depression/post traumatic stress syndrome
                                IBS
                                Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

                                Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
                                Weekly or as needed instills w/ elmiron/lidocaine/bicarb

                                Meds:various pain meds,Soma (muscle relaxant)
                                Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
                                and a few others I'm sure,depending on how good I have been on my IC diet.

                                Trying to keep a positive attitude, in a negative world.

                                Best treatment of all, Good Friends who Understand

                                Comment

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