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  • Racergirl: I feel so for you and have said to myself so many times "what the hell do the majority of people do, who don't have long term disability and/ or a husband to help. I haven't wanted to get into politics because this just is not the spot for it, but current administration at federal levels does not favor disabilities or assistance for families. (I say this b/c I am also watching my sister, who is 43 and had brain cancer at 10years and is suffering Traumatic Brain Injury..her job has been cut, housing benis cut, food assistance cut, she only survives b/c she is still on my dad's Navy pension for health insurance..they used to do that for families with disabled kids.) My lawer was sure I would have gone through year ago....now? We are looking at Sept. He told me to get a journal and daily write " your activities, pain level, #times peeing, # times you have to get up at night. "
    I have been through the first two levels but figured I would be seein' the judge.

    See if you can get a lawyer to help you, one that specializes in this. they don't charge unless you win, then they tKE 2O-25% Of past winnings. You keep the rest. Plus earnings later.

    In the mean time, take whatever help you can....for your kids.

    I'm so sleepy. only 6 pm but I gotta go go tb bed.brr

    gnite
    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


    • thank yall for ur advice. i just hate asking for anything. i am just too stubborned or independent i guess, but i got some help thank god. yes, a mother has to do what she has got to do. i just always paid it in, never had to use it but glad it is there. i know my kids come before my wants and needs. i will just have to keep dragging myself on til the calvary comes, lol. i just wish we had some more understanding people who make the laws that have enough sense to realize to take care of all the people that make this great country what it is, what it has been and will ever be. but that is just my opinion.

      Comment


      • Great post, my husband has ic and thank god we finally found a doctor who doesn't think its all in his head. I also have seen when he is crawling on the floor crying in pain. About 4 years ago he had already given up, he had written a sucide note to me. The pain was unbearable, we didn't know what was wrong the uro at the time was a idiot.

        Then we found a pain specialist, well it was ok for awhile, he didn't like my husband, I don't think he believed him either; so he let us go. I was so stressed trying to find a dr for him. I didn't give up I was willing to take him anywhere in the state to find someone for him. Thank god we found one in our home town. He is doing fine, has gained weight, plays his guiter at home and writes music. If it wasn't for his meds I'd hate to think what would happen to him
        Now I'm trying to get his Elmiron, because he has met the donut hole on his insurance

        anyway always feels good vent I'll have to get my husband in here, he's just not computer friendly, I tell him he's not the only one out there

        I admire all of you out there. May god bless

        Comment


        • I'm getting some relief from Urelle

          If you haven't tried Urelle, it's certainly worth a try. I have tried just about every medication out there. It was to the point that when my Urologist looked at my medication list, he would say, "Well, Sheryle, you're taking just about everything we offer for IC, I don't know what to tell you."

          Well, by the grace of God, I made an appointment with my PCP and told him that I needed to find another Uro who had more working knowledge about this disease. Because we are on HMO it was a difficult search, but it paid off. The Uro I am going to now prescribed Urelle and it has helped alot. The spasms have diminished some and I am simply amazed that I don't have to go to the restroom every fifteen minutes anymore.

          If you haven't tried it, it's time to do so. Call your physician!
          Prayerful blessings, Sheryle


          Good, Better, Best - Never let it rest...
          Until your Good is Better and your Better is Best!

          Comment


          • Where is your pain?

            I've emailed a few of you to find out exactly where your pain is. Thank you in advance for your replies. I decided to just post a public message instead of all those private messages.

            Q: WHERE IS YOUR PAIN LOCATED?

            Please help me out on this. My pain is located in my lower right pelvic area mostly. Sometimes I feel a twinge on my left side. And it is every day. The pain is worse if I sit for long times or stand/walk for long times. If I do something strenuous, it is really bad. Forget exercise and playing sports. I've had bladder infections before and they seem to be in the lower pelvic area in the middle near the girly parts. But this is on my right side near my hip bone.

            I am interested to see if anyone else has the same type of pain that I'm having and in the same area of the body. Also, I've been diagnosed with Endometriosis and Ovarian Cysts. My gyn doctor is convinced that these pains are from IC. I'm going crazy!

            PLEASE HELP.

            THANK YOU IN ADVANCE.

            Comment


            • Pain - How much?

              I'm so very grateful to say I don't have debilitating pain every day. At one time (3 years ago) I did have constant pain for almost a year. There were nights I would get up and run the tub full of hot water just for a little relief. I would do that several times per night. Thank God I'm so much better. You can be better. Just keep trying meds until you get the right combination. I did have cortisone injections in the supra pubic area (under ultrasound) and I have had several rescue instillations of late, but by and far, I'm a whole lot better.

              Attitude has so much to do with this disease. I don't mean to sound preachy but we have to understand that the Lord said He wouldn't put more on us than we can bear. We can use the suffering as a platform to understand those who are worse off than we and to have compassion. I am taking 1800 mg of neurontin per day, urelle 4 times per day, hydroxyzine 50 mg at night, atenelol 50 mg 3 times per day for blood pressure and tachycardia and cytomel for hypothyroidism. I can't say for sure why it's started giving me so much relief, but don't despair. There is hope and there is relief. Perhaps I'm going into remission....

              Prayerful blessings!
              Prayerful blessings, Sheryle


              Good, Better, Best - Never let it rest...
              Until your Good is Better and your Better is Best!

              Comment


              • Ellora, I have pain very similar to yours. My pain is mostly in my right side pelvis and sometimes I will get severe pain in my right hip. It feels like it is a deep pain in the bone. It will hurt so bad I will be in tears. Sometimes the pain in my hip will also feel like something is pulling and tearing. I also get a feeling like chards of glass are being rubbed inside in the right hip.

                Do you have IC with Hunners ulcers? I do and sometimes I think it is my Hunners ulcers and the pain is being refered to my hip area.

                I also have Endometriosis and have had ovarian cysts.

                I don't have a problem with sitting for long periods, but any physical things like walking for a long period of time, cleaning the house like a "mad woman" will make me start hurting if I'm not already. Bending over just kills me it causes me instant pain and also lifting anything heavy.

                Take care,

                Judy
                -IC diet
                -Elmiron: 200 mg/per day
                - Lyrica: 200 mg/per day
                -Amitriptyline: (Elavil) 50mg/per day
                - Vesicare 5mg per day
                -Atarax: 25mg/per day
                -Heparin/Lidocaine/Sodium Bicarb instills 5 per week or as needed
                -Prelief as needed

                Comment


                • My pain location

                  Wow...haven't written to this thread in a long time

                  Besides the usual suspect (pubic bone tenderness, torture as my bladder fills) I have an odd pain on my left side inside the hip (ilium?)...I think it is scar tissue where my doc nicked my bowel during one of my numerous pelvic surguries and I am prolific scar tissue producer. I have no female organs left to speak of except what's on the outside...I have a long strand of scar tissue from my navel to my, well, clitoral muscles so having an O is not much fun...kinda feels like I've been kicked in the stomach right at the peak of what should be fun...my husband has been rudely tossed off more than once. New pain that sounds something like is being described. My SI joint (Sacro Iliac) on my left side is so tender I can't hit the clutch in my truck . Sucks. I went in for an injection last week. Really helped....but I over did it yesterday, however I am springing back quickly. But, Now it show my right side also hurts I just didn't notice it. I'll let it go for now. ( The injection, even sedated, wasn't fun)

                  I see a chiro regularly. He works all the kinks in my body out, usually before I see him I visit his massage therapist so it's kinda of my twice a month treat to myself for all the pain. My insurance covers most of it (10 dollar copay for 150 visit) so I feel better after and I am getting stronger in my "core". (I have gotten very weak in my tummy muscles..If I can strenghthen that, I will be in good shape.)

                  Hope that helps
                  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


                  • Sheryle,

                    First, I am so glad you are getting some relief from your current meds! Sometimes it takes just the right soup to manage pain and mixing the meds makes for the best outcome and overall taking the least amount of meds.

                    The first paragraph of your post is the way I lived for about 3 years. You described it so well! It reminds that although, I can't work anymore and the meds make me extremely tired and turn my brain to mush, taking them is better than being between the bed and the bathroom. Thank you for your wonderful writing!

                    Again, I am so happy for you!

                    ads


                    Originally posted by Sheryle
                    I'm so very grateful to say I don't have debilitating pain every day. At one time (3 years ago) I did have constant pain for almost a year. There were nights I would get up and run the tub full of hot water just for a little relief. I would do that several times per night. Thank God I'm so much better. You can be better. Just keep trying meds until you get the right combination. I did have cortisone injections in the supra pubic area (under ultrasound) and I have had several rescue instillations of late, but by and far, I'm a whole lot better....Prayerful blessings!

                    Comment


                    • ellora,
                      I wonder if a PT that specializes in pelvic pain could help determine what is causing you pain, sometimes they can assist doctors with diagnosis. There is a list on this board and I would ask those who live near your area. I am sorry my pain is different, so can't help you.
                      ads

                      Originally posted by ellora
                      I've emailed a few of you to find out exactly where your pain is. Thank you in advance for your replies. I decided to just post a public message instead of all those private messages.

                      Q: WHERE IS YOUR PAIN LOCATED?

                      Please help me out on this. My pain is located in my lower right pelvic area mostly. Sometimes I feel a twinge on my left side. And it is every day. The pain is worse if I sit for long times or stand/walk for long times. If I do something strenuous, it is really bad. Forget exercise and playing sports. I've had bladder infections before and they seem to be in the lower pelvic area in the middle near the girly parts. But this is on my right side near my hip bone.

                      I am interested to see if anyone else has the same type of pain that I'm having and in the same area of the body. Also, I've been diagnosed with Endometriosis and Ovarian Cysts. My gyn doctor is convinced that these pains are from IC. I'm going crazy!

                      PLEASE HELP.

                      THANK YOU IN ADVANCE.

                      Comment


                      • Wendyk,
                        I felt like it would be giving in to file for disability too, but is isn't and you can always turn it down if you get well. It does take a long long time just to complete the paper work and get your records together, then you have to wait for the gov't to process and decide. If you change your mind, then you can always walk away, but if you don't apply you may be left in a bad position. I waited until the very last minute and was in denial, so I was lucky to have things work out and be approved quickly, which is rare. (30% or so on the first time with SSDI)

                        I wish you the best and can understand your position.

                        ads


                        Originally posted by WENDYK
                        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

                        Comment


                        • Wow...and just in reply to Wendy's quote as well....Disability TAKES FOREVER. I finally have my hearing next month after 3 1/2 years. You've worked hard, I assume, that's what it is there for, and I completely understand the IC winning part. I've had so many tearful arguements with my husband RE: this...and we all know (including docs)I ain't teachin' anytime soon. It really is a pain, but you have to move through the steps of denial, anger, bargaining, depression, and acceptance...much like a person with a terminal disease...only, we aren't terminal so we move up and down the ladder. (Anger seems to be my favorite, followed by severe guilt and depression..)

                          As for pain in the rump (some stated) I would imagine endometriosis or adhesions. If it was me, likely adhesions, but I've had many surgeries. If you haven't, I'd worry about endo. not fun at t'all.
                          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


                          • I fought the IC/FMS for several years and finally gave in and allowed my family to file for Disability. I won after a year and a half.. be prepared to be humiliated by the SS hearing. I had very little self esteem before and none after the hearing. My pain is constant and I am unable to walk without a cane anymore. I can not sleep (even drugged) more than three hours at a time. I have interstims, do bladder instillations, and see a pain specialist. My life is very limited and I am incredibly depressed. My pain specialist suggested that I seek the help of a Mayo Clinic or someone who sees thousands of ICers a year.. Does anyone have any info on whom helps the most? I just want some life back. I want to play with my babies and make love to my husband. I want to be able to walk down my hallway...

                            Comment


                            • Re: IC hearings SS hearings

                              Wow, I had heard they were pretty kind. I have a lawyer though, mayber that makes a difference. My lawyer says the hearing officer in my case is nice, he just wants to see people who say they can't work when it comes to a disease that 90% of the patients can work. And they will also look at the fact that my job was very physical, but required a Master's degree and high pay...They take all that into account as does my private insurance. My case file is almost a foot thick, just from my primary there are over 250 pages + a cover letter that states, emphatically that I should not be working because of X, Y, Z...and he refers the reader to specific points. My pain doc tried to put an interstim in a couple years ago and the report said I had so much pain in my pelvis the machine couldn't cover the area, it just created more pain. Finally, I am also taking my friend/former boss/mentor/now supervises my volunteering to the hearing. She's known me since I was 14. I am now 41. So she is pretty well qualified to speak to the change in my life.

                              My big concern, should I get this, is the impact on my children's monies. (is that even a word ) I currently have private Long term dis. insur. and they have stated all along any money that comes dues to my illness is taken from my LTD private money. So, social security has said I'm eligible for about 1300-1400, I think and my kids around 250 each. Their money goes into an account in their own name. (As people who have had SS know) ..So, all my back pay goes to the standard and my lawyers. It goes into my account...AND..goes out. Sorta sucks but I understand. This company, though, never gave me extra money for my kids. I got the same amount of money as a no child employee or a 5 child employee. So, I'm supposed to sign some form saying the money goes to the children, and I have to account for it. When it goes into their accounts, I have to pay 25% to lawyers and, according to private account rules, the rest to them...which violates social security law. Then they reduce my monthly allotment by my SS amount and my Children's and pay me the difference...(about 700 dollars) So, all the money is in 3 separate accounts..and I can't take money from my kids unless it is for their needs..basically a 500 dollar pay cut for the family income, although I understand some money can come out for school clothes, fees, food, supplies...but it seems harsh. It's not like I don't want my kids to have money..I just think I feel penalized and confused re: how to reconcile trustee pledge and sending their back pay to my company.

                              What to do, what to do. Talk about being caught between a rock and ahard place.
                              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


                              • Social Security

                                I had an attorney also. I also had the full support of my Urologist, Pain Specialist, and Pain Psychologist. It was still a painful process because it felt like I was giving up. I love to work--I owned a Pre-School. Since I was a small business owner I didn't have diability insurance and the other bells and whistles. For some unknown reason--I at last qualified for SS benefits (a whopping $300 per month) and my two children do not. After attorney fees, medical fees, and living on prayers I am now $16,000 in debt. We took a $2,000 monthly cut in income and it's been hard to adjust. Fortunetly, my husband is very supportive and we continue to seek answers that may give me some life back. The world of Social Security is confusing and stifling. There are so many people applying that are just to lazy to work that it has really muddied the water for those of us that truly need the help. I wish that there was legislation to protect us. It would be grand if--once you passed the hearing process-- you were guaranteed a life that was financially beneficial to your children. I don't mind doing without material things--I just get tired of reminding my kids that we don't have the money for lessons and things right now.

                                Good luck with your attorney. I will pray that they really do come through with what they've stated you'll receive. It's hard when it doesn't happen the way you thought it would.

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