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  • Help! Health Care Crisis

    I'm sure many of you can relate! I have medical bills piling up because my insurance company won't pay for my IC because it's considered "preexisiting". I can't work because I'm in too much pain, go to the bathroom every 15 minutes, and I don't sleep at night. I am not getting the care and medicine I need to survive, because I can't afford it! I saw online the Michael Moore is making a film about the Health Care Crisis. I realize that there are thousands of IC patients who are in tons of debt because of health care costs and can't find coverage. We need to work together to write congressmen, the press, and tell our friends to take action. Thank you for your time. I know we can do this and help each other out!
    Emily

    Pain purifies us

    *Diagnosed with IC in 2006 with cystoscopy. My bladder bled everywhere. The nurse fainted.

    Misdiagnosed with IBS
    Started with bad malabsorbtion problems (leaky gut syndrome)
    Found out I had food allergies from an elimination diet (allergic to Milk, Soy, High intolerance to Gluten, and Nuts. My gut feels sooooo much better now that I'm off these). Turned into a leaky bladder lining= IC.

    [Medications; Elmiron, Lyrica, Sudafed, Aloe Vera, Yaz (Birth Control; for lighter periods to avoid bad flares) I'm doing great yeah!
    IntrestitialCystitisRelief.blogspot.com [email protected]

  • #2
    First of all to the board. You are right about the crazy situation with our healthcare in the US. I don't have the answer to it, but you are right about writing our local congressmen, etc. One thing I can tell you is that there are lots of local programs out there to help people get the meds they need, as well as SSDI, medicare, medicaid, and help from local churches, and organizations. I've had to use many of the local programs here in the past, and they have pulled me out of many financial ruts that I was in when I was single and raising 3 kids. Go to the local pages in your phone book, check out the blue pages under the local area and start calling anyone and anything that looks like it may be able to help you out. Even if it's for a week's worth of food, thats about 100.00 or more right there that you wouldn't have to spend. There are programs out there for power bills, and also medicine assistance programs. There is always hope, and there is always a way out. Sometimes you just have to search for it.

    I hope things work out for you soon, and we're glad to have you on the board.

    Sandy
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

    Comment


    • #3
      You can also go to the source for medication--if prescribed by your Dr. I know Elmiron has a program. I'm sure other companies do too. That's a start.
      Your right our medical is horrible. I have insurance and I'm killing our family budget. When we're short it goes on credit cards. It's horrible horrible.

      Comment


      • #4
        Originally posted by emilyjean View Post
        I'm sure many of you can relate! I have medical bills piling up because my insurance company won't pay for my IC because it's considered "preexisiting". I can't work because I'm in too much pain, go to the bathroom every 15 minutes, and I don't sleep at night. I am not getting the care and medicine I need to survive, because I can't afford it! I saw online the Michael Moore is making a film about the Health Care Crisis. I realize that there are thousands of IC patients who are in tons of debt because of health care costs and can't find coverage. We need to work together to write congressmen, the press, and tell our friends to take action. Thank you for your time. I know we can do this and help each other out!
        Same case here.Insurance denied due to preexisting condition.I have put off all medicines and just trying cheap supplements.I think we should first compile list of all the programs and organization which will help with treatment.
        That sounds more feasible.

        Comment


        • #5
          Talk to your doctor's office about medication programs. Many of the drug companies offer assistance to people in need. And your doctor's office may have medication samples to help you. It's worth asking.

          If you can manage to get yourself into a group insurance plan, they almost always will cover pre-existing conditions --- there's sometimes a waiting period, but that's better than nothing.

          Sending encouraging hugs,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

          Comment


          • #6
            Thank you for the advice...

            Thank you for your help. I have found the pparx website with prescription assistance, and last time I was at the Dr. they gave me a ton of samples. Thank goodness! I still have to go to the Dr. twice a month for stemming and it's costing me $500 a month. Anyone have any advice on financial help for Dr. visits? I appreciate everyone being so helpful. Emily
            Emily

            Pain purifies us

            *Diagnosed with IC in 2006 with cystoscopy. My bladder bled everywhere. The nurse fainted.

            Misdiagnosed with IBS
            Started with bad malabsorbtion problems (leaky gut syndrome)
            Found out I had food allergies from an elimination diet (allergic to Milk, Soy, High intolerance to Gluten, and Nuts. My gut feels sooooo much better now that I'm off these). Turned into a leaky bladder lining= IC.

            [Medications; Elmiron, Lyrica, Sudafed, Aloe Vera, Yaz (Birth Control; for lighter periods to avoid bad flares) I'm doing great yeah!
            IntrestitialCystitisRelief.blogspot.com [email protected]

            Comment


            • #7
              Good idea

              Originally posted by Donvar View Post
              Same case here.Insurance denied due to preexisting condition.I have put off all medicines and just trying cheap supplements.I think we should first compile list of all the programs and organization which will help with treatment.
              That sounds more feasible.
              I think you have a great idea. If anyone knows of programs that are out there to help please post a list on this link. Thank you!
              Emily

              Pain purifies us

              *Diagnosed with IC in 2006 with cystoscopy. My bladder bled everywhere. The nurse fainted.

              Misdiagnosed with IBS
              Started with bad malabsorbtion problems (leaky gut syndrome)
              Found out I had food allergies from an elimination diet (allergic to Milk, Soy, High intolerance to Gluten, and Nuts. My gut feels sooooo much better now that I'm off these). Turned into a leaky bladder lining= IC.

              [Medications; Elmiron, Lyrica, Sudafed, Aloe Vera, Yaz (Birth Control; for lighter periods to avoid bad flares) I'm doing great yeah!
              IntrestitialCystitisRelief.blogspot.com [email protected]

              Comment


              • #8
                im with you girlfriend!

                Originally posted by emilyjean View Post
                I'm sure many of you can relate! I have medical bills piling up because my insurance company won't pay for my IC because it's considered "preexisiting". I can't work because I'm in too much pain, go to the bathroom every 15 minutes, and I don't sleep at night. I am not getting the care and medicine I need to survive, because I can't afford it! I saw online the Michael Moore is making a film about the Health Care Crisis. I realize that there are thousands of IC patients who are in tons of debt because of health care costs and can't find coverage. We need to work together to write congressmen, the press, and tell our friends to take action. Thank you for your time. I know we can do this and help each other out!
                i know exactly what you are going through, i myself am working right now and try to keep myself on a peeing schedual because i find i can only release when in my own bathroom. it sux we have to look torward disability and all that just to survive with thins, its just basically saying we are cursed from this disease and we'll never have anything else but federally funded medicin and a crappy ssi check! i dont know, but keep racking your brain on getting out of this financial hell because the stress only makes your bladder worse! think up that million dollar idea! we can get through this so they tell me. good luck to you, keep going one day at a time and if you need to cry, do it who cares what anyone thinks ( my currant supervison- a not very attractive woman who is only about a year older than me told me i need to go home if im gonna cry up here, thats after 4 attempts to empty my badder with a liter of water in it and the worst retention on this earth, and dealing with her non-understanding attitude, im not supposed to cry! the nerve of these people) we need to open an IC buisness and help eachother out with med. benefits and time off!

                Comment


                • #9
                  I feel your pain worryrock

                  I can't believe your surperivsor said that! I feel so sad for you. I've had similar experiences and I get so frustrated! People can be really thoughtless.

                  As for your idea on all us IC people getting together to help each other and get out of debt, I love it! There's so many of us. I know we can join together and do something. If anyone has any ideas please post them on this thread!

                  I've already written to a lot of government officials telling them the crisis we're in as IC patients. We need better health care.

                  I also thought it would be great to have a bathroom decorating business and shop for IC patients. Since we all spend a lot of time peeing we might as well make our bathrooms relaxing and enjoyable to be in. Why not start a store to help each other out?

                  We all need to do something!
                  Emily

                  Pain purifies us

                  *Diagnosed with IC in 2006 with cystoscopy. My bladder bled everywhere. The nurse fainted.

                  Misdiagnosed with IBS
                  Started with bad malabsorbtion problems (leaky gut syndrome)
                  Found out I had food allergies from an elimination diet (allergic to Milk, Soy, High intolerance to Gluten, and Nuts. My gut feels sooooo much better now that I'm off these). Turned into a leaky bladder lining= IC.

                  [Medications; Elmiron, Lyrica, Sudafed, Aloe Vera, Yaz (Birth Control; for lighter periods to avoid bad flares) I'm doing great yeah!
                  IntrestitialCystitisRelief.blogspot.com [email protected]

                  Comment


                  • #10
                    Fyi

                    I am sorry that you are going through all of this and sorry that I don't have any answers. I just thought I would pass some info on to everyone.

                    I saw Michael Moore on the View. They asked him who would be the person to fix this problem with the health care crisis in the next election. He said the person to fix it has not said he would run yet. Al Gore.

                    Ginny

                    Comment


                    • #11
                      Thank you Ginny for the update

                      I wish I had seen the view. I'm glad you posted on our website. I'm not going to comment on how I feel about SIcko (his movie coming out on health care) because I've never scene it. I'm just glad he's doing something that will get people's attention. Thank goodness! I'm glad a lot of the potential presidential candidates are aware of the crisis our health care system is in! We just need to all be doing more to inact some kind of positive change. For example, doing away with pre existing conditions would make a huge difference, and getting the thousands of uninsured children in the U.S. insured would be wonderful.

                      I've started writing Gov't officials (congressmen, etc.) to get their attention.
                      Please, does anyone have any other money saving health ideas? or ways we can help change happen?

                      Please post them here.
                      Emily

                      Pain purifies us

                      *Diagnosed with IC in 2006 with cystoscopy. My bladder bled everywhere. The nurse fainted.

                      Misdiagnosed with IBS
                      Started with bad malabsorbtion problems (leaky gut syndrome)
                      Found out I had food allergies from an elimination diet (allergic to Milk, Soy, High intolerance to Gluten, and Nuts. My gut feels sooooo much better now that I'm off these). Turned into a leaky bladder lining= IC.

                      [Medications; Elmiron, Lyrica, Sudafed, Aloe Vera, Yaz (Birth Control; for lighter periods to avoid bad flares) I'm doing great yeah!
                      IntrestitialCystitisRelief.blogspot.com [email protected]

                      Comment


                      • #12
                        I just finished seeing the movie, My jaw is still open dump struck ! After watching this seeing what US patient's have to deal with is pure hell ! I was able to get a preview of the film and would recomend it to all US & Canadian & European 's to watch ! If I was in the States I would try to elect Michael Moore as president ! After seeing it I called Kara & said think about all the people who post on the IC boards are all Canadian & Usa , watch the movie & you will be able to see for yourself!
                        hugs to all
                        luv Sandra
                        Last edited by sandramac; 06-24-2007, 04:33 AM.
                        "Never Give Up."

                        To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                        My Photobucket Link:
                        http://s237.photobucket.com/albums/f...ramack_photos/

                        Comment


                        • #13
                          Well, my husband and son have asthma, so that is already a preexisting issue. I didn't think IC was a preexisting issue, but I can see the point. My husband works for the market and as people may know, the contract. The union and employer are juggling over health care costs. In the last strike, my co pay went up 400%. That is from $5 to $25. Plus all generic and brand co pays went up as well. But at least it is still reasonable unless I am going weekly like I was before. The cost adds up. I cannot go get medi-cal because we own our house.
                          bunnykinb

                          6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                          tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

                          Comment


                          • #14
                            What is medi-cal?

                            Originally posted by bunnykinb View Post
                            Well, my husband and son have asthma, so that is am going weekly like I was before. The cost adds up. I cannot go get medi-cal because we own our house.
                            Hey,
                            I'm so sorry your co-pay went up so high! I was wondering what medi-cal is? I'm just wondering if it's a program I'm not aware of that could help us out?

                            Thanks,
                            Emily

                            Pain purifies us

                            *Diagnosed with IC in 2006 with cystoscopy. My bladder bled everywhere. The nurse fainted.

                            Misdiagnosed with IBS
                            Started with bad malabsorbtion problems (leaky gut syndrome)
                            Found out I had food allergies from an elimination diet (allergic to Milk, Soy, High intolerance to Gluten, and Nuts. My gut feels sooooo much better now that I'm off these). Turned into a leaky bladder lining= IC.

                            [Medications; Elmiron, Lyrica, Sudafed, Aloe Vera, Yaz (Birth Control; for lighter periods to avoid bad flares) I'm doing great yeah!
                            IntrestitialCystitisRelief.blogspot.com [email protected]

                            Comment


                            • #15
                              I'm originally from Canada and my older sister still lives there. On one of her visits, she and I were watching TV and a public service announcement for the local Free Clinic (which depends on grant money, donations and volunteers to stay open) was on. My sister is very intelligent and well educated, but she had never heard of a Free Clinic! Such a thing doesn't exist in Canada - there's no need!

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