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  • Help and I've Missed You All!!

    Hello New Friends and Old Pals! I sure need you all and miss your support! I really could use some friends right now. I'm hurting..............

    This has been the worst year of my life. It keeps getting worse and so does my bladder/pelvic pain. I'm in the worst IC FLARE EVER. We just bought a house and now my Husband might lose his job. We can barely pay the mortage as is. My pain is out of control. I can NOT LOSE MY CHRONIC PELVIC PAIN DOC OR MY MEDS. I'm on disability and can apply for part D for meds but I think that costs more out of my disabiity check each month which we can not afford!!! We are running out of options here to manage this. Maybe I should have posted this in pain managemet but I've been flaring like this since we decided to move 9 months ago. Now the house is ours and I don't like what has come with it. I don't know where to turn to or who to talk to. I have no friends and no family left to talk to about this stuff. My Go to people have heard enough. What do I do?

    I was friends with some of you a long time ago when I was a moderator here way back when............I thought some of you might be interested to see our 10 year wedding Anniversary/Vow Renewal Photos. Let me know if you have trouble viewing them and what you think. You can leave your comments right there on the page.


    Here is the link to the photos taken June 29th, 2011 of or 10 Year Wedding Vow Renewal

    Share this album with anyone by sending them this public link:
    http://www.facebook.com/media/set/?s...10bb7af&type=1


    Thank You for looking at them!!! It was the 2nd best day of my life!!!!

    If any of you want to talk or remember me. Hello! and I miss You ALL!! I still pray for a cure for all of us every day and night and did not forget any of you but I did forget phone numbers and ours has changed. PM me if you want to chat!


    Love and Hugs,

    and old Friend, Kara Reese
    Last edited by Kara29; 10-04-2011, 10:46 AM. Reason: grammatical
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  • #2
    Hi Kara

    I'm old enough to be your grandmother, but have just been diagnosed with IC. But then, I guess when you share a common challenge, age doesn't matter. This is my first reply on this forum. I haven't figured out how to post a new thread!

    Anyway, I'm sorry to read that you are in so much pain. If I reach a point where I am in the pain you are describing, I take oral morphine, 15mg, slow-release over 12 hours.

    I am highly allergic to demerol, percocet, codine and percodan. But, the slow-release morphine works well for me. I've read that this old-fashioned drug is less addictive than the pain-killers I've mentioned.

    The morphine I take does not make me "high" - just kills the pain to the point that it's more of a "dull" pain. If necessary I add Advil, which ends the pain completely.

    Maybe your doctor or one of them (I have many at this time) might be willing to let you at least try oral morphine, during major flares.

    It's a drug that most doctors rarely prescribe. But, in my opinion, it's one that is over-looked, but may be an answer to those who need relief.

    If this posts, I'll write again.

    In the meantime, know that we just have to keep trying to figure out what works for each of us, as individuals.

    You never know what tomorrow will bring - it may be the best day of your life!

    Hugs,
    Emily

    Comment


    • #3
      Reply:

      So sorry to hear you're in a flare. Just know that we all understand here, and are in a way a very special group that knows what each other is going through in a way that our friends and family simply can't empathize with (since they don't have IC).

      It is sometimes hard to talk to other people about our problems who don't have IC. It is hard for them to understand what it is like being in so much pain, not knowing whether tomorrow will be worse or better, wondering when you'll be able to enjoy life again and finally get out of this flare.

      Just remember that one day, it will go away. Flares can't last forever, it is a matter of getting it under control with medication, therapy, remedies, whatever it takes! I used to be so ashamed at the days that I would have to lay in bed or in a bath for hours, totally "out of it" from pain meds. But now I see that I did what I had to do to make my body feel better, and that there's nothing to be ashamed of.

      I can't offer much advice about the house situation, but I do have a question about disability - how long did it take for you to get approved? I applied earlier in the year, was denied, and am in my second appeal. It hurts that they keep denying me even when my doctor specifically tells them I cannot work with 5 chronic diseases.

      Good luck and I will keep you in my thoughts!



      Molly
      Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

      Medical research addict.

      Likes: hot baths and naps with cats

      Comment


      • #4
        I'm so very sorry you are having such a problem. It might be a good idea to talk with your mortgage company ahead of time in an attempt to work things out --- many banks are very hesitant about foreclosures and are willing to work with people towards solutions.


        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


        • #5
          Hi Kara,
          Just sending a hug and hoping things get better soon!
          Kadi
          Kadi

          -------------------------------------------------------------
          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.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "


          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

          Comment


          • #6
            kara29 I hope that you will ALWAYS come here when you feel you have no one else to turn to!!! Some of us tend to come in here and read and not post, or even not check in for quite a while until we have a flare and then come running back. (guilty!!!) It's so nice to always be welcomed with opened arms and such compassion as we're met with here at ICN.
            Glad to see you back and I will pray that your situation will improve. God always seems to have a way to come through for us when we need help the most! Hugs!!!
            (formerly DonnaRenee1)


            Diagnoses: IC, fibromyalgia, inflammatory arthritis, connective tissue disease, reynaud's, APS, (the lupus anticoagulant, also known as "sticky blood syndrome")
            Meds: low molecular weight heparins, synthroid, methadone for pain, tizanidine, cymbalta, pyridium plus, urelle, phenergan for nausea, ambien, lisinopril, norvasc, plaqenuil for arthritis, and over the counter Prelief
            Treatments: DMSO, occasional hydrodistentions, hot baths, strategically placed heating pads and ice packs, TENS unit, and everything from pity parties to prayer.
            I have lots of support from my family. My husband and my parents are amazing! I have a wonderful daughter who also has IC, and she has given me 2 precious granddaughters. They are my heart and soul! Thank you God for my family!

            Comment


            • #7
              Hi Kara,

              I am so glad to see you back on here. You have had a horrible year with your health but some real positives in other parts of your life.

              Donna is right about the house. Talk to the mortgage company ahead of time to see if they can help. I can totally relate to what you are going through. It is brutal out in the world right now. We have lost one house and are barely hanging on to another. The only thing saving us is the fact that we are buying it on contract and the elderly couple are working with us. We are close to having it paid off and if this economy would just turn around a little, I would get it done. I will say some prayers for you about your husbands job.

              I am sure the stress is contributing to your flare. I loved looking at all your pictures. What a beautiful day for you all. Take care and you can find me both here and facebook. Hugs!
              Jolene

              "Life is what happens when you are making other plans" John Lennon

              IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

              Information for Patients can be found here.
              http://www.ic-network.com/patientlinks.html


              Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




              Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

              "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

              Comment


              • #8
                Hi Kara
                Just today saw this post! For me its been over a year now of the constant burning perineal pain made much worse sitting at work.
                I see your diagnosis has been all over the map with the things your trying, ive had tthree lumbar epidurals,MRI,nerve cond testing.....i tried the spinal stimulator trial. Most recently facet blocks and ablations on the right side...all very minimal if any help at all....
                Im tired of being on vics or oxys all day as the hangovers are brutal....How are you now? and what was the resulting outcomes of your PNE blocks or treatments as im going to explore that next,
                My pain is the buttocks to mid thigh burning and under my testicles (im a 52 yr male, obviously) it seems mostly concentrated in the perenium and radiates outword from there, standing is almost total relief, sitting is sometimes ok sometimes unbearable....please take a moment and give me your thoughts as i see youve done extensive research on the subject....
                thanks in advance
                Cory
                please email me! [email protected]

                Comment


                • #9
                  Hi, Kara ~ I'm sure so many will always remember you and so glad you turned here for support. I, too, am very sorry to hear about all you're going through. It's true that many mortgage companies have programs to help out with this terrible economy so please give it a try. It took my daughter almost a year to the day of relentless contact with the mortgage co, meeting their strict demands (like making modified payments through the phone within a 5 day period each month, but they did finally get a new fantastic mortgage and we all felt like celebrating (she said it is a wonderful gift). Her husband has been unemployed here in CA for almost 3 years (construction) and she experienced a 50% pay decrease.

                  By the way, your 10 year vow renewal photos are absolutely stunning. What a special event. You are just gorgeous and what a hunk of a hubby!!! Thank you for sharing.

                  Hopefully you can get some emotional relief with some financial help and lower stress will help your symptoms.
                  Prayerfully,
                  Ginger
                  Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

                  11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
                  8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
                  8/2010 Surg gallbladder
                  TREATMENTS (updated 4/15)
                  IC Diet since 8/2009 (Able to vary 4/15)
                  Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
                  Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
                  Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
                  *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
                  Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
                  PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

                  Comment

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