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Having a BAD Week

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  • #1

    Having a BAD Week

    Yesterday I had a flare that seemed to grab me literally from the insides out. The PNE was flaring to the point of hysterical mind blowing pain. I thought I wasn't going to make it. That flared the Vestibulitis something fierce! The tailbone and neck pain were also flaring. I NEVER take narcotics due to the severity of which I react to them, in some cases it makes the flare 1,000 times worse. I broke down and took some Vicoden. I have not wanted to ever go back onto the Fentanyl Patch but I am getting to the point with so much pain. If it's not one thing, it's one of the others. So I've called my Pelvic Pain Specialist and requested the Fentanyl Patches once again at the very smallest dose. This is just about the only narcotic that I can take. I just hate the withdrawl.I should not have to expect myself to handle this sort of pain without something to take the edge off. No doctor would ever expect it of themselves. I am no less. I don't know if he will do it but it doesn't hurt to ask.

    Last week after I returned from my NH trip, I tried to call around to see if I could find a Urologist to take care of my Indiana Pouch as I still don't have one yet..... For each "I can't help you" answer I got, I was even more determined to find a "Yes!" I called 73 Urologists in and around my area and found not one single one who would take care of an existing pouch. The one I was supposed to see has said that they will only see me in a Very Big Emergency and then they still would not know what to do. I've asked them if they could refer me to someone else and that is when they said that they did not know anyone that knew a thing about continent urinary diversions. Mind you I live in a fairly large city. To top that off, I had to make several phone calls to find a pelvic floor therapist, no such luck there either. The ones that specialize in PNE are out in California. Literally impossible to do when you live in NY and have to go there 2 times a week. My PNE Specialist said that I have to keep charging forward and not to give up. He said the hardest thing about all of my areas of pain is to find someone who is willing to take that extra step and learn to help and in some cases to learn a new form of treatment to help me. The PNE surgery can only be done unless I have a great pelvic floor therapist that can take care of me pre and post operatively. The PNE specialist is referring to me as CHIEF! Keep marching on Chief; I know you can do it! How fitting!!!!!!! When I was in 5th grade my teacher used to call me Mighty Mouse. I am remembering that fondly. I never thought I would use it in this capacity.

    Sometimes it helps to just let it out.

    Kara
    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.
    Tags: None
  • #2
    Kara, I know just what you mean about mind blowing hysterical pain like that. I couldn't take what you are without pain meds. You deserve to be pain free and should take whatever you need to get through the day.
    http://www.TheCraftyEwe.etsy.com

    Comment

    • #3
      I wish I could do more, but all I can do is to care and send well wishes.

      Warm 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

      • #4
        Kara,
        I just wanted to say you are such a strong woman, I cant even imagine the pain you are in..The way you explain it, it sounds awful..I wish there was something I could do to help..I will just keep praying and hoping all this pain will end for you soon...

        PS ..I hope your mom is doing well
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


        ICN 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

        • #5
          Kara, I'm so sorry you are flaring so badly, and have so much pain. I know for you to even consider narcotics, you must be in unbelievable pain. I hope so much the doctor will let you have the patches - you need to be gotten out of that pain NOW, we'll worry about any withdrawal later. Hopefully with a low dose, maybe the withdrawal won't be bad or won't even be hardly noticeable.

          Keeping you in my prayers!

          Blessings,
          Lori

          Comment

          • #6
            Kara, sorry that you are having such a horrible time of it right now. As fro finding a uro in your area that will take care of you and your pouchI can totally relate. I do not have alocal uro, so my internist is the one who takes of me for ALL my things urinary related. If I do have a real big problem that he can not do then I go to my uro in Ma. When my internist realized whgat the situation was as far me not finding a uro he volunteered to be my main doctor for it. You may want to consider this solution if it works for you and your primary doc. I do live in a small town so my choices a very limited when it comes to doctors.

            Comment

            • #7
              wow that does sound pretty awful......but i totally feel your frustration it seems like finding some decent docs in the area that want to deal with our type of pain is literally impossible.

              i'll ask my OBGYN at my next apt if she knows of any physical therapy places that handle pelvic floor therapy......there has to be SOMEONE out there!!!!!!

              oh yeah and if you do find a decent uro can ya just go ahead and book an apt for me too?!?!?!?!?!?!?!?!?!?!?!?!?!?!?????? i think we would both give an arm and a leg to have a decent uro!
              Erika
              wife to Jeremy
              mom to Emma (3-8-05)
              and Natalie (7-23-07)


              Meds i'm currently taking:
              Lortab as needed for pain

              Meds that did not help:
              Detrol LA
              Lexapro (caused urgency)
              Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)


              Comment

              • #8
                Kara I know you will find the answers. Im glad you decided to get the patches to try to make yourself comfortable. I've had you & your mom in my prayers constantly! Thinking of you, sending hugs & Maine Coone chirps too!
                Love you Sandra & family
                "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

                • #9
                  Kara, I am so sorry that you are in pain. I really hope it eases up ag goeas away soon.
                  'The will of God will never take you where the Grace of God will not protect you.'

                  Comment

                  • #10
                    Meds I take:
                    Elmiron, Elavil, Vagifem- for IC
                    Albuterol, Flovent, Atrovent- for Asthma and lung problems
                    Paxil, Clonazepam- for depression and Anxiety
                    Atenolol- for rapid heart rate
                    Nexium- for Gerd
                    Levothyroxin- for Hypothyroidism
                    Lasix, Pottasium- for edema
                    Lipitor- for High Cholesterol
                    I coated aspirin
                    02 at bedtime

                    Comment

                    • #11
                      Kara,

                      I am so sorry to hear you are having a bad week. Geesh - I wish there was something I could do for you.

                      Hugs,
                      April

                      Comment

                      • #12
                        Kara,
                        I don't post much but I read all the time and you are my hero. I can't imagine going thru what you have gone thru and are going thru. I pray that you will get the healing you deserve and so much need. You are so brave.

                        Comment

                        • #13
                          I've been very sick this week. I've been trying to make two quilts, one for my Sister as a wedding gift and one for my Best Friend for her wedding gift. I am not a quilter. My mother in law is but I am helping her. This gets the wedding gifts out of the way and it's something special. I did get the patches but they have made me way to sick I can't move and they are not helping the pain. What I did FINALLY get which is what I wanted was the Fentanyl Lollipops. I can use them like pain pills and won't have to be addicted to the Fentanyl via patches that I would be comitted to.

                          The only pain relief I am getting is from the Nerve Blocks that last only 8 hours. I have two left. I don't have time to mess around with pelvic floor therapy for years. It's clearly the nerve. I've had 5 sucessful diagnostic nerve blocks and they all point to one specific part of the Pudendal Nerve so we know it's the trapped nerve. I am going to see a Pelvic Floor Therapist a few times. If I get worse, I will not continue.

                          After the two weddings and my Mom's operation is over, she is going to call the PNE Specialist and talk to him about doing the decompression surgery in the Fall. There is no amount of pain medication that can free up that nerve that runs on both sides and is trapped on both sides. The Decompression Surgery is a MUST at this point.

                          I wanted to enjoy making those quilts but I couldn't even do something as simple as picking the fabric out and cutting it. I feel like such a loser. All I seem to be capable of is laying in a heaped up ball of pain in bed. I feel like the biggest failure.

                          Thanks for all of the love and support you are all so generous to give to me!!!!

                          You all amaze me at the things you do everyday!

                          Love and Hugs!

                          Kara
                          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.

                          Comment

                          • #14
                            Oh Kara! Please don't. You do amazing things everyday also! We all wish we could do more. The single mom of three kids doesn't feel that she does enough or is amazing (here!), and the scientist who goes to work everyday even through suffering doesn't feel special, and the lovely young woman who is trying so hard to do something as special and tedious as quilting doesn't feel she is doing anything remarkable.

                            But to SOMEONE, SOMEWHERE, we are all heroes. Whether we feel like it or not. Someone else can't do what we are doing and is amazed by us. I'm amazed by you, Jen, Curlyfries, and everyone else on here, and I get letters saying that I give people hope and encouragement, though I may feel useless.

                            That is the beauty of this BB! We all have the support and love and resources we need to get through the day. I know I'd feel hopeless without all of you wonderful women to keep me going!

                            Now I have to go drive three hours each way to do a three hour inspection, LOL! Heaven help me! I hope I make it! Pray for me k?!

                            HUGS AND LOTS OF LOVE AND SUPPORT!!!

                            Moonheart
                            http://www.TheCraftyEwe.etsy.com

                            Comment

                            • #15
                              Kara,
                              I am new to all of this and rarely post, but I have read about you and your courageous struggles for the past few months. Dear, you are an inspiration to so many people that you don't even know. You are in my prayers and I hope that you find the relief you deserve. You ARE a Warrior!!
                              Thanks for always being here for everyone!

                              Comment

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