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I am SHOCKED! Wish me Luck!

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  • #31
    OMG! I didn't see the award! THANK YOU JILL!!!!!!!!

    OMG! I didn't see the award! THANK YOU JILL!!!!!!!!

    I am blushing.

    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 These are old and my ICN Patient story is very old and outdated.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


    • #32
      I'm glad you got this award Kara....You have been through so much and definately deserve it!

      Hugs, 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


      • #33
        I agree 100% with this award too!! You are so very courageous Kara. Most of all because you dont give up! I know how easy it is to want to give up when things are so hard and it feels like you have tried everything. But you find the courage to keep going. I know you will make it through this.
        Oh and when you are well enough to travel, you are more than welcome to come stay with me in Hawaii!
        Love Sarah
        Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

        Comment


        • #34
          Sarah, I am coming!

          Sarah,

          I would love to come to Hawaii!!!! I'm on my way as soon as I get some relief! That will be wonderful!


          If anyone goes onto a show to share IC Stories, I'd be willing to share mine as well. I'd also be interested in sharing my story to anyone outside of the ICN that will listen. I don't want any more IC folks to have to go through the things that I have. I feel that the Doctors need much more education on IC. Especially Primary Care Doctors and OBGYN's. It would stop so many people from having to go all over the place for diagnosis and adequate treatment.

          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


          • #35
            wow kara i was reading about all the awards,and when i saw the courage award the first person i thought of was you,but i did not know they actually did the award!!! you absolutely deserve this.you are the most couragious person i have ever met(well kinda met,lol).good luck with everything.jamie

            Comment


            • #36
              Good luck with your test. I also had the EMG done on my legs and yes it has to rank way up there as far extremely painful in teh way of tests. I will keep you in my thoughts. Judith

              Comment


              • #37
                Emg

                Congrats on your medal Kara!

                I had an emg in 2005 - the shock and the needles on my legs and hips. I stayed in the bathtub for about three days and had to use constant moist heat while out of it.

                It is incredibly tramautic. More so, since you already know what it is like.

                However, you've been through so much, you can do it! Make a plan for what to do when you get home or as soon as you escape from the neurologist's office. I wonder if lidocaine patches or cream would help offset those muscle cramps?

                Best of luck!
                Carol
                8/2007 - My constant bladder pain is now gone due to a surgery where the ilioinguinal and iliohypogastic nerves were cut. I still have IC symptoms but they are improving. It's still early to say, but I believe this solution will work permanently for me.

                Symptoms since 2005 - 24/7 abdominal pain, cold sweats, low back pain, vulv, etc.
                Surgeries: Spinal Fusion L4-L5-S1 10/97, Anterior spinal fusion L5-S1 9/05, Lap for Cysts, Endo 9/06, Hysterectomy kept cervix 12/06
                Meds: Morphine, Neurontin, Valium, Hydroxyzine, Vivelle Estrogen, Thyroid,
                Exercise & PT: All at least 4 times a week
                Whirlpool baths, Moist heat, Treadmill, Stretching, Trigger point, Yoga Positions; Ab & Pelvic Massage

                Comment


                • #38
                  Congrads Kara

                  Yes, I agree with the others, You do deserve the award. You certainly have set the path for many of us here.

                  I have to have an EMG also soon and my brain fluild tested. Which I heard is horrible too, and they can't put you to sleep.

                  I'm scared too! We would'nt be human if we weren't.

                  I'm sending hugs and prayers your way, maybe something can be done and you will be pain free at last,



                  And an angel to watch over you.......
                  MARY


                  Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

                  Comment


                  • #39
                    Kara...Congratulations on the Courage Award. It seems that, like the lion in the Wizard of Oz, you have always been courageous. I was glad to see the graphic saying that you have been recognized for your courage.
                    Sharon

                    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                    Where I can be found most days.



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

                    Link to the IC Diet:
                    http://www.ic-network.com/diet/


                    IC 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


                    • #40
                      :woohoo: Congrats to you for the courage award. You certainly deserve it!!

                      Mel
                      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


                      • #41
                        Thank you all!

                        Thank you all for the congrats!



                        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


                        • #42
                          congratts! kara !
                          love :woohoo: Sandra
                          "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


                          • #43
                            good luck with the testing, you are sooo brave as it sounds like it will be a great hurdle. i hope thye will keep you there afterwards to control the pain or book a hotel to stay overnight if needed to take pain meds and ice or heat to try and calm the area down if needed

                            i guess this hurdle may be needed to get to the nerve treatment and hopefully that will eb the magic bullet. i have read a lot of your posts but not replied all the time, as you are sooo brave to go throught what you have and still be optimistic. i really hope you can get relief.

                            your posts give optimism and hope to others who have more severe IC that there are lots of options out there even though it may seem like everything has been tried. even after surgery, there are options out there
                            even though i have been housebound with IC for half a year now,it is nothing compared to others. I am hoping that the research that dry keay is it doing on the apf and the drug company that has brought that trial will find the cause of IC so we can be closer to a cure if not for us, but kids or others!
                            IC diagnosis: Aug 2005
                            Symptoms: Urgency, urge and irritation and urethral symptoms
                            Flareup for 1 year til July 2007 (had constant urge and pain et al....)

                            Elmiron 100mg 3x daily April 2006 - present
                            Enablex 7.5mg nightly Sep 2007 -present
                            Atarax, Elavil 10mg nightly (Dec 2007)
                            Acupuncture - November 2007 - present

                            (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

                            Comment


                            • #44
                              On my way

                              I'm on my way!

                              I will be keeping all of your thoughts and prayers with me.

                              Thank you all so much.

                              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


                              • #45
                                Take care.
                                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

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