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  • #1

    Sick and tired

    of being sick and tired. I'm trying to get on the board more regularly, but if I become AWOL again it's just because I don't have the energy to be on here. I'm still achey and very sore. This stupid pain just isn't letting up. I went to my pain mgmt doctor and he told me to make sure I get my B&O suppositories filled as I didn't bother last month. I guess I didn't realize what a major difference they were making in my bladder, and overall pain. So, tomorrow I will make the 30 minute drive there and 30 minute drive back to pick up the RX, then drive to the pharmacy to pick them up. I'm dreading that drive.

    I did go to the ENT yesterday and he told me my nose was looking better inside, but he told me if in 3 months the sores weren't gone he was going to have to do surgery and take a biopsy. They drew blood again, and I know he suspects sarcoidosis. Guess we'll see what this round of bloodwork shows.

    Thanks for always being here for me. I really do appreciate the support!

    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.
    Tags: None
  • #2
    Hi Sandy!
    Sorry to hear about all the problems. It seems to never end for us!! I hope the B&O's help you and your nose tests came back ok. It seems every time I see the dr. he add's to my lonnnggg list of ailments. Best Wishes! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

    Comment

    • #3
      Sandy,
      I'm just glad to hear from you. I knew something was up.

      Hugs,
      Barb
      (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

      [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
      :angel: IC Angel Volunteer Coordinator :angel:
      :) Contact me via PM or e-mail if you would like to help
      I have learned all about life in 3 words: It goes on! :D--Robert Frost
      PCOS 7/85
      RSD 7/94 :headbang:
      Endometriosis 9/98 :toilet:
      Antiphospholipid antibody syndrome 9/99
      Kidney stones--too many to count
      Factor V Leiden mutation 10/02
      IC 6/03 :evilsmile
      Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
      "Spirit is an invisible force made visible in all of life"--Maya Angelou
      "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

      Comment

      • #4
        Sandy,
        So Sorry you are feeling so bad it really seems like everytime we get one thing half way under control something else comes along..I really think I have Fibro im going to see my Reg Dr in 2 weeks to get her opinion.. I hope you get some relief really soon..My thoughts and prayers are with you

        Ronda
        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
          Hi Sandy.
          I am sorry you dont feel well. I hope and pray you get to feeling better real soon. Sending Big)))gentle(((hugs your way.
          Jen

          Comment

          • #6
            Sandy,
            I remember your post several weeks ago saying that you were in a horrible fibro flare. I have been thinking about you and hoping you're okay. I hope that you start to feel better soon and get your pain under control. We do miss you here but if you're too sick to get on we all understand, take care of yourself and get the much needed rest that you need!
            Christine



            I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
            1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
            2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
            I have tried every oral medication as well as rescue instills and DMSO.

            I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

            Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
            Also proud mom to the best Bullmastiff on earth, Claus

            Comment

            • #7
              so sorry you are sick, sending you big big hugs
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment

              • #8
                Warm healing thoughts and giant hugs are headed your direction from Oregon!

                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

                • #9
                  sick and tired

                  Hi Sandy, and anyone reading this
                  I just read your post and wanted to get back with you alnd tell you that I appreciate everything you do on this site. You have helped me so much. I am so sorry you have been so sick and I certainly understand how it feels. It's like when it rains it pours. I am like you I feel like just lying down sometimes and saying ok I give, but I refuse after 30 years I am still trying to fight. I told my doctor yesterday that I did not want anything else checked because I did not want any more diaxg. I wasn't serious but you do get tired of always hearing about something else cropping up. I know myself how hard it is just to type a few words when you feel so bad. Just take care and try to rest in the prayers of all of us who love and appreciate your hard work. My doc. gave me the suppos. and they help but he said only every 12 hours and that is not enough and they don't last me very long, I was wondering if they last any of you longer. I don't know if I get the right mg or whatever but I could use more however am thankful for any relief I can get. I was wondering. I noticed that all of the ladies with ic have multiple things wrong and it seems like we all have been dxed. with a lot of the same things. I had to have my thyroid removed because of a big knot and I wondered if this is what all is calling hyperthyroidism. I know this may sound dumb, but what is causing all of these things to be so connected with ic or is ic connected to them. Can anyone give input on this. It looks as though all has things like fibro., Lupus symptoms, celiacs. gerd and on and on ,on, on ,on ,on,on, It will get to you. I hope all is doing good tonight. Anyone who feels like or will can answer any of my questions, I would appreciate it. I am sort of computer dumb so if my post look funny That's probably why. Love all you ladies and I hope I will get to feeling better so I can learn how to make my post and everything look like all of your.

                  Comment

                  • #10
                    Thanks to everyone for the very kind words. They mean the world to me.

                    sandymarie, thank you for your kind post. I really believe there is an autoimmune connection in there somewhere, I just don't know what that exact connection is. So many of us have fibro, chronic fatigue, IBS, and other direct autoimmune diseases, like myself, I have Crohn's disease.

                    As far as the B&O suppositories, I have read, and since been told, that you can take up to 4 per day. I use the 16A which is a higher dosage than the 15A. They make a big difference in my pain levels, even if just for a short while. I use two a day on average.

                    Hopefully one day we will find out just exactly what the connection is with all of us and our bundle of illnesses.

                    Hugs to all, Sandy
                    Last edited by SandyRN; 06-01-2007, 04:00 AM.
                    *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

                    • #11
                      Sandy,

                      I hope you feel better soon! It seems when it rains, it pours.

                      Thoughts and prayers headed at you.

                      -J
                      Most days I'm the eternal optimist , but on the days I'm not, for your personal safety and sanity's sake, stay away.

                      I have too many chronic illnesses to mention: so I won't.

                      "I could have missed the pain, but I'd have had to miss the dance." -Garth Brooks

                      "I will never give up on my dreams; I will simply modify my path for reaching them." -J (me)

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