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Kind of sad, could use support (long, sorry)

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  • Kind of sad, could use support (long, sorry)

    Hi,

    I know I am new to the boards, but I could really use some support. I am usually a very positive person, but lately, I feel like I could just sit and cry like a baby.

    I'm just going to vent a little so I don't break down emotionally.

    My list of medical conditions reads like the chart of an 80-year old woman, and I am only 31.

    Chronic/Refractory Epilepsy
    Lupus
    Sjogren's
    Celiac
    IC
    GERD
    The list continues on and on...but I'll stop.

    I have been poked, cut, bruised, scanned, and biopsied more times than I can count. Honestly, it is too much to think about at once. To be frank, I hurt somewhere on my body all the time. I dread "routine" check-ups at my specialists' offices because they always find something new wrong with me, usually via bloodwork or biopsy.

    I have a Master's degree that I worked so very hard to achieve, but I am currently unemployed. No one wants to hire a person with chronic seizures who can't drive. I take between 20 and 30 prescription pills a day just to survive.

    The part that makes me so mad I could scream is that I truly want to be an active, productive person in society. I am a good, happy person who is stuck in the body of a sickly person.

    If you read this, thank you. I just needed to "unload" on someone besides my husband.

    God Bless. -J
    Last edited by Privatepain; 05-30-2007, 12:15 PM. Reason: wording
    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)

  • #2
    I know how hard it is to have so many things wrong and be so young. I am 36 and when I tell people what has happened to me, I get "But you're so young." Do ya think I asked for all of this to happen? I also know what it feels like to have an education and then spend most of your time at the doctor...it stinks. Hang in there and feel free to vent anytime, ok? That is what we are here for!

    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


    • #3
      ((((((((hugs))))))))
      I am so sorry you are feeling so down.. I know I get like this sometimes..Please remember we are all here for you.. You can vent to us anytime.. I sure hope things get better.. If you need to talk you can PM me anytime..

      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


      • #4
        Thank you both

        Thank you both so much for replying. I actually feel a little better just writing about it. I usually do...I like to write poetry; it's an excellent way to vent. But sometimes, I just need to "tell somebody." Even if it's just on the computer. A therapist can do wonderful things, but everyone needs to talk to someone who's "been there" occasionally. Family, friends, and therapists are a great support, but ultimately, they have no idea what it is actually like to be chronically ill day-in and day-out. Bless you for taking the time to respond. -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)

        Comment


        • #5
          Anytime..

          I love poetry to I even write some here on the boards and share with my IC friends so if anytime you would like to share them that would be great!
          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


          • #6
            That's what is go great about the ICN. Everyone who comes here understands. That's why Jill started the ICN. Please feel free to express yourself with posts and with poety. Getting all the frustration out that IC can cause is very therapeutic. (((hugs)))
            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


            • #7
              First, never apologize for venting here. I have had a bad year and have come hear alot to vent. My daughter who is 19 has had seizures since she was 4. At first they told me she would die and not make it out of the hospital. It took many years of trying different meds and many scary rides to the ER, but she has been on Neurontin since it's inception. She is pretty well controlled, no grand mals but also has not been able to drive. The part of the brain that is effected controls her eyesight in the left eye and although her neurologist ok'd her to drive she was scared. Well, she quit college came home and has a full time job and most nights gets off at 11:00 p.m. I or my mother (when I have my son at home/divorced) have to go and get her. She is going Friday to take her driving test and I pray she gets it, but am also afraid of her driving. I have told her she is only to drive to and from work which is only about 1/4 of a mile through a subdivision. But if she has a seizure she can not drive for six months (a law). I know she has been frustrated and I am sure you are too, I can't imagine not being able to drive. Where I live you must, due to being a suburb and no bus service, etc.

              I too get tired of being sick and seeing drs. like so many others here. So welcome and vent, scream anytime the urge hits you.

              Comment


              • #8
                Sharon is right on target. Everyone who comes here understands and has been where you are right now. Vent as much as you need to.
                mom_in_ma

                Comment


                • #9


                  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


                  • #10
                    privatepain...

                    i know how you feel...please, vent away, it makes me (and others i'm sure) feel less alone. i myself am going thru a horrific day and the ladies here have helped a lot. i'm only 28 but feel like 100...and have the medical issues to prove it lol.

                    email/pm me anytime.

                    tracy
                    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                    I'd like to be on House, MD as a medical mystery.

                    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                    Connor & Mommy by the tree:


                    Connor with Santa...so happy!


                    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                    Comment


                    • #11
                      Wishing you happier days ahead!

                      Diana
                      (\__/)
                      (o.O )
                      (> < ) This is Bunny. He's on his way to world domination.

                      Comment


                      • #12
                        Thank you everyone!

                        I appreciate all of the encouragement. I think I am just frustrated because everything seems to be flaring at once. My bladder hurts, my seizures are nonstop, my whole body aches (joints)...anyway, enough about all that. You all have been a great support!

                        Blessings everyone -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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