Announcement

Collapse
No announcement yet.

Someone To Talk To

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Someone To Talk To

    Hey, this board seems pretty dead, but it's worth a shot.

    My girlfriend of 10 months, whom I love very much, was recently diagnosed with IC and vulvodynia. It's so terrible to see her in such a bad physical and emotional state, and this is only worsened by the fact that we're a long distance couple because of where we go to college.

    Her illnesses and our distance have put a strain on our relationship to an extent. Although we are definitely improving and are trying to fight this disease together, we still have a long way to go.

    Of course, my struggles are nothing compared to what she's going through, but looking through the other posts on this forum, there seems to be a general consensus that being the significant other of an IC patient is by no means an easy process. I guess I'm just looking for someone else in a similar situation to mine who I could talk to via email or something else. Someone with whom I could compare situation is and turn to for advice in certain moments. I don't care how old you are, it would just be nice to have someone to talk to.

    Is anyone here? Talk to me!

  • #2
    hey Jon you betcha. I'm Faithc and I'm sure my hubby can help.
    • History :
    • 2012 - July 6th -Diagnosis IC/Irritiable Bladder + Chronic Lumbar Pain.
    • 2012-2011 - Steven Johnson Syndrome/ Erthemia Multiform.
    • No medications of any kind were allowed during my 1 1/2 year healing process with this diease.
    • 2007-2005 - Bladderstone Removal and Kidneystones.
    • 1990- Gallbladder stone/ Gallbladder Removal.
    • Medications:
    • Elmiron - 100mg 3x daily
    • Elavil - 10mg @ bedtime
    • Atarax - 10mg @ brdtime
    • Loritab - 5.5mg as needed

    Comment


    • #3
      Fisrt of all to the forum You are not alone and You are very wonderful for reaching out to talk to others on behalf of your hunny, so you can support and love her up!!!!!! But you have to be filled too, and the first step is Hope and thats what you'll find here - lots and lots of hope. I'm a new ICer and my husband has dealt with a chronic pain all our married life - me. Seriously, my husband has been an over the road cable and security systems technician, so he has had to deal with long distance issues too. There are also on the main forum down at the bottom of the page are links to finding IC Meetings in your area and doctors,/support groups where you might be able to hook up with help face to face. Your sweetheart sounds lovely and amazing and your both blessed to have eachother. You are not alone now... You are among friends. Faithc
      • History :
      • 2012 - July 6th -Diagnosis IC/Irritiable Bladder + Chronic Lumbar Pain.
      • 2012-2011 - Steven Johnson Syndrome/ Erthemia Multiform.
      • No medications of any kind were allowed during my 1 1/2 year healing process with this diease.
      • 2007-2005 - Bladderstone Removal and Kidneystones.
      • 1990- Gallbladder stone/ Gallbladder Removal.
      • Medications:
      • Elmiron - 100mg 3x daily
      • Elavil - 10mg @ bedtime
      • Atarax - 10mg @ brdtime
      • Loritab - 5.5mg as needed

      Comment


      • #4
        Thank you so much for your kind words and for your quick response! I've sent you a private message with my email, so if you want to pass that along to your husband I'd really like to talk to him.

        Good idea about looking up a support group, and I will definitely do that!

        It's just difficult, knowing that she's in so much pain and that I'm so far away. That said, I do have hope, and even before she was diagnosed I was always trying to keep her spirits up. Part of that is me being a much more positive and optimistic person than she is, but it's nice to have that balance. She's doing a lot better than she was when she was first diagnosed a week ago, but she/we still have a long way to go I think.

        But again, thank you so so much for your advice. It means a lot to me and to her to know that we're part of a bigger, cohesive team that is fighting this awful illness!

        Comment


        • #5
          Jon, does she know about this forum maybe? and it could lift her up too!
          • History :
          • 2012 - July 6th -Diagnosis IC/Irritiable Bladder + Chronic Lumbar Pain.
          • 2012-2011 - Steven Johnson Syndrome/ Erthemia Multiform.
          • No medications of any kind were allowed during my 1 1/2 year healing process with this diease.
          • 2007-2005 - Bladderstone Removal and Kidneystones.
          • 1990- Gallbladder stone/ Gallbladder Removal.
          • Medications:
          • Elmiron - 100mg 3x daily
          • Elavil - 10mg @ bedtime
          • Atarax - 10mg @ brdtime
          • Loritab - 5.5mg as needed

          Comment


          • #6
            Jon last post before my day begins as homeschool teacher to my crew... Give your hunny a big cyber hug and kiss and squeeze . The first week is the hardest to come to terms with so much information and to be apart from eachother. One way to close some of that gap is to change the words you use, when you talk to close the physcial distance between you. Instead of what time do you want me to call for our evening" talk" say EVENING CUDDLE. Instead of "discussing" say "COUCH TIME" USE VERBAL imagery to hold, cuddle, snuggle and make your voice soft and fuzzy or baby talk her so she feels held. We did this and we are still married 28 yrs. have a good day. Faith.
            • History :
            • 2012 - July 6th -Diagnosis IC/Irritiable Bladder + Chronic Lumbar Pain.
            • 2012-2011 - Steven Johnson Syndrome/ Erthemia Multiform.
            • No medications of any kind were allowed during my 1 1/2 year healing process with this diease.
            • 2007-2005 - Bladderstone Removal and Kidneystones.
            • 1990- Gallbladder stone/ Gallbladder Removal.
            • Medications:
            • Elmiron - 100mg 3x daily
            • Elavil - 10mg @ bedtime
            • Atarax - 10mg @ brdtime
            • Loritab - 5.5mg as needed

            Comment


            • #7
              She does actually! She was the one who told me about it haha. I'm not sure how much she posts, but I'll try and give her a nudge to get on here more!

              Those tips sound great, and I really appreciate the support. It's even harder right now because I'm in England for the next month and a half, and although we got to spend 2 whole months together this summer, there's still a 5 hour time difference between us!

              We're managing though, and at least we are still Skyping every day. Have fun teaching, and thanks again!

              Comment


              • #8
                JonHud, how are you and your sweetheart? I just saw your thread today and wondered about how things are going for you. I just recommended this forum to my husband today because he actually cared enough to ask me for a link to it. He has always been really supportive of me and sympathetic about my IC. He has learned how to do my catheters even! Talk about supportive!!!
                I'm hoping he will see your thread and reply. : )
                (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


                • #9
                  Hi, JonHud ~ This is the first time I've seen your post also and am hoping you're gaining some support and confidence in helping your girlfriend and that she is finding pain relief. My hubby doesn't get on the computer much (we're older! Haha) but he is so kind to me. Times when I've just been moaning on the sofa or in bed without even knowing I was, instead of getting annoyed, he'd come to me and ask if there is anything he can do like put my rice bag into the microwave, etc. Knowing he cares means so much. Just like DaisyMae, my hubby has also learned to do my instillations so I didn't have to drive to the doctor every day. Being understanding is the greatest. I know in the beginning of my symptoms and diagnosis all my hubby heard was bladder, bladder, bladder. Today I ran up to him and said, "Guess what? I'm in NO pain whatsoever". He smiled so much and it made my heart happy.

                  You are so wonderful to come onto this site to get help. That shows so much about how you care about your girlfriend. May you both hang in there together......in time, whether it seems like it or not, things may get better and better.

                  Blessings to you both,
                  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

                  Working...
                  X