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  • husband died saturday

    My husband died after going for a walk, they found him down the road dead. He had a massive heart attack, he was 49 .......he was my whole life and me being disabled was my caretaker. we have no family close by, but they are coming in from out of state. funeral tomorrow...i just don't know what i am going to do.
    here i was trying to get ssd and got denied and we were supposed to see lawyer today....
    IC since 1980,Interstim 5/25/2005, Hyst, Deg. disk disease, VV, Hydrodistentions every year,urine capacity 175cc; Synthroid,, Biodentical Hormones,Atarax,Trazadone, , Anxiety,Depression, diagnossed with Huntingtons Disease 2003 ....RN

    my story:

  • #2

    I am so sorry for your loss. Please know that you are in my thoughts and prayers.



    • #3
      Oh my gosh, I am so sorry... what a shock. You will be in my thoughts

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. 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.


      • #4
        Oh my...I'm so sorry for your loss. Please take care of yourself. You are in my thoughts.


        • #5
          Jazz, I will be praying for you and your family. So very sorry for your loss.
          IC; PFD; possible Fibromyalgia; IBS;

          Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

          I've Tried:
          three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
          Currently using:
          Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
          Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
          I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


          • #6
            My heart goes out to you. I lost my husband a little over a year ago & the transitions that I'm still making are overwhelming. I iwsh I could be there with you so you could use my shoulder to cry on. If you need to talk please e mail me. Kathi
            One Day At A Time


            • #7
              Jazz, I am so sorry to hear this. Please know we are all here for you. You will be in my thoughts and prayers. If you need to talk I am here for you too.
              'The will of God will never take you where the Grace of God will not protect you.'


              • #8
                Oh I am so sorry...My thoughts and prayers will be with you...

                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:

                Diet Reference Sheet:

                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.


                • #9
                  Oh god that is so so sad. I really am sorry for your loss and I can only imagine what pain you are going through! What a shock for you and he died so young too, that is terrible.
                  I wish I could say something to help you but please please stay strong, your husband would want you to fight and stay strong for him!
                  I am sure he was a lovely man and its so terrible he has been taken away from you when you need him so much
                  Started with symptoms 2004 after a severe infection.
                  Was diagnosed with IC Feb 2006 after cystoscopy.
                  Diagnosed with vulvodyina and PN in july 2006.
                  Dignosed with ME and IBS Oct 2006.
                  Currently taking Amytriptaline 50mg, regular pain killers and birth control!
                  Also doing IC diet and regular use of heat packs.
                  Still struggling with IC and controling my symptoms so looking for some help

                  also recently had abnormal pap, CIN III and just had LEEP done 2007


                  • #10
                    Oh no! So young! :frown: I am so sorry to hear this, I can't imagine..... I hope you'll take Kathi up on her offer since she has experienced the death of a husband as well. I bet she'd be a great support.

                    Lots of prayers for you.

                    Diagnosed August 2001

                    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


                    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


                    • #11
                      I'm so very sorry for your loss, what a trauma this has been for you! Please take care of yourself during this difficult are in my prayers....HUGS to you......
                      Thank You all so much to everyone here for all your sharing, caring and support!
                      < My "Bear"
                      Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
                      IC Diet
                      Hydroxyzine 50 or 100mg at night (Is restarted)
                      Zoloft 100mg 4/8/07 (Is restarted)
                      Klonopin 1/2 mg 4 X Day (started 3/17/07)
                      Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

                      Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
                      Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention

                      My Myspace page -


                      • #12
                        Oh, I'm so sorry for your loss. This is horrible. I hope so much God will be with you and will get you through these difficult times to better times. I hope that time will bring you some comfort and heal your grief.



                        • #13


                          • #14
                            No Words

                            There really aren't words in the English language to express this kind of loss. Please express to your family how much help you need now. I'll be praying for you. My concern is for you...... you are going to need a lot of support and I pray your family and friends can come along side you and give you everything you'll need.

                            I'm very sorry, but I know these words coming from the computer don't really cut it.... but know that each one of us mean it from our hearts.



                            • #15
                              I'm so sorry.

                              Stay safe

                              Elmiron Eye Disease Information Center -
                              Elmiron Eye Disease Fact Sheet (Downloadable) -

                              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:


                              Diet list:

                              AUA Guidelines:

                              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.

                              Anyone who says something is foolproof hasn't met a determined fool