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  • #16
    I understand

    ...after all these years of gyn problems w/surgeries (4...soon to be 5), the IC and Fibro, I think my hubby is finally understanding as best he can that this is not going away. Also, when they see you suffer and go through another surgery, they feel helpless (like we don't????) and lash out because they really don't understand it. I never can tell when I'm going to get a big kiss before he leaves for work in the morning, OR the silent treatment where I just hear the garage door go up letting me know he's leaving for work. I just got out of bed 2 hours ago. He got our sons off to school and asked me if my treatment (instillation) didn't work yesterday (because I was crying this morning when the alarm clock went off). Just two days ago, I was able to get up early, get the boys off to school and do the dishes. I know he (and I) were hoping I was doing better, but tomorrow is always full of surprises. After talking to so many women about the way men act, it's obvious that even the most caring husbands 'act out' their frustrations which end up hurting us. We would just like it to sink in that we didn't ask for this disease, we would rather be out of bed, off the couch, outside playing with our kids, etc.., but our bodies' don't want us to do this right now. I've told my hubby that even his asking if I want a cup of tea, or him saying 'is there anything special from the store you can eat that I can get you, can make a great deal of difference in how I fight this disease. With support, I try harder, even if it hurts, to do more. If I get those snide comments, I lay on the couch and cry. I truly understand your sadness. I just started counseling this week and she asked me if I tell my husband not just how I feel physically, but how feel emotionally/relationship-wise. I promised her and myself I would talk to him more this week and not keep it all inside. My husband is a military brat, so it's another world for him to have to deal with someone who can't pull her own weight...so to speak. I think he's coming around, though. I really, really hurts when he acts up and says things. His sister (who is a NURSE) told me I should exercise more and had never heard of anything even close to I.C.. Different mentality. I'm having a bad day today physically, but my hubby has been caring today. I must thank God for that, because it's usually not this way. I'll pray for God to touch your husband's heart and mind to make him realize he must be with you in all things...good and bad. He'll wake up soon. I'll be praying for you all.

    Danita


    Originally posted by GriffsMommy View Post
    I do not know what is up with Shane (hubby). He has been acting very distant and kind of stand offish for the last day or so. I asked him what's wrong and he said something like he doesn't know but he is not acting normal. I think that it has something to do with me feeling like crap all the time. I was really really tired all day yesterday and in pain, I don't know if this is still from the anesthia from the hydro last Wednesday or what, but I'm still not feeling like myself. He made dinner last night because he knew I was feeling bad but when I came home and said I didn't feel well he made some snide comment about how he knew I was going to feel well in advance. He basically was saying that I ALWAYS feel bad so he isn't surprised. He makes me feel like I'm annoying him for feeling like crap all the time. I wish that I felt better, I hate feeling like crap all the time and then he makes me feel bad on top of it. Sometimes he makes me feel like he doesn't believe that I feel bad all of the time, like I'm faking it. I just needed to vent, have to start work in a minute. Thanks for listening
    Dani


    -Bladder surgery to correct reflux-'68
    -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
    -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
    -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
    -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
    PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
    -DX'd with IBS in 2000
    -Rhabdomyolysis in 2001 (has not returned)
    -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
    -DX'd with TMJ in 2000-wear splint
    -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
    -DX'd with Epilepsy -2000
    -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
    -DX'd with Fibromyalgia (2006)

    Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

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    • #17
      Sorry he's being a jerk! My husband has also made little sly comments here and there about my not feeling good, or taking pain meds and it really does hurt my feelings. I know he supports me and believes me that I am in pain, but I think that our loved ones just get frustrated sometimes and men, well, they aren't the best "communicators" in the world, especially when they are frustrated.

      I think men just like to "fix" things, and its hard for them that they cant' "fix us", know what I mean? Your husband just probably said that out of his own frustration and not to hurt you And I'm sorry he did!!!

      Biggest hugs,
      Kara
      Hugs and Wishes for Pain FREE days!!,
      Kara


      www.loveforearth.net ~reducing plastic waste one bag at a time~

      Facebook: Kara Kaiser
      Twitter: Love4Earth

      Me and my Guccigirl... she helps me through those painful hours!

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      • #18
        When my husband acts like that when he has had a bad day and he doesn't feel well, and he needs attention.....

        I finally figured that out since men won't tell you when they are having a bad day.

        Colleen
        Diagnosed October 2006
        Medications
        Percocet
        Hydroxine
        Elmiron
        Monthly installations

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        • #19
          Well he must be having a bad day because I just called home and he about bit my head off. He said there are a million things going on, like it's my fault. I didn't know it was crazy, well I guess I should have, the three older kids and my MIL all just got home. I know this is his least favorite time of the day. They all come home at the same time and are all really loud and annoying all at once like that, hopefully he'll be in a better mood by the time I get home or I have a feeling it's going to be a bad night
          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


          • #20
            I know it is hard to deal w/us feeling bad all the time..

            Your son is very cute I see that you live for him and you seem so proud.. I can relate with feeling like a total drain on everyone expecally your husband..IT makes me so sad but I do have a little advice (when) you are feeling better do alot of special things for him ..Like back rubs, breakfast in bed, wash his car, So that when you are feeling bad sweet thoughts of you will go threw his mind....One thing you can do whill you feel bad leave him notes that say how much it means to you that he is steeping up ...And how special he is I am so sorry you are feeling bad
            slavetothepoddy

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            • #21
              bladder photos

              Christine,

              This may be a dumb suggestion, but it helped me. After my hydro/cysto my doctor brought photos of my bladder to my bedside for me to keep. She showed me & my husband a photo of a healthy bladder and then there were the photos of my pathetic bleeding-everywhere-bladder. It was a dramatic difference. The pictures said it all. Maybe you can ask your doctor for these photos and show them to your husband. Maybe it will help him understand. THat's the thing about IC. If we fall and break a bone or skin our knees, everyone can clearly see our ouchies. But obviously our bladders are hidden and so is our pain.

              Before I was diagnosed my husband would get soooo put out, especially when we were on road trips and I had to pull over at EVERY town and sometimes if there was no town I would make him pull over and I would just go on the side of the road. he hehe. A girl's gotta do what a girl's gotta do right !!!

              But after he saw that this is REAL he really got it. Since then (4 years ago) he has not once complained or even grumbled or sighed when I ask him to pull over. I feel very lucky that he has become so compassionate. If he is annoyed, he certainly keeps it to himself. I am so blessed.

              I hope and pray that your husband will come around for you like mine did.

              Lee Ann
              Lee Ann
              Current Rx Meds:
              Atarax, Ditropan, Elmiron
              Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
              Hooray for babies!
              Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
              Didn't work for me:
              Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
              IC (Mod-Severe) since 1996

              UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


              My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

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