Help! My husband talked to a doctor who doesn't know IC exhists!

[Mrs. Peel]

And now he wants me to "snap out of it."

I need one more week to have follow-ups with Uro and then the Gastro to see about this gallbladder, and will try to fit in the exam then gyno wants to give me for a cyst that showed up on last month's CT scan.

How can I get him to wait a week? Every time I ask, he puts his foot down because he's in an unbreakable denial right now.

Karin

[dg2901]

My first question to the spouse would be "why are you discussing my health issues with another Dr?". While he might be trying to help you, its really none of his business to be discussing with others, be it with a Dr or not.
Regarding his comment to you---I cant repeat what would have come out of my mouth.

Wishing you well...
D

[Smokey]

i agree he has no right to ask a doctor about your health issues. sorry to say it sounds like your husband doesnt trust or believe you

[ICNDonna]

:grouphug:

Donna

[KarenAnne]

What kind of dr. did your husband speak to? Can you take him with you to the diagnosing urologist's office for your follow up? Is this other dr. aware of the federal medical privacy laws? A dr. can not discuss a patient's case without written approval from the patient, even if it is a spouse or parent.

I agree with "D". You'll need to set boundaries with your husband. Unfortunately, it doesn't sound like he is being supportive of your illness. Maybe you can use a friend or other family member for support.

[Mrs. Peel]

I was pretty shocked myself. The Dr. he talked to is our next-door neighbor, retired head of orthopedic surgery at a major Miami hospital. The Dr. has always been wonderful about stopping by if Grandad had a fall or didn't feel well.

I know my husband is just exhausted and at the end of his rope, but talking to the retired guy turned out bad for me. Now he thinks it's just stress getting me down. His level of denial is evident in the way he is ignoring my hydro photos.

I know this will blow over, but it was a real shock when my husband lowered the boom. He's always been right there for me the 10 years we've been together. I think I'll bring some ICA literature over to the neighbor, along with the pics from the hydro.

Thanks for all your support. It was great to have someone to run screaming to.

[Preacher-Girl]

Hmmmm. I think it's best to use another support. Even if it's a counselor to unburden yourself on once a week. I would just let your husband know you appreciate all he is doing to help but you can "take it from here". That sort of thing. He just seems overwhelmed to me. It might be good not to discuss your illness at all with him right now. Just let him know when you aren't feeling well and take care of yourself. Also, might be good to say thank-you for discussing it with the neighbor and if he really wants some info. he is more than welcome to have a one on one with your uro. All you need to do is sign a release. If you trust your uro he/she should be able to set him straight. I am hoping you have a male uro and they can have a "man to man" talk.

Men can be so silly. Sometimes, it is good to laugh it off (on the inside) and sidestep them. Most of them come around eventually. I know it's not the PC way of communicating but men are different when they communicate. It's all part of being married....but I am totally sure you know that by now. I know it's a drag but I think this is just a period of adjustment and you just need to hang in there.

[VickiB]

I'm sorry! It seems ironic that you said he thinks it's just stress getting you down. I wonder if he considered that his "snap out of it" and level of denial is possibly adding to that stress?

I think for some denial is a necessary stage to pass through before they come to grips with the reality. Hopefully your hubby will come around in time!

Vicki

[purpletomorrow]

Since when does he get a vote on what you do for your health? Does he own you? Does he think he does? His job is to support and love you, not to treat you like a possession. Time to set some firm boundaries for his behavior towards you? You will accept love and support, you will not accept orders or behave submissively.

His behavior has me all riled up.

laura

[ICNDonna]

I think I might want to have a talk with that doctor neighbor! You might even take him a copy of some IC literature.

Donna

[Goldfinch]

Not knowing you and not knowing your husband it's pretty hard to get a clear picture of what's happening. I'm sure both of you are fried, and understandably. He must feel helpless. Chronic disease is pretty hard to live with--whether it's you or someone you love.

If you haven't reminded your husband of this yet, your neighbor, sweet though he may be, is not a urologist, and he's retired, so probably doesn't keep up with journals or research, especially outside his field. If your husband had prostate cancer would he let this neighbor decide on a treatment program? No. Having a good neighbor is a great thing, but not for medical advice.

[Mrs. Peel]

We are under more stress than I've mentioned.

We are the primary caregivers for his 90-year-old Dad who is away at physical rehab just now, but it's only a few weeks before we're back to drool all over the house, poopy diapers, and washing our hands constantly to avoid recurring e-coli infections because his arthritis keeps him from washing properly. Grandad is also as noisy as a parrot, which can be wearing.

My husband has been covering my shifts at our store, so he is exhausted and was at the end of his rope. He's been crying a lot. It was really hard for him to watch me sleep for three days after my Hydro and not even clean up after myself in the kitchen. It turns out my electrolytes were off and my blood pressure was down to 87/56.

My blood pressure is back up to 100/60 and I'm going to work for four hours today. I was able to cook dinner last night. I think my husband is finding some hope, now, and getting back to his Southern Gentleman self.

Thank you, thank you all for standing up for me. This is the only place I could talk about it, because with friends and family it would turn to gossip which is never good.
Next time I'm chatting with the neighbor, I'll show him my Hydro pics. They are VERY red, and some look like ulcers. I'll get the details in my follow-up Thursday.

Thank you, again, my sisters.
:bow:

[Goldfinch]

That sounds truly challenging. Take advantage of your FILs absence and get some much needed time alone with your husband. He sounds like a great guy and a hard-worker.

Personally I would not engage your neighbor in ANYthing having to do with your medical condition--no pix, no consults, no nothin'. Just keep him out of it and keep him as a good neighbor. Boundaries, you know? Who knows, you may need to share a fence with him some day soon.

[KarenAnne]

So glad you are feeling better. It is easy to see that your poor husband is totally overwhelmed after hearing all the stress you both are under. May God bless you both.

[kadi]

Unfortunately many doctors who received their training years ago were taught that IC is a middle aged woman's problem, stress induced, & that hysterical women are prone to it. If your neighbor received his training a long time ago, that could account for what he may have said to your husband. I'd probably not spend time on convincing him about your illness, the one who needs to believe you is your husband... I'm glad he's coming around. I think the diagnosis is very upsetting, not just to us, but to those who love us...

[amaranthe]

I agree with Kadi. But, as far as your DH goes, whether or not he believes in IC now or not, he will believe it soon enough. After all, he is still in the "fix it mode", where he thinks if you just get to the right Dr. or fiind the right treatment then you'll be cured, better, or at least "back to your old self." He hasnt accepted yet that this is an incurable disease and they way you are now is the way your gonna be for the rest of your life. That's a big thing to come to terms with for him and for you. Yes, there are meds that can make you better by degrees, but nothing is gonna take this away and he just doesnt get that yet, but he will eventually.

Meanwhile, just do your best to let him know that you know this cant be fixed and that you arent expecting that from him or from anyone else. But, that you DO need his emotional support, and that is ALL. If he is overwhelmed with doing your job and his, it might be time to hire someone else, at least on a part time basis to help out. Just a thought.

I hope things get better soon!

Sending hugs,
Amaranthe

[tigger_gal]

{{{{{hugs**********
I agree this was wrong of your husband to do, but on the up side hopefully he did do it with good intentions. I would tell your neighbor that he shouldn't talk about what he don't know! some of our husbands can't grasp the idea that we can be sick with out looking the part. sending you great big hugs.

you know my gyn, told my husband to take me home, sit me down and explain to me there was nothing wrong with me, all I was doing was acting out to seek his attention. The worst part was this happened when my husband was a full time drunk! so I guess you know how that went! I did rip the dr a new one after treating me for pre cancerous cervical cancer. She sent me a bill. I sent it back with the dx of IC and no check, never heard anything again!!

[Mrs. Peel]

Thanks again, Ladies.

I'm sure I'll be better than I am now. There are things I won't be able to eat or do, but I think this flare was caught pretty early and I can hope for remission.

Tigger, that was one harsh gyn. Maybe she's an active alcoholic, too. They like to support eachothers' delusions!

Amaranthe, you seem to have guys almost figured out :). Thanks for the "Mr. Fix-It" reminder.

[Sally939]

Will he go to your follow up apt at your IC specialist's office?