Partner of newly diagnosed.....advice

[Dachipsta]

Hello folks.
I am engaged to a wonderful woman who was recently diagnosed with IC after 1.5 years of misdiagnosis. Our worst fear was from one of the diagnosis of Endometriosis which put our thoughts of having a little one into jeapordy. Since the proper diagnosis, that thought is now relieved but the reality of her condition is now hitting the both of us full force. Recently, she had to leave her job because of ignorance on the part of fellow employees that saw her illness as just an attempt to gain a free lunch...be able to come in late, take lots of breaks...ect. Total BS but it is what it is. She is pretty devistated becasue she had read about that happening to women with her condition but never thought it would happen to her. Her work was seemingly a very family-like environment and seemed so as she was seeking her diagnosis. Once she WAS diagnosed however, everything took a turn for the worst and all sympathy for her went out the window. Its almost like becasue she didnt wind up with Cancer or Aids or something else that everyone knows about, she is now a damn faker and deserves to be punished. She is the sweetest woman and has done so very much in the past to help others when they were down. Now, to have her be treated this way when she needs help is just utterly discusting and ****** me off to see her have to endure this.

Needless to say, there are a lot of raw emotions between the two of us, not against each other at all, but just at life in general and how God could do this to her after all the care she has put into helping others. It seems as tho Karma is just a word and it doesnt really matter if you s--t on others or treat them well. Life will do what it wants with you as it sees fit.

I am just coming here among you to ask for some advice. Lately, we are both under immense pressure. Her due to her illness and now lack of employment and me as I am trying to cope and rehab from a 2 level disk herniation while trying to finish prepping my home to get on the market to sell soon so I can move and be with her. Yes, in addition to all we are contending with, we also live 900 miles from each other so just simple hugs and loving looks at one another cant even be had during this tough time. The stress, I'm afraid is reaching a very high point as she seems to be distancing herself from me a bit and secluding herself. We just talked last night and it was mainly about how she feels she needs to accept the fact that she has a disablity now and wont ever be the same. I really need some advice because I dont think I am helping and have even drew comparisons with my back injury which I dont think was a good idea. I now feel like I may have sounded like I was trying to top her or something and play her deal down. I really wasnt. I just want her to feel better about herself. She is taking things pretty hard and I cant even be there to give her a hug, kiss or anything. I feel rotten as I have procrastinated my moving for a while now and with the new diagnosis, I want to be with her at all costs and I wont be able to until I sell my home in a now, slowing market. I know she is the one with the IC and having to come to terms with a very demoralizing thing. I feel like my problems are so petty now and feel guilty for even coming here to ask for advice.........thank you all for listening.......

[leelee88]

Hello and Welcome
Let me just start with this, I applaud you for taking the time to ask for help concerning your partner..She is very lucky to have someone care for her like that..

Now as far as her distancing herself from you, I think thats normal for all of us who just finds out about having IC, we are just as scared and concerned as are love ones. I know I was and I would get in my moods and feel worthless and think my husband would just be better off without a sick wife, but bless his heart he wouldnt here of it and has always been 100% supportive. I think with him loving me like that it gave me the strenght to fight this disease, so please dont give up on your partner and let her know you are there for her..

You have to understand, this is a very painful and emotional disease it plays tricks on our minds, well it does me, because I will start feeling great, and then all of a sudden I feel like im going to die, its very frustrating to not to have many people know about this disease to, every time I try to explain to someone what I have they think im crazy...

So I would suggest to you try to learn as much as you can to help your partner in this long journey, I have found I have learned more on this site and handbooks then any drs have givin me...


Well I hope she gets to feeling better and hope yall can be together soon..and let me add one more thing..
God didnt do this to her, God dont make people sick.. Thats all the devils work:smile tee

[humpieumpumkin]

Dach:
First of all :welcome: I am very sorry for you and your partners recent hardships. Alot of us here have work related troubles due to our IC including myself, so I can understand how frustrating this is for you. Mental ilness is also very common with this disease. Anxiety, depression, and seculsion to name a few. IC affects a special part of the brain due to the internal nature of the pain. This pain is described as being 'agonizing' (see Patient Handbook) This is different then say a broken leg that would be sent to another area of the brain. The patient handbook includes all of this information plus information on self-help, a specail diet, and information for loved ones. You can find this link on the top of this web page. Good luck and I hope you get your house sold soon!:pray:

[futurehope]

1 - It's possible you believe that somehow you should be able to earn your way into God's graces. That is just not true. "All have sinned and come short of the glory of God" - even Mother Theresa. Sick children are born every day. They don't deserve it. That doesn't mean that you start behaving as if your conduct or character do not matter. They do. Just no guarantees in this life. We are living in a world where it "rains on the just and the unjust".

2 - Your girlfriend/fiance is going through a major adjustment right now. She's possibly concerned that she will not be able to contribute financially and feels bad about that. BTW, it's possible that with the right combo of meds and the right doctor, she'll be able to work. She's probably wondering if you really want to put up with her disability. Like I said, with the right treatment, she'll probably be good to go.

3 - You have a lot on your plate right now with selling the house and all.

Just be there for her, even in her down moods, and show her you're not going anywhere. Hopefully she'll see your devotion and that you're not leaving.

Better days are ahead, and together you can see this thing through. At least it's not a death sentence or sterility problem you're dealing with. Tell her about this forum and the helps that are on it.

Here's to better days ahead! Give yourselves time to adjust.

[Dachipsta]

Thank you all very much for replying. I know God didnt do this and regardless of how it occured, we are in this for the long haul. She is because of the obvious, I am because I have never loved anyone the way I love her and had resolved to spending the rest of my life with her well before this condition ever came into our lives. Abandoning her out of inconvienience would be an absolute selfish, egotistical sin of unimaginable proportions that I would never even contemplate. She has weathered the storms of many emotional and physical hardships that no one should ever have to endure. As she was emerging from the darkness from those things, this condition couldnt have come at any worse of a time, at least I dont think. The only advantage that this has that I can see, is that we have grown so accustomed to dealing with traumatic events in our lives, that we are kinda versed in supporting each other. I'm not saying its getting any easy becasue of that cuz its not. Its actually harder now because for a while we were managing the distance thing, which most said wouldnt ever last anyways, pretty well but in light of the IC, it has made the distance issue almost unbearable. I dont think either of us have ever been under as much stress as we are under now. I know I have never been this stressed out. I wont get into me becasue me is not why I am in here seeking advice. I am only relevant in that I want to be a source of comfort and assurance, and not be a contributor to her distress and discomfort.

FWIW, she has drastically changed her diet and done really good to stick to the changes. The doctors seem to be handing things a bit better since the diagnosis came to pass. Although before I was unsure of whether or not they should even have been licensed to practice. She has a lot of inner strength but now its just being taxed to its limits and I totally understand if she isnt herself sometimes. I am just confused and really want to do the right thing. I always am assuring her that its..."In sickness and in health, for better or for worse.." all the way and I love her always. No matter what gets dealt our way, no matter how sick she is, I will never grow tired of being on her team. We ARE a team and we are going to make it thru all this crap, be living together soon and on the road to getting her and our lives sorted. I just needed to share all of this as it has begun to weigh a bit heavy lately. It is no means any reflection of my dedication to her or that my patience is growing thin. Its actually quite the opposite becaseu if that were the case, I wouldnt be in here asking for help....Thank you again.....God bless

[VickiB]

I think it's wonderful that you are here, looking for answers and ways to be supportive! I am lucky enough to have a loving, supportive husband, and I can tell you that it makes all the difference in the world enabling me to deal with my IC!

When I was first diagnosed I was really down. They tell you what you have, then tell you they can't cure it, leaving me struggling to accept that these symptoms were just something I had to learn to live with. -Not a happy time! My life was in the toilet and looked like it was going to stay that way! Then I found this site, began the IC diet, started meds, and learned a few tricks for living with IC. My IC no longer runs my life, and at times I even forget I have it now. I guess what I'm trying to say is that I think it's normal for your fiance to be looking inward at this time. Give her that time, and your love. This disease takes a lot not only from those who suffer with it, but from their partners and loved ones as well. Kudos to those who stand by us, believe & support us!

I want you to know that the majority of us do find treatment that helps, and hopefully she'll be one of those! Have faith!

Vicki

[kari1980]

Dachipsta........I have to tell you that when I was reading your post, I had tears in my eyes! I think it is so wonderful that you are here looking for answers to help support your fiance and understand this disease. I was diagnosed in 1994 and my husband still has no clue as to what I am dealing with, so I commend you....Let me just say from my own experience that the first few months after the diagnoses are really hard. Your dealing with so many different emotions, such as "why me" and how am I going to deal with this and how is my partner still going to love me?...But after you get over the initial shock of it, then you start to realize that you can manage this to some degree and still go on with your life. It may not be the same as before, but you can go on. I have always worked and still do, so that is still a possibility for her. It's terrible how her co-workers have treated her, but hopefully she will find something else that's even better. Please encourage her to get as much information as possible, the best place is on these boards because everyone here has been through it and can give you so many great ideas and tips. Her diet is probably one of the most important things to get started on, because it really does help.
Everyone here is more then willing to share and to help with any questions she or you may have. It's really hard in the beginning, but hopefully over time she will find ways to manage it. There will be many setbacks and bad days, but many good ones to.

I hope it all works out for you moving to be with her and that she gets the love and support that she needs. She already has you, so that's a big plus for her already! My best to you both.

Kari

[Dachipsta]

Thank you Kari and Vicki and to everyone else again who posted in reply. When I started this thread, I was feeling as tho I was messing up and not helping. I felt that I was saying the wrong things and making things worse. By reading what ya'll have posted in reply, I feel like I AM helping just by being interested and just WANTING to help. I have always been one to place a lot of pressure onto myself in worrying that I am making mistakes. I think I am getting it. I have a long way to go but with folks out there like ya'll that care and want to help others, it sure makes me feel alot better and I know that my fiance feels the same way about this forum and others like it. We just spoke a few minutes ago and she was kinda blown away that I was actually in here posting. She copied what was said on this thread and put it in her folder with all her IC stuff to go back and look at when she needs a little boost or gets to feeling down about things. I'm not doing this to gain browinie points by any means but it sure felt good to hear the happiness in her voice when we talked about it........:) Thank you all again so very much. I will be around here alot more I'm sure in the days and weeks to come.

[pingpong]

I think your finace should read this thread!

[kuntrygurl78]

I applaud you for just being here! Ill never forget what my fiance did when I was first diagnosed. I had forgotten to cook myself something to take to work for dinner one night. I was in a panic because I was in the elimination part of my diet and knew I couldnt just grab take out. While I was in the shower, he jumped on this site, and found something quick and easy for me to eat that night. BTW..hes also a trained chef:woohoo:

Ill never forget what he did that day. If it werent for him and his support, I dont know what I would do.

Cant wait to meet your fiance. Tell her she is welcome here anytime!:welcome:

[ChipsButterfly]

:grouphug:
Hi everyone. This is Mary, Chip's fiance. Thank you all so much for repling to his post and all the wonderful advise and support. He is here with me now and I am trying to get my life in order. I thank you all so much for taking the time to write. I know I am especially blessed to have Chip in my life, and I know not all partners take the time and effort to try and understand this disease or try to help. He has (and is doing) so much for me, and I appreciate him so very much. I am learning to cope and trying to figure out what to do with my life at this point. I need to find work, but I know I need to get my IC under control first.
I know I am blessed, and I know that there are so many other things that could be worse. I hate it when other people tell me that, but it is true and it is something to think about. Besides, these are the cards I have been dealt and I can deal with it. With God, Chip's help, and all of you here. I hope one day to be at a point where I can help others too. Maybe just by being here and listening to people. Yes, it's hard to deal with. I think the hardest thing I am trying to come to terms with is that it is permanent.
I have been stubborn and not drinking enough water, I know that is important and I need to keep my bladder flushed out (I think that is the reason anyway) but I know drinking will make me go to the bathroom often and it hurts so bad. If I don't drink anything, I don't go... but when I do it's so painful and I am seeing more blood in my urine. I am sure that is not good. I know I need to get my mind around this, and I am trying....
Thank you all so much for writing. I am sorry it took me a while to get on here and post, I had a little trouble registering, but with everyones help, I was able to get on.
I have what may be a silly question, but does the cold affect anyone as in making symptoms worse? We are in a cold snap here, it's in the teens tonight and it seems like whenever I get out in the cold, as soon as I get to shivering, it hurts my bladder so much. It's almost like a muscle spasm. Is this normal or am I just odd? I mean, I know I am odd... haha... but wondered if this was normal.

Thanks again, and I will be posting again soon.

[TaysProudMama]

This such a beautiful act of kindness on your part to reach out for help for your partner...not many would think to do so...IC is very personal to me and sometimes i feel as if no one understands what i am feeling or even cares anymore about what i'm going through..i also went through others deciding that since i wasn't dying,IC was not a big deal and I should just "get over it"...i felt as if IC was something I should be ashamed of and I found myself pushing my family away and curling into my own little shell where no one could judge me or ridicule me...this is probably how she is feeling...the only thing that has made me feel comfortable and safe is the support of my husband, who,even at the times I would lock myself in our room would still be at the door asking if I needed anything..try not to take it personal and remember how much both of you have going for you now..stress is a big factor in IC and hopefully once life settles back to a normal situation for you both, she will find more peace with her IC :) Good luck!

[VickiB]

Hi Mary, glad to have you join us!

I understand what you're saying about IC being the cards you were dealt, I've written that so many times myself! Unfortunately, we can't simply fold and leave the table!

And the part about others saying 'it could be worse...'. The day I was diagnosed I had a three hour drive home from the Uro, so lots of time to think. How others didn't understand what I was living with, how unfair it all was, why me, and all sorts of feeling sorry for myself thoughts. When I came home, my husband was on the phone with a fellow who wanted to know how long it would be until he received one of the products my husband sells. It seems he had inoperable cancer, had been given 6 months to live and that was a year ago. He didn't have time for slow shipped orders! Very few of his days were pain-free, and those days were becoming fewer. I think God had a hand in us meeting this wonderful man at that time because suddenly I felt so lucky that I just had IC!

Keep searching for a treatment that helps. Most of us do find our way to better days, but sometimes that takes a while.

Oh, and yes, my IC is worse when it's cold! My theory is when I step out that door into that cold air I tense up my abdominal muscles which in turn irritates my bladder. I am SO tired of winter! Another cold front is sneaking towards me as I type this. Come ON Summer!

Vicki