The Difference between living with a Chronic illness vs. terminal illness

[Teri]

This year has not been kind to me medically at all. All of the support I use to get from my husband is GONE so I'm feeling like I'm floating on a raft calling for "wilson"......

My sister, for those who don't know, was dx'd with stage 4 melanoma in November. We, at 51 and 52 are actually building a relationship and I LOVE IT!!!! We've gone all these years hating each other and now we are finding that we CAN sit for hours and talk to each other.

Today the topic was living with a chronic illness vs a terminal illness. And it got HOT. She's giving me all of her excuses as to why she might someday take her life (she doesn't want to live in pain) and I'm telling her bull****.....if I'm makin' it, SO CAN YOU!!!!!!! Yes, if at the end of her cancer she is not capable of doing anything for herself and there is no quality of life left, fine, that's her choice. But, after a dx only 4 months ago we look FORWARD and we try everything there is to try. Because of IC I will beable to be very helpful to her. We talked about guilt....she is brand new at it and I'd give anything if she didn't have to go thru it but we all have and she will have to now too. I'm glad that I will beable to help her with that because when I needed it, there was no one to talk to....."it's ONLY a bladder infection" is what I was told. Naturally all of the friends that her and her husband have (they have been together for 38 years, the friends have already stopped dropping by and the phone doesn't ring non-stop anymore. I feel so good that FINALLY, she needs me and it feels good. NO, it doesn't feel good that she has this killer cancer....I would much rather have gone on hating each other so she could live than for this to happen.

When I came home and was telling my husband about our conversation regarding living for the rest of your life with a chronic illness or being told that you had a terminal illness and had 5 years left to live he was on her "side". He thinks being told you have 5 years left to live is worse than being told "unless there is a miracle, you will spend the rest of your life in horrific pain"
Now, I KNOW that it's been really hard on me the last few months and I know that my buttons are easily pushed right now BUT

I need YOUR imput.........

[auntiedeb]

{{{{{{{{{{{{Teri****************************
My family doesnt understand some of my friends don't understand either. I was in the er on friday night with a co-worker and friend April, I worked the full day in pain, found out I had another kidney infection and stone and uti. this other co-worker of mine and friend Shelby kept calling april and I did not want to talk toShelby. It is has to be all about Shelby.. I cant be there for her . She can't be there for me and that is ok. I have to make a decesion and I am just going to talk to Shelby at work and leave at a work relationship. My health is too imporant. I just don't feel well. Chronic pain makes us very tired, it makes me very tired. I am on your side. Hang in there. There is hope.

[jaime15]

Maybe people understand your sisters "side" more because cancer is a more discussed disease than ours??.. Even doctors don't understand the pain we are in on occasion or cronically. So why should others.

If I were near you I'd smack you for asking, of all people, your hubby's opinion. Hasn't he been a jerk enough lately. eek

Both diseases are bad enough in itself. But to me the cronic pain for life is more of a death sentence. What kind of life would that be when docs don't even give enough or any pain meds to get you thru the day let alone your life.

Hope this helps you somehow. If not, smack me. I like pain.....NOT! (Just trying to cheer you up) :D
Hugs Teri,
Jaime

[Teri]

jaime:D:D:D:D:D:D:D

[Emilin]

Cancer is not a terminal illness until it's been diagnosed as such. People can live with cancer for decades. Statistically speaking, being told that you have 5 years to live isn't a terminal diagnosis (ask an actuary).

Many people who have cancer, even at stage IV, would be incredibly offended to know that you're writing them off as terminally ill.

[jaime15]

I'm not offended that people who think IC as some terminal illness that they shouldn't be around that person, maybe they'll catch it. I try to educate them in the simplest form w/o wasting my time. They can like it or not. Hang out w/me or not. (Considering I'll spend most of my time in the Ladies' Room).

Teri, I don't think you offended your sister. If you did, well, there's something for ya'll to discuss.

Take Care,
Jaime

[Teri]

No, there has been NO offending on either my side or my sisters side. Infact, at 52 and 51 we are closer than we have ever been in out lives. We can actually talk on the phone for longer that 5 minutes without lying about why we have to hang up. (infact I'm going to have to get an ear piece for my phone cuz once she gets wound up, it could be hours and that just kills my ear;)) We can sit at each others tables and talk. I can lay in bed with her when she's scared (I think that's the part that I like the best)

Today was her first interferon treatment. It's going to be hard because I told her that I wasn't going to call her and bug her, she'd have to call me when she feels like it. I know what it's like to feel like you've been beat to death so I won't disturb her. What I will do is have a ball looking for cards with sick little jokes on them. As most of us have learned, without our sense of humor, we are completely naked........

Thanks again for all the support...
tons and tons of gentle and grateful hugs~

[auntiedeb]

Teri , hugs to you. You sound so good. You so postive. keep it up. Hang in there. There is hope. :)

[sad]

I know that this is going to sound horrible but you asked for opinions so here goes. banghead After being diagnosed with IC and discovering all the facts, I was found myself wishing it had been bladder cancer instead. At least with cancer, there would be generally two options. You will either (if caught early) have the cancer removed or you will die from it. I guess you can say I resented not being given that choice but instead having to live with this chronic pain for perhaps the rest of my life. Now three years later, I can't say I feel any different. I know some people might call me a brat or whatever but all I can think of are all of the losses I have suffered as a result of this illness. Three years ago, I was self sufficient with a well paying job and was living happily with my boyfriend. After being placed on medical leave from work, you might say that too much "togetherness" in our very small apartment at the time broke us apart. I can't even really blame him for leaving me but I get so incredibly depressed when I think of those "before" days.

[auntiedeb]

{{{{{{{[[[sad************************************] welcome to the board. I am so sorry for your pain and losses. there is hope with this ic and there is remisson. Hang in there and there is hope. We all have our good and bad days. Keep posting andlet us know how you are doing.

[sad]

banghead Thank you Debbie for your reply. And you are right; I need a place to vent. What I would really love is to go thru one day where I don't feel like my feelings of desparation & bitterness are going to come bubbling out of my ears. I am sooooooo tired of this. I feel like a damn prisoner in my own life. People say that I am fortunate in that my family is in the position to support me financially thru this but I don't see it that way. I hate depending on my parents for my financial needs and it has never the less put a strain on our relationship. I find myself thinking that it might actually have been easier if they couldn't help me because I would have less of a reason to fight this thing and stick around. The icon I chose to lead this post so totally expresses how I feel and will feel every day until some judge finally makes up his mind. When he does, I hope he doesn't base it much on the statements placed by "doctor" at my hearing. Although he did support my claim of having IC, he also made ridiculous statements like how unfortunate it was that the biopsy they perfomed on my bladder (pre diagnosis) did not indicate that I had IC! This guy obviously thought that you could diagnose IC thru a biopsy just as you would cancer. Where do they get these morons? You would think that someone in that position might actually do their homework and know the facts of what they are talking about.

[Teri]

Sad~the feeling of us not having cancer is quite normal I think because with cancer we do see something one way or the other. With this stinking disease we don't have that luxery. I know for myself I wished many many times that if I had to get ill I wish it would have been terminal instead of this......so never feel bad or apoligize for your feelings. They are your's and you deserve to vent them.

The losses are MANY but if you decide to join our IC family, I promise you at least you will get MANY new and wonderful family members~

[sanctuary]

Just an opinion but I have had IC for over 10+ yrs and before that we suspect I had it at least for 5 more before that. I have been living w/pain for so long that it drove me to therapy to handle chronic pain. I felt for so long that I didn't want to live it. I had to live with this agony, and for me it is agony. I have acute IC w/Hunners ulsers, bad kidneys from the way I was born, a spinal injury from being hit by a car while walking and a truck hit my car a year later. I know pain! The answer to living with the pain was to get adequate pain medication, not "just enough" but enough to make me have pain free days so I could get some desire to live. Once I was given the "correct" medication, I changed around totally. The answer is, if the pain can be PROPERLY managed then it's not so awful as to make me want to die, (literally) I no longer want to die, but when my patches don't come in the mail and the pain comes back, I instantly rememeber wanting to die again. I think chronic pain is equal to dying of cancer. They can leave this world eventually, while we have to remain in pain..it's a toss up who has it worse. Just some input in to an interesting subject. One is not "better" then the other, it's all the same hell, but your's CAN be managed w/the proper care and meds, hers can't, cause as you say "she's terminal" I hope she's not terminal, but if so, long after she's gone you'll still be suffering w/o the right pain meds. Do whatever you have to to get proper medication and your life will turn around. Then you can be there for her. sanctuary

[auntiedeb]

I feel that chronic pain makes us really tired and makes me sometimes miserable. Sad, you have a right to talk about your feelings and vent them. That is why we are here for. Ic is not easy to deal with and then all the other stuff on top of it too. Hang in there. There is hope.

[Kelli]

Teri, I am so sorry you and your sister had to become closer in this manner. Answering your question is hard. On one hand you have cancer, impending death none the less. You generally have an idea of how much longer you will survive, but then you will be in peace for eternity. Chronic pain is everlasting. We don't have any ideas as to how long it is that we will be this way. Some days I too wish I were dying from cancer than to have what I have. But then on the other hand, I am grateful it's not cancer. Even though I feel very bad at times, I still have the smiles on my childrens faces every morning to look at. When one of them come home from school with something they made and they are so proud of it that you are the only person in their world who relates to their joy. No one else can do that for them, and to be quite honest, I wouldn't want anyone else to. I wouldn't want some other woman kissing my sons knee if he fell off his bike, or wiping away tears from the eye of a child who has been heartbroken over a special toy that is lost. No matter how bad I feel somedays, and no matter how bad I wish the pain would end and I could either die, or go back to who I used to be, the fact is this is who I am. And my children love me for that. Even when I have to break a promise due to a flare. I don't like the fact that I am 26 and will have to spend the rest of my life the way I am.....but I just take it step by step and day by day, and I get though it.

Your sister will be in my prayers. Cancer is no way to die. It's absolutly horrifying and painful and wish that upon no one. I pray God takes her peacefully, and that he has given you two the opportunity to be close again.

Love,
Kelli

[Teri]

{{{{{Kellie**********thank U sooooooooo much for such a beautiful post kissing

I finally caved and let my almost 13 years old grandson (May 13th is his BIG day:D) stay with me for his easter break. We talked A LOT. There have been tons of 1/2 truths being told about so many things and I figure I don't have alot of time to waste so I just spuew it out of my mouth all at one time.

He was finally okay with my illness and my need to go to bed. He got use to eating Wendy's burgers with PaPa every night for dinner. I wouldn't keep him for more than a couple of days because I didn't want him to see me like this eek :rolleyes: He just wanted to spend time and be with me. He didn't care if my hair was combed or not of if I staying in pj's all day. Thank GOD that pressure is gone.

I am praying that now that my sister and I have finally bonded her and her husband will come to the lake with us this summer. Her husband use to be a fisherman (mine is addicted) but he had to quit cuz all of his friends smoke and he knew he's end up smoking again.....welp, my brother in law doesn't smoke so :cool: :cool: I'm looking for some bright days ahead........

Thank ALL of you so much. With each post from you I get a little stronger.......

[rags]

Sad,

I have been going through the same feelings also and do relate with you in so many ways. Prior to the IC I lived on my own with a great career and had a fiance. Once the symptoms began I slowly lost control of my life and had to move back home which I was out at 18 and back at 30 which is a big adjustment. Due to the pain I had to leave my career and my fiance could not hack it. He said he could not handle the limitations it put on our relationship. So now single at home and doing all the steps they say to get some control back. So my new job is to get up each day and go through the motions of life and watch the days pass by so quickly. But even throught this all it is so important to have positive thoughts no matter how few and far between and keep hope for remission and research. That in itself is a job but please try each day to find something good even if it is just for a small thing. Just remember the board is here for you and keep venting!! I am sending lots of hugs and smiles your way.
Tara

[auntiedeb]

Wow What beautiful posts and encouraging words :) Happy Mother's Day everyone.

[minnie_min99]

hi there,

I am so sorry that you and your sister had to become close in only a time like this but at least now, you can say that you have someone other than the significant other that understands; if your like me, only my husband understands and no one else. My parents know and try and support but they don't know anything about the probles of ic and dont try to know either so at least now you have someone on your end who can listen.

As for which one is worse, I think that both of them have their ups and downs because even thought she was given five years, she could live alot longer if she takes care of herself. It all depends on what she wants to do for herself and hopefully she doesnt loose hope and faith throughout it all.

All the best to both of you

[emilyrose197377]

(((((((((Sad))))))))))) welcome to the board. You are not alone we all feel that ways sometimes .

Take Care
Kim

[Melanie]

I'm sorry you and your sister are going thru this.

This book was very helpful to me:
Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life by Stacy Taylor, Robert Epstein

[jaime15]

This is a very old thread......sadly Teri lost her sister to cancer.
Teri doesn't get on the boards much anymore....but I'm sure if she does, she'll read your latest replies. :flower:

[ldgb4]

I know the feeling about family not understanding all to well all of my family look at me like it is my excuse to have to do anything and that I make it all up and that really hurts why would anyone want to make something this painful up and with the way that I am having trouble with drs being unwilling to give pain meds to me as if I am some drug addict of course I am going to complain I am in pain and there is nothing that I can do about it. I hope you all are feeling well and pray for me I go to the dr tomorrow and am in hopes he will do something.

Hugs to you all,
Lisa

[SrMaggie]

I have had those thoughts, also. I am feeling pretty good now, so it is not uppermost in my mind. I was at a family reunion over the weekend. A woman (cousin of some kind) told us that she had had breast cancer. Right away, my brother asked how long she had been cancer free. (His wife has had breast cancer and is over 5 years survivor, now). It seemed so easy to talk about breast cancer and so difficult to talk about IC. I could never bring up IC as a topic of conversation so easily. Our society has changed so much. 'Breast' used to be a word that elicited giggles from the young and blushes from those who were older. Now, it's just another word. Who knows when IC will be just another condition that is understood.
Maggie