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Primary Sclerosing Cholangitis (PSC) - Online Support Group

I need to vent this

I really don't know who to talk to about this other than you guys on this site. So, sorry if I seem a bit angry or anything. I just needed to get this out.

About a month ago, my husband and I got our yearly phone call about life insurance. (His dad goes through this company and wanted us to do the same.) So they make an appointment for us to come to our home and get all of our information, like they did last year. The day comes and they come over, surprisingly a bit late so I had to leave and go to work. They took my info/spit sample etc. really quick and I left. My husband did talk to them about my fun liver problems and of course they felt bad. He sent me a text when they left and said everything went fine. Good. So a couple of days later, he gets a call on his phone and gives me this strange look. After he gets done with asking what day I had off and what time worked for him, he hangs up and tells me that it was the insurance company again. This time they want to come over and talk about terminal life insurance. I was completely shocked. I just said to him NO! I started to cry and said I will never talk to them about that. I told him that he could talk to them but I would not. I went on to explain that I am accepting this whole thing with my liver and I am trying to stay as positive about it as I can. This would just turn me around and make me feel like I am dead. He did feel bad after I explained all of it him. I just said, with my liver maybe I should get a plot as well? I mean if I am going to talk about stupid terminal life insurance I may as well get everything now just to have it done. Give up and just not do anything but sit around and feel sorry for myself. Well, he did not like that. (I wonder why.....) When the night before came, they called again and he cancelled. I felt a little better. I did apologize to him and he did the same. Said he was not thinking.

I mean, I am really trying to stay positive about all of this. I understand that this company is just trying to make money, but please. I was only diagnosed for 6 months and already I feel like I was thrown to the hounds.

But thank you for reading this. I feel a lot better in telling someone about this. It really bothers me that people/companies do not think.

Hi Katsy,

I’ve got a couple of thoughts for you. First, who cares what company your Dad does his life insurance through, you and your husband should do what’s best for you. Very shortly after my diagnosis I called Zander Insurance and they said they’d be able to write me a policy one year after diagnosis so long as I was stable. It’s certainly worth a phone call to them to see what their opinion is.

Second, I can very much relate to feeling out of control and like this is something happening to me that I have no control over. I would suggest trying to take more control over what your situation is. Check out “The Paleo Solution” thread I started a few days back, lots of lively discussion on there about possible dietary and lifestyle solutions to the issues of autoimmune conditions. I’ll be frank, there’s a lot of food choices that that plan takes off the table, but at the same time if it works isn’t that worth keeping one’s liver and staying healthy?

I don’t claim to be a health guru, but that is the direction I’m leaning. I’m very blessed to be asymptomatic at this time, and I plan on staying that way. Maybe it’ll work, maybe it won’t. We’ll see. In any event, why not try that approach for 3-6 months and see how you feel? There’s lot of resources out there to help people walk through this stuff.

http://stalkerville.net/diet/autoimmune/

Cajun-
I have changed my diet around a lot. I don't go into all of the "fad" diets. I do read about some of them but I won't totally dive right in head first. I tend to try to eat stuff and see what the reaction is. I don't drink anymore and I tend to eat very little processed foods. (although everything is processed in one way or form.) Everyone is different so going to one diet with or without your doctor involved could be bad for you.

Stephen-
Feeling better soon may be an understatement. lol I am trying, but I just take day by day. I figured this was my best bet at nailing this to the wall. My doctors really won't treat me with a lot until I get worse. (UGH! lol)

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While my paternal grandfather is Cajun through and through, my other three grandparents are very English, one with a smattering of German.

If by “fad” diets you mean this one 400 page book next to me with 1,200 scientific papers cited in its bibliography, well I guess that’s the one. It’s premise is actually pretty simple: heal the gut, improve nutrient density, and remove known autoimmune triggers. The author herself has a pretty powerful testimony.

http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

Now please understand, I’m not one of those tin foil hat types that has unlimited suspicion of the medical community. My gastroenterologist is a genuinely nice guy who I truly believe to have my best interests at heart. But I also believe his training is to take a pharmacological approach to what may be a problem of my environment, that is, the Standard American Diet of the fast food drive through and the freezer section. When I asked him if there was anything I could do regarding diet and lifestyle to manage this thing, and he literally had no answer for me, I knew there was something lacking there. There are lots of other people out there who have actually done and compiled the research to fill in that hole in our knowledge of the root causes of chronic illness. Not kooks, not wackos, but people with bonafide scientific credentials that are bring some serious intellectual horsepower to this issue.

One last thought and I’ll let it go… You mentioned taking a bit of a more conservative approach to diet changes. If A, B, and C are all irritants to your gut, immune system, etc, and you only remove one at a time, you’ll never see any drastic improvement because the other two will be working there in the background. Just a thought…

Other books worth checking out would be “Practical Paleo,” and “Wheat Belly.” The latter is truly eye opening.

CJ-

I am not saying that Paleo is a bad thing. I am just using my own discretion with diets. I hear people who claim that going gluten free is the way to go, but seriously, have you checked out the prices of this stuff? No regular average joe can actually afford going 100% gluten free on $5-$7 an hour. And what about the rest of the family? If there is a family of 4, are you going to change around the whole family for 1 person who says they "need" to be on this diet or buy separate food for just this person and make continuous 2 separate meals every night for supper. I am not saying anything is "bad".

I am seeing things like the diets on two different levels. Do I just do this diet alone and let my husband eat what ever he wants or make him eat this along with me. I don't see it as fair. I mean, it is not like I am sitting at McDonald's every day buying meals left and right, or any other fast food place. If we do go (which is very rare) I choose carefully and not over eat. I am not going to deny myself of things I once loved to eat just because of what a book says or what people say. I am moderating things. I will eat a hot dog and some salad someone made but I won't pig out. Moderation.

I am not going to sit and argue about more about diets or anything, I just wanted to vent about what the insurance company had done. I just need to get it out to people. I don't have that big of a support group here where I am other than my family. So please, I don't need a lecture on here about your views.

Katsy, I am glad you posted about the terminal life insurance experience. What an awful feeling that must have been. Like watching someone start drafting your obituary.

We all have an expiration date, of course, but patient with chronic illnesses have this fact announced to them in curious and very insensitive ways. And when someone is trying to somehow profit at the same time, it is all the more irritating.

About paleo, it's wonderful if some members have seen improvement from it, but in the end we all have different circumstances, and we all need to do what works for us as individuals. I'm sure running a few miles a day would improve my own health, and yet somehow I haven't adopted that habit. I'm sure you are doing the best you can, and I hope you keep posting here. I wish you the best!

Ha! I think if we were all limited to that 8 foot section of one side of the grocery store aisle that said “Gluten Free” we’d all starve. Naw, way better options than that, and cheaper as well, but I’ll get off that soapbox for now because it’s clear I’m not being sensitive.

I certainly can’t speak for everyone here, but I can certainly relate to the financial challenges. I’m still single, and I can definitely admit having spent time back at my parent’s house from time to time. It’s humbling to be sure.

All the best…

CJ

Emotions aside, term NOT TERMINAL) life insurance is probably a good thing for anyone. It used to be that having an illness like liver disease would disqualify a person from life insurance. They may have been doing you and your husband a favor, though, granted, it may be hard to see it that way.

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Having PSC is very stressful. It doesn't take much to upset the apple cart. You might do well to call the insurance agent back and explain how insensitive s/he was.

One time, I had a change in pharmacists. The new guy put my pills in huge bottles instead of several small bottles. This really depressed me for some reason. It seemed so undignified. The pharmacist could never have anticipated my reaction, and I never told him.

However, your agent could have anticipated a negative response and should be informed.

Hey Stephen!
I am ok. Just run down feeling. Waiting for warm weather! rofl
How are you doing?