The Chronically Ill support Group

[Christine]

Rootskate----->

In reading your post, I can feel how scared you are. You've gotten great advice here and I hope your mom beats this. Yes, it sounds like she is a strong person and that will work in her favor. I also agree that knowledge is power. Find some on-line support groups for the kind of cancer your mother has. Find out what doctors they see, who is the best, and make sure your mom's doctor is following the best protocols. Having some control will make you all feel better.

 

[luvwinnie]

Let's lighten the mood a bit. I've decided there are some definite perks to having a chronic illness.

Nobody expects your house to be clean anymore
Dh does all the laundry and dishes now
I don't have to "fake a headache" anymore
I can go to the store looking like heck and everybody thinks it's great that I'm out and about
Two words: Handicapped parking!!!
If I want a milkshake for dinner Dh is just thrilled I'm eating anything at all
"I just didn't feel up to it" is considered a legitimate excuse
I get to live in my jammies

These are great!

 

[Marseeya]

For those of you who are like me and the "low man on the totem pole," do you ever find that people in your life don't take your ailments seriously? I mean, I don't want people waiting on me hand and foot, but a little sympathy once in a while would do wonders for my mental state. As far as my DH goes, since it's not a visible ailment, then he has a hard time realizing how bad I truly feel most days. He gets mad at me for popping Motrin like it's candy, but it's the only thing keeping me moving sometimes. He has no concept of the kind of pain I feel on a daily basis. I don't whine or complain much either.

 

[Shugardrawers]

Rootskate--I understand your mother's fear of chemo. I was terrified too. Quite frankly, going bald and being naseaus all the time really didn't appeal to me. It's no picnic. And it's a very personal decision. Fear should not be one of the factors she takes into account though. Thousands of us do it every day and come back to live perfectly normal long lives. Unfortunately, it doesn't work for everyone. If she's otherwise quite healthy she *should* do ok tolerating it, though of course her mileage may vary.

As for survival rates etc, they are guidelines and only that. I have peritoneal cancer. Depending on who you ask the survival rate is anywhere from 0% (yes that's ZERO) to 40% with a 24 month life expectancy. I was diagnosed in 2002, had surgery and chemo and went into remission. It came back a year ago. I did the chemo thing again and now I'm testing a new drug. The point is, I'm defying ALL the odds. It may or may not make a difference in the end but I can say I did everything possible and I'm good with that now. Your mom needs to talk with someone who's actually gone through chemo to really understand it. That may help ease her fear and help her decide what she wants to do. Good luck to you all. We are here for you.

 

[kydisneyfans]

I was also advised to avoid the ibuprofin, but it works so much better for me than tylenol that I have decided to take my chances. I do try to be sure to keep an eye on the doses because I know too much can cause intestinal bleeding, but I haven't really had any issues. Even my GI doctor said "moderation is the watchword."

This has to be one of the most annoyingly conditions to deal with, don't you think? And there are certain foods I miss eating so much that sometimes I'll just go ahead and eat them even though I know I'm going to pay for it within an hour or two. Salad is the big one...during the summer months I can't stay away from it and then I always end up paying homage to the porcelain god.

Just curioius - what's your wife trying for her endo? Has she tried Lupron treatments at all? My doctor suggested it for me but I haven't made up my mind about it yet.

Very annoying condition to live with-the problem is that you just never know when it will hit. Salad has put me in the hospital twice--it won't happen again. My problem is that the "healthy" things I should eat for overall health are the things that flare the Crohn's up.

My wife has not tried any treatments other than the yearly clean out and hope surgeries. She called yesterday half in shock as she was at the doctor and her pregnancy test turned out positive-they even sent her to the hospital for blood tests to confirm. The doc called a half hour later and the office had mixed up her test with someone else's-she is not pregnant. What a cruel mistake for someone who has been trying for 6 years for another child.

 

[DisneyMim]

Marseeya I hear ya. Just yesterday I was visiting my mother, a HUGE trip for me as anyone with fibromyalgia can understand, and she didn't want to hear me at all talk about the bad night I had just had. I could barely keep my eyes open. God Bless her, she has had cancer and a lot of other problems, but I've always listened to her and tried to be understanding. I got NO understanding at all. It really hurt. My husband and kids are wonderful, but sometimes too I think they just get sick of hearing me. I just try and do what I can and as others have said try to keep a sense of humor about it. I am really trying to learn to not care what others think or say and just do what I have to and need to for ME. It is hard though.

I want to say to everyone here to have a nice week-end, take time for yourselves, hope you can be as pain-free as possible!

 

[Shugardrawers]

I wish I had words of wisdom for you who's illnesses are more hidden. Now that I have some hair again and am beginning to look a tad more healthy I get this too. I don't think it's so much that anyone is sick of hearing about it but that they are in denial because they can't see it. A family meeting with the doc may be in order to help them understand your disease better.

 

[luvwinnie]

Very annoying condition to live with-the problem is that you just never know when it will hit. Salad has put me in the hospital twice--it won't happen again. My problem is that the "healthy" things I should eat for overall health are the things that flare the Crohn's up.

My wife has not tried any treatments other than the yearly clean out and hope surgeries. She called yesterday half in shock as she was at the doctor and her pregnancy test turned out positive-they even sent her to the hospital for blood tests to confirm. The doc called a half hour later and the office had mixed up her test with someone else's-she is not pregnant. What a cruel mistake for someone who has been trying for 6 years for another child.

I just want to say to anyone with endo that I did Lupron and it was HORRIBLE for me. The side effects were terrible and now there is a grassroots organization aimed at trying to sue over ailments they blame on Lupron.

 

[luvwinnie]

For those of you who are like me and the "low man on the totem pole," do you ever find that people in your life don't take your ailments seriously? I mean, I don't want people waiting on me hand and foot, but a little sympathy once in a while would do wonders for my mental state. As far as my DH goes, since it's not a visible ailment, then he has a hard time realizing how bad I truly feel most days. He gets mad at me for popping Motrin like it's candy, but it's the only thing keeping me moving sometimes. He has no concept of the kind of pain I feel on a daily basis. I don't whine or complain much either.

YES! For a long time I think DH was just in denial. I took as him not caring, but he said he was scared. Men want to FIX things and he couldn't FIX this. Sometimes I feel GUILTY because I can't do everything I want to or that my family wants to...and the house isn't as clean as it was...but OH WELL. I know deep down it's not my fault.

 

[Shugardrawers]

YES! For a long time I think DH was just in denial. I took as him not caring, but he said he was scared. Men want to FIX things and he couldn't FIX this. Sometimes I feel GUILTY because I can't do everything I want to or that my family wants to...and the house isn't as clean as it was...but OH WELL. I know deep down it's not my fault.

Oh honey, I'm right there with you. Dh is in complete denial over the whole thing and tries to just ignore it. You're right, men are fixers and when they can't they don't know how to handle it. Our house is a pig sty, I don't cook much anymore, he does all the laundry and dishes and we are rarely intimate anymore. I feel so terribly guilty I really want to be a good wife to him and to me that means holding up my end at home. He's going to work all day then coming home tired and cooking, cleaning and tending to me. I hate it. I feel like a lousy excuse for a wife lately. If I do a couple loads of laundry, start the dishwasher and throw in a frozen pizza for dinner it's a banner day. The hardest part of this for me has been having to pass off all the things I took great pride in doing before.

 

[susan514]

I just want to say, reading everything here, all of your courage in facing your diseases is helping me realize that what I have happening to me is not so bad and that I need to face it with the same courage you all do.

I have been sick for about 7 months now. I got the shingles in July, on my neck. I had them through December, needless to say I was having headaches from ****. I was having what I called "lost" days, where the pain was so horrible, I wanted to shoot myself.

Then, as I was just starting to heal, I got a cold, which developed into Bronchitis. At the same time, I fell at work, hurt my back, and am now on medical leave doing PT. But, the real trouble has been the breathing. The doctor put me on antibiodics, then cortisone and inhalers. I have been to the ER twice and nobody can figure out the breathing. I have a good pulse-ox and my heart is fine. They say I don't have asthma. So, wish me luck because I see a pulminoligist this afternoon and hope he can help me. Some days, the breathing is so-so and some days just horrible.

I am very concerned as to what is happening to me. It seems to be piling on and I have no desire to do anything but be at home.

But, after hearing what others are fighting, it makes me realize how lucky I am. My thoughts are with you all.

 

[luvwinnie]

Oh honey, I'm right there with you. Dh is in complete denial over the whole thing and tries to just ignore it. You're right, men are fixers and when they can't they don't know how to handle it. Our house is a pig sty, I don't cook much anymore, he does all the laundry and dishes and we are rarely intimate anymore. I feel so terribly guilty I really want to be a good wife to him and to me that means holding up my end at home. He's going to work all day then coming home tired and cooking, cleaning and tending to me. I hate it. I feel like a lousy excuse for a wife lately. If I do a couple loads of laundry, start the dishwasher and throw in a frozen pizza for dinner it's a banner day. The hardest part of this for me has been having to pass off all the things I took great pride in doing before.

 

[luvwinnie]

I just want to say, reading everything here, all of your courage in facing your diseases is helping me realize that what I have happening to me is not so bad and that I need to face it with the same courage you all do.

I have been sick for about 7 months now. I got the shingles in July, on my neck. I had them through December, needless to say I was having headaches from ****. I was having what I called "lost" days, where the pain was so horrible, I wanted to shoot myself.

Then, as I was just starting to heal, I got a cold, which developed into Bronchitis. At the same time, I fell at work, hurt my back, and am now on medical leave doing PT. But, the real trouble has been the breathing. The doctor put me on antibiodics, then cortisone and inhalers. I have been to the ER twice and nobody can figure out the breathing. I have a good pulse-ox and my heart is fine. They say I don't have asthma. So, wish me luck because I see a pulminoligist this afternoon and hope he can help me. Some days, the breathing is so-so and some days just horrible.

I am very concerned as to what is happening to me. It seems to be piling on and I have no desire to do anything but be at home.

But, after hearing what others are fighting, it makes me realize how lucky I am. My thoughts are with you all.

Have they done a CAT Scan of your lungs? Let us know what pulm. says! Good luck!

 

[JennyMominRI]

I wish I had words of wisdom for you who's illnesses are more hidden. Now that I have some hair again and am beginning to look a tad more healthy I get this too. I don't think it's so much that anyone is sick of hearing about it but that they are in denial because they can't see it. A family meeting with the doc may be in order to help them understand your disease better.

I knw yu guys have seen the pic of me, Can see the pic of me in my sig.. I often get mistakes for a teenager. One thing I really don't look,is sick..People forget. People in my own house forget..When I've had to show my Military ID in some stores I've had people look at them and say,wow,You're so lucky to be retired so young ..My elderly mother even forgets.She will call and and give me this lng laundry lists of things wrong with her(none serious).One time she atually said "You have no idea what it's like to worry about your health all the time" And a second later there was dead silence when she realized what she said.

 

[chell]

Marseeya it seems to me like I run into that often. Thankfully some of my family is pretty great about it though.

kydisneyfans so sorry that you and your wife had to go through that. Goodness I can't even begin to imagine all of the feelings the two of you must have gone through in such a short time.

 

[ILUVMYBRIT]

Wow there sure are a bunch of us with a range of ailments. Well Im 34 and I have to say most days I feel closer to 60. I think I have had problems with something my whole life. I was diagnosed and treated for scoliosis as a teen. I've had psoriasis since I was a child, and now have been suffering with RA for 2 years. Its not horrible most of the time, but on the days its bad no one seems to understand because its not something really visable at this point.

I have been under treatment for anxiety and depression for about 6 years and thought I was doing well...that is until last week when I had something major happen in my life and I attempted suicide and ended up locked up in the pyschiatric ward for 4 days. Luckily I realised what I had done was stupid and that no matter how bad I may feel..many people are far worse than I and I need to be greatful for everyday God has given me.

to you all.

 

[Shugardrawers]

Here's an idea for those of you who are having a hard time communicating with your spouse/so. We got a notebook and every couple of days I'll write a page or 2 about how I'm feeling physically, emotionally, etc. I leave it on the kitchen counter and Dh reads it in the early morning before going to work while I'm still asleep. He writes back the things he has a hard time saying out loud. We don't talk about what's in the book except for the time I said I thought he would leave me because I've been so sick. He felt he needed to make it crystal clear that he was in it for the long haul, however long it would be. It's worked very well for us.

 

[oybolshoi]

Luvwinne,

would you mind sharing your experience with me - you can always PM me if you don't want to get into the details here. My doctor is strongly urging that I go with a 6-month Lupron treatment and for now I've just decided to use birth control instead and see what that does. I've never been crazy about the idea of using hormone therapy and your comment has me a bit nervous. I realize that not all of us will have the same experience / reaction to a drug, but I'm very curious because all the literature I have makes it sound as though Lupron is relatively side-effect free.

Thanks in advance for any input you'd like to provide.

I just want to say to anyone with endo that I did Lupron and it was HORRIBLE for me. The side effects were terrible and now there is a grassroots organization aimed at trying to sue over ailments they blame on Lupron.

 

[oybolshoi]

I think that's a lovely idea.

Here's an idea for those of you who are having a hard time communicating with your spouse/so. We got a notebook and every couple of days I'll write a page or 2 about how I'm feeling physically, emotionally, etc. I leave it on the kitchen counter and Dh reads it in the early morning before going to work while I'm still asleep. He writes back the things he has a hard time saying out loud. We don't talk about what's in the book except for the time I said I thought he would leave me because I've been so sick. He felt he needed to make it crystal clear that he was in it for the long haul, however long it would be. It's worked very well for us.

 

[luvwinnie]

Luvwinne,

would you mind sharing your experience with me - you can always PM me if you don't want to get into the details here. My doctor is strongly urging that I go with a 6-month Lupron treatment and for now I've just decided to use birth control instead and see what that does. I've never been crazy about the idea of using hormone therapy and your comment has me a bit nervous. I realize that not all of us will have the same experience / reaction to a drug, but I'm very curious because all the literature I have makes it sound as though Lupron is relatively side-effect free.

Thanks in advance for any input you'd like to provide.

I'll share it here so that anyone considering Lupron will see it. Of course, not everyone has the same effects, but mine were:
HORRIBLE HORRENDOUS hot flashes (remember LUpron puts you into pseudo-menopause
VERY VERY dry eyes, I"d wake up feeling like someone rubbed them with sandpaper
MOOD SWINGS that I didn't even know existed. I've always been a very happy, laid back person. These mood swings made me feel HOMICIDAL. I'd be filled with RAGE for no reason. Even my own mom said I was a *itch on that drug!!
Short-term memory loss
Severe fatigue
I LOST weight also and I was already very thin