Community Chat

[NoelSeven]

On 4/5/2014 Deb1010again said:

On 4/5/2014 Jules5280 said:

On 4/4/2014 Jannabelle said:

On 4/4/2014 cody said:

Noel, you were absolutely right in your comments on the other thread. Dwelling and stewing are counterproductive when you really have serious health problems. And I know that you speak from experience.

We all have those issues with ourselves, our spouse, our children, our parents, our sisters and brothers and others that we love. Obsessing about it does no good for anyone. I am not saying that we all don't have a bad day when we just let loose. But when those thoughts are the only things in our lives...well...it is time for help. JMO.

I agree with you 100% Cody, I know people like that, where their health is their life, their lives revolve around doctors, hospitals, tests, etc......I think in one sense it is their purpose, the reason they get up every day, and they have to decide when enough is enough and get other interests.

I come here just to share my thoughts, for whatever value they might contain, but my intent is certainly not to insult or cause argument. I honestly have not read about Scottie's daughter, or September's husband, so in that regard, all I can do is send my genuine and heartfelt prayers for comfort and healing. Noel, I only just read about your hours of tests, and hope you are doing okay. You shall be in my prayers as well, and you have been so kind and supportive of my situation with my dad.

That said... health is life, at least quality of life. It is something most take for granted (young and old and all between) until it is taken from us. It is something that all the money in the world can sometimes not purchase. So I think it is both very dismissive and insulting to say a person that has a life consumed with doctors, and hospitals, and tests, needs to find other interests. In fact, I think it is a ridiculous statement, perhaps made by someone who has never walked in those shoes. My father has plenty of interests, many he pursued before he got so sick and went into hospital, and many he would still love to pursue IF he were well enough to focus on them. His reason to get up every day right now is because people get him up, give him medication, and don't really care if he gets better or not. I cannot tell you how many hours/days/months even that I have spent in doctor's offices, hospitals and care facility rooms in the last year.... I have observed so many sick people, and their families, and the different dynamics. I have yet to encounter ONE PERSON who desired to be sick and be in that situation, and I think many would sell or give all that they had in order to be well once again. Health is a commodity we don't get to bargain with, when we have it we usually take it for granted, and when we don't have it, we want it back.

So yes, when someone is sick and in hospital, it is their purpose....their purpose to get better. Their "other interests" are not something they have time for... their INTEREST is in getting well and recovering their life, so they can go back to those "other interests".

There are people who are Hypochondriacs, for sure. However, there is a BIG difference between complaining about aches & pains or ailments, than people whose lives "revolve around doctors, hospitals, tests, etc." I doubt those people that are in and out of hospital and doctor appointments are doing it for the attention or lack of other interests in their life!

Perfectly said. I wasn't part of whatever thread this is a continuation of, but it seems to me the topic was people who are very sick developing outside interests. I fit into the sickly category, but what I've found is things I used to enjoy, I don't enjoy as much anymore. My life is colored by not feeling well and a general feeling of malaise. It's hard to develop interests when you're constantly hurting and otherwise not feeling well. It is your entire life.

We can't let it be our entire life, and I know you do have other interests, Deb.

There is no break from lupus. It's every day, it's a lot of pain and constant dealing with what it brings. Any day we may think we're OK, but the next hour can bring an ambulance.

You can't spend your life living in dread and not letting anything else in. You can't spend every moment talking about your problems to other people, and nothing but your problems. It will only make it worse.

[cody2]

Jules, of course you are right, for your situation. Our discussion didn't deal with the condition your sweet father is in.

[NoelSeven]

On 4/5/2014 cody said:

Jules, of course you are right, for your situation. Our discussion didn't deal with the condition your sweet father is in.

Yes, that's very different.

[scotttie]

Noel, I am so glad that I checked in here before I leave for the weekend. Thank you so much for your kind words.

Yes, my girl is doing very well now. Not that she doesn't still have issues but her quality of life is good and she is very happy and a joy to all who know her!

The thing that I am sure is confusing to many people is the amount of illness she has had. I will share for the benefit of those who don't know.

She was born emergency cesaerean (there is a thread on wellness about fifth disease which is one of the things that was thought to be the cause of her trouble). She never produced her own red blood cells and was transplanted with her sisters perfect match cord blood at age 5. Unfortunately the original ailment may or may not have caused a scarring in her brain (lack of oxygen or minor stroke?)we don't know. Anyway this caused seizure disorder which the transplant drugs possibly made worse. Then at around first grade? she went on the ketogenic diet for her seizures and had a miraculous outcome. She now only needs one med for that and is no longer on the diet thank goodness!. Life has been calm and good

I have seen the hand of God so often in her life. Guess I should write a book LOL! When I mention her situation often it is in context of sharing our experience to be of help to others whether its dealing with doctors or meds or a specific situation. She is really really doing well now!

edit for typo

[scotttie]

And now, Noel, I do have a small understanding of what you must go through on a day to day basis. My heart goes out to you on the rare occasions you mention it. The fact that WHAM! as you said you could end up in the hospital at any time or lose some quality of life. The pain I have heard is really awful. Many of us worry about getting cancer but indeed the autoimmune diseases can be just as terrible if not worse. (My folks both died from cancer so I know what that's like).

I know that you were trying to help on the other thread by saying what you did and you were exactly right! There are days we need to "wallow" in our misery but then if we don't pick ourselves up and find something else to TRY at least to focus on then we are basically out of hope. I taught this to my daughter and I believe that is why she is a happy person today in spite of the residual issues. I taught her to cry when she needs to and "punch a pillow" or something but then to remember what she does have. I read her stories about Helen Keller, and Wilma Rudolph and Louis Braille and others who overcame tremendous obstacles in their lives to make life better for other people. THat is what you were trying to explain I think.

ANd now lastly, My dear friend is suffering with terrible recurrent cancer. She has lived past what time they gave her. Her doctor says what we all know...that her attitude has kept her alive. SHe belongs to a support group that takes fun trips and do amazing things and she has this to look forward to. She's one of my heroes. Never lets it get her down.

Thank you again for this thread.

September I hope your husbands healing goes well.

ETA: I KNOW THAT NOT ALL CANCER PATIENTS HAVE THIS ABILITY TO CARRY ON ...MY MOM DIDN'T. So my point was more to what Noel was saying yesterday...if you can ...do something to take your mind off of it!

[NoelSeven]

On 4/5/2014 beammeupscottie said:

Noel, I am so glad that I checked in here before I leave for the weekend. Thank you so much for your kind words.

Yes, my girl is doing very well now. Not that she doesn't still have issues but her quality of life is good and she is very happy and a joy to all who know her!

The thing that I am sure is confusing to many people is the amount of illness she has had. I will share for the benefit of those who don't know.

She was born emergency cesaerean (there is a thread on wellness about fifth disease which is one of the things that was thought to be the cause of her trouble). She never produced her own red blood cells and was transplanted with her sisters perfect match cord blood at age 5. Unfortunately the original ailment may or may not have caused a scarring in her brain (lack of oxygen or minor stroke?)we don't know. Anyway this caused seizure disorder which the transplant drugs possibly made worse. Then at around first grade? she went on the ketogenic diet for her seizures and had a miraculous outcome. She now only needs one med for that and is no longer on the diet thank goodness!. Life has been calm and good

I have seen the hand of God so often in her life. Guess I should write a book LOL! When I mention her situation often it is in context of sharing our experience to be of help to others whether its dealing with doctors or meds or a specific situation. She is really really doing well now!

edit for typo

Scottie, what an amazing story! I had no idea your family had been through so much, even though I did know you had an amazing daughter who had been through a very difficult ordeal. I'm so glad it all came together and her life is much easier now. As her mother, the anxiety had to have taken a toll on you. My prayers for you all and for the happiness you all deserve.

[NoelSeven]

On 4/5/2014 beammeupscottie said:

And now, Noel, I do have a small understanding of what you must go through on a day to day basis. My heart goes out to you on the rare occasions you mention it. The fact that WHAM! as you said you could end up in the hospital at any time or lose some quality of life. The pain I have heard is really awful. Many of us worry about getting cancer but indeed the autoimmune diseases can be just as terrible if not worse. (My folks both died from cancer so I know what that's like).

I know that you were trying to help on the other thread by saying what you did and you were exactly right! There are days we need to "wallow" in our misery but then if we don't pick ourselves up and find something else to TRY at least to focus on then we are basically out of hope. I taught this to my daughter and I believe that is why she is a happy person today in spite of the residual issues. I taught her to cry when she needs to and "punch a pillow" or something but then to remember what she does have. I read her stories about Helen Keller, and Wilma Rudolph and Louis Braille and others who overcame tremendous obstacles in their lives to make life better for other people. THat is what you were trying to explain I think.

ANd now lastly, My dear friend is suffering with terrible recurrent cancer. She has lived past what time they gave her. Her doctor says what we all know...that her attitude has kept her alive. SHe belongs to a support group that takes fun trips and do amazing things and she has this to look forward to. She's one of my heroes. Never lets it get her down.

Thank you again for this thread.

September I hope your husbands healing goes well.

ETA: I KNOW THAT NOT ALL CANCER PATIENTS HAVE THIS ABILITY TO CARRY ON ...MY MOM DIDN'T. So my point was more to what Noel was saying yesterday...if you can ...do something to take your mind off of it!

Wise words, scottie I'm sorry to hear about your friend. Cancer is such a horror, it's pretty much in a category of its own. We have lost three people we loved to pancreatic cancer, one was very young.

I hope your friend makes it, I really do. She's lucky to have you, imo support from family and friends makes the real difference.

And laughter, it does come, even when it's black humor. I am able to make jokes about many things I've dealt with. When I only had vision in one eye, I had to wear an eye patch almost 24/7, and believe me, they are not comfortable. I could make a mint designing a better one, but anyway... I came back on Viewpoints with only one eye, and made a sig line that said something like, "No, I'm not a pirate, I'm beta-testing Google patch." A take-off on Google glass where people can see computer-like images.

It keeps ya goin'

[scotttie]

On 4/5/2014 NoelSeven said:

On 4/5/2014 beammeupscottie said:

And now, Noel, I do have a small understanding of what you must go through on a day to day basis. My heart goes out to you on the rare occasions you mention it. The fact that WHAM! as you said you could end up in the hospital at any time or lose some quality of life. The pain I have heard is really awful. Many of us worry about getting cancer but indeed the autoimmune diseases can be just as terrible if not worse. (My folks both died from cancer so I know what that's like).

I know that you were trying to help on the other thread by saying what you did and you were exactly right! There are days we need to "wallow" in our misery but then if we don't pick ourselves up and find something else to TRY at least to focus on then we are basically out of hope. I taught this to my daughter and I believe that is why she is a happy person today in spite of the residual issues. I taught her to cry when she needs to and "punch a pillow" or something but then to remember what she does have. I read her stories about Helen Keller, and Wilma Rudolph and Louis Braille and others who overcame tremendous obstacles in their lives to make life better for other people. THat is what you were trying to explain I think.

ANd now lastly, My dear friend is suffering with terrible recurrent cancer. She has lived past what time they gave her. Her doctor says what we all know...that her attitude has kept her alive. SHe belongs to a support group that takes fun trips and do amazing things and she has this to look forward to. She's one of my heroes. Never lets it get her down.

Thank you again for this thread.

September I hope your husbands healing goes well.

ETA: I KNOW THAT NOT ALL CANCER PATIENTS HAVE THIS ABILITY TO CARRY ON ...MY MOM DIDN'T. So my point was more to what Noel was saying yesterday...if you can ...do something to take your mind off of it!

Wise words, scottie I'm sorry to hear about your friend. Cancer is such a horror, it's pretty much in a category of its own. We have lost three people we loved to pancreatic cancer, one was very young.

I hope your friend makes it, I really do. She's lucky to have you, imo support from family and friends makes the real difference.

And laughter, it does come, even when it's black humor. I am able to make jokes about many things I've dealt with. When I only had vision in one eye, I had to wear an eye patch almost 24/7, and believe me, they are not comfortable. I could make a mint designing a better one, but anyway... I came back on Viewpoints with only one eye, and made a sig line that said something like, "No, I'm not a pirate, I'm beta-testing Google patch." A take-off on Google glass where people can see computer-like images.

It keeps ya goin'

Oh yes! I'm with you. Rather laugh about stuff than cry when I can!

((((hugs))))

[Preds]

Ladies ... big, big, big, cyber hugs to you and yours. Yes, having a positive outlook, a sense of humor, a strong belief, support from family and friends and awesome courage can be so helpful and necessary when dealing with what life throws at you. I pray that you all continue to have the tools to keep it working .... keep it growing.... and keep it going.

[NoelSeven]

On 4/5/2014 Predsfan said:

Ladies ... big, big, big, cyber hugs to you and yours. Yes, having a positive outlook, a sense of humor, a strong belief, support from family and friends and awesome courage can be so helpful and necessary when dealing with what life throws at you. I pray that you all continue to have the tools to keep it working .... keep it growing.... and keep it going.

Thank you, that means a lot coming from you, Predsfan