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lornak
11-03-2010, 05:31 AM
that is what the DR told me at my last visit. I have damaged lungs, blood coming from my kidneys, my ADLs are very bad and my meds are not working. I have NO INSURANCE!!!

the question is.....do I tell my son what the Dr. said or do I wait till he graduates? I feel like if I tell him, it would be putting too much added pressure on him at this time. He is a senior and trying very hard to do his best to get into the college that he wants. this will surely take his mind off his schooling and put it on me. I want him to be happy and not to worry about me. I told my husband, and we are dealing with it but he wants me to tell my son also. I am not afraid of death, just afraid of the pain that comes first. I am also afraid of what will happen to my husband and my son after I go. is there anyway that I can make it seem not so bad to them? my husband wants me to make a list of things to do after I pass. I have been putting it off, but I think I will do it today.

please to all that read this....yell, scream, and vent if you want. I have--and I am done. please also add your thoughts.

BonusMom
11-03-2010, 06:44 AM
As it doesn't sound like death is in the very imminent future (assuming your son doesn't graduate until May/June), I wouldn't tell him anything until after he graduates.

Let him enjoy his senior year without this burden. He has a lot on his shoulders right now in applying for college and then choosing the college that extends an offer.

Unless something changes drastically, I would wait until after grad night. And, if a change in your condition necessitates telling him, don't burden him with how long you've known as it will only make him feel guilty and there's nothing your dear child could have done to change things.

I certainly hope that your situation isn't as dire as predicted and that something can be done to improve your health.

Just my two cents.

Peridot_Gem
11-03-2010, 09:33 AM
that is what the DR told me at my last visit. I have damaged lungs, blood coming from my kidneys, my ADLs are very bad and my meds are not working. I have NO INSURANCE!!!

the question is.....do I tell my son what the Dr. said or do I wait till he graduates? I feel like if I tell him, it would be putting too much added pressure on him at this time. He is a senior and trying very hard to do his best to get into the college that he wants. this will surely take his mind off his schooling and put it on me. I want him to be happy and not to worry about me. I told my husband, and we are dealing with it but he wants me to tell my son also. I am not afraid of death, just afraid of the pain that comes first. I am also afraid of what will happen to my husband and my son after I go. is there anyway that I can make it seem not so bad to them? my husband wants me to make a list of things to do after I pass. I have been putting it off, but I think I will do it today.

please to all that read this....yell, scream, and vent if you want. I have--and I am done. please also add your thoughts.Hi Lornark,
I'm so sorry to hear your bad news but i hope it's not coming at you so quickly as your Doctor says and you've asked about advice with your son, i'd let him graduate first, as he knows you ill but at least he would have got his graduation over and done with to except your news.

Refering insurance with the history i have trailing with me for the last 24yrs, i've tried up to 4 different company's in the past and that was before i was told i had Raynauds to top the lot last year, just the other illnesses i've stated on the site to the group as soon as they recieve the Doctor's letter it's a large NO.

So i wish you best of luck with your situation your in plus regarding insurance.

Hugs Terri xxx

froggal
11-03-2010, 10:12 AM
WOW! I am at a loss for words. What an awful decision to have to make. I am sure you will make the right decision regarding your son. God bless you!

magistramarla
11-03-2010, 10:39 AM
Hi Lornak,
Do you have to accept what this one doc says? Is there any way for you to get another opinion. Are you on any kind of meds to help with your symptoms? It seems that there ought to be something!
I've raised five kids, so I know that every teen is different. As his mother, only you know what your boy's personality is like. Most HS seniors are pretty stressed and pretty focused on themselves during that year. I agree with the others that it might be best to be supportive of him right now and tell him only what is necessary about you.
I hope that the doc is all wrong and that you will be looking forward to seeing his college graduation in four years!
Hugs,
Marla

morning star
11-03-2010, 10:46 AM
Okay that just goes all over me, first of all did the Dr. look all over you and see an expiration date on you??? NO!!! I mean come on..... that just urpts me..... no don't tell your son!!! You could live for another 10-20 years, these Dr's don't know..... I mean unless your on deaths doorsteps and believe me I know cause I work in an oncology clinic.... and I've seen patient's who won't live much longer....Hang in there girl and don't listen to what those dang Dr's tell you... some of them don't have the sense God gave them... If you need to see if you can see another Dr like a teaching hospital who accepts no insurance... Sending you Big hugs and hoping you have a better day and week.....

Islablue
11-03-2010, 01:41 PM
Hi Lornak,
Do you have to accept what this one doc says? Is there any way for you to get another opinion. Are you on any kind of meds to help with your symptoms? It seems that there ought to be something!
I've raised five kids, so I know that every teen is different. As his mother, only you know what your boy's personality is like. Most HS seniors are pretty stressed and pretty focused on themselves during that year. I agree with the others that it might be best to be supportive of him right now and tell him only what is necessary about you.
I hope that the doc is all wrong and that you will be looking forward to seeing his college graduation in four years!
Hugs,
Marla

I agree with what Marla says. This one doctor should not hold such a heavy weight when it comes to your life span. There is only one being that knows your life and that is the Lord. (that's my belief.. I understand not everyone shares this belief, but this is my opinion as asked) He is holding you in his loving arms and no doctor can put a time on how long you have left. My friend Chip lived years past what was predicted of him with bone marrow cancer. My grandfather lived with lymphoma three years longer than expected and wasn't suffering when he died. There are so many variables. If you start planning your death, you could lose your life. So don't plan it, girlie. Take it one day at a time and I hope and pray that you have a lot longer on this earth than the doc predicts. ((((((((hugs))))))))))))

rob
11-03-2010, 03:17 PM
Hi Lornak,

I am so sorry to hear of your current situation. One thing I need to say to you, and to all the other people who have read this thread, is that I apologize for the Spam post that appeared in this thread earlier today. As moderators we are vigilant, however sometimes the worst things can temporarily appear in the most serious of threads. I am sorry for not catching this sooner.

As far as what to do, well, I was once in the same place your son is right now, and despite everything that was going on, if my Mom was really sick, I would want to know. I would find a way to deal with graduation and moving on to higher education, and still be there for my Mom. I don't know any other way to say it. I don't know your son, but as a guy, I'll just say that we deal with things better when given the facts. "The real deal", as some would say. And as a son, our love for our Mom's will always allow us to find a way to do the things we know are right for our families, as well as for ourselves.

I hope the doctors are wrong, and I hope things get better for you, and your family.

Rob

Hillbillie
11-03-2010, 06:44 PM
Bless your heart, I know that has to be a great burden hearing what the doctor said. Like the others here I agree that the doctors do not know everything, Only the Lord knows. If you want to get things ready there is nothing wrong with that. I wrote letters to my loved ones, planned things out and prayed up so that If something were to happen It would all be fine and if I continue to live then nothing is lost. We(all humans) never know if we'll have a tomorrow, or a next week, or next year. I try to look at each day as a gift. I don't know your son so I won't tell you what to do about telling him. I do advise you to take a few days and get things worked out with yourself and then decide. But my advice to you is to LIVE, make the best of what days you do have. Tomorrow may be the end but then again it may be in 30 years.... no one knows. A body is a marvelous creation that can withstand all types of assaults and continue to keep going. Don't live to die... Just LIVE! Billie

rob
11-03-2010, 07:18 PM
Tomorrow may be the end but then again it may be in 30 years.... no one knows. A body is a marvelous creation that can withstand all types of assaults and continue to keep going. Don't live to die... Just LIVE! Billie

You are absolutely right Billie.

Lornak,

Doctors, are frequently wrong, we all know that. And, there is no test that can determine a person's will to survive. I have seen some people who were basically told that the end is upon them, push through and survive for a long, long time. One of my friends was told that she would most likely die from the effects of MS within one year of the official diagnosis. That was 22 years ago! She's still alive, and is in fact, the chairperson of our local MS support group. Doctors are intelligent, educated people, but that does not mean that they are always right. Don't take what they say. Just keep on living your life.

Rob

slim
11-03-2010, 08:38 PM
Hello lornak
I am so sorry too here you are so ill but you have too keep fighting and keep hope alive as you said you have a graduation to go too and a son and husband that needs you. Dont let one doctor tell you when he thinks you will die get a second opinion. Try a teaching hospital that takes patients with no insurance. There has to be something that can be done to get you on the right medication to get you back to feeling better. Call your governor,congressman any of these so called politicains that claim to have the peoples best interest. I know how it feels like when you want to give up. You feel like enough is enough already but like you i am also a mom so I have to keep fighting, crying and hanging in their until my time comes whenever that is . As for the advice on if you should tell yuor son I can only say that I lost my father six years ago and he took the decision away from me about how ill he really was so I was unable to say goodbye and that still hurts yeah I know he was protecting me because we were really close but damn it still hurts. Whatever decision you make only you know your son and if he can handle this . Hugs to you and your family and my prayers are with you. slim. ps kids are stronger than we give them credit for.

debbie-b
11-04-2010, 04:26 AM
I am sorry, that you have to go through this, it must be very hard.
I have to agree, with alot of the answers you have gotten so far.
Without a second or third opinion, I would not say anything to my son.

But even with all the opinions of different docs, no one knows, what is actually going to happen and when.
Because opinions are just that OPINIONS.

I wish you all the best.

Debbie

lornak
11-04-2010, 04:55 AM
I just wanted to say thanks to all that posted. I do feel better about what the Dr. said to me and I will be waiting to tell me son till I get much worse.

When it rains it pours------came home from the Dr. yesterday with a brace on my right arm. seems like my muscles and tendons are not working the way they should. cant lift or hold anything (typing sucks!!!). seems to me there is something else happening here, not just SLE. anyone else have this happening to them?

Nonna
11-04-2010, 11:26 AM
I don't know for sure, but that sounds neurological. I have that problem where I drop a lot of things cause I can't hold them. I see a neurologist to deal with it.

As to the other, think good thoughts; faith and will are sometimes stronger than logic.

Hugs
Nonna

SandyR
11-04-2010, 02:25 PM
Wow Lornak,

I just can't believe what I am reading. I agree with Marla and the others - I think it's pretty horrible of your doctor to put an expiration date on you like you are some carton of milk sitting on a shelf. How does he know? How can he practice medicine with no hope or optimism? He's just giving up on you and telling you to do the same? That angers me and makes me upset to think that he is treating you like this. And I have to wonder - if you did have insurance would your life be of more value to him? Would he be willing to put forth an effort into finding the right set of medications, excersizes, supplements, specialists and diet to help you live the fullest life possible? Is there no other doctor you can see? I don't know what part of PA you are in but there are so many good hospitals not to far from PA. Johns Hopkins, NYU, and so many others. Are there any you can go to and be seen with fresh eyes and a fresh sense of optimism because I agree with the previous statements - the doctors only have opinions and only God has the answers.

As far as telling your son, I am not a parent and can't speak to that, but I can say as a child it makes me upset when my mom holds back health information from me because she thinks I can't handle it. She did that to me once in college because she didn't want to upset me before finals and I was more upset that she didn't seem to trust me enough to tell me or have enough faith in me that I would be able to handle the information. I don't know your son but I am not one of those fall-apart-at-the-seams sort of people who can't handle bad news. I'd much rather know what I am dealing with and then form a plan of attack.

Whatever you do, you are in my thoughts and prayers.

Sandy

rob
11-05-2010, 05:38 PM
Hi Lornack,

I was just wondering how you are doing today. I hope you're having a good evening.

Rob

Saysusie
11-06-2010, 11:56 AM
Hi Lornack;
I am glad to hear that you are feeling a bit better about what your doctor said. Although I have to agree with everyone who said that your doctor was very premature in making such a terminal diagnosis.
I just wanted to tell you that, when I was diagnosed (1985), I was a very, very sick person. At that time, my doctor told me that I would probably not be alive by the end of the year because my symptoms were so critical and the medications were not working. Upon hearing this, the doctor and my husband became immediately involved in a very heated verbal altercation, after which, my HMO assigned me a new doctor the very next day. This new doctor happened to have just returned from a 4 week symposium on Lupus and started me on different medications, prepared an aggressive treatment plan for me, gave me a hopeful diagnosis and was very dedicated to giving me some semblance of a normal life. That was 25 YEARS AGO!! I have been downgraded to Mild Lupus and, because of his continued dedication, have remained in that status for more than 10 years.
Please do not let one doctor's insensitive and uncaring diagnosis define you or your life. Do get a second opinion and make the decision, for yourself, that you are going to do everything possible to get control of your disease and to prove that doctor wrong.
What you decide to do, with reference to your son, is such a personal matter and depends entirely upon what you feel is best for your family. I can only say that our children are, usually, much more resilient than we think that they are. If you do tell him, you may find that he is willing and ready to work with you to fight this diagnosis, manage this disease, and to live as well as you can.
Do not give up..keep fighting, keep learning, keep insisting that all that can be done is done. We are here to help you learn what all of the possibilities are in order to help you help your doctor to work for you, not against you. I am keeping you and your family in my prayers and please know that you are not alone.

Peace and Blessings
Namaste
Saysusie

rob
11-08-2010, 07:36 AM
Lornak,

You know, Saysusie's post reminded me of something in regards to Lupus and lifespans. My mother was diagnosed with SLE 22 years ago, and though she has had some tough times with flares over the years, she is still going strong at 73, and leads a very active life. If you count the fact that it's believed that she suffered from SLE for about ten years before the diagnosis, she has lived with SLE and thrived for 32 years! You should have hope, because there is hope for living with SLE, and my Mom is just one example of it. Go easy on yourself, and do what you feel is right with your son.

Rob

Nonna
11-08-2010, 12:27 PM
Lornak,
Rob's post made me think. I've been dealing with this since my 20's. I'm 62. As the others said, get a second opinion. Trust in the Lord to help you do what is best.

Nonna

ricketyrose
11-08-2010, 12:35 PM
It is important to gage whether or not you are dying by the way you feel not by what another human being has told you. I have had the doctor tell me, while staring at my ANA titer of 1:1280, that there was nothing wrong with me. I asked well how come I feel like I am dying. anyway doctors are human beings and very flawed ones at that. there information comes from experts who are themselves flawed. If you feel you are decending fast then you must also know the answer to your own question. it is important to note that the very same hormone that works hard to normalize after stress response is also the one that prohibits the proliferation of T cells and supresses the immune system through its alkalizing action, cortisol. so save your cortisol and do not stress, try to just flow. this hormone is yours and you need it, dont give it to anyone.