View Full Version : Lost and Alone
09-02-2006, 09:29 AM
I hate Lupus. In 1997 my aunt died of SLE after finally getting a diagnosis. In 2004 my mom died of SLE. My uncle has discoid and in 2004 I was also diagnosed with SLE! When I was admitted into the hospital I was tested for everthing under the sun. I told my primary care that it was Lupus and she didnt really believe me, said it was too rare. Even after I explained my family connection, she still didnt believe me. I even refused to take the Predinsone and she told me she would come back when my husband got there to talk some sense in me.
Since i have lost my insurance, and declined all meds. When my brother called about the death of my mom i stopped taking all meds. I refused a kidney biopsy and havent had any significant flares since. But no insurance insures i cant get disabliity. Any ideas, suggetions, etc. Help!!
09-02-2006, 02:40 PM
Maybe it would be helpful if you explained what you wanted suggestions or help with. I think just about everyone on this site would agree that if you think you have Lupus, you need to get blood tests to find out for sure. What are your symptoms and what were you admitted to the hospital for?
If your doctor is disbelieving, maybe it is because your symptoms do not fit. Why would she give you prednisone? Why would they try to do a kidney biopsy?
I know that we all would love to help you. Please give us a little more information and we will do our best.
09-02-2006, 04:05 PM
Sweetie, it sounds like you have decided in your head that because your mom and aunt both died of lupus, you're doomed to die from it too, so it doesn't matter whether you get medical treatment or not. But what happened to them doesn't have to happen to you. New treatments and therapies are being developed all the time.
A couple of hard truths here - I don't want to hurt your feelings, but I think you need to hear this. No one can help you unless you choose to be helped. If you turn your back on the medical profession because it failed your family, you are just hurting yourself, not the doctors. In the end, whether or not you choose to seek medical care is your decision, but don't make that decision for the wrong reasons.
The people here are loving, warm, and very supportive. All of them are more than willing to throw you a lifeline, but you have to be the one that hangs on.
09-05-2006, 11:55 AM
Well, i stayed in the hospital for a week and i was tested for everything imaginable...and finally i saw the rhuemy. He wanted the biopsy and i declined because he said it wasnt definitive so he took blood & urine every week for 9weeks before he was a beliver. he prescribed the meds and i took them until the death of my mom. my mom was 53 and my aunt was 49 when they died. the only difference in them is that i am younger (37), but i havent shared my feelings with my husband or other family. i just give them good reports and go on..but inside i feel like i dont have much hope
09-05-2006, 12:11 PM
Feelings of depression and hopelessness are normal when you have a chronic illness, and nothing to be ashamed of. Yours is even worse because of your mother's death. But the fact that your mother died of lupus doesn't mean you are going to also - your mother could have had complications or another medical condition that contributed to her death. This may be something you need to bring up with your doctor - explain about your family history, and ask him to be upfront about your prognosis; hopefully he will be able to reassure you. But one thing is for sure - you won't know whether medicines can help unless you take them.
09-05-2006, 02:30 PM
I wish I could reach out through this screen and give you a great big "mommy" hug. You have been through so much loss; and that all by itself can be too much to bear at times.
Lupus is not easy to live with; and as much as we all hate taking our medicine - my new friend, the best thing you can do for you right now, is to reach out and let those close to you nurture and encourage you. There are enough women here, just in this chat room - that you will have a "mom" everyday you plug in here. There are daughters who have lost their mothers, there are mothers who have lost their precious daughters. Our awesome and wonderful moderator, SaySusie - lost her precious daughter. There are women who have lost sisters, men who have lost mothers; and the list goes on. There are so many people here who are willing to help you through this. You are not alone, my friend, you will never be alone.
Let the fears you have become questions to ask your doctors, let your fingers scream out your frustrations on the keyboard....we all do it from time to time!!
Let those of us who have walked this road in front of you, be the ones who can help steer you clear of the pot-holes and road-traps (there are many; and most of us - or I should say, some of us have learned from our stubborn ways). Speaking from my own very bad experience, NEVER -NEVER suddenly stop medications without talking to your doctor first. To suddenly stop prednisone is very dangerous !!! Please understand that.
Hang in there dear friend, and hold-on we're all here to help you through this one day at a time. And sometimes, it's an hour at a time. So let the tears fall, and your hopes rise....and let the love here soak deep into your heart. We're here to help all we can.
Our administrator and moderator (SaySusie and St.James) will drop in soon to introduce themselves to you. So stick around, you have warm welcoming family right here to help you through. We're not fair weather friends around here - in sunshine and shade - these are the finest people you'll meet anywhere.
So, welcome Valawynn. Kick off you shoes, get comfortable and be prepared to learn alot, to be loved alot, to laugh alot, and yes, we even cry alot (I do, I'm a crybaby at heart).
Stay close and let us know how you are doing. Ask lots of questions, there are so many people here who would love to help.
09-06-2006, 07:50 AM
I want to echo the sentiments of the other posters. Please don't give up hope. It seems that you have just given in to the idea that you are going to die from Lupus, but it is not a foregone conclusion. However, by not taking your prescribed medications and not sharing all the information and feelings with your doctor, I feel that you are taking big steps in the wrong direction.
Please think about your situation. There are many of us living with this every day, and I can't speak for everybody, but I am not thinking about this disease killing me, I am thinking about how I can learn to LIVE with it. Please take care of yourself. We will be here to support you and help you in whatever way we can. We are all in this together and I personally don't want you to give up. I think that you came here for a reason, so let us help you.
09-06-2006, 08:02 AM
Hi Valywin :lol:
As you've already seen, this forum is filled with people who want only to help you through this journey.
I do not know how many posts on this forum you have read, but I do want to say to you that I (as well as many others) have lived with Lupus for over twenty years and it looks as if I will live another twenty years with this disease. However, my daughter died from complications of Lupus six years ago. I tell you this to tell you that, a familial death due to complications of Lupus does not translate into an automatic death sentence for you! However, if you refuse treatment and refuse to allow your doctor's to run the standard tests to determine if you do, indeed, have Lupus, then you may be setting yourself up for a long-long journey replete with health issues. Just because you do not feel it does not mean that it is not happening!
Biopsies are essential in trying to determine if you are having symptoms as a result of Lupus. Once this is determined, then treatment can beging.
In the area of treatment for Lupus, so much has been learned and treatments are much more beneficial than they were even two years ago. But, the important thing is that The Sooner Treatment Begins, The Easier It Is For You To Manage Your Illness!!
Everyone here wants to help you and our wish is for you to be able to live a relatively normal life. But, I do not think that there will be many of us who will agree that not taking meds and refusing to take the tests is in your best interest.
May I suggest that you educate yourself thoroughly about Lupus, about its treatments, about its symptoms, about its medications so that you can begin to make informed decisions as opposed to emotional ones.
I am sorry if I am being hard on you, but ONLY YOU can take control of your health and you can ONLY do that with knowledge and a willingness to do what you and your doctor's deem to be necessary to get you to a state of reasonable good health.
We are all here for you, whenever you need us and for whatever you need us for. Let us help you to help yourself!! Never Give Up..Never Lose Hope!! You Are Not Alone!!
I Wish You The Best
Peace and Blessings