View Full Version : Theres more healthy Lupus lives than you think.
11-08-2010, 11:51 PM
If you set your mind to it, and do everything needed to get yourself in the best possible state, to gain remission, or stability in results then a life of "normality" is certainly not gone. Ive been in contact with a person whos had my exact condition, he's had kidney damage, huge leaking of protein, SLE, high dose steroids, long hospital stays, biopsy after biopsy, all that jazz.
Hes been in remission for 10 years and is as fit as ever, is a personal trainer and doesnt feel a hint of SLE. My girlfriends best friends Auntie has SLE, but has basically forgotten she has the illness, shes been in remission for 29 years. Theres a number of normal feeling SLE patients (if you even want to call them patients) that dont get on the net at all and you never hear of. These are the people I look up to, and aim to be like, because I WILL get there, I WILL play sport again, and this illness that I was diagnosed with at 17 years old is NOT going to change my life for the worst, theres way too much at stake. Theres no doubt in my mind that im going to win.
11-09-2010, 01:14 AM
i am glad you have such a great attitude and positive thoughts and i am glad for your friends that things have gone well for them but you must understand that not every case is the same and some of us the drugs are really the only relief we have and also some of us also have different health issues as well some of us go in and out of remission for me personally prednisone and plaquenil and mexotrexate helps me , we all have different levels of this disease it has caused me to be on walking frame i wish things were different but there not i had a full life once but i have learn,t to adjust that does not mean i have given up i have just entered a different stage of life. i wish you all the best and keep your positive thinking but some of us talking on the internet to each other gives us the support we need to get through the changes this has disease has bought to many of our lives and we all try to live our life to the fullest hugs my fellow australian.
11-09-2010, 03:11 AM
Absolutely without a doubt in everything you said. You do have to prepare for negative, or not so good outcomes.
However this isnt a case of denial, or drunk hope, things are honestly looking on the up for me. I know deep down i'm going to get there and live my normal life. I promise I will leave a post months down the track to how things have rapidly improved for me.
I love my AFL, football (soccer), mates, girlfriend, family and the normality of life way too much to let this beat me. I'm certain I will be just fine with no effects of anything. Not sure when, but it will happen. I'm 19, eat well, still excercise, and my latest treatments are well on track to being successful.
Thanks for your reply =], and be confident for the best things possible, because as I just mentioned, there "possible", and if its possible it can be done, and in my case it "will" be done.
11-09-2010, 04:08 AM
The attitude that you have is sometimes half the battle. Hope and faith are powerful medications. Belief in something can sometimes make it happen.
Staying positive helps,
11-09-2010, 04:34 AM
good luck and i am so happy for you and will look forward to hearing from you in the future i think you have a wonderful attitude and i hope everything works out for you and you do play the sport you love i will be wishing all things for you and more in no way meant that you were in denial and i to have known people that have been in remission for longtime i was once for a number of years myself but not the case now. as you are young you have your whole life ahead of you and i believe you when you say you will do just that positive thinking is a wonderful healer hugs and all the best kim l
I do agree that attitude is half the battle. I also believe that age is a huge part of the equation as well. I know I healed better at 20 then I did at 40. It is simply a fact of life. I will be keeping my fingers crossed for you and I will be cheering you on while I wait for the post letting us know that you have returned to normal. I would love to be able to write one of those myself
11-09-2010, 09:29 PM
I to think your positive thinking is great, and I know a friend who has scleraderma and tested pos for lupus and has never had a single symptom. I hope the best for everyone in this situation. I myself for a long time told everyone I am sick, but I'm gonna get better it's just taking awhile. Then I did a nose dive and just accepted it, but now I don't know that that is the right route either. I took by family on vacation last month because I wanted them to have that memory before I have to be confined to a wheel chair, but when we got back I realized I took them on our last vacation. I had in my own mind decided that it had to be almost over, and wanted to give them a memory for my funeral. So, excepting it led me down a road where I was ready to go. I was ok with it, and sometimes I still am. Don't get me wrong I am not suicidal. I am 37 years old I shouldn't be ready to die. That's why I joined this sight to get my hope back. Maybe, I will never be my old self, but I could sure be closer than I am now. So, you go --keep up that positivity because if you let it go it will fly.
11-10-2010, 12:21 AM
Hold on to those positive thoughts, you can do anything you want to it may take longer to get there but believe me its possible and YOU will Win.
Forty years ago I was given a 10year life expectance.(I was diagnosed at 18.)
I'm the sort of person that if you say I can't do something I'll say just watch me! I was a very athletic person I've never got back to that level of fitness but I've been involved in sport through the family - someone has to be the support crew- I've had a family which I was told I could'nt have, have worked since my meds were settled and travelled overseas - All these things seemed very unlikely originally.
I never mention lupus unless some one comments on my hands/ walking etc then I use it as an infomation giving opportunity and you'd be suprised how many people know of some one with Lupus, but don't know what it actually is.
11-10-2010, 01:19 PM
I do not know if age makes a difference or not i was 58 when i was diagnosised and without my meds i know i would not be able to do the things i can do. Even with the meds my joints are giving me a lot of problems and i still run low grade fevers now and then. Bonita
11-10-2010, 05:00 PM
I have to agree with everyone else that a positive attitude is an absolute necessicty when dealing with this disease. That, along with being vigilant about caring for your health, goes a long way towards getting you to some form of normalcy with this disease.
Keep your positive attitude and your determination to do everything that you can to avoid flare-ups and to take care of yourself. I am sure that you will find that you can achieve some normalcy and, perhaps, one day you may even achieve remission!
Peace and Blessings