I was diagnosed back in October. I’m 19 and recently suffered a major heart attack because of lupus. I don’t know how to cope with this, hope I can gain some support from this wonderful community. At least I know I’m not alone…
You are not alone…
You are definitely not alone. It a very unpredictable disease. There is no "steady course" You may be sick for years or not.
There are those lupies that have various degrees of pain and various symptoms. I don't think you will find 2 of us "in the same boat". I have rash almost all the time, sun sensitivity, I had mouth sores before plaquenil. arthritis in both knees and osteoporosis in left wrist and hand fatigue and the brain fog. .Recently I have been diagnosed with interstitial lung disease, which is mild right now. For a few days I said "poor me" then I decided that wasn't going to d me any good/ It is what it is. I try to get the best care I can find. I do what I can when I can. I was diagnosed 3 1/2 years and went on plaquenil 3 years ago.
You can come on this site to laugh or cry, vent or complain. We will listen.
Take care
Cindy
I was also 19 when I was first diagnosed. It can be very overwhelming and scary and it's so unpredictable. I am now 30 years old and have accomplished more than I thought I was going to be able to having Lupus. Just take it one day at a time. It may not all make sense right now, but trust me someday it will and you'll learn to live with this mysterious disease! Feel free to private message me if you need to vent! :) Hang in there...
I was diagnosed in November of this year and Fibromyalgia this past June. Luckily my Lupus is mild for now, but I find this site to be extremely helpful!
I'm sorry you are so young starting out with Lupus, but you 'will' learn to navigate your days....Welcome to the group, we all here are opened up to listening, sharing, and understanding what you are going through. Be brave and learn as much as you can about Lupus. If you live in an area that has a Lupus support group, that is very helpful. Good luck to you , and feel better.
I hope this community can give you some support. I have found a lot of information here and enjoy this site.
I was also recently diagnosed this year the day after thanksgiving and I am 18. So many shocking things are happening that I never knew my body would ever have to deal with. But I’m learning a lot from this group and the sense of no longer being alone is a relief in itself. Wishing you the best of luck.
Oh Sweetie it breaks my heart to hear someone so young is having to deal with this tricky disease. Robert we are always here to talk, vent, cry ( I know dudes don't do that but this disease can make you want to ) or share information. You are not alone. Keep track of all your tests and symptoms it will help you to have more control over your treatment plan. Find a good rheumatologist in your area someone that will work in partnership with you and your heart and family doctor. I am sure right now you are feeling overwhelmed. so I wont throw any more at you. God Bless you I hope you are feeling better for the holidays Julie
Robert im sorry for your diagnosis as well and it was a god send you finding our lupie site as everyone says this is a wealth of info and were all here for each other no matter how much or little so god bless you this x- mas and look too a better 2015. vegas girl
Hello!, my prayer's go out to you . Sorry to hear of your situation at such a young age . Dealing with Lupus has many disadvatages. We that are living with LUPUS never klnow what will come next . hang in there and hope that you pass through this moment , along with getting pleanty of REST is the major key to LUPUS....Beverly L.
You're not alone! I'm sorry that you are so young, but early diagnosis is key to a long life though! I agree with Beverly, plenty of rest is key! I think the worst part of living with this disorder is the Chronic Fatigue Syndrome. Pain comes and goes, but for me, that's the one symptom that I keep even when not in an active flare up.
I am so sorry that you were diagnosed at such a young age. I was diagnosed after a stroke. Because you now have internal organs involvement, it is very important to monitor any and all symptoms even if you aren’t sure it’s related. You need to be proactive. I know it will be difficult considering your age, but this group can help.
If something doesn’t feel right, please ask for a second opinion.
This is a great place for information and support.
As was mentioned, a team that can work together will be a great benefit to you.
Your youth as well as the drive you have will determine how well you manage your disease.
Remissions do occur, sometimes for years so your life is Not over.
Biggest hugs.
Welcome, Robert!! You're definitely not alone and there's much support here-- many people here who can relate, share advice and talk with. :)
I am sorry too.I know you are not alone.I am limited in english eventhogh I can’t express my feelings I always come to this wondorful community. I learn a lot.I feel connected otherwise my life is empty alone with lupus.
you are in good company.
I'm glad you have a diagnosis- that means they can get started helping you!
And there are plenty of folks on here ready to offer support and experience.
I was diagnosed in 1993 (after 2 years of running around trying to get diagnosed)- and I'm now married, teach guitar and I write and perform funny songs. I had rough times but got this thing under control and have a LIFE! There is hope!
Robert, where do u live? If you or anyone on this site lives in Las Vegas , NV pls. …contact us. Our organization, Colors of Lupus NV, help our lupus patients with resources and information. We do what we can to help them manage their lupus so that they can sustain their quality of life.
Check out our face bk page - Colors of Lupus Nevada …we post informative articles abt lupus and ways to manage it.
well god bless you dear, and have a very merry christmas......................i have had lupus for 20 yrs so you can make it sweetie...........purrs..catspaw1955
Honey I am sorry but your not alone....I got hit at 27 with ITP given only 6mos to live....I am 60 years old....so what that tells you is that it all has to do with you....since that day I have SLE, Sjogren's disease, Raynaud's , IBS and Addison's disease...and probably a few more coming who knows....what Lupus has taught me is patience...I never did have that now I do....our bodies are stronger than you know....you just have to tell it that it is in for a fight for a while and it will be right with you....Also when you feel good ...GO have fun.....when you feel bad....lay down...feel bad....none of this well you better rest....you can rest all you want and on good days you better take back your life...Everyone has there own way of coping this is mine....and you will find yours and YES we will be here......
Hugs .....Bernice
You're not alone!! Your life is what you make of it. Lupus is not a death sentence, but you have to listen to your body!! It's hard when you want to, and feel like, you need to do something. I have fibro too and it has been hard NOT doing! I want to go out and not sit at home, but sometimes I have to otherwise I'll pay for it. We are here for each other!! ((HUGS))