(((Hugs..... lean all your body weight onto me. I can hold us both up right now)))
It sucks. Simply enough.
There is no diagnosis with the word Lupus that makes us run around and yell "yeah... it is only Lupus!!!!"
However, on the other hand "yeah, it is Lupus"! I am not crazy. I am not a hypocondriac. I have a disease that we can recognize, and begin to treat. It may suck, but I have friends that I can lean on, and will let me sob it out or hold my head up high.
You are only 18. Many, if not most of us, can trace our root issues back that far. My doctor figures I have been having flares for 15-20 years (yes, I am ancient at 43 years old). But we didn't know what we were looking for, even though my great grandmother was also a Lupus patient.
Know that you will have a full life. That was my first concern. I have children, a wonderful job, a great home, and a darling hubby (for 22 years now). You will learn how to deal with your body.
So lean on me. Lean on the other members. Lean on your family. And lean on your own strength and determination.
And grieve this. It is also OK. We don't wish for this, but we learn to deal with it.
Lots of love, and reach out if I can help at firstname.lastname@example.org.
Last edited by LAP717; 04-12-2010 at 05:55 PM.
The Following User Says Thank You to LAP717 For This Useful Post:
LAP717 said it very beautifully, and it is exactly how we all feel on this group. Welcome to WHL. Feel free to explore the site, especially read the stickys at the top of each forum, and learn as much as you can. Then, feel free to join in on some of our conversations and ask questions. Knowledge is power, so arm yourself with lots of it when you talk to docs.
We have several young people on this board, and I'm sure that you will see them here. As LAP717 said, getting a diagnosis like Lupus is scary, but it is not a death sentence. Like all of us here, you will learn to change your lifestyle a bit, figure out which meds work for you, and then go on with your life.
Invite your Mom to join WHL so that she can ask questions and learn, too. I'm a Mom and Grandmother, as many of us at WHL are, so we can understand what she's going through.
Take care of yourself, sweetie. Know that you are not alone in this and lean on us as much as you need to.
Welcome to WHL. I can remember that awful day back in 2004 when I was diagnosed with SLE. I walked around in a daze, just shaking my head, and trying to grasp what I had just been told. It was like suddenly living in the middle of a bad dream that you can't wake up from, only to realize that it's not a dream, it's real.
I know you are scared, and feeling overwhelmed. There is no good or easy way to find out you have Lupus. It's going to take some time to sink in, and the upcoming days will be difficult. But, once you begin a proper treatment and meds, things will slowly get better. As others have said, it's not a death sentence by any means. We have people here who have lived many, many years with Lupus and thrived despite it. Take me for an example. I've been living with Lupus fo six years now, and although I have my bad days, I have plenty of good ones as well. My mother is 73 years old and has lived with the disease for almost 20 years, and she's still going strong, and is very active.
Please know that you are not alone. There are a bunch of people here who have been where you are now, and we understand what you are going through. This place is kind of a safe haven for many of us. The understanding and support some of us may not get in our daily lives, can be found here 24 hours a day, 365 days a year. There is an unconditional acceptance here that really can help a person get through the roughest of times. I hope our words give you some comfort and hope. Hang in there, because things will get better. And until then, there are plenty of good listeners and shoulders to lean on here.
Welcome and many Hugs to you, Chasityloveshm,
I've read the others welcomes and they have said it all. Marla is right about having your Mother join us. I'm ready to have my daughter join us. I have been able to trace my flares back to the time I was 13 or 14. My pain was so severe my mother took me to an orthopedist. You have a name to your condition. You know now. I was in a painful tiring limbo until last December. I'm 62 years old. I'm active. I have 2 children and 5 grandchildren. I've had a full Life and I'm still going strong. I'm going to try and walk a 5K run this month.
You are not alone; we are here for you. We understand believe me.
Hugs and more Hugs,
Chasity, Like you I am a newbie to this forum. However, I was diagnosed with discoid lupus in 2005. I also have profundus lupus/mixed connective tissue and morphea. I was wondering because you are only 18 and I have a daughter that is 19 and stays tired all of the time. Her muscles hurt all of the time and last year she had a strange rash that was diagnosed as pityriatis rosacea( not sure if I am spelling that correctly) This rash lasted for a whole year. Do you have any of these problems? I took her to the doctor in October and the doctor just said she was tired because she didn't sleep well because of allergies. I don't think she was checked for anything other than colestroel and sugar and the normal blood work. How was your diagnosis made? What tests were performed? Thanks and I hope that you are feeling better since you have had a few days to get your emotions under control. Know that we are all praying for you and are here to support you. We have to keep on and the best thing for those friends is for you to educate them because this is real and because you probably look healthy people don't understand. Have a great day. and God bless.