View Full Version : Yet another newbie
05-14-2009, 11:51 PM
My name is Jerzi and I was diagnosed with SLE in November after many years of doctors pondering if I had it or not. I've had some brutal flare ups this past year. My joints have been hurting and swelling much more than before, my fatigue has gotten worse (I didn't know that was possible for me), and I swear I've got a perpetual malar rash. It was also discovered three weeks ago that I have nephritis.
I hate admitting that this is getting to me, but it is. This year is my last year of high school, and my first year of college for hairdressing (somethings I've wanted to do for years, but now I'm not sure if I can). Just getting to school and trying to remain my usual happy self has been harder than it's ever been. Most days I don't even want to get out of bed cause my joints are just killing me, and even the thought of movement makes me tired.
This year has just been completely lame. I've lost so many close friends, and many of them were the ones I thought would be the ones to support me in this.
I apologize for going on about this so much in what could've just been a simple hello.
05-15-2009, 12:41 AM
Hi , here you will find people that understand you . We all understand your good and bad days. if you have any question please feel in asking we will all help you
05-15-2009, 04:36 AM
Hello and welcome to the forum.We are glad you found us.WE ALL understand what you are going through.Just take your time,rest when you can and take one day at a time.As for friends....yes...sickness gets rid of the 'pretend' friends so fast.It hurts i know...but at least you will find 'true' friends now.Ask anything,look around the site.Check out the arcade and if you go to community then press social groups....we have fun there too.
We are here for you.
05-15-2009, 08:02 AM
Hi and welcome . All you can do is to take it one day at a time there will be good days and bad cherish the good . Bonita
05-15-2009, 08:11 AM
First, there is no such thing as going on too much with us! This is the place where you can go on as long as you like if you need to vent, express how your are feeling, or just want to talk. That is why we are here, so no apologies needed!
You will find that many of us, with this disease, have discovered that our illness has weeded out those whom we thought were our friends. The good part is, it has also helped us to discover who are true friends really are. Often, those true friends end up being members of our family or someone that we may have overlooked when we were healthier. But, you are not alone in this area and you will find that it is to your benefit to shed all of those people who are not there to support and understand you. Once you've surrounded yourself with those who are truly your friends and who truly understand & care for you, you will feel blessed to have them in your life and they will feel blessed to have you in their lives. Do not stress over the loss of people who will only be toxic to you. It is best, for your health, that they are gone!
I'm sorry to hear that you are struggling with this disease at such a young age. But, please don't think that your future is gone. I understand how limiting the debilitating fatigue can be. However, if you allow yourself the appropriate lifestyle changes, take your medications as prescribed, avoid all of those things that can cause flare-ups, listen to your body, and learn all that you can about this disease and how it affects you, you may be able to maintain a somewhat normal lifestyle. Please know that everyone here wants to help you to do just that and we are here for you, whenever you need us. You are not alone:hug:
Peace and Blessings
Welcome to the site.
there are amazing people here that can give you support and answers too questions.
you will have days you don't want to get out of bed we all do, when i do i said i woke up this morning and thats a plus, and i just stretch an slowly get up.
If you lost friends from being sick they weren't your friends in the first place. don't worry you will make new friends and on this site a lot of new friends who have what you have and can help you.
have a blessed day.
05-15-2009, 09:42 AM
You came to the right place for support and understanding. I am sorry your so young and trying to start your adult life and you have this ugly disease to deal with. I send you so many hugs and prayers. Joint pain is the worse and we all understand. Just know it does pass as well as the fatigue. You will have ups/downs and everything in between. Fight to be happy and positive but know you are free to say whatever you feel or thinking here as so many people here do understand and will share their stories with you which is comforting
05-15-2009, 09:44 AM
i love your name! it's very unique. anyway-this site is amazing. having started having symptoms 10 years ago (in 7th grade) i know what you're going through for the most part. i'm sorry this is happening. i know it's very hard when you have a set schedule that you can't just call in sick or take vacation. you're almost done! i think you will do great in college, don't overwhelm yourself with classes, take some later classes, don't stretch yourself too thin and rest as much as you can. stay positive and we're all always here for you! thoughts and prayers always.
05-18-2009, 12:56 AM
Thank you to all of you who replied. Your words greatly brightened my day (or night, morning.. it's late, I don't know what to term this, but you get the idea haha). My doctor constantly tells me that I'm not alone in this, and that there are other people with this oh-so lovely disease out there, but it just seems like words when he says it. As sorry as I am to know you all have this and the same symptoms in varying forms, it's comforting to hear from other patients that I'm not alone in this. It's a lot more encouraging to hear it from other people with lupus as opposed to people who don't.
05-18-2009, 02:52 PM
Hi Jerzi!!!! Sorrry im late in WELCOMING YOU!!!!!:wacko: Im gald you found us!!!!! WE ARE HERE FOR YOU!!!!! Yeah, we all can relate to the loss of friends unfortunately. Thats why you found us though! So WE can be your NEW FRIENDS!!!!! XXXXXXXXXXXXXXXXXXX:cute:
05-18-2009, 04:59 PM
i too apologize for being so late welcoming you to our family. I am so sorry that you are having a rough time of it right now, and i hope your symptoms will subside and that you will have some really good days.
I also hope that you will be able to attend and finish your hairdressing education....it has been your dream, and i hope it comes true.
Has your dr. started you on any medication? Let us know where you are in your treatments, and we will try to help you with any questions that you might have.
again, welcome, i am glad you have joined us.
05-27-2009, 02:44 AM
Know exactly what you mean.. I read your posts and thought 'thats what I thought'. It's a bit strange having this community based on a disease but, hey, it works!
Chin up. Hard some days but try. We are there with you..
05-27-2009, 05:53 AM
Sorry I missed your post earlier. Welcome to the forum. I am keeping you in my thoughts and prayers. Stay with it and follow your dream. You may have to take it a little more slowly, but you can do it.