Hi All, I do not post often,but I look almost everyday at the new posts. I can't begin to tell you how thankful I am for this forum. Nobody wants to hear about your illness and if they do listen, they just don't understand. I have learned so much from all of the posts I have read. Many times I will be having a new symptom and I wil be reading posts and find someone who is posting the same thing. It makes me feel validated to know there is someone out there experiencing the same thing as me. I have been diagnosed with a Lupus like auto immune problem,but the doctor says he is not ready to say it is Lupus. I don't want to claim something I don't have, but all of the signs and symptoms are there. I take plaqenil 200mg twice a day and melexocom, not sure of the spelling, for inflammation. just keep posting and God Bless You All.
I have found myself not answering some posts, because I just don't know what to say, it is hard sometimes to find encouraging words, when you feel like crap yourself. But I will try and do better and answer posts as well as I can.
I have learned so much from everyone here! As someone who comes and goes, I am not cheating on WHL, I just don't always get on this site. Probably due to denial! Although I have not been 'diagnosed' with lupus, I do have many of the same symptoms. It is nice to have the support of all of you and I tell my family and friends about this site and encourage them to either join or at least visit. I think they can get a better idea of what I am going through by reading what you all are experiencing. Good and bad. I am not a one hit wonder to this site, I do gain valuable information. I am just so new to this disease and it's cousins, that I can only post what I know. Which is not much right now... I think you all are fantastic, amazing, caring, encouraging and inspiring!
I'm part of the group that sometimes doesn't know what to say.
I'm afraid I may say something stupid sometimes and make someone feel worse. With the emo issues I've been through lately and the meds I've been on, I'm getting even better at putting my foot in my mouth so I've been quieter about sensitive things.
Sometimes my fog is so bad I just can't think of how to put something too.
I don't see anything wrong with this spot at all. I visited lots of places and tried to "talk" with others but this is the only place I found where I felt like I could just open up and talk and feel comfortable. What stands out is the acceptance and love. I got a lot more than informative conversation when I first posted and I was floored...still am.
It's been a long while since I last posted something..but it's not because i've forgotten all about you guys, but because of, well, there's a few reasons I guess. I stop by here about once a fortnight, I don't always log on, because i'm not replying to any posts, but I always catch up with what you guys are doing, and most importantly, how you guys are. The thing is this...When I first registered with WHL, I thought it might help to vent, and let things out. I guess we all react differently, to different things, and for me, I think it may have made me more sad and upset to read what most of you have to go through, and to think that one day it might be me. I guess different things that work for some people, may not work for others. I really wanted to be apart of all this, but found myself getting even more frustrated because...none of us deserve any of this. My heart goes out to everybody on here, but I hate the sadness, and the misery, and all the worry...and I don't mean to offend anyone, I think it's great that this forum helps so many people, and don't get me wrong, I still come by to check on how your all going, but sometimes it's too much to cope with. I think what works with me, is just trying to block all my ills out. I deal with it when i'm sick, and try to move along with life with every opportunity I get. When i'm having a good day, I try to forget about all the pain, and what might be in store for me tomorrow. I guess I try to just live for the moment, and while i'm having a good moment, I really don't want to be reminded about my lupus.
So Phyllis, some of us do come back, we are here, but not all of us are strong enough to deal with these issues on a regular basis. I don't mean to confuse anybody, it would be a lot easier to be able to explain out loud in words, I hope I explained myself properly, and i'm sure there are plenty others who don't "come back" for very similar reasons.
wow, i am honestly overwhelmed with all of the heartfelt words that were shared in this thread. I want to respond to everyone, but there is no way that i can say anything any better than each of you did.......... I went 13 years searching for what was wrong with me, all the way knowing that something really serious was happening to my body. When i was finally diagnosed, i guess i was already prepared for the news. I had already accepted the disease and its destruction. My daughters weren't prepared and they started out visiting whl so that they could learn about lupus, but they were overcome with the sadness, and decided it was best for them to be compassionate even if they can't understand the magnitude of this illness. And you know, I don't want anyone that I love to understand, because that would mean that they would have to experience something similar, and it would break my heart for that to happen. Everyone has to face their individual life invaded by lupus in their own way......Each of your testimonies demonstrate the diversity of our family, the acceptance of our members, and the common thread that bonds us together. Everyone is welcome here, whether you participate in posting or you make the occassional visit. The important thing is that we all put ourselves first, we become our number one advocate, and we have confidence in our decisions. thank you for reminding me what whl is truly about.
share a smile today
This was/is a beautiful thread and I am so thankful that you started it. I have had my own hypothesis about why some members never return AND why some senior members discontinue their participation. From speaking to some of the senior members, I've learned that there reasons are similar to those expressed by Joaney and Mountaindreamer's daughters.....the overwhelming sadness!
This is a heinous disease that is so debilitating in so many ways. As such, many of us suffer greatly and have had to endure the complete loss of a lifestyle that we once enjoyed. Of course that makes us sad!
However, it is very, very important to me that WHL ALWAYS remains a place where we all feel safe to express every emotion that we feel while living with this disease; that we accept each and every person who is here seeking help; that we are always kind, understanding, supportive and comforting; and that no one is ever judged or criticized. One thing that our "lost" members have always made very clear to me is the fact that the people here have helped them immensely and that they felt as if WHL was like a family.
Even as such, we all, at times, need to take a break from our family/home and need to be somewhere that does not deal with our disease at all. A sort of "vacation", if you will. This, I completely understand and I totally respect.
WHL has been here for 8+ years, members have come and gone (for many varied reasons, I'm sure), but the heart and purpose of this site has NEVER changed. For that, I have to thank each and every one of you for being so kind, caring, understanding, and open! I'm not sure that we can do more than that, because doing what you do is beautiful to me!!
Thank All Of You
Peace and Blessings
Look For The Good and Praise It!
I agree with Saysusie, everyone needs a break from time to time. There's absolutely nothing wrong with that. The one thing that worries me from time to time, is that someone may choose not to come back because they felt like they were ignored, or somehow felt unwelcome. I have never seen anyone here do anything to ever make someone feel unwelcome, but different people can perceive things in a way that was unintended sometimes.
Like Abbasgirl, I sometimes find myself not knowing what to say. On the days when I have a clear head, the words just flow, but on the foggy days, it takes me forever just to compose a few lines. I know what I want to say, but I can't get it from my head to the screen. I would never want to say the wrong thing, especially to a person who is new here, and scared. I often struggle with how up front I should be to someone newly diagnosed. I don't want to sugar coat things, but I also don't want to make someone's fear even worse. It's a fine line I guess. The edit function is my friend for sure!
Edit, indeed! Are you still using that voice writing system? Right now, I'm sitting here quiet as a mouse, while DH is struggling with a voice writing system on his laptop. He's trying to save time on writing papers, but I swear I could type it much faster than what he's doing. I keep hearing him say "delete that" or "correct this" over and over. Sometimes he adds a few expletives that he then needs to delete!
I hope that yours works better than his.