Hi, my name is Rick. I'm new, new to SLE and new to online support groups or any other support group for that matter. The pain and fatigue is overwealming and Im no longer able to do any of the things Ive enjoyed doing. Just recently been diagnosed and all the people in my life that told me they would be by my side till we figured out what this is bailed. I'm scared and depressed and figured Id come on here and say hello.
Welcome to WHL. You've come to the right place to find people who understand what you are going through.
I know how frustrating it is to no longer feel able to do the active things that we've been used to doing. It is also hard for those around us to understand, since we look so normal and they just expect us to do our normal activities with or for them. The thing that bothers me the most is that I can't carry my grandbaby - I can't trust my knees to not give out on me while carrying him.
I'm sure that Rob will be along to chat with you soon. He's one of our awesome moderators, and he can give you the guys' view on all of this.
Meanwhile, read any threads or stickys that interest you, and learn as much as you can. The more you know, the better.
Hi Rick, I also have just been diagnosed, Just before Christmas. I don't know much about what we have, but Im sure we could help each other from time to time?
All I can say is that I have lived a semi normal life for the last 15 years, which it turns out is how long I have been living with this illness....I have become very successful in many things I have done over the years and as you know 'against all the odds'! It somehow seems worse since I have had the diagnoses! And although, at the moment I feel lonely and that no one understands, I will find a way to either manage or cure this!!! You must try to do the same. I know the pain is unbearable and It stops you from doing a bit of what you want to, but you must try to get out and see the world and try to live as normally as you can! Otherwise your friends will disserpear and when you are having a good moment there seems to be know-one around. Believe me I was bed bound for a year and thats what happened, then i become depressed and and it got worse. Fight it and get out there with as big smile as you can and research as much as you can, there are many alternatives and supplements that apparently can almost make it disappear...It's about finding out what works for you! let me know if you find anything that helps. If you ever need to talk you can skype me on bradleypaultaylor or call or text me on 00447909540305 good luck. Bradley
Welcome to you, too Bradley!
It's great to see two of you who are new to this helping each other out. It really helps to know that we're not alone in this. The folks here on WHL have very quickly become good friends to me. I have a wonderfully understanding husband, but there are some things that I would much rather gripe to my WHL family about rather than to keep complaining to him. I know that he's understanding, but he doesn't need to hear me complaining 24/7.
Originally Posted by Haggar
I'm Rob, and I was diagnosed with SLE in 2004. I had a bunch of people, including my fiancee, bail on me not long after my diagnosis. I know how you feel. I was scared and terribly depressed in the months after finding out I have Lupus. In the years since then, I've made a new life. I moved back to my childhood home in Maine. I have new friends who accept my disease and the limitations it places upon me. I've done my best to forget all those fair weather friends who stopped coming around after I became sick. I am on full disability, and I have found new interests that are within my abilities. Like you, I had to give up so many things I loved, but I've found new things that are just as challenging and fun.
My point is, there is hope, and you can live a fulfilling life despite Lupus. The loss of friends and dreams is hard to deal with at first, and it's not easy learning to live with and manage this disease, but it can be done. Things will get better. As you learn more about Lupus, and begin taking control of disease management, much of the fear will go away. It's a shock, and there will be some major lifestyle changes, but things will get better.
So, with your Klingon avatar, I'm assuming you are a Trekkie. We have a bunch of Star Trek and Sci-fi fans here. If you go to my profile page, and look at my photo album called "The New Toy Room", you'll see just how far my obsession with Star Trek goes. Anyway, welcome to our group, and make yourself at home.
Hello, and welcome to you too Bradley!
Originally Posted by bradley
Hello and Welcome Rich and Bradley;
Welcome to our family where you've already seen how kind and understanding the members are. I am so glad to see that the two of you are here and are already helping one another. Also, Rob (our Moderator) is a wealth of information from a man's perspective.
I know how lonely and isolated you can feel with this disease and that is one of the reasons why this support group exists, I want to make sure that you know that you are not alone. There will always be someone here to answer your questions, provide you with information, or just listen to you when you need to vent. I am very happy that you both are here.
Peace and Blessings
I just blew past the Klingon avatar this morning, but now that Rob has brought it to my dim mind's attention - WELCOME, fellow Trekkie! I'm right there with Rob when it comes to sci-fi, as is my hubby. We collect Star Trek books - I mean ALL of them, and we own about 3 big bookcases of them. We've read them, too! We also have our share of Star Wars books, Heinlein, Asimov, Alan Dean Foster and lots of others. We even own the vintage sci-fi book that Stargate was based upon.
If you keep an eye upon us, you will sometimes see Rob and I get into sci-fi conversations. Feel free to join in!
Also, I sometimes get into conversations with some of our UK members about Dr. Who, Torchwood or Primeval. Jeff and I are so into sci-fi, we even watch BBC sci-fis.