Lupus Support Group

Thank you so much for writing! I didn't see all these posts till now, wasn't seeing anything in my email so I didn't follow the link. So happy to hear from all of you even though it's under such yucky circumstances! Don't lose hope on children. When I was first diagnosed at age 25 or so, they told me I would most likely never have kids. I have 2!!

I have to say this is probably the worst flare I've had yet. The exhaustion is indescribable (sp?) - I also have nose ulcers right now. Gross! And depression setting in just due to the frustration. I'm wondering if the Cellcept is making me MORE tired???

Anyway - its just so nice to have people to relate to! Take care and keep in touch. I will be checking in more often now!

rusha727,

Welcome to the group! There are lots of people here that are always here anytime you need someone to talk to

Feel better!

Kelly

i'm crying now of seeing you all with the same illness supporting each other i'm 19 years old suffring from lupus i really know what ur talking about depression lonlyness illness...

ishou, Go ahead and cry. Let it all out. I'm a man with Lupus and I am not ashamed to admit that I cry too. I got d/x'ed when I was 17,so I know what you are going through. Being a guy with Lupus is especially hard,as mostly women are afflicted withit. I'm a RARE case and experience ALL the same things as you,physically,mentally,and emotionally. Plus there is the added bonus of "not being manly enough" because of my SLE. We're here for you. Calm down...Breathe...Relax. Little Brother Lupus, Bryan

ishou, it is not that uncommon for us to feel alone and isolated. Last year I felt so terrible that I did only the things I had to do. I didn't go out much and tried to avoid invites as much as possible so I wouldn't feel bad saying no to things at the last minute because I didn't feel well. So I promised this year I would try not to do that and I have been out more so far this year than last year as a total. I am however totally exhausted and feel at any given moment I could sleep for three days. It is hard to balance it all and I think we all struggle and get down. That is why I am glad I have everyone here.

April

TraceyG, welcome to this amazing group You will find so many caring and informative people here. I immediately felt overjoyed when i joined in June 2010 and get on this site just about every day It's almost like family! Even when I am not sick, I know how important it is to give encouraging words to those that are sick or flaring. Hugs to all ~ Julie

Ishou, I'm sorry you are having such a rough time. Please come and vent here anytime! We are all here to support each other. You can also PM me anytime. I hope you keep posting!

Take Care,

Amy

hi im new as well only found out last year never been so tired. have 2 young kids one nearly 3 starts local primary in september very hard work.other goes already shes 6. doing ok a minute sick of hospital appointments now. gettin little jealous people out in sunshine. or is that being normal?

tracyxx, my name is Bryan (a.k.a. "Little Brother Lupus"/user-name "J3man". Welcome to the group. There are ALOT of very helpful,understanding,and knowledgeable members here to help you with ANY questions you may have with regards to SLE/Lpus and several other varieties of multiple conditions associated with Lupus. I,myself,have been living with Lupus for 25 years now. If this is your first year of diagnosis,hunker down,be patient,and keep an open mind to ANYTHING that may help you. What you are feeling IS quite "normal" as you will discover once you have had time to find your way around this support group and meet others with the SAME symptoms,feelings,and thoughts as your own. If you have ANY questions,please feel free to ask ANYONE,especially the Group Leaders can help you. Look for their tiles by their user-names (ex. "fibroforever","mumeva", "Pandora",and "Redhairali" are ALL Group Leaders here). Also, request "Friendship" from people you talk to with similar problems as yourself. I also reccomend downloading the MDJunction Toolbar(it's free)so that you can have live,instant messaging "Chats" with people. Hang in there! It's early on for you. Take care. Little Brother Lupus, Bryan

tracyxx....I know how hard it is to see people outdoors enjoying themselves...I used to get jealous myself until I decided that I could turn this around and find things that I like to do indoors.....I go outside just when the sun is about to set and either garden or sit in my swing and enjoy the spring and summer evenings....it's the best part of the day I think.....so maybe you can find something you really enjoy doing in the house....crafts, music, reading....I know you can be creative. I have learned to knit and crochet and I love seeing the outcome of what I created. I wish you the best.....keep positive.

Eva