Lupus Support Group

It's hard for me to write about this. I feel hopeless. Everyday I feel worse but my doctors don't know what is happening. They just up the plaquenil and hope things will get better. I'm having such a hard time continuing to fight. My constant battle with the physical effects of the Lupus and RA is joined and almost overshadowed by the mental problems I have with Bipolar disorder. I upped my medication a while ago and I was feeling better but now I just feel destroyed. Everyday it seems impossible to even move the covers off of myself to get out of bed. I feel guilty talking about it. I know there are people who have it worse but no one in my life can understand. No one knows what it's like to feel trapped in my own failing body. Going through all of this and full time college is the hardest thing I've ever had to do. It's near impossible to juggle when I don't even feel like moving or see the point of it. I feel so alone in my struggle. However, I really take comfort in this site. I know I may be new to it but it's comforting to feel as though maybe someone understands a bit of what I'm going through. I just want to feel better.

eruelle,I understand what you are going through.Believe me,I do. I have been diagnosed with SLE for 25 years and am just starting to learn things,recently,that NONE of the many doctors I've seen over years has even cared to mention. This site has been very informative,supportive,and emotionally uplifting for me. I have only been on this site a short time,and have made many friends,gained ALOT of knowledge,and found people here that TRULY understand my situation. My friends are helping me in so many different ways that I feel overwhelmed with HELP(for a change! LOL!). NEVER feel guilty,ashamed, or embarrassed that you have these conditions. It is NOT your fault. I have experienced the self-loathing,depression,and guilt you speak of when it comes to the limitations of these conditions(I also have a hard time getting out of bed evryday! LOL!). I have no-one in my life that understands the daily challenges of living with these conditions (I also have multiple conditions). Keep your head up! Although I've had SLE for 25 years, this site has awakened me to the fact that my doctors really HAVEN'T been paying attention to me like they should have been. They have just sent me for bloodwork, ignored my symptoms,prescribed me pills,and kicked me out the door. That is ALL about to change as I have learned alot here in the group in a short time. I wish my doctors would have informed me(throughout my life!)about the things I've just recently learned here on MDJ(in just 4 weeks!). Maybe I could have avoided the serious health conditions I am recently experiencing. I'm really in rough shape! LOL! Never give up hope,eruelle. There are MANY different approaches to take in coping with Lupus(I've tried most of them)and they all have their benefits. Most importantly,keep an open mind, never give up, and try not to be so hard on yourself. Laugh a little. Laugh at the Lupus. Don't let it take control of you...YOU take control of the Lupus. I'm sure you will get great advice and find many people here that will understand. Get feeling better soon. Little Brother Lupus, Bryan

It is hard to cope with the all challenges you face. Please hold on, sometimes it takes a while to find the right combo of meds for each of us. Just remember you aren't alone.

Alison

Eruell, First of all I would like to say you are a very strong person. I also deal with depression and lupus and the lupus it hard enough on its own. I know about Bipolar disorder my sister and my niece both have bipolar and I see how hard it is for them. There is someone here to alway talk to and we are very good listener. Don't give up hope and fight for yourself it won't be easy but you can do it. Hopefully you well get the right combo of meds that will work for you .

Eruell, Welcome to group. We are a big family and we go through all of this together. I know you will get support here that you are lacking from those around you. I don't have Bipolar but I do have PTSD and so I can relate to some of what you are going through. I think the biggest help for me was taking time out of my life to commit to being well emotionally. So much of our life is reflected on how our emotional health is. I did a program called EMDR for about two years and it completely changed my life. It is more specific to PTSD but it worked when other treatment options had failed me. I just kept searching because I had so much inner turmoil that I needed to make peace with. So I guess my point is even though you feel like you want to give up you have to keep going. When I am in that place my husband always tells me "one more push." I always felt like a weak person and my therapist asked me one day if I realized that I had gone through absolute hell but still managed to finish college with honors and be a good parent and many other things that I didn't give myself credit for. I think you have more strength than you realize because you are suffering but still going to school which shows you still have hope that there are better days ahead for you. So don't give up...one more push.

April

Eruelle......I know this is an up hill battle but just continue to fight and keep strong......were all here to support you through this tough fight.

Eva

Thank you so much to everyone for all of your strength and advice. I realize things will get better. I just need to battle on. Through all of your support I think I can really do it.

I am really glad to hear that you are feeling like you can do it. It will be good sometimes and bad sometimes but you have us when you need us and that makes a big difference. Good luck.

April

HI ERUELLE,

LUPUS ALONE IS EXHAUSTING. MOST PEOPLE WITH LUPUS HAVE DEPRESSION AND OFTEN HAVE FIBROMYALGIA AS WELL. I CAN IMAGINE TRYING TO GO TO SCHOOL AND HAVING LUPUS/BI-POLOR.

YOU MAY WANT TO TELL YOUR PSYCHIATRIST THAT YOU WERE NEWLY DIAGNOSED WITH LUPUS. SHE MAY WANT TO GIVE YOU ADDITIONAL MEDICATION. YOU ALSO NEED A GOOD RHUEMATOLOGIST (IF YOU DON'T ALWAYS HAVE ONE)DON'T GO WITH JUST ANY ONE, FIND ONE THAT FITS YOU, LISTEN, AND TAKES YOU SERIOUSLY. MAKE SURE ALL YOUR DOCS KNOW WHAT MEDICATIONS YOU TAKE. MAYBE YOU NEED A BREAK FROM SCHOOL UNTIL YOU ARE STABLIZED AND ARE ABLE TO FUNCTION. AND STAY ON THIS SITE, WE ARE WILLING TO SUPPORT YOU.

SUE

Thank goodness, 1. I have finally found someone else who is suffering the same issues that I am and 2. I have FINALLY found someplace that has information about both Lupus and Bipolar. I have been looking for weeks now and have come up with nothing. It was by luck I think I found you all here. I'm not doing so great at the moment. I hurt everywhere, way to many swollen places, I'm exhausted but have trouble sleeping due to all the pain. I can't tell if I have lupus fog or bipolar fog. Either way I'm foggy. I have an appt with my rhuematoligist on Monday. It will be fun to see what we come up with as far as meds that don't enter fear with my Bipolar. I missed work today because of the pain and swelling. Not sure what to do. I'm sick and tired of being sick and tired. I just don't know what to do anymore.