Hello. First time post so I will try to keep it short. I'm glad to have found a protected community.
I have suffered with lupus for about 4 years. I grew up in foster care so I have no family support system already. My husband did not cope well. Maybe it's partially my fault. I told him it wasn't a big deal. Not to worry. He never read about it and eventually he stopped coming to my appointments.
Then I started losing friends. My personality changed. I got worn down from the fatigue... You know how it is. People are like a revolving door in my life. They come in for a month, maybe a few because they see how lonely I am. Think they can be my friend. Boom a flare hits. And they're gone faster than you can imagine. Often they "need space", they're "busy working" or they literally just vanish.
The one light in my life is my awesome job. I'm not bragging. But I changed careers right after my diagnosis and I found a job that's mostly desk work and analytical and I can also work remote. I have a great team and they are supportive. I even found out I won two awards yesterday!
Marriage continues to be same old. Sometimes it's just easier to shut myself down emotionally than to let harmful comments from our spouses hurt us, you know? Comments like "I wish you were a normal wife" can really bite. And I was trying to express my loneliness yesterday, and apparently he thinks I'm obssessed with the fact I have no friends. Well, maybe a little when it's kinda there... Everyday. In my face.
Ah well. I also go for my first Benlysta in July. I am driving myself during my lunch break and I am resolved to drive myself back to work. No one will support me during unfortunately. I recently had two very close friends who swore up and down they would show what it meant to have a close friend and blah blah blah when they saw how family didn't support me... Yeah right. Look where I am now.
I find much peace in focusing on our wholistic connection to the greater universe. I have also tried acupuncture. That was okay. I think just meditating for an hour a day helped.
Oh- and just so you get an idea of my treatment itself. I am on Plaquenil, Arava, Wellbutrin, Celexa, and Nuvigil.
Of course we plunge into the Prednisone during a flare. Medrol packs give me migraines.
Oh and I’m tapering Topamax because migraines are now a part of my life. I also have BuTrans patch.
I go to the John Hopkins Lupus Clinic.
Everyday I rate my pain around a 6 or so. I have severe knee, hip, malar rash, pleurisy, pericarditis, kidney function issues. My fav hobby is to take cold showers and sit in the dark. It helps my flares stay at bay immensely. Heat is my #1 enemy along with sunlight.
People can be so cruel even family ,with lupus you appear fine and your not if they dont physically see anything wrong they dont want to be bothered or you are faking or over being a drama queen ,Lupus can be lonely at times you are truely blessed to find work I just got laid off after 12 years and I have to start all over again and I take care of ny mom and did I mention I am in my forties.I stand firm in my belief in God and you have tooo ,meditation is good for the soul and it tunes out all negative from around you .I am not a quitter I say I have lupus ,lupus does.This was before I got lupus ,
not have me,Everyday is a struggle you got to hold on theirs always a brighter hour or day but you got to want it and beleive.
Curious about the acupuncture path. Did you feel that it worked? How long in terms of days did you do it? Weeks, months?
Hi and nice to meet you. Your message moved me. I too practice meditation and find it helps. I get acupuncture every few weeks and it is a modality that agrees with my immune system. I understand feeling alone and not having a lot of friends. My good friends have weeded out through the years. Most just don't get that I am ill. They lose touch because I am unable to make a wedding or visit. It's definitely difficult. Lately, I've been connecting with my therapy team. My massage therapist and I have become friends and she is one of the few people that really gets what I go through.
That is awesome that you have a wonderful job. That is something I struggle with because I have a lot of ups and downs. I am on disability.
As for the other post asking about acupuncture. Mine can "put out fires" or just treat my immune system in general. I find both very helpful. He also uses Traditional Cupping for pain areas in my neck and upper back.
Take care
Lori
I just wanted to say, "Hello and I'm happy to meet you". :)
Hi Mel, your posting struck such a chord with me. I've had lupus, diagnosed 3years ago. I also feel like i'm turning into another person. I have lost contact with most of my friends. I just don't ever feel like calling and am able to attend very few social events. For instance, i took my daughter to zoo summer nights 1 and1/2 weeks ago, i didn't fell well enough to go, like usual but went anyway. i've been super knocked out since then. My niece is getting married 8/3 and my sister with friend is staying with us. i have no idea how i'm going to get the energy to clean the house , get ready, never mind attending the wedding. thank god for my DH, he totally gets it and has taken over so much more responsibility with the home. also, i have my beautiful 16yo daughter. If i didn't have them, i'd be desperately lonely. i'm working full time but struggling with 5 days a week, trying to get throught the days, i go to bed as soon as i can maybe 7 or 8 sometimes earlier. By fridays, i'm so exhausted, like a zombie, saturday, i can do a little, maybe a couple of hours of housework later in the day. on saturday night i take methotrexate, which wipes me out for sunday. the only thing i do on sundays is make soup later in the day. i've even been missing church for awhile which i have never done in my life. I have a strong faith and it helps. i'm going to start some kind of meditation program and i think yoga would help but getting enough energy to go is difficult. i'm also taking plaquenil, cymbalta, folic acid, extra strength tyle nol, naproxen. The methotrexate has help with missing work and has evened things out but i feel best when i'm on prednisone. of course, my rheumatologist wants to limit the prednisone. i have a huge extended family but a small immediate family, 2 sisters, 1 brother who live out of town most of the year. i'm not depressed but getting very discouraged. My heart goes out to those of you who are young, trying to take care of little kids or thinking of having littel kids. i'm 61 now, thanks for listening. mary
Hi Mel,
Just wanted to say Hi and Welcome hope you get the support you need here.
Mel i am really sorry to hear what you are going through I can only imagine. Honestly if your “friends” can’t understand you and stick with you they don’t really care for you .someone who cares for you cares for your well-being. I have been lucky to have such beautiful and thoughtful friends family and even strangers by my side. Just know that everyone here in the glforum love you and we care for you .hugs and kisses from LA and good luck
Thank you.
Yes Ann. Honestly at this point that’s my main coping strategy. I pretty much pay for my contact and human touch. I have my groceries delivered. Not by family but by a service. I get massages. Not by family but from random professionals. I get help cleaning my home. Not from sisters or neighbors but from household help I hire who also talk to me and are my age. It’s actually not so bad. 
and you’re right and I think that’s why I lost my friends. I had given so very much and the time I couldn’t, they dropped me. I’m done with negative people like that. No more!
HI MY NAME IS FARYDIN, IM 22 AND IVE BEEN IN THE SYSTEM ALSO MY PARENTS GAVE ME UP RIGHT AFTER I WAS DIAGNOSED WITH LUPUS. AND I WAS 7YRS OLD MY MOM CALLS ME THE CRUSE CHILD. I DONT HAVE A SUPPORT SYSTEM MYSELF AND YES IT GETS LONELY, VERY VERY LONELY BUT YOU HAVE BECOME A PART OF THE BEN'S FRIENDS FAMILY. I AM GOING TO SPEAK FOR MYSELF BUT I KNOW AND UNDERSTAND WHAT U ARE GOING THROUGH. SOMETIMES I CAN DOWN TALK MYSELF BECAUSE SO MANY OTHER PEOPLE DO ALREADY. JUST THE OTHER DAY ONE OF MY SO CALLED FRIEND SAID THAT I MIGHT AS WELL KILL MYSELF BEFORE THE LUPUS DOES AND SHE STARTED TO LAUGH LIKE IF IT WAS FUNNY. SO I EXPLAIN TO HER THAT IM NOT GOING TO LET IT GET THAT FAR.
I WAS DIAGNOSED WITH LUPUS AT 7
HEP A @ 14
POSTERIOR SCLERITIS AT 21
Pseudotumor cerebri AT 21
AND NOW IM WAITING ON MY BRAIN BIOPSY TO SEE IF I HAVE MS.
SO PLEASE KEEP YOUR HEAD UP