I cry everyday. Alot . I cry when I worry who’s gonna pick up my son today, my leg , because if I have to do it I gotta give myself the whole day to prepare. I cry when I’m struggling with one of my kids, because I can’t seem to hear what they are saying, between the lights above my head and the noise. I’m so confused. I cry when I struggle to make dinner cause my hands hurt. Damn I dropped it gotta start over. I cry after I lay down at night because I need a hug. And I miss my husband… But he’s married to someone else now…
I love this site. On this site you are allowed to vent. You can expect support. This site gets me through some of the worse of times. I am so sorry you husband didn't stay, but as Steve Harvey would say, "be thankful he left, because now the one you are supposed to be with can come into your life." You need to talk with your Dr about depression and talk to your Rhumy about maybe changing your meds for pain.
Good Luck. You will be in my prayers.
I agree. You must dwell on the good. You are alive. Your children are well. You are loved. I believe that everything happens for a reason. If you have faith in God you can make it through anything. I was diagnosed with lupus in 2006. Lupus is not who I am. I am praying for your health and strength. Be encouraged. You will get through this rough time.
A pity part is exactly what I was doing… I had just seen my ex. He is my oldest friend. We were talking about where we might be if we knew what was going on. He kept saying " I thought you just stopped wanting to do things with me. I thought you were sick of me!" At the time, why would we have attributed headaches joint and muscle fatigue have to do with that weird rash? I’m just so mad at this. It just keeps taking and taking… Summers coming and I don’t want to he left behind anymore
There are days when I feel like crying too but we have to be strong and believe in ourselves because no one else is going to do it for us and not many people understand except those with the same issues… So when you want to cry think of something happy like you have kids… There are some among us that can’t and I could be one of them. I try to be thankful for what I do have in my life. Yes we all have our moments to have a pity party but you have to look past it and realize you’re alive and you are loved!!
I hear ya girl...I send you lots of love and hugs. We will make it through. You are strong. You are brave and tears are your badges of honor because despite all of it you get up every day and do it again. You are so much stronger than you think.
Dear Annie : That was me the first two years of being diagnosed. I was so scared of living like that for the rest of my life. I was desperate and soon enough I realized that people around me got really tired of my complains. The more I complained the more lonely I felt. The empty look people gives at you without saying a word, a polite way to say I am sick of listening to you.
I started researching about alternative medicine almost right away, diet, lifestyle changes, oxigen treatment, and more. Then I found a book of a woman that claims she is cure after been diagnosed with Lupus by the Mayo clinic. She said she did it with diet and all that. I read that book over and over, I started the diet and everything she said; with one exception. I coulnd't stop complaning and I couldn't just accept it. I knew the mental state of mind was vital but I just couldn't change it. The diet and all the changes did a lot of good, but the major change came when un event in my life took my mind off of Lupus. I still have lupus ( and sjongren syndrome) I struggle every day with the diet and mild symptoms that remind me that I have it but I learned to stay focus on life and positive things and most of all I try to keep my mind busy doing things that I enjoy. Take lupus out of the center stage in your life and you will get better, maybe not cure like that woman, but there is a lot you can do to help get better. wish you the best!! love to give you the name of some books to help :)
Sorry about my broken english
Annie, I feel for you and I think it’s great to share your pain in such an honest way (I didn’t read desperate pitying in it, just acknowledgement that you are truly feeling that pain and not coping well with it.) It’s great to express it, both to help you confront/accept it and to find the wisdom and support of those who respond 
It’s true that crying a lot, a lot more than you’d expect, is a sign of depression. Being so in touch with your feelings/reasons for crying, rather than flat and detached, sounds a little less like depression. But what you said about not being able to hear your children, lights bothering you, and confusion, suggests you might have some neuropsych lupus going on, and depression often comes with the territory. Definitely talk to your rheumatologist about all these things! And probably psychiatry and/or counseling (depending on what’s recommended to you or you feel is right) would bring some relief. Definitely seek support, from here to express yourself fully and get ideas, and in your community for more of the practical support. That’s wonderful your former husband is so caring and your true friend. Ask for his help in arranging a sustainable solution for the kids. It truly is heartbreaking for the relationship to have been damaged when you didn’t know what was really wrong, but I’m very glad the friendship lasted. There may be a wonderful new life ready for you at any moment, when you least expect it. It may be you on your own, like many of the strong women here who have found their independent happiness. And it’s probably going to start once you can find acceptance for letting the harsh realities exist but motivate positive action, not let your reaction to them drag you down.
There is a wonderful book I always recommend for this: Toni Bernhard’s “How to Be Sick: a Buddhist-inspired guide for the chronically ill and their caregivers.” It’s a wonderful treatise in finding centered resolve to thrive. The author is so debilitated by her chronic fatigue syndrome that she can’t even attend meditation retreats, just about the mildest thing you can imagine! And she of course lost her career as a lawyer and professor of law before that… But she finds her meditation from within her isolated existence (albeit with a dedicated husband, but the power of her methods would extend to those doing it on their own too!)
Great to hear from Ann A. again! It’s been a while… She always has just the right thing to say, from her bank of many life experiences over years of triumph
its been one year now with lupus, and it is still hard for me to accept and swallow the fact that my life cant be the same as it was before.. Ever.! I can very well understand how hard it must be for you in this situation. But do not give up hope and strength. You are the source of inspiration for many.. specially your kids. they would understand and admire you for who you are and what all you did. stay strong.
Dear Annie, I agree with what everyone has spoken to you of about the depression and even found myself in the same boat. The process to come to terms with Lupus can be quite overwhelming. You feel like you are going to lose everything to this awful Lupus- but you aren't. Coming here helps a lot for me, but perhaps you should see a doctor and tell them how you have been feeling. They can provide you with tools to help you work through your feelings and even get back on the road to a life you can feel better about. It's ok to cry and feel sad. I think we all grieve over who we were 'Pre-Lupus'. But you know what? We all evolve and with help you can too. I feel like you are strong in many ways because a) You are a Mom: this is not an easy job and b)You are honestly sharing your feelings: again, so many struggle to do this when they need to. Just remember, you are living with it- it's not who you are. If you want to vent, do it. If you want to cry, do it. You can come here and we get it. I send you hugs and prayers. I really hope you find what you need to feel better than you are.
Ann, idk, maybe? He is overwhelmed now with regret of what would be different if we knew. Between hiding out from sun and migraines. I pushed him away a lot. Not until my recent diagnosis did we even know that depression plays a huge part. He’s being so supportive now I can’t help but wonder. Friends are few and far between. And he’s the only one who SEEMS to have my back. Pays for everything for me. Bills, rent…hindsight is 20/20 and I don’t want to be alone… I know I’m whiney this last week( maybe new meds). I gotta get my head together I know. I am greatful to have all of you. Perspective you know? Crazy I had to get a diagnosis for him to care what was happening to me?
I met my husband when I was 17 and we have been together ever since. Last summer for the first time ever, I saw him drifting away. we had fights and rough times before but this time it was different. I panicked like I never did before. But it was good because it helped me to snap out of the victim into a pro active attitude, not because I am courageous but because the alternative was even more scary. What makes it worse is that he knew I had lupus so at first I was so disgusted at his behavior, then I understood that only a situation like that would've snap me out of my way of copying with lupus.
I met him at 17 also. I’m 45 now. I grew up with him. We grew up together. The friend role is important here. I took my friend for granted, too. Forgot to try and understand what he was dealing with , a cranky depressed always wanting to be left in dark silence wife. Not all the time. But for weeks at a time. I mean like you said ups and downs and he had his moments too, But I’m seeing things now like my damn kitchen light. All wrong over my head track lighting. All the time I spent under them. I used to yell every time he flicked those on. And he didn’t want to talk in the dark
Lol. Sighss
You know I just realized that it was not only that I complained like for instance because I couldn't stay in the sun (me! who adores to stay in the sun) it was my attitude towards it that chaced people away. I was cranqui and in a bad mood. I still have to stay away from the sun, I walk with un umbrella everywhere, in and out of the pool on sunny days I have my umbrella with me and lots of sunscreen but I have a smile again.
I was lucky enough not to start with hard medicines and always tried the diet first,( I do take Hydroxychloroquine) even when the situacion was a desperate one. My doctor, who I am so thankful for, is the first one to pop the prescriptions as a solucion to my symptoms. You should've seen my attitud when I started the "damm diet" as I call it; I was not a nice person to be around.
I read a story yesterday about two guys that were affected by the earthquake in california and they had to drive four hours to go to work. One was misserable and complained non stop, the other one said " I take my music and my audio books
with a nice hot coffee with me !"
I learned that you have to put out what you want to come back, I wanted hope but deep inside I was hopeless so I felt misserable no matter what they said to me. I guess is because it was easier than to do something about it.
Maybe tomorrow I will have to take a lot of medicines with all those nasty side effects, and maybe diet is not a "solution" for everyone but I l know that it ease the symptoms a lot. It takes time, is not llike medicine, but it does work.
Two months ago I had a bad spell of Sjongren and I had to spend a fortune on the dentist because the luck of saliba made me loose a few teeth, not haveing saliba was one of the worst symptoms of all, I thought I was going insane.
So I went to the doctor for medicine but this time I took it, two days later my mouth was fine but I was dizzy and I had a headche as side effects. So I stopped the medicine and I cameback to my diet that I had stopped because I was feeling great and thought I could take a brake. As you can see I feel very passionate about this diet, and is because it changed my life for the better. It is still hard to do but I am thankful that I found it and it never stops sorpricing me how little people believes in it. :)
Love to know about that damn diet.lol
Oh Ann. You are right gotta do me NOW. I didn't go there, cause I could never. Girl code even though she didn't deserve it. And the light is still there but disconnected. Ultimately he's married NOW and I won't be a priority. So I should not set myself up for disappointment. First time on my own and I'm clinging to a fantasy. I have faith and Know that God has his plan. I just get lost. All this time alone and I can feel my mind wandering again. I fear I'll never have that closeness with another person. I just got through screaming at him for abandoning me and to leave me alone. I'm letting too much drama in.
WaSH truth always does. Very close to my boys, they are asleep by 9. My daughter is a different issue, They are my distraction. I’ve been struggling with my demons. I used to read. Can’t concentrate. Used to dance all the time. I have a theory that its impossible to dance and be sad. But lately I can’t do that. That’s been a hard one. I danced all the time. Focus I have to focus on the positive. I Want to. I do. Idk maybe I even focus on him so I don’t have to look at myself…
Xoxo