Frustrated

I have been living with Lupus for the last four Years and four years is what it took to almost destroy my marriage. I had it in my head that I don't need counseling or coaching and nobody needed to know what is going on with me. I stopped communicating with my Husband about my Pain. And the only way he would know that I was hurting was when I was being mean and nasty with him. And of course he would say things like DID YOU TAKE YOUR MED'S TODAY? and that would put me over the edge and make things even worse.( I want everybody to know my Husband is amazing and put up with allot of well you know what)
Two months ago my Husband asked for a separation and requested that I take myself on and get some help. I hired a Life Coach and went on a mission to safe my marriage and myself from further destruction.I have called every member of my Family and every friend I have, to apologize and to ask for there support. I was so amazed at all the support I had denied myself.
My Husband is back and I am so happy about that. The reason I am sharing this , I want everybody with Lupus to know that communicating your pain and feelings to your friends and Family is key to having less flare ups. I am no longer mad at the world and I have the support I need. I believed letting people know about my pain would make me look week and I have learned that it is quiet the opposite. I am now empowered and have a sense of freedom.
Love and happiness and of course no flares to all of you

Hi

My husband and I will be married 1 year in March. He had  a heart attack right after that, he asked me if I still wanted a broken down old man and I reminded him that I said in sickness and  in health. He has to take plavix and all kinds of meds.

So when I started having problems, I reminded him that HE said in sickness and in health. And even though our lives together are still very new, we have vowed to stick to one another to the end. So I've got me a good one. Oh we do have our bad days, but the making up part is fun.

I also have the support of my family, which does make a world of difference. But still have those days where I think I complain too much. Bless my mother''s soul, you know how mothers can be, she's always trying to doctor me up. That's where I had the ? about too much vitamin C. She's going with me to my next appt, just hope she doesn't start whooping on this dr. She's said that she doesn't like him for not taking the time to listen to me.

Dear Staci,

I am glad that my Story inspired you. I have learned that every once in a while it is important to give our loved once an opportunity to tell us how it is for them to live with Lupus, because they are too living with it.
I did that with my husband and he had lots to say. My job was to just understand him and not criticize. I know for myself, when I was DX I became very selfish and everything became all about me and people around me ended up resentful but pretended that everything was ok. It all spills over in the end and instead of healthy conversation you end up not communicating at all. So what I am saying is give your hubby the opportunity to express his feelings and his needs and I promise you he will have a new listening and understanding for you. Hope this helps.

Best regards
Christine

I just wanted to check and see if any of you Lady's live anywhere near San Diego Ca. The reason I am asking is I would love to form a womans group that perhaps gets together once a week to have some fun. Not your usual Support Group. But going out for a meal or a Movie or playing Cards. I stopped doing lots of fun things since I have had Lupus and I really want to get back out there. Anyone In???

dear german lady............i live in san pedro, which is a fair drive from u & that is too bad.......i don't know if i could do anything like go to a movie, sitting a long time in one position bothers me, but a meal would b nice.........i use to live in escondido, which would have been much closer.......

i know about sharing with ur husband..........i get after him all the time about keeping things to himself "cause he doesn't want to *****"..........but he always feels better when i push at him.........i tell him most everything........i was recently dx, but i debated telling him everything all the time, cause, god as my witness, i married my mother...........she was such a worry wort & always carried those worries to the very ugly end........my husband went off the deep end right away.......he's in iraq as a civilian contractor, he drives trucks for the army.......he was coming home, NOW!........but that would have stressed our living conditions & that would stress me......i take care of the finances........besides i'm not on my death bed........that just calling alot & letting me tell him how my day went was all i really needed........i told him simply, i will not allow him to bathe me, dress me, feed me, he's a terrible cook & i'm picky, is about all he could do for me & the rest i just have to b quiet, calm & lie down & rest.........if i was dying, that would b a different thing altogether...........we had been living with this thing for 8-1/2yrs b 4 it had a name, so the status quo is good for me.........he's happy driving strange places & i am ok alone.......i have my grandkids & kids when i need family around on short notice..........

so that's how we deal..........different strokes, u know??..........chris.........

Hi German lady, My name is carol/ I just wanted to say hi and welcome you to the group. Most of the people I talk to are from here. They have taught me a lot. They have a lot of compassion sometimes I feel bad that I don't have much to give back. I have lots of family but they put the FUNK in dis FUNK tional.  My husband went to heaven 10 years ago so I'm not real sure where that is so we don't get together much and my son (who was in Iraq) 03/04 lives in idaho. which is about 1000 miles from here, well we don't talk a lot either but at least he's in the states. Last year really stunk living with my relatives trying to get money to get myself a place. I finally got my own place the first week in dec. Not everything is peaches and cream but I have a choice as to weather I am going to let it ruin my day or not.

I really wish I had someone somtimes, to snuggle up with and be the big strong person that is going to make everything ok but I ain't holding my breath.

I think the counseling is a real good idea. Mostly because if a person think that their (partner) is going to fix everything they will be disapppointed. Not to mention it isn't fair. Half the  time I'm not even sure why I'm mad but I expect somone else to fix it for me.

Most of the time I am not thrilled about being sick but once in a while I think my life is fuller because of it. Some times the sun looks a little bit brighter, the music is a little bit sweeter and the hug from the grandkid last a little bit longer. well anyway I could go on but fortunately for you I'm gonna shut up now. lol.

again welcome to the group I hope you enjoy it here.

carol