I have not been on here in a long time I hope all are well I am Krisdy from the USA. I feel like I have alot of anger now, Is this Lupus????

[krisdy]

I think i going crazy

[Natura]

Thought it was very interesting that one of your tags came up as HOPE... I am working on this every day. I feel the same way you do. It can get to you after awhile. I had a breakdown with my family yesterday. It was terrible! I want to just run away so as to not hurt them anymore. I am from the USA too...I hope you feel better...Hope, faith and prayer.

[krisdy in reply to Natura]

I hear this from so many Lupus patients, I think we should all be put on our own private Island. I tell people that I have 2 fzriends now, and there names are Phoebe and Ursala and they dont bother me about my lupus, I have multiple personalilty disorder (not really) but everyone thinks I am crazy anyway so Its like the only people that laugh or understand are people that have this illness. people that have cancer they dont get treated like this. I will never understand why I must repeat myself everyday for over 6 years about what lupus does.

[Natura in reply to krisdy]

I have only been recently diagnosed (a month ago) and I am already tired of explaining. I don't explain anymore. I love the "spoons" story someone posted. I give my own short version to people when they don't understand. Or I just don't even talk about it. Unfortunately, I am starting to want to isolate myself more when we really need people to support us but they don't seem to know how to help. My husband has left all the home and children stuff to me for 15 years and is now getting up to help. I think he sees my breaking down. I am sad that my girls have to witness me like this. I try so hard to be positive and happy for then...very, very hard... We care here...post when u feel bad. I do.. It helps to hear others with the same pains. ..emotionally or physically...

[krisdy in reply to Natura]

thank you Natura, I know its like the only people I can get support from is if they have the illness. I also found out that its about 90% of all lupus patients that there partner or spouse leaves them, I dont understand that at all!!! I try to isolate myself too. because you start to not even want to be around them to hear what is wrong with you. I feel like I am in a display case and everyone starts to pick at me. Why is this for lupus patients

[Natura]

Krisdy...we can only do the best we can. My husband is still with me, but he is very unusual. He sees the good side of me and is calm enough to handle my breakdowns. He calls me crazy, but says everyone is crazy. He is right. No one has a perfect life, and everything together. If they look like they do, they are pretending and lying in some way. If everyone could just share their pain in the world, we wouldn't feel so unloved, or odd. I struggle with this every day especially since my grandmother was institutionalized for 45 years with melancholy as her diagnosis. I still feel I don't deserve to be loved because I am so whacked with my over emotional self. I am highly sensitive, and always felt like I didn't belong anywhere in this world. Now I am struggling to find a way for my two highly sensitive daughters. So so hard...my husband said he met a woman on the job that helps highly sensitive children through daily exercises of yoga, meditation..I definitely need help.

[overnighthearingloss]

Its a sad fact that others who are not sufferers have difficulty fully accepting just how ill we can be when we often are told how well we look.

A couple of days ago I was really ill and body so racked with pain I couldnt take my evening meds as I couldnt get up to get them.

A couple of days later and improved I decided it was time to get some overdue blood tests done. I get sticky blood and have to take warfarin. But I missed it a couple of days ago.

Today when I had bloods done my blood was as thick as jelly. My fella had said I looked better but when he saw the blood he suddenly realised that at least one aspect of me was different.

Not all lupies have sticky blood in addition to the other stuff. The point I am making is that someone seeing something physical can more easily accept that all is not right. When others who are unaware, are just unaware.

Steroid therapy can sometimes lead to anger as a side effect. I dont know if that is one of your meds.

It can also be anger as the way our lives are changing due to the lupus. I have experienced many changes. The way i deal with it is to tell myself that EVERYONE'S life changes over time. And this is just what we have to deal with, whilst others have different things.

You cant turn back the clock so we all have to find the best way to deal with the present and not to dwell too much on the ifs and maybe if they will make the present more difficult.

Its not for nothing that its said that youth is wasted on the young