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I just need to vent..and I have a few questios...t
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I just need to vent and I have a few questions. I’m so tired of having this disease( LUPUS) no one understands what I’m going through especially my family and friends. I tried to talking about my symptoms to them but I feel like they just don’t understand. In the summer time I’m worse and I feel like the older I get the worse my condition gets. The only person that I really wanted to talk about it that had this sickness was my aunt but she passed way from complication years ago of Lupus but she was a strong woman that didn’t want to talk about it even my grandma or anyone else didn’t want to talked about it. I need someone that knows and willing to talk about it. I have no one ,I feel so alone sometimes I feel like jumping off a bridge and just ending just think no more pain and stuffer who needs that and there like if they already stressed and depressed from other issues but some days I feel like I can’t give up my mom love me t.oo much I can’t image her seeing me 6 feet underground.
Anyway, I went to the doctor’s today I just feel like my dr is not understanding what I’m going through. My body doesn’t feel right but she doesn’t think it’s nothing serious. I feel like I have to be half die for them to get their attention, does anyone else feel like that? I don’t know what to do half of the time I feel so alone and too tired explain myself. I’m single however I was in a relationship a few years ago and before was got serious I told him I had Lupus, at first he could handle it and month went pass I could tell he couldn’t understand me so I had to pretend when i wasn’t sick and tired but that didn’t last too long since we broke up. I have to admit I did love him but I don’t think he love me. Nowadays when I tell men that I date what I have they run away because they don’t want to deal with a female that has a sickness and it truly hurts my feelings because I know I’m a caring and trusting person that’s loyal, so what do ya’ll think should I tell him man when I first date them or should I wait for a few months in the relationship? When and how did ya’ll loves one???? Posted on 08/02/12, 03:21 am |
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Your not alone. We all have days we fell like that. Hang in there. You have to make Lupus live with you. Otherwise it's too easy to succumb to its clinches on your life. Mental attitude is so important when living with Lupus. Live your life the way you want and just put it in a place. Yes you'll have flares, yes you're gonna have crappy days. But don't let it define you. 
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I agree with LeeEllen. We all have our days like this and you are NOT alone. If you feel your doctor doesn't listen then find a new one that does and will listen to you! Also, ask them for medication for depression. With everything we have to go through and deal with it is normal to also have depression.
Hang in there and post here often with questions or just to let us know how you are doing. I've been dealing with Lupus for 18 years and you will have your good days and your bad days. To be honest sometimes it seems the bad days out number the good but you will learn how to manage the disease and not let it control you!
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I am so sorry for the way you feel. It is hard when people (especially ones close to you) don't understand. Go online and check for a Support Group in your area. Also, contact the LFA (Lupus Foundation of America) and they can help you find support.
I will keep you in my prayers. Just like LeeEllen said, Lupus is NOT who you are. Take care and I'm sending many hugs....Va. Ann
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It's taken me years to get my friends to understand. They are kind to me but in a lot of ways they'll never really get it. I agree with the woman who suggested changing MD's. Do you have a Rheumatologist? I think if my own MD didn't understand, I'd be next to you on the bridge. Then I'd make you laugh though and we'd go get something good to eat...like french fries. The bottom line is that we have a relentless illness that doesn't "show". It's an illness that strips you of a lot of things unless you have great luck.You have to find strategies for dealing. I was so sick and lonesome yesterday that I literally went through my personal datebook and picked a friend I could call. I live in upstate NY, she lives in California. Still, she gets it. We talked for a long time and at the end I felt like I wasn't so alone in the universe. My hands hurt too much to type anymore but we will be here for you and we get it. As for new relationships...I'm a lot older than you are and most of the time, I just don't care.
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you are not alone for sure... I think we have all felt that way. It is very isolating to have a chronic illness like this. My husband is really great but I can tell sometimes he is tired of hearing about it. I do the same thing where I pretend to be fine beacuse I dont want to see his disappointment.
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Thank you all for your support. I really needed to vent and I needed to talk to someone that has this disease that knows what I'm going through, yea I might be a lttle depressed I should talk to my doctor but I think my pride gets in the way.Ahh I don't know you this had to happeded to me--I know all of ya'll ask the same question..
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Actually I have never asked myself why. Because that's an unanswerable question. I just know that it is here. I have it. And I have to deal with it. It's ok to be down and I've been mad at myself for not being able to do what I used to, for sure. My kids always called me the tornado. I was the mom that could juggle three kids' schedules, volunteer and work and be a military wife and still have energy left at the end of the day. It's hard for them to accept that I've probably dropped from an F5 to a micronburst but I'm still the same mom on the inside and that's what counts! Look forward. It'll help.
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I hope you get the support you need....we are ALWAYS here for you. Lot of great advice and words of wisdom replies..
Take care {{HUGS}}
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