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Thread: more sick than ever, and isolated

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    Default more sick than ever, and isolated

    i was diagnosed in '93, and have been through so much, but now, things have become so much worse. i really need support from people who truly understand. we all know that the only way our loved ones could 'get it' is if they, too, became ill, and who would wish that?
    i've been wrestling with this disease for so long, and as time has marched forward, have been diagnosed with all the side stuff; fibromyalgia, chronic fatigue syndrome, sjogrens, raynauds....on, and on, and on...
    also, i am on ssi disability, and so have sub-standard healthcare and am BROKE FINANCIALY.
    BROKEN IN SO MANY WAYS.
    BUT, i don't want to give up, not in the least!
    now, however, the drs are really trying to push the newer meds, which, historicaly, for me, is a VERY bad idea. i react to most everything badly.
    i guess i am depressed. i'm feeling hopeless. i feel i'm not a good mate; chores, tasks, errands always seem to land on shoulders other than mine.
    i feel pretty worthless.
    my last ana was too high to be comfortable.
    a new doc wants to put me on plaquinil, and it's been so long since i was on that, that i forget why i was taken off of it.
    help...!

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    Hi OHMEOHMY,

    Don't ever feel worthless.
    You are lucky to have "shoulders" around you, where chores ect can fall on.
    I know, that you don't remember why you were taken off the plaq, but maybe that is the reason that you feel so bad.
    Hopefully being back on the plaq, will put you in a better place and make you feel much better.
    I am glad, that you say, that you won't give up.
    Come here and talk to us, we are here to pick each other up and give each other advise, or just listen if you have to vent.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Hi Ohmy! I am so glad you found us and I want to officially welcome you to WHL. You are NOT worthless! This is such a crazy disease and I know that it makes you feel so alone but I promise you are not. We are all here for you. We do the best we can and that is all that we can do. You can't help how you feel and you can't take it personally. It doesn't mean you are not a good person it means that you are ill. I know it is difficult but eventually they will find meds that will help you.

    As for the bills? I know this sounds bad but don't worry about them. I never thought I would get there but I can't worry about bills that I have no way of paying. My mom had a saying "they can't get blood out of a turnip". Let the bills come and just file then in a drawer until you can do something with them. I know this is not the answer that I would have given when I was healthy and working but it is the answer I give now because now I can't have more stress added to my life when there is nothing that I can do about it.

    Debbie is right. Let them put you back on the plaq. That may be why you are flaring so badly. Come here to vent. Yell, cry, talk, laugh whatever. Here people understand exactly what you are going through and we are here for you
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi OHMEOHMY,

    I'm Rob, and I've been living with SLE since my diagnosis in 2004. I think going back on Plaquenil is a very good idea, and I'd be willing to bet you will notice a beneficial effect from it again once it kicks in. I am on disability too. There are many chores that I often cannot do, and my 73 year old father ends up doing them for me usually. I told him that I should be the one helping him at this point in his life, to which he gives one of his practical down to earth responses-"Well, son, you have Lupus, and I don't. Don't worry, it's no big deal." He does not mind helping me at all, I wonder if the people in your life may feel the same way.

    Like you, I've had to deal with feelings of worthlessness, and a loss of hope for the future. The truth is, we all have an inherent worth, even if we can't always see it for ourselves. You have been living with Lupus since 1993. Your life experience of living with this disease for 17 years is priceless to other people with Lupus, especially the newly diagnosed. I for one, am very glad, and very grateful that you decided to bring all of that experience and all the other good things that make you who you are to our group here.

    Have hope, we all still have plenty of good days ahead of us to look forward to despite this lousy disease.

    Welcome to WHL,

    Rob
    Last edited by rob; 12-15-2010 at 08:43 AM.

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    Hi OHMEOHMY,
    Welcome to the WHL and we're such a large family always ready to help and give advice.
    I've had SLE since birth but it was only last year they finally diagnosed me and like yourself i'm realy tied out my hubby does alot for me now and all i do his keep check on the home and that's spread out now till i feel mentally up to it.
    Although you can't remember the plaquenil to good, go for it. I've not been put on anything yet oh they've offered steroid jabs which i've refused to take to take the inflammation down and i have steroid creams for my skin which i do need but i'm waiting for january to push my rheumo Doctor into giving me plaquenil as it's not a steroid as my body does'nt react very good with them and if it was'nt for Rob telling me about it i would'nt have really known but at the end of the day your ill like we all and need help and you've joined an excellent site for chatting and letting lose on how you feel.

    Terri xxx
    Last edited by Peridot_Gem; 12-15-2010 at 07:48 PM.

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    OhMeOhMy,

    First of all - I love your name! Sounds like you have a good sense of humor just in the selection of your name. Second, WELCOME TO WHL!!!! I'm so glad you found us. Many of us have dealt with depression associated with our illnesses at different times and it's really no wonder you are dealing with it now. It's all so overwhelming at times and now you have to deal with a new dr who wants to try new drugs that you routinely know will cause a new problem. I'd be a little depressed thinking I was going to have to start all over again with drug therapies too. The good news is, here we understand you. We have walked your walk and wear the same shoes so we get it. Come back and check in with us again as often as you like. Let us know how things are going with the plaq. And go to the arcade. There you can blow things up and run them over and just get rid of a little frustration through the games.
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    ohmeohmy welcome to whl i know it can be hard having people help you but i have learn,t to adjust my motherinlaw who is 80 helps me because i am often to sick but she wants to hope the plaquenil kicks in soon this disease gives us all the moody blues so you are not alone we are all here for you when you need to chat hugs kim l

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    ohmeohmy love your name sums up how alot of us feel at times.
    I've lived with this disease for 40 years and there's been alot of times where its become overwhelming not knowing why my body reacts the way it does.When I was diagnosed there were no other known cases in NZ and the only info was from an old Med book - not helpful only gave like a 10 year life expectancy - here I am 40 years on and with a family which I was told I could'nt have. This site is the first time I've found supportive and helpful company. Like you the family try and help, my husband is a wizz at housework thank goodness but unless someone walks in your shoes they'll never really understand. Try the Plaquenil I sure as Rob says once it kicks in you'll feel much brighter, I've never had Plaquenil I've been on Pred. all this time , now my Rhemy has me on methotrexate trying to reduce the Pred says 40years way to long on Pred. Don't sell yourself short we all have something to offer and I'm sure talking to others on this site will be a huge step in helping. I've never used a Chat room till last night and enjoyed some great banter with others late last night(Aust time) when I could'nt sleep. Mind you that was day time American time so tgal etc were wide awake .
    Remember if we can be of any help you only have to ask some one is always willing to helpin this WHL family
    Lol Merrilyn

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    Default thanks to everyone 4 support...

    it IS really great to be in touch w/people who can understand. due to the responses, i've gone ahead and started back on plaquinil, and am hoping it will help.
    an issue for the last several days...want to know if this sounds familiar to anyone, (and also asking because OF COURSE can't reach my new dr.) :
    alot of extra inflamation all over, i can feel it in my whole body as extra pain, extra stiffness, and all around my eyes is visable swelling, even my eyelids are swollen.
    could this be the sjogrens, or kidney involvement, or just another inexplicable funky zig or zag that lupus likes to 'suprize' one with? it's comforting to have found this site, and i hope i will be able to help others as i have been helped.
    THANKS ALL!

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    Can't comment on the swelling, but I know there's someone who'll be able to suggest an insight for you. Good luck with the treatment!

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