it's my wife

[dee123]

hi, sorry but i don't know any of you, but my wife is known as dee123 on here, yes this is her husband as dee is in bed, i know she posted something last night regarding her kidneys, and today she is still in bed due to pain in her shoulders and ankles, she also has got pin and needles in her right kidney and is realy tearful no matter what i do or say seems to make a difference, she is not eating only drinking water, we only got married last month and she feels like she is letting me down, i have told her that she is not letting me down, i love her so much and don't like to see her in so much pain, she is at hopsital tuesday for blood test so she has had no medication for nearlya week now as derm specailist to her not to take it as he wants a true reading of bloods etc... she is stil getting small red blisters on hands and feet do you think this is linked to the problem with her kidneys,
i shall be ringing dermatolgy up tomorrow to speak to someone there as i have tried to ring the doctor but he thinks it cos sheis off med's at mo, right now i can only take his word for it as i am no medical expert and dee and i still really know jack s*** about lupus, and the effects it will have on her..
well sorry for going on but i really don't know what to say right to dee, i have never seen her so low and extremely fatigue'd..
thanks you lot for listening to me moan, take care from dee's hubby
this is for you all


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[hallenville6]

watch for dehydration & fever If you have to carry her to the ER style_emoticons/<#EMO_DIR#>/sad.gif She might be flaring!!!

[dee123]

i think she is starting a flare, she got few more lesions on her legs,

[hallenville6]

going off her lupus meds might be why she is flaring, it could be anynumber of reasons. If she has a temp 100 or more & mouth is very dry carry her to the ER or call 911 lupus flares sometimes also seems like flu symptoms also. As far as the kidneys I have not experienced that to tell you anything there unless another lupie responds. I would if it were myself I'd go to the ER soon as possible

[pennylp]

Hi there,

It must be frustrating and scary for you as you do not know what to do to help your wife.... As long as she is drinking fluids she should not dehydrate... eating is not as important.. I know I have not been eating a whole heck of a lot for the last week but I drink a lot...
The doctor is more than likely right she is off her meds and that will make her feel pretty bad.... If she doesn't get any better or she gets worse then I would consider the ER....

Dont you ever worry about coming on here and venting... This is a support site... WE all vent and we all listen to each other... That is what helps us get through our days and nights when we are feeling horrible....

Take care of you and Dee

Love Penny

[lin]

Hi dees hubby, i think as you live here in the uk, i would ring NHS Direct and speak, or get the GP out,,
it would put your mind at rest a little more,
,,,as yes everyone here can listen to us, but cant tell you what to do
it could be anything
,
I have blood test but they dont stop the meds, they just write..... pred and AZ on the drug card ...sorry this is happening to poor dee, please let us know how you go on


so nice to see another understaning hubby bless .................. take both of you LIN xxx style_emoticons/<#EMO_DIR#>/hugbetter.gif

[angie1]

Hi Dee's husband,

What a caring partner you are! I agree with the other ladies. It's better to be safe than sorry with this disease.
You and your wife have a great support system with this site. Take care and keep us all informed.

Angie style_emoticons/<#EMO_DIR#>/hugbetter.gif

[BethannUK]

IN addition to everything everyone else has said- go put your arms around your wife. KIss her forehead, wipe her face with a cool cloth, kiss her nose, make sure her socks are comfy (nothing is worse than being in bed with twisty socks), fluff the pillows... let your heart talk to her. Even if you cant sit with her because she hurts, just be with her, move the hair out of her face. Ask if there is something you can do to make things better, --For me, my husband will wash my feet, rub them and rub cream into them- he does it with such a smile on his face- he is really joygul-- and it really does make me feel better because I can feel his love. He will also brush my hair when I cannot do it aone. I can accept it because I dont feel like I am just taking- he makes me feeling like I am sharing. He said to me once " I know it feels to you lke you are asking too much, but it feels good to me tobe able to touch you!" SOmetimes, she might be so low that it might seem like you are talking to a rock and you might not get much in response from her, but you will prevent her from convincing herself that you dont really want to be there.

Find things you can do that mean you will be in the same room- dont leave her alone all day. Sometimes its good to be alone so you can rest and sleep,other times you dont want her to be alone- in her head yshe will think "If I were well I would be with him right now... but i'm not".. Grab a book, your newspaper, and set up camp with her. OIf she says "Why are you here?" Say, 'There is no place I would rather be than with you." You dont have to talk or do anything.

You have a lot of insight about your lack of understanding about lupus and medicine, but you know dee. WHen I get bad my hubby will read me poems from Old Possums book of practical cats... he hates it, I know it, but he knows I love it. What kinds of things could you do that would let dee know that you arent going anywhere? What does she enjoy that you could share with her that wouldnt take anything out of her?

YOu have the best medicine on offer- your love her- the love only you can give- ishe has an image in her head of how a new wife should be and she is afraid she is going to scare you saway or over burden you.

If she means more to you that than- and If you believe and feel it, then find ways to include her in day to day life even when she is in bed. Go rent a video that she would like to watch. Offer to brush her hair- let her know that you love to touch her and be near her in any way, not just those other special kinds of ways. Remind her that it makes you feel good to comfort her. Rally her friends, let them know she needs alittle extra love and attention. Defend her from the idiots who thinkn she is making too much of it or is putting on. Get your family to come and help, too.Send her flowers. Write her a poem. Leave her little notes. GIve her hope and let her know you are in it for the long run. If you start get tired and worn out, take care of yourself before it gets to that point- be honest with her about your own needs, too.

Find out if she can handle being touched (just being held can be painful), and hold her and kiss her. You cant fix her body; but you can make certain she knows that you married the beautiful and wondeful person that she will always be, no matter what the outside is. SHow her that is makes you feel good that she can need you can you can be there for her.

She is lucky to have you. She knows that. The way her luck has been going lately, can you see why she would be worried???

[dee123]

hey,

just want to thank you all for litening to me winge and the advice you have given me, dee is now a sleep but how long for i am unsure, i think i will ring nhs direct and see waht they say, i know dee has some one to talk to about the condition and that is really comforting to know, as i am unsure to what to say to her half the time as we are still coming to terms with this disease, i know she had running with her boss about the length of time shehas ben signed off sick not that long really(3months)...which i know will not help with a flare.. well once again i thank every one of you for been there for dee(and me tonight)
take care all
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Dee's hubby Ian

[halfpintfl]

style_emoticons/<#EMO_DIR#>/jump.gif Hi Dee's hubby, how nice of you to come here for your wife. You said that all
she is drinking is some water. If she is having a flare and staying in bed, get her
some "Ensure" drinks. They are sold at drug stores and grocery stores. You
can get them in vinilla,butter pecan,choclate, strawberry, what ever she likes, they
are small , but they taste like very thick milkshakes, and they don't have to be refridgerated.
Drinks at room temp will be easier on her. Ensure is made for people that are not eating,
its full of all the neutrients etc that she needs. Keep those on hand anyway. If she doesn't get to
see her dr. today, then , yes, I would take her to the emergency room. Best wishes.


Be well and keep us posted. style_emoticons/<#EMO_DIR#>/cool.gif