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hello all, my wife was just recently diagnosed with lupus. she is 43 and we live in new jersey. we have 3 children. my wife lisa, back in march started experiencing symptoms of fatigue, headaches, tingling in one side of her face and down her arm. she had always been a sun worshipper and up until 2 years ago went to tanning salons. she is 43. last summer she started getting ill when she went in the sun. she had chest pains and was taken to the hospital on a few occasions. she ended up with the "mask" rash on her face once as well. the doctors did tests, some said pleurisy others said nothing wrong. we now feel it was the beginning of lupus starting to show. when her symptoms started in march, she saw a new neurologist. a mri of the brain detected lesions. he sent us to a MS specialist who examined my wife. he said it wsnt Ms but for our neurologist to look into lupus and that we needed a mri of brain w/ contrast. since then we have been to many different specialists for all kinds of symptoms that are flaring up. kidney doctor for blood in the urine, pulmonary doctor for a chronic cough which may well be emphyzema (she had smoked for 20 years b4 quitting 4 years ago) , an eye doctor for blurry vision, cardiologist for chest pains, rheumotologist who currently has her on prednisone 50 mg per day (starting to ween her off) and plaquenil. her recent mri of brain w/ contrast alludes to the lupus being in her brain. we are scheduled to see her rheumotologist and neurologist this week. rheumotologist last time we saw her stated that she may admit my wife to hospital for treatment intravenously. we feel that she may do that this week as the lupus seems to be overtaking the current meds she is taking. she has a rash all over her body which a dermatologist biopsied on saturday. as you can see, we feel that the lupus is pretty well progressed at this point. we came across this message board and i decided to post. we welcome any advice, questions, thoughts or just words of encouragement that you may have. we realize we are in a real battle here, but if i know my wife, she isnt going to give into this. look forward to hearing from anyone. don:sad:
 

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Hi Don,

I'm sorry to hear that your wife at 43 has developed this disease. I can understand at this point a definiate diagnosis of any kind would be appreciated with all that she is going through.

I have to say as i was reading,, i saw myself. The hospital visits and doctors repeatedly saying there is nothing wrong and sending me home only to end up back to the doctors with yet another symptom.

All i can say Don is your a good man for posting your observations and concerns. Your wife will truely benefit from your attentiveness and empathy. So even though you feel like your not helping at all, know that as along as you go to doctors visits and take your wifes feelings and symptoms seriously, you are helping. Some times just being in the same room and not even talking is great deal of support.

I have seen every doctor your wife has except the neurologist. That one is next..
From one doctor to the next, things will fall into place... proper meds,, tests that give definate results.
It is going to be hard on your wife not being able to be the person she once was. Though she may get better than she is,, we all never get back to our old selves. Try and understand that this is like a death in the family and she will go through, if she has not already,, depression, denial, anger and try to bargain her way out of having this disease,, but in the end she will accept and learn that she has to redesign her life. It is not every day someone gets the chance to have 2 lives lived.

I'd like to advise you to make a list of all her doctors ,addresses, phone numbers and place them somewhere easily accessible. I have also made a medical card the size of a credit card with all my meds on them, so it makes it easier to distribute the information. Nurses will appreciate that. Then i tape it to the back of my insurance card. Lord knows we can't remember all the meds we take, let alone where we put the card.

It would be nice if your wife would come to the site and post her thoughts and/or experiences. She doesn't have to say much or if she likes she can say more than I am saying now :). Either way its an opportunity to get to know her and she can chat in the chat room and express herself. Talking about it and asking questions really does help.

Don i wish you the best of luck with your wife. Stay strong for her and know as long as you can empathize and take her seriously,, you will be helping.
 

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Don:

Welcome to you and your wife! I am sorry you had to join us, but know that we are a good group, and we will offer any support, advice or answers that we can.

It is good that they figured out what is going on and that they are treating the symptoms.

I was 43 when I was DX, my lupus is not CNS (Central Nervous System) but my husband is as supportive of me as you are of your wife.

All I can say is to go to the Drs when you can, so that when she forgets something you can fill in the gaps...also DO NOT be afraid to ask your own questions of the Dr. My husband asks questions that I haven't even thought about, he also mentions things I might not notice in my behavior or of complaints I have made and forgot to mention.

The other thing he does that is important to me, is he doesn't say no to things, thinking I can't do them...He lets me control what we do or don't do.

I give him time to himself that he needs...he's afraid to go away from home for too long like to play golf, which he needs, so I agree to nap and call when I get up.

All of this will come together as you both work through the health issues...we have no Kids so that will change things for you both...you will find your way.

She is who she always was...with limitations she never had before...she needs to know that it doesnt change who she is, just what she can do.

Good Luck - sorry this was so long - Stephanie
 

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Hi there,

I don't have much too add to what the others have said -especially dead tired at this late hour :) but I thought I'd pop in and say hello and a warm welcome to you both.

Hugs to your wife at this frightening time. She's lucky to have a husband who so obviously believes in her and who is behind her every step of the way. Things will get better and hopefully all this will soon be a distant memory.

:hug:
Katharine
 

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Hello Don,

A big welcome to both of you to the site...This is the best place to come for information , there are so many people here with knowledge... And of course the support is amazing, everyone is here for each other...
I am so sorry your wife is going through so much at once... you and she must be so frustrated running around to all these doctors...
Not that this will help you... But eight years ago I was diagnosed with lupus.. the desease was there for a very long time before I was diagnosed... I was also diangosed with rheumatoid Arthritis... I was put on all kinds of meds... I went to a kidney specialist also.... eventually things started to feel a little better... Then three years later... I was diangosed with non hodgkin lymphoma...for the last five years I have been fighting this new desease along with my other ones.... The thing I want to tell you is this... I feel pretty good right now..it took a while but they got the right meds and I feel ok....I just wanted to tell you my story to try and give you encouragement... I am sure your wife will fight like all of us do with a positive attitude...
I hope she is feeling well real soon... And welcome again to this site I am sure you will like being here.. We also have a chat room if you or your wife feels like chatting one on one with people...
Say hi to your wife for me and tell her I will keep her in my thoughts....
You get rest also...Sometimes the care givers get run down trying to help their loved ones... Take care of each other...

Love Penny
 

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Hi Don

I just want to welcome you and your wife to the sight and sure glad you found us.Well there is not much more to say as you have already gotten such wonderful advice from everyone on here.I just want to say that your wife will benifit a lot from you being such a wonderful support to her.Like you have already heard with the right meds and support she will get feeling better.Please try to come into chat if you feel you can you would be amazed how much support you can get from people in here.Take care both of you and please let us know how your wife is doing.

Tammy
 

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Hi Don & Wife,

Welcome to the board. There is loads of information and caring members.

You wife needs to learn to listen to her body. ( I learned the hard way) When you feel exhausted or fatigued, lay down and take a nap. Don't push yourself, that will make matters worse.

Always use sunscreen, stress = pain.

I have a caring husband who goes to all my doctor appointments. I always say 4 ears are better than 2.:wink2: He remembers things the doctor says and brings up what I have forgotten to ask.

Making a list of your symptoms is very helpful. My rhumey will ask when did it show up, how did it feel, when did it go away. I always seem to get a bit flustered when I go to the doctors. (hubby calls it white coat sydrome;)) Referring back to my journal helps us all.

You are doing a great job helping your wife by posting and asking questions.

What meds has the doctor put your wife on?

Take care and it is nice meeting the two of you.

:flowery:
Lyn

 

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Hi Don and Wife,
:) As other have said i can't really add anything to the brilliant advice above.
I just wanted to say welcome and that this really is such great source of support and information for me and i'm sure it will be for you and your wife.
As a mum i understand the struggle of having an illness and children, it makes life very difficult.
Its really great that you are doing what you can which is support your wife as best you can and take her health problems seriously. My husband is also really good and it really makes things so much easier knowing that he doesn't think i'm silly or over reacting and that he is there to give me a hug, reasure me and keep me going.

Well done to you.

I hope your wife manages to get all her symtoms properly addressed and manages to reach a point where things improve for you both and your children.
Good Luck

Cassie
 

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Dear Don, Things will improve with treatment but it can be a litle slow to start with.
Emotionally you both have a lot to come to terms with,but you will soon learn.
We become pretty good at managing our condition and you will be so valuable to your wife.
Best wishes to you both,
x Lola

PS My Husband Glenn also sends his Regards to you.
 

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Hi Don and welcome.

I am brand new here too and I have not been dx with Lupus yet.

I go back to the Rheumy doctor tomorrow to get the answer to the million dollar question, "Do I have Lupus"?

I am sorry about your wife and she will have to adjust to a new way of living.

I was dx with Multiple Sclerosis in 2005 and you do go through a lot of different emotions.................anger, sadness, and then denial in which I still remain.

Ah, the River of De Nial runs so deep but it works for me.

Your support is wonderful. My husband is a great guy who supports me too.

Best of luck to your wife. This board is awesome and supportive too. Tell your wife to join us here. I think she will love it.:wink2:
 

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Discussion Starter #11
thank you all for writing, support and words of encouragement. i will be sure to get my wife to read them all and join the group. the words of encouragement should do her wonders. i appreciate your encouraging words of my support. i do it for a wonderful woman whom i love dearly and one that i owe everything to. she has been a great friend, wife and mother and i intend on seeing this through with her, side by side, for the rest of our lives. i refuse to let this control us or change the plans we have made for the future. again, thanks to all of you. don
 
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