I braced myself for a salivary stone. No big deal, go in get it taken out and my child will be 'normal' again. I smiled at the ENT today when he said that it could be Lupus and that she needs to see a Pediatric Rheumatologist. I wasn't sure what else to do. Lupus you hear about occassionally. I've done some research. I'm scared to do more. 

From what I've read it's painful, the meds can make her sterile, give her a higher chance of cancer (we already have a very strong line of female cancers in the family, maternal great gramma & maternal gramma both breast, ovarian, & uterine) make her gain weight (I'm fine with that). I need someone to tell me that it's not too bad. That she'll be ok. That it will be like she doesn't have anything. I need my fantasy world right now b/c it feels like my world is crashing down around me. 

She's been running low grade fevers for most of the past 2 months, she has headaches and gets achy sometimes. I would just tell her that she's having growing pains give her an ibuprophen and tell her to lay down. She still puts on a big smile. She has no clue. I don't think I have a clue. I just want her to be ok. I'm so worried about her. TIA!~11 yo's mommy. 

I had a flare up 2 weeks ago induced by my mother and him. She made me vomit 3 times because she could care less about me, and he couldnt stand it that i was so ill because of her that as i laid down to ice myself, he wouldnt come near me. He wanted to leave so I told him to go....

later on he told me hes scared i am dying and he can't do anything  to help me. I had the flu ontop of it all, and he was having a gnarely flare up, which means no sex and lots of pain for him. He pushed me so far away and I pushed him away while I had the flu cus i thought i was dying and i didnt want him  to see me like that, i just didnt  know how to explain it because I was so out of it. And today it has been two weeks since we have seen each other....

I dropped off his things in his car at his work, along with a painting i  did of us, information on his condition so he can go get the right tests, and my sketch journal that has all of my thoughts and feelings in it about everything that has happened within the passed 9 months...

i told him I loved him and hope he gets over this. But he just says he wants to be alone and thats not like him, he says he doesnt wanna be in his house, nor does he know what to do, hes confused and is making me  confused and stressed.

He has said some very very hurtful nasty things and I have just tried to let him vent, and get over it. but he refuses to let it go, he didnt thank me for anything, and then all day has been apologizing but i am still taking a break from it because I need to be relaxed.

i dont know how to feel or what to  do, he loves me and i love him and right now... hes just too sick and I am too easily sickened by him that i have to take a break but I want him to hug me and lay with me...

I'm new here and my boyfriend of 8yrs was diagnosed with lupus 3yrs ago.  I've since been researching the illness periodically.  He's becoming more agitated about any and everything.  He has mood swings and paranoia, thinking everything is aimed toward him and at times thinks that people are against him, including me at times.

I recently found that he seems to be having symptoms of psychosis, or side effects from some medication and I don't know how to talk to him about it.  He doesn't think that the change in his behavior has anything to his lupus, he just blames it on everyday stress and our relationship.

Every time I bring up that I looked up his illness and attempt to discuss things he should try, he becomes furious.  He doesn't want me to research it, and says that he doesn't even research.  If I want to understand his illness just ask him.  He's well educated and a very proud man, I just think it works against at times. 

I love him with all my heart and I know he loves me too.  I know that it is things we can do to make it through this.  I just don't know what to do or how to help him, especially when at times he doesn't want me to, but then he doesn't understand why I'm quiet most of the time and don't say much.  When I so scared of upsetting him.

Does anyone have any suggestions?

I lost my Baby in December.  To be honest, I'm not sure if it was the SLE or a complication.  The doctors don't know either.  They know what happened, but not why it happened because the medicine (prednisone, plaqunel, various antibiotics) should have not allowed any inflammation.  She was in the hospital for appeared to be a bad cold or some kind of viral infection.  Again.. they're not sure, but she appeared to be, and was getting better.

I'm just lost.  Angry at myself.  Disallusioned.  but most of all... lost without her.

At 2 wks he presented with a grossly enlarged lymphnode. He had an MRI and biopsy that revealed an infection with unknown cause. A single course of antibiotics took care of that and we've had no problems since.

A couple weeks later I discovered he has food intollerances to dairy, soy, eggs, chicken, legumes, and chocolate. He is exclusively breastfed and I am currently on a modified and healthy diet.

About 8 weeks ago I presented with shin splints, gout, and obvious arthritis in my ankles. I was popping Aleve like candy which led to kidney dysfunction and pitting edema in my lower legs. I was dx with lupus a couple of weeks ago and have seen major improvements on prednisone. However, I now have petechiae on every part of my body and I found one spot so far on my son. In addition, he has what I've thought was eczema on his scalp but I'm no longer so certain that it isn't discoid.

Talk to me about your children's first symptoms please and did anyone here receive a lupus dx and have an infant with symptoms but still healthy?

We see our pedi on Monday morning.

My wife has had Lupus for at least three years, and I'm having a very hard time coping lately.

I'm looking for a place of like minded "caregivers", who I might be able to get some help, as well as offer some of my experiences...

Her pedi didn't believe she needed to see a rheumy because her ANA was negative (she had finished a round of prednisone before the test, don't know if that would affect it).  However, she went to a pediatric nephrologist yesterday, and she believes she may have Lupus and ordered a Lupus panel.  I didn't agree w/ her pedi, so I had already worked around the gatekeeper at my rhemy's office, and he agreed to see her Jan 15th with no referral, so at least we already have her appt set up.  The good news is the nephrologist said she is least concerned about her kidneys.  She believes the rash may be seratonin related & gave her a new medicine to try.  I wonder about her spleen though, because it was enlarged, presemably because of the mono, but now I'm not sure.

I'm so scared for her- she's so young.  I barely sleep and keep having nightmares that someone is trying to kill her- I wake up with my heart pounding & gasping for breath.  She's already seeing a counselor because my ex and I separated a year ago and it's hard on her, so she can talk to her about this.  I haven't talked to her about Lupus yet, because we haven't gotten a diagnosis.  She's just to young to be thinking about her having this.

When he gets off of work all he doers is sit on his ass on the couch.  Literally. 

He gets really angry when he has to drive me to the doctor.  It's not terribly often, and it's not like he has anything better to do.

He doesn't even have to go to the grocery store because his brother lives with us and he does and pays for all that. 

No one has lifted a finger to clean the house in literally years.  My husband let one of our cats pee and poop on the dining room rug for years and never cleaned it up.  He just sat there in the stinky room and waited for one of our dogs to eat the mess.  I refused to go into that part of the house and complained (I am physically almost totally incapacitated so I can't do anything about the situation).  My husband told me I was a nag.  He refused to put a litter box in that oart of the house because "litter boxes are gross".

Fast forward a few years and now in addition to my other medical problems I also have intersititial lung disease.  After I recovered from my 3rd bout with pneumonia, my lungs never started working again.  I am at home but I'm on 4.5 liters of o2 and I need 50 mg of prednisone a day.  With that I can just about hold my own while sitting in a reclining chair.  As soon as I get up mu o2 sats fall.  I can barely make it to the bathroom on my own.  I cannot wash myself or get my own meals.  I also have fibromyalgia, mitochondrial deficiency, diabetes...you can see the whole list in my siggy.

For awhile after I got out of the hospital this last time I had a visiting nurse, personal care attendant, and physical therapist.  They discharged me from their care because they said it was an unsafe environment for their employees and they filed a complaint with protective services for neglect or abuse of a disabled person.

So then the state got involved.  They are paying to have all the carpet ripped out of our house and doing a deep cleaning, which is great, because that probably was a big factor in causing my lung disease.  Unfortunately my lungs are permanently damaged and I can't seem to breathe at all without the oxygen and steroids.  I am so weakened that if I catch so much as a cold I will probably die from it.

According to the safety plan that the social worker made up, my husband is supposed to do maintainance cleaning once all the contractors are gone.  He has told me that he has no intention of doing so because "every year he gets more and more tired, and he isn't going to have any more energy after the housae gets cleaned".

Today he had to work and he left me with no food...remember that I'm diabetic.  I woke up with low blood sugar and it was just dumb luck that I decided it might be a good idea to ask my brother-in-law to brimg me somem cookies last night or I could have died....because I am unable to get to the kitchen.

A couple weeks ago I was taking a nap and he went to bed without leaving me anything to eat.  When I woke him up because I was hungry he got really mad at me for disturbing him.

When the social worker and such were coming to the house he would do my laundry promptly and fold it and bring it upstairs to my room.  I do appreciate that, don't get me wrong, but it's not like he's doing anything heroic.  After they all stopped coming I asked him if he could do some laundry for me and I had to wait for a couple days in filthy pajamas.  Then he came upstairs and dumped the laundry in a pile..which I am too weak to even sort out all at one time.  When I mentioned this fast his response was,"well, at least you got it".

Today one of the dogs pooped on the floor because I am unable to walk far enough to let them out.  My husband came home and started screaming and swearing...at me...at his brother who arrived a few minutes later...at the dogs.  Every other word was F this and F that.

On trash day every trash bucket except mine gets emptied so I end up sitting in a pile of trash.  Last week there was so much overflow all over the floor that I got stuck in my recliner.  I got so angry that I threw the trash basket into the hallway.  He didn't get the point.  I'm sitting in another pile of trash right now.

The other day I asked him to please take my dirty food dishes from the day before and my full trash bag.  When he didn't bring me a replacement empty trash bag I asked him for one.  he came in the room and practically threw it at me he was so disgusted.  Apparently he was angry because he "was trying to sit down".

Obviously I haven't has a bath since the personal care attendant left.  I know better than to even bring up that subject.

I don't like being totally dependent on other people, and I'm trying really hard not to ask for too much.  But, I do need to have food and water and clean clothes.  Is that too much to expect from someone who at most works 20 hours a week?  I try really hard not to be picky about meals or anything.  I ask for things when someone gets an opportunity; I don't say "I want it now".  One time I did ask him to get me some gatorade when he was going out to do errands, but he didn't want to do it because he "would have to get out of the car".

Now I need the reality check.  I've been isolated at home for a pretty long time now because I'm so ill.  To me this kind of treatment just seems wrong.  Or, am I the difficult, selfish  pain in the ass that my husband seems to think I am?  I don't know what to think any more.  I think one of us is having some sort of mental breakdown.  I just need to know who it is.

Scared and Confused,

Deb

Inspite of it all she smiles each and every day.  We roll over in the morning, look in eachothers eyes and thank God for another day together.  Tennille is my hero, the strongest woman in the world, the softest woman in the world and the smartest woman in the world.  She is my everything. 

Did I mention, through it all, she managed to finish dental school and is now a practicing dentist.  Sure she works her own schedule but Lupus has never gotten the best of her. 

We recently started a support group so we could listen to others and hopefully spread some positive messages.  Did I mention that this woman also manages to raise two adopted children 13 and 11. 

I am proud of her and want all to know that anything is possible, even in the most dire of circumstances.  I remember being with her at age 15 after her nephrologist told her that she probably had ten years to live.  I remember her response was "I'll show him".  She's never changed that attitude.  On that ten year anniversary we went to Hawaii instead. 

Lupus is a dreadful disease that robs people of their mobility, their organ function and in many cases their lives.  But what Lupus can never take from you is your zest for live, the way you take each and every day and bleed every second of its juice. 

I want people who may read this to say...if she can do it...so can I.  My wife is my hero.  I am proud to say that I get to be by her side during both good and bad days.