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Posted 9/2/2008 3:41 AM (GMT 0)
I have posted recently that I've been having problems with my breathing.  I've noticed that smells can cause me to start having problems.  Hairsprays, perfumes, powders, any cleaning chemical, gasoline, bug spray, even newspaper print.  I can't have any of that stuff near me now.  I have no idea what has changed and made me this way.  Its frustrating to my family, I have a 16 yr old daughter who loves perfumes and hair sprays and a husband who likes to read the paper in bed.  I hate that me not feeling well effects my whole family.  Mosquitos are really bad here and I can't stand to spry the kids with bug stuff and then if they do get it put on them and come inside for anything it kills me.  I don't know if this is caused by lupus or what.  I have an inhaler but it only seems to last a little while and then it quits.  the er dr thought I had inflammation in my lungs, what causes that , does normal asthma cause that?  I don't know if any of you know or not.   
Posted 9/2/2008 12:10 PM (GMT 0)
I have the same problem with some things. My boys started using this spray called "Axe" I thought I was going to have to go to the ER for that. They know now that I can't be near it. My sil had to be taught too. don't feel bad. its no different that being allergic to a cat or dog, you just can't be around it.

I think, if anything, even getting a preliminary dx gave me permission to care for myself. as moms /wives ... we are programmed to put everyone else first. Just think to yourself, how would you treat someone else in your shoes? then take care of yourself.

Marie
Posted 9/2/2008 1:59 PM (GMT 0)
Thanks, it is hard. I think even as a little girl I just wanted to be a wife and a mom. I even did foster parenting for awhile and adopted 2 beatiful girls through that. Now that I feel so bad all the time I can't do it anymore, I'd love o adopt a little boy, but I have to figure this all out first. Thanks
Posted 9/2/2008 2:12 PM (GMT 0)
I looked up info about this and it says that people with lupus can have a hyper sensitivity to smells.  I can't even go down a cleaning asle or smelly candle isle.  I've been this way for yrs but it was mild and then boom it got worse.  It  used to be it would give me a sore throat and stuffy nose now its a hard time breathing.  Also in my 20's I developed a sea food allergy, and a latex allergy I'd never had before.   I thought it was wierd for that to happen just out of the blue.  as and adult.  Maybe its all connected somehow.   
Posted 9/2/2008 5:03 PM (GMT 0)
You really need to discuss this with a pulm. I was told I have asthma by a pcp for 5 years. Eventually nothing worked. I went to the pulm. He said I don't have to use my asthma meds anymore because I have copd! Needless to say I was very angry. I was misdiagnosed for all those years when quite possibly there was somthing I could have done to at least control it some what. Now I am on oxygen 24/7. I do have a few days here and there without it but most I have it and I am in the hospital with pnemonia at least twice a year. My pulm. said I will probably live another 8 years but my quality of life will continue to go down hill. Right now my lung capacity is at 23% all I can hope for is a transplant. but my heart is becoming effected and if they DX me with autoimmune disease I won't be eligible at all for a transplant. So take care of your lungs they are the only ones you have. Be agressive! and yes I can't be around any of the chemicals you mentioned either.
hugs
Posted 9/2/2008 5:22 PM (GMT 0)
Hi Domanique:

I've seen all of your posts and I'm sorry that I've not responded sooner. I've been very very ill and it's hard to sit up and post at times. I've had lupus for 20 years now and I have heart, lung, GI, joint, and skin involvement. I can't help but wonder if you're having a touch of pleurisy.

I have chronic pleurisy and pericarditis. Pleurisy is inflammation of the lining of the lung. Lupus can cause this condition. Pericarditis is fluid collecting in the sack around your heart. Both conditions can be extremely painful. I agree with Carol that you should see a pulmonary doctor.

I can say that it's really hard to get a lupus DX. Like I said I've had lupus for 20 yrs but was only officially diagnosed seven years ago. Since then my life has gone totally down hill. I've been on prednisone for 7 years now. My lupus is so bad I was forced to take Cytoxan, which is a powerful chemotherapy drug. I was told I stood a 4% chance of getting lymphoma or leukemia from it. Well guess what I've got rotten luck and I know have MDS which is a blood cancer like leukemia. So now not only do I have the lupus, RA, Fibro, now I've got cancer. Needless to say I'm lucky if I can pull myself out of bed in the morning.

I only tell you this to encourage you to keep at your doctors. Don't let them make you think this is all in your head. Write down every symptoms, every pain and what you were doing at the time. I would insist that they give you your lab results before October. I hope that you get the care you need and get on a treatment plan soon. I'm wishing you the best and please take care of yourself.

Hugs,
Barbara
Posted 9/3/2008 1:08 AM (GMT 0)
Thanks for caring enough to write back to me. I appreciate it so much. It gives me strength and confidence to keep going back to these drs.
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