Lupus... What can I expect?

Hi Jo, So good to hear from you. If I do have it then I hope you are right. I have so many bad days now, I can't really work anymore in.LOL I'm thinking this may be the reason for many of my bad days. Thanks sweetie for your love and prayers. How are you doing? Say hello to John for me. Love Ya Leenie

The stitches were removed Thursday from the fifth operation on my jaw, so I'm doing well. John's hanging in there, as we continue to contact officials who might be able to help. Are things at your house OK? Is there any way I can help you? XOXO

Jo, The waiting for you and John must be so very difficult. Just hearing from you makes all the difference. Dennis is still out of work but much more patient and very helpful. Leenie

Hi Dawn, I have researched the internet and the best site I have found so far is the Mayo Clinic. I'm sure that if I do have Lupus, the Drs. will direct me to all the info a person can read. My hope was to get some personal experience without wishing it on anyone. Thanks for stopping by. Hugsss Leenie

Hey cyn, How irresponsible of the doctor to make you think you have an illness that you don't. For me, the doctors only suggested the possiblity and sending me to the rhuematologist to make the diagnosis. I've read about the facial rash but I'm also familiar with rosacea. Like I told my Primary Doctor, I want to know what is going on with my body. Good or bad, I can deal much better with the truth. But at the same time I want a for sure diagnosis by the Doctor. When I lived in California, I worked for a Pharmacist that was incredibly knowledgable about the medical field. I realized by listening to him how much I craved learning about anything Medical. When I learn what my diagnosis is I will be sure and let everyone know. I am so happy for you that the diagnosis was wrong for you. I hope it didn't cause you too much agony. Hugsss Leenie

Hatley, I agree with you. I'm seriously not looking for a diagnosis. I'm looking for personal experience that may or may not apply to me. I trust that my Doctors will fill me in on what they find. Right now I have a need to learn more about this illness from people who have some kind of experience with it. For me, it's all about knowledge. Thanks for your advice Hatley. Hugsss Leenie

Hi fallen, Welcome to Mylot!! I appreciate your responding even if you don't know. That's how we get to know each other. I hope you enjoy Mylot as much as we old members do. As you find out for yourself, most of the people here are kind, loving and extremely supportive with each other. So welcome. Leenie

Thank you grace for your insight. I'd also like to welcome you to Mylot. This a a great community. We support and help each other in any way we can. I'm sure you've seen a little of that so far. Anything you need or wonder about just ask and we'll try and help. See you around and thanks again. Hugss Leenie

Hi mim, I have been through quite a lot in my life but was hoping that would be the worst of it. But like you said if I do have Lupus then I will deal with it. At this point I have so many aches and pains and arthritis flare ups that I have probably been dealing with it for a long time now. Thanks for your input mim. Hugsss Leenie

Mim, It's so good to see your photo!!! It's a great picture!

you take care of yourself leenie, she's still smoking and drinking, and with her medical problems she's not doing herself any favors

Hey Elic, Your neighbor is the one I can most relate to. I have so many health issues going on that I'm wondering if many of the issues fall within the borders of Lupus. Of course I don't have a definite diagnosis but it makes sense to me. Thank you Elic. Hugsss Leenie

Hi drannhh, Yes, this is why I haven't been very busy here. But no matter what, I can't stay away from all my wonderful friends for long. I will check into the Lupus Foundation. It's one place I've forgotten about. Thank you for the link and I have to say how right you are about the conscious breathing. Thanks for your very helpful thoughts. Hugss leenie

I had blood work done as well and because I had the butterfly rash all across my face, they did a biopsy on the area that was raised the most and sent it to Louisiana to a lab down there and it came back positive. I've had the biopsy done three times and all three times it came back positive for discoid lupus. If you don't have any rashes like that, I had them all over my body but the raised area was mostly on my face, then you won't have that kind of test but if you do then they'll most likely do a biopsy on you. Now if it's systemic, I don't know anything about the tests that they may run. I do know someone that does if you want to know more. I'll have to do some digging to get her email address but I can get it.

Hey Mary Beth, I knew that someone here told me they had lupus. What test did they do? I've had blood tests done by my Pulmonologist and he's the one sending me to a Rheumatologist. My Primary also got copies of the blood tests and told me they needed the Rhematologist to determine if I have Lupus. I also had a chest CT Scan and the Nurse from my Pulmonologist called for me to bring the films from the Scan to see him. Not sure when I'm seeing the Rh. Soon I think. I'll keep you posted. Hugs Leenie

Hi Tam, My hubby now and my second husband who passed away in 2002 both have had asthma and I know how awful it can be. In fact I think the Pulmonologist thought I might have asthma. I hope they are wrong about the Lupus but I will deal with it as I do with everything else. You take care too Sweetie. Hugsss Leenie

Hey Leslie, Don't worry Hun, I have all the patience in the world with my Doctors. I'm not trying to diagnose myself, just trying to educate myself. All my symptoms I have been dealing with for a long time not really thinking it might be because of a specific diagnosis. I just dealt with it by doing what my body told me to do, like lay down and rest. Honestly, I'm not worried. I never worry about my health or what I might have to go through concerning it. My Sister don't understand why I'm not a nervous wreck. The truth is, I put my health in God's Hands a long time ago. If this is what He wants of me then this is what I'll do. I see no need to worry. I just take it as it comes. I do worry about my friends and how they are doing in their lives, like you. You and Shelly were my first friends when I joined Mylot. In my book you are a very special friend whom I hope to stay in touch with better. I love your emails. I wanted so bad to meet you while you were here in Fl. I want to hear all about that and everything else going on with you. Write soon when you can. Love Ya Leenie

Hey Jan, It's so good to see you. As much as we enjoy our Mylot, life does go on and someone has to run it. These days I'm not able to do much but I attempt to do a little cooking and a little laundry with the help of my hubby. He has really come through for me. I think we both have been in a state of denial about it all. Thanks for your concern and caring. I will let you know when I find out what the diagnosis is. Big hugs back to you. Leenie

Hi Jen, Thanks for your help. I do realize that Lupus affects everyone differently. Right now I don't have a definite diagnosis. I'm just in the process of educating myself on the different ways it effects different people. When I know for sure one way or the other, I will surely let you know. Hugsss leenie

Hi moonie, They haven't determined yet for sure if I have Lupus but a lot of my blood tests seem to indicate it. I also have some of the symptoms. I guess I'll know more after I go to the rheumatologist. Thanks for the prayers sweetie. I'll keep you posted. Hugsss Leenie