Lupus
I really just wanted to write a very short post tonight about what my doctor told me today. It seems that some blood tests from my hospital stay came back positive for Lupus, or at least I have the symptoms plus the required blood test requirement to mean I have Lupus. What does this mean for me? I finally have a name for all of the problems I have been having all of these years. The other side is that Lupus does not have a cure. I can’t be fixed like I have been hoping for so long. It's also not a life threatening thing either, I guess it is just going to be a different way to live.
I have been reading so much on the net about it today that I think my eyes are going blurry again. All of the symptoms seem to fit and my doctor explained that it is the cause of all of my immune problems too. Because my body is weak, it can’t fight off infections and when I get stressed, it is even worse. A friend told me these are called “flare ups” in the Lupus world. After reading everything I did, I wondered why my doctor never did anything about it before, although she said that I had a 0 negative ANA test in the past. She did not tell me what type of Lupus that I have I am just looking things up on the internet and trying to figure out which on fits the best, she actually said "there is no name yet for what you have, it's a type of Lupus".
She said over the phone that it was the connection between my thyroid, arthritis and immune system problems. It made sense finally. I couldn't understand before why I had all of these small things that seemed to fit together and I knew that they were part of something bigger because they didn't included all of my symptoms. With this new diagnosis it all makes sense. With the stress comes my colds and pneumonias, along with various other immune attacking problems that just never seem to get better. Maybe with the treatment of the Lupus I will feel healthier. I can hope. It means more then ever that I have o learn not to stress over stuff.
Now I guess I am happy, scared, nervous, relieved, angry and confused all at once right now. I have to make an appointment to see a specialist at Johns Hopkins as soon as possible, according to my doctor. I am trying not to be too upset until then because I know that even then I am going to have to wait for more tests.
I will continue to write more as I find out more but for now I just wanted all of my friends and family to know what was happening with me.
Comments
Wow, that is some pretty heavy news to deal with. But like you said, on the upside, you might finally know what has been causing a lot of your problems (other than Jemal, of course).
Our thoughts are with you. I would say prayers, but you probably know my thoughts on that.
Posted by: Jerry | April 6, 2006 09:31 AM
Knowing what the problem is is important so you can be properly treated. I hope you find out soon one way or another.
My grandmother had lupus for several years. It did not seem to cause her the kinds of problems you have been dealing with. What I recall is that she had several joint replacement surgeries. I don't know if they had anything to do with her lupus. She also had diabetes and that can make a big helth difference too.
Let us know what you discover.
Posted by: skank | April 6, 2006 03:26 PM
I wish you a speedy recovery so that you can write that book about your life. I think you are a brave woman. I admire you. Lots of luck with your future and your family. Feel better. And if you are wondering who I am, I am a wanderer who just happened to stumble upon your blog and spent the last 2 hours reading about you.
Posted by: Sunandan | April 8, 2006 01:37 PM
Jerry: Actually, it was only hard for the first day or so, after that I realized that I now have a name (maybe) for what has been wrong with me for all of this time. And Jemal has been wonderful BTW, without him I wouldn't have been able to get through the last 7 years. Thank you for your thoughts!
Skank: From what my doc says it's Lupus but they don't have a name for what I have. I guess it's a type of Lupus or like Lupus. I am not sure she told me over the phone and my ears started ringing after she said you have Lupus.
Sunandan:Thank you so much, I am happy to hear that you enjoyed reading about my life. I worried so much that it might be too boring to the rest of the world. You are always welcome here.
Posted by: Caffeine | April 8, 2006 03:34 PM
From what I know of Jemal, yeah, he's a good guy.
Brande is thinking we should all get together for dinner at some point. We'll have to set something up.
Posted by: jerry | April 9, 2006 01:07 AM
It's been a week, do you know anything more?
Posted by: skank | April 12, 2006 08:50 AM
Jerry: Right now I don't get out of the house very much. I hope that all of that will change soon but it would be nice to get out and make some new friends.
Skank: I finally got an appointment today. It is for the 19th. Hopefully, after that and some lab tests we will know something more. I kind of have my hopes up that this is the final condition that I have to worry about, besides that lung polyps that they found Monday. I have a doctor to see about that on the 20th. So there is a lot going on I just can't keep up. But I have a good Calendar system and plenty of Post-Its. I will try to update as often as possible, it's just not as easy when your comment emails aren't working.
Posted by: Caffeine | April 12, 2006 09:08 PM
Jerry: Right now I don't get out of the house very much. I hope that all of that will change soon but it would be nice to get out and make some new friends.
Skank: I finally got an appointment today. It is for the 19th. Hopefully, after that and some lab tests we will know something more. I kind of have my hopes up that this is the final condition that I have to worry about, besides that lung polyps that they found Monday. I have a doctor to see about that on the 20th. So there is a lot going on I just can't keep up. But I have a good Calendar system and plenty of Post-Its. I will try to update as often as possible, it's just not as easy when your comment emails aren't working.
Posted by: Caffeine | April 12, 2006 09:09 PM
Hmmm, is there an IP address tied to my April 9th post? I don't remember posting that one....
Regradless, hope you guys have a great easter!
Posted by: jerry | April 14, 2006 10:04 PM
The IP address matches. Maybe you did it in your sleep or you have a very smart little mouse in your house? Stranger things have happened I am told. If you would like me to delete it I can.
Well, thank you for the Easter joy but we have been celebrating Easter for the last 3 weekends because of the kids schedules. This weekend is all about the cleaning...enough with he eggs! I have enough candy to last for 3 Easters. (We went a little overboard with Easter this year). Hope that you enjoy your Easter and everyone else who reads this blog as well.
Posted by: Caffeine | April 15, 2006 08:34 AM
Hola caffeine, no puedo escribir en ingles, hablo español sin embargo siento tu angustia y preocupacion, yo tengo una hija de 10 años a quien se le diagnostico Lupus hace 18 mese, te pido calma ya que esta es una emfermedad que se puede controlar.
{Using Google Translate: Hello caffeine, I cannot write in ingles, I speak nevertheless Spanish I feel your anguish and preoccupation, I have a daughter of 10 years to that I diagnose Lupus to him does 18 pulls, I request calm to you since this is a emfermedad that can be controlled. }
Posted by: nestorm | April 17, 2006 01:32 PM
I've managed to save up roughly $28640 in my bank account, but I'm not sure if I should buy a house or not. Do you think the market is stable or do you think that home prices will decrease by a lot?
Posted by: Courtney Gidts | June 2, 2006 06:21 AM