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Medical Forum / Diseases and Disorders / Lupus / April 2004Hi, First post
This is my first post here and I want to introduce myself. My name is DeAnne, I'm 42 and I was diagnosed with Lupus April 15. I've been reading through all the post the last few days and trying to learn what I can and of course doing searches for good web sites to read. My ANA was 1:1280, my DSDNA was 135 and my RNP was 113. From what I gather those numbers aren't very good. My GP ran the blood work after a rash on my face,and a good look at my past medical history. I knew something was up when they called the house, instead of me calling them for the results. He sent me on to a Rheumatologist who went over everything and gave me the news. He gave me a prescription for Plaquenil and had me go get a Plaquenil screening at my eye Doctors. So I guess my world just changed, but it seems I am among good company. I go back to the Doctors in August, I guess he'll be my new best friend! What a shock all this was! Welcome, DeAnne!!! Yep, now you know what is wrong with you. Now making the rest of the world understand is another problem. This is something you can learn to live with - not always easy but you'll learn. I'm still going - "oh, that's lupus, too?" You'll get the hang of it. But one thing you need to learn real fast is what affects you might not affect someone else with lupus - no two people are the same. KCat and Andy both have some great information on their websites - I'll suggest you do some reading. It will help you understand. So you have the blood work - what hurts and how can we help? Bev > This is my first post here and I want to introduce myself. My name is > DeAnne, I'm 42 and I was diagnosed with Lupus April 15. I've been [quoted text clipped - 10 lines] > I go back to the Doctors in August, I guess he'll be my new best friend! > What a shock all this was! HI and welcome! When I was first diagnosed two years ago I wasn't sure what to think or where to begin to regain control of my health. The first thing was to inform myself. I am not trying to push a book, but I think "The Lupus Book" by Dr. Wallace is the best. I have read it front to back and pick it up again when I am in doubt about something. This is a great place to communicate with others who have the same illness as you. These guys are great! Welcome again! RhondaM > This is my first post here and I want to introduce myself. My name is > DeAnne, I'm 42 and I was diagnosed with Lupus April 15. I've been [quoted text clipped - 10 lines] > I go back to the Doctors in August, I guess he'll be my new best friend! > What a shock all this was! Hi DeAnne, I was just on my way to bed, but I saw your post and wanted to extend a welcome. It has been pretty quiet around here today. I am sure others will drop by soon. Hearing the diagosis can be overwhelming at first. I still think that knowing what is wrong is half the battle. Now treatment can begin. I will look forward to getting to know you better. I am so tired right now, that I am finding it difficult to put my thoughts together. Talk to us about anything. Someone will always listen. BJ-Sk. Canada > This is my first post here and I want to introduce myself. My name is > DeAnne, I'm 42 and I was diagnosed with Lupus April 15. I've been [quoted text clipped - 10 lines] > I go back to the Doctors in August, I guess he'll be my new best friend! > What a shock all this was! Welcome, DeAnne. This is a great place to get information, support and whine when you need to. I found Plaquinil helped me, but it took many months to really see a difference. My doctor started me on a low dose of Prednisone at the the same, and that speed things up at bit. The thing I found interesting is that annoying little symptoms that I'd had for years just kind of disappeared for a while. One day I'd realize - "hey, it doesn't hurt to do... anymore." Are you photosensitive? I've found that to be one of the hardest things to live with - and the fatigue. If someone else hasn't already suggested it, The Lupus Book by Dr. Daniel Wallace is excellent. Kind of technical, but it helps you speak the same language as the doctors, and he helps you understand the technical terms. Make sure you get the latest edition (published in the late 1990's). Dr. Wallace has written one of the most respected reference books for rheumatologists, as well. Too bad it's hundreds of dollars :o( We hope to hear from you often. Gretchen Diagnosed 5 years ago at age 35 In article <408721E7.4070309@att.net>, Ayersd <Ayers1@att.net> wrote >This is my first post here and I want to introduce myself. My name is >DeAnne, I'm 42 and I was diagnosed with Lupus April 15. Welcome! For the sake of avoiding future misunderstandings, would you like to say which part of the world you live in? That'll avoid someone giving you eg California-specific advice when you live in France!  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Welcome DeAnne, There are some really good people here and good listeners too. Just remember we understand when others don't. You are wise to read up as much as you can. And yes like others have said, you will have your own unique symptoms and maladies. That is why it is sometimes hard to diagnose. Welcome and hope we can help you as much as we can. If anything be your friend. Paulette Ethyl Mermaid (the last two names are a nickname Mair gave me) > This is my first post here and I want to introduce myself. My name is > DeAnne, I'm 42 and I was diagnosed with Lupus April 15. I've been [quoted text clipped - 10 lines] > I go back to the Doctors in August, I guess he'll be my new best friend! > What a shock all this was! Hi DeAnne, welcome to our newsgroup. I think you will like it here. There are very many understanding people here, so you can just about always find someone to talk to. It looks like you had a very straightforward diagnosis of lupus, and did not "hang around in the mists" without a diagnosis for long. Is this true? I wish you the best with your lupus experience. Symptoms can often disappear as mysteriously as they came. A wish for good health to you! Mair > This is my first post here and I want to introduce myself. My name is > DeAnne, I'm 42 and I was diagnosed with Lupus April 15. I've been [quoted text clipped - 10 lines] > I go back to the Doctors in August, I guess he'll be my new best friend! > What a shock all this was! Hi everyone, I'm in Virginia, I didn't even think to mention it, Sorry. Yes I would say my diagnosis of Lupus was very straightforward, very big shock. It possibly explains some things from the past few years, but I didn't hang in limbo like it seems most of you did. I've had a few rashes on my face and arms but nothing big. Just the last rash didn't seem to want to go away. I have some joint pain, but I've always put it off, blaming it on other things. I know I haven't had much energy the last few years, but once again I brushed it off as nothing. This sure opened my eyes! I'm scared right now, but at the same time grateful that I didn't have to go around trying to find out what was wrong with me. Now if I could just learn to deal with stress better and not let kids, grandkids and work worry me! My boss isn't the most understanding and has already made a nasty comments about me being off for Doctors appointments. Someone told me I needed to start the FMLA paper work so she couldn't hold it against me for missing work for Doctors appointments. My Doctor is an hour away, so it takes most of the day. Thanks to everyone for saying hello and thanks for being here! > Hi DeAnne, welcome to our newsgroup. > [quoted text clipped - 10 lines] > > Mair Ok, I'm down here in the SE corner of Virginia. Where are you? Bev > Hi everyone, > [quoted text clipped - 31 lines] > > > > Mair Near Lynchburg, I'm seeing a Doctor from Roanoke. > Ok, I'm down here in the SE corner of Virginia. Where are you? > Bev [quoted text clipped - 37 lines] >>> >>>Mair One of our favorite places in VA is just slightly north and west of Lynchburg on the Peddler River. We go out that way quite a bit. Bev > Near Lynchburg, I'm seeing a Doctor from Roanoke. > [quoted text clipped - 39 lines] > >>> > >>>Mair We have friends that live near the Peddler River. It's very pretty out that way. I couldn't live that far out, I like to shop to much and enjoy a little noise. Was raised in a big city, so it was a shock when we moved to the Lynch burg area back in '76, they didn't even have a mall at the time! I have since moved from Lynch burg, but still in driving distance. When were you diagnosed with Lupus? I haven't told many people about it yet. The ones I've told look at me like I'm crazy, because I don't look sick and I guess because a lot of people have never heard of it. I think some of the ones that know think I'm being silly because I'm reading so much about it, internet and books. I had someone tell me they didn't understand why I was upset they knew someone with Lupus and they were fine, just had to stay out of the sun. It's not like I'm falling apart or anything, but I do feel like my world has been turned upside down and I'm not sure if I'm gone land on my feet or even where and when I'm gone land. De > One of our favorite places in VA is just slightly north and west of > Lynchburg on the Peddler River. We go out that way quite a bit. [quoted text clipped - 4 lines] >>>Ok, I'm down here in the SE corner of Virginia. Where are you? >>>Bev I just responded and the computer locked up when I hit a stay key. Email me with your phone number and I'll call you. Bev > We have friends that live near the Peddler River. It's very pretty out > that way. I couldn't live that far out, I like to shop to much and [quoted text clipped - 22 lines] > >>>Ok, I'm down here in the SE corner of Virginia. Where are you? > >>>Bev > This is my first post here and I want to introduce myself. My name is > DeAnne, I'm 42 and I was diagnosed with Lupus April 15. I've been [quoted text clipped - 10 lines] > I go back to the Doctors in August, I guess he'll be my new best friend! > What a shock all this was! Hello DeAnne, Nice to meet you. :-) I guess your eye doctor will be a regular too. Good luck with work and FMLA I don't have experience with it because I'm from Canada. Here we have UIC - sick benefits which only "kick in" after one or two weeks sick and up to a max of (I think) 12 or 16 weeks, so it's not helpful at all for having to take a day off here and there to go to doctors for test. And yes, I've experienced problems with employers not being too happy about such. They understand when it's an accident or a surgery but less with chronic illness. It's a common concern for many with chronic illnesses. Some here don't work outside the home, some work from home, some work part-time, some work fulltime but then have to stop from time to time for a break, some are on disability benefits. Let us know how it goes with the Plaquenil. Best wishes, J |
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