Hi, my name is Kelli and I was just diagnosed with SLE almost 2 weeks ago. I go to school in Northern Michigan, more than 2000 miles away from home, San Diego. So I just got this diagnosis and now I'm here dealing with it alone. I'm scared about it, and feel like my life is no longer mine to control. I found this board, and joined in hopes that it will be a place I can get help to deal with it.
I've been down in the dumps about the diagnosis, even though it's nice to know that my medical history actually did have a cause rather than just being due to some unknown cause or as they put it, a "virus". I'm still young, I turn 23 in three weeks, and I'm afraid that this disease is going to be a major turn-off to all relationships prospects. I want to get married sometime in the future, and have children, and I'm just afraid of what the future will bring. I know I'm probably just being too pessimistic, but that's how I'm feeling right now. Is there any advice anyone can give me, I'm really stressed out lately, the new semester starts tomorrow morning, and in the past I always seemed to get sick when I was stressed out. I am just feeling so...overwhelmed and don't know what I am supposed to do from here. I have no health insurance here...I belong to an HMO in Southern California, and I have to go there for all my doctor appointments. Even though the extent of involvement in my case of Lupus is not nearly as bad as some of the stories I have read on here, there is still the potential for it. Okay, I think I've rambled on enough. Thanks.
Sorry you have this to deal with and are so far from home, too.
Lupus is a daunting diagnosis and it can be bad, but for most of us, fatigue and arthritis are the worst of it. It is very important to stay out of the sunshine as much as possible, to wear spf35 sunscreen, plus a hat, long sleeves, and slacks. For whatever reason, sunshine makes lupus aches, pains, fevers, and rash worse. That must be really hard for a young California girl to hear, but it's important.
Try to read up on lupus. There as several good books that are in many libraries. One is called "The Lupus Book". It may be good to let the Health Service at the university know about your diagnosis. They can be helpful. That's why they are there!
Be aware that you could become allergic to things you've never been allergic to before. It's common for lupus patients to become allergic to Sulfa and any drug that has a sulfonamide in it's chemical make-up (like Celebrex). That happened to me, much to my surprise. I didn't have any allergies at all up until then. Allergies aren't lurking under every rock by any means. I have had no further allergies appear - yet.
Get enough sleep and rest and eat a healthy diet, well mostly!
I think your HMO is required to refer you to a local doctor so you can be cared for while out of your area. To find out if that's so, call the California Insurance Board that is part of the state government. If I'm mistaken, would it be possible for you to transfer your credits to a California school so you don't have the expense of a cross country trip to see your doctor??
Last, many of us have found the best kind of doctor to help care for us is a rheumatologist who has lots of lupus patients in his or her practice.
Glad you found us. There is lots of good information here.
However hard the adjustment is, to knowing you have lupus, I honestly believe you stand a much better chance knowing than not knowing. As I read your post and saw that you are 23, I flashed back to the seemingly constant health problems I sprouted during my early career years and first years of my marriage. From what you write, it sounds as though you already know that drill. Looking normal but rarely feeling normal puts the brakes on so many things.
Like many others with lupus, my problems are both less frequent and less severe since being Dx'ed and put on medication (and avoiding sun). So I'd have given MUCH to have the Dx and the chance of substantial relief in my early 20's. I think you have increased your odds of living a more "normal" life---with some luck, that is, and given that your symptoms can be largely controlled.
...not that you wanted any of this, of course...!
Barbara mentioned one hardcover, the one I happen to own. FYI, this dr. devotes a long section to pregnancy. I also recommend it. There are several great hardcovers out there, which you could find in almost any good bookstore or library. Even if you intend to buy one, you could borrow several from a library first, to see which suits you.
Also, there are several "sticky posts" at the front of this board, on symptoms and diagnostic criteria for lupus---and also for antiphospholipid syndrome, the so-called "sticky blood syndrome that occurs in some lupus patients but also "standalone". These are very useful short lists.
I hope you post whenever the mood strikes. In the meanwhile, good luck on squaring away how to get your HMO to respond out-of-state.
Welcome to the boards. These boards are a good place to come with questions. Of course it can not replace a Dr.s advice but it helps a lot with understanding the various little quirks of this disease.
I have recently been Dxed also. I have scarring discoid lupus that is eating away at my connective tissue in my joints causing much pain. To date I have had a minimum of major organ involvement and Dr.s are saying I should not have much in the future either. I am also much older than you. I have had this for most of my life and no one knew. I also have 3 grown children and 6 grandchildren. I have met 7 other women in the local lupus support group who all have children.
However, I remember first finding out what lupus was and feeling as if my life were basically over. The depression and the fear, even at my age and with my faith, were almost overwhelming. The people on these boards got me out of all that in short order. They gave me information and emotional support that convinced me that I still had a life in front of me.
It's hard to hear a diagnosis like this and not know what lies ahead. But the truth is, none of us know what lies ahead, even without something like lupus. We think we are in control, but we are not. If you do not have a church or a pasor, find one. Faith will be as helpful as an excellent Dr. Take precautions regarding your disease and then go live your life. Remember God is with you always in all things.
just diagnosed and in need of support 
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