new to the site

ejrifkin · Posted: Tue Oct 24, 2006 1:03 am Post subject: new to the site

Hi, my name is EJ (Elizabeth Joi). Im 18 and have been attending Santa Monica College for two semesters (studying special ed). I live in LA

I was identified as having an auto-immune disease with lupus-like symptoms around this time four years ago. Recently, after switching doctors (insurance would not cover juvenile care any longer) I was "officially" diagnosed with lupus.

It's actually pretty funny how it happened....I broke my knee at summer camp (I slipped getting out of my bunk bed) and the nurse at camp told me it was just a bruise, so I kept walking on it. My PE dance teacher got so upset with me in the fall for never participating ("My knee hurts!") that she ordered that I see a doctor. So we find out it's broken and, after months of physical therapy, that the swelling is just getting worse and worse. My orthopedist then sent me for bloodwork--then to a rhumetologist at UCLA and there you have it.

I am joining this group out of desperation--I feel as if no one understands. I spent years before my diagnosis being called a drama queen; it was so frustrating. I came to believe my problems were imagined and I was just crazy. I still think this at times and this leads me further into my... how do you say...funk. I am not myself when I'm sick or in pain, but I don't feel like myself when I'm on all these drugs (so loopy at times haha).

I feels good to write all this, I hope someone reads it and says YES I KNOW. Because then maybe you can tell me what you do. How do you get past all the midterms, swollen hands, fears of the future, etc.

Thanks for reading if you did....it's been a long week (but aren't they all)

KayCee31614 · Ferret Joined: 10 Oct 2006 Posts: 114 Location: Adel, GA

Hi EJ.
I am glad that you found this forum. The people here are really nice and very knowlegeable. I am fairly new here too. I am 47 and have SLE since childhood, but did not know it until I was in my 30's. My illness was came on gradually from the time that I was about 7 years old. I am glad that they caught it early for you before any damage had really occurred.

I am wondering if you are on medication? Have they put you on Plaquenil and NSAIDs for your joints? They can manage Lupus pretty well. Hopefully they will get you into remission.

Marycaine will be on shortly and she is really sweet and very very well informed on this illness. I just want to say welcome to the forum. Hugs, Kathleen Smile

_________________
Live one day at a time: It's easier that way Smile

Dx with SLE in 1994
Dx with Sjogrens 1994
Dishydrotic Eczema 1974
Severe Osteo-Arthritis

Meds:
Imuran 125mg
Plaquenil 400mg
Sulindac (Clinoril) 400mg
Soma prn up to 4 times a day
Darvacet prn

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

Unfortunately, lupus is such a strange disease that a lot of people don't understand it, even doctors, so it can be hard to diagnose - some researchers say that the average lupus patient may go as long as seven years to get an accurate diagnosis, so your broken knee, bad as it is, may have helped speed up the process for you. It's very hard for people who don't live with a chronic disease like lupus to understand how you can be okay one minute and flat on your back two hours later, or look perfectly healthy while you feel perfectly horrible, so we are often misjudged as hypochondriacs or "drama queens" as you put it. "But you don't look that sick" is a very common reaction from people who don't understand the disease - even your family and friends may react that way. It's important for you to educate yourself about the disease, and then educate your friends and family, so they understand that how you look and how you feel are often worlds apart, and if they felt like they had the world's worst case of flu 24/7, they might get a little cranky sometimes too!

It's good that you live in an area with a lot of great doctors and universities - it makes it much easier to get quality medical care. There is an excellent book called THE LUPUS BOOK, A guide for Patients and their Families, witten by Dr. Daniel Wallace, a well-known rheumatologist who teaches at UCLA. There is also a chapter of the Lupus Foundation of America in Sacramento - you can find more information at www.lupus.org - there are other members of this forum from California who may know of local support groups.

I know this is hard to cope with, especially in college. Once you start treatment, many lupus patients live pretty normal lives, although there are always changes and adjustments. Especially living in California, avoiding sun exposure may be a challenge for you, but it's important because UV exposure can trigger a lupus flare. Sunscreen is a must, even on cloudy days. If you are having difficulty with typing and using a computer, wearing compression gloves can help keep swelling down. Your doctor may also prescribe pain medicines, anti-inflammatories, steroids or other medicines depending on your symptoms.

It's important to talk to your advisor and your professors about your disease so they understand you will have up and down days - there may be ways they can help you adjust your class schedule and activities to minimize stress, which can make lupus worse. I know it's hard not to be stressed when you're dealing with midterms and papers, but you have to take extra care of yourself. A balanced diet, avoiding caffeine and alcohol, and getting plenty of rest are important - lupus affects your ability to resist infections and illness, and living in close conditions like a college campus makes you especially vulnerable, so this is something you need to discuss with your doctor.

Depression and anger are a very normal part of learning to live with lupus, so don't feel like there is something wrong with you, and don't be afraid to ask for help when you need it. It's harder to cope with illness when you're depressed or anxious, and problems can seem overwhelming. The emotional effects of lupus can be just as bad as the physical symptoms, but remember there are treatments available for both. I won't pretend it is easy, but you will find your balance and learn to cope. And remember there are always people here to listen and to care - sometimes just talking about a problem makes it easier to bear.

ejrifkin · Posted: Tue Oct 24, 2006 8:44 am Post subject:

thanks for your response

i just started plaquenil about two weeks ago and i take a ultracet as needed, lunesta, and mobic (ever fighting with the insurance about it....had to pay 200 out of pocket this month) as far as my lupus is concerned. oh, and also a pill to help with the rash. so yes, i've got the standard regime going haha