Newly Diagnosed and trying to be optomistic
Hi everyone. My name is Angie and I'm 25 years old. I was just officially diagnosed three weeks ago with Lupus. I was treated for juvenile arthritis as a teenager and tested every few months for Lupus, but never fully developed it, I guess. After being on Naprosen from ages twelve to nineteen, I went to a kinesiologist and he changed my diet. For five years I didn't have any symptoms and I thought I was in the clear.
Then all the sudden a year ago, I started experiencing strange seemingly unrelated symptoms: thyroid problems, constant eye infections and urinary tract infections, pain in all my joints, hair loss, mouth and nose ulcers...I finally got serious about seeing a doctor in January and after two months of tests, I knew I had Lupus. I had read the symptoms and it felt like it was explaining everything I was experiencing. But I had to convince the doctor. To make a long story short, I finally was referred to a rheumatologist, who took one look at my purple, swollen hands and feet and said, "I'm 99% sure you have Lupus." Blood test just confirmed it.
It's been really hard to deal with because I have two children, one 22 months and one 3 and a half. There are so many mornings it takes me hours to get out of bed and my hands are so sore I can't even change diapers. I find myself crying all the time and feeling desperate to talk to people who understand. My husband is military and we are trying to get restationed near family, but for now we are all alone and his chain of command is giving him a hard time. At least we have good medical coverage, especially since I'm scheduled for kidney surgery in a few weeks.
I was put on Prednisone and Plaquinil right away, but am having trouble with the side effects - bloody noses, insomnia, migraines, stomach cramps - so I'm slowly getting off of it and starting Imuran. I was also put on Salagen because the first two medications are giving me severe dryness of the mouth, nose and eyes. My teeth and gums are extremely painful because my mouth is so dry. I hate being dependent on prescriptions but can't imagine living without them right now.
I'm trying hard to be optomistic, but sometimes I read the horrible experiences other Lupus patients have and think, "I can't live like that." I feel like I've probably had Lupus for awhile and I was able to have two children with no complications, so it gives me hope that maybe my husband and I can have another one. But at least I had two when I was young just in case.
Anyway, I'm glad there are others out there who understand me for a change. Thanks for listening
a good attitude can do wonders. My theory is that it doesn't do me any good to be sad... but how can I use this experience to change mine and other people's lives? Everyone here is fantastic and we all understand.
Welcome to our forum. We are so glad that you've found us and hope that you will find support, understanding and information here.
Most of us have come to the conclusion that we were suffering from lupus for years before we were diagnosed. However, no one could tell us what was wrong and most doctors treated us as if we were crazy or told us that it was "all in our heads!!"
Anyway, I am also glad that you have become serious about managing your health and taking control of your health care! Keep learning as much as you can about Lupus and do not be afraid to demand that your doctors take you and your symptoms seriously and treat you accordingly!
I wish you the very best!
Peace and Blessings
Thanks for the welcome and I really appreciate the chance to get advice from others out there like me. I've been coming here every day reading all the new and old posts, just drinking up all the information. I've read all the text book stuff out there about Lupus, but it's nice to read about all the little things that matter too.
What a difficult time you're having at the moment - I hope we can offer you some support and comfort, just knowing that there are people "out there" that really understand can help a lot.
Many very gentle hugs, and hopes for a day with happy children and no pain ~