New here, from Maine
I'm Aleceia, I hone from Maine and I tested positive for systematic lupus through ANA just recently. Although I also had a higher than average/acceptable Monocyte level, and elevated Chloride and Sodium in my blood according to my bloodwork papers(although I certainly could have been dehydrated at the time, I'm not totally sure).
I had blood tests done because I have really thin hair on just the top of my head, my doctor did a huge blood panel and ANA came back positive with a 1:80 dilution with a Homogenous pattern, and to be honest I'm sort of scared of what could happen.. My mom has fibromyalgia and they were considering her to have Lupus instead, but she comes back entirely negative.
Everything else like my lipids, all my other vitamins, etc and cholesterol were either normal or absolutely perfect. I have really great blood pressure and blood sugar, stuff like that, but just a lot of pain.
So I guess now I'm here, understanding why I'm in so much pain all the time from my heart/lungs to my skin and everything in between.
Hopefully I can take part in this forum and get things figured out, I'm not really sure what to do because I'm not really sure what Maine does for people like me who are young and have SLE.
But hello regardless.
one of our regulars here is also from maine, rob.
you two should get to know each other.
i have lupus and fibro, so i am familiar with what your mum goes through.
a couple of interesting things i have learnt here.
officially 2% of lupus patients get it heredically. this site suggests that this figure should be a lot higher.
there is quite a few people who have lupus and NEVER have a positive ana test.
please take the time to read a few of the older posts, they are our personal experiences with lupus.
Welcome to WHL. I'm Rob, and as Steve mentioned, I'm from Maine too. I live up north on the coast near Searsport. I was diagnosed with SLE in 2004. My mother also has Lupus, and was diagnosed about 23 years ago. She lives in Bangor.
What part of the state do you live in? With regards to what sort of help you can get as a resident, you may be eligible for Mainecare. It's something worth looking into, as you can get most, if not all of your healthcare costs and meds paid for, and you can see any Dr. or specialist you like.
I know it's scary to be diagnosed with this thing called Lupus, but try not to worry. With proper meds and lifestyle changes, a person can live a long productive life with Lupus.
I'm looking forward to getting to know you!
My mom has tried a lot of things, but the state of Maine doesn't recognize Fibro as an actual condition for SSD or anything.
It's pretty ridiculous with how she can't even move the majority of the time she's awake, she's been trying to get SSD for about a year or two now but they keep making things difficult and declining her.
Thanks for the welcome.
It's nice to see a Mainer on here, I don't really see many people from Maine on the internet. I live in Scarborough, but I'm in VT right now for the rest of this week. I sort of took a vacation from my house because it's stressful living there with my nit-picky landlord/grandmother I can never please.
I'm already on MaineCare, but once October comes around I won't have MaineCare because I turn 21 on the 8th. Unless having Lupus cancels that age limit off, I only have about three more months with healthcare I can use which makes it a little bit more scary because I'm not sure what's been injured or not internally. I've had quite a few internal pains along with my joints, I know my joints are already screwed up as it is. I just deal with it I guess, I feel it all the time it doesn't affect me doing tons of things all that much because I know my pain limits. I still go hiking, swimming, out in the sun. I still run and walk, but driving a car for more than two hours kills my knees and I love traveling so that sucks.
I'm just not looking forward to certain things like more hair loss or more weight gain, I can't really afford to gain weight anymore. I've been the same weight for like two or three years now.
Welcome to WHL. You will find a lot of information and support here.
hello aleceia welcome to whl i have lupus which i inherited from my mother and my daughter inherited from me in some of us this is the case my mothers results have come up negative but she still has lupus mine always come up positive and so do my daughters but hers is not as bad as mine either is my mothers . it just happens that way sometimes. look forward to getting to know you .