I know I don't have lupus but my mom died of it a little over a year ago so I feel your pain. I know you might have heard that before I reaaly do I used to not belive her. Her dr's had her on all different meds is that the med that you start with like 1 pill and by the time your to the end of the pack your taking like 6 pills a day you can talk to me I am a good listener

Thank you..It means alot that you would offer an ear. It makes me feel somewhat better that someone that understands would offer support. I'm sorry to hear that it took your mother, but i'm sure she'd be proud of you. You seem to be a wonderful person. :)

I've been diagnosed for 13 years and people still don't understand and they probably never will except here and in local support groups and your doctors waiting rooms. Take the oppurtunity to talk to people whenever you go to the doctors office or if you are waiting for blood work, you never know if you are going to learn something from someone sitting next to you waiting your turn. You should also take the time to go back through and read the posts in this forum that sound like they are of interest to you.

The bad thing about lupus is its different for everyone. It's different every years. It's different in it's severity and complexity with each and every person. I personally have a very complicated case which takes a cornucopia of medications to manage and then meds to manage the meds, but luckily, do not have major kidney or heart involvement. I on the other hand, have a dissintergrating back from osteoperosis, psoratic spodylosis, scoliosis, spinal stenosis, 3 compressed vertebreas, costochondroititis, chronic anemia, sjrogens syndrome, raynauds, photosensitivity, fatigue, fevers, butterfly rash and assorted sun rashes, irritable bowel, mouth and nose ulcers, geographic tongue, glossitis, vitamin-b deficiency, central nervous system involvement or lupus cerebritis, blurred and double vision, migrains and pain, pain, pain!!!!!!!

But on a brighter note I have been feeling better lately than in a long time.
I'm feeling optimistic and I hope you can feel optimistic about your future as well. May I also suggest going to www.Nationallibraryofmedicine.Org. You can look up lupus but also look up specific topics like kidney problems or whatever else is your issue.

Good luck

mia

Sadly, there are no support groups here in my area. Nor are there people with lupus that are there when I am when I go to the doctor. The only person really that I can talk to is my doc..And don't get me wrong..She's cool and all..But she doesn't have lupus. She knows what it can do and all that..But she doesn't really understand..And I only see her once a month (so far). That's why i'm kind of clinging onto this forum and reading about everyone. It makes me feel less alone, which helps a great deal.

Hi there,i am new to this site but not to lupus.
As said before lupus affects people in very differant ways.
I have had lupus since was 17 but went on to get married and have children...Even though I was told unlikely I would have children !
Be postive...Seek support on forums like this...And you need to make sure you have the best dr going.
I am lucky I attend st thomas hospital in london and have abrill local rheumy.
Please feel free to mail me for a chat anytime.
Heres to brighter days.

This is my very first time to know there is such kind of forum like this for all sle patients. I was so amazed and somehow feel relieve that my family is not alone having this disease. I dont have sle, but may father and sister have. At first im still young when my father found out that he have sle, causing him to stop to work. Since he was our only bread winner in the family, we had so much difficulty in financial needs. At that young age I witnessed how my father suffers day after day. It tearing me apart seeing him in bed suffering this pains he got. We cant afford to send him in hospital but rather he just manage to cure himself using other alternatives. Now im 23 years old and it was my sister turns to sle, I almost blame god why its happening to my family. I feel so much pity on her, she's still young yet sle takes her dreams and makes her future miserable. Now, me and my mother helps to provide our needs and also for their medication. But its not enough especially when the disease strikes, my father was under operation on kidney problems and next my sister suffers pneumonia. The bill is killing me.. I love my family so much and oh god I dont want to loose them. Please help me pray for us how we can cope up with this kind of situation..

I can say I understand and know what you are going through as well.Do you get the impression from people that they think you are out of your mind? Even when I was diagnosed,I had family say '' that's impossible for you to be in that kind of constant pain'' -crap like that or,''if you REALLY had lupus,you wouldn't have 4 kids,woman with lupus can't have kids'',or my ever favorite,''yes,I know,EVERYTHING hurts!'' My husband was a weenie the 1st couple of days,but once he found out what lupus was,he quickly changed his tune!(even got a new yukon xl sle) boy,he REALLY must have felt like a shmuck! Even my mom was ignorant (verbally)and she has secondary progressive MS-yeah think she could have been a little more supportive in the beginning! Sometimes,others made me second guess the diagnosis,things like,''well,once they fix you all up ,we'll talk about what is wrong with me''...yeah,that wart must really suck dude!(literally,it was a wart ). I'm sorry to have rambled,but I do understand the physical and mental anguish,it feels like I'm in for a good battle with this lupus beast,I did beat cancer,so this has to be easier than those days,at least I hope so. YA'all take care! with hugs and kisses and alot of prayer!!

Hi! I've read your message. You said that nevertheless the lupus you have children. I'm 21 year old, and I also have a lupus during 6 years. My hormone dose is not big - 4 gram per day, but what about the children. Can I take hormones during my pregnancy? How harmful can it be?
Thanks a lot.

I have had lupus for six years I was in my late 30 when told i had the desease i already had my kids I undestand completely. It tookt a year or more to figure out what I had,they were always cutting on me. It wasn't until i caught phenmonia that they dignosed me. No one in my family has it I have been to hell and back it destroyed my family. My husband left me before i was dignosed. 3 years ago i had blood clots on the brain from that i was in the hospital for two months then i had to learn how to walk all over again, i was in rehab for two months my children were separated from each other and me before the blood clots i ran fever every day sometime high fever i worked every day with a temp. After I came home my job did not want me to come back they made me retire that was heart breaking for me I love my job now im living off disability just getting by. My desease is also compilcated I be in remission for awhile then things start going wrong I so sick of taking steriods i could choke someone. I have good doctors very caring for everything they try and fix something else go wrong I never like taking medicene, i have take so many pills i lost the hair cut it all off it grew back, lost the weight gained it back several time going to the doctor tommorow hope they will take me off predisone you will be depressed a lot lupus causes depression ask your doctor for something. My advice to anyone that reads this is to draw closer to god he gets me through this he will get you through it. I should be dead now because at one point my doctor gave up on me when i was in the hospital right after the brain surgery. But i had a praying mother that is a true believer. My family was great the keep with everything that went on I have 4 sister and they understand. Thank god for family. Just remember God is the key.

hi,
sorry your feeling so bad.I know exactly what you are feeling. I was dgnsed 4 years ago. Although I had been tested for it since I was a teenager,it didn't read positive until I was 45. When it truly hit I was completely engulfed in three weeks. I had to wear braces and have a walker. I was an athlete, riding my bike 60 miles a week and lifting heavy weights before it hit me. Needless to say it was very discouraging for me. I thought that this was going to be the rest of my life and what good was it. But fortunately I do have a strong support system. It is important to find yours, even if it is just on this site. Today I don't have the braces and I only occasionally use a cane. I even road my bike around the block the other day. (a small step I know but a step nevertheless) I like you had hung on to the thought of remission. But I found that it was just depressing me. I instead begin finding things I could do, Like writing. It was a great outlet. In other words acknowledge that this new "person" in your life (lupus)is here to stay and somehow learn to except it and live with it. You will be surprised that the more you acknowledge it the more you open yourself to possibilities. For me acknowledging it was simple things like taking a nap. To complicated things like knowing I needed help getting dressed on occasions. As far as people understanding...in the long run this is a battle you do alone. Don't be angry that they don't understand. There is no way they could. I said yesterday to a friend that in a strange way I can be grateful for this disease because it gave me the opportunity to get a good look at my own personal character,and strength...and it was good. I never would have seen it otherwise. good luck you are in my thoughts

hi =)

I'm 19 years old and have had Lupus for 5 years now. I don't know anyone else with Lupus =/. This is the first time i've actually seen a forum like this. I know how you all feel about being alone. Yeah family is always there and maybe some close friends but no one really understands what a person with Lupus is really going through. I'm hoping to attend my first Cure For Lupus walk on October 24th in Battery Park and possible make some friends with people with Lupus.
With all honesty i used to be ashamed that i had Lupus. I used to be scared to tell people because people are so stupid and insensitive sometimes. I was scared they would think i was contagious or some other genius idea that would pop into their heads (just because they didn't know of the disease). But now i am much better. I have learned to love myself no matter what i have or what i look like, etc. It did take a long time. I would get so depressed over the disease. I really grew to hate myself. But, through really rough times, i made it through. I've learned to just have Acceptance. =). This disease has really changed me, and for the most part i am very glad. I've grown to be a much stronger woman and confident. I have a lot of perseverance. Of course the medicine i take daily reminds me i am fighting a losing war, but everyday i am alive i am winning a battle! =). I pray for everyone everyday. If anyone ever needs someone to talk to about anything whether its a problem, depressed, or something great that happened please don't hesitate to text me(haha) =)