First off, I'm in remission and have been for a little while now. I'm not sure how long it'll last, but any day I feel good is one I cherish. Secondly...

I got married!

My husband is in the airforce and has two wonderful kids (a son, 10, and a daughter, 7) from a previous marriage. We got married on January 4th and he deployed to Qatar two weeks later. It was really difficult with him gone. Thank God for emails and the occassional phone call. My father passed away suddenly while he was gone, and the Red Cross sent him home on Emergency Leave. Thankfully, he didn't have to go back. I'm grieving, but his support has been amazing. We're preparing to move to Japan now. We'll be stationed there for 3 years.

I'm not on any new medications. The Plaquinil is still the best thing for me. The only thing I can complain about is that some days I'll feel very fatigued, and I feel bad because the kids want to play, but sometimes I just don't feel up to it. But my husband and kids know about my health and are very supportive and understanding. In fact, someone in my husband's family has lupus, so I didn't even have to explain anything.

I just wanted to let everyone know what I was up to, and also to give a head's up that when things seem their worst is sometimes when everything turns around. I hope everyone is doing well. I have a new email address, too. It's ColeyRitz@aol.com

Also, you can find me very easily on Facebook under the name 'Nicole Ritz'.

Have a good night!!!

So I'd like to ask for help here. I have two topics that I want to use. I've started writing both of them but I don't know which one would be more effective in describing how I changed due to them. So would you, my lovely Lupie Family, help me?

My two topics are:

1. Finding/meeting my Lupie Family here on the forums (of course~)

2. How not having a father figure and how "dad" is an insult in my eyes (reasons behind that and how I'm who I am because of what I saw and whatnot)

Meeting you guys has given me hope, courage, and the ability to really admire others. You guys go through so much more than me, and yet all of you are so strong. Your personalities shine through in your posts on the forums, I sense warmth from this family and your guys' kindness know no bounds. This family and it's members are so strong, despite the hardships, and I really admire you all for that. I learned that I should be thankful for who I am, how I am, and what I have. I should be thankful for the little things, the small things that often anger me because not all of our Lupie members have the ability to do what I do, and vise versa. I've learned and grew thanks to meeting everyone here. I'm thankful, beyond words, to have met you all.

My second topic is how I'm a stubborn child. I grew up around men who either denied they were my "father" or abused and sullied the role of the "father". To be honest, donor insemunation children have no father, technically -- as the blood father isn't held responsible for the children birthed with the donated sperm. So, from the very start, I was fatherless. It didn't help when people came and left, further destroying my image of a "father". Because of past events, if I called someone a "father", I would be insulting them. I do not want a father figure, nor do I need one. I saw my mother struggle alone and with men who treated her like shit. She was, and still is, a very strong woman. From her, I learned -- and saw with my own eyes -- a woman doesn't need a man to be strong, to get through life. All she needs is courage and determination. That's it. I don't waste time with my male peers (mostly because the boys my age in my generation are all gang wannabes down here in the desert) because I know I don't need a man to get far in life. I have better things to do. Bigger fish to fry. I want to follow my dreams, not some guy to bed. I don't want a family, children of my own. I can be strong without that. But... it's also because I fear I will not be able to raise those children I may birth correctly. What if I hurt them somehow? What if I marry the wrong man like my mother did so many times before? "Children grow up to be their parents", this quote is something I wish to defy. I want my mother's strength, her iron will, but I do not want to follow in her steps and fall down into the clutches of men who will only hurt me.

Gah I suppose I got sidetracked. Anyways. I'm stuck with what to choose. Disclosing this information to my teachers and class isn't an issue. To be honest, what opinions they may have of me because of these two events... I don't care to hear them. What's done is done, the past cannot change. So... I shouldn't worry about opinions like that.

So... any seggestions?

Hi, my name is Jesselee and I'm 17. I was really happy to find this site. I've been having problems for so long that i dont even remember when it all started.

When i was really little i would continuously get urinary tract and bladder infections. i was told this happened because i held my pee alot and waited to go to the bathroom too often. (now im wondering if its because of lupus)When i was about 12, i got a severe kidney infection and was in the hospital for awhile. Along with those urinary problems, i also was experiencing varying degrees of nausea and would throw-up ALOT. My doctor didnt really know what was wrong, so he told us that he thought the nausea was caused by Acid Reflux. I went to a gastro doc for along time (he was a jerk)and had test after test. I would get like a stomach flu and be sick and throwing up for weeks when it should have been days. I would end up in the hosiptal time after time. By the way, i also have scoliocis and through the years had back pain, which we thought was because of that.

Anyway, when i was about 14 i started experiencing extreme pain in my upper back. We found that my galbladder wasnt working like it should. So, i had surgery to take it out. My freshman year of high school i got really sick with nausea, constantly throwing up, and extreme fatigue. I was also experiencing mild joint and muscle pain, but that wasnt the foremost on my mind at the time. My gastro doc did test after test but nothing came up. He thought i was pregnant and didnt believe me when i told him i wasnt sexually active. So we tested and i wasnt. No surprise there. Then he told us that he thought i had irritable bowl syndrom. (he couldnt find anything really wrong) Eventually i went to a new family doc and currently i had been experiencing moderate to severe joint and muscle pain. Fevers at night. Headaches and migraines. Joint popping and cracking. Constipation at all times. A faint to moderate red butterfly shape across nose and cheeks, but not raised or bumpy. Extreme to mild Fatigue. If im forgeting anything ill tell u later. Oh and a positive ANA. My famliy doc thinks i have lupus based on symtoms and ANA but wants a specialist to see me. So, in August I have an appointment at Mayo Clinic. Oh and depressed and on meds for that. Wasnt sleeping either. Anyway thats my story....

thanks for listening

JLee

Just wondering how other teens or anyone (I'm 18 btw) deal with this...

I was diagnosed with SLE Lupus in March 2010, just 2 months before my 22nd birthday.  I honestly can say, I have never heard of the disease before my diagnosis. I am really having a hard time explaining it to my friends and family being new to it myself. All through high school, I would sleep and sleep. I never wanted to do anything besides lay around. My excuse was..I stayed up too late the night before, etc. Well that contiued into my adulthood. I was in a snowmobile accident in Jan 2010. After that I started experiencing swollen joints, to the point where I could barely walk, I couldnt bend my fingers, get dressed, or put on my seatbelt. It took them 2 months to diagnose me with Lupus. My rheumatologist said she had never seen DNA antibodies as high as mine which was 1800, and my ANA was 1280. They think I have always had lupus, but the trauma to my body from the snowmobile accident made it noticable. Basically, my accident was a blessing in disguise, I probably would not have known (at least for awhile) that I was suffering from lupus.

I am doing pretty good now, I have a great doctor! I'm just having a hard time explaining to my friends and family that I'm too tired to go for a bike ride or out to eat, etc. I really struggle with fatigue.

Thanks for listening  

My name is alexa and I'm 18..I was diagnosed with SLE back in February but I believe I've had it for much longer than that. The doctors never knew what was wrong with me, they just dismissed my ailments as it all being in my head, butI guess it took a horrible butterfly rash for the doc to test for lupus.and now here I am.

So far, it's been a living hell.

When I was 14 I was diagnosed with Obsessive Compulsive Disorder and Chronic Depression to throw that all into the mix.

I won't bore everyone with the details in this section but I do have a lot of questions and confusions...so I'm hoping I can find the help and support I need here, because even though I do see a Rheumatologist, she doesn't have SLE so it's hard for her to connect with what I'm going through.

I hope I made sense in my introduction, the wolf is affecting my brain and train of thought right now I think lol

Also, how did you lose it, if you did lose it? Please don't just say diet and excercise, I need specifics. Thanks!  Sorry if I posted this in the wrong category. :S

I have had one relationship other than this one after my diagnosis, but I was much healthier then than I am now, so I still find myself at a loss for what to do.

I guess my question is: How can I contribute to the growth of this relationship, even in my too-tired-to-do-anything-but-take-a-shower-every-other-day state? How can I be a 'good girlfriend' when I am so limited?

This guy is really great and I think we might have something real. But to really figure out if we're right for each other long-term, I have to be an active participant in the relationship, and I don't have the energy to be an active participant in anything. I'm just not sure how to handle it.

My specialist is at Denver's Children's Hospital which I know is one of the best in the world but my doctor refuses to test anything more than my ANA but I have heard there are other test that can be done, is this true and what are they?

Second is it true that ANA test can come back false negitive?

Third, how do you all cope? I was out in the sun last summer and became so sun burned on my chest I almost had to get a skin graph ( I was wearing 50 spf sunscreen but what makes it even worse I was out side less than two hours at my pool), Im scared of my world and my body. Every time my chest starts to hurt Im going Oh my god do I have fluid around my heart again? I can barely walk because I feel like my bones are shattering every step. I know so many people have SLE Lupus by god I feel like Im alone in this fight even more so because I dont even have a doctor backing me up or even trying to find out was wrong.

 So can some one please help me and point me in the right direction, I'm really really scared and I dont want to be alone in this battle anymore.

But since I haven't seen my specialist yet I do have many questions so I am hoping I could get a few answers.

1. I heard that it's better not to get piercings or tattos when you have Lupus since you are more prone to infections. I have both my nose and naval piereced, would it be wise to remove them now and be rid of them?

2. Also I heard that you should stop taking birth control with this disease, so far since I have just been diagnosed I'm not on any medication that would conflict with it but would it be good to not take birth control; I am taking the depo shot since August which may have caused a flame in my disease that got me feeling worse.

3. Last but still with many more questions, does this disease affect pregnancys? I heard many women with Lupus expierence alot of miscarriages.

Thanks for taking the time to read!

It really helps to talk to others, especially young people, who are dealing with similar issues.  It's also nice to hear from people who have been batteling this for many years... any helpful advice or similar situations would be nice to hear from you!

-Jessica

Just a quick message regarding a new lupus website and on-line magazine:

The Lupus Magazine

We've established this website as a fresh, up-beat lupus site on the web.  And we'd love for younger lupus patients to express themselves creatively by writing for us.

Being a recent (mature aged) student myself, I know how the assistance offered to me throughout my media studies was a great help - and it was a relief to finally have my articles and photographs published in print and on-line.  I also know a great deal of younger lupus patients have had to defer their studies at times due to their lupus.

So if you have an interest in writing original and positive lupus articles, we'd love to hear from you. 

Take a look around the site and you'll get an idea for the 'feel' of the magazine.  You'll also find all the details re: writing for lupus there.  However, if you have any further questions, feel free to send me an email.

Regards as always and best wishes, Geoff~

http://www.thelupusmagazine.com/

http://thewideworldoflupus.blogspot.com/

I wonder if others with lupus agree this is what I have.  All of my joints ache and swell.  I can't sit for too long without the discomfort in my knees or back being too much to handle.  I crack my back almost any time I move.  I bruise very easily and my hands become red in heat, cold, or ... really any time they feel like it.  I am addicted to caffine, it's the only way I can stay up without falling asleep.  Please.... does this sound like you?

-Kaitlin.

C.H.O.I.R. Stars has decided to change dates for camp to August 6th, 7th, and 8th in Brookfield WI. We are bringing in all of the same great teachers, and are providing the same programming with field trips. The registration fee is $200, but only $175 if application is in by April 15th. Local campers are not required to stay at hotel. It is our mission to provide arts enrichment to teens facing chronic illness. All of our board members have spent their lives dealing with chronic health conditions. We look forward to meeting our campers and their families this summer! Feel free to contact me with any questions you may have. I'd be more than happy to answer them on this board, by e-mail - sami@choirstars.org, or (262) 672-4647. You can also check out the website at www.choirstars.org.

Sincerely,

Sami

Founder & President

C.H.O.I.R. Stars

Any comments would be appreciated.  Thank you!

Tracey

Leslie

I'm just a mom with Lupus. I have a teenage son and a younger boy. The teenager is healthy, the younger one has different overlapping autoimmune issues which he has battled all his life. I see what he goes through and I try to give him a balance of support and also letting him 'deal' because that is what he needs.

I attended a parent's support group last night. As I sat there listening to all the parents speak on behalf of their children ( who were in another room) I was amazed at the spirit within these kids, as told by their biggest cheerleaders - their parents.

As a Lupus person myself, I know what goes on. I get it about the meds, the weight, the pain, the limitations, the crap. But for you....in school, with tests, finals, growing up, friends, and all that is involved with that.....and learning about your illness and meds and doctors.......wow, each of you has my heart felt respect. Not my pity, mind you....because you don't need it. But respect, yes.

Rock on...

((( HUG )))