View Full Version : Hey everyone I'm a new member

11-05-2008, 02:45 PM
Hi everyone,

My names Kathleen (or Kat) and I'm 19 years old. I was diagnosed with systemic lupus June 30, 2008 when I was 18. I had been suffering from significant joint pain and inflammation along with fatigue. Lupus prevented me from playing softball (my life) my senior season because of the symptoms and the doctor I had been seeing had overlooked it. I then went to a doctors appointment at Brigham and Women's Hospital in boston where I saw Dr. Austen (such an amazing guy). He first diagnosed me with polyarthritis and then said that I might have rheumatoid arthritis, writers disease, or lupus. He put me on prednisone. My next appointment confirmed that it was indeed lupus and thats when i began plaquenil.

I must admit that the beginning was probably one of the toughest roads I have ever been down. I didn't want to talk to anyone about it and felt so alone...for the first time in my life I truly had an understanding of what being petrified meant. I didn't tell my best friends until two weeks after my diagnosis because I did not want to be treated differently or judged (I told them because they thought I had been blowing them off when in fact I was sick in bed because of the plaquenil). On August 22nd I had my appointment to see whether or not I would be in remission....I had improved a great deal but unfortunately I wasnt at that stage in recovery. This brought up the huge question of whether or not I would attend college this fall...well me being me I was like "of course I will!"

Adapting to college life itself is hard enough but I've learned that it's even harder when you have an autoimmune disease. The fatigue I experienced (and still sometimes experience) is so intense...especially factoring in pulling all-nighters for exams and papers along with trying to maintain a social life. I was frustrated with the fact that I had begun playing rugby but then couldn't continue because of the symptoms (I am aiming to play in the spring season though!) My current obstacle is running. I have always been a fanatic of going for runs however my legs don't seem to want to cooperate so I'm going to try biking and the elliptical. It was hard to open up to my new friends about my disease but then I began noticing that talking about it became easier. I have several friends now who are very supportive. It's still tough because they don't know exactly what I'm going through but my faith has truly become a guiding light in my life.

This Friday (November 7th) I have another appointment to see whether or not I'm in remission. The good news is I recently lowered my prednisone dosage on October 17th and have not had any pain or fatigue. Also, when I asked my doctor whether or not I should have bloodwork prior to my appt. he said no.

I'm really glad that I was emotionally ready to join a support group. I have to say that I have always wanted to ever since I was diagnosed but I just wasn't ready. I'm really eager to meet anyone who can relate so please don't hesitate to talk!

11-05-2008, 03:05 PM
Hi Kathleen,
Welcome to the site. I am glad that you found this site. There are a lot of nice folks that come in here. My name is Kathleen (Kathy) and I have SLE Lupus and have had it for 44 years or more. I am glad that they were able to diagnose you pretty quickly before the disease had a real chance to cause serious damage. I hope that you keep posting.


11-05-2008, 05:02 PM
Welcome to the site Kcflannery

Keeping my fingers crossed that you are in remission. I've not been diagnosed, I'm waiting for a new rheumy or for my current one to get a clue.

My mother had lupus and my sister has it as well. I've had symptoms since I was 19 yrs old (48 yrs old now). My sister has been in remission for lupus for many years now, and just starting to show signs of coming out of it.

Did you get adjusted to the plaquenil? My family doctor told me a great trick for getting around the upset stomack and diahrea. I take both pills right before bed with a small serving of yogart. So I sleep through the worst of it and have no upset stomack.

Nice to meet you and look forward to your posts.

11-05-2008, 05:24 PM
Hi Kat :lol:
Welcome to our family. I do hope that you are able to achieve remission or, at the very least, get your Lupus to a manageable state that allows you to do some of the things that you enjoy.
I think that it is a good idea that you've decided to forgo running for elliptical. We have to be very careful not to participate in activities that are jarring on our muscles and bones. Doing so can aggravate many of our symptoms and exacerbate inflammation. It is very important that we exercise regularly, but we are cautioned to only participate in low/non-impact activities (like yoga, swimming, bicycle riding, walking, pilates, etc.)
I hope that you are able to resume your studies. If it becomes too difficult, think about joining your school's disabled student union. They can offer many suggestions as well as assistance to help you continue your education without having to sacrifice too much due to your illness.
I am glad that you found us and that you decided to join us. There are many people here who are filled with information, compassion, understanding and support.

Peace and Blessings

11-05-2008, 05:48 PM
thanks everyone for the warm welcomes and the advice :P it really helps talking to people who understand and have been in a lot of similar situations....its remarkable! I am really looking forward to getting to know all of you better and other people....I guess the bright side of having this disease is that you get to meet amazing people :D

11-05-2008, 06:18 PM
Hi Kat...

I am Oluwa...welcoming you with a warm tight hugs...

Finding a place, finding friends who support us, to feel safe is such a great find. I am happy you found them near you and here with us.

That is indeed great news, lowering the steroid without symptoms resurfacing..hugs. Maybe no prednisone is just around the corner...that would be grand. A goal many try to achieve and become successful too.

Sometimes we become lax in caring for our body when we are in remission...stress, drugs, eats, exercise, rest...that our symptoms come alive Maintain your regime, drug dosing times whether symptoms free or not...

Let us know about your appointment Friday..here's to good news...hugs.

Again welcome to this wonderful safe place...where you can be you, your pain, your happy, your disappointments...joy or frustrations. We are here for you..

Hugs..be well,

11-05-2008, 07:39 PM
Hi there Kat! How are you? Its a good thing that you were diagnosed right away, so you can get treatment right away. I was very sick in the very beginning for a month with fevers of 102F on and off all day, fatigue, weakness, loss of appetite, rashes, aches and pains all over, swollen fingers... My primary doctor prescribed me all sorts of antibiotics, thinking that I had a bad flu. It took me a month, and a new doctor, til I was diagnosed with SLE Lupus.

Only my family, boyfriend, and my closest friends know about my diagnosis. I dont want anyone from work to know, because I dont want to be looked down upon or treated differently. Because its a secret, I try to put on a happy face at work, even during the days I'm feeling miserable. :(

I've been on plaquenil since my diagnosis (Feb 2006) Its been helping me a lot. But it does take a while to kick in (maybe about 5-6 months). I'm glad you're weaned off of prednisone. I was on prednisone for a short time too.

Sorry for the long post, got lots more to share.

So glad you found our site. I was scared, alone, and lost before I joined this forum. Now I have a new family who I can turn to with all my questions, concerns, and if I just want to cry and vent.

Hope to hear from you soon. Stay well. :wink: