Feeling pooey!

[didi]

hey, this is my first time on this site! well actually first time ive ever talked about my SLE to anyone really.

im 18 and was first diagnosed with it when i was 7. been on prednisolone and methotrexate. only problem being on steroids is that it stunted my growth in more ways then 1! the docs took me off steroids yrs ago now and i stopped talking methotrexate on my own not that i took it in the first place! it made me wretch and feel sick every time i tried so i didnt bother. felt fine in myself and thought i could cope without medication.- i hate teling people what ive got. it restricts u in everyday life. i used to dance and all sorts and then quit cos i felt sorry for myself basically- didnt want to help myself in any way!
im ill again now! ive got really bad chest pains that i seem to get every year but is worse at the mo. it hurts to lie down so i have to sit up and try to sleep. its weird cos at first it felt like it was heartburn and have been to the docs 5 times and they gave me medication but none worked. i think im havin a flare so will have to see the doc soon. its lasted three weeks now and im depressed! im crying all the time, so tired and feel weak and get angry very easily! its annoying cos i have a college excursion coming up and i really want to go. its a week in paris with all my college friends and should be really good.
it just brings you down wen u think the disease is under control and go to a new college and think to yourself i dont have to introduce myself with my illness because they would never know! but now since im ill again ive had three weeks off college and im gonna have to tell my friends now. ive only known them for half a year, i get on really well with them but wonder how they will react. my old friends are used to it because they grew up with me having it but even they dont know what my illness reallyis and how it affects me. so generally feeling like poo! was taken into hospital two weeks ago because they thought i had a blood clot on my lung because of the pain. didnt know you could get that but found out that the blood is thicker with SLE. turned out its not but still dont know what it is.

sorry bout this long winded essay! i think i just needed to get 11 yrs of being annoyed and felling crappy and worrying out of me! it will all sort itself out im sure!
i think ive done enough complaining for the next 11yrs aswell!
i dont usually feel sorry for myself- im usually happy because i could have it much worse- at least i can move even if it hurts and at least my brain is in full working order! well at least i think it is!
i think ive finally realised that im gonna have to look after myself and am looking at more information about SLE because i have to admit i didnt really know what it was even tho ive had it for yrs. i suppose i thought it wasnt my problem and that its other peoples faults. its no-ones fault i no but sometimes i feel as if it is!
i am worried bout future life aswell like when im older and have children and grandchildren- if i can and its safe. i want to be a normal active mum but am worried that i mite get worse. jus take one day at a time! and ive realised that you should grab every opportunity given, live life to the full and if u wanna do summat do it and dont regret it!
style_emoticons/<#EMO_DIR#>/Thanx.gif
i didnt realise how long this was! am very sorry!

[alobreto]

Hi, didi! style_emoticons/<#EMO_DIR#>/wink.gif
I'm an old lady, but can relate with your experience of taking a med that seems to make life worse and then stopping it for that very reason! style_emoticons/<#EMO_DIR#>/crying.gif It can seem like you're between a rock and a hard place with no easy solution. style_emoticons/<#EMO_DIR#>/sigh.gif

You didn't mention plaquenil, and I'm wondering if there is a reason you aren't on that. It seems to be a mainstay of lupus treatment for many of us. Even though it can take months to kick in fully, it can really be a godsend once it does. It can actually change the course of the disease for the better and may delay or even prevent serious internal organ involvement.

Most people experience few side effects from plaquenil other than some minor tummy trouble or gas, and that usually goes away on its own within a few weeks. If the tummy trouble is too bothersome, you can cut the dose in half for a few weeks and go back up to the usual dose once things settle down. style_emoticons/<#EMO_DIR#>/ok.gif The brand name drug is often gentler to your system than generic, so that's an option, too.

It's no wonder you're depressed with all that's going on and feeling so bad all the time! style_emoticons/<#EMO_DIR#>/hugbetter.gif I'd think you were odd if you weren't! style_emoticons/<#EMO_DIR#>/ohmy.gif

Many of us take an antidepressant, and in addition to helping with mood problems, they can also help other lupus symptoms depending on which one is used. The older ones help with sleep problems and chronic pain symptoms. The newer SSRI class help increase alertness. Whichever symptoms are more bothersome in your life could help the doc determine what kind would be best to try. And if one drug doesn't work after a few weeks, there are several to try and it's worth the trial and error to get some long term relief!

I wish you well as you go forward!
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[RAD1]

Hi !!!

I hope you don't mind a post from an older person dxed with sle. The chest pain and not being able to lay down, pain when taking a breath, muscle and joint pain. This all was what was on-going with me before I got my DX several years ago. I thought I had a bad case of the flu and it was getting worse after several weeks. I finally called my gp (gynecologist ) actually, and she ran lots of tests on me to come to where I am today. Taking Placquinil 200mg twice daily, mobic, and one lortab daily to help with the pains. I still do not want to say that I have Lupus, I know I do, but it's just how I am dealing with it at times. It helps me fight I guess. I hope you go ahead an get treated for it, steroids might help get it under control so you could go on your trip and then perhaps the Placquinil can start to helping. I don't know but just don't do nothing sweetie, you're so young and it makes me so sad. You must be a fighter or you wouldn't have gone on to college. You don't have to admit to having anything, but you do have to deal with it, it isn't anything anyone wants to deal with but you must. Enjoy being young as much as you can, get the help your body needs and just do the best you can. That's all any of us can do whether we have Lupus or not. A chance to see Paris, you bet I'd go find me a Doctor who would help me be able to do that and to live as much of a productive life as I could. You sound like a fine person, dealing with alot of c*#p that life has delt you. It isn't your fault or anyone elses', do what you need to do to take care of yourself. You are worth it. This auto immune stuff can really get a person depressed, very depressed. You have every right to feel like you are feeling, it's understandable by all of us dealing with it.
I know that I have had sle for a very long time yet I have manage to raise three boys, age 33 yrs., 20 yrs. and 17 yrs. . Gee, I guess that makes me about 55 years old doesn't it ? style_emoticons/<#EMO_DIR#>/huh.gif

Will be thinking of you and hopeful that you will get to go see Paris!

Ruth

[chantal]

hey im 21 and I feel worried about all the same things ~ about having kids ~
everything i wanted to say has been said by the last 2 posts so dido! ~ i hope u feel beter soon
style_emoticons/<#EMO_DIR#>/wub.gif chantal

[edcdancer]

Hey....dont feel bad...its normal to be feeling pooey...i feel pooey myself!

My name is Melissa...i am 16 and i was dx a month after my 16th birthday! this past october 20th!!! Its been hard i ammit but ill keep fighting,...Im a dancer...i recently had to quit over half of my classes due to lupus...but its my life. I couldnt completly give it up. Im sure ur friends will react fine...if they truly care about you they will look past the disease. they will see u for you! Im in a bad flare also...and on some of the same meds too...there are others but the list is too long!!!

Ne ways...if u ever want to talk about it...you should let it out...it will do u some good!!! we can talk if u would like!

Thinking of you

Mel style_emoticons/<#EMO_DIR#>/flowers.gif

p.s i have msn if that would be easier to talk?