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Samantha.mc
06-12-2012, 06:10 PM
Hey all! I'm new to the site! I'm 23 years old, from Canada, and I was diagnosed with Lupus at 21. I have become such a hermit since becoming sick and I really need to put myself out there again somehow, so here I am!

I don't know about anyone else but I am a terrible patient. I blame the prednisone all of the time for my terrible memory! (I take prednisone, imuran, and plaquenil - two of those I don't think work at all). I am lazy when it comes to taking pills - I pay if I don't, forget everything, and I strongly dislike bloodwork... not the act itself but paying the parking meter everytime I go to the clinic. I think a chronic diagnosis should go hand in hand with a permanent hospital parking permit....

I haven't adjusted to my new way of life and I don't know that I'm willing to. Instead I just get angry when my body refuses to let me keep going. I work a full time job in sales, I'm a University student, I get my butt to the gym whenever I've got the time or the motivation to leave my house (as stiff as I am because of arthritis - yoga is quite a sight!!). I don't know how to stop going full speed all of the time because that's my mentality. Some people say that my body will stop me eventually, but it won't/it hasn't/it doesn't. Even when I can't walk, I still manage. The problem is that I can be as productive as I want, but socially I'm a mess. It makes me nervous to let people in and let them know what I'm actually feeling because most people don't actually care. It's pretty sad when people slowly fade from your life because they don't want to know that you are in pain. But, we've all got problems right?

Lol enough of my ranting..... Hi! Nice to meet you all, I look forward to reading the forums!

magistramarla
06-12-2012, 08:53 PM
Hi Samantha,
Welcome to WHL. You will find lots of people here who understand and are very supportive.
Read through threads that interest you and the stickys for lots of information. Feel free to ask questions or make comments.

It is very, very important to take your meds as instructed. Plaquenil can take 5 or 6 months to work, but it does help. It's called a disease-modifying drug, and it does make a difference for many of us. You need to be taking those meds even when you feel good, because they build up in your body and protect you from having the Lupus attack your organs.

I'm glad that you are continuing to work and go to school - hang in there. You will find that we have quite a few members here who are near your age and are in college. You've come to the right place.
Hugs,
Marla

Mica
06-13-2012, 12:54 PM
Welcome, I used to be like that until I my lupus put me in the hospital for a month. For those meds to work you have to consistent, if you don't you will get sick and won't be able to do the things you do now. Look i'm about to turn 21 Sunday so were really close to age but I was diagnosed 7 years. I was a really bad patient by forgetting meds and staying out in the sun with no protection, that rebellion just ended up with me being sick during most my sophomore year of high school and an $16,000 hospital bill that I still have not paid. I know i'm being tough here but I worry that your going to get yourself sick and it's hard to get back into school and work after you have to stop. It's hard I know and it's going to be a while before you can accept that this is your life now and you limitations and thats okay. I still get upset about my lupus but have become okay unlike the first couple of years of my diagnoses. This site is awesome and has become a great help for me and hope it will be the same for you. If you ever just get frustrated and need to talk to someone who understands you can message me anytime. Really hope things get easier for you soon, rant on the forum anytime! :)

theLword
06-13-2012, 01:04 PM
Welcome Samantha,

And Mica, thank you for the reality check. I tend to be like you as well Samantha. I'm recently diagnosed and when I first found out that I have Lupus I felt very sick for a couple months, but recently I've started to feel a lot better and I find myself making excuses for poor behavior (like being in the sun a little too long). I am really good about taking my meds, but I guess similarly to how we all discuss how no one else understands the pain we feel since they can't see it.. I think I sometimes forget too. I needed to hear what Mica has been through though. Although I may not be very sick right now, I need to continue making good decisions so that I stay healthy!

I hope you find lots of support through this site Samantha!

Mica
06-14-2012, 11:47 AM
Welcome Samantha,

And Mica, thank you for the reality check. I tend to be like you as well Samantha. I'm recently diagnosed and when I first found out that I have Lupus I felt very sick for a couple months, but recently I've started to feel a lot better and I find myself making excuses for poor behavior (like being in the sun a little too long). I am really good about taking my meds, but I guess similarly to how we all discuss how no one else understands the pain we feel since they can't see it.. I think I sometimes forget too. I needed to hear what Mica has been through though. Although I may not be very sick right now, I need to continue making good decisions so that I stay healthy!

I hope you find lots of support through this site Samantha!

Well good, I was worried that it might have sounded rude. I know if I had someone say that who was my own age I would have been less rebellious.