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Posted 10/16/2010 12:16 AM (GMT 0)
I wouldn't know what to say. My life is completely turned around. I had to quit my job. I'm doing horrible in school. At first my family was sad n upset at the initial shock... Now they act as If I'm a huge problem to them. It's been 4 months. I'm too exhausted to do anything. Sometimes, most times I'm just I'm too much pain and I don't even think the doctors could do anything. I've dealt with autoimmune hemolytic anemia since I was 16... I know what it means to lose a part of your life. I've worked hard for mine. And now I feel absolutely lost. No one to go to.nothing to do. I lie in bed all day in pain mainly.. I think I even look forward to dreams. I don't know... I guess I just really don't care about life anymore. Doesn't really seem like life at all... I'm 21.. Having the time of my life
Posted 10/16/2010 3:25 AM (GMT 0)
Hang in there Justjess. I know it's not easy. Maybe you should talk with your doctor about possibly talking to your family for you and letting them know how badly you need support right now. Maybe he can get through to them what a toll it takes on your life. Don't give up. I know that's difficult especially at 21 knowing how much different your life could be. Sometimes we deal with things and it seems at times that our only success is actually surviving everyday. There's always a reason the keep fighting. what have you been diagnosed with and what meds are you on if you don't mind my asking. I will pray for you and your family, that God will bless you with some relief soon. Keep me informed on how you are. If you just would like some feedback. Keep posting, one thing you'll find is there are alot of people here that struggle with you. It has really helped me. Sometimes just knowing that your not alone. God Bless You and keep your head up!
Posted 10/16/2010 3:30 AM (GMT 0)
Please stay positive and keep strong... we all have had hurdles that we all felt the same way... think about yourself and what makes you happy, i know it sounds cliche but its very true. I myself had very hard times that just created more stress that contributed to pain but i had to think deep and know that if i've been given the shoes to wear it must be for a reason... what helped me most through the hard times, will sound odd but it really is my outlet and brings me happiness; I LOVE watching tv. I really feel at ease when i am home relaxed watching television, so maybe if you find something you love these times could make things lighter on you. I really hope you jump high above and beyond this hurdle because i'm sure that feeling that way would just effect you even more. Vent as much as you need here we all understand.... hope you feel better soon
Posted 10/16/2010 11:29 PM (GMT 0)
Hey Jess! This really hits home for me. about a year ago (when i was 22) I got horrible joint pain. I couldnt even get out of the bath tub without help or had to get help when I was sitting down and standing up, washing my hair, etc... PLEASE and I mean PLEASE don't give up. Better days will come around. What medicines are you on to help with the pain/lupus? I have been on every medicine known to treat lupus besides methotrexate and none of them worked until we tried Cyclosporine, which is very seldom used. This has been my miracle drug. Maybe you could talk to your rhuemy about it. It has taken away about 70% of my pain and made life a bit easier than it was.

You have done the right thing by reaching out and finding support in places away from home! Have you thought about going to a Lupus meeting by your local chapter? I have been to a few and they have been a great resource for me. Also, if you haven't lookin up the spoon theory and let your family read it. This is one story that helped my family understand a little of what I feel on a day to day basis. If you ever want anyone to talk to, please email me or post here! There are a lot of caring and compassionate people on this site and they can relate to some of your struggles!!!

(((((HUGS)))))
Posted 10/18/2010 4:40 AM (GMT 0)
Hey Jess - You know what works wonders for me for joint pain is Lyrica or Neurontin. I started getting joint pain too at your age. I've been building up to lupus since I was your age but didn't get a firm diagnosis until 2005 when I got lupus of the brain and had to have chemo. I know things seem grim right now but remember, this is a temporary situation and things will improve. I had a young girl on my team when I supervised at T-Mobile and she also struggled with some of the same challenges you face. Take one day at a time and try to reach out to your family or some sort of help as it's hard to face this disease alone. Hang in there!
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