Hey Lauri, I noticed you live in Boston. My daughter lives there. She loves it. Very different from Texas. She loves taking the T to work each day. I have a question. You mentioned social security. I am going through the process now and I have a friend also with lupus who is going through the process. She has been turned down twice now and has to go before a judge. She has had a heart attack and many other things happen over the years and still cannot get SSD. I am having heart issues (vasculitis) and other issues and I am about to get an answer (my first) in about two weeks. Was it difficult for you to get approved? Hope you don't mind me asking. It just seems like people can get it sometimes that don't really seem to deserve it and then others like us have a hard time. God Bless Thanks
thanks for writing back , looking forward to hearing from you!!`carla
Just a quick note to say hi! wow 10 years, thats along time. I've been sick for 10 months. had a postive ana and anti sm. waiting to get into a rheumie here and it takes for ever. I can't get in until Dec. (upstate NY). My gut is telling me i have lupus. I have so many systems. Fatigue, hair loss, joint and muscle pain, rashes (not on face), swollen glands in neck and underarms, i can't get over pneumona (2 months), in the last few weeks i have blood in my urine., lower back pain. I just don't know how you went 10 years it truely feels that long for me(lol). i read they think you have MS now too? i have a friend who was dx with lupus two years ago, but just found out it was MS all along. How weird are all these autoimmune disease!! Anyway i'm new on here wish you all the best and good luck
Lauri! Now that was the sweetest thing to say! Yea, MS is quite invisible huh? I was feeling quite good the night those were taken, and what would we do w/out make up and blowdryers! Keeping up w/the bleach is getting quite expensive...lol You have a great day lady! (((hugs))) Shell
Just a note to say HI. I noticed you live in Boston. My daughter moved there two years ago. She lives in Somerville and loves it. I'm still here in Texas which I love but geeeez she's so far from me. Is your daughter going off to school? I read you post and it took you 10 years for a lupus dx? That's so long. I have been told I have fibro anf then told I have lupus and then a connective tissue disease that is probably lupus. Doesn't it get tiring?
Thanks for the reply. I am not on any meds. Waiting for my LP on Thursday then maybe we might have a better handle on what is wrong with me. The nausea started last week but I am a whimp so don't deal well with "stuff." I am thankful that I do not have a fever or extra pain with it (just the normal stuff I have had for awhile.) I wanted to get it under control before the LP so I am not extra sensitive after that (I know when I get a really bad headache it can lead to throwing up). Thanks for the advice. I think I will try the Benedryl - can't hurt at this point. :)
Hi... I hope that you're appt. goes well for the disability claims thing, and that your dr.'s appt. Wed. also goes ok and they figure out what's going on! Have a really good Monday evening,
Just a quick note to say hi! Thank you so much! That is really sweet ...I haven't gotten any information yet, but waiting and hoping (:
Thank you for your reply. The sticky part is that I have no diagnosis. I got the pred. Rx after MONTHS of going back to my doc. and complaining of symptoms. Both my neuro and physician tell me this could all stop and go away forever, so I get really upset when it comes back. I've been through a bunch of tests (I assume you have too!) and all they see is an abnormal brain MRI, but it stayed the same btw. Jan and July '08 so no diagnosis, just weird neuro symtoms and lots of confusion. So, I don't think they'd give me a longer steroid treatment, I'm probably lucky I got anything in my situation! Thanks for sharing your experience and for the ideas!
OK pretty bad type-o in my last. For clarity, my dose was 5 days x 60 mg, 5 days x 40 mg, and 5 days x 20 mg.
Thanks for commenting on my journal. In response to your Q, I was on only 15 days of prednisone: 5 x 60 mg, 50 x 40 mg, and 5 x 20 mg. The 60 mg/day was crazy, I didn't sleep at all for 2 nights in a row and barely a couple hours at a time after that. I finished almost 1.5 weeks ago, and still have the zits. While I was on it, I was able to control my eating. This weekend my eating was probably more so the fault of me being at home for so long! Good luck with things.
Just a quick note to say hi! Hi Lauri! I bumped up the other post, before I saw the one w/all the responses! You can disregard that one - k? I'm losing it...lol...but so glad you got such awesome info! ttys, Shelly
Thanks for the post! It feels good to know that I'm not crazy or alone with this. I will get all my blood work copied and start a file. I already have a Neurologist, I just want the pieces to fall into place with this medical puzzle! Thanks again.