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View Full Version : New, frustrated,sick needing answers



Angieallen
02-08-2013, 09:56 PM
I'm 32 and have had numerous problems over the years.a little over a month ago mu body begin to hurt all over.now I can't hardly Stand or walk.my appt with the rheumatologist is on the 19th. About a year ago my hair begin to come out and I started getting psoriasis on my scalp.i also have bladder issues. Anyone got any advice?

ButterflyRN
02-09-2013, 06:36 AM
Hi AngieAllen,
first welcome! advice ....well that's an open ended question :)
living with lupus is a constant daily battle for pretty much all of us. At 11 when diagnosed my symptoms were of less joint or muscle pain but more issues with fatigue, low grade fevers, swelling of my eyes and eventually fluid accumulation in my lungs, abdomen and then around my heart. I also had severe weight loss. I was lucky and fairly quickly diagnosed after leukemia was ruled out. A year later I developed lupus nephritis. Lots of chemo as a pre-teen and teenager but eventually had remission for 9 years. The. I got married, moved away, started working as a nurse on might shift and had multiple other stressors. 2 years later I flared and I flare almost every 2 years...very frustrating. Had to start chemo again and anti rejection drugs. I finally started to develop more joint, muscle and tendon pain and now 34 and its a real battle. The lupus is also a fan of my kidneys with every flare. The Lord has blessed me as my kidneys function is excellent but I have a lot of scaring and always on new drugs. I am currently on prednisone (always have been since diagnosed dosage fluctuates ), cellcept, plaquinel, Altace for proteinuria, acthar gel injections every other day (ACTH which is more of a natural steroid made by the body but this is a synthetic form). I am currently flaring. I find that cold weather is hard on me. Today it is very cold and windy and I woke up in pain :(. I had to go part time and can no longer do floor nursing but work in a desk job as a case manager that interacts with insurance companies.
i wanted to share some if my story with you because I am now 34 and have had to come to the realization over the last few years of what my limitations are. So not easy to do as a young adult! But don't be hard on yourself. Once you get on meds that keep you steady you will have good days and bad. The bad may feel like all the time. Pace yourself with activities. Housework is hard for me. I can do about one room thoroughly and then I'm done. And I am accepting of that and so is my husband. The hardest thing for me is I have no children yet and I do not think I have enough energy to ever have one of my own or adopt. Very heartbreaking but an unfortunate reality I am trying to accept.
Stay strong, ask us questions and we will be here for you! Support is so important!
ButterflyRN

Angieallen
02-09-2013, 10:07 AM
Thank you so much for the kind words. I am actually in school to become a nurse.This past month has been trying though. I gets getting so hard to just get up and stand let alone carrying the heavy book bag to class. I'm so glad I found people to relate.i will keep you in my prayers also!