View Full Version : New Member in Corona, California
07-07-2012, 10:58 PM
Hello Everyone, my name is Priscilla and I was diagnosed with SLE (among other things) in 2007. I started having pain in my legs that would work into my back, joints and then all over. I chalked it up to arthritis....until I finally said something to my GP who ran blood tests and all came back leaning towards Lupus. My GP wanted to make sure so I had a bone marrow biopsy( which was worse than child birth), and then finally a lymphnode was removed from my groin area via out patient surgery. I was referred to a rheumatologist who confirmed that it was Lupus and told me my life would never be the same again. Boy was he right! Ive had numerous hospital stays, most recently in March for chest pain and difficulty breathing. They performed too many to count or remember EKGs, ultrasound, echocardiogram, stress test and then a test which name eludes me at the moment...all tests came back pointing to complications by Lupus. I have a stressful job...who doesnt...I work for a firm that assists clients with their taxes (NO not the IRS). Medications Ive been on them all. Recently started giving myself weekly injections of Methotrexate. The flare ups, and symptoms persist with little to no relief. Ive contemplated just giving up everything...medications, therapy etc and just letting my body win...and then I think of my family and somehow I get out of bed and start all over again. Ive been meaning to find a group like this for sometime now...Hoping you can help. P
07-07-2012, 11:47 PM
i understand the frustration of constant medical complaints.
i had my problems for 30 years before i was diagnosed.
since being diagnosed,i have had to give up work, and re-evaluate what was really important to me.
i went bankrupt and lost everything.
i now rent a quiet house on a farm.
life is very good to me now.
we all need to find our balance.
mine meant giving up the stress of work.
i hope you can find your balance.
please read a few of the older posts......
they are our personal experiences with lupus.
07-08-2012, 08:46 AM
Wow! Priscilla, WOW! OWWW!!! a bone marrow biopsy? They must have suspected something worse than lupus in order to do one of those. My sister had to have one for diagnosis on her Waldenstrom's. She equated it to a shattered bone, only worse. She'd know, since she shattered her leg in a fall a few years ago, which is what started the process toward them finding the cancer.
Like Steve, I do NOT recommend quitting meds, especially without medical supervision. Finding that 'balance' as Steve mentions, is key to your situation. It might take quite a while to accomplish, and may involve changing doctors and/or altering your lifestyle and/or meds/therapy. Steve decided to quit work. Me, I'm 4 years from being able to do "early" retirement (60), and that's my goal, but I might not make it there. If I do, my financial situation, both monthly income and medical insurance will be much better, but I do have alternative plans that can be implemented, though they're much less desireable. But I'll do what necessary. Planning is part of the process, but I do NOT have plans that allow for *any* of my medical stuff to "rule" me. They might limit what I do, how I do it, etc., but I'm the one that makes the choice. One foot in front of the other, one at a time. Don't just give up. Talk with your doctors about how you feel. Then tell them again. If you don't get anywhere with them, change doctors. I know each person's finances and insurance play a major part in their decisions, and you may have to find yourself an 'advocate' to help you with this all.
Welcome to the forums, and be sure and check-out all the "stickie" threads at the top of most sections of the board. btw, This is an excellent place to 'vent'. Lot's of good listeners.
There is another thread here right now about someone talking about stopping meds. I just posted my story on that. I suggest that you read it. The worst thing you can do is stop the meds. Lupus no longer has to be deadly but stopping medicines can let it kill you.
We are glad that you are here. Welcome to the WHL family
07-10-2012, 05:28 PM
welcome whl we all feel like giving up at times this disease affects us physically and emotionally i do not work but a carer to other family members and it takes its toll but i amlearning to take one day at a time we all have to change our lives with lupus we just adjust and work around it i was always a sticklier for my house being spotless making sure i got everything done never asking for help. now i work around my lupus i order my groceries online and pay bills online. and i do my best with housework and have just had to learn to let go of what i was and be who i am now and try to be happy with that i will not say that somedays i donot get angry and frustrated and depressed especially having to ask other people to help but i am learning to live with it. and you will to goodluck