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Baker1

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 #31 
Hey, I could have used some of that vodka. Now I can't drink for the next 14-16 months. Maybe I'll ask to bend that rule so I can have a couple to celebrate my 50th birthday in April.
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Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
Cakelady

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 #32 
I am not sure who snuck it into my grandmothers birthday party I do know that crazy cousin pattys family is the one who drank it.
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Debster1971

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 #33 
Thanks everyone for responding! I am just praying I get approved.  The bills are way too much for me to handle and I can't sleep at all at night with the struggling thoughts racing through my head :( I don't think people will ever fully understand how lupus truly affects us.  We look fine on the outside, but feel as if we are dying on the inside.  Mine hasn't affected my internal organs though and I am so thankful for that.  But the fatigue, headaches, horrible cognitive issues and bouts with pain is about to get me down.  I am 45, live with my parents and kind of help take care of my dad who suffers from dementia. It has become a real struggle for me.  And the chronic fatigue is probably my very worst symptom.  I tried 4 different jobs in an 8 month period and only lasted at these jobs for a day :(  I am at a loss :(
Debster1971

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 #34 
Hi Miss.takenbylupus! I have always had office jobs, sitting down. But my cognitive issues have limited me to nothing pretty much.  I simply cannot remember what I've learned and my focus/concentration is completely gone.  At my last job (office) I'm shocked they didn't fire me due to my attendance issues with this lupus stuff.  I've dropped out of college 3 times now due to not being able to learn anymore.  It's awful :( And my fatigue is just awful, so I was basically falling asleep at my desk in my last position ( thankfully no one seen me do this).  If I had the capability to learn and retain the information, and to not be so darn tired all the time, I would try for another job.  But I know this vicious cycle is not letting up and I am so overly depressed about it :(  What can I do?  Any tips, ideas on how to get over this fatigue and the cognitive issues I'm having?  Thanks so much for your reply above :)
Baker1

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 #35 
I had work a factory job until I was laid off in October 2013. I knew that I couldn't go back to that kind of work, so I started taking classes during the summer semester of 2014. This semester was supposed to be my last and then onto a new desk job. During the fall semester, lupus hit hard and after failing my midterms miserably, I withdrew from not just the classes for the semester but the whole program too.

I had never been hit this hard by lupus before. The only thing that has changed is the stress level in my family is a lot lower. I would have thought that I would have flared during the high stress period, but the stress seemed to keep it away.

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Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
Debster1971

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 #36 
Hi everyone!  Well I got denied for disability :/  I was just wondering if you all had a problem getting a definite diagnosis?  I have been to so many rheumatologists' and my ANA test comes back positive every time, but with a very low titer level. My newest primary doc said my new rheumy put in my medical record that she didn't think it was systemic? What the heck? All the nurses that call me back say it's definitely lupus.  It seems I can't get any doctor to help me:(  They said it's not fibromyalgia because I don't have the tender spots when they check ya.  So if it's not lupus or fibromyalgia, WHAT COULD IT BE?????  I am so overly frustrated right now that I could scream. I have chronic fatigue, my muscles and joints ache all the time, I have headaches and brain fog to where I cannot even recall what I've read in a book :(  What is this that I have?  It seems no doctor will take me seriously or diagnose me properly and I am just at a total loss :( Any help with this horrible situation would be wonderful!
Thanks so very much :)
Cakelady

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 #37 
First most people get denied first you need a good attorney to help with the process.

Second jumping from rhemy to rhemy is a sire way to get denied. And the nurse s only reading the lab report it's up to the doctor to interoet it. Also having a positive ANA does not mean you have lupus. My ANA goes back and forth. From positive to negative to positive. There is not one test that says you have lupus.


Your doctors have to be behind you going out on SSDI if they are not you willnot get approved. My doctors tried for years to get me to go out because I kept getting worse but I had 2 kids at home a husband and a mortgage and our heath insurance was through my work. I had to work.

Take it one day at a time and good luck

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Debster1971

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 #38 
Thanks for the reply Cakelady :) Well I did have an appointment yesterday with my nurse practitioner and asked her to read me the report my newest rheumatologist' had entered about me and it is definitely systemic lupus :/ I'm at least relieved to know for sure now what it is that I have! I was just wondering how you all cope with the cognitive issues (remembering things, not being able to concentrate/focus) This is one of the main things that has really been affecting me, aside from the chronic fatigue. Also- has anyone on here heard of a product called Thrive (by a company named Le-Vel) I have been researching this product and I'm thinking about trying it. It's wearable nutrition basically (a patch) and from the reviews I've read, the results are amazing. But I haven't been able to find any research with people using this product that have lupus. Any thoughts on this would be terrific :) Thanks much :)
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