Blog Comments

  1. Tonyarenee's Avatar
    Most people dont know you can have your husband mother father co workers and even your x boss write a letter telling how you are affected by your illness...believe or not you can submit it to the disabilty board! Also make a daily diary of everything going on with you....copy it and have your Dr put it in your file! Dr's only write little about whats going on with you the day he sees you so when he has to fill out forms for disabilty your notes you had him put on file can be a great help! Also the disability office has a list of lawyers that handle claims ask for one who is fimiliar with Lupus being as Lupus is soooo much different than other disabilities one who is fimilier with Lupus makes a world of difference! Good luck and hope it helps!
  2. trustme's Avatar
    Noooo don't give up. i got turned down 6 times 6 years straight. i just kept sending them the same paperwork. i didn't use a lawyer. i just kept appealing. then they cut me a $10,000 check in full and finally approved me for bells palsy. don't give up because that's what they want you to do. i have a friend who is in a wheelchair and has multiplesclerosis they turned her down 7 times and she gave up. now she lives in a nursing home. she had a job but couldn't work anymore and didn't have a caretaker. the more they turn you down the more money you get from them. if they approved you the first time you wouldn't get any backpay back.
  3. tabathabroaden's Avatar
    Thank you for responding! My lawyer has already appealed, he said he cant understand why the decision was unfavorable. I am beginning to lose hope though, and faced with the reality that in order to survive, I need to get back in the work force. My husband is against it, as he feels, no job will keep me because I am ill often. He feels my body and mind are not strong enough to handle work anymore. His advice was now that I am older, I am not as resiliant and feels I need to fight for the disability. I dont know, I fear what will happen to my family. I was the major bread winner, so we are already trying to live on much less. What happens if I am not approved for disability, what now? I just feel like I do not have a choice at this point. You are right, it is such a challenge to try and work with this disease. I do not have major problems such as with my internal organs, but I have chronic fatigue, I have to take naps during the day, chronic pain, swelling and random mobility issues. It is really hard to try and pretend like everything is ok, when I sit in the restroom at work and cry because of the pain, or I have to use confrence rooms to lay down during the day and pray I dont over sleep my break...ARRGGGGG! Frustrated!
  4. The Baum's Avatar
    You're not crazy. That doesn't even make sense. Appeal the denial and get a lawyer. There are a lot of lawyers that only get paid if you get disability. Don't give up. I am not sure what people expect of us. I have only been having symptoms for about a year and it has been so bad these last few months I don't know how anyone can even work.
  5. tabathabroaden's Avatar
    Quote Originally Posted by Cathy
    I would find another doctor. You need to see your doctor every 2 months for blood work and follow-up with meds. and care. As far as work girl suck it up for a year so you can get FMLA. Because we show no outside illness but a red rash no one will get it. If you are really in alot of pain maybe try to starte a part-time job. Dont give up. Write down a list of your concerns and dont let that doctor leave that room without getting answers. You do have the right to tell him if he dont treat up then referr you to someone who will. Get hooked up to a Lupus Center which are in some major cities. Lupus is on the raise they cant keep turning their backs on us anyone. I 100% understand all your anger towards others who are so stupid because "WILL YOU DONT LOOK SICK" and you feel like shit and they keep pushing and pushing and pushing. It's ok to break down, cry, stomp, yell and cuss. but you will get back up and fight again. Welcome to this roller coaster ride.

    Cathy,
    Thank you for your response. I did find another doctor, he walked in the room, evaluated the swelling, asked me a few questions then left. He sent the nurse back in the room with scripts and told me to rest. I asked the nurse what did the doctor say and she said said you have Lupus. I thought to myself- DUH!!!...He wants you to take these and see him in days. So hear I am again. No job, no mney, no insurance, and scared! Oh yeah, I did have FMLA, but my doctor would only approve 8 hours per month, so in a flare, I exceeded that and I was fired. I dont want to give up but I am so tired. I am sick of the snickers and like you said, Oh, you look great! People have no idea what I feel like despite what I look like. I fear this has ran its coarse and im just about done!
  6. Cathy's Avatar
    I would find another doctor. You need to see your doctor every 2 months for blood work and follow-up with meds. and care. As far as work girl suck it up for a year so you can get FMLA. Because we show no outside illness but a red rash no one will get it. If you are really in alot of pain maybe try to starte a part-time job. Dont give up. Write down a list of your concerns and dont let that doctor leave that room without getting answers. You do have the right to tell him if he dont treat up then referr you to someone who will. Get hooked up to a Lupus Center which are in some major cities. Lupus is on the raise they cant keep turning their backs on us anyone. I 100% understand all your anger towards others who are so stupid because "WILL YOU DONT LOOK SICK" and you feel like shit and they keep pushing and pushing and pushing. It's ok to break down, cry, stomp, yell and cuss. but you will get back up and fight again. Welcome to this roller coaster ride.