Disability Questions & Information

When I was diagnosed and went on extended medical leave it was devastating for me.. On the way home from work after telling my supervisor about my need for the leave, I cried as I told myself that was my last day in my nursing career.

What I realized was that my work as an RN was not helping fight this disease.  As well as my work was not helping me in the fight.

My body needed rest and that is what I had to start doing, Rest and avoid stressful events.

Someone advised me to file for Social Security Disability even though I was getting benefits from a Long Term Disability Plan that I took out at my employment.  The process for filing for disability is not as hard as some will tell you.  Social Security recognizes that Lupus and RA are debillating and received my benefits within 2 mos after filing.  

You can apply for SS and if you are approved and later feel that you no longer need the assistance.  You can let them know that you are not ready to start getting the benefit check.  Most important is that is was file and you are approved for when you need the benefits

Changing my attitude about the disease I feel has helped me to stay strong and deal with this.  My motto is "Take control of the disease, do not let the disease control you".  You are taking control by staying at home, resting when your body says rest. changing to a healthier diet, and avoid stressful situations.  It takes awhile to adjust.  You can get pissed,angry, and depressed if you let the disease control you.  But everyday that I wake up and my feet hit the floor is a blessing.

It has been almost 20 months from the day I went on medical leave.  The road was tough and painful.  Patience was key in giving the meds time to work. I was taking methotrexate and Enbrel.  So many days I just laid around my home and frequent naps, nausea and extreme fatigue.  Some days were more painful in the joints and muscles, but I was able to walk even though it was painful.  

 In 3 months I will be eligible for Medicare.  My current insurance (Cobra) will expire the end of next month.  No insurance company will allow you to purchase their insurance plan if you are diagnosed with RA and/or Lupus.  My medications out of pocket costs are $3000.00 a month.  Medicare does not cover the expensive DMARD med Enbrel that is a life saver.  Enbrel has helped me to have almost no pain, and more activity stamina during the day.  Calling the pharmaceutical company who makes Enbrel is my next step to help me find insurance coverage for the high cost of this med.