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    • #19015
      Michelle Gonzaba
      Moderator

      What type of career do you have? Did you have to change careers, or even retire, after being diagnosed with MG?

    • #19035
      Jessica
      Participant

      I was emergency unit registered nurse for 47 years and I had to retire. I could not do CPR on anyone, go at the same pace without lots of rests, start IV’s due to lack of manual dexterity, I could not fit all my doctors appts, treatments and therapies in with my schedule ( 12 hour shifts), my husband had to drive me to work because I have a severely droopy right eye and blurred vision,because of insomnia,I could not stay alert enough the entire 12 hours… The staff was wonderful in helping out, even my nurse manager was wonderful in letting me try to organize my schedule, but I felt like a chain around everyone’s necks and I started to get anxious that I was going to make a mistake and hurt someone. So I took my pension and ran. It was hard to do but it truly was for the best. I still kept my license just in case I miraculously get better but it is currently inactive.

      • #19074
        ChrisM
        Participant

        47 years!  Well done!  You deserve a break.

    • #19045
      Robert Powers
      Participant

      I had retired once…and was ready to begin my second ideal but lower paying career as a fishing, boating and hunting guide.  Canoeing, Kayaking, etc…are more difficult now!

      MG put a damper on that due to loss of major muscle strength, medical infusion schedule…etc.  I was going to split my seasons between Maine and Florida and had completed most of the inshore boat “captain” requirements in Florida.

      Oh well, maybe in my next life! (;-)

    • #19067
      Robert Richardson
      Participant

      Aircraft manufacturing manager, 58 yrs old when diagnosed. It became unsafe for me to operate on or around high value equipment due to doublevision, or endure a 10+ hour shift schedule due to weakness, and even communicare effectively while leading others due to speech issues. I’m medically retiring…

       

    • #19072
      Elaine Roble
      Participant

      I’m also looking to go into another job. What’s most important to me is going into a job that won’t discriminate me for having MG. I’ve been working for the State of California for 15 years.

    • #19076
      Kent Estes
      Participant

      I am retired after 25 years in the US Army.  My second career was a junior high science/math teacher.  After I developed myasthenia I could not keep up anymore … just not enough energy.    Nice to be fully retired.  I told my friends I was tired of being tired.   BTW, the eye patch due to double vision was a hit with the junior high kids.  They thought is was part of a costume.

    • #19077
      Barbara E.
      Participant

      I was an IT Specialist with over 20 years in PC/network/web areas of build/upgrade/troubleshoot, taught dozens of applications, created customized applications, webmaster and eGov oversight. Most of my career was with several U.S. Federal government agencies and often included traveling all over the U.S. and its territories.

      After my MG diagnosis, ptosis often kept me from seeing well. The agency helped me adapt by providing me with screen readers (PC and portable) with in-office 1-on-1 instruction. They complied with my doctor’s letter stating my need to rest/nap during afternoons. After my doctor recommended that I retire and a myasthenic crisis, fellow employees donated sick leave to cover me until my disability retirement became official in 2008.

      I was lucky to work with so many good folks for years and these managers and coworkers were supportive of me. But, some managers were definitely NOT supportive of employees with health issues – even if their work was consistently tremendous. So, it was not surprising when they were successfully sued for discrimination by a colleague, who had a different medical condition! I don’t miss those malevolent egomaniacs, but still miss the many good, kind and funny people!!

    • #19103
      Julie
      Participant

      I worked as a nurse practitioner and the emergency room but couldn’t keep up anymore and took a clinic job. I have now had to pick up remote work as a nurse practitioner. The erratic double vision and periodic blurry vision has made it very hard to drive. Plus the arm and shoulder weakness has made it hard to drive for any length of time. I’m thankful I can continue to work as a nurse practitioner but I do miss running around the ER.

      Julie

    • #19109
      Michael
      Participant

      Director of operations/business systems integrations/data management, health insurance industry.  I had 12o employees, 7 direct reports.  I climbed the ladder in management after my MG diagnosis.  The MG didn’t stop me, but the side effects from the medications put a damper on things.

      One of my rubs with the corporate world is all will say they will accommodate my situation, in reality only about 20% will.   The higher I got up the ladder, the more difficult things got.  The travel was hard for me because I always had issues sleeping from all the Prednisone I was taking.  I was pretty much useless with no sleep….and it became more difficult the older I got.

      I’m retired now, but would have loved the work from home situation COVID created.  Now everyone works from home…no questions asked.   After being diagnosed, I lasted 18 years in high stress environments.  Honestly, I’m happy to be out of it.

      I wound up bowing out early due to the side effects from long term prednisone use.  Seems like it wreaked havoc on all my muscles and connective tissue.  Steroid myopathy and chronic tendon pain.  If it wasn’t for that, I’d still be in it.

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