[MG Community Member]

I work full time as a Medical Records Clerk as it has it moments where it is tough and I really need a break

[MG Community Member]

I hear you. Those moments where you really need a break can be so tough. Appreciate you sharing💗.

[MG Community Member]

I also work remotely full time. I definitely don’t think I could work full time at the office. A few weeks ago my eyes were so light sensitive I had the blinds closed, lights out, computer screen as dim as it would go and wore sunglasses just to get through the day! I have also had my speech go out while on a call. You never know what is going to happen from day to day. Never a dull moment!

[MG Community Member]

I felt this so much! MG really keeps you on your toes. Being able to customize your environment to make it as comfy as possible makes a huge difference. I’m glad you shared 💞.

[MG Community Member]

I can not work. I am on SSDI. My last full time job was with Safeway as a baker, I was put on medical leave but, was never able to go back. Recently, I was working part-time, only 12 hours a week and even that because too much.

[MG Community Member]

Jolyn, sounds like you’ve had to make some really big adjustments because of MG. I know a lot of people can relate to your experience. Thank you for sharing

[MG Community Member]

I used to work as a computer consultant, visiting clients in their work or home.

After my Myesthenia diagnosis and rehab, most of my clients had moved to someone else.

I stayed working remotely, but was basically semi retired. I had to move to an assisted living facility, and still do part time remote work, but nothing substantial. I am working on building stamina, but MG can just sneak up on you. My Neuro told me some greta advice. When you awaken, you have ¾ of a gas tank. You should never get lover than ¼ of a tank or you risk going into crisis. Spend your energy wisely. Teaching this to therapists is maddening. I try to stay patient and stay curious. That helps me get thru the day.

[MG Community Member]

Hi Barry, That’s some pretty sound advice from your neuro. I’ll have to borrow that when I explain energy levels to someone next time 😄

[MG Community Member]

I was very fortunately able to retire early before I was diagnosed. I was an Information Technology Director for a County Government and what I do know is there is no way I could have maintained that position to the standards that I set with this disease. The stress alone would have been overwhelming.

[MG Community Member]

I hear you. I talk to so many people who work while living with MG, and the common trigger is stress on the job 😩. Glad to hear you were able to retire 💗. Appreciate you sharing.

[MG Community Member]

Hello,

I’m 5 years diagnosed with GMG. The first year I continued to work as an intensive care unit nurse, doing travel assignments from MI to TX. In April of 22, my legs gave out leaving after a 12 hour shift. It was time to care for me.

Fast forward to now, I’ve been on disability/ retirement for almost 3 years. My license was set to expire last October. Where I know I’ll never work at the bedside again, I may find another area in nursing to utilize my knowledge or skills. Others finding opportunities with needed accommodations, gives me a little hope.

[MG Community Member]

Nora, thank you for your nursing service! Yes, you must take care of you and yes you’ll eventually find a new way to give!

[MG Community Member]

@Nora Thank you for sharing! I resonate with your reply as a former PICU Respiratory Therapist. Never let the license expire 😆 So glad you see that there are options outside of bedside to use your skills 💗.