Ptosis Prevents Me from Living My Life

I have ocular, double zero negative myasthenia gravis. I was still competing in swimming until I was diagnosed. I had been struggling due to the fact that I couldn't see. Sometimes I saw two, three, or four walls where to make a flip turn. I went to one place and they told me put a patch over it and live with it. Didn't even diagnose it.

Finally receiving a diagnosis

I was fortunate to get in to see Dr. Gail Wolf at UB neuro and he immediately put me on a regiment of mestinon, azathioprine, and prednisone. Within weeks there was a significant difference to the point my neuro ophthalmologist was able to put me in glasses with prisms blackout contact lenses. I actually felt like there was hope.

My ptosis began to worsen

That was 2017. Right before I retired from teaching and administration. I could no longer work. It wasn't my choice to retire. I could not complete a full day. I could not work for hours on end at the computer or on paperwork. The ptosis got worse. The eye patch seemed to help but now not only was my athletic career done, my professional career was done. An 8-hour day for a 6-hour day was undoable. I was exhausted. I was dizzy. The vertigo was unreal. I wanted to die. My whole life had changed right between work and retirement. The years I had looked forward to traveling, enjoying time with my husband and family. Now is gone. I can't make plans with friends or family still cuz I never know how I will feel. I have a part-time seasonal job as a lifeguard which I can pass the tests and everything but again there are days I can't function. I can't stand up.

Facing barriers to surgery

The ptosis has gotten so bad that I can't hardly see out of the eye. My neuro-ophthalmologist is saying that I don't meet the criteria for it not to be a cosmetic surgery. I don't know how that can be. I can't see or when I can see it's two and three of everything. For not a lack of trying on his part or mine. I'm very disgusted with the medical system as is approval for the surgery to improve my eyelid. Droop would make 100% difference in my life. I'd actually have some life back. I could actually work at the computer part-time, I could actually read a newspaper. I can't read a magazine. Everything gives me a headache because of my eye.

Looking for guidance

If anyone has any suggestions please let me know. I am a 64-year-old extremely active lady who scared to death to ride or bike because of my eye. I can no longer can ride motorcycle, substitute, teach or work full-time. I'm going broke. I have no way to stop increasing my credit card bills and no way to pay them. This disease is not only life altering. It's life killing. For those of you with generalized myasthenia I can only say I'm sorry. I don't know how you do it. I don't know where you find your strength. My faith is no longer strong enough to get me through. I have even thought of just wanting to not be on this Earth anymore. I fall easily. I have dashes all over my legs. There are many things I'm afraid to do but I did not let it stop me from going to Africa on Safari for 17 days nor to Egypt.

Unfortunately, during the war for 16 days and God willing, I'm planning a Mediterranean Cruise with my oldest friend. We met when we were two. We are celebrating our 65th birthdays in Italy, Greece, Malta. We are going into Rome 3 days early in case I have an exacerbation. Hopefully, I'll be able to enjoy Rome. I can only do so much to keep my life as normal as possible. My husband died 3 years ago and he was my biggest supporter, advocate and fan. Now that I've lost that, I've lost the drive to be on this Earth. I feel I cannot contribute anything anymore.

Please share your stories of how you cope, how you go on day after day. Never knowing whether it will be good, the bad or the ugly as Clinton Eastwood movie said. That's the other thing. Watching TV is extremely hard because of the moving parts. Let me know you're good and bad.