slopokahontas
Distinguished member
- Joined
- Sep 5, 2014
- Messages
- 116
- Reason
- PALS
- Diagnosis
- 08/2014
- Country
- US
- State
- Az
- City
- Tucson
I'm usually very positive, but finding it harder and harder lately! ALS has stolen so much from me already and I'm still just at the beginning! I lost one of my jobs because insurance won't cove me driving patients if I have ALS. My other job is threatening to let me go because I'm moving slower. I'm ineligible for SS because I was a stay at home mom for 6 years. Who cares about all the years I put in before! I can't pay my bills and when I've applied for help, I'm told the programs are for people gettting on their feet, ALS might make me ineligible! I need a ramp to get into my house, it's a year waiting list! I've spent my life working my ass off in the medical field, loving every minute of it! Going beyond what was expected because I loved my patients. I am now the patient and now understand their frustrations first hand!
I thought after the ice bucket challenge, people were more educated but when I explained to my boss why I'm moving slower, he said "Don't know what that is, but it must suck"....You bet your ass it sucks. It sucks to look normal but drop things, trip over your own foot, choke on my coffee, have constant pain of muscle cramps, have people think I'm mad because my jaw cramps up, can't chew my snickers, can't run with my kids, can't open a bottle and my road has just begun!
Sorry to be a Debbie downer, but you all are the only ones that might understand!
I thought after the ice bucket challenge, people were more educated but when I explained to my boss why I'm moving slower, he said "Don't know what that is, but it must suck"....You bet your ass it sucks. It sucks to look normal but drop things, trip over your own foot, choke on my coffee, have constant pain of muscle cramps, have people think I'm mad because my jaw cramps up, can't chew my snickers, can't run with my kids, can't open a bottle and my road has just begun!
Sorry to be a Debbie downer, but you all are the only ones that might understand!