How to Be a Demanding Diplomat as a Severe ME/CFS Caregiver

[@looley90]

@Bateman Horne Center, please please please please do not stop these videos. Please don’t stop your work on this issue. I am so thankful for these resources.

[@KittenCasserole]

Thanks so much to Galen and the BHC for this great presentation. Lots of hard won and helpful information

[@mandycoke5013]

Thank you, Galen!! Great information!! 💙💙💙

[@mariak5253]

Thank you - great info especially for us- caregivers

[@mnelson9057]

Thank you so much. I couldn’t read the links she gave on the last slide, can you add them to the description? They are blurry. She is doing a wonderful job for her son, as befits her name. I wish him the best and that this awful disease becomes treatable. There aren’t words enough to express my thanks to Galen and the Bateman Horne Center.

[@CalvinRyerson]

There are links in the video description.

[@CalvinRyerson]

medicare.gov/coverage/ambulance-services

[@madronasunrise]

For the Medicaid transportation part, just fyi, if you are capable of transferring yourself on and off the gurney or ambulating even a few feet they may try to refuse to pay for the ride. I was warned of this and opted for a really uncomfortable upright wheelchair ride across town, and resulting PEM. I had arranged the stretcher ride for leaving the hospital. They said if I was ambulatory at all I would be charged, so I opted out because they saw me use the bathroom. I was so sick at the time with my orthostatics really flaring up. BP 52/40 back then. I also got PEM from getting up to walk to the bathroom and the bright lights. I felt like passing out when I was on the toilet. But the paramedics don't understand ME like that and I couldn't risk getting a $3000 bill. Another time, I was denied access to a whole cardiology clinic while trying to arrange my stretcher ride to arrive there. The office manager claimed I was "rude" to staff, but the truth is they denied me medical care because the logistics were annoying to them. I was pleasant and not rude at all. I do think it would have helped if somebody was advocating on my behalf. I have a reclining wheelchair now, and my health has improved just enough to not need a stretcher but my heart goes out to anyone trying to make these arrangements. It is so difficult! I hope you have better luck. People thought I was just being a massive inconvenience, and I think having good caregivers advocate on our behalf can work wonders. Thank you Galen for everything you do.

[@galenwarden2268]

@madronasunrise I absolutely hear you regarding the challenges you describe. James was also denied care by a local neurologist when they heard he'd be coming by stretcher. The doctor refused him as a patient. Period. Too much hassle, as you say. While the podiatrist who cares for his constant ingrown toenails is always so accommodating and the staff is always kind. Like every service we need - from doctors to housing to therapists - nothing matters as much as the character of the person interacting with you. I'm so glad you're well enough to use a wheelchair. If you have a specialist who understands PEM/ ME - you *should* be able to get a note for gurney transportation if you need it in the future - even if you can walk a few steps. Preventing harm - lower baseline or big crash - is as critical for you as just getting to the appointment. NOT pushing often means the gurney/ stretcher.

[@CricketGirrl]

How do you get a case manager? Which agency has those? None of the home health aid companies in my area take Medicare. They take Medicaid, but my income is just barely too high to qualify. My poor husband is drowning, and I don't know how to help him. I am severe/very severe. No family members will help us. My PCP fired me and now I don't even have one of those. I'm in New Mexico.

[@cherien6283]

It's very dependent on which state you're in. Can you tell us where you are?

[@CricketGirrl]

@@cherien6283 New Mexico