PACE and Energy Envelope

[Seven7]

All I want to say is that I am frustrated with this BS.
Does staying in my envelope works and I avoid symptoms? YES.
Is it feasible and practical ? HELLL NOOOOOO.

I am fighting with my short term disability because they cannot pay me just because a doctor say I need to rest!!! Sooo they say is an acceptable solution to our problems but there is no way you can get financial help while trying to do it.

I want somebody to explain to my kid why I can't play outside with her (heat and POTs), or tell my Boss Why I cannot go to the meeting Up the stairs and 10min walk of hallways, or why they find me sitting on the hallways because they are so long I cannot make it on one go.

BSSSSSSSSSSSSSSSSSSSSSSSS. Sorry needed to vent, the lady from the Short term disability insurance is driving me crazy.

 

[alex3619]

If you could get decent exercise testing (like at Pacific Labs/Stevens protocol) you could wear a heart rate monitor set at your aerobic threshold and it will beep when you go over (but this testing is costly and exhausting). You would then be able to explain why you stop. I wish this were easier for you, and for all of us. Its so hard having to explain. Bye, Alex

 

[Seven7]

Alex I got the test done. My AT is 115bpm. Brushing my teeth is 112bpm. Up the stairs is 140bpm (this on bad days). Sitting up in the office doing nothing is 100bpm to 110bpm. Three Hours into it, I am with my tongue hanging out and out of breath, even when I don't exceed my AT, after hours with my HR >100, it trashes me out.

The HRM has help for people to understand better. But there is a point that they don't care, they pay you to work not to lay flat to wait for your HR to go down. I am seeing an electrophysiologyst the 21st and see what we can do.

I guess my point is, they recommend to PACE, you get the test and you can prove but insurance don't care. PACE is not accepted when it comes down from a practical point of view, is not an accepted practice by Jobs, Insurances..... So it is idiotic to say that is the solution.

 

[SOC]

You might want to look into issues related to cardiac limitations. Seems like I've heard talk of the exercise testing making it easier for people to get disability because of the abnormal results, so shouldn't similar disability issues apply in the workplace?

With your AT that low, wouldn't your ME/CFS specialist prescribe a power chair of some kind for work? That would help keep your HR down, of course, but might also make the point to your boss and coworkers. Can't your ME/CFS specialist help you get disability accommodations of some kind?

 

[*GG*]

You need to have your Dr alter his write up, is there something you forgot, that they could include, that would be more solid/convincing? I was out on short term about 3 years ago, I didn not have any issues, Colonial Life was the company. Perhaps my Dr wrote something more convincing? If the Dr is not willing, find a new Dr if you can.

Best of luck in this very difficult situation, seems like things can never be "easy"!

GG

 

[Esther12]

This thread made me think of this recent comment by Tom Kindlon on the PACE trial and practices by insurance companies:

http://www.plosone.org/annotation/listThread.action?root=52637

 

[warriorseekspeace]

The STD people are paid to find any justification they can to deny/ terminate benefits. There is no reasoning with them. They are waiting for you to say or do something (or not jump one of their impossible hurdles) that they can twist and use against you, or for a doctor to say or write something that they can twist and use against you. If they can't, they will ultimately pay an unscrupulous and unethical "doctor" to give their "opinion" simply based on medical records. This should be illegal, but it is what happenned to me. At the time, I couldn't even manage to sit up and talk on the phone, and had my caregiver was up to her ears in moving households with an elderly person she wsa the caregiver for, so of course they were easily able to taek advantage of me.