Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 12-16-2006, 08:50 AM #1
tshadow tshadow is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 1,002
15 yr Member
tshadow tshadow is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 1,002
15 yr Member
Default Wittsea Made A Great Point / Instant Recovery

In a lower post, Wittsea made a great point.

She said that since her illness and her husband's cancer, 95% of family bailed, and 75% of friends bailed, "because they thought that after the illness we'd bounce right back immediately."

And besides the fact that I always find it unbelievable that family dumps us more than friends - and it's true according to my counselor - she's got a point that people don't accept or expect long illnesses anymore. I mean, they see t.v., and the pharmacy commercials and medical advertising magazines, women's magazines, and no one talks about having a long-term illness like ours. Even MS and rheumatoid arthritis patients are pictured out biking or goofing around at a picnic or running along the beach in the advertisements.

I think our society either expects you to get sick and die, or, maybe need a little nursing care if you're 80, (and then you die), but they just aren't educated about a long-term, totally debilitating and sometimes incureable illness as some of us have here. (I want to note some here do work, ride bikes, etc., but I'm addressing anyone like me, bedridden or seriously disabled but definitely not dying from it.)

I do get side-track illnesses such as my kidney, and now my liver is quite large and fatty and we've got to address it, but nothing that screams imminent death - just problems from lack of ambulation.

I am curious, how many others have FAMILY who bailed on them, and what did you do?

I had fiance simply take over the phone. I can't talk right now anyways - my jaw and ear hurt a lot afterwards - so I just have him tell them whatever the truth is for that day. It has taken a lot of burden off of me then to have to explain "why aren't you better when you were in bed all day yesterday? Have you taken vitamins? Maybe you should see a chiropractor." (If I am hearing that, I just stay quiet. I don't have to say anything. Just dead air.)

All of the advice, when I can't keep up with my med appts. and psych telephone appts. already...I'm work out by my med schedule!

So how did you handle it?
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