Desperation II.

Hell is being stuck in the Waiting Room.

Throwing Popcorn

I joined a bunch of websites in order to learn more about my disease, and how best to treat it from people who are on a similar journey.

Many of the websites about stem cell pioneering and COPD strategies have been helpful, however, I’ve let those friendships bleed into my facebook experience and it’s bringing me down.

One of the women I originally met on one of the sites talked about the fact that she’s really had a hard time losing friends to our shared disease, COPD, and yet she was one of the first people to befriend me when I joined.

So, we now play Words with Friends, Dice with Friends and other time-killing games in addition to dealing with our own mortality as well as that of the the folks around us, all at various stages in the fight against the disease we share.

Without sharing information about who is critically ill, one of our veterans is receiving crappy support from the Veteran’s Administration (VA) hospital as he nears end of life, and he’s been struggling with multiple emergency room visits and neglect from the VA as he fights to live.

Not sure what’s going on in the real world surrounding this drama, but the amount of people that he’s connected to from our shared site can be quite burdensome on his still-young and very active wife who cares for him.

The doctors have sent him home, telling him that there’s nothing more that they can do for him, and every breath he takes is a struggle.

The leaders from the wellness site are relentless in checking in every day to see how everyone’s doing, and apparently there has been some drama behind the scenes to try and tell the wife how to care for her ailing husband from those who share the disease.  Not sure what’s going on, exactly, but the postings on facebook have been quite drama filled with the wife telling people to back off and not bother her as she’s busy caring for her husband (all reasonable).  In the latest drama, the posting was quite a diatribe about the Lord being on her side, and that everyone else needs to leave her alone.

Sad, that it has to come across in such a blunt statement, but all very reasonable as the busybodies in Hell’s Waiting Room are (in many cases) simply sitting around waiting to die, looking for a distraction involving someone else’s state of health, instead of getting on with enjoying their own life while there is still enough ability to function in themselves find joy.

I’ve had to step away from that other site, though, as it was bringing me down.

It started out as the ipad being incompatible with wordpress and with the other site, and since I spend most of my computer time accessing sites via the ipad, it was easy to stay away.

I know Hell’s Waiting Room serves a purpose for family and friends fighting the good fight, but it’s just not where I want to spend the bulk of my time.

How about you?  Did you get into a site with all the right intentions, and make some good friends, only to find out that it just wasn’t fitting your needs in the long term, or even just at this moment?

Inquiring minds would love to know…

 

 

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