I fully understand that some people cannot stomach it. I get that others will simply see it as whining and complaining. I get that some people will run the other way to avoid contact. That's life with chronic illness. People do that, anyway. Remember Church lady? She told me that satan had a hold on me and that it was a blessing and a curse to know my family. She called and yelled at me over the phone one night was seemed to be an eternity. She wasn't even someone I spoke to about any of the boys' issues. Yet, here she was flaming mad........ people just don't want to hear it.
I blog about many things- what you don't get here are the midnight headaches and dizziness, the pumps breaking during infusion, an abscess site not healing, emergency room visits, daily pain issues, bone marrow biopsy issues, etc. I post on FB about it were a limited number of folks on my friends list can see. People that I assume I can trust are on my *close friends* list. I private message maybe 3 people about our struggles, text one friend and email one other. I try not to talk to people at Mass because I know they just don't want to hear it.
This would be an example of what not to say to someone who is really struggling with two sick kids, impending financial ruin, not being able to get her children's medications shipped directly to her house, and all that goes with chronic illness:
- "Instead of repeatedly letting Satan, his activities, and his many duped minions continually control/dominate your thoughts, feelings and time and energy, channel all that energy into something constructive instead of dwelling/living in all the drama - which gets you nowhere, burns you out, and tends to push people away from you."
You may well be correct in your assumptions, but you may miss the mark. Perhaps in a rush to judgment, you could fail to see that the current mental angst and reactions to stress only happen every few years..... and even if it occurred every single day, would the reaction to the constant pressures be wrong?
I have a challenge for all of you reading today. I realize that you can't actually do it, but you can imagine it: Rack up over $60,000 in credit card debt from medical bills in 17 years, take out several loans to pay medical bills & pay them off, take out another loan,and two other loans against your 401K adding to that 60K in credit card debt. Then rack up over 18K in the first 7 months of 2013 because #Obamacare has made everything worse.... AND then head to an appointment where you have to put another $800 on a credit card so your child can receive the dental care he needs. Would you be letting people know how much worse #Obamacare has made your life? Keep in mind that while all of this is going on, we ALSO deal with daily medical issues at home..... and I do talk about those to my *close friends* list. I don't share this crap for pity or to solicit donations. I share so that, maybe, you'll get off your ass and join me in the epic battle of taking our nation back so my children can actually LIVE and receive medical care. If I said all these things and then sat on my ass and did nothing, you'd have every right to talk smack to me, but I'm not sitting on my ass just telling people what is happening, I am WORKING my ass off to make a difference! Before you judge me, look at the whole picture. Before you judge me, realize that talking about this was my pledge at the end of last year-- the good, the bad and the ugly- all to wake people up. We live with the daily knowledge that, at some point, we will run out of credit and we won't be able to pay the $532 copay for a life-saving medication. Tell me that knowledge wouldn't make you feel an urgency to shout from the rooftops. You are free to walk away - I don't make anyone stay. I have the fortitude to withstand any trial because God is on my side- I need no human being to prop me up. God will sustain us in this battle.