Skip to main content

shotgun

For the interested - My shotgun commented thoughts regarding the cyber roundtable topic of National Health-Care at Marissa's Bunny...


"This topic comes up often in our home. We live in a fairly "liberal" state...and already take advantage of a demi-nationalized health insurance. State Medicaid. Honestly...after our battle with private (AIG) insurance to cover Trevy's ACTH...it was with a huge sense of relief that we entered the world of State subsidized health care. We felt safer. More protected.


I agree Mike...every decision we make is now filtered through what Trevor's future needs may be. For example we opted to buy a house with a basement that could be converted into an apartment...in case Trevor is functional enough to live on his own. Almost. It's the same filter that drives me to push for more therapy. Therapy...that thank God is federally funded...because we don't have the means to provide that for
Trevor.


Speaking of means...or lack thereof. Trevor's diagnosis radically changed our lives. We chose to resign our post with a non-profit faith-based ministry because the medical climate in Africa is not suitable for IS babies. Resigning also meant...in our case...a dramatic cut in living expenses. I have chosen to stay at home to care for Trevy. Jonathan found a decent job. But the pay isn't much and keeps us under the poverty level. It would be nice to not have to constantly worry that his next raise will push us over the income cap for receiving State Medicaid. The worst place to be is in that middle ground. Making too much to qualify for financial assistance. But not enough to pay all those co-pays that are tied at the hip to seeing all those various specialists. We fear the middle ground. Because even though parents will do everything they can for their children. Sometimes...everything comes up short changed.


I think our kids are already getting hosed. Just from a different angle. Like pharmacuetical companies that target small market drugs. And hike the price 1300% or so. I suppose it's pick your poison. Although...I'm slightly less cynical than you...and think there are some neuros that are in it for more than the money. The really great neuros. Because even though families have more ready access to pedi neuros right now...I've heard SO many horror stories of VERY well-paid doctors not providing services to match.


But at the end of the day...I just don't know. I don't know. I wish we could treat the health care system like an etch-a-sketch...and just shake it up & start from scratch. Which is the pull I feel in my gut to do with this comment! My mind is not scientific. Not a smidge. And coming up on a problem like this...makes me go numb. Much like when I walk into the market to pick up something for dinner. Too many options shut me down. I overwhelm easy. *smile*"


Comments

Shanna Grimes said…
Have a local IS family having these same troubles. Sickens me that we live in a country where the hard working tax payers who do not leech off of the system can't get decent medical care, but we have people that are not even US citizens that can waltz in to any hospital and get any care they need with out paying a dime, no questions asked! Hey, I'm not against them getting care, just think it's a crying shame that people that pay their taxes aren't getting the same treatment.

My sis is also in this situation. Makes too much for State Medical, but not enough for Private Insurance. She wants to move to Canada! There's a big crack in this system and it seems to be getting wider.
I could give you stories that would make you sick about the "system" & the people that get the help and abuse the heck out of it. I remember when i went to try to get medicaid for Connor, the lady literally rolled her eyes at me. i wanted to jump across the desk and slap her. (i promise i'm really not a violent person!!) we didn't qualify based on j's income but they don't take into account the loss of my income and the same level of bills that we had as when i was working and now several thousands of dollars of medical debt tacked onto it. thank god for interest free payment plans!! it's sad that before connor has any procedure done, i ask if the facility has interest free payments. that should be the last thing on my mind, but it isn't. if you really want to get angry... watch the micheal moore documentary sicko.
Anonymous said…
I could not tackle universal health care in just one post. I am sharing on my experience with Medicaid, currently, in a series on healthcare insurance. fyi. If you read just one post of several, you might not get a clear impression of where I am coming from.

I sympathize with "I just don't know. I don't know". In the end of the discussion everyone must decide for themselves how they feel about universal care. I try to give information, share my experiences, and own-up to my biases.

You are not the only one who would like to do the etch-a-sketch thing. Be sure to read the comments, if you read the posts.

Thank you for a thoughtful post on this issue. Barbara
Danielle said…
Barbara...I'm SO glad you shared on this topic. I've read some of your posts...and have enjoyed your thoughts. I look forward to visiting...and reading more!

...danielle

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...