I’ve been eternally grateful up til now to not have had the ‘pleasure’ of increasing medical issues.  I have 4 kids (which all of you probably know by now).  2 of them have medical issues that are starting to need increased maintenance.  Recently the inept nurse practitioner my oldest daughter was seeing set us up with a pediatric gastroenterologist, because they thought she may have Crohn’s.  There was about a 4-5 month hullabaloo before we finally ended up getting an appointment. The specialist said – she’s without a doubt certain my daughter does NOT have Crohn’s.  YAY!  Not a completely wasted day. BTW, this specialist was 3.. THREE hours away from where I live.  I hear some of y’all sayin’ “So what? it’s only 3 hrs .. yes, it’s 3 hours one way. You need to be there 30 mins early for paper work, you’re there for an hour+ then get to drive the 3 hours back. That’s an 8 hour day. My husband in this case was “thankfully” seasonably unemployed.  Thus allowing me to travel with just my oldest daughter and myself into Portland (instead of a car full of kids). Which I HATED btw. It just felt dirty and crowded.  Anyway, Doc says i’d like to do a panel for Celiac. OK  I said, but she’s been tested repeatedly in various forms over the last 7 years and it’s always come up negative.  She asked if there were recent in the last year or so, i said no. SO, she was ordered blood work.  Checked out, made an appointment to go back in 3 months.

My gripe is this. The pediatric office I *was* with didn’t try to help me fulfill my needs as a parent and family manager initially with trying to find a closer specialist. I had to fight with them for 4-5 months, then they’d forgotten about my referral, after they told me the closest specialist is in Portland, 3 hours away.  I had to push and practically yell at them. I’ve spoken with the  office manager a couple times, about their lack of bedside manner and care about their patients. Just recently I was told, (while being notified about medication updates) there’s too many patients to keep track of who needs a PA (Physicians Authorization) for their prescriptions. I was also told a few days after that, that my daughter’s usual physician was “Out sick until May”. Yep. “Out Sick” . I Demanded to speak once again with the office manager.  Told them off. (then found out that her doc, who apparently it doesn’t seem to matter about letting patients know she’s ON LEAVE for 6 weeks) I FIRMLY Believe that because my kids are on medicaid they’re treated like 2nd class citizens in the medical world, UNLESS you’re being seen by a specialist. You can’t tell me i’m wrong when I’ve seen proof of this.  For a long time, when my husband was employed with benefits, we had medical insurance. Not One Issue. Kids on medicaid? yep..especially at this practice.  I went on a hunt to see if we could even afford our own insurance. I wanted to cry. $800+ to ‘base insure’ a family of 6. premiums & oop expenses before insurance would pay? it’s freakin’ ridiculous.

In the last week alone, I’ve spent over $150 in gas just traveling to and from specialist appointments, and transfer of care to what already seems like a much nicer, more caring pediatricians office. I’ve also put my daughter’s Hashimoto’s disease back into the primary care of an endocrine specialist. Where we’ve had the best care and luck since she’s been diagnosed. I’m sorry, but Pediatricians just don’t understand the nuances of an auto-immune disease and all it’s fluxes. I’ve gotta say, i love the new endocrine doc. She’s a hoot.

I understand I live in an area heavily dependent on tourism, thus making it seasonal..and a lot of things shut down in winter. That doesn’t mean care of patients should go down hill either.

The biggest plus to living in this tiny little town? There’s a hospital .3 miles down the road. The ER visits I’ve made? In and out in LESS than 2 hours. Yep. When getting the follow up call a day or 2 later? I’m always grateful and tell them it’s so awesome to have such a quick turn around.

The healthcare system is broken. It really does need to be fixed. Both my girls need braces.  Medicare does cover it, but you pretty much have to be maimed and disfigured to qualify for it to be covered.  I drove 2 hours to find this out. Because there’s not a local orthodontist that takes Mainecare. (Maine medicaid)

No one who’s on assistance that I know of truly wants to be on it. It’s a hit to the pride and ego. I have to ‘rely on someone else to provide for my family because i can not do it myself’. I also know people who let their kids/families starve or do heavily without because they don’t want their friends/neighbors to know they can’t afford food or gas in their cars to get to work, or go to the doctors etc. There’s NEVER anything wrong with getting help. It’s the people who belittle and kick you when your down, make you feel that you’re worthless and not good enough and not trying hard enough.  Take a look around – the vision of poverty isn’t what you’d think.  We’re not all homeless bums who’ve not showered in a week, wearing 3 jackets and 4 pairs of tattered socks, and mismatched clothes, just trying to keep warm.

We desperately need change. We need caring, true caring in areas where it matters most. We need affordability of care & healthy foods. (don’t get me started on foods)

There needs to be more pro-active work done in this area to help bring about change. I’m willing to help, to be honest i can’t be the one starting it, I’ve got too many things on my plate right now. I don’t think writing endless letters to reps is gonna solve much either. we need a HUGE following and presence to be heard. It’s still young, and needs A LOT of help, the Affordable Care act is going in the right direction. People need to keep waking up, need to keep taking notice, need to keep getting involved – an hour a week is better than none. Starting locally where the biggest changes can be felt.

I know i am not the only one who’s fed up with the way things are today. Too many of “US” have to choose between medicines and food, rent or utilities  heating our home, or getting shoes for our kids.

Want to share? Keep it civil please. I know i’m not the only one who’s fed up.