Archives for category: seeing red

Well, 2014 and the new insurance changes have brought about the kind of changes I anticipated.  Our family was not allowed to keep our existing insurance, because due to insurance rule changes my husband’s employer decided to go the cheaper path.  Now we have insurance that will not cover my daughter’s formula even though she is g-tube fed and her life depends on it.  It is not supplemental nutrition, it is her nutrition, but that doesn’t matter to Cigna.  Our previous insurance covered all of her formula as long as it was her only form of nutrition, which it is.  Not our new insurance. Apparently, they don’t care if she gets fed.  To add insult to injury, we are paying twice as much for this insurance, which covers less and requires us to pay a percentage on everything they do cover (what that may be remains to be seen).  We do have Medicaid as a secondary, but due to my husband’s income we have to pay a premium for the upper level of that, so that’s costing us more as well.  Right now we are waiting to see if Medicaid is going to cover her formula.  I am holding my breath, because her formula is nearly half of our entire income, and there is no way we can afford it out-of-pocket.  What are we supposed to do?  As it is, like a lot of families, we barely make it week to week, and now with all these extra charges I am really afraid for the first time in my life of how my family is going to survive.  These insurance changes that were supposed to be a blessing to everyone are really screwing us over, so thanks a lot.  Affordable healthcare? I wish I had the energy to laugh out loud at that one, but it’s really not funny.

Okay.  I have had it.  I wrote yesterday about our wasted visit to the hospital to see a surgeon who did nothing but ask us to come back Friday.  I was already angry about that.  This morning they called me and said that the doctor will be going out-of-town tomorrow to have surgery of his own, and would we be able to come in next Wednesday.  I think my heart missed a beat, and steam may have shot from my ears.  I lit into his assistant.  We were just there yesterday and he did NOTHING.  We were brushed off and asked to come back on Friday.  Are you seriously telling me that he didn’t know he was going out-of-town to have surgery of his own?  I’m sorry, I have a tendency not to believe this, as we’ve been brushed off by his partner for sudden out-of-town excursions.  It is unbelievable at this point.  I was told that we could see him Wednesday.  That’s my son’s first day of school.  She said, well we can get you in early he starts at 7:30.  I repeated, that’s my son’s first day of school, and he goes from 8:30 to 9:30.  She then told me that we could see the partner (the first doctor to blow us off numerous times) on Monday instead.  I said at this point I didn’t care who we saw, as long as someone actually took care of this.  Yet, somehow I ended up with an appointment on Wednesday at 11:00.  I am livid.

I am pretty sure, that by this time next week her abscess will have dried up and there will be nothing they can do.  Then a week later it will crop up again, and the surgeon will probably be on vacation again.  I am beside myself.  This is ridiculous.  These doctors seem to spend more time out-of-town than in.  Is that anyway to run a practice that is supposed to take care of kids?  I pray to God that we never need actual surgery from these guys.  I am sure getting a follow-up appointment is a joke.

We went to see the surgeon today about the abscess by Lizzie’s feeding tube.  They called me back yesterday, and told me they had an opening at 9:00 am, and could we make it in?  Of course I jumped at the appointment, thinking we were being made a priority.  Then I was told that the doctor would be squeezing us in.  Between surgeries.  How that is an opening to see the doctor, I don’t get.

So, we went today.  We only waited about 20 minutes, which surprised me, because with our “standby-for-an-opening” status I expected to wait an eternity.  However, we got in the room, the doctor came in, looked under Lizzie’s bandage, and said, “Looks like we have a small abscess there.”  No, really?  Why did he think we were there?  We just happened to have an appointment, and oh goodness this abscess just cropped up.  I mean, really, did I need him to tell me what it was?  We made the appointment because there was an abscess.  I needed him to find out what is causing it.

So, he says, “Do you live nearby?”  I thought, Why?  Are you coming by our house later to take care of this?  Then he says his next patient was being put to sleep, and asked if we could come back Friday to have the actual digging and cauterizing done.  I mean, as if that wasn’t horrible enough the first time, now I have to anticipate it for three days?  It’s times like this that I am grateful that there are things Lizzie cannot understand.  How horrible would it be if she had to anticipate this for three days?

The assistant tells me, “We’ll just give you back your co-pay and your referral, and it’ll be like today’s visit never happened.”  Maybe for you.  But you weren’t up late last night with a sick dog, who you weren’t sure would make it, only to get up, get ready, get your kid ready, get her feeding ready, get her medication ready, load her in her wheelchair in the car, and head to the hospital (wasting gas and money), breaking your neck to be there by 9 am, only to go to an appointment that on the books never existed.  Really?  I wish we hadn’t gone.  Why couldn’t they have just scheduled us for Friday in the first place?  The last few times, when our pediatrician called to get us the appointment and the abscess was really angry-looking and draining nasty stuff, did they care about us coming in right away?  Did they break their necks to get her in?  No, they told us the doctor was on vacation, and how would it be if they fit us in a week and a half from now?  Now, when the abscess wasn’t that bad, we called to make our own appointment, and they had no time to see us, they squeeze us in only to be basically rescheduled?  Does that make sense to anyone else?  Because it sure doesn’t make sense to me.

I’m hoping we finally make some progress and get to the bottom of things on Friday.  This is getting to be a nuisance, and Lizzie and I are so ready to be done.

From the time I was little, I remember people using the term, “I saw red,” meaning they were extremely angry about something, but I’d never experienced it myself.  I saw a friend go through it once.  We worked in a doctor’s office together.  After checking in half a day’s schedule of patients, and making excuses for a very late doctor, she called the main office to find out that no one told her the doctor was still on vacation and wouldn’t be back till the next day.  I saw the look on her face.  If she were a cartoon, steam would have shot out of her ears.  I knew that day what “seeing red” meant: that black cloud that fell over her face.  But I never experienced it first hand, until after my daughter was born.

As a parent of a special needs child, you get used to comments on your parenting and unsolicited advice.  You endure the well-intentioned friends who suggest a medication or a school that would be “better” for your child.  You smile and nod your head at the people in the store who tell you what you should do about problem “a” or problem “b” with your child.  You bear with the clueless hospital staff that tells you to do what you’ve done, or try something you just explained you have tried.  And you grit your teeth and bear what the “Schmuck” says about you to others.  Maybe you don’t want to make a commotion, or be rude.  Or maybe you don’t want to upset other people who are not at fault.   Or maybe you’ll actually file away some of the meaningless gobblety-gook they serve up for a later doctor discussion.  But, there may be times when holding your tongue is not what you should do.

Today’s story is about the Schmuck and the first time I “saw red”.  Let me set the scene.  We were at a mutual friend’s party, it was a cold October day, and the party was in the garage.  My children were with me.  I don’t remember if my husband was there.  If he was, he was off with the men-folk somewhere talking about power tools and landscaping, and not getting blamed for anything.  My daughter, a few months old, wearing a heavy snow suit, a heavy blanket, and parked in her stroller by two powerful space heaters (no not close enough for danger, but close enough to be in the warmest spot in the garage), was within my sight, and being checked regularly (read every 5 minutes), to see if her hands and face were warm, but not too warm.  I had to go to the bathroom (when you gotta go, you gotta go), and I felt bad leaving her alone for even those 10 minutes (I had other Moms I was sitting with watch her while I was gone).  I was coming back down the stairs when I heard the Schmuck say to some new parents, who on arrival brought their baby in the house, something about a baby who was sickly.  I felt bad for those parents, I even thought about saying a prayer for the family.  Then I realized it was my daughter he was talking about.  He ranted for a few minutes about how I was doing all sorts of wrong things, and then concluded with, “Some people really shouldn’t be parents.”

Tears sprang to my eyes, but didn’t come out because that’s when I literally “saw red”.  Yes, it really happened.  I was stunned, insulted, and just downright outraged.  I said nothing to the Schmuck.  I don’t think he even knew I was in the house.  I walked out the door, and back to my daughter.  It was a different time.  I was just getting my footing as a special needs parent.  There is no rule book.  There are no guidelines.  No two special needs parents arrive at the same place at the same time.  Special needs parents will understand this…  there are many towns in Holland, and some are closer to the border.  I am now smack in the middle of that beloved tulip-filled country. Back when I had my run-in with the Schmuck, I was as close to the border as I could be and still trying to find my ticket to Italy.

If I were to hear a comment like this now I would have schooled the Schmuck.  First of all, my daughter was being well-cared for as evidenced by my behaviors listed above.  Second of all, my daughter was not sick.  She had a birth defect which caused developmental delays.  Read again, NOT SICK.  Or sickly, whatever that means.  Third, there were a bunch of pre-teen girls at the party who looked at my daughter like she was a doll.  Should I have left her in the house with them?  Fourth, I have another child, who was in the yard off the garage with other children.  Should I have left him outside, unattended?  Or should I have made him sit in the house, too?  Should we all have stayed in the house alone?  What’s the point in coming to the party in the first place then?  How selfish of me, I was starving for adult conversation.  I did, after all, give up my job to be a full-time caregiver to my special needs child, and so hadn’t talked to an adult other than doctors, therapists or my husband for months.  (It’s amazing how most people bale when you have a special child.)  How dare I take one day, with my kids in tow (and my special one within arms reach), for myself.

Yeah, I would give him an earful now.  Of course I speak fluent Dutch now, (still going with the Holland metaphor, people), and decided Italy wasn’t for me after all, (read, “Welcome to Holland”, by Emily Pearl Kingsley, if you don’t get these references – it’s an essay handed out to many new parents of special needs kids, and I wish I’d written it, it’s that brilliant).

Back then, I just held it in, wondered if I should feel bad about myself, and held a grudge.  Oh, yeah, to the “Schmuck”:  I’m still holding that grudge, that’s why I still remember this in as much detail as I do.  Of course, my husband doesn’t remember, and doesn’t get why I still don’t like this guy.  Hmmmmm.  I wonder.