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What I really wanted was a photo of a pokemon on top of the CT machine, but they were't cooperating.

What I really wanted was a photo of a pokemon on top of the CT machine, but they weren’t cooperating.

It seems like one week I have too much to write about and the next week not enough.  I spend one week on the phone making appointments and the next week going to them.

This last week I spent a lot of time on the phone making one appointment.  Orion was due for a check-up with the neurosurgeon.  This is a complicated appointment because it requires us first to visit radiology for a CT scan and X-rays and then to review them, and whatever ongoing care plan, with the doctor.  And –  It’s neurosurgery.

It doesn’t really matter which days the doctor is scheduled to do surgery and which days he’s scheduled to be in the office.  When something comes up, it’s probably a priority.  Of course the hospital doesn’t have an Operating Room dedicated just to head trauma so schedules jiggle all over the place.

Thankfully, I don’t have to orchestrate the whole thing.  That’s the job of the doctor’s scheduling secretary.  I made the initial appointment by calling her and suggesting which days wouldn’t work for me.  Then she called me back and gave me a time, knowing she’d have to confirm it with radiology.  She said she’d call me back if there were any changes.

Three times this week she called me back.

I know people’s appointments have moved for us plenty of times in the last 28 years.  (Orion’s first neurosurgery was in December of 1988).  It’s nice to be the ones who are NOT in a hurry to see the doctor.  It’s been years since we’ve been in and these are people we’ve had a relationship with all of Orion’s life.

Everything is hunky-dory.  Orion is stable.  His scans look almost exactly the same as they did 3 years ago.  I don’t look the same of course.  The PA didn’t recognize me coming in with Orion until she turned face to face with me to explain the scan.  The weight loss really is that dramatic, and she’s never seen me at this weight (although the doctor has).  She’s going back to school for her doctorate this year.  We’re going to try and squeeze lunch into the scheduling drama the next time we come in.

Squeezing in lunch keeps me sane. Today it was a visit to YUM Kitchen and Bakery.

Squeezing in lunch keeps me sane. Today it was a visit to YUM Kitchen and Bakery.

I also asked the doctor the unspeakable question.  What are we going to do when he retires?  Thankfully he’s still healthy and able.  He’s not planning to retire any time soon.  He hopes to continue working well into his 70’s.  One of his regular consultants (an infectious disease specialist I have a respectfully contentious relationship with) intends to continue working into his 80’s.

That may seem odd, but for me it’s actually very reassuring.  It’s hard to find good doctors and we have been a team on Orion’s behalf for a very long time.  When you are doing something you love, something that’s challenging, it keeps you vital.  Over the years I’ve seen first hand how devoted this doctor is to his work and his patients.  Nice to know it hasn’t gotten old.

Definitely YUM!

Definitely YUM!







Remember, it could be worse!

Remember, it could be worse!

You might recall last Monday when I thought I had too much to do and not enough time to do it?  Today is the day.  I have rearranged my schedule to be a little more comfortable.  One of the things I didn’t move was a trip to the dentist.

I’m not one of those people who fears going to the dentist.  I’ve got a pretty high pain tolerance and have been fortunate in the people who’ve worked on my mouth.  In spite of all that I don’t want to go.

This is all about “I Don’t Wanna”.   The appointment is for a cleaning.  No drama, no pain, just a sparkling smile at the end of the day.  I’m spending the morning pouting and dragging my feet.

I have no excuses.  I can pretend it’s because it’s a rainy day.  I can pretend it’s because Orion’s bus was late.  I can stand in solidarity with France.  That’s not what this is about.  This is about having to adult.

We all have moments when we just don’t want to have to be the grown-up.  Adulthood is not everything we dreamed it would be when we were kids.  Yes we can eat when we want to, if we can afford it, cook it, and clean up after it.  Yes we can stay up as long as we want, and drag ourselves to work the next day, and sometimes the day after because “catching up” isn’t as easy as it used to be.

Thing is, we have also learned that it takes more effort to whine and fuss than it does to just do the thing.   Get it over with and move on.  Put a carrot (or a donut, or a good cup of coffee, or a cocktail) at the end of getting it done.  We KNOW this, but it doesn’t always show in our actions.

Peace Around The World

Peace Around The World

So I’ll go to the dentist and get on with the rest of my day.  I’ll be grateful for a clean fresh mouth.  I’ll try to stay focused on the things I like about getting up and on with my day.  I’ll remember how nice it is to run my tongue over smooth clean teeth.  I’ll think about what I might like for a treat.

I’ll get over my “I Don’t Wanna”, and I’ll be pretty quick about it.  At least until the next one shows up.   (Have you started addressing those Christmas cards?)


Some of those waiting rooms are actually quite pleasant.

Some of those waiting rooms are actually quite pleasant.

I have a complicated medical history, as does my son.  The piece of the ACA that I was most excited about was the part where “pre-existing conditions” would still be covered when you changed insurance companies.  The second most exciting piece was the elimination of the “lifetime cap”.  If Orion had stayed on the same insurance he had from the day he was born he would have reached that lifetime cap long before he graduated from high school.  In fact, he may have reached it before he started kindergarten!

My list of Doctors, grouped by specialty, looks like the yellow pages.  I don’t have a geriatric specialist listed……yet.  We see the ophthalmologist, the orthopedist, the allergist, the psychologist, the internist, the cardiologist, the GI specialist, the pulmonologist, and the surgeon at least once a year.  Given that some of those specialties apply to both of us and that several of them involve ongoing appointments it is not unusual to average one lengthy doctors appointment a month.  Add on the extra trip for lab work or radiology and we exceed that.

My schedule has always been complicated by unpredictable demands.  Both Orion and I have been in physical therapy which can be anywhere from every other week to three times a week.  I have weekly allergy shots.  Orion’s occasional hospital visits can go anywhere from 3 days to 3 weeks (as can mine.)  There are also meetings with the county for Orion’s funding, meetings with the program staff to set up goals, meetings with public health professionals and social workers.  Then there are incidental things like taking the wheelchair in to get the brakes adjusted.

It’s difficult.  As a single Mom holding down a full-time job isn’t in the cards for the long-term.  Even when there’s been another adult in the household,  the demands of my life interfere with the expectations of employment.  My projects and volunteer jobs have also been disrupted by the demands of Orion’s health, and mine.  Part of the reason I’m so good at delegating is because I can promise it will get done, but I can’t promise I’ll be there to do it.  I’ve done a lot of supervision on the phone from the hospital.  I’ve made a lot of phone calls on the way to or from a doctor’s office.

Orion missed my parents 50th anniversary bash.  They stopped in the next day so he'd feel included.

Orion missed my parents 50th anniversary bash. They stopped in the next day so he’d feel included.

As a strong supporter of ANY kind of revision to the health care system I wasn’t too upset when the county letter came saying, “your insurance is up for review, you will not be insured after December 31.  Please sign up for the ACA.”   I was unhappy about the computer problems and frustrated with getting booted out of the system but I managed to make a successful application as of December 17th.  The computer said I qualified for help from the state program – MNsure – and that they would contact me.

Ok.  I figured I was good and would hear from them before the first of the year.  Not so much.  I started calling early in January.  MNsure couldn’t even see the application.   Apparently the federal computer wasn’t speaking to the state.  About a month after my original application was accepted I found someone who said, “We have the application, you should receive a letter asking for proofs.”   Now I’ve been insured by the state before and I know what that looks like so I asked what specifically they needed and faxed it in – to both the state and the county.

Funny thing I never, ever got a letter from the state asking for those proofs.  Apparently the county and the state aren’t speaking to each other.  One side has to actually scan the proofs into the computer and the other side has to analyze them for qualification.  Both sides agreed they had received them, they just weren’t in the system.  My proofs still weren’t in the system in February when I went to Pantheacon.  They are in one system, but the other system doesn’t have access to them.  They seem perfectly fine and you clearly are going to qualify but a determination hasn’t been made yet.   Every week I call and every week I get some version of, “I don’t know what’s holding this up.”

In the middle of March, literally 3 months after my original application, I am finally given the news that the case is processed!  I have been given an insurance affordability number.  Theoretically they will send the options for insurance plans that I can choose from and there will be an amount listed that will be my monthly payment.  None of that appears in the system.  Isn’t that strange?  In fact, this case that has an approval number issued in March, that I’ve been calling about every week, seems to have been closed in January!

MNsure asks me to go back to the ACA website and reapply.  Now I’m looking at the March 31 deadline and again the system is slow.  I have to establish a new file, new log in, new passwords and I am guessing at the taxes from 2013 (which I still haven’t done) rather than reading the form from 2012.  Eventually it goes through and again a note saying I’ll hear from the state.  (I still haven’t received anything in the mail from the state!)  I’m following this case much more closely and 48 hours after I make the application on-line I’m on the phone again.

Orion and I aren't the only ones at the doctor this week.

Orion and I aren’t the only ones at the doctor this week.

Yes they have the information from the federal system and yes they will need proofs.  I asked them to refer to the original case, since the proofs are actually there already.  I asked them to reference the old case in the notes for the new case.  I asked them to especially make a note that the original date of application was December 17, 2013.  I asked them to please expedite processing the new case. None of that is unreasonable.  I’m trying to establish a case for them covering my medical costs for the last 3 months, but that’s not today’s battle.

I call again a few days later.  Yes I have a case, yes it’s been approved but again there is no information about which plans and what co-pay.  The second case has stalled out in exactly the same place the first one did.  I have returned to limbo and I’m not happy about it.  Apparently I am the hole in the computer program and it’s going to take an IT guy along with the case worker to hand push this thing through the system.  Stupid computer.  I asked to talk to IT weeks ago, but everyone assured me just reapplying would be sufficient.

As of April 1st Success!   I have some kind of insurance approval that’s real.  (I STILL haven’t gotten anything in the mail and I’m not convinced this isn’t a joke.)  I haven’t got a plan, but I do have the insurance billing code from the state.  So last week I ran to the pharmacy and to any doctor I could get in to see (and Orion’s appointments as well).  I’ve got another week of appointment catch-up and the rest of the month to work on addressing a shoulder injury that will require some tests and physical therapy.  All the things I didn’t dare do out-of-pocket.  Hopefully by the end of the month I’ll actually have an insurance plan and be able to proceed with what the tests I took in December recommended.  Most of those need prior authorization.  We’ll see.

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