There’s a fine, fine line

I have a few different medical things I need to get looked at.  And I’m dreading the process of doing just that.  Not even dreading the appointments, etc. themselves (well, except for the dentist – that’s an entire post in itself).  Being medically complicated is, well, complicated.  Nothing seems as cut and dry as it should be.  I like my specialists, they at least seem to have some idea of what’s going on and what their part is.  This is good, but I miss the days of pediatrics all being in one building and who all seemed to work well together.  My pediatrician was also my geneticist (and currently volunteers at the hospital! I ran into him last year when I was going in for an ear infection…), and knew all my other specialists well.

Now it kind of seems like the specialists all kind of know each other, but the internists don’t.  Which I guess is fine since my specialists are more important to me ultimately, but it can be annoying.  Especially annoying since my HMO doesn’t give me the option of making specialist appointments online (seriously, who’s going to make too many doctor’s appointments?!).  Not that I necessarily mind calling but it’s just funny that we’re not trusted to actually make our own appointments.  Had a hilarious incident a few year where some confused employee tried to tell me that my doctor didn’t exist (turns out I needed to call the Eye Department directly for that one, who knew?!)

So I kind of feel, as a reasonably well-informed medical consumer who has unique health care needs, that I walk a fine, fine line between informed and being a pain in the ass.  I was raised as an active participant in my own medical decisions and try to maintain at least a basic level of understanding of what’s going on and what I should be doing.  But I also don’t want to be that patient who all the doctors are talking about around the water cooler…

(And, in case you were wondering, the fine, fine line reference is from Avenue Q)

“I was here”

I wanna do something that matters
Say something different
Something that sets the whole world on its ear
I wanna do something better
With the time I was given
I wanna try to touch a few hearts in this life
Leave nothing less than something that says
I was here – I Was Here, performed by Kristin Chenoweth

With this being Thanksgiving, I guess I’m grateful for the opportunity to explore how this will happen. I am thankful that I have the resources, both emotional and otherwise, to live my life how I want to.  Needless to say, I am thankful for family, friends and various furry creatures who impact my life in a myriad of ways.


I still struggle with the should-haves, would-haves, should-I’s of life.

I wonder if I should be more socially active, more directly involved in causes… if my completely corporate/academic jobs are a cop-out from dealing with the tough stuff as a person with a medical condition.  And yet, I like the freedom of not being defined by my condition.

So I think the answer is that I’m still figuring out my place in this complicated, convoluted series of communities.  I will find a way to say “I was here” in my own way, sometime. Maybe this writing process is it, after all.

Moebius syndrome and fashion emergencies


I have more meaningful posts I will write. But for now, some levity:

That rare moment when having Moebius syndrome equates to a fashion emergency.

I don’t walk around saying “gosh, my right leg is so much skinnier than my left leg” but every so often I am reminded about that. Usually when trying on or wearing knee-high boots.

But these sweatpants just hang/don’t hang in precisely the wrong way on me so I end up continually trying to make them even. Luckily they’re soft and I otherwise like them, and I’ll forgive looking completely disheveled for hanging around.

I learned my lesson: no more three-quarter length sweatpants with tight bottoms for me!

You know you have a chronic medical condition when…

You are ecstatic about getting health coverage!

It’s so not funny but it is actually kind of hysterical.  My conglomeration of part-time jobs right now don’t give me health coverage.  I have too much in savings to be eligible for any government-sponsored plans for people with pre-existing conditions. 

I wanted to go back to the HMO I have had for most of my life because I trust the doctors and specialists, and know they are knowledgeable about Moebius syndrome.  I could have gotten a PPO option through group coverage from my alumnae association, but really wanted the HMO.

Applied online via their long exhaustive form, which is rather confusing for someone with one medical condition that causes a bunch of others!  My first run-through, I think I had “neurological impairment” listed a few times so it looked like I had multiple neurological impairments! Oops. So, figured out those things and sent it off.

Round One: got denied for BOTH neurological impairment and asthma.  Which technically isn’t correct because my doctors have debated whether or not I actually have asthma or whether it’s just low muscle tone… but it’s treated like asthma, so I guess it’s the same concept to them. And of course I was denied for Moebius syndrome. Wasn’t much of a surprise.

My mom and I crafted a letter essentially saying: a) any extensive treatments for Moebius syndrome ended 20 years ago! and b) asthma completely controlled by medications.  Sent that off.

And lo and behold, I was actually approved after just that short letter. Which leads me to ask a whole lot of questions about who’s reading applications and appeals! If they’d just looked through my medical files briefly (which they have, since I was a patient) they would have clearly seen my basic healthiness! Oh well, all’s well that ends basically well.

I’m relieved to have that behind me, and happy to have access to my wonderful doctors and specialists who are knowledgeable about Moebius syndrome.  It was quite nerve-wracking, though!