When you are at the NIH Clinical Study for a Natural History Study, your healthcare life is pretty darn good (well, besides the fact that you have medical stuff going on that landed you there in the first place!)
Every doctor you see in the course of your study protocol is an expert. Every doctor you see knows your rare disorder. Every doctor you see is interested in you and your overall health – not just their specialty.
One can get quite spoiled.
That’s all the preface to my newest medical slight debacle: I refuse to start a new treatment for a newly-diagnosed condition without seeing a specialist first. Like… on what planet does that make sense for patients?! Do people actually agree to that?!
I know I feel icky. I know my thyroid numbers were weird. But that’s the extent of my knowledge… and there’s no way I’m blindly starting a new-to-me medicine without at least seeing a doctor! <ends big over dramatic sigh>
I fear (but also love) that the NIH has thoroughly spoiled me. I deserve it. Everyone does.
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!