What’s the use of health data…

if you don’t interpret things?

I’m a librarian. I like knowing stuff, or having it at my disposal if I need to look it up. Therefore I am inherently a fan of having access to a bunch of my medical info…except when there isn’t a good explanation to go along with the data.

Finally got the blood tests done (that were a month overdue, my bad!) Got an e-mail literally the next day with a handy link to the results: yay! They even came with charts. Yay!

So…layman’s terms: I know my numbers were too high last time. Are these numbers low enough? Who knows…because not only did the online link to the test results not contain any kind of explaination.

I could consult Dr Google, but I’d prefer not to (because I know how unreliable that Dr Google can be). So I’ll wait for an update from my doctor and meanwhile mull over the value of patient information without actually telling us what it means. 

Coordinating bottle colors

True story: I opened up my mail-order pharmacy order, and was thoroughly impressed with the color-coordination of my meds. For some reason known only to insurance companies, I used to get Ventolin way back when, then it turned into generic Albuterol, and now it’s back to Ventolin! I have to admit I like the colors (and once again the thingy that shows you how many doses you have left is genius!). Then I opened up my new thyroid hormone (higher dosage, since my levels were still too high)… and it randomly comes in a pretty different blue bottle! I have to admit I like that it’s different. Who knows why, but it’s nice.

Just a little medical artistic randomness. 

Packing with PillSuite (sponsored post)

Packing medicine for trips can be kind of a pain. So many choices: to bring the bottles or not? to sort by med or sort by date? how much extra to bring?
As part of the Chronic Illness Bloggers Network I was given the opportunity to test out a product called PillSuite which aims to help with some of these issues.

PillSuite comes with three things: a pill sorter, baggies, and a sealer for the baggies (along with batteries for the dealer, which are included).

I’m going on a short weekend trip, so I sorted my pills into 5 daily slots – I took out the two things full of vitamins as I realized I take one a day so that didn’t make much sense to sort them together!

From the sorter I used the funnel to put each evening’s pills in one Baggie, then sealed it using the cute green sealer (I love the colors they chose!)  
The process of dealing them took a bit of getting used to – thankfully you can re-do it to get the seal complete if you don’t get it right the first time.

I made a Baggie for each evening of my trip, and only have one thing to think about – I need to take one pill half an hour before the other two so will need to carefully store the other pills for a bit.

I’m interested in testing out the baggies during this trip, and will edit this post in a few days with a review of how they work in practice!  

I think this will be great for some trips but won’t replace my trusty resealable tiny baggies for some uses.

UPDATE: I used the PillPacks for my 4 day trip, mostly with success! I had a few that didn’t really close al the way, but I think that was really user error instead of an issue with the sealer itself! It was a little tricky with my medicine regime, since I take them at two times per night and the PillPacks aren’t resealable – but I made it work! Overall this is a fascinating and useful product. Love that they’re biodegradable, too!

Bursting the Happy Healthcare Bubble

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.


In the rare disease community, so much is written about finding people who share your same condition. And while that is indeed valuable, one of the most impactful parts of my MedicineX experience last weekend was how similar experiences are across varying conditions.

That’s not necessarily a positive thing – the undercurrents of frustration, pain both physical and emotional and the strain of chronic illness was palpable in the discussions among ePatients. But what was also overpowering, in a wonderful way, was the strength of an informed, committed and driven health care consumer. I was in awe of my fellow attendees.

There comes a lot of “responsibility” when one is a smart and (relatively) accomplished person with a medical condition. To be an example (of what?), to educate, to inform, to advocate. Depending on my mood I am sometimes all about this and sometimes worn out by it. Approaching MedX, I was a bit fatigued by everything. I was questioning why I was involved in things, if it really mattered. But MedX and the discussions I had and speakers I saw reframed my thoughts.

So… what are my takeaways from MedX? In brief: to be informed, to be engaged, to be persistent. It’s that I have a responsibility as an ePatient to myself, to the Moebius community, and to the ePatient community to push the discussion about care, physician/patient relationships and healthcare as a person with a chronic condition forward.

Moreso, it’s that this conversation is interesting and engaging. That while a string of bad genetic luck might have landed me in this situation and with these experiences, it also means that I sometimes get incredible opportunities from it. And that I should embrace them. 


Mailing my spit

  So this is what making saliva samples to some of the preeminent Moebius syndrome researchers in the country looks like! They are actually going to sequence the entire genomes of both me and my parents, which is pretty cool!

They gave me the option to get information on everything – even what’s totally unrelated to Moebius – and I said yes. Mainly because more information is better in general, and I’m interested with some of the other autoimmune things I have going on… who knows what’s happening with my genes.

Excited to send this off and see what information it yields.

A Love Letter to Singulair

Okay, I know I’m being facetious. I blame the Dayquil I’ve been on for the last 5 days as I get over my first cold of the season. But that’s beside the point.

This post is about my utmost appreciation for whatever pharmaceutical company who developed Singulair when I was in high school. They have saved my lungs, and my sanity.

My middle and high school years were rough health-wise: pneumonia a few times, a nasty collapsed lung and hospital stay, and lots of missed school days due to lung issues. And then Singulair came along, and I’ve had very few truly nasty respiratory issues since.

I still get sick all the time, and am forever analyzing my snot to see if yellow has turned to green (gross, I know, but you gotta do it!), but I am thankful that although I feel icky, it usually doesn’t translate into actual infections from the cold stage.

When you’re a student, even in college and grad school, it’s easier to be sick. It’s a pain making up work and such, but as far as real-world ramifications of being sick… there aren’t that many. But being in the real world of work with a chronic illness means taking care of myself and making sure I have my sick leave available for the really bad times.

So every night I take my (now-generic, finally!) Singulair, I’m eternally grateful.

(yeah, I just wrote a post about how much I love big pharmaceutical companies and their products.)