Ninja

(Originally post 4/29/2011 on soundslikeaninja.wordpress.com)

A Brief History of the Ninja.

For anyone expecting a story about any or all actual Ninjas, turn around, this is not about Ninjas.  This post is not related or about any fictional or actual Ninjas. Though maybe people would prefer to read about that.

For those of you still with me, here’s a brief history of how my Ninja came to be (Warning: this relates to medical issues, if you don’t want to know then please don’t read any further).

So back in May of 2009 while visiting my boyfriend at college/finishing up my first and last failed attempt at graduate school (another story for a another time) I developed some intense joint pain, mainly in my fingers and wrists with the occasional sharp pain in my jaw (that made chewing fun).  Let’s just say the drive home from NJ to CT was a pretty painful one.  Not being one to go to the doctor unless something is really not normal, so I made an appointment with my general doctor when the pain did not subside for about a week.  Due to some awesomely, funky, past blood tests which included a positive ANA test I had had a year and half ago when I suffered from a blood clot (DVT) in my lower right calf probably due to my birth control, my general doctor had me repeat the ANA and had me tested for bunch of other things (Lyme, RA, etc). All the tests for other diseases came back negative but my second ANA test came back positive.  So my general doctor being stumped, referred me to the big guns, a rheumatologist.

Two weeks later and I’m sitting in a rheumatologist’s office with children’s drawings covering one wall and Sesame Street character stickers gracing the walls of her exam room.  So there I am, with my new doctor discussing what the heck I could have.  She came up with 3 options: 1. Lupus (I’m thinking, shit, that could really, really suck) 2. Drug induced lupus (not bad, just wouldn’t be able to take any medication that relates to medication I was taking at the time of my first bout of joint pain) 3. Sjogren’s Syndrome (I had never heard of it but it sounded just about as bad as Lupus).  Needless to say when I left the doctor’s office with orders for more tests and another appointment in two weeks to discuss the results of the tests, I was really hoping for option number 2.

Two weeks goes by and I’m sitting in the same office with children’s drawings all over the wall (I later learned that my rheumatologist specializes in pediatric rheumatology).  So there I am, in the kid’s office with my Mom and we learn it’s option number 3, Sjogren’s Syndrome.  Not at all what we wanted to hear but it could have been worse.  So the next ten minutes or so were filled with questions, education and treatment plans.  Looking back at it I think I was in a bit of shock, I didn’t ask nearly enough questions to begin with or get clarification of enough things.  Luckily my Mom was more on top of it than I was, but I do think she was in a bit of shock too. We left the office that day with what, to me, felt like a huge weight on my chest.

The next few days were tough, walking around with this information.  I didn’t want to tell anyone but I knew I had to, mainly my family.  A week or so later, there was a family dinner, were I relieved my most wonderful news to my o so understanding sister at the time (Sorry sis, that was a sarcastic remark). For anyone who doesn’t know my sister, well let’s just say she is . . . well . . . my sister.  That dinner was not fun and I was not happy with my sister for a while after that dinner.

After the faithfully terrible dinner with my sister, I wasn’t too excited about telling my brother the next time he came over for dinner but apparently I should have had more faith in my big bro.  After I went through my overview of Sjogren’s and what it is, the first thing he said was “It sounds like a ninja.”  I couldn’t help but laugh and at that moment, a bit of the weight that I had been caring around since getting my diagnosis, lifted.  I don’t thing I had ever loved my brother as much as I did in that moment and I don’t think he knows how much that helped me. Maybe now he does?

So now when referring to Sjogren’s in company of people who don’t know or just when I feel the need to make light of the situation (usually during a flare up) I refer to SS as “my ninja.”  And that’s now my Ninja came to be.

Okay, maybe that wasn’t as brief as it could have been, I’ll try to be less winded next time.

Don’t worry this blog wouldn’t be completely devoted to all things Ninja related but I will be using it to track any and all thing Ninja related to me.

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