Dear Marie,

(I don’t actually know your name but I decided to call you Marie after Marie Curie my all time favorite scientist)

I don’t know you. We’ve never met. I don’t even know what you look like. What I do know is what your geneticist (and now my geneticist) told me. You are 23ish and a physics major at MIT. You are also very sick. So sick that when you flew down for your last visit our geneticist answered your question of if you’ll make to thirty with a no. She told me this to assure me that my case isn’t severe. She told me that to comfort me. And even though i know she had the best of intentions, I’ve thought about you a lot these past few days. I want to tell you I’m sorry and offer you some comfort but I don’t know how or what to say. I’ve never been good with talking. I think of how strong you must be. I’m in pain constantly but on a scale of 1-10 I hover around four. Given the short description I got, you are probably twice that constantly. You must be smart too, majoring in physics and all. That’s why I chose Marie. She was the first woman to win a Noble prize and she won it in physics (She also won a Noble Prize in Chemistry but you probably knew all this). I wish I had the chance to meet you. It sounds like we are around the same age and have a love of science in common. Also for the very selfish reason of getting your advice. I wish you all the best and you and your family are in my thoughts and prayers.      

My Problem with Safety Goggles

I hope I’m not alone in this but I always have the issue of fog with my safety goggles. I also get embarrassed very easily and blush. This does not help with the fog situation.

For synthesis lab (or Organic lab 1) the professor said that you had to wear the goggles if you wore contacts. So dutifully the first day of lab I bring my new goggles. Now our first lab class was actually just safety so we only needed to wear our protective eye wear and not our lab coats. Before we go in everyone else takes out the safety glasses which look sleek and not bulky and awkward. I’m looking around thinking surely I can’t be the only person who wears contacts. My friends offer me words of sympathy as I pull on the green bulky goggles, which immediately start fogging up.”You need to open the vents,” my TA instructs. There are four white plastic vents that can pop open (which makes you look even more ridiculous).  I open my vents but sadly the damage is done, and the fog is covering a thin line at the top of my vision. But I can still see and so I sit through the safety lecture. Then my professor gets to protective eye wear.

“Now sometimes, especially if you’re a guy because us guys tend to sweat a lot, the goggles can get really foggy,” he says. ” I see yours are foggy up pretty bad,” he adds looking at me (I’m a girl by the way). I can feel my face start to heat up. The fog spreads. He continues to talk about how he can order me special goggles if it continues to be a problem. By this point I can’t even see him the fog is so bad which isn’t helping my embarrassment. Both of my friends are trying very hard not to laugh because they know me and know that the extra attention, while well meant, is just adding fuel to the flame. I manage to nod and he , thankfully, moves on. The three of us laugh and giggle about this all the way back to our dorm( I also had the added pleasure of goggle lines on my face). 🙂

Now as I said, I get really embarrassed really easily. I had my first lab class of this semester earlier this week and of course had some fog issue (though no where near as bad as last time).  This time it was later in the class period and we were doing an actual lab. While we were waiting on a reaction to finish, our TA’s were talking to us. There are only eight people in the class. One TA is talking to two people at the front of the room. The two people behind me are talking to each other and the other TA is talking to the three people at the end of my bench. This leaves me to observe everyone else (which I enjoy, being an introvert). The TA at the end of the bench notices me however and probably thought I was lonely. He came over to talk to me and the fog crept in. I don’t know why my face got red,which was the cause of the fog. I mean we were talking about grad school for goodness sake. I managed to talk fairly normally in spite of this but eventually he noticed that my field of vision was narrowing. “Wow, your goggles are really fogging up, that’s so strange” he commented. I managed to pretend to be surprised by this as well and when he said I could step out for a minute  I hastily made my exit. I also had goggle lines for three hours after lab. :p

Last Will and Testament

” Birth date?” The nurse types in my response. It’s June and I’ve answered these medical questions before now a couple of times. Little did I know that by October I would be able to answer in rapid fire mode. But for now I’m sitting in the waiting room of the out patient facility for the local hospital. I’m hear for a spinal tap which, before all the waivers they had me signed, I thought wouldn’t be a big deal. I thought I would go in, bend over, lift up my shirt, be stuck with a needle, and call it a day. I was very wrong.

“Do you have a will?” That’s a new one! I look at the nurse. She’s smiling, having guessed my answer but she has to ask anyway. “No,” I say. A will? Why would I have a will? I’m twenty? The most valuable thing I own is probably my laptop, which my parents bought for me. What would I even leave in my will?
By this point they have all my information and my mom and I are back to sitting by the window. As we wait I’m trying to imagine what my will would contain. “To my sister I bequeath all my jewelry.” But we have such different tastes, so I can’t do that. She wouldn’t want all my jewelry. My brother might if he was allowed to sell it (Our future Donald Trump). The most valuable items I own (besides my jewelry) are my phone, and my laptop, which I guess are really my parents since they did the purchasing. I’m struck in this moment by how young I really am, even though I’m legally an adult.
That theme has continued throughout this whole ordeal. I’m at such a weird age it seems. I’m to old for most pediatric specialists but at the same time I’m very young for most adult specialists. I have to sign all my medical forms and forms that allow my mother to receive my medical information even though my parents are the one that pay the medical insurance. At this out patient center I’m definitely the youngest person there (most of the others are there for heart surgeries)
My mom can’t even come back with me while they get me ready for the spinal tap. They tell me I need to change into a hospital gown and socks, then the nice nurse will be back to get my IV started.
Now might be a good time to mention I don’t do well with needles. Also I’ve never had a successful IV. Notice I said successful not attempted. I had gotten super dehydrated on a mission trip. They tried four times to get an IV in me but with no luck. But I’m in first world country this time. In a hospital so I reassure myself that this time won’t be anything like that… right? The nurse tries in the back of my right hand first, After the needle goes in she tries to situate the IV and it blows. Onto attempt number 2, with the other nurse and the other hand, no such luck there either. Bring a another nurse for attempt number three. “Surely they can’t beat my record of four” I think. Wrong(with a huge bruise for evidence). Attempt number four smaller needle. I feel bad for my poor nurses. I’ve given up trying not to cry by this point. They have let me squeeze their hands as they rotated attempts. NOw they call in The IV Team. The IV Team, turns out to be an elderly women pushing a cart. Donis has been at the hospital for probably half a century, and is the all time pro at IV’s. She takes my arm, looks at my veins, and before I have time to get too nervous the IV is in. I feel the four of us (me and the three nurses) exhale. My nurse smiles at me and calls me a “trouper”. ” I’ll go get your mom for you sweetie,” she tells me. My mom comes in not very long after and I can tell by the look on her face that shes knows what just happened. “Oh, sweetie,” she says with tears in her eyes. I give her a weak smile and a big hug. She comforts me and I do my best to laugh and make jokes about it ( how I’ve beaten my personal record, how I may ask them to just leave the valve in for future use.. etc). I then get rolled to radiology. The nurse there tells me what to expect and after asking if we have any questions, escorts my mom to another waiting area. The doctor gets there rather quickly and I roll onto a table and get situated on my stomach. My doctor is super nice and chatty. He lets me play music from his i-phone. He injects Novocain into my back which hurts a little but doesn’t last long. I hear him say he’s in. I ask him is my spinal fluid is flowing. It is but slowly. Before I know it he taps my back and says “we’re done sweetie”. I hadn’t felt the needle go in or out. I’m rolled back to the staging/recovery area. I have to lie flat on my back for four hours. My mom feeds my a sandwich and we watch the Euro Cup. This is the most “sick person” thing I’ve done so far. I had never spent so much time at a hospital. It wasn’t that bad all in all and I got to keep the sock. Also I learned that spinal fluid is clear (which was slightly disappointing).

The Middle

“Whether I shall turn out to be the hero of my own life, or whether that station will be held by anybody else, these pages must show” David Copperfield by: Charles Dickens

If I had realized in May how drastically my life was about to change, I might have started this blog sooner. As such I’m starting in the middle of the medical saga that is my life. But when I first got sick, I was under the impression that the doctors would figure out what it was promptly and I would be back to running my half-marathons in no time. However seven months and several medical tests later have proven me to be wrong in this assumption. I don’t know what I have, how long I’ll have it, or how tomorrow will go( like most humans 🙂 ). I don’t want this illness to define who I am but I’m accepting that it might define a small part of who I am to become. I’m a chemistry nerd who loves to read, and disney movies. I would like to think I have a sense of humor. This blog will not be high quality. There will be typos and misspellings. However this blog, like my life, will be about more then my illness and hopefully might make you laugh 🙂