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In the depth of winter, I finally learned that within me there lay an invincible summer. ~Albert Camus

Sometimes those of us with chronic illness get so caught up in the can’ts. The shouldn’ts. The mustn’ts. I decided to focus this summer on the things I can do. From embracing the lives of loved ones lost to adventures in lands (not-so-)faraway. So we celebrated, joined, conquered, ventured, traveled, laughed, cried, and smiled. And we experienced life. It didn’t matter that I did most of it hooked up to at least 3-4 tubes at a time. It mattered that I did it.

Now that the summer comes to a close (thank you, labor day), I thought I’d go through the tradition of writing the back-to-school essay “What I did this summer.” Then I rethought. And decided I’d show you.

What I did this summer:

{And wished her Happy Birthday}

{At the 2011 UMDF Symposium in Chicago}

{With my Great Aunt Arden at the Sears Willis Tower}

{Lab safety is a must while tutoring}

{Sisters Day Out – Southwick Zoo}

{First time at Niagara Falls – Maid of the Mist}

{Seneca Falls, NY – With two of my most influential people – On the bridge from one of my favorite movies, It’s a Wonderful Life}

{For the first time since my license was revoked for seizure activity}

{TPN bag, enteral tubes, and all!}

{White Mountains in NH with my favorite in-laws}

{Haven’t attempted this since I was a gymnast – take that mito!}

{At the 2011 Mighty Matthew Benefit in Plattsburgh, NY}

{We love you, Princess Eithene!}

{So blessed to live in Boston, the Medical Mecca of the World!}

{With 4 adults, 2 kiddos, 2 dogs, and a partridge in a pear tree}

{Disappointing from the weather standpoint, but fun nonetheless}

{With a grand closing to a grand summer!}

And no one can say I didn’t do. Because I did. I really did.

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About 7 hours after I posted my last blog, I was finally settled in my room. By that time, my temperature had started rising. Before I fell asleep (around 8:30pm), my temperature had risen to 100.6. That’s nothing, my body told the nurses, just you wait and see! But the next vitals (around midnight), my temperature had risen to 101.8. I can’t still do better than that. My temperature at 4am was 102.4 and rising. Almost there… I hit 103.2 before it started going back down.

But my temperature wasn’t what really had them worried.

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I want to start out by thanking our Brandeis math friends (and significant others) for keeping us entertained last night with a few rounds of the game Dominion. I’m incredibly grateful that you were around to keep my mind off the reasons I’m still inpatient and rather focused on some fun!

I especially appreciate the distraction as yesterday was not the most pleasant day. I started the day finding out my potassium levels were critically low. (And how the medical team didn’t know that they were even getting low beats me.) I was started off on a bag of potassium. I finished it 4 hours later and had my blood drawn again. Potassium levels were still critical and magnesium levels were incredibly low as well. Two more bags added to my IV pole. Blood drawn at the end of those. Potassium rose to 2.9 (low “normal” is 3.5). Another bag hung through the night. Blood drawn and TPN hooked up overnight. Four hours later blood was drawn again. Potassium went down! Needless to say, I’m hooked up to yet another bag of Potassium in addition to the TPN. This had better work!

The low Potassium levels have certainly been taking effect on my body. My heart has been doing some crazy things. Not only have I been rapidly swinging from tachycardia (high heart rate) to bradycardia (low heart rate), but I’ve also been skipping beats pretty regularly. My hospitalist thinks this will likely improve with my electrolyte levels so it’s nothing to be too concerned about – yet. We’ll revisit the issue once my electrolyte levels have improved.

On to the good new… Yesterday, they finally placed a PICC line so that I could get some IV nutrition (TPN – which looks like melted marshmallow fluff) while waiting for the GJ tubes to help. An added advantage of the PICC line is that all that blood that they’ve been drawing over the past 30 hours has been able to come straight from the PICC – no more sticks!!! And once the GJ tube is in and properly working, we can pull the PICC line.

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While tutoring last week, we took a trip to the Museum of Science. While there, we spent quite a bit of time in the Theater of Electricity. T seemed so enthusiastic about the technology that I joked she could be an engineer when she grew up.
“No. I want to be something else.”
“Well, what do you want to do when you grow up?”
“I want to cure mitochondrial disease.”

I do, too.

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