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Archive for the ‘The storm’ Category

Hope only makes sense when it doesn’t make sense to be hopeful.

When I first read this speech, I was in a place of great uncertainty.  My health was failing, I was seriously struggling academically for the first time in my life, and I was 3000 miles away from many of the people I love most dearly. Hawken’s words were earth-shattering and life-changing. They resonate with me each and every time they come to mind. (I encourage everyone to read his words as the quote above is just a tiny sample of the way words can move mountains by speaking to one soul at a time.)
As an environmentalist (and humanist), his speech refers most directly to our relationship with the environment, but it certainly doesn’t end there. In fact, it barely begins there. When asked whether he is optimistic or pessimistic about the future (specifically of the natural world), he responds that a scientist can’t help but to be pessimistic when given the data. However, a human being can’t help but see the abundance of “ordinary people willing to confront despair, power, and incalculable odds in order to restore some semblance of grace, justice, and beauty to this world.”
In the last few years – and more specifically the last year – the data about my future has been pummeling my spirit to the ground. It is incredibly difficult – and nearly damned-well impossible – to hear about my failing systems and what I have to look forward to in the future without losing all hope. To hear that these continued sustained infections are not compatible with life.  To be disappointed each and every time you make a plan and have to cancel.  To awake upon a new day and find that you feel absolutely no better than you did just twelve hours before.  And indeed one does become hopeless.  It only makes sense when given the data. Luckily, it doesn’t end there; humanity gives endless hope when reality attempts to strip it away.
There is a shelf in my living room where hope collects like dust. Over the last twelve months, I feel shame that the shell of my former self has found such difficulty in expressing just how dearly I appreciate the love, care, and hope that has come my way, but please know that the cards, pictures, books, jewelry, pillow cases, balloons, and tokens of love serve as a daily and fervent reminder that hope is most definitely worth having. Especially when it doesn’t make sense.
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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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There is nothing like looking, if you want to find something.
The Hobbit, JRR Tolkien

I had to look back at my last post (which was just six short days ago) because so much has transpired over such a short time. Although there were some frightening periods, we have much to be grateful for. The most important is your support. It means so much to me to read notes of love and encouragement. I could not make it through those difficult times without it. Thank you, thank you, thank you!

I’ll try to go through looking and the finding of the last six days as methodically as possible, but there’s much I don’t remember, so I apologize for the holes.

Just minutes after I posted on the latest saga with the positive news that my fever broke, I spiked another fever at 102.3. Despite 2 different antibiotics. Despite round-the-clock Tylenol. Although the fever was miserable, it seemed the treatments finally took hold on Tuesday morning and I went fever-free for just over 24 hours prior to discharge. During that time, we saw the Infectious Disease (ID) doctor who told us the bacteria grew out as MSSA, or Methicillin-Sensitive Staphylococcus Aureus, which is far more favorable than the nasty MRSA, aka Methicillin-Resistant Staphylococcus Aureus. We thought we were in the clear. Although he clearly still wanted my port removed, I was able to doe-eye the hospitalist into allowing us to try to save it so that I could swim and enjoy the last three weeks of summer. We got our discharge papers on Wednesday afternoon and my home health nurse met us at home for a three-and-a-half-hour review.

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Last week was Home Parenteral Nutrition (HPN) Awareness Week.

As many of you know, Total Parenteral Nutrition (TPN) keeps me alive. It’s called Total PN because I receive essentially all of my nutrition parenterally – through a line in my chest that goes straight to my blood (“parenteral”) rather than through my gut (“enteral”). Fourteen hours every day I am hooked up to an IV line that delivers this nutrition. The other ten hours I am hooked up to a line that delivers what is essentially sugar-water which keeps my blood pressure and blood glucose levels stable. I am very grateful for these lines.

However, there is a very real and very serious downside to requiring parenteral nutrition. Part of this downside is that a line that constantly enters your blood system, right next to the heart, where it can be pumped throughout the entire body; this line can introduce bacteria and yeast to the bloodstream causing a very serious infection called septicemia. This describes the reaction the body has to foreign bodies in the blood stream. (“Sepsis” is the same reaction but to an infection in any part of the body.) It can involve changes in temperature, heart rate, blood pressure, white blood cell (WBC) count, and respiration rate.

Septicemia has seemed to find a friend in my body. And usually when it hits, it hits hard – bordering and even reaching septic shock. It’s scary and painful. My brain feels like it’s a ferris wheel, spinning upon itself, and nothing makes sense. And because my white blood cell count – white blood cells fight infection – are low/low-normal when well and do not seem respond to infection, we have no warning. In fact, doctors have nearly discounted my fever numerous times because of a lack of WBC response only to find out my body is going full-out septic just hours later.

 

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I’ve been home for nearly two weeks now. Recovery has been slow and has sapped me of most of my excess energy so many apologies. Because there’s so much to cover – and I’m having difficulties organizing my thoughts – we’re going to go about this bullet-style.

  • I’m home. I was discharged with a four-week course of IV Vancomycin (a very powerful antibiotic) at a very high dose. Because we never got those sensitivities back (i.e. what bug we’re fighting and what antibiotic is best to fight it) and my reaction to the infection scared them (though I assure you, it did not scare nor surprise me or Keith), the doctors are playing it safe. I guess that’s what they do best. I was also on Cipro (another antibiotic), but I have finished that course.

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Considering I am currently back at MGH for a central line infection (which is being treated as sepsis due to my plummeting blood pressures and skyrocketing temperatures and heart rate; this could, however, be due to my really screwy autonomic nervous system), I thought I’d address the issues we’re currently encountering with my current former central line (a PICC in my left arm) and the debate over what kind of line is most appropriate for the long term use we’re envisioning.

How did we get here from there?
My GI tract (from stomach to colon) is essentially paralyzed. After numerous tests and a 25-day hospital stay when it officially shut down, a GJ-tube was placed. Five days later, I was readmitted partially because the GJ-tube was not providing enough of the necessary nutrients. The solution was to place a central line (a peripherally inserted central catheter or “PICC”) so that I could receive calories and vital nutrients intravenously. At this point, the PICC and TPN were planned to be short-term aids until we could build up the feeds to my jejunum (the middle part of my small intestine). A couple months later, my GI doctor said it looks like TPN is the most viable long-term option for me.

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When it rains, it pours.

It often seems like all the bad stuff gets clumped together in one big barrage of awfulness. This hospital stay is surely no exception.

First, we’ve dealt with a few episodes of dystonic storms. These are often triggered for me by exhaustion, physical pain, and exertion. When these three things are combined, the storms are worse. Dystonia is a movement disorder that causes involuntary movement and posturing of different muscle groups. I’ve suffered from dystonia in my left side for about 9 years. Recently, the storms have caused me to have bilateral leg involvement. It’s painful and the treatment often given cannot be used on me due to the underlying mitochondrial disorder. In short, it sucks.

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