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Archive for the ‘reality’ 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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Wednesday morning we set off for our first big adventure in nearly a year. The destination? Chicago for the 2011 UMDF Symposium. The goal is to learn more about mitochondrial disease (you know, that pesky neurometabolic disorder that we can’t seem to shake) and the current treatments and research as well as meet up with members of the mito community from across the country. We’re pretty stoked to say the least.

But it certainly wasn’t easy to get here. First, we had to apply to a bunch of grants to pay for the trip. You see, Keith’s still a grad student and my work hours are few and variable; we just don’t have the kind of money necessary for this kind of trip – or any kind of trip for that matter. Luckily, we were able to get a good chunk of it covered.

After that, we had to coordinate all the medical mess. Because I have numerous medical interventions intended to keep me healthy and happy, nothing is ever exactly “easy.” For one, I’m on 24/7 intravenous infusions to provide nutrition, keep my autonomic nervous system content, and my blood glucose stable. The infusion bags are heavy, bulky, and many. And they have to be refrigerated or the contents will become denatured and useless. Bummer.

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One year ago, a very special little girl came into our lives. Eithene (pronounced Eth – eh – nee) Rose was a 4-year-old beautiful ball of spunk who, like me, lived with a combination of Mitochondrial Disease (an neurometabolic disorder) and Ehlers-Danlos Syndrome (a connective tissue defect). She was also born with numerous birth defects which are together known as VACTERL Association.

Over the last year, Keith and I have visited with Eithene and her family (mom Jessica, dad Sean, brother Gabriel, and Aunt Jill) whenever we were in Boston. We have grown to love them. We couldn’t leave a single store without Keith seeing something that reminded him of Eithene or one of the other mito kids we regularly visit. Eithene’s story, however, is somewhat unique. Over the time that we’ve known the family, Eithene has only left the hospital for about five days last July. Other than that, she’s mostly been in a room on the ICP (Intermediate Care Program, a step-down of the ICU) at Children’s Hospital Boston. We’ve visited through numerous infections and medical crises and seen the strength she exhibits on a daily basis. Her mother’s love and faith have been unwavering and inspiring. Not only that, but mom Jessica has helped me through a large number of my own medical crises.

Saying "hi" to True

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Today you are You, that is truer than true. There is no one alive who is Youer than You.
-Dr. Seuss

Sometimes it surprises me how happy I am. How comfortable I am in my own skin. A year ago, I’m not sure if I could’ve seen myself this happy despite all that has changed (my zip code, my health, my occupation, my income, my aspirations, etc.). But I’m honestly, truly happy.

Keith and I deal with a ton of stressors with our daily life that shock many people. For instance, every day this week, I’ve had at least one medical appointment, over half of which were in Boston. (This is not out of the ordinary.) In addition, we’re watching my niece and nephew while my sister recovers from surgery. (This is something that Keith likes to call “birth control.”) We also deal with daily medical regiments including IV nutrition, stoma care, catheterizations, sterile procedures, and medical interventions. (This is in addition to Keith’s full-time student status and my work tutoring, researching, and volunteering.)

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April is Autism Awareness Month. Although Autism has been getting good press, many still don’t realize it’s a spectrum. Language skills, social skills, and development can vary. And autism can strike anywhere, regardless of ethnicity, gender, and socio-economic status.

So I have a treat for you. One of my favorite mommies and bloggers agreed to write a “guest blog” about her experience with her daughter. You can follow her story more closely at Living Life with a Side of Autism. Thank you, Jen!

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She sat in the hallway. Alone. In a blue, plastic chair. She was told she wasn’t welcome. She couldn’t behave like that.

She was 3. Non-verbal. At school.

This was life for my daughter before we got her Autism diagnosis. She was treated like the bad kid in class, and every day I received what amounted to a verbal lashing from her teacher. There were exasperated sighs and advice on how to better discipline. I felt like a failure. I had messed up my kid. I was reminded of that each day at 11:30am, when I trudged into the school to drag out my screaming first born. Or maybe at 11:45 after she had stopped having a tantrum in the classroom because she couldn’t put on her jacket, yet had no words to ask for help. Not that it mattered. She was still the bad kid, words or not.

A lot of children are diagnosed with Autism around 2 1/2 or 3. Katie, however, wasn’t diagnosed until the month she turned 6. We went through years of evaluations and diagnosis after diagnosis, none of which really fit. First, we were told Katie had low self esteem. Then we were told it was ADHD. Then, that she was probably bi-polar. None of this explained her extreme language delay or social deficits, however. We were told everything from she just was choosing not to speak, to she just had a strong personality. No one took all of her symptoms and put them together. We were just given a different explanation for each concern we had.

Over the years, I have moved from being the mother who just sat there and nodded her head in agreement, to the mother who does her own research and fights for her child. When Katie went from preschool to Kindergarten, things really went downhill. Fast. She was having a lot of meltdowns at school, and eventually began hitting other students. I was tired of being told my child was just a discipline problem with a speech delay. I lived with her and knew there was more to it than that. I saw her rigid behavior. I saw her inability to transition and inflexibility when it came to change. I saw her not making any friends, not knowing how to play with her toys, and becoming more and more physically aggressive at home. I saw her unable to participate in childhood activities, such as dance, and soccer, and gymnastics. She would either meltdown or be off on her own. I saw how overwhelmed she became around large groups. How going to the busy store guaranteed us a meltdown. How she had severe anxiety over the smallest thing. How she had irrational fears. No, my daughter wasn’t spinning in circle or flapping her arms, but were those the only things that defined Autism?

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While inpatient with mitochondrial disease, you’re often an enigma. Most of the health professionals have either never heard of this disease or might vaguely remember it being mentioned back in medical school. And those who have heard of it often have misconceptions (e.g. “all people with mito have some sort of mental delays/retardation” or “mito only affects infants and toddlers”). That’s why I make each and every admission a chance to educate about mitochondrial disease.

Because it’s a complex disease and involves “difficult” vocabulary, it’s easier to describe with analogies. Usually we use the “my batteries don’t work efficiently” analogy, but there are so many other ways to look at the disease. Recently, Chuck Mohan, the CEO of the United Mitochondrial Disease Foundation, made an extensive list of other ways to describe mitochondrial disease. Because it might just help one new person understand it, I’m going to share his list here:

Mitochondrial Disease is like:

  • Replacing your car battery with two Double “A” Energizers and wondering why it won’t start. But your car still looks pretty good, that is until it begins to rust from inactivity.
  • Trying to supply the electrical requirements of Los Angeles (pop. 3.7 million) with the one electrical plant in Ranchester Wyoming (pop. 701).
  • Swimming against Olympian, 8 Gold Medal winner, Michael Phelps, and you’re pool is filled with molasses.
  • That dream you have where you are trying to run away from danger but you just can’t move? Yep, that’s mitochondrial disease.
  • The way you feel after running a 50 yard dash compared to the way you feel after running a 50 yard dash with a 50 pound knapsack on your back.
  • The way you feel after working an 18 hour day or 18 days without a day off. Well, if you had a mitochondrial disease you’d probably feel that way after breakfast.
  • Buying a perfectly good Volkswagen Beetle with a 110 horsepower engine. It’s a great looking car and it runs terrific. Now take out a ring, gum up the valves, add some sugar to the gas tank and put in an old head gasket. The car still looks great but now it will only generate about 50 horsepower. That will get the Volkswagen around the flat streets of Kansas on a spring day, but now load it up with 3 of your hefty friends, or more if they’ll fit, with a trunk full of luggage and take it to the hills of Western Pennsylvania on a 90’ day. It won’t make it! But it still looks great!

For more from Chuck Mohan, go to umdfblog.com.

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After over two glorious months of freedom, I’m back at the Chateau de MGH. I was hoping it’d be a quick stay and I’d be out by now so I put off an update until I could include the good news of discharge, but that doesn’t look like it’s happening too soon. So here’s a quick recap of the last few days and the current plan for the future.

As many of you know, I struggle with chronic intestinal pseudo-obstruction (CIP or CIPO). Because of the CIPO, my intestines (both the small bowel and the colon) act as if there’s a physical block that keeps me from passing stool or gas. The result is abdominal distension, vomiting, nausea, and abdominal pain. This condition is complicated by any sort of illness or trauma. Two weeks ago, I had a GI bug that resulted in ileus (no or very diminished movement in the bowels).

Prior to going to the ER on Wednesday night, Keith and I had tried our entire home arsenal to get my bowels moving: 3 bottles of Magnesium Citrate, a GoLytely bowel prep, and 2 Fleet enemas. Nothing produced anything. And all of this is in addition to my usual maintenance treatment of 4 doses of Miralax and 1/2 a bottle of MagCitrate each day. We were at a loss as this was triggering severe nausea and pain. Because we didn’t want to cause an electrolyte imbalance with all the continued strong laxatives, we headed to the Lowell General ER. At this point, I thought it’d be a simple overnight stay at our local hospital (LGH) and it’d be resolved in the morning. Keith, on the other hand, predicted a stay through – at least – the weekend and that they’d transport me to MGH in fear of breaking me. Keith won that bet.

The nurses hooked me up to fluids (in addition to my own) and some IV Zofran and set me up for an abdominal x-ray. The x-ray didn’t look good, apparently. After telling the ER doc what was going on and that I had primary mitochondrial disease, he immediately called MGH to have them prep a bed for me. With in a few hours, I was in the ambulance with my favorite medic (yes, it’s sad that I have a favorite…) and off to MGH in Boston. They hooked me up with more Mag Citrate and a soap suds enema. Still no luck. I had officially earned myself an overnight stay in the Emergency Department Observation Unit.

Every hour in the EDOU, I took Lactulose (another powerful laxative). I had no movement and the distension and pain just increased. Around 2am, I was brought in for another x-ray. It looked worse and suggested that I had an obstruction. So they started decompressing and draining my stomach through the G-tube and I was rushed into a CT scan about an hour later. I took a two hour nap back in my bed and was awoken by the attending doc. There was no physical obstruction, but severe air accumulation throughout and packed stool in the cecum and ascending colon. I had earned myself another night, but now I was up in my usual hospital home, Phillips House. (For anyone who doesn’t know, Phillips is like the hospital suites. These private rooms have mahogany accents, a couch, a desk, a mini-fridge, and room for a guest to stay. Also, we have satellite TV and a DVD player.) The team in Phillips knows me quite well and busily got to work when I reached my room around 7pm on Friday evening.

After my GI doctors were contacted, we started another course of GoLytely, hooked up to D10, and increased the pain and nausea medications. Unfortunately, all this drama had meant that I only slept for 5 hours out of the past 55 or so. This lack of sleep set off a bad dystonic storm (the explanation of a “dystonic storm” is halfway down the page) and caused my autonomic system to go wacky until I was able to fall asleep. I slept straight through 16 glorious hours. This morning – or should I say afternoon? – was much improved on the neurological end, but just as bad for my GI system.

My hospitalist decided that it was time to consult the surgical team to see if they had any other ideas that would (hopefully) keep me from the operating room. First, they felt that I had something called “Ogilvie’s syndrome,” which is just a severe acute episode of pseudo-obstruction of the colon. Apparently, it can be pretty dangerous so we’re trying to treat it as aggressively as possible without disrupting my delicate metabolic stability. One solution they came up with isn’t too pleasant so if you feel as if you already know me well and don’t want to know me THAT well, I’d advise skipping the following paragraph. Seriously.

The first idea was to add gastrografin to the regiment. Gastrografin is a common prep for CT scans; it just happens to have the side effect of producing diarrhea. We figured that’d be welcome, even if not too likely. Additionally, a rectal tube was inserted to help decompress my colon and hopefully that will get things moving once again. The tube isn’t exactly comfortable, but I’d do anything to help. Anything.

(For those who skipped, you can start re-reading here.) The other solution, if the above doesn’t work, is a drug called Neostigmine. It’s commonly used for myasthenia gravis and is effective at stimulating contractions in the colon (read: pushing out poop!). The downside is that it causes bradyarrhythmia (significant slowing of the heart rate) so it requires me to be moved to the MICU (medical intensive care unit) to be administered so I can be very closely monitored. Because this sounds likely, we’ve decided that it’s very lucky that I usually have moderate to severe tachycardia (abnormally fast heart rate) to begin with so hopefully it won’t lower as dangerously for me.

Luckily, we have so many people who love and care about us and make the hospital a much easier place to be. Stefani and Linda (“Nana”) stopped in on Friday afternoon so that Keith could get our car inspected and pick up some supplies from home. A few of our awesome friends from Brandeis stopped by Friday night to distract us with fun games. My tubie sister, Sarah, who is also currently in patient at the Chateau, came up for a quick visit as well. Thank you to everyone who has called and sent their love and prayers our way. I don’t know if I could ever tell you how much it means to us to have so many people by our side through this ugly war.

Keith is now hooked up with his favorite free hospital meal (Gardenburger with Tapioca pudding) and True’s loving the attention from the oodles of nurses that find excuses to come in to visit with her. And me? I’m still waiting for poop.

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And now my requisite giggle that accompanies the posts filled with the icky…

This time on “You Can’t Make this Sh*t Up”:

Would you believe that my neighbor in the Lowell General Emergency Department (prior to being transferred to MGH) brought her dead husband with her in an urn? Yep. She also cried and screamed about how he used to beat her incessantly. I think this is an odd case Stockholm Syndrome being inflicted post-mortem…

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