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Archive for the ‘Dogs’ Category

Note: I wrote this blog nearly a month ago and am just now getting around to posting it because a good friend has been asking for it for ages and I thought she could use a small pick-me-up. This one’s for you, Liz…

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Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

This winter has been one full of challenges, stresses, adaptation, loss, learning, sickness, and love. Yes, love. Without it, I’m not sure I would’ve come out as relatively unscathed on this end.

This winter, New England received more snow than it had in years. It was blizzard after blizzard. It was cold and unrelenting. Even worse, my body appeared to be taking lessons.

One thing that I’ve always prided myself on is being able to rise from just about anything and everything stronger and smiling. After December, I was petering on the edge, still smiling, but straining and struggling not to lose myself. But after the second month of medical hell, I wasn’t sure that I wasn’t going to rise.

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In the last month and a half, I have spent 40 days and 40 nights in the confines of Mass General. While I’m not yet home from this ordeal, I can confidently say that a plan is in way if they decide not to discharge me today. (The paperwork has already been started, but you never quite know…) I will be honest with all of you and say that my spirit (which I once though to be unbreakable) was starting to crack. But my dear sister Stefani would not let that happen. She and Beast devised a plan to break me out of this brig if my medical team was still holding me hostage.

Note: The captions are Stefani’s original captions.

My sidekick - waiting to rescue his princess (True)

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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 have a dog. Her name is True. We call her “Trooper,” “Boo boo,” “Truby,” and “True Blue”. Because she is. She’s a True-blue friend. She is a service dog and helps me with everyday tasks.

Yesterday was True’s 6th birthday. That makes her middle-aged in dog years. We are so blessed to have True in our lives so we celebrate doggie birthdays just like we do human birthdays.

For this birthday, I made cupcakes on Saturday night. They were dairy-free, egg-free, chocolate-free, and baked with agave nectar in place of processed sugar (because processed sugar is bad for doggie tummies). And because of this, they were doggie-edible.

We got up early Sunday morning to run errands (something True loves). First on our list was Petsmart. Petsmart is one of the few places we go that we let True be “just a dog.” We leave her service dog jacket in the car and take off her gentle leader. She’s allowed to sniff and greet other dogs and get pets and cookies from people she meets. She loves it. We picked up some new nail clippers for her (our old ones got lost in the move) and some specialty frosted cookies and bones for her birthday. She was in heaven.

Next, we were off to Costco. [For my pharmaceutical-dependent friends out there, Costco Pharmacy ROCKS. They charge at-cost so if your insurance doesn’t completely cover something (for me, Zofran), it’s not that expensive!] Costco was a short trip aimed at picking up a few staples in our home.

Then we were off to Beast’s house. Beast is True’s boyfriend. He’s a 10-month-old, yellow lab service dog. They are best friends:

Beast and True, ready for work


They are hilarious together. They chew on opposite sides of the same bone, swim together, cuddle, and work together. Beast even brings True toys and forces them in her mouth. They are certainly good pals. So was there any better way to celebrate her birthday than by letting her celebrate with her favorite four-legged pal?

After letting True and Beast enjoy the evening together, we headed home so that True could enjoy her allergen-free, puppy-safe cupcakes.

Thank you, True, for being there for me when I need you! Here’s to many more happy birthdays in the future!

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Today, I had my pre-op consult with the surgical team for my muscle biopsy. It seems like such an ordeal for such a small operation. I found out that the procedure is only done with general anesthesia so even after begging for local it was a no-go. But we were able to set a date for the soonest available day: September 16th. We’re looking forward to getting some more firm answers at this point. Wish us luck!

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The last few days since my last post have been action-packed! Today, Keith and I went into Boston for my gastric emptying study, which is a precursor to the Antro-duodenal Motility test I’ll be having at the end of October. We confirmed what we already knew from endoscopy: my gastric emptying sucks. I arrived at 11am for the study, having fasted for about 10 hours. I was exhausted and just wanted to sleep – but more on the reason why below. I was sat down with 2 eggs scrambled with some yummy radioactivity goodness, a glass of water, and some toast. I warned the administrator I wasn’t very good with solid foods and then began choking them down. I asked if I could take some zofran after nearly losing the eggs on the floor, but was told “no.” I finished the eggs – barely – with 2 sips of water and no toast. I think the test ruined scrambled eggs for me permanently because I will forever associate them with a metallic taste.

I was then told that for the first hour I had to remain still on my back while a scanner took pictures every minute. If my stomach had cleared 50% of the food after 60 minutes, I could leave. I was told that 60 minutes is the average for a “normal” person. We laughed. He continued to say that after that I could sit up but we’d have to take more pictures every 30 minutes until I reached 50%. We were there 3 hours – usually, the test ends by 2 – and I still hadn’t reached 50%. Because the reading was exactly the same for the last 90 minutes, he said I could go as he didn’t see much happening soon after I kept steady at 44% emptied. I immediately took a zofran and drank some water as I couldn’t have anything for the last 3 hours. And that’s how I finished the 2nd of my 5 medical appointments this month.

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The summer of 2010 will officially be heralded as the Summer of New Beginnings!

Some of the other beginnings’ ends:

  • Keith and I moved from our city apartment overlooking Fenway.  It was incredibly difficult to part with, but we’re on to new adventures.
  • I finished my last term (for now) at Harvard School of Public Health and am officially on leave.  The decision was difficult to make, but – in the end – should be better for my health and emotional well-being.
  • We said farewell to our beloved Tilly.  But I’ll say it again: It’s not really an end; rather, we’ve come full circle.

And the new beginnings:

  • We moved into a nice little place in Chelmsford, MA – just 20 miles north of the city. We’re rather excited as we love our new town and neighbors.  If you want the new address, please e-mail or call!
  • I’ve begun tutoring some amazing children.  Each has different needs and I love being challenged to find the best way to reach them.
  • I’ve taken up my post as treasurer of the New England Chapter of the United Mitochondrial Disease Foundation.  I love it and am incredibly passionate about my job.
  • A new blog!  The hope is to keep it somewhat updated so my friends and family can hear directly from me how we’re doing so no one has to worry.  I hope that – through reading this – you can better understand what we deal with and how we deal with it on a daily basis – with perseverance, laughter, and hope.

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Full Circle

In the autumn of 1995, when I was just 11, Tilly came to me.  While I don’t believe in fate, I think she must have been chosen to be with me, specially picked out and perfect.  She couldn’t be sold – she was blind in one eye – and I couldn’t pay.  She was bred by my grandmother who owns a kennel of champions, but Tilly couldn’t be shown, and I didn’t want to show her.  Tilly and I wanted the same thing: someone to love.

I spent the first month of our time together sleeping on the floor with one hand in her dog crate.  Why, you ask?  Because crate training was supposed to be a positive and simple thing for a puppy – especially one that wasn’t yet housebroken.  But more-so because every single time I got into bed and turned out the light, Tilly would cry.  Not a low whining cry, but one that reverberated against the bedroom walls and threatened to – or actually did – wake my parents and brother.  The only way I could hush the darn thing (yes, I actually did think of her like that at 2 am when I couldn’t get any sleep) was to sleep on the carpet with one hand through the crack in the crate’s door.

Our relationship could only be described as a perfect mutual symbiosis.  She needed me like I needed her, just in different ways.  I don’t quite know who raised whom, but I like to think we both did a pretty darn good job.  She followed me everywhere I went, became anxious when I left her sight, and patiently listened to me express my teenage angst.  I fed her, carried her home when she was an exhausted and rotund pup, and cared for her around the clock when she got old.  But to transcribe each moment that rendered our time so special would take longer than her lifetime and mine, combined.  I will tell you this: she knew me like no other.  When I became ill in high school, she was my guardian, nurse, and friend.  Our early connection is what made her the attentive and wonderful service dog that she would become.

This morning, I woke after just 3 hours of sleep with the knowledge that my beloved was about to have a seizure.  I’ll remind you that this is the dog that has instinctively alerted me to my own oncoming seizures, fire and allergens, and fainting spells.  Now, I had the instinctive knowledge as to when her seizures were about to begin.  Keith teased me about this instinct (and the lack of sleep that it brought), but I think he was just jealous he couldn’t help his little girl.  This morning brought a minor seizure which was her way of saying, “I’m awake!  What’s for breakfast?”

We knew the end was near when, two days prior, she stopped walking and restricted herself to people food (a demand that we eagerly obliged since we’d rather her eat than starve).  This morning’s breakfast was a bagel with cream cheese, a chicken strip, and a handful of salt and vinegar potato chips.  I then settled myself on the couch while Keith readied himself for a day in Waltham.  After Keith left, however, Tilly began crying to the point that I could not return to my slumber.  So I did what my 11-year-old self did: I curled up on the floor with my pillows and a blanket and rested my hand on my baby girl.  I told her everything was okay and that I loved her.  Minutes later, she began seizing.  For the five minutes that I held her head in my lap, I repeated my previous words.  My presence enabled her to rest for the final time the same way that I  aided her sleep in our youth.

Our life together has come full circle.  Which is an amazing thing, you see, because a circle does not start and does not stop.  A circle, like our friendship, does not end.

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