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Archive for the ‘Change’ Category

This is far overdue. I have done such a poor job updating here (or anywhere for that matter) in the last few months. So much has happened and so much has changed – and is changing, daily – that it’s difficult for me to make sense of it all. It’s difficult to identify the meaningful moments and not get lost in the drudge of daily life. I’ve sat down so many times in the last couple of months to write an update, but the words are difficult to write and the ideas are so difficult to grasp.

As many of you know – and probably an equal number do not – one of my college degrees is in mathematics. The last few months have been scary and painful and disheartening in so many ways – and yet uplifting, encouraging, and reassuring in many other ways – that one of the only ways to make sense of this time is through numbers. Numbers don’t lie or change. Numbers have no biases or inert fear. Numbers just are.

So I figured that if the best way I could make sense of this time was through numbers and that the easiest way to share was through these numbers. So without further ado, the last few months. In numbers:

  • Since August 13, 2011, I have spent a total of 65 days inpatient. That is over 3/4 of the last three months.
  • There have been a total of 5 admissions. The longest admission was 36 days.
  • I’ve spent time on 5 different floors. Six consecutive days were spent in the MICU (Medical Intensive Care Unit).
  • I have encountered sepsis caused by 8 different bacteria and yeasts. Three times I went into severe septic shock. Twice they thought I wouldn’t make it.
  • The highest fever I reached was 108.6 degrees. It resulted in a 6-minute seizure. Other than my typical brainwave slowing (evidence of my ongoing encephalopathy), I don’t have lasting brain damage other than mild episodes of confusion. I am very lucky.
  • During the last three months, I’ve had acute failure of three different organs: my liver, my pancreas, and my heart. The lasting damage, thus far, has been relatively mild.
  • I have been placed on 9 different antibiotics at a single time. They handed Keith a page with antibiotics listed and had him cross off all that I am either allergic to or with which I have adverse reactions. They placed me on all that remained.
  • I have only been off antibiotics for 25 hours during the last three months. I then spiked a fever of 104 and was immediately placed back on antibiotics.
  • The longest amount of time I’ve been home since mid-August is 13 days. The shortest amount of time is 4 days.
  • Today, I returned to MGH – just four days after I was last discharged on November 2nd. Keith had to call 911 as my fever spiked to 104 (from 101.8) in about 40 minutes. I became unresponsive while vomiting bile and tremoring intensely. My heart rate was 180 beats/minute during this time. This is 2-3 times what it should be. I was taken to our local hospital to be stabilized and then transferred to MGH 90 minutes later. I am now stable and my fever is under control, while being monitored closely. My pancreas and liver are showing signs of acute failure. All of my liver function tests are quite elevated and my pancreatic enzymes are over 20 times higher than the upper limit of normal.
  • The recurrent sepsis (bloodstream infection) is caused by two things: (1) an accumulation of “bad” bacteria in my colon which “translocates” (spreads from my colon to bloodstream); and, (2) a severe immune deficiency affecting my T-cells (white blood cells that recognize and remember antigens in the bloodstream).
  • During one of the admissions, I had surgery to removed my gallbladder, which was inflamed and causing pain. During the surgery, I also had a tube placed directly into my small intestine. I now have two tubes on my abdomen: a gastrostomy tube (in my stomach, used for venting) and a jejunostomy tube (a tube in my small intestine, used for minimal medications and “trophic” feeds of 5 ml/hr, 4-8 hrs/day, 3-4 days/week).
  • My “battle scar” from the surgery (an open cholecystectomy and j-tube placement) is 12 cm long and consists of 22 staples. It spans from my belly button to my lower rib cage.
  • Due to my poor peripheral access, need for intravenous nutrition and medications, and rate at which I need to infuse fluids and medications, I can’t be without a central line longer than 2-3 days.Since August, I have had 10 different central lines (semi-permanent IV lines): 1 port-a-cath, 3 IJ lines, and 6 PICC lines.  The longest amount of time I was able to keep one was 15 days.  The shortest amount of time was less than 2 hours.  Port-a-caths can be permanent, PICC lines can usually last 6-12 months, and IJ lines can typically remain for up to 2-4 weeks.
  • In the last three months, I have required 5 blood transfusions due to my extremely low blood counts.  Thank you, blood donors.
  • While I was inpatient, our hometown (North Chelmsford) received 6-8 inches of snow and 80-90% of the town lost power. Our apartment lost power for over 48 hours. Luckily, we were unaffected as we were still inpatient. When I was discharged and home for 4 days, we still had 1-2 inches of snow. It made me smile.
  • My mama traveled 3000 miles to come visit me while I was in the hospital. Twice. Definitely a “Best Mama Award”-winner.
  • Other than the nights that my mom stayed with me, Keith spent every night by my side. 58 nights.
  • The strength gained from the thoughts, prayers, and love sent and felt by our family, friends, family friends, acquaintances, and even complete strangers has been immeasurable. We remain strong because you fortify our strength. Thank you.
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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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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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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…

~~~~~~~~~~~~~~~~~~~~~~

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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Author’s note: This is a journal entry I wrote the day after my 26th birthday. While much has changed since then, the core of this entry has not. Therefore, I decided to share it again, the day after my 27th birthday, because it still rings true.

Of all the people that I admire – and there are many – three repeatedly come to mind:
1. Gandhi, because he said, “be the change you wish to see in the world”;
2. Ang, our angel, who lived that change for each of her 22 years;
and
3. My mother, because she reminded me of the belief I shared with Ang and Gandhi.

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Ten years ago today, I began dating the boy who would become the man who would become my husband, my hero, my best friend.

Through all the craziness in the past ten years – whether it be medical, family-related, loss, or growing pains – there has been one constant.  Keith.  He has been firmly placed by my side through it all.  I still don’t know what other high school Junior would choose to go bravely, unfaltering, even happily along side all this, but I’m glad I found the one who would.

I had asked him why a few months ago.  Why would a teenager choose this?  He took a while to answer, but his response was the unbearable guilt he would have felt.  My first thought was guilt?!?  He stayed with me because he would have felt guilty if he hadn’t?  No, he explained.  I would have felt guilt for the rest of my life for leaving someone I loved to go through it all alone.

Keith is a child in a grown man’s body.  He likes playing video games, wearing screen tee’s and jeans, and eating Fruity Pebbles for breakfast, lunch, and dinner.  He can’t balance the books, doesn’t know how to use a calender, and has to play 20 Questions just to send a check off.  And yet, he possesses more maturity than almost any other man I know.  He was unhesitatingly there when I spent months bed-bound and home-schooled as a teenager.  He didn’t have a second thought about taking a girl in a wheelchair to Senior Prom.  He only worried about my experience for nearly 5 years of a long-distance relationship while we were in undergrad.  He calmly and compassionately cared for me when I was having seizures daily, episodes that were messy and scary.  And he confidently held my hand as we listened to the doctor’s tell us that I had a progressive and incurable neuromuscular disease.  He’s always there.

I found out recently that not everyone considers his or her spouse as a “best friend.” This shocked me. It makes me incredibly sad. Sure, there’s still love and loyalty that keep those relationships together (as far as I know), but I can’t imagine not having my best friend there with me through it all. I don’t know whether we could have made it through those difficult times without our friendship. Love and loyalty can only get you so far; being able to enjoy and share our time together has made all the difference. We can play board games one-on-one until the pieces wear out. We can goof and giggle through 10-hour road trips. We can talk until 3 am. Or just sit and be. Silently. It doesn’t matter what we do or where we are as long as we’re together.

Weeks before we married nearly 3 years ago, a friend joked that we had already done the whole “for better or for worse, for richer or for poorer, in sickness and in health” deal. And we had. Well, we had done the “for poorer” and “in sickness” parts, at least. So I wonder, would things even out and be for worse if we had health and riches? Because right now, things are so good and so strong between us that I can’t imagine a “better.” I honestly can’t imagine being happier. I can’t imagine a life without him.

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[This is the fourth and final part of my No Longer Starving series, a belated editorial for Feeding Tube Awareness Week. As I noted before, life got in the way during the actual awareness week so I’m raising awareness on my own schedule.]

Phew! Ladies and gentlemen, we’ve made it through the world of tubies! I gave you an update on my own situation, a small glossary of terms commonly used in the tubie world, and an overview on types of tubies (and the corresponding who, what, where, when, and why of each). And now I’m to the most important part: the impact. The “so what?” So how is life with a tubie different? Well, everything is different, but nothing has really changed. Confusing? Obviously, as a person, I haven’t changed, but how I interact with the world has. Some days that change seems insurmountable, but on other days, it doesn’t make a dent. Most days, however, it’s somewhere in between.

I know I’m not the only one who feels like this. And maybe it changes, becomes less (or possibly more?) difficult as the years pass. I don’t know. I’m not there yet. But I do know that the good that comes with it (at least in my case) far outweighs the bad.

Because this series has been full of my words (and I know listening to the same person drone on can get old), I wanted to share the words of my friends who have been so helpful with this process. I asked them what they want people to know about feeding tubes and the people who have them.  Here are some of the responses:

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