Still Miles to Go

An invincible summer

8 September 2011 by stillmilestogo

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{For the first time since my license was revoked for seizure activity}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

Posted in At the Doctor's, Birthdays, Blessings, Boston, Change, Chronically cool, Coming together, Family, Friends, Home sweet home, Hospital life, Immune Deficiency, Invincible Summer, Kiddos, Life Line, Love and loss, mito, On the road, Party Time, Sick and Tired, Sleep, Smiles, Stealing words, Sunshine, Symposium, The Cans, The storm, Tutoring, umdf, Vampires | 6 Comments »

Flashback Friday: Digestive Tract Paralysis

26 August 2011 by stillmilestogo

One year ago, I posted on Digestive Tract Paralysis (DTP) for the G-PACT-sponsored DTP Awareness Week. As a treat, I’m reposting with the permission of my featured guest stars.

Unfortunately for me, a lot has changed in the last twelve months. Due to my worsening DTP, I became severely malnourished and the damage done to my GI system appears irreversible. I had a GJ-tube inserted in December 2012 which has proven unsuccessful in treating my DTP. The medications (that you’ll read about below) that once worked to “control” my dysmotility have since failed. My motility specialist says I am likely to be TPN-dependent for the remainder of my life. Furthermore, most of my medication has been transferred to intravenous (IV) form as I have severe malabsorption to anything given enterally (through the GI tract). But yet, this has given me such an improved quality of life. I have more energy and less pain. My days aren’t spent worrying about getting in enough calories to sustain life. And I can still do almost everything I could do before our various interventions. Actually, I can probably do more.

So, without further ado, I would open a window into life with Digestive Tract Paralysis. Thanks for reading!

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August 22-29 is Digestive Tract Paralysis (DTP) Awareness Week.

Because I live with DTP, I thought I’d share a little about DTP, my story, and the stories of some friends.

I have what’s called “gastroparesis.” That’s gastro– (meaning stomach) and –paresis (meaning paralysis). I also have intestinal dysmotility which has resulted in chronic intestinal psuedo-obstruction (CIP or CIPO). And that’s chronic (meaning long-term), intestinal (meaning relating to the small intestines and colon), pseudo- (meaning false), and obstruction (a blockage). Both issues are common with many types of mito.

Posted in Flashback, Friends, Guest stars, Kiddos, Life Line, mito, Raising Awareness, Sharing is caring, Tummy troubles | Leave a Comment »

There and Back Again

21 August 2011 by stillmilestogo

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.