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Archive for the ‘Sick and Tired’ Category

An invincible summer

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 on 8 September 2011| 6 Comments »

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{For the first time since my license was revoked for seizure activity}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 and Back Again

Posted in At the Doctor's, Boston, Hospital life, Immune Deficiency, Life Line, mito, Sick and Tired, Sleep, The storm on 21 August 2011| 3 Comments »

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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The Other Side

Posted in At the Doctor's, Hospital life, Life Line, mito, Raising Awareness, Sick and Tired, The storm, Tummy troubles on 15 August 2011| 7 Comments »

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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