Feeds:
Posts
Comments

Archive for the ‘Sleep’ Category

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{For the first time since my license was revoked for seizure activity}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

Read Full Post »

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.

(more…)

Read Full Post »

12 days ago our world lost a princess. 10 days ago we bid her farewell. 5 days ago she was laid to rest. And today? We still struggle to comprehend what has transpired.

Eithene was just short of her 5th birthday when she passed. We take solace in the knowledge that she is no longer in pain. No longer struggling to breathe. No longer hooked up to the myriad of tubies and machines that kept her with us. Eithene is free.

Ultimately, the pain comes not from the loss of Eithene – we are happy for her newfound peace – but from the chasm left in the hearts of those who loved her. Although it may offer little alleviation, we offer our hearts and love to mom Jessica, dad Sean, brother Gabriel, aunt Jill, and the entire Shriver-Hilliard clan. We further keep her best friend 6 ½-year-old Matthew in our hearts as he struggles with the loss of his nearly-lifetime companion.

In order to lessen their current ache, friends of the Hilliard family have taken up a collection of Visa giftcards in order to support the family during this difficult time. If you are interested in contributing, contact me at cnhertzog@gmail.com and I’ll direct you to the proper outlet. You can also make a direct PayPal donation here.

Read Full Post »

As you may have noticed, I’ve been mostly absent from the internet for over two weeks now. Following an internet snafu at our apartment that took far too long to remedy (thank you, Comcast…), I’m baaaack! And we are now the proud owners of a land-line with a Massachusetts phone number! Yahoo!

I must say that it was somewhat nice not having internet. I didn’t stress over e-mail or Facebook or even the weather. Whatever happened, happened. It’d still be there when I got the internet back. I was able to check for important e-mails and monitor bank accounts and the like by borrowing internet from friends every few days, but it was for minutes at a time and just for the essentials. It was almost as if I were back in the 1990s! And I loved it!

But now that I’m back, I’ll give you a brief update on the last 18 days, you know, in the few hours I wasn’t catching up on sleep! 😛

(more…)

Read Full Post »

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.

(more…)

Read Full Post »

I checked back in to Chateau de MGH last night. Yup, they just couldn’t keep me away!

Over the last couple days, I had been getting increasingly worse sharp pain in my upper left abdomen. I joked to Keith that my spleen and pancreas were duking it out. But I hadn’t pooped in three weeks so it could just be constipation, right? We started pushing mag citrate through the tube. 3 bottles over 30 hours, to be exact. No success.

It hurt to move, it hurt to breathe, it hurt to sneeze and cough and burp. I laid on the couch in the fetal position all day on Tuesday with the occasional moan or whimper. Keith threatened to take me to the ER on numerous occasions. I resisted. I had just escaped; there was no way I was going back so soon. I gave in to pain medication and took 4mg dilaudid PO. I didn’t even get a slight buzz… there was something wrong with that. Four hours later, I crushed another 4mg and put it through the tube. Still no relief. No wooziness even. What was wrong? Why wasn’t my body absorbing it?

(more…)

Read Full Post »

On Thursday, I was able to take one more step on this crazy mito journey: I finally got my muscle biopsy. We are so grateful that we have this out of the way now (since it’s one of the more invasive steps), but we will, unfortunately, be playing the waiting game now as the results frequently take months to come back.

Keith and I woke up at 5am on Thursday and picked up my dear friend, Stefani, to head in to Boston. I was so grateful that Stef said that she wanted to come for moral support. She and her husband, Ralph – and her parents! – are there for us every step of the way even though Stef and her two kids have mito as well. We left her home around 5:45 and were off! Even though we got there early, we barely had to wait before they took the three of us in for pre-op. I was happy that there were people there to entertain me as pre-op was a long and boring process.

(more…)

Read Full Post »

Older Posts »