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Archive for the ‘Coming together’ Category

Today is Purple Day. And what is that, you may ask? Purple day is in support of Epilepsy Awareness.

Wear Purple for Epilepsy Awareness!

And in honor of this day, I have a special treat.

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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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[This is Part 3 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.]

Today’s blog is brought to you by the Letter “W.” Yep, we’re going to talk about the Who, What, Where, When, and ever-important Why involved in the use feeding tubes. There are tons of types tubes and even more reasons why an individual might get one. So I’m going to give you and general overview of the primary classes of tubes. I know everyone who has a tube, or “tubie,” has gotten those looks and questions. Truth is: most people don’t see tubes everyday; they may be curious, weirded out, or even afraid of them. When I first got my GJ tube, my nephew – the sweetest, most empathetic kid you’ll meet – was so incredibly gentle with me. I think he thought he was going to break me by giving me a hug. It took him a while to warm up to it and we talked a ton about it, but I’ve got those bear hugs back.

Tubes aren’t something to be scared of. Tubes don’t necessarily equate to loss of freedom and worsening of disease. In fact, feeding tubes prevent the progression of disease! And I have more freedom with my feeds and infusions than I have had in years. There are very few people that I know with tubies who don’t feel the same.

So let’s get rid of all the stigmas attached to tubes and take a journey with some of my incredible friends who just happen to also have tubes…

I want to issue the same warning I did yesterday: there are some pictures in this post of medical interventions; if this makes you uncomfortable, I advise you not to read on! 🙂

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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! 😛

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People are often unreasonable, illogical and self centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you’ve got anyway.
You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.
-Mother Theresa

Sometimes I can find no words for what’s going on in the world around me. For what’s happening to those I love. For the pain and hurt I see. My solution? I steal words.

Mother Theresa is one of my favorite sources. She finds the words that my heart wants to say but is too distraught, too lost to find.

When I am hurt or see a loved one in pain, my first instinct is to pull it all back, to retreat. I often describe myself as being as vulnerable as a sea cucumber. I’m sensitive and out in the open. My only defense is looking pathetic and harmless enough that no one would want to harm me. (I mean, seriously, have you ever seen a sea cucumber?) But that’s not the answer.

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It looks like Christmas came to my room and spewed red and green vomit everywhere. And I love it!

I’ll admit it: I was starting to lose my spirit a little after I’d been in two weeks, without an end in sight, and the projection of spending Christmas at MGH. I’d been poked and prodded every which way. Despite what my medical team was doing, my blood work was abnormal. And my first glimpse at freedom (the first attempt at the GJ tube procedure) failed. Fortunately, I’ve surrounded myself with people who make it nearly impossible to lose one’s spirit!

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