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Waiting…
I am waiting. Still. I am tired. I am angry. I purposefully picked the best hospitals. I searched out the best doctors. My goal was to avoid useless waiting. Instead I spend days at a time looking at...
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Patience and Wisdom
I am patient – sometimes. I am also wise – sometimes. The trick really might be meshing the two. That’s where I sometimes have some trouble. I got a call this morning from Dr. S. The biopsy is...
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No place like home
We are home. The procedure is finished. A scheduled 1 PM start turned into 2:45 on an empty belly. But, it went fine. The doctor got what she needed. Now its up to the pathologist. So, we wait. We...
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One step at a time
Tonight, we celebrate the small victories because we are fully aware how important the little things are. I get to keep my spleen for 6 more months. (And maybe even longer!) The surgeon said that the...
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“The Six Month Leash”
The new normal… that is normal AFTER the Cowden’s Syndrome diagnosis, revolves around living life 6 months at a time. On Wednesday I got word that I can keep my spleen for at least 6 more months. On...
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Moving at our OWN pace
Two weeks ago today we left for the last day of school. Seems like an eternity, although not a restful one. Today was the first day I woke up with nowhere to be, and nothing to do. Our first...
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My Wish
What would I do? I have been quiet this week. That in and of itself is unlike me. I am tired – well bordering on downright wiped out. There are a few more weeks of summer to go, and aside from a well...
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Happy 2nd “Boob Day!”
My math mind is full of numbers. It is full of lots of things actually, and sometimes I wish I could get a few of them out… quite a few. I am pretty good – although not perfect- with dates. Today...
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Sometimes I forget
Sometimes I forget that Cowden’s Syndrome is not just Meghan’s – it’s mine. If I am to be precise, it is Meghan’s BECAUSE of me. And I say that not out of guilt, but more as a point of fact. And I...
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It’s not a sprint… It’s a marathon
I’m not a runner. At least not in the traditional way my sisters run. I don’t really run unless I am being chased. Tried it for a while but the knees and the back weren’t interested. So the only...
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A REAL Love Story
I’m not one for Valentine’s Day. Never was. It didn’t matter to me if I was dating or single, it just never made sense. The “Hallmark Holiday” seemed determined to bleed money out of people who...
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You Might Have Cowden’s Syndrome if…
You might have Cowden’s Syndrome (or insert your chronic/rare illness here) if… I spent some time alone last night. That sounded a great deal nicer than it actually was. There was no manicure, no spa,...
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Rare Disease Day 2018
I took today off from work. Sadly, it was not to enjoy the almost 60 degree February day. Today was doctor day. And as I traveled two hours for the 17 mile trip into Manhattan this morning, I had...
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Triage- A Way of Life
Triage. The word hangs with me like the memories of countless Emergency Room visits. Triage. Take care of the most serious first. It’s the reason we might wait hours for stitches, and barely a moment...
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When you reach the end of your rope…
There is no other choice really. We must hang on. We must always hang on. So often this is easier said than done. Last weekend I stayed up all night Saturday digging out from under a pile of...
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It’s This Day to Day Living…
And that might be an accurate description of my current assessment of living with Cowden’s Syndrome. It’s so hard to put into words. Those who don’t understand are likely to think I’m insane. When...
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The Carousel
Life is very much like a carousel… you must hold on tightly. It will not stop until it is over… I always heard about the body changing every seven years. I never gave it much thought.A quick Google...
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Difficult To Work With
I am so tired of fighting. All the time. My Grandfather told me many years ago that I was “difficult to work with.” He said it with love. I don’t remember the exact context. I do remember it was...
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