Beating Cowdens – Ten Years 250K Hits, and Counting

Spoiler Alert- Rare Disease DOES change you

I watch the traffic counter on our blog click real close to 250,000. A quarter of a million hits on little excerpts of this messy road. It blows my mind actually. I may never understand why people read. But, I do know why I write.

Ten years ago someone nudged me to tell our story. I told them there was no story to tell. Except in reality there was. My undiagnosed kid, my medical mystery, had gotten her diagnosis at the age of 8. The pieces started to make sense. And, my diagnosis followed later, connecting more dots, and solving some long standing questions.

So in May of 2012 I jumped in with both feet. I typed. I hit publish. And I never looked back.

Through the years people questioned whether it was wise to tell Meghan’s story before she was old enough to tell it herself. They didn’t realize she was telling it; hosting fundraisers, speaking at events, and even being honored as a 2016 NYS Woman of Achievement. She has also always said she would do it all again if it could help this complex diagnosis make sense to one person, to one family. If it could give someone hearing “PTEN Hamartoma Tumor Syndrome” or “Cowden Syndrome” for the first time, an image of people living with it, living through it, and doing their best to make life happen, then it was worth it.

Because really, at the end of the day, what we all need is hope. Well, hope and one or two rock solid internet support groups.

When we were first diagnosed Meghan’s therapist liked to tell her not to let Cowden Syndrome “define” her. She had an active Arteriovenous Malformation creating havoc in her knee. He had her draw a smiley face on the knee to imagine the pain was gone. He didn’t last long after that.

The truth is, that between us there have been over 30 surgical procedures since 2003. The smiley face on the skin, well, it doesn’t help.

What helps is determination, faith, tenacity, prayer, and support. Because being friends with people who are always in the operating room, or in the middle of surgical recovery, or medical drama, is exhausting. It seems they are always talking about something medical. It seems they are self-absorbed.

People say “don’t let it define you” because it makes them feel better. Maybe a more appropriate sentiment is to be cognizant of how it changes you. Because if you are just starting your journey I can guarantee you one thing. It will change you.

I mean a decade changes all of us, right?

The thing is when you are in the middle of the ocean, trying to avoid the sharks, it’s so hard to focus on anything other than swimming for your life.

Everyone has their own lives though. Everyone has their own crises. Everyone has their own problems. Yours seem constant. They are hard to keep a handle on and they can drive away even those with the purest of intentions.

I used to have hobbies. I don’t really exactly remember what I used to do. But I am sure I did.

I used to go places. With people. For fun.

But, now I often survive. And most days that is plenty.

There may be time to figure out those hobbies again, or to reconnect with those people. The 8 year old is turning 18 and is off to college in a few short months. Life keeps moving.

So 10 years into this blog, what are my take aways for a new family reading?

It will change you. Check yourself.

Enduring life with a rare disease can make you:

Angry or kind

Miserable or compassionate

Self- absorbed or philanthropic

Question God, or praise Him

Isolated or connected

Overwhelmed or focused

Complacent or driven

At some times in the last decade I have seen each of the above in me. I never made the decision to bring Cowden’s Syndrome into our lives. It did change us both.

Last week Meghan mailed out Thank You notes to people along her educational journey, from her elementary school paraprofessional to her high school principal. These people changed her for the better. She, from a life of medical struggles has learned that kindness matters. We say, “No kind word is ever wasted.”

Today Meghan left a training session at a local gym to tell me her trainer has a child with vascular malformations like the one in her knee. She gave him the number of our genetecist.

We learn to use the situations we are in to push the limits of what we are able to do. We hold our faith close.

Our identity as rare disease patients is tightly interwoven into the fabric of who we are and who we continue to become. But, even within the diagnosis there are choices. We can not control what happens to us. We can only control what reaction we have.

As a dear friend once told me, “When God closes a door, praise Him in the hallway.”

We remain #beatingcowdens

6 thoughts on “Beating Cowdens – Ten Years 250K Hits, and Counting

  1. Lori this message is for meghan and you. Lori your blog is always inspirational and amazing, but i can honestly say the biggest impact for me is usually something Meghan has done or added. This go around is the same. Ive been on this journey Meghan longer than you have been alive. I can promise you that your desire to help even just one person by telling your story has surpassed what you imagine. I personally find insperation in your perspective and way you have handled everything on your journey! When this old lady is feeling down and discouraged somehow a post from your moms blog appears and kinda gives me a nudge telling me if a beautiful young women can handle this with such grace then this old lady needs to wake up and realize how much good is still around us! I may never get to meet you both in person, but I am honored to include in my cowdens family and I know I speak for many of us that you are both important parts of our cowdens family and though I wish life had connected us all for a different reason our journey would not be the same with out you both. Love from New Hampshire
    Try and stay cool!!

  2. Thank you for sharing your and Meghan’s story. I relate to so much of this post as someone who lives with Hereditary angioedema and a mast cell disorder (both rare diseases.) I have felt angry and kind, miserable and compassionate, isolated and connected, as well as overwhelmed and focused over the years. Through it all, I just keep swimming because that’s all I know to do.

  3. As always, you seem able to express my feelings in a way I never could. It’s funny what you said about the hobby, so very true. I spent roughly 25 years in the thick of this damned disease with my child, but I have to say that at least for us, all of those surgeries and procedures and tests and imaging and endless visits seems to have wiped out the vast majority of things that were threatening us. I guess if you remove enough offending organs, it helps???? Sounds so weird to say, but I know you get it. And for me, as mom…….2-3 years ago I was able to have a hobby again. To spend time with friends. To sing with 50 other women who now feel like I have 50 sisters. It’s amazing. Still more dr appts than your average person to keep things in check, but a ton less than during that 25 year storm. Very few procedures and there hasn’t been a surgery in maybe 4 years now – that’s a lifetime record around here! For us, we finally got to the light at the end of the tunnel, so I just want to say that it’s here, I’m in it, and I know that you both will be able to join us one day. Hang in there…….

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