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I’m Lucky

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I do not have a rare disease. I am lucky that what hit me last year is one of the most common diseases. It may suck, but people know what it is, doctors can easily identify it and there are numerous treatments available. People with rare diseases are not so lucky. Often just getting a diagnosis is a struggle, never mind finding a treatment. That’s why awareness is so important. And that’s one of the main goals of our Genzyme Boston Marathon Team – to raise awareness of rare diseases, as well as funds to support NORD, the National Organization for Rare Disorders.

Want to help? Bid on one of the very cool items on our online auction at www.runningforrarediseases.org – it ends on Friday, April 12, at noon, so you better hurry up! Not up for shopping right now? Put on some warrior paint, like Nick and I did above. Each of our Marathon Team members are paired with members of the rare disease community. Phil is running in honor of little Wylder James who battled Niemann Pick A disease, and his parents have started the Warrior Paint Campaign:

“To show Phil our love and support for his efforts, and to remind him our Warrior Wylder James will be with him in spirit every step of the way … we have come up with a Warrior Paint Campaign!!  The goal is to receive 1,000 photos of YOU in your WARRIOR paint by next Monday!! It’s simple.  Dabble a bit of Warrior Paint (aka. face paint, or sunscreen) onto your cheeks and the cheeks of those you love and send them our way.  Send to me at shannon@wyldernation.org or post to the WN FB Page at https://www.facebook.com/Wylderjames ”

So get out your makeup or whatever and share the warrior in you!

 

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I haven’t posted in a while for several reasons: We were away; I was sick, including while we were in Florida; it’s been crazy busy at work both before I left and since I got back. But I guess the real reason is I haven’t known what to say. Or I should say, I don’t like what I’ve been feeling and hate being negative.

I’ve been having a really hard time with this anniversary. Last Thursday was one year from the day I found the first lump, and this Wednesday is the anniversary of the diagnosis. And I have just been living with this heavy dread, constantly fighting off tears, and in this just dark place. I hate to be that way. I slept till noon yesterday, and only woke up because Nick kissed my forehead to tell me he had great deli sandwiches in the living room. So I moved to the couch, had a few bites, and vegged back out. The only reason I got up at all was because we had a Running for Rare Diseases fundraiser and I try to never miss those. So I rallied for a few hours, but then went home and crashed again.

I woke up in the same funk. It’s been like living that time over and over – only this time it’s actually been worse, because I know the outcome. Last year I was out drinking and having a merry time with my cousin on St. Patrick’s Day, not thinking that the biopsy would actually come back cancer. This year I moped around the apartment. Let me tell you, the emotional scars are so much worse than the physical ones… I’m dwelling and I despise that. So I’m done. I can’t do this until Wednesday or I’ll go crazy.

So what? So what if it’s the anniversary? So what if it was a hell year? So what if my life is completely different? So what if it will never really be over? What is crying over it actually going to do? Nothing. I have to stop thinking about the past and focus on the future. Or at least start living in the present again. I may not really like everything about my current reality, but at least I’m here. I lived through it. I made it through surgery and chemo and radiation. And I’m recovering. My hair is growing back – strangers no longer see me and know I had cancer. In a few months I can have my implant surgery. Eventually I’ll feel like a normal girl again.

It could be so much worse. I am lucky. I know that. Blessed. And I am thankful, so thankful… Speaking of thankful, thanks to all who joined me in Florida last week – even those I only got to see for a few minutes! Nick, Tara, Kevin, Mike, Steve, Kelli, Hudson, Holden, Shannon, Jack, Julian, Janie, Monique, Dad, Maggie, Mom, Mark, Jake and Kacie (and congratulations on your engagement!!!)… it really was a great, relaxing time. And now I’ve done the requisite celebrating and can move on.

I’m going to do my best this week to stay focused on the future, and leave the past behind me. An anniversary is just another day. It is not happening all over again, so no need to keep reliving every moment over and over again in my head. What’s done is done and I have come a long way from then. No more mourning who I was – time to get back to getting comfortable with and accepting the new me. She’s not that bad, and hey, with a little time and attention, I can make her that much better…

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I am an optimist. I always try to see the silver lining. While I may get a bit sarcastic at times, I try to stay away from the negative. But I can’t help feeling like someone is truly testing me. And starting to wonder what did I do? Why me?

I had a great weekend – really looking forward to my trip Thursday (see last post) to celebrate finally finishing the majority of treatment, had nice lunch with Alicia, great girl’s night sleepover with Tina and my Goddaughters, fun mani/pedi with Tara. Finally getting over my cold and sore throat. Even fit in a run and got my FitbitOne up and started before settling down in front of the TV with my laptop last night. On the right track!

And then I woke up this morning. It started as a slight pain as I got out of bed. I took a few steps to the bathroom, bent a little for my toothbrush and BAM! Shooting pain across my lower back, blinding, and sudden sweats – I thought I was going to pass out. I slowly made my way to my bed because every step hurt, and gingerly lowered myself.

Flashback to 12 years ago: A few weeks after my last miscarriage, I simply bent to pick up an empty laundry basket when I had a very similar episode, only it was worse: I couldn’t straighten from that position. The slightest movement made me want to scream with pain. With that, I ended up being out of work for over a month. Lots of rest, meds and PT.

Today was not that bad. I can move some. I can lay, propped up with my laptop and be in only minimal pain. Long story short, I went to the doctor this afternoon and his hope is that it is muscular. He gave me meds, said to rest, and offered a wheelchair for Florida. He believes it will be better by the end of the trip, as long as I take it easy. And if it’s not, then I will go back and we’ll do some tests.

So I guess I’m just a bit frustrated. I feel like anything I plan, something happens. Out of the blue, no rhyme or reason. Yes, I’m still going, but I don’t think I’ll be running around like I wanted to – or, literally going for runs in the sun, as I was really looking forward to! And dancing late into the night…

It will still be wonderful. I will be with my family and friends. And it will be warm. It will be all good. And maybe with lots of prayer (please everyone?) and rest (I don’t think I’ll be leaving my apartment before heading to the airport), I will be better in time to truly make the most of at least the majority of the trip… I guess some things only time will tell…

Interesting note: As I mentioned, I started my FitbitOne yesterday and I logged 7,816 steps, even with not having it on for the first part of my day. Today, I’ve worn it all day, including to the doctor, and logged a grand total of 608 steps. Yup. Haven’t gone far. I think the FitBitOne is being put away until after vacation and when my back is better I will try again… 

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