“It honestly never occurred to me that I’d go to bed sick one night and wake up ill for the rest of my life.”
It’s easy to speak from the other side of struggle, but it’s really tough to speak from the middle of it.
Being alone in a moment of struggle and feeling all of your emotions can get really heavy, all you can do sometimes is sit in your emotions, soak them in, and bathe in your vulnerability.
Living with a chronic disease, it can be hard some days to find something to be Thankful for. Some days it feels like friends are slowly drifting away as I stayed curled up in my bed. The hardest part about living with a chronic disease is not the pain, you learn to live with the pain. It's explaining what you're going through to people who don't understand. It's taken friends and family seeing me at my worst to truly understand what is happening to me. They may not understand it, and their reactions may not be what those of us with a chronic illness expect, but we have to remember they are trying their hardest to understand that they’ve never experienced.
Monday September 27, 2010 is a day that is engraved in my brain as the day I should have died.
After two weeks of complaining about leg pain, and what I thought was arthritis pain, I was taken to the emergency room by coworkers after fainting at my desk. I had spent the Friday prior at the same ER and cleared of a suspected blood clot. The ultrasound tech was rushed and missed a massive DVT that shot to my lungs, along with 12 clots. After another ultrasound, EKG and CT scan confirmed I had multiple Pulmonary Emboli (PE). I didn't quite understand at the time what had happened, but I had cheated death.
Fatigue is my most frustrating symptom, even more so than pain! Does lethargy come on as a side effect of the medications I take? Or is it just my immune system trying really, really hard? I'm pretty positive it is the ladder. I was diagnosed at 19 and now I'm 32, that's roughly six and a half years I've spent sleeping. There are a lot of things I could have accomplished in that time.
Pain comes in all forms. The small twinge, a bit of soreness, the random pain that we live with everyday. Then there is the kind of pain you just can't ignore, a level of pain so great that it blocks out everything else, makes the rest of your world fade away until all we can think about is how much we hurt, how we manage our pain is up to us. We anesthetize, ride it out, embrace it, ignore it, and for some of us the best way to manage pain is to just push through it. That's what most of us are doing, pushing through it. But let's advocate for ourselves and find someone to help us through it so we're not alone in this.
March is National Blood Clot Awareness Month... I know I know every month there is some sort of awareness month and what good does awareness do, most people know about cancer, but with blood clots, it's a little different. I almost died from a blood clot. There are signs and symptoms everyone should know to protect themselves, because the one thing I've learned, blood clots do not discriminate.
I feel like I've lost myself along the way of this 13 year journey with Arthritis. My diagnosis has changed, my pain has changed and so has my support system. I'm definitely not the person I was when I was diagnosed. What I have learned though in these past 13 years, is what not to say to me. Even if you have the exact same condition I have, it doesn't mean that what works for you will work for me. There is no cure, that's why it's called chronic. It never fully goes away. I've compiled a list of thing you should know about someone with a chronic illness. This list is pretty specific to me, but I'm sure a lot of it applies to others.
I will always remember September 27th, 2010 like it was yesterday. It was the day I should have died.
There is heartbreak, sadness and loneliness of course, but I want to enjoy these times. I need to enjoy these times. I want to be in love. Beautiful love. Crazy fucking love. The kind of love that deserves children, that deserves to be felt and caught up in. I want that kind of love.
It's not simple to say that most days I don't recognize me. This is not what I asked for, this disease, but sometimes life just slips in through a back door and carves out a person who isn't anything like you remember. If I'm honest, I would give it all back for a chance to start over and re-write my story for the girl that I once knew.
I ask of you one thing: when you walk into my gym, be able to tell me what you love about this game. Remember it every time you walk through those doors and onto my court. There is no use playing this game with half your heart. Be all in, or get off my court.
I think we all forget that work to live, not live to work. We need to unplug and get away from our daily routines on the regular. Whether it is a quick day trip to the beach, a one-night getaway or long weekend to unwind on a beach, the mountains or in nature, we need it.
I deserve the kind of breathlessness that comes from a first kiss or facing a fear, not the kind where I get left behind. I don’t want to keep waiting—waiting for my phone to beep and hope to see your name on it; waiting for you to call and take back all the words you didn't say when we parted. I deserve to walk my path without looking back to see if you are following me in every step.
"You're always going to be someone who feels too much, who the world assumes is too resilient to quit before uncovering the very best of yourself..."
I often talk about being a spoonie and I've had people ask me what it is. It is actually something those of us with a chronic illness call The Spoon Theory.
I'm not a religious person, but when it comes to music it can transport me somewhere else. I imagine my car is a lot like my own church if you will; a sacred place where I play music ridiculously loud because it touches my soul.
After I graduated from college I moved to Seattle. I left my high school friends in my hometown and packed up and moved three hours north to Seattle with some friends from college. After 8 years away the hardest thing I've dealt with is learning how to maintain relationships long distance. Friends have changed, I have changed, they've gotten married, had kids, but deep down I know that hasn't changed how I feel about them or our relationships. Coming to terms with the fact that we are both on different paths in life was hard, really hard. I still struggle with it daily. I have to go back to the foundation of our relationship, we've simply moved on a little, made new friends, forged new relationships, but our relationship is still there just maybe a different shade.
I’ve learned that life is kind of like a party. You invite a lot of people, some leave early, some stay all night, some laugh with you, some laugh at you, and some show up late. But in the end, after the fun, there are a few who stay to help you clean up the mess. And most of the time they aren’t event the ones who made the mess. These are the people that matter the most.
