Everything Hurts

experiences

Cross Country with Chronic Pain

blog, chronic pain, holiday, self help, travelAmanda VinciComment
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Surprising yourself with your ability to do what you thought you couldn't is a great feeling. During the last week of December and first week of January, I surprised myself with that feeling every day. My boyfriend and I loaded up our car and drove cross country from New York City to Cupertino California. We made this 60 hour trip over a period of nine days. The fact that I sat through, and even drove a portion of 60 hours still blows my mind — I usually have increased pain after being in the car only a few hours.

So how did I do it? It's still a little bit of a mystery to me. I certainly prepared myself for the trip both mentally and physically, but I also learned a lot about my tolerance and my ability along the way. Here are my three keys 🔑🔑🔑 for surviving a spoonie road trip.

 
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🔑 I knew from the beginning that planning would be an essential part of getting us across the country. And not just planning which awesome sights to see, but planning hour by hour when was driving time, when was resting time, eating time... etc. I decided that the trip should begin with some of the longest driving days, and that the time spent in the car would gradually get shorter as the days went on. I knew I would have more pain and less tolerance for staying seated the further we got into the trip. 

The Joshua Tree House Airbnb, Joshua Tree CA

The Joshua Tree House Airbnb, Joshua Tree CA

 
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🔑 My greatest fear in life is being out there in the world and not having any of my pain relieving products with me. I'm not lying, that's the stuff of nightmares. If it was up to me, I would have packed a whole extra suitcase filled with everything that brings me comfort and joy, but alas, that is frowned upon by the TSA (I was flying home). So I sat down, had a heart to heart with my products, and picked the ones I knew would be the most helpful. When leaving home, even if it's for a day, it's so important to remember all your medications, even if they're not daily meds. You never know what you might end up needing, and as a former girl scout, I know it's always best to be prepared.

One of my favorite pain relieving lotions, along for the ride. Post about which it is, coming soon!

One of my favorite pain relieving lotions, along for the ride. Post about which it is, coming soon!

 
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🔑 While you may be listening to your killer road trip playlist, one must never forget to stop and listen to their body. Throughout the long car rides I would take time to focus on what it was that I was feeling, what parts were hurting, and how I would describe the pain. I often dismiss my pain as the same terrible pains without actually dedicating my attention to them. All the extra time I had now allowed me to focus on me. On my body. Doing that allowed me to know when I should get out of the car and stretch, or use a certain product, or even go to the bathroom. I find that the most effective way of treating my pain is to listen to my pain. It's saying something, so hear it — even if you may want to reply with "EFFFF YOUUU".

Marveling the monstrous cacti in Saguaro National Park, Tucson AZ

Marveling the monstrous cacti in Saguaro National Park, Tucson AZ

The amazing part of this trip was that it wasn't about my pain. It was about feeling good, and about time spent together, and about discovering what lies ahead. It's easier to forget your daily struggle when you leave part of it behind. Over two weeks of no work and responsibility did my mind and body a lot of good, even if I was pushing my body to the limit. I felt like I was able to free myself from myself. Letting go of my preconceived notions of what it meant to be a sick girl, and who I really am as a person – how I am much more than my illness.

We stayed in some beautiful places (and one not-so beautiful one), ate delicious food (although not always the healthiest choices), I even got a deep tissue massage (though still not as good as my PT's) and had great conversations (even a handful about my pain).

The little car that could — our VW GTI. Its heated seats got me through the back pain.

The little car that could — our VW GTI. Its heated seats got me through the back pain.

At the end, the trip was not only about unbridled adventure but signaled a change in my life. My boyfriend of almost six years would be staying in Cupertino for work until July. I knew the change wouldn't be easy, but it was necessary. I'm extremely proud of him, and also proud of myself — I've never lived alone, and that was mostly because of my chronic pain. These next six months will be new for me, and they may be scary — but I am choosing to use this time to improve my health and learn how to be independent in caring for my pain. 

Giant rocks of Joshua Tree National Park, CA

Giant rocks of Joshua Tree National Park, CA

When I think about the literal road I've traveled, I can't help but smile. This was something I never thought possible of myself, and there I was, doing it all. And I'll do it all again in July, when we pass through the northern states of America to go back home. During the trip we kept talking about how one hour drives will no longer feel like an eternity now that we've done ten hour trips. That also applies to my condition. If I could make it across the entire US, I can surely be alright if the subway is delayed when I'm in extra pain.

"Prada Marfa" permanent art installation — Marfa, Texas

"Prada Marfa" permanent art installation — Marfa, Texas

The trip had given me a new perspective on what I was able to do.
I knew I could now do what I thought I can't.

 

 

From EH to ER

chronic pain, blog, doctorAmanda VinciComment
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When is the right time for a trip to the ER? For every person, every condition, and every circumstance, the answer is different. For me, it's when the pain becomes greater than myself. When it takes over not only my body, but my mind... when what's happening to me doesn't make sense.

This happened a few days ago. I suffered in my bed for hours, gasping from pain. A new pain – pain that was coming from my lower left abdomen and radiating to my back and hips. The next day I attempted to go to work, but I never felt a pain quite like this – I had no idea what was happening, but I did know it was time to go to the ER.

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For those of us with an invisible illness, an unusual set of fears exist when visiting the ER. The doctors, nurses and PA's don't know you – they don't know your medical history, years of struggle and rotating list of prescriptions. You have to tell them all of this, rattle it off like a well versed poem, count on your fingers the conditions you have, making sure not to forget a past surgery or allergic reaction. And you have to do this while you're in an enormous amount of pain.

Then there's the stigma. The fear of an eye roll, the brushing off of your complaint because of your preexisting conditions. Because your illness is not visible on the surface, or in a blood test, or even on a CT scan. 

And although you're surrounded by medical professionals, and beeping machines, and humming lights, you're ultimately responsible for your own care. Only you know your own body and your own pain, and it's all on you to be your own advocate.

So why even bother to go to the emergency room for chronic pain? The best, and maybe only answer is to receive pain management medication that you'd be unable to elsewhere. And if your pain is unusual, it's a one-stop-shop for every possible test and scan you'll need to let you know what may be happening. The downside of course, is waiting for hours upon hours in a hospital bed. under super bright lights, surrounded by a cacophony of voices and sounds.

As for me, I never really got a clear answer to what my new pain was. Could be a small ovarian cyst that showed up on a sonogram, or could be the cough caused by a never-ending sinus infection lead to me straining the muscles in my abdomen. But hey – those pain meds sure were nice.