A year or so ago, I began piecing together my poetry book Imagine This: From Pain to Possibility. I had just received notification that another one of my poems would be published in an anthology and I thought: why don't I make an anthology myself?
I knew I wanted three sections:
A section on the pain I had been through in the past.
A section on how I had made it through that pain (with Jesus)
A section of the most creative, joyful, inspiring (and outlandish) poems I could come up with. To show where I was then.
I created that anthology. I gathered over 60 poems, sorted them into those three sections, wrote introductions, had the book formatted, made a cover, and got it published.
But the reality is, the pain expressed in that poetry anthology didn't end when the first section ended.
You may not have read my poetry anthology so I want to summarize my medical journey really quickly here for you (if you have read my book, have lived with me through the pain, or have otherwise heard the story before, just skip over the following few paragraphs).
My medical journey began in my freshman year of high school. I was diagnosed with tendonitis in my right thumb and after it would not go away for months, I received surgery. Around the same time as I got surgery on my tendonitis, I hurt my shoulder playing air hockey. I entered into my sophomore year of high school with my hand in a cast and my shoulder in a sling.
8 days into school, I hurt my shoulder further. I was in so much pain from then on that I could often be found withing on the floor in tears. I did not attend school more than those eight days, lost all my friends, and felt entirely helpless. Particularly when the medical professionals did not know what it was. I endured test after test until finally I was diagnosed with Central Neural Sensitization Syndrome and sent to New Zealand for in-patient therapy (where the pain transferred to my hand after a fall on the first day there).
Note: Central Neural Sensitization Syndrome (CNSS) is a syndrome where the nerves cause the brain to think there is pain (something going wrong) where there is no pain (nothing is going wrong). It is very similar to Chronic Regional Pain Syndrome (CRPS) but in CRPS, patients have rashes, pain most often develops after an injury or surgery (where in CNSS it can come from nowhere) and pain is most often in the arm or leg.
After learning the strategies to cope with the pain, I was sent back home to the US where, after two pain-free months, I began to experience extreme headaches and nausea. I was consistently dehydrated and malnourished and in and out of hospitals but eventually, the doctors said they couldn't find any cause of the symptoms. It was my syndrome and I had to fight it (and fight it I did).
This is where the story in my told in my book ends. I don't tell you I was diagnosed with a heart condition (enlarged aorta) that not only could kill me, but prevents me from having biological children until I have surgery to fix it. I don't tell you I have had terrible periods (possibly caused by endometriosis) since I was 12 that, unmanaged, can leave me writhing on the floor with cramps, puking my guts out, or bent over with back pain. I tell you I manage my pain, but I don't disclose how much pain I consistently feel.
And I don't reveal the new medical problems I have faced in the recent months.
It was February or March of this year when I first went to my provider to ask for help with some nasal issues I had been facing as well as some nausea and burping I thought might be connected. My doctor sent me for a CT of my head but suggested we deal with nausea after we fixed the nasal issues.
Let me just take a moment, however, to mention how difficult it has been dealing with the doctors and insurance. The pain and nausea I face is terrible. The doctors and insurance make it worse. They make it practically impossible to get anything done in a timely manner and the insurance makes it so that the doctor has to do things exactly how the insurance wants them to (or not at all). For everything I face, I have to follow up with a hundred phone calls, a few trips into the doctor's office just to find paperwork and get things moving, and hours of waiting on hold.
In this first case, the insurance wanted a CT of the sinuses (the doctor had ordered a CT of the head). It took forever to get it changed.
Finally, the CT came back showing I had chronic sinusitis and other issues causing the chronic sinusitis. I was prescribed an antibiotic (that did nothing) and referred to the ENT (a referral that got lost twice and had to be chased down constantly until I was finally given an appointment). As I write this, I have headaches and other pain I can attribute to the nasal issues as well as blurred vision in one eye.
But, of course, that wasn't all!! My doctor still had not done anything about the nausea and burping which was now getting worse. I could not get an appointment with her (the closest one was two months out) and though I tried to change providers to find someone with closer appointments, I was told I couldn't. Finally, we went into urgent care (twice), seeking some movement in the issue. But labs came back negative, an ultrasound showed nothing, and I had no response to the medication I was prescribed. When I finally was able to see my provider, she requested a CT of my abdomen but insurance wasn't having it. They wanted more tests, this time, without me taking any pain meds for 2 weeks.
I write this three days after hitting rock bottom (when they prescribed that test). Currently, I face all my regular medical problems (asthma, enlarged aorta, central neural sensitization syndrome, tendonitis, endometriosis) as well as nasal problems (headaches, pain behind the eye, blurred vision, dizziness) and extreme nausea and excessive burping. I find it hard to eat (and have lost ten pounds over the last few weeks) and feel awkward around people (that tends to happen when you burp every few minutes).
But I don't give up.
I have a dream (or more than one really). I dream of inspiring others with my writing. I dream of impacting youth's lives whether through my writing or through youth groups I get to lead and/or be involved in. I dream of bringing God to as many people as will have Him through the means of creating a community that makes people feel welcome and accepted. I dream of publishing books that spark imagination. That ignite friendships. And that make people cry, laugh, smile, and want more. I dream of being an author. A mother. A friend. A youth leader. A dog owner. An aunt. A mentor. And so much more.
I dream of so much and I am not about to give up now.
What are you facing as you write? What challenges or obstacles make it hard for you to sit at that computer, notebook, or typewriter and get through one more chapter?
and...
What would you need to press on? What do you dream of? Write it out!! Write all your dreams out. And then be inspired to follow through. Don't stop now when you are so close! I know the challenge is hard. I face that challenge every day. I feel the pull to quit and lie around the house reading (or watching TV, sleeping, lazing with my puppy) but I don't. I get up and push on.
Maybe your dream isn't writing. Maybe you read this today and you came here because you thought this was just a book reviewing blog (wow, did I surprise you!). Maybe you are a family member, friend, or acquaintance and you have nothing to do with writing. Maybe your family member, friend, or acquaintance is the reader/writer who found this post and shared it with you. Whatever it is, I know writing is not everyone's dream. But I believe that everyone has a dream (even if it is buried deep inside you). I don't know what your dream is but today I challenge you to write it down and live it out. Don't stop because there is a massive obstacle in your way. Let that obstacle (and how God helps you overcome it) be your story!
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