Hello, everyone! It has been a chaotic season of life for obvious reasons*, and I’m here to provide an update on my health journey. It’s been good, bad, and ugly. Let’s begin in chronological order.

*for context, I am diagnosed with syringomyelia, a rare and incurable neurological condition characterized by fluid-filled cysts in the spinal cord

Beginning Counseling

To be transparent, my mental health, which had already been questionable since my diagnosis (let’s be real, does anyone know how to cope with something like this on their own?), really began to sink after my appointment at the Jacksonville Mayo Clinic. I had put so much faith and hope into seeing the experts—the best of the best—the ones who would finally help me–only to be disappointed and dismissed. Following the shock of it all, I began to constantly fear for the unknowns and the future. I found myself asking, “What if?” and spiraling into worst-case scenarios. This appointment was my breaking point, and I realized I could no longer bear the weight of it; I needed to seek counseling.

Having never attended therapy before, I wasn’t sure what exactly to expect. I’d hoped that I’d connect well with my clinician and learn ways to cope. I felt hopeful that I would feel more control in my life. I began mental health counseling in September and found a wonderful clinician who has provided a hypothetical map to help me navigate the feelings and tribulations of liviing with a chronic condition.

I’ve attended weekly since, and have already noticed significant positive changes in my mental health. My therapist has taught me about cognitive distortions and how to challenge them, the importance of structure in my schedule and how to find purpose in daily tasks. She has even assissted me in seeking answers and exploring options for medical care. I feel more supported and notice the positive effects on my close family and friends as I no longer seek unanswerable answers from them.

Looking back, I wish I had started therapy sooner, ideally right after receiving my diagnosis. I’m perplexed that doctors don’t automatically provide referrals for patients with chronic conditions. I highly recommend it for anyone facing similar struggles. Again, does anyone really know how to cope with something like this on their own?

Implementing an Anti-Inflammatory Diet

Over the last 7 months since my chronic pain began, I’ve noticed that my pain tends to worsen with inflammation. Though no doctor has been able to confirm or deny that it makes a difference in management of a chronic condition (eyeroll), I’ve begun implementing the anti-inflammatory diet, targeted to reduce inflammation in my body.

It emphasizes whole, unprocessed foods while minimizing the intake of those that can trigger inflammation. Key components typically include:

• Fruits and Vegetables: Rich in antioxidants, vitamins, and minerals, they help combat oxidative stress and reduce inflammation. Leafy greens, berries, and cruciferous vegetables are particularly beneficial.
• Healthy Fats: Sources like olive oil, avocados, and nuts provide monounsaturated fats and omega-3 fatty acids, which have anti-inflammatory properties. Fatty fish like salmon and sardines are excellent choices.
• Whole Grains: Foods like brown rice, quinoa, and oats are high in fiber, which can help support gut health and reduce inflammation.
• Legumes: Beans, lentils, and chickpeas are not only nutritious but also contribute to lower inflammation levels.
• Herbs and Spices: Turmeric, ginger, garlic, and cinnamon have strong anti-inflammatory properties and can be easily incorporated into meals.

To maximize the anti-inflammatory effects, I’ve worked to avoid/reduce consumption of sugary drinks and high-fructose corn syrup, refined carbs, trans fats, and processed foods.

The simple changes I make include:

• Incorporating fish, usually salmon, into my meal plan at least once a week.
• Drinking a homemade anti-inflammatory smoothie with ingredients to reduce inflammation (see details here)
• Ensuring adequate hydration
• Eating more fruits and vegetables daily
• MINDFULNESS about what I put in my body is key

Now I’m not perfect by any means, but from the small diet changes I’ve implemented so far, I’ve noticed less pain with reduced inflammation, as well as lower blood pressure. I believe consistency is key, and recommend this diet to anyone–especially fellow chronic pain warriors.

Increasing Activity Levels

Despite my limitations, I’ve realized the importance of staying as active as I can while implementing modifications/lifestyle changes to optimize my health. I was further motivated as my blood pressure had been significantly high and I learned the mental health benefits of cardio.

As a result, I’ve increased my activity levels by engaging in yoga, barre, walking outdoors/hikes with my dog Juneau, and using the elliptical at the gym. Since, I’ve noticed decreasing blood pressure, a brighter mood, a clearer mind, and increased confidence from my sense of achievement.

I’ve seen and heard that exercise is the most underutilized treatment for anxiety and depression. I believe that with the physical benefits come the mental health benefits as well. I will quickly emphasize the importance of giving yourself grace and listen to your body, especially if you’re dealing with a chronic condition. I still have days in which my body don’t allow me to move much, but when I can, I make the effort.

Continued Dismissal from Doctors

Unfortunately, I continue to face dismissal and challenges with my medical doctors. I underwent a 3-month follow-up with all MRI imaging again and attended an appointment with my neurosurgeon for results. He explained that my syrinxes (fluid-filled cysts in the spinal cord) are stable but indicated that there was a small mass in my brain. I kid you not, this is essentially how it went (or at least how I perceived it):

Neurosurgeon: “Well, you have a small mass in the brain. We saw it last time and had no concerns but it showed in the imaging again. We are a bit more concerned. You could experience brain bleed or seizure–keep an eye out for headaches. We will follow-up in 6 months. Bye!”

The following week, I attended a neurology appointment in which I was hoping to receive more clarity and relief. After all, I understand that neurosurgeons aren’t necessarily known for their ‘people skills.’ Unfortunately, I only saw the neurologist’s assistant, who said the neurologist would call with his opinion on my latest images. Three weeks later, I receive a call from a nurse – “He said everything looks stable. Have a good day!”

I’m beyond frustrated that I wasn’t even deemed important enough to see the neurologist, especially after his assurances that he would research my condition to provide support and advocacy.

I am still waiting for a medical provider to provide specific examples of diet or lifestyle changes, therapies, or other strategies to relieve pain. In conclusion, all that western medicine continues to provide me are drugs, and nothing.

Research on Regulating the Nervous System

I spent a day deep-diving into my own clinical research (thank you, PubMed, and graduate school for teaching me how to study research articles), and found information that relates to the significance of regulating the nervous system in the body’s healing of itself.

I will dedicate an article to this one in the near future as I’m just beginning to implement and track my progress.

Next Steps: Exploring Holistic Care

At this point, I’ve exhausted myself trying to find answers about managing my chronic pain and condition through traditional medical avenues. I am extremely dissatisfied with the conventional methods and am broadening my horizons by exploring holistic care.

Next month, I will undergo a comprehensive evaluation with a holistic care practice. I hope to learn something new about how I can take control of my health and pain, and ultimately, reclaim my well-being.

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In conclusion, this journey has been filled with ups and downs, but I’m finding hope and strength in counseling and lifestyle changes. As I continue to navigate my health, I’m committed to exploring new avenues for healing and sharing my experiences with all of you. Thank you for being part of this journey with me!

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