Battle Weary
To tell you the truth, I found my second month at Spero to be extremely difficult. I felt like Sisyphus pushing an immense boulder up the side of a mountain. But instead of being punished for cheating death twice, I was beaten down by a chronic pain disorder that I did not want or ask for, and I was pushing while suffering from shocking, burning pain.
I began my fifth week with a bacterial infection I caught due to an ingrown toenail (which plague me often)… that believe it or not, greatly impacted my treatment. I didn’t know it yet, but my body’s inflammatory stress response would slow down my progress.
As someone who suffers from CRPS, I have a compromised immune system. This means my central nervous system cannot govern my immune system correctly– my stress level is sky high, I always have a cold or stomach issues, I’m chronically fatigued, and I battle frequent infections that take forever to treat. An infection wreaks havoc on my body– hampering my vagus nerve function and causing massive inflammation, which negatively affects my nervous system and GI tract (which has the daunting task of maintaining immune homeostasis).
I was pulled out of a few therapies, and wasn’t allowed to start new ones because an infection is a contraindication – it would not have been safe for me. Not only was I removed from therapies that calm my sympathetic nervous system, but I was set back in my NMR treatment, which I will describe in full detail in my upcoming post “NMR.” To sum it up, the infection made the NMR pads feel like my pad placements were on fire and the stimulation did not travel far from them. So the treatment was concentrated to one area, making it extremely difficult and painful to manage the physical therapy.
A few days into the antibiotics I experienced a high fever, chills, body aches, and a 48-hour migraine. For the first time since being here I flared to a 6/7 pain. That flare, that fire alarm, was designed to warn me of danger. And like an alarm, if my pain could be ignored, it wouldn’t be doing its job. Its sole purpose was to let me know that there was a problem, even if I couldn’t see it. And when my body tells me there’s a problem, it makes sure I listen. I asked Connor to take me to the ER… you can never be too conscious with an underlying chronic pain condition.
I had a terrible experience at the Washington Regional ER. The doctors and staff didn’t know what CRPS was. I was poked by 8 different nurses with no luck. I have heard stories of CRPS spreading to patients’ limbs where they had been jabbed by needles. They told me to drink more water, re-test myself for COVID and the Flu and I would be fine. “Fine” is what we say when we’re trying not to disturb the peace, make anyone uncomfortable, or call attention to an offense or harm. But I wasn’t fine. I knew something was wrong, but they said otherwise. I don’t think I received the care I should have. They let me go without any diagnosis or reassurance. Advocating for yourself at 25, on a hospital bed, at 4 am, when you are sick, tired and in pain, is difficult enough to say the least.
The next morning, I woke up with full body hives after taking my last pill of Bactrim. I wasn’t able to make it to the clinic for two days. I would say that was my lowest point so far. Worry, pressure and criticism. Somehow I spun this narrative that this set back was the end of the world, life or death– I always go to the worst case scenario – I believed I was slowing down my progress and I would never reach remission with all of these roadblocks.
After some investigating and a quick trip to the Urgent Care, we realized I was having an allergic reaction to Bactrim. I couldn’t take prednisone because it’s an immunosuppressant, which can have powerful effects on the body. Only having Benadryl and calamine lotion to rely on, my rash overstayed its welcome and in turn my skin was very sensitive. I was set back further in NMR and taken out of therapies again.
Seven weeks in Scar Tissue Therapy (PZO) was added to my treatment regiment. In PZO Jen uses a machine to find and break up scar tissue in my body with Shockwave therapy, which uses acoustic sound waves to increase blood circulation to the affected area and break down fibrous scar tissue. Because my allodynia (nerve pain due to sensitivity to touch) at that time very low, we started on my left ankle (the source of my initial ankle sprain). Since then, we have worked on my low back, knees and feet. It’s the most painful treatment at Spero, bringing grown men to tears, and professional athletes to the verge of passing out. However, everyone would agree it’s one of the most powerful and effective.
According to Spero, scar tissue may present as an invisible obstacle to healing, as it blocks the normal flow of nerve communication from cell to cell. Scar tissue can cause tightness, limited movement, and sometimes pain, which affects how far stimulation from the ARPWave machine in NMR can travel in your body. We’re trying to build a stronger-mind body connection, which means the more stimulation I feel throughout my body, the better.
I didn’t think about the holidays when I accepted my spot off Spero’s waitlist; I put my pain first. I soon realized it was a tough time to find ourselves in Arkansas, 1,000 miles away from our closest family. That sentiment was felt throughout the clinic. Thankfully, Connor’s parents Anne and Leo visited us for Thanksgiving. It was my first time co-spear-heading Thanksgiving with Connor. It was delicious. There is no unit of measurement that can grasp how thankful I am to the Wilson family. They are the reason I have a chance at remission; they are saving my life. We cut down our own Christmas tree and decorated it Connor’s grandmother’s needlepoint ornaments and with bird ornaments Connor’s god father bought us after bird sightings during our trip. Our airbnb started to feel like home.
After Thanksgiving Dr. Hannalie analyzed my blood work and performed a standard food sensitivity test make personalized dietary and supplement recommendations regarding specific foods that may be inflammatory to me.
I found out I have a minor intolerance to many of the foods I eat on a daily basis such as chicken, gluten, lactose, white beans, honey, and yogurt – which all increase inflammation in my gut. When you have a food intolerance or food sensitivity, it means your digestive system has a hard time digesting (breaking down) a food. Certain foods prompt the immune system to create internal inflammation. Persistent inflammation eventually leads to symptoms ranging from annoying to somewhat debilitating, including chronic fatigue, frequent or recurrent infections; joint and muscle pain; Insomnia; gastrointestinal diseases, such as acid reflux, constipation and diarrhea; and anxiety and depression.
Since being diagnosed with CRPS, I have done a lot of investigating into my gut and inflammation. I will write a post that summarizes what I have learned, in the hopes of promoting other people suffering from chronic pain to adopt an anti-inflammatory diet.
Happy holidays to you all. Hopefully, I will have more cheerier news about my journey next month. Progress is not linear!
Connor and I have identified the following birds this month: Killdeer, White-throated Sparrow, White-breasted Nuthatch, American Goldfinch, Canada Goose, Great Blue Heron, Dark-eyed Junco, Black Vulture, Turkey Vulture
