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I realize many of you might not know my ‘whole story’ so I’ll provide a brief synopsis here. I started having ‘flares’ of illness 12 years ago in 2011 after I stopped nursing my first daughter. That first ‘big’ one was memorable. I felt like I got hit by a truck. At first I was sure it was the flu- everything hurt, I had a mouth full of painful sores, abdominal pain and diarrhea, headache, and a low-grade fever. It lasted 10 days or so. At this point a pattern began to emerge slowly and over the course of the next 10 years I saw two primary care physicians, two Gastroenterologists, and two rheumatologists, had countless tests which were painful, expensive, and time consuming, but none of them which could tell me why I had these issues, which were escalating over time. My flares became more severe and longer with shorter periods of health in-between. For a few years, frustrated with the lack of answers or solutions to my struggle I resigned to live with this unknown ‘condition’ accepting that this is my reality. I managed those years with over the counter medicines and the help of my PCP to manage my worst day to day symptoms but I was fading away physically, mentally, and no longer the person I recognized myself to be.
In 2020 that all changed. I got so sick I couldn’t get out of bed. I couldn’t work, or parent my kids, and there were now no breaks between flares. My whole life was a flare. This was an important turning point for which I am now grateful, even though the road continues to be a long and winding one. My PCP sent me to yet another rheumatologist, who vowed to help me live a better life, even if we couldn’t get to a concrete diagnosis. This is when the “medication hell” component of my journey began but I will spare you those details here. Simultaneously to starting treatments, including; steroids, Dapsone, colchicine, Otezla (some of which addressed my symptoms and some of which made me sicker) I began to pursue my own path to diagnosis. I documented my medical history in detail using photos, lab and test results, I described my symptom patterns in writing (this was all during the pandemic, by the way) and decided to “crowd-source” my own diagnosis through the expertise of my brilliant doctor colleagues/friends at Lilly Immunology (with their individual permission, of course, and with the caveat that none of them were my treating physician.) Thanks to each of them I was able to tap into unparalleled expertise across a multidisciplinary team that included a dermatologist, an acute care physician, a gastroenterologist, world-leading Immunology researchers, and experienced rheumatologists… and all of their responses were the same, “have you ever heard of Behcet’s disease?” Finally, after 10 years, I had a name for this suffering. The relief that came with a diagnosis, even a preliminary one, is hard to describe.
Behcet’s is a very rare disease (although maybe not as rare as we’d like to believe) with a prevalence in western countries estimated to be ~5 patients/100,000. It’s typically associated with people of Turkish, asian, or mediterranean descent (which I am not) and has often been referred to as the silk road disease. It’s a multi-system inflammatory disorder believed to be a form of vasculitis that can only be diagnosed by exclusion (hence the many doctors and tests) and it manifests differently in every patient. It can affect your skin, eyes, joints, organs, and virtually any other body system but the only symptom that virtually ALL patients have are persistent, painful mouth sores.
Late 2021 brought a pretty major crisis when I contracted COVID19. Like everyone, it seems it was bound to happen at some point. I came home from work crying and laid down on our living room floor. That’s when Dan said, I think we should test you… and I was positive. Both of our kids were too, but with no symptoms. I was deathly ill in bed with a fever for 14 days straight. Dan would test my pulse-ox regularly, bring me food and drink, and try to encourage me but this was (up until this point) the very darkest time of my life. On day 10 we went to have the COVID19 antibody infusion to try to turn things around. Of course Dan couldn’t even come into the hospital with me due to the restrictions. I sent him a text with a photo as they started the IV flowing that said “Feeling hopeful.” Within about 3 minutes my whole body seized up and I was wracked with what felt like a spasm of fire that began in the base of my spinal cord and wrapped around my whole body making it difficult to breath. I pressed the emergency button over and over and they came to turn it off and rush me to the ER. After ruling out anything that would kill me immediately (which is pretty much what they do in the ER) they sent me home. My systemic pain and debilitating fatigue was so overwhelming I began to lose touch with reality. I could’t find words, or solve simple problems (like planning dinner), and began to feel like I was inside a deep, dark, hole. In retrospect I believe this was my first real neurological flare of Behcet’s but I didn’t know that at the time. I crawled out of the hole thanks to my loved one’s support, Zoloft, prayer and meditation, moving my body a little bit more each day, and eventually starting Humira.
March 2022 to early 2023 was a fantastic year. I was virtually in remission. My brain was working again, I LOVED my job, we traveled and celebrated and ate great food and embraced every moment that this reprieve provided. I knew when we began that there were no guarantees how long this medicine would work for me. I had accepted that it could be 5 months or 5 years…. It turns out it was about 12 months when I had to increase my dosing from biweekly to weekly. And then I continued to decline. I stayed with it as long as I could… until I was losing whole days of not being functional, losing weight without trying, and hurting most of the time. So we switched to Enbrel. Things started out great. Within 24 hours of my first dose I felt good. My energy especially was high, although my pain was not under control- but in some ways I have accepted pain as a fact of my life- so I just kept going. I felt hopeful that the Enbrel was doing the job, keeping my inflammation at bay (always with the help of steroids since 2020.) We had some fun trips planned (my very favorite hobby), one to Disney World as a family and a 15th wedding anniversary cruise to the British Virgin Islands that I was excited about. My work was deeply motivating and fulfilling. And then all hell broke loose.
And this is where my caring bridge journal begins. I lost the ability to walk at Disney World… and since then, October 18th, I have been chronicling my path to a diagnosis of Neuro Behcet’s disease (about 10% of already-rare Behcet’s patients who have neurological involvement), where the immune system attacks your brain and/spinal cord, ruling out other potential causes/complications, and and pursuing an effective treatment that has the possibility of providing another period of remission.
I am sorry it’s been so long since I’ve made a post. Recovering from a debilitating health event is challenging both mentally and physically no matter what the time or place but the freezing temperatures and lack of sunshine in Indianapolis during the month of January added another dimension. Despite my commitment to practicing gratitude, keeping a positive attitude has been difficult at times. All the people around me continue to tell me that I am improving, and I believe them, but at times my day to day improvements have felt so small as to be imperceptible to me.
In my mind, I was going to be well enough to return to work this week. So when I realized, just a couple of weeks ago, that I was not on a trajectory that would make that possible I was pretty devastated. I had reached a very frustrating plateau in my recovery both in terms of pain and function, leaving me filled with uncertainty and disappointment.
But this journey continues to be a rollercoaster. I was able to spend some wonderful time with my sister last week, which was good for both my body and my soul. My ability to walk unassisted has improved significantly over the last week and my pain, while not gone, is more manageable most of the time. I continue to pursue lots of options simultaneously in order to find relief and improvement. I am scheduled to receive my next infusion of Remicade later this week, and I am now seeing my neuro immunologist and pain navigation specialist in addition to my primary care and rheumatology physicians. I continue to do physical therapy, massage therapy, mental health therapy, and get chiropractic adjustments regularly. And on top of all of this I have started to explore what a functional medicine approach might bring to my recovery. So far, the biggest intervention is to explore how moving toward a modified paleo diet might positively impact my health. There is some interesting research on the topic (check out The Wahls Protocol if you’re interested.)
Thank you to all of you who continue to keep me and my family in your prayers and keep reaching out to check-in and send words of encouragement. Please continue to pray for healing, for the mental fortitude to stay positive while working toward recovery, and for the patience to trust in God’s timing.
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