IDF community member, Stephanie Harville of Kansas City, wrote this piece to share with the PI community on why she participates in IDF Walk for PI – Kansas City.
THIS IS WHY I WILL WALK.
I have been struggling with chronic disease and pain for over 20 years. I have several diagnoses that cross care disciplines, and my list of specialists is lengthy. And, in recent years, I have developed new symptoms that don’t fit into any “box.” They aren’t easily diagnosed with lab or diagnostic tests. They have baffled my existing list of specialists, and lead to me being a lab rat undergoing test after test, only to come up with more questions, and certainly no clear answers as to why my body continues to fight itself and be unresponsive to standard meds and treatments.
From my perspective, the main problem is that my specialists and I were chasing our tails and seeking a definitive major disease DIAGNOSIS. Was it: Lupus? MS? RA? And after all the testing, the answers weren’t clear in black and white. I was actually disappointed each time I would learn that I didn’t have one of these crippling diseases. Sounds crazy, huh? But, what I was seeking was a treatment protocol with a “big name” disease. One that came in a shiny package that included things like preventative meds, meds for flares, infusion treatments, research dollars, etc. A disease that people had heard of and understood, for the most part. But that never came.
I had conflicting opinions from Rheumatology and Neurology, so I decided to muddy the waters a bit more and add another specialist to my ever-growing list: An Immunologist. I was not referred to this physician, I sought this out on my own.
THIS IS WHY I WILL WALK.
I walked into the office of Dr. Henry Kanarek, Allergy and Immunology, with a laundry list of specialists, medications, and a 20+ year history of chronic disease and pain. I was introduced to an entirely new approach to testing and treatment, mid-year 2016. He helped me understand that I may never have a definitive diagnosis for these new, concerning symptoms like: extreme fatigue, chronic fevers, muscle pain/weakness, increased frequency/severity with overall autoimmune flares, my body rejecting my implanted medical devices, etc. Rather than spending energy on a confirmed diagnosis that we may never find, he’d work with me to better understand what is at the core of my overall immune health, and develop a treatment plan to improve my quality of life.
But this immunology “stuff” was all so foreign to me. Immunoglobulin blood tests? Titer levels? IVIG infusion treatments? And I was very apprehensive about it. I was diagnosed with primary immunodeficiency, and it was recommended that I start IVIG plasma infusions every 3 weeks, in addition to starting some hefty preventative meds to combat the systemic inflammation that was causing so many issues throughout my body. In 20 years, and with ALL the specialists I had seen in Kansas City and at several specialty clinics out of state that included: Diamond Headache Clinic, Michigan Head Pain and Neurological Institute (MHNI), Cleveland Clinic, how had I never heard of any of this before? I’ve been a complex patient for years. My body has proven time and time again to be stubborn and unresponsive to standard treatments. I have two implanted medical devices and a port for my infusions to show for this.
I started to buy into the immunology thought process and Dr. Kanarek’s way of thinking when I realized that he was doing what I had been longing for every other specialist to do for years—he recognized that all of my health issues, diagnoses, symptoms, etc. ARE CONNECTED. You can’t possibly look at my list of diagnoses and conclude that this is all just bad luck!
THIS IS WHY I WILL WALK.
Each specialist treats you for their specialty. That’s it. End of story. Period. They look at you with tunnel vision for the specialty you are seeing them for, and often times, nothing more. For chronic conditions, you see them every 2-3 months and call the nurse, who you typically know very well, if things get out of hand in between appointments. And, if you’re lucky, you can message your specialist as well, as needed. So, you extrapolate this “X” number of times for the number of specialists that are managing your care on a regular basis. I’ve had as many as 6 in the picture at one time. Today, I manage 3: Immunology, Neurology, and Urogynecology.
Our healthcare system is designed so that your Primary Care (PC) physician is the Quarterback. They are there to assist you in coordinating your care, refer you to specialists as needed, and review your health overall at your yearly physicals. But my PC would be the first to tell you I’m too complex a patient for him. I already have a list of specialists that are managing my care; THEY are ordering tests, THEY are prescribing meds. He isn’t going to do anything contrary to their treatment plan, and at times, doesn’t understand the complexity of my meds or treatments as it is. And when I get an infection, it typically cascades into something more complex, so I’m usually treated by one of the specialists, rather than my PC that may have prescribed an antibiotic, for example. So I shoulder that burden. I play Quarterback. And I do it because I have to, but it is a scary position to be in, because I’m underqualified. I’m savvy. But, still, underqualified.
THIS IS WHY I WILL WALK.
I have a laundry list of diagnoses. None of this is hereditary. Thankfully, no one else in my family suffers from these diseases. The theory is that the Meningitis that I had at age 3 was the culprit, and the mono in 1995, while I was in college, opened up Pandora’s Box. My first diagnosis was Chronic Daily Migraines, and they have been, and continue to be one of the primary areas of concern with my health. I have been the “migraine girl” for years. It has defined me, both positively and negatively. Other diagnoses were a steady progression over the last 20+ years that included but not limited to Interstitial Cystitis, Primary Immunodeficiency, Chronic fevers.
SO THIS IS TRULY WHY I WILL WALK.
Because I believe in this Immunology “stuff.” I believe that this is an emerging medical practice that other medical specialists need to understand, so that other patients that battle complex health, like mine, don’t fall through the cracks, or lose years chasing disease diagnoses. I will always suffer from chronic disease. Because it is just that: Chronic. But it can be managed, and you can have a better quality of life than I have seen in recent years. I am still working towards improvement, but the key word there is WORKING. While the therapies aren’t magic, they are helping, and Dr. Kanarek is committed to ensuring I spend less time shackled to my couch. So, I will walk.
I will walk to raise awareness for Primary Immunodeficiency diseases (PI) and other debilitating autoimmune diseases.
I will walk to shine a light on these “invisible diseases” and to support other pain warriors at the walk in Kansas City and around the world.
I will walk to raise money for PI research.
I will walk to let others know they are not alone and they don’t have to suffer in silence.
I will walk in honor of others that suffer that may not be able to walk.
I will walk to feel a sense of community and to acknowledge my medical team who is also participating in the event.
I will walk as a personal reminder to myself that there is hope. That events like this are real, and though the challenge is great, they can, and will make a difference in my life and others as well.
I will walk side-by-side with my family and friends that support me on a daily basis and push me to keep going, even during the most difficult times.
The link below will take you directly to my Stylish Aim team page to register to walk or to donate.
WILL YOU JOIN ME? WILL YOU JOIN US?