Take a moment to think back to when you were 8 years old. At that age, many little girls love doing gymnastics, dance, basketball, soccer. When my sister Kathryn was 8, she loved all of these things and was especially good at annoying me and my brother.

Now imagine that one day you wake up and things are different. You have a pounding in your head, and nothing seems right. That day, your life changes. Soon enough, you will remember that day as the end of your life as a carefree kid.

My sister, Kathryn, now 24, has been struggling with chronic debilitating headaches and migraines since she was that spunky and energetic 8-year-old I described. She has had a difficult journey over the years, with more hospital admissions than I can count. She has undergone trial surgical procedures, been involved in research studies, participated in elimination diets, holistic pain management techniques, acupuncture, chiropractic’s, color-tinted lenses, tried nerve blocks, nerve decompression surgeries, cognitive behavioral therapies, chronic pain support groups, and even spent an extensive period of time living at the Ronald McDonald House while she was enrolled in the Hasbro Children’s Hospital pediatric partial pain clinic.

KJ, as we call her, has been an advocate for as long as she can remember. She has continued to dream big and have amazing goals for herself, but often finds herself limited by the affect pain has had on her body. With a plethora of diagnoses (ranging from trigeminal neuralgia, idiopathic intercranial hypertension with a cranial shunt, occipital neuralgia, dysautonomia, migraines, postural orthostatic tachycardic syndrome, small fiber neuropathy, a history of Lyme disease, suspected Ehlers-Danlos Syndrome, anxiety, depression, to gastroparesis), and having gone through every pharmacologic and medical intervention proposed to her, her body and her mind are at the end of her rope.

Many people may not know this, but Kathryn always wanted to be a nurse because she has an incommensurable ability to understand and meet people and patients where they are at. However, her pain has interfered with her ability to read, study, focus, and take the necessary steps to live a “normal” daily life that would allow her to go to college to pursuit her dreams. She has been a big inspiration in the career path I have chosen and continues to inspire me every day.

Over the years, my sister has become hesitant to go to the Emergency Department when her pain becomes more unbearable than it is on the regular. She has often been labeled as drug-seeking and dismissed when she asked for a “headache cocktail” or stronger pain meds than Motrin or Tylenol. Her mental health has been affected detrimentally as she lost her ability to participate in family functions, stay in touch with friends, go to the beach, the pool, play outside, listen to music, read books, or watch TV. While distractions used to be our go-to on bad days, getting her out of bed suddenly seems barely achievable.

My sisters pain doctor recently retired, and her care was transferred to another pain specialist who she has worked with in the past. Her pain is not managed by the interventions within the scope of her doctors practice, so she was referred to a pain clinic in Florida that specializes in Ketamine infusions for both chronic pain and mental health diagnoses.

Unfortunately, this is not likely to be covered by insurance. My parents, who have been my sister’s biggest support system and advocates, have used their retirement account to fund her medical care in the past. This time around, I’m not sure how the expenses will be paid for. The series of ketamine infusions for chronic pain total around $16,000. This is not including lodging, additional medications/prescriptions/interventions used in her care, or the travel expenses that will be required for her extended stay in Florida. This is where GoFundMe comes into play. I know economically, times are tough across the board but even just sharing KJ’s story helps to advocate for the obstacles that those who live with chronic pain face.

In the meantime, I’m continuing to push forward in my studies to achieve my Doctor of Nursing Practice (DNP). With this, I will hopefully have more access to make changes in policy and patient care on a state/federal level. While the opioid epidemic is a problem that cannot be ignored, the laws put in place to protect providers and patients often cause the most harm to those living with chronic pain who can no longer get the medications they need to bring their pain to a tolerable level.

While Kathryn struggles with her mental health daily, she has future aspirations for when her pain returns to an acceptable level. Reminding her of the strength she has and the value that comes with her advocacy will hopefully keep her going when she feels she cannot go on another day.

We hope to continue to share her story by participating in the “Don’t Punish Pain” Rallies in Waltham, MA in late October and plan to save up money to attend next year’s Headache on the Hill Conference in Washington, DC.

If you have the means or interest to support Kathryn and my family in any way, it will be more appreciated than we can express in words. If you are more comfortable in using Venmo, in which processing fees do not apply, that is absolutely an option. We are so grateful for support in any shape or form. Please feel free to reach out to any of us!