A Diagnosis: The Answers You Need to Process & Live
Blog Post #6
The hope for better days cannot begin without a diagnosis. A diagnosis is oftentimes just the very beginning of your next step on your journey. From here forward, you can make wiser, informed decisions about your health and start incorporating symptom management tools. For this life, I have prayed. To have answers as to why some days I can feel like I’m dying and others I can feel almost “normal”. These answers, I longed for for so long, have meant relief and validation. But my “normal”, I’ve realized, is still a life of intermittent pain and symptoms. Ever since my elementary school years I knew something was wrong with me. I remember staying awake in pain and having episodes of dizziness that would last for hours. One of the first signs when I started to realize I was different was the way I would hold my pencil compared to my friends. Now I understand the reason I had such a difficult time was because of my hypermobile fingers. During school and after hours of writing, my hands and fingers would always cramp and be very painful. I had spent more time than normal in the nurse's office in my younger years. Most of the time it had to do with unexplainable GI related issues or headaches. Another debilitating symptom I remember getting worse in my middle school years was all the extreme neck pain and discomfort. I remember trying physical therapy and chiropractor and not really experiencing any true relief. I also had seen some medical specialists at a rather young age, but never left with any answers other than everything was “normal”. I do not put any blame on my parents, however, I believe as parents it can be very hard to advocate for your children if they are experiencing pain. At such a young age it’s very difficult to express our pain in words, especially when a majority of this pain and symptoms are “invisible”. How can we better help children at such a young age understand what type of pain they are experiencing? Is it a dull ache, sharp and shooting, throbbing, cramping, stabbing, intense, severe, sore, nerve like pain, constant, intermittent, etc. These terms can sound so overwhelming. Even to this day at 29 years old, describing what type of pain I experience on a daily basis, can feel like it’s unexplainable. Especially when you are currently not in that specific pain, it becomes almost impossible to remember what it “felt” like. Journaling my symptoms and pain in the moment have been beneficial for this reason. After your diagnosis of EDS, often times an “aha” moment will happen for you. EDS has many co-morbidities. As you continue along this journey, many other questions will be answered. Pictured above is me in a hospital room before getting wheeled in for my Upper Endoscopy with 96 hour Bravo pH study on July 18th of 2023. This test alone has yielded more answers related to my histamine intolerance and it’s connection to acid reflux. Histamine intolerance can sometimes be that alone or can cause more severe problems leading to Mast Cell Activation Syndrome (MCAS). MCAS is another common co-morbidity of EDS. I hope my story and journey here inspires others to advocate for answers related to their health. The medical system and healthcare in America is so flawed. I pray that someday accessing Joint Hypermobility is something pediatricians start to incorporate as part of their annual exams/physicals. For those that are still on a diagnosis odyssey, I think of you each and everyday. I pray for your resilience and wisdom to allow you to continue advocating for answers. I am just in the beginning stages of healing my nervous system from years of medical trauma. I want to share with you that my inbox is always open, whether it’s via email, instagram, or text. I am here for you. I see you on your journey. You are loved. You are always welcome here.
Stay tuned for my next blog post.