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Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I was also diagnosed with POTS. My journey of being diagnosed and dealing with severe chronic pain has been interesting to say the least.
On a day to day basis I suffer with severe chronic pain and joint dislocations. Every year since I was 12, I have gone to the ER every few months for pain so intense that it nearly paralyzes my entire body from head to toe. When asked my pain level during this time on a scale of 1-10, my response is that it is anywhere from 15-20. Usually I am taken to the ER by ambulance, and once I am there I am given what I call my “cocktail of medications” consisting of morphine, toradol, and some sort of anti-nausea medication. After spending hours in the hospital to allow the medicines to work, and my body to rest, I am sent home, usually with pain medication.
Once I am home, for about one to two weeks, the pain paralysis continues. During this time the only thing that I am able to do, is lay down, take pain medication, and essentially cry. Any form of movement and touch aggravates my body to no end causing even more pain. Eventually as time goes on, I am able to gain my mobility back and pain level subsides to my normal everyday level of about 5-7 on a scale of 1-10. During the time when I am at this level feeling my best, I am a very active person despite my level of pain. Since my diagnosis, treatment and care on a regular basis has kind of been up in the air as far as how to properly care for my body being proactive instead of reactive.
Along with having EDS and POTS, I also have asthma and terrible seasonal allergies that persist all year. For years my pediatrician tried to come up with a plan to keep my allergies and asthma at bay in hopes of helping my EDS since they appear to be some of my triggers. I also have been going to physical therapy for the past four years, sporadically most of the time because I lived on campus. While my doctor tried the very best that she could (and I am beyond thankful for her efforts) unfortunately this was never really enough. With my transition from the pediatric world to the adult world, about a year ago, I decided enough is enough. I am a young adult who loves life and wants to accomplish so much in my lifetime, and I told myself that I was not going to allow my health conditions to hold me back in any way anymore. I essentially took matters into my own hands by taking control over my plan of care.
Last summer I made sure that I began attacking all of my symptoms from the source, instead trying to go about my health with the overarching umbrella of EDS. I have severe migraines and insomnia so I made an appointment with a neurologist and I am now followed by one. Upon my recent diagnosis of POTS, I began seeing a cardiologist addressing my specific symptoms of light-headedness, dizziness, and fatigue. As far as my allergies, I started from scratch and got tested for all allergens. To my surprise, I diagnosed with having many food allergies as well as seasonal allergies. I now receive allergy shots once a week and daily medications for that. The allergist that I see also monitors my asthma.
I also made it a priority to get to physical therapy once a week as long as my school schedule permitted. Along with seeing a variety of specialists, I devised a plan to become mentally stronger than my pain. This sounds so much easier said that done but trust me it is possible. Any time I would go to the ER, doctors and nurses would always advise me to go think of a happy place to ease my pain. When you are at your peak, literally screaming your head off in pain, “think of a happy place” is the last thing on your mind. Instead, pain management has to occur on a daily basis and it takes a lot of time and effort to truly begin to see its results. Simple but very powerful things that I have done to aid me in my journey of becoming mentally stronger than my pain include eliminating all foods that I am allergic to as best as I can (wheat, eggs, soy, dairy, tree nuts, peanuts, and shellfish), making sure that I am laying down for eight hours a night (again I have insomnia so I never sleep for a full eight hours but as long as I am laying down, my body is in rest mode), going to the gym three times a week for an hour at a time, going to physical therapy once a week, getting allergy shots once a week, taking all nine pills of my medications everyday, and the main and most important factor, LISTENING to my body has done wonders!
I am still in pain every single day, almost to the point that it is unbearable, but I have reduced my every two month ER visits down to one a year. My daily pain is still pretty bad but honestly I am way better off now than I was before. This past year has been a huge learning experience for me and mentally it is very draining, especially with being a full time student, working part time, and managing my conditions.
My next step is to incorporate counseling and hopefully some form of massage therapy. Adolescent to young adult years are crucial years as far as self development, especially when you have a condition that basically controls and dictates your entire life. Many people during this time do not have anyone to help as family members and even doctors just do not understand, making school and day to day life in general feel like it is impossible. I’m not sure how to necessarily go about it, but I want to help as many of my peers as best as I can whether it be through mentorship, advocacy, speaking at conferences and forums, etc. I know I have a life-long journey ahead of me, but everyday I am a little closer to living an almost pain free life and I want to help as many people dealing with the same condition as myself along the way. Thank you so much for allowing to share just a piece of my journey.Tags: activity, awareness, Coping, Diagnosis Journey, dislocations, Dysautonomia, EDS, Ehlers-Danlos syndromes, hEDS, Mental Health, Pain, school, Self-Advocacy
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