My life is not my own. My pain is not something people can see. Being open and honest with others is hard and scary. I have been “living” on what seems to be a never-ending roller coaster. I have Complex Regional Pain Syndrome; Gastroparesis; Cyclic Vomiting Syndrome; GERD; Ehlers-Danlos Syndrome; Epstein-Barr Virus; PGAD; Functional Neurological Disorder with Whole-Body Dystonia and Dysautonomia. I have had many diagnoses and honestly it is a lot. Coming forward to share my story I pray helps others who face invisible illnesses as well.
I have times when I can function and pull it together around others. The thing is no one can see what I am feeling on the inside or the crash I go through after. It is easier to put a smile on my face and say everything is fine than trying to explain that I am screaming on the inside as if I am on fire with no way to put it out, having my stomach stretch to where I look/feel like I am pregnant and my skin feels like it is being torn from growing so rapidly, being eviscerated from the inside out, feeling as if I have swallowed a spiked ball that was attached to a mace and it is just tearing me apart on the inside, being bludgeoned with a mallet over my entire body and praying it would all just end. Then there are the times where it is so bad I lose the ability to contemplate time and my parents have to just make sure I have an open airway and try to get me to breathe while creating a safe space so I do not hurt myself when a dystonia or cyclic vomiting episode occurs (because there is no control and the more I fight the bigger/more intense it becomes).
March 12, 2012, was the surgery that changed my life. It was a week later that I was diagnosed and hospitalized for the first time with CRPS. The CRPS was initially located in my right ankle and has since then traveled throughout my body, and I am now diagnosed with Whole-Body Complex Regional Pain Syndrome. Since being diagnosed I have found out so much and have had more diagnoses come up. I love helping and caring for others as well as being with friends and family. Unfortunately, those activities have been decreased substantially and I am not always able to make commitments because I do not know what will be going on/how I will feel or be able to function. I have lost friends and loved ones but during this I have learned who is there and when it is too much for someone. This is not an easy road so it is easier to become more reclusive and stay in places that feel safe (like my home with my cats). Granted there are times where I can pull it together and do things like “normal” people. I am blessed to have families that I have nannied for that are flexible, but it hurts to not be able to be there more and have to miss out because of my health. The thing is that it is a constant balancing act where I feel as if I am having to always learn the hard way…it is constantly trying to be patient and remembering to take life by the second and remember to breathe. There is no cure but there is hope. This hope, sanctuary is in Fayetteville, Arkansas called The Spero Clinic. I have watched miracles happen here and know if I have any chance at a real life/future this haven is it. I need help because I cannot continue this way and unfortunately I cannot make it happen on my own. I have an amazing support system but this is not easy for them either. The finances are not there. I recognize everyone has things going on in their lives so if you could help in any way and even share with others I would truly appreciate any and all help.
The Hope for CRPS & Chronic Pain | Dr. Katinka van der Merwe - The Spero Clinic is where the miracles happen. Every person here is like family and they truly care. To be in a place where you are looked at without all the doubt and stigmatisms of your diseases is the first step to healing. What they do cannot be duplicated anywhere else. It is out of pocket but without it there really isn’t much hope for a fufilling life. When receiving these diagnoses I was told there was no cure, no real hope of truly living and experiencing life then given medications to hopefully help to get some resemblance or feeling of a life. I currently on average reside at an 8.5 on a pain scale(0 being no pain at all and 10 being the worst pain). I have been to The Spero Clinic twice but had to leave prematurely, however, each time I saw benefits and change I thought I would never experience. The change in mindset that all of a sudden I could actually have a life…a future…is still unreal. They have a one size fits one treatment philosophy, tailored to me individually. I will find out my treatment plan when I get there, but I need help getting there, paying for treatments, living and transportation expenses. If you have any questions I will be as open and honest as I can; any help will be appreciated this is a big opportunity for me as well as those who are in my life. I would love to live and help others see there is a future past being diagnosed with something that is known as “The Suicide Disease”.