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My name is Rebekah. I am a former professional vocalist and theatrical performer. I am a travel expert, travel designer, and marketing manager, mother of three amazing sons, and wife to the most supportive husband in the world.
My life was going pretty well until seven years ago. We were in a car accident. Our car flipped four times down an eighty-foot ravine, throwing both my youngest son (15 at the time) and I out of the side windows. This accident was what triggered the onset of my symptoms.
Two years ago, I was diagnosed with dysautonomia, postural orthostatic tachycardia syndrome (PoTS), hypermobile Ehlers-Danlos syndrome (hEDS), Bertolotti syndrome, and median arcuate ligament syndrome (MALS). Shortly after, we found out I also have Chiari malformation, degenerative disc disease, Mast Cell Activation Syndrome (MCAS), seizures, rheumatoid arthritis, and most recently, kidney disease. There have been tons of doctors, specialists, surgeries, and tests. But it wasn’t until we moved to Dallas and met a leading dysautonomia specialist that I was finally given an answer.
The last year, in particular, has been rough. One specialist after another and six surgeries. After back surgery in 2019, I began physical therapy in November and have been going ever since. There were a few setbacks at first and I honestly started to accept the fact that I may not walk again. It felt as though I would never be strong enough. However, I can proudly say that now, after 8 months, I am finally strong enough to get on the stationary bike. I may be slow but I am moving forward.
I am gluten-free, dairy-free, and sugar-free because I have to be. I am learning to better manage my pain and my inflammation through an anti-inflammatory diet, kinesiology tape, essential oils, CBD, and physical therapy.
I am an autoimmune warrior, chronic illness warrior, chronic pain warrior, patient leader and advocate who has come to terms with the fact that there is no cure for me and my life will never go back to the way it used to be. However, I have learned to love the new me and love my spoonie friends even more.
I have accepted that I will never be the same as before. But I am definitely NOT less. I am already a better version of myself.
My next mission is to bring higher education and awareness to the public and the medical community through my blog and advocacy efforts.Tags: advocacy, awareness, chiari malformation, Diagnosis Journey, Dysautonomia, hypermobile EDS
Categorized in: Stories