Telling my story is something I rarely do;however I am about to have surgery on May 8th and I need support. This will be my 16th surgery in the past 3 years.
Up until 5 years ago, I was a modern day single mother working in the emergency department serving and helping my community . I began to develop severe neurological and musculoskeletal symptoms. It took two years to get my diagnosis;but after multiple specialists,I was diagnosed with a rare genetic collagen/connective tissue disease. There is no cure.
Most of my surgeries involve stabilizing my skeleton, brain and skull. I also had to have a stent put in my brain because I lost my peripheral vision. Initially I was able to work between procedures;however I have not been able to return to work for almost two years.
I am currently awaiting my disability hearing which is scheduled for the end of July. I remain hopeful that someday I will be able to return to work in some capacity. I am maintaining all of my certifications and also studying to become a patient advocate. When I am well enough, I hope to volunteer my time to help others navigate the complex health systems people with chronic,terminal and dehabilitating diseases face on a daily basis.
The financial hardships of not working,paying for my own health insurance, paying for out of network specialist who are out of state (requiring travel and hotel expenses on top of out of network fees) have been devestating. I have drained my financial reserves and maxed my credit. The deposit alone on my surgery in May is $7,000. Not to mention the fact that I must stay in the area for at least two weeks after surgery. Multiply these expenses times my past 15 surgeries and one could see why I am reaching out for help. My retired parents and I are running out of options.
I also require a great deal of supportive care such as physical therapy,accupuncture/dry needling, special exercise strengthening/personal training, dietetics,assistance with household chores etc;most of which is also out of pocket. I have had losses on every level:physical,emotional,financial,social, personal. It feels like my life as I knew it is dying. I even had to give up my two dogs because I physically and financially could not care for them.
My daughter Ellie has also been diagnosed with this genetic condition and we are struggling to physically and financially get her through college.I have spent my entire career (24 years) caring for others. While I never expected anything in return for my service, I know that God can choose to bless me and can turn any trail or struggle into something good. No one can take away the stress of impendig major surgery or the effort required for painful rehabilitation however;my family would greatly appreciate any assistance you are blessed with being able to provide.
I have never been connected on any form of social media but if any of you have Facebook or other accounts that reach people who might be interested in my story please post my link to your account. Thank you so much!
I appreciate you taking the time to read this.
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