Solimar Lugo

Childhood clumsiness, falls, and “growing pains,” leads to loss of mobility in adulthood.

After lifelong back and joint pain/instability, fatigue, and clumsiness, a car accident in October 30, 2019 changed the course of my life forever. I was struck on the rear driver side by an elderly woman, just after leaving a work meeting in Winter Haven. I was taken to the hospital for emergency care, and it was determined that I had no fractures, and was discharged with nothing more than ibuprofen and a lidocaine patch, despite not being able to walk at the time. I fell twice over that weekend, sustained a stage 2 pressure ulcer within 2 days, and went to see the worker’s compensation physician at the start of the new week.

I was sent to the ER again by the worker’s compensation physician who failed to physically assess me, but stated he saw no reason for my inability to walk. I went to a different hospital, where I was found to have a severe lumbosacral sprain and strain, putting pressure on my spinal cord and causing my inability to use my legs. I received proper treatment with pain and anti-inflammatory medication, and was released to work on light duty a week later, once again able to walk with pain and some difficulty. Despite the usual post-accident chiropractic care and physiotherapy, I continued to physically decline.

The usual treatments would initially appear to work, but then I would become increasingly fatigued, pain would worsen, and my joints would become more and more swollen and unstable. I fell multiple times, and went from occasional use of a cane, to use of a walker, to forearm crutches, and now a wheelchair over the next 3 and a half years. This mobility decline, as well as joint swelling and instability was due to what was later found to be Rheumatoid Arthritis and hypermobile Ehlers-Danlos Syndrome, which were severely exacerbated and worsened by the injuries from the accident. Either of these disease processes can cause extensive damage to the body over time. Both together can be debilitating without proper supportive treatment.

I was also found to have several co-existing conditions, including POTS (postural orthostatic tachycardia syndrome) and NCS/VVS (neurocardiogenic syncope/vasovagal syncope), difficulty with digestion, and strange allergies.

Further testing and evaluation by specialists are required for ongoing care and treatment, which is unaffordable at this time, as well as cost of medical equipment, travel to specialists, and time off from work, as I am the sole income of my household. The stress of not knowing how I will be able to afford to manage such expensive diagnoses, how I will be able to care for my children and my mother, and the ongoing unknown of our broken medical system and economy only worsen the inflammation in my body, and thereby my symptoms. If it were not for the support and knowledge of my partner, Carl, I do not know where I would be right now.

I am a Registered Nurse and work in home health care with elderly and other disabled people in my community, empowering patients to take control of their health, understand their medications and disease processes, and prevent hospitalizations. My patients connect with me more easily because I personally understand life with chronic illness and disability in a world that is not designed with us in mind. I work closely with other members of the healthcare team to ensure my patients have the best resources available to them. Unfortunately, many of these resources are only available to the elderly or disabled people on SSDI/SSI and not available to me. I want to be able to continue to serve and support my community as long as possible.

I have always enjoyed nature, and enjoyed hiking, biking, snorkeling, and kayaking with my children prior to my illnesses. I have started connecting with the adaptive sports community, and after a long time away from nature, have been able to use adaptive sports equipment to “hike” again. Adaptive kayaking is next on my list to try! I would love to have my own adaptive sports equipment one day to be able to continue to enjoy time outdoors the was I always did. If I could reach a point where my health is stable enough, I would love to return to school to become a nurse practitioner and help more people with chronic illnesses get the complex care coordination needed to manage our care.

I love dogs, and recently adopted a beautiful lab mix to train for service to aid in maintaining my independence and get better control of my multiple conditions. She has started to reliably alert to seizures, severe migraines, and elevated heart rate, giving me ample time to take rescue medications and significantly decrease the amount and severity of episodes, thereby improving my safety and disease process management.

Donations will help with the exorbitant costs of medical equipment, such as custom wheelchair, appropriate braces for my unstable joints, vehicle modifications, travel costs to specialists, medications not covered by insurance, out of pocket medical expenses, appropriate therapies to help me slow my rate of physical decline, specialists that may not be in network, such as a geneticist to investigate genetic causes for my illnesses.

The first goal is to obtain a wheelchair fitted for my body and my conditions, which has been submitted to insurance for approval, but even if approved, the co-insurance is unaffordable. My current wheelchair was purchased on clearance from a local medical equipment company a couple of years ago, and was sufficient when it was only needed intermittently. Prolonged, continuous use of a chair not made for me can cause further injury, including skin breakdown, unsupported joints/spine, and pain. Other costs will include, service dog equipment and trainer consultations (if needed), and medications not covered by insurance.

Donations to Help Hope Live can help me get the proper treatment, equipment, and support needed to be able to continue to serve my community as a RN, to enjoy my children and grandchild as they continue to grow, and aid me in enjoying my life as it is.

My family and friends are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

We have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button. And please share my page on your social media platforms.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!