I’ve reached a place of absolute mental exhaustion. I’m tired of reading, researching, and digging. I feel that I shouldn’t have to do those things, but that I have no choice. I’ve given so much of my time believing finding the answer would lead to a diagnosis by a physician. Since stumbling across mast cell diseases in 2015, then coming upon the realization that I have other undiagnosed comorbidities (symptoms which have been brushed off by healthcare providers for years) as well I don’t feel like I’ve made much progress in getting help. Finding a healthcare provider locally has been futile. My search for a new PCP who will oversee ALL my issues is still not over (a story for another day). Six long distance trips to three other facilities in 2016 have lead to little answers. I believe they could have lead to answers but they did not.
I am SICK of doctors. I am SICK of tests. I am SICK of being SICK. I WANT my life back. I WANT my nursing career back. I WANT to work at least part time. I WANT to be able to go outside and enjoy the sunshine in my gardens and outdoor activities again. I WANT to be able to go back to school and become a Nurse Practitioner. I WANT to be able to help people like me who have been given up on or cast aside. I WANT, I WANT, I WANT… I try not to think about these “WANTS” and concentrate on what I can do, but it is near impossible for them to not enter my mind as so many of them are normal activities of daily living.
This summer has been really hard. My reactions to the sun and heat has gotten much worse. I get extremely weak, shaky, feverish, achy, flush with burning rash, and begin swelling within a very short time of sun exposure. Sun exposure being from the distance from home/building to car and the amount of sun through my tinted car windows plus the exposure to all the fluorescent lights in stores. I’ve been slowly weeding out all the CFL and fluorescent bulbs in my house, as finances permit, because they have the same affect on me as the sun. We are still working on putting up tinted, mirrored film in our house windows. The longer the exposure to all of these unavoidable photosensitivities equals the severity of the reaction. The days of trying sunscreen, UPF head to toe clothing, wide brimmed hats and dark polarized sunglasses does not cut it any more. Leaving the house without carrying a cooler with lots of ice and drinks is a risky, possibly dangerous, decision. Keeping my body cool is an absolute necessity and one of the best survival skills I have learned through the many years of my progressing symptoms.
It is not easy to leave my house. It takes a lot of planning, and a lot of anticipating “what if” scenarios. It is not easy missing social events because of environmental factors and allergies that are not in my control. It is not easy going to the doctor and coming home with no care plan. It is not easy navigating all the many obstacles in life and the murky, politically charged, watered down healthcare system. All of these things and so many more have left me exhausted. Grieving for the life I had once and the dreams I’ve had to let go. I think it’s time I give my body some rest and just be.