I am a 68 year old woman who has been fighting auto immune diseases since she was 10 years old. I was diagnosed with lupus at 21. I also deal with Hashimoto's. I have had three total joint replacement surgeries, a kidney related surgery, and back surgery, as well as a few minor procedures. When I was younger, I spent a great deal of time in emergency rooms seeking treatment for painful episodes of pl
ueritis, pericarditis, and costochondritis. Now, I really appreciate the existence of immediate care facilities.
The past 16-18 months have been an extremely stressful period in my life. It is a period that included new painful symptoms and the diagnosis of additional chronic health problems. It is a period that included the death of my father and a physically daunting cross country trip to bury him. It is a period that found me dealing with severe side effects from Cymbalta (duloxetine)and then experiencing what the FDA calls "duloxetine withdrawal syndrome." While going through this experience, I fell. I fell hard. I suffered a concussion - mild traumatic brain injury - and injured the arthritic joints in my right hand, wrist, and shoulder. I fell in February but did not get appropriate imaging until April.
As I started the therapies required for physical rehabilitation, I was also preparing not simply to move but to downsize. Sorting a life time of possessions required not only tons of physical energy but also a great deal of psychic resolve. The process was was so stressful that I did not properly protect myself from the sun. The stress and the exposure to ultraviolet rays triggered a lupus flare.
Now, I am on the other side of the move and the other side of the flare. I am organizing my apartment - I still have too much stuff. I am also organizing my time. I have been living in crisis mode. My nutrition has suffered and so has my regular exercise routine. Over the next few weeks I will be organizing my new space and my time to promote rather than to detract from my wellbeing. I will be learning how to cook in a new and much smaller kitchen. I will be figuring out how to store my medications to make sure that I can stay on schedule. I am confident that I will be successful because I am a survivor.
The challenge is doing this while recovering from a brain injury. Many of the people that I encounter are having a verv difficult time understanding how I am affected by the brain injury. My memory is shot. My cognitive processing is much slower. I could go on and on. The point is that people have expectations for me that are currently beyond my cognitive capacity. This is very stressful.
Any suggestions on how a lupangeezer can make headway organizing her new apartment when she can't remember where she put anything? How do I make sure that I avoid sun exposre for the rest of the summer? Any suggestions on how to get people to understand that a mild traumatic brain injury is not necessarily mild? How do I get people to cut me some slack while I heal?