One word to describe my life right now is chaotic. I am 10 weeks away from graduating from my MPH program and currently in the process of looking for a job where I can hopefully work full time. As if that isn’t enough, I am still dealing with my ongoing health problems. I have had these mystery daily fevers for more than six months. They spike at about 101 degrees multiple times a day and my “normal” temperature has gone from around 98.6 to approximately 99.4. Eight doctors and a myriad of tests/procedures later and these fevers are still a mystery. It has been easy for these doctors to chalk the fevers up to dysautonomia and temperature regular issues, and it is starting to seem like that is the only answer because we have essentially run out of tests perform and other possible explanations. Unfortunately there is not much the doctors can do about temperature regulation issues. In terms of my POTS, I have built up a tolerance for the ONLY meds that have seemed to help my symptoms in the last five years and have had to abandon taking them. This means that my POTS symptoms have been extremely unpredictable. As of now, I have been completely med free for a month and have been functioning solely on the use of hydration therapy for my port. Again, this is not a long term solution and I am in desperate need of better symptom management, especially once I complete school. I have exhausted my possible resources for treatments in the LA area. My best hopes are doctors at Stanford, Mayo and Vanderbilt but they are not feasible options right now due to money, time and appointment availability. On top of that, I am trying to deal with my insurance companies and the approximately $15,000 in hospital bills that I currently owe.
Although it took me awhile to figure this out, I realized that I need to stop focusing on
the chaos ad focus on what works. I meditate on a daily basis. I have done a complete overhaul of my diet which now includes more fruits and vegetables via juicing and smoothing. Working out for me used to be impossible and I was completely against it because of how I thought my symptoms would progress but through trial and error, I have found a regimen that works for me. For example, I started at 2 minutes of pedaling on a stationary bike because that is all my body would allow and have now worked my self up to 20 minutes every other day. These small changes have done wonders for both my physical and mental health. These small improvements are the things that are keeping me functioning. I have picked aspects of my life that were working and made improvements in those areas but also made improvements to things that I could change. While things are far from perfect and far from where I would like them to be, in all aspects of my life, I can’t focus on things that I cannot control. Focus on things that you can control and that DO work in your life. Once you focus on the things that do work and improve on them, your triumphs will outweigh the the things that seem to be failures. Focusing on and improving what DOES work will improve your attitude and will allow you to better deal with the chaos.