I seriously thought that apart from manual Physical Therapy, I was set with the last of my important medical appointments being canceled due to the COVID-19 public health emergency. But, I just checked my messages to find now my ENT appt for tomorrow is canceled with no reopening date set. This means as the wax keeps building up in my ear canals, I will not have the opportunity to have it removed without access to this treatment. I will experience increasing ear pressure and more loss of hearing. What fun to have another challenge to take on.

Those without medical complications do not realize how the gradual elimination of our treatments can have such immediate and often long-term impacts on our lives. I have lost help with the jaw specialist for my dislocating jaw, colonics for the shutdown gut, dental work, along with my husband who lost his appointment to receive the hearing aids he had just been fitted for. Even my service dog has lost her help – no more eye examinations for her for a full year. She is now turning twelve and dealing with cataracts and deteriorating eyesight.

I know what I have described is nothing compared to those battling serious cases of this virus. I do not mean to sound selfish, for at least I still have a life to live. But many of you reading this also have medically complicated lives and hopefully, have learned what treatments to turn to help achieve a better quality of life. So, the additional losses of treatment providers mean potentially less and less quality of life to experience for what could be a very long time.

When I think of the years it has taken to find medical professionals capable of working with me to develop effective treatments for my condition, it is truly heartbreaking to watch this work slowly compromised in its effectiveness. Living with Ehlers-Danlos, one does not just recover normally from any secondary medical condition. We are vulnerable and prone to longer recoveries. I have endured twenty-five surgeries to improve life. Due to the elimination of critical treatment, I see my physical condition deteriorating through no fault of my own. Again, I know there is so much worse around me and to make it through this chaos not coming down with the virus will be a huge gift to hold on to.

I truly hope that all you who are reading this will have a positive ending to this pandemic. And I hope that all of those you care about will follow suit too. And if this is not the case, may you find the inner strength to cope with whatever you are given to deal with. Try hard to stay constructively engaged with purpose and be creative with things you can enjoy as you work to make it through the chaos of this anxiety-provoking period we find ourselves mired in.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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