Lyme Life-Rippling Relationships
Lyme Life-Rippling Relationships
Josh Cutler is known in the Lyme Disease Community as a group leader in several forums and a pioneer for spreading awareness in news rooms and throughout social media networks. In addition, he is on the comity for the annual Lyme Disease Rally (MayDay Rally) held in Washington D.C. This year the rally was held at Freedom Plaza and Cutler, along with his wife, was very strong activist; spreading awareness and marching down to the capitol with hundreds of others to protest the politics behind treatment of the difficult disease.
My last article, “Stealthy in Summer,” was the first series of discussions regarding how dangerous a tiny tick truly is and how it can affect your life or someone you love, forever. As we continue to cover the unhidden truths behind the illness, we step into the world of relationships and how they are affected drastically by daily living routines for friends and family members.
Cutler is a Chronic Lyme Sufferer with symptoms present for eight years now and is in stage III of the illness. This stage is the latent stage meaning the infections are persistent, difficult to treat and manage. Cutler has been infected with Lyme disease along with several co-infections (Babesia and Bartonella). As many other sufferers have found, ticks carry a multitude of infections. Up to ten different diseases can be transmitted from the tick to the host. Cutler remembers getting bit by a tick where two weeks later he came down with “the world’s worst flu and all the crazy Lyme symptoms to boot.” These symptoms can consist of up to 86 different ailments, making it very difficult to understand what is happening to the body. Regarding treatments, the IDSA (Infectious Diseases Society of America) states antibiotic treatment over a six week period will cure the illness. Over time, doctors have seldom found this treatment effective, especially for longtime sufferers. Cutler has seen several of the country’s top Lyme Doctor Specialists without any success and little relief from their attempts in treating him. He has also tried more aggressive protocols which consisted of variations of antibiotics in rotation, but unfortunately Cutler has not had much success with it. He now is trying herbal treatments and is hopeful, “I am seeing some success. I love my Doctor now; he has been a life saver.”
Cutler is married to an incredibly supportive wife of eleven years and they have two children. Although his journey has not been easy, he keeps a strong faith and focuses on the silver linings through it all. “Being a father to 2 young boys and a husband of 11 years while being sick hasn’t been easy. We try to take joy in the little things and enjoy each step of life as it comes. I have yet to find that perfect balance; if I do I’ll let ya know.”
However, this state of acceptance wasn’t always the case for Cutler. As many, the beginning stages were extremely trying times. It was only a few years into his marriage, before he was officially diagnosed when he dealt with the most difficult aspects of the illness: mourning your previous life or health every day. “For the first couple years of this, no balance existed. It was me in bed all the time. I had to have assistance using an aide to be able to shower and use the rest room.” These are tasks many people take for granted as simple daily tasks. For Cutler, showering was comparable to a full work day. He was also disturbed by the chronic fatigue that comes with the illness. “I was sleeping 17-18 hours a day. It was hell on earth for me.”
“Finding balance has been one of the most difficult parts of this disease.” Eight years into his illness, Cutler is attempting to find balance through these difficult flare ups, unexpected symptoms and changes in his body that can be debilitating at times. These flare ups can affect his ability to assist his wife or be the husband and father he desires. Yet despite these difficult times, Cutler stays strong in his faith and does all he can to help his family. He is learning to balance this obstacle as he has adapted to this life of illness reaching for health. “Now, within the past year I have been able to try more of a balance. It has been very challenging. If I overdo it (physically, emotionally), I pay tremendously for it. But sometimes I do just that.
We have to live life sometimes, regardless of how we feel, to remember what it is we are fighting for.”
Throughout all his symptoms, Cutler continues to be an advocate for Lyme Disease and was the main adviser for the third annual MayDay Rally this year. Many of us watched as Cutler pushed through his symptoms to do interviews at the local news stations (http://www.wusa9.com) to create one of the most successful Lyme protests in the United States to date. Cutler felt honored to be such a large part of this year’s rally. Cutler was part of how the MayDay annual rally was born. “To protest the IDSA (Infectious Diseases Society of America) and then march on into Washington was a dream that I had 3 years ago. At the time, my plans were quickly derailed due to a current Lyme bill that was in the works. Several organizations didn’t view it as wise to do this (protest) at the time. It was after that point that Tim Grey approached me and we assembled a team of talented people to start what is now the annual MayDay rally. To see this year compared to our previous years efforts brought tears to my eyes. We don’t only want awareness we want a cure. Planning the event even with a roster of amazing people was a huge challenge. One of constant stress. As we were able to see the outcome of this event and everything pulls together, every ounce of stress and sweat we put into this was well worth it. We plan to continue every year growing in numbers till we are heard by our nation.”
For more information on how you can be a part of the annual MayDay rally or help spread awareness visit: http://www.themaydayproject.org
This was originally published in Sonic Eclectic by heatherochsnerprince July 30, 2013