ABOUT
DanNoyes.com is my commitment to sharing a personal disability story going from business owner of a digital marketing ad agency to suffering epilepsy that was not being responding to medicine, migraines, vertigo, brain bleed, multiple traumatic brain injuries (TBIs), and a variety of other health issues I never imagined in my worst dreams. It is also a story of dreams coming true and people going over and above themselves to be a blessing to me and my family. It is a story of seeing the best in people and also the challenges of a system that often seems broken as insurance companies fight with hospitals to provide care and then hospitals working to meet the needs of overworked health care professionals (HCPs). It is a strained system and it takes a catarosphic health care situation for you and your family to fully experience the needs that often go unmet.
Understanding Yourself
The journey of transformation from full-health to the up-ending realities of a disabled life can start in the blink of an eye to a sudden life of quasi semi-empowerment that leverages the digital tools, strategies, and healthy reworking mentioned is the focus of this website. With that said keep in mind this is only one story. There are as many stories as there are people going through life. It also reveals the strengths and weaknesses of relationships that oftentimes are unexpected. In my situation this is a journey or story full of pain, ups-and-down, and fighting for my health like I’ve never fought before and at times it felt like my life.. In essence, this is a snapshot of just my journey. I have good and bad days. Times of encouragement and others of overwhelming discouragement. Times when I am filled with full-body pain that make it difficult to even have a hard time getting out of bed and others when I am ready to take on the world. Like any chronic disease, you have to learn to manage the rollercoaster of emotions and also the physical ups and downs.
For me, my diagnosis has been everything
I had to know what was wrong with me and most importantly could it be "cured". Unfortunately, and to be candid they still don’t know exactly what is wrong other than I do have epilepsy and I have had traumatic brain injuries including a brain bleed. I have small fiber neuropathy and I have had more MRIs, CT scans, and one PET scan than I can count as they have tried to figure out what is causing the most pain in my body. I've read scientific journal and seen scientific speakers to see if they could uncover a diagnosis.​
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I had a doctor’s appointment yesterday and the doctor still didn’t know for sure what was causing the pain. However, for now we are saying the pain is caused by small fiber neuropathy. As one rheumatologist told me, neuropathy can be a label, like autoimmune disease. A label that is used when they aren’t sure what is going on. Also because of neuropathy being able to be labeled into neurology, rheumatology, and then a specialty within neurology, it is a term that can be used to define undefinable pain. From a patient’s perspective, it is like a merry-go-round. The deeper you study the topic the more you’ll understand why this occurs. This leads to treatments that change and medications that vary regularly. On a good day, you just need to learn to be flexible while on others it can be very challenging.
This website and my story is divided into three main sections and focused on you. I’d love to share the hope that it might help you as it has helped me, but I have to be honest that sometimes those days are filled with tears and much grief and frustration. I would strongly recommend that as always you work closely with your neurologist and other medical professionals. It is truly through their help that you learn where you stand medically and also where you need to study deeper to understand your condition. It is only through this process that I have become a more informed and knowledgeable patient. This hasn’t always made me friends, but it has helped me understand the medical world, how to be a better patient, and the realities of my chronic condition. For example, when should I seek a second opinion and when do I need to learn to accept the cold hard realities we face.
As you will quickly learn, your diagnosis can seem like a critical part of your story and it sure was true with me. This is especially true for any disease that can’t be seen. You are dealing with a health crisis that is often invisible not only to you but also to family and friends. There are plenty of times when you wish your disease could be seen to help others understand your pain and challenges.
Sound Mind: Seeing what you feel
The next few days I will be spending the days with my service dog alone. I will be missing a wedding of two very special people due to physical limitations. It is so hard to explain what this is like. The best way I can describe it is that you are playing hide and seek by yourself. Mentally you know you can handle it, but psychologically being alone with a disability is tough. You feel overwhelmed, lost, and alone. It is a tough road and usually only happens when it means you are alone as others travel. However, this is usually not the case. It is when you travel or those closest that you travel when this strikes you the hardest. Those who want to understand us, our pain, and our road to recovery and the pain that sometimes accompanies being alone feel free to reach out to us.
The greater the physical manifestation, the easier it is for others to understand what you are facing. A Band-Aid tells the World you have a wound, but how do you communicate that you have epilepsy or that you fell and hit your head? How does a football player show they have traumatic brain injuries? It’s tough so we often keep keep it buried inside. As you’ll see on this journey untreated TBIs can lead to a whole host of other conditions that can impact your life and family.
I will focus on epilepsy and traumatic brain injuries and their impact on my family and the resulting traumas and the dark days and to learn ways to excel through not just to survive. A word of caution. This is not a quick fix. It truly is a process which is why having a support group or group of family or friends or friends that becomes so essential. Having a group to support you will certainly help make the process easier.
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I have epilepsy and will the rest of my life. Nothing will take that or my TBIs away. When I talk about thriving this is being able to get out of bed, do something productive (whether it is coloring or working on a survey with a group like Case Western University). There is no false hope that I will suddenly become "healed" and back to where I was. Healing is really just being the best me that I can become. This is hard to accept and at times you get angry, but it is also an opportunity to push past the challenges and actually become better than you were before. It is possible in some small ways. My mind says I can walk five miles away, but my body says you're stupid and while physically I can do it what happens when I have an amnesia seizure with my dog and walk into the street?