I think we all know that in the health world, Mayo Clinic is considered the “Mother Ship” which is exactly where we are headed. While UIHC has done a great job managing my illness (Ehlers - Danlos Syndrome, EDS) for many years, I have had a lot of its co-morbid illnesses grace me with their presence and as time passes more and more symptoms appear. While so many diagnosis’ have been thrown around over the last two years, right now i’m only going to share with you what we are absolutely certain about. My body is having trouble regulating what should be automatic functions.
**A quick Biology lesson : Our body is made up of the Central Nervous System (CNS) and the Peripheral Nervous System (PNS). The CNS contains the brain and spinal cord. The PNS contains all the nerves that feed the rest of the body. Furthermore, the PNS is divided into the Somatic Nervous System (SoNS) and the Autonomic Nervous System (ANS). The SoNS is associated with voluntary control; things like muscle contraction and body movement. The ANS is associated with involuntary control; the things your body does for you automatically. These body functions include heart rate, blood pressure, digestion, respiration, temperature regulation and hormone, insulin and histamine release, etc.
Dysautonomia is an umbrella term used to categorize all of the medical conditions that cause the Autonomic Nervous System to malfunction. This is where my health issues lie. Pretty crappy, right? All of these functions need to be carried out in order to survive. Don’t worry, it’s not going to kill me, but it is obviously something that needs addressed. As I said earlier, UIHC has been amazing and I will still continue a lot of my care there but they are sending me on to get the help my body needs. Some of my neurological and gastrointestinal issues are outside their comfort zone.
I have a bunch of tests coming up (one of them being an upper endoscopy this Friday) at UIHC and my Mayo Clinic appointments start April 18th. That’s only 42 days, people! I’m in good spirits and very thankful to have a great healthcare team so close. I am anxious to see all the opportunities Mayo will have for me; you better believe that I am going to take advantage of every single one they offer me.
If you ever have questions, feel free to message me!
I have been vlogging my daily shenanigans and will be uploading them to YouTube soon. I totally understand if it is not your thing, but for those of you who want to tune in, it will give you a better understanding of my daily life. Informational videos about chronic illness to come soon as well. I will notify you when the channel is up and going.
Remember, "Count your Rainbows, not your Thunderstorms"!