Welcome to the Amber Luci Project, a unique place for you to explore that explains how I've managed to cope with medical issues related to Multiple Endocrine Neoplasia Type 1 (MEN1), pancreatic neuroendocrine cancer, autoimmune disease, chronic fatigue, joint & muscle pain, and anxiety resulting from all of the above, and living my life to the fullest while doing so!!
I'm a firm believer that no one should feel that a diagnosis is cause to just give up or feel stuck and unable to make improvements in how they feel.
About me:
As a wife and mother, I have the most important job in the world and I take it very seriously, always striving to be the best version of myself that I can be in order to help my loved ones be the best they can be!
I have always had a very high drive to seek out information. My mind is exhaustingly inquisitive and in many ways, I regret not pursuing a degree in biophysics many years ago. Instead, I opted for a career in design that allowed me to learn about the value and interconnectedness of fine details that must go into good design.
I believe that my design background and curiosity is what drives me to learn about how amazing and complex the human body is.
It's a journey that has brought me peace and joy and that is why I'm sharing my story with you.
What is MEN1?
I live with pancreatic neuroendocrine cancer caused by a rare genetic condition called Multiple Endocrine Neoplasia Type 1, or MEN1 for short.
This condition causes neuroendocrine tumors to form on the 3 "P" glands: parathyroid, pancreatic and pituitary glands. Neuroendocrine means that these tumors (or adenomas) can secrete hormones related to the gland that they're growing on. This causes many health problems, if you can imagine!
IN someone with an insulinoma for example, the pancreatic adenomas cause high levels of insulin in the body, which could lead to insulin resistance and bouts of hypoglycemia! Someone with a parathyroid neuroendocrine tumor, for example, would experience high levels of parathyroid hormone (PTH) which tells the body that it needs more calcium in the blood. What happens then is that the body pulls calcium from the bones and puts it into the blood, causing muscle and joint pains, headaches, osteoporosis and kidney stones. There are many types of neuroendocrine tumors and they can appear anywhere in the body. Most times, surgery is needed to remove the overactive tumors so the patient can stop feeling these extreme symptoms.
In medicine, the term zebra is used pertaining to a rare disease or condition such as MEN1.
"When you hear the sound of hooves, think horses, not zebras.”
This saying is taught to medical students throughout their training to remind them to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. This can sometimes lead to delays in diagnosis or misdiagnosis altogether.
I was only 13 years old when I was told that I had MEN1, after watching it take the lives of both my aunts and finally my Mom in 2014, I'm no stranger to this disease. I was fortunate that nothing manifested until my 20's when I had issues with my parathyroids.
In 2007, I was told that I had multiple neuroendocrine tumors in my pancreas after many diagnostic tests. I was having hypoglycemic attacks and went to the doctor. I was lucky that my doctors knew I had MEN1, so they knew what they were looking for. That summer, I had a distal pancreatectomy and splenectomy surgery to remove 80% of my pancreas and my spleen to try to remove the neuroendocrine tumours in my pancreas that were causing hypoglycemic episodes. It was a very major surgery that changed my life completely. I was no longer able to eat the way I had before nor did I have similar energy levels. The recovery was long but the surgery prolonged my life.
The hypoglycemic episodes had disappeared after surgery, but slowly and surely I was overtaken by fatigue, joint pain, muscle soreness, debilitating nerve pain, chronic headaches, digestive issues and extreme anxiety not long afterwards.
I would spend the next decade in therapy trying to deal with all of these issues. I was put on different SSRI's, as well as metformin to control my blood sugars, asprin to thin my blood after losing my spleen, and proton pump inhibitors to help with GERD/ZES as well as antihistamines to help deal with the strange hives I started getting from developing Cold Urticaria after being vaccinated.
I was constantly at the doctors complaining about all of my ailments that never seemed to improve.
My specialist always said that my issues had nothing to do with my MEN1. So I started my journey looking for the causes of my debilitating fatigue and pain I was experiencing. I'll be sharing that here because what I have learned is that if we empower ourselves to learn about our bodies and how they interact with our environment, we can mitigate so many of the other symptoms that plague us.
I will never be able to cure my genetic condition, but my nearly 30 years of living, breathing and learning about MEN1, has taught me that I am not my disease. I am far more, and I believe that sharing my experiences to help others is my true purpose.
Thank you for being here and allowing me to speak my truth!
Hi Pauline! Thank you so much for dropping by and sharing about yourself. It's always good to meet fellow MENers ;)
You're absolutely right about learning as much as possible about our condition, that is why I strive to share information that I have learned along the way, even when it is newer information that hasn't hit the mainstream medical community yet. It is so important to be your own advocate and to never stop seeking answers! All the best to you and your family :)
Hi Amber, thank you for sharing with us your journey with Men1. My husband, my son and daughter also have the famous MEN1 condition. We've been on quite a roller coaster ride, its been 6 years already, so I understand what you are going through. I also have a blog called : mygenesdontfit@wordpress.com. The stories are written from my point of view, as a caretaker. So again, I'll be following your story because knowledge is the key for staying on top of this rare condition.