Have you battled and struggled to convince people that you think you have an autoimmune disorder? Do you know something is wrong with you, but nobody listens, and they don’t “hear“ what you are saying? Each visit to the doctor fills you with more self-doubt, anger, and hopelessness. I have. In 2004, my body was on a “self-destruct” mission, and I had to experience all those feelings combined with all the physical and mental signs and symptoms of a disease that took almost a year to diagnose.
Unfortunately, this happens all too often when it comes to autoimmune conditions, and today I want to share my journey with you about how studying holistic nutrition, slowing down, and connecting back to my body helped me learn to live a more balanced life and take control of my own health!
“My Autoimmune disorder started suddenly – without warning.”
It all started with a simple rash, it appeared on my inner arms and thighs, armpits, chest, and some on my face. Thinking it was allergy-related, I did all the “normal” things, Benadryl, anti-itch creams, and lotions. Anything that might help alleviate the horrendous itching that I was experiencing. It even itched inside my nose and ears! I sought medical attention and agreed to see if it was food, animal, or product allergies. It continued to progress and now my body was experiencing muscle incoordination and muscle weakness, my skin started to blister in huge pockets filled with fluid and eventually became blood-tinged.
I began to experience uncontrollable mood swings and the pain from the itching was getting more intense. All the prescription allergy medications were tried and failed. There were times breathing became hard and it felt like my lungs couldn’t get in enough air and my heart would race. I struggled to lift anything, even my own arms. One day at work, my breathing became harder, my heart was racing, and a gallon of milk was too heavy for me to lift. At that point I was taken to the clinic and finally sent to a skin specialist. I was hopeful that someone was going to see that this was not a normal rash, this was something very serious!
I was rushed 90 miles away to a skin clinic where they immediately took a skin biopsy from the rash on my chest. Sitting there waiting for the results, I was filled with doubt once again, wondering if this visit would be a dead end as well. All I wanted was for someone to tell me what was wrong with me and fix it! That day, I got half my wish. There I was diagnosed with Dermatomyositis, an extremely rare autoimmune disease.
I was genetically predisposed and usually, an episode with an infection brings it forward. I was told that the medical community usually only sees this disease in medical journals, that’s how rare it is. When they told me my only words were ” why couldn’t I have won the lottery?”. Even more humiliating was having all the medical staff come in to see my symptoms because they would likely not get to see it again.
The doctors then informed me that since it is so rare, there are no treatments or medications to alleviate or maintain the disease. Plus, a lot of times the underlying reason could be cancer. My world sank. My husband and I just sat there. The only medication was a very dangerous drug which I turned down! Tests were ordered at my home clinic to try to pinpoint what the root cause could be, but I was highly uncomfortable with most of them. I did do the cancer test and thankfully it came back negative.
Autoimmune disorders and Nutrition Go Hand-in-Hand
Now my curiosity started to kick in and my sister and I went on an in-depth search to find out about this disease and what to do. Nothing positive was coming back. It was known to be associated with MS, Rheumatoid Arthritis, Lupus, and other diseases. We discovered there are 4 variations of Myositis; Dermatomyositis, Polymyositis, Juvenile Myositis, and All-inclusive Myositis (which affects mainly men) and each person will have totally different experiences with symptoms. This made research even more important to me. What I found over and over again, was that nutrition & food played an important part in autoimmune diseases.
Whether you have a major outbreak or just want to manage your symptoms. I investigated and tried herbs that help with certain parts of the body and organs. Some helped a little and some didn’t. During all this time, the disease had me almost unable to walk. If I sat in a chair, I would need help to get up. I could hold my grandson, but I couldn’t move from the original position he was placed in my arms. I could walk to the sink, rest, then walk back. My blisters were now filled with blood, and I was told I looked like I had been burned. My hair started to fall out and when I ate, I had trouble swallowing.
“Holistic Nutrition and Herbalism helped me understand and control my autoimmune condition.”
This was the point when I knew I had a decision to make, learn to manage my disease or let it consume me. In my search, I found an herbal formula at an overseas clinic and ordered it. This was the pivotal moment when I started to believe in natural nutrition & herbalism. Like many herbal formulas, they are created to minimize the disease and this gave me the chance to start to feel like myself again and really start to heal. I did inform my doctor and he gave me the thumbs up stating that Nature can work wonders.
After taking the herbs for about 2 years and I was functional again! I changed so many things in my diet, along with the products in my home such as the shampoo and cleaners I used, and over time my holistic nutrition journey kept evolving. There were testimonies from other patients and the things they were experiencing and trying, any information that could help me get back to somewhat of the person I was before this disease ravaged me.
As I continued to study natural nutrition, herbalism, autoimmune conditions, and anything that could help me stay who I wanted to be. I was well enough at this point to be part of the Search and Rescue Team for 9 years, hold physically demanding jobs, and maintain my “country” way of life with the animals and family. Yet I remembered that anything that would alert my immune system could send me back to that horrible place where I started.
A Healthy Lifestyle is an Integral Part in the Management of Autoimmune Disease
Our bodies have strayed so far from nature and the food she has given us. Fast-paced lives have robbed us of paying attention to what our bodies are saying. Disease, weight balance, stress-related injuries, sickness, and mental fog are all messages that our bodies are sending to let us know something isn’t right. One of the biggest lessons I have learned is that we need to re-learn how to coexist with nature to be at our optimum potential. There are things we have no control over, but what we do have control of is ours alone. I know what my body responds to in the way of food. Normally I avoid these triggers, but sometimes I go for it.
I have learned that I will have some sort of reaction, but I know my body well enough to adapt to these situations. At 65 years old, have lots of tattoos, I have been a PE Paraprofessional, worked at a monkey farm carrying 40-pound bags, ride my horse, hunt and fish, swim, dance, and walk, all because of what I have learned and practiced since my diagnosis. My muscle tone had parts of it destroyed by this disease, and I have residual problems, but I have accepted what they are and worked with them, and most of the time (I believe that denying yourself is harmful) I get through them. My disease is unpredictable and always there, it is what it is. But I’m alive and doing most of what I want to do.
Your Symptoms are not “just in your head”!
If your story is like mine, I know that seeking help from others can be hard, but fight anyway! To try to explain! Get them to understand what you are feeling, especially what is not apparent to the naked eye. Do this until someone finally hears what you’re saying and believes you. It’s not “in your head” and advice like “take some ibuprofen” probably isn’t the solution, what you are experiencing is real! Keep showing up for yourself by showing your uncomfortable signs and symptoms. We don’t choose this path, but it is a valuable lesson in learning how to be the best you can be and that is enough – Just never give up!
Through all of these years with this disease, I have made many discoveries that I am thankful for. I earned my Bachelor of Science in Holistic Nutrition, I am a certified Autoimmune Holistic Nutrition Specialist, I am a board-certified Holistic Health Consultant, Certified Natural Health Practitioner, Certified Holistic Nutrition Practitioner, Certified Spiritual Guide, Ordained Whole Health and Healing Minister, and certification in Holistic home and family.
Conclusion
Like many Natural Nutrition Practitioners, Susan’s story isn’t an isolated case. Many practitioners get into Holistic Nutrition, Herbalism, Yoga, or Fitness because of their own health journey. This story was shared to inspire new and practicing nutrition coaches to share their stories as often as we can so we can ensure that this valuable knowledge is passed on to others who need to hear it most. We want to say a special thanks to Susan for sharing her journey.
Question: Did you have a similar health experience? Leave your comment below!
Hi, my name is Susan (Sue) Ducheneaux, I am the mother of 3 children, 2 boys and 1 girl, and grandmother to 3 amazing grandsons. I recently moved back to Northern Wyoming from the coast of Texas where I have lived for the last 2 ½
years. Prior to Texas, my husband, myself, and my family had lived on the Eastern side of Wyoming for over 36 years. I am currently an elementary SPED paraprofessional. My knowledge and experience with Holistic nutrition began with years of personal experience and my spiritual beliefs. Throughout my years, I am 65 years old, I have had the privilege of many life experiences, some good and some not so good. I will always strive to improve myself and hopefully, give guidance and courage to others.