I am living with lupus and MS. I am in the process of being diagnosed with my 3rd possible chronic disease. I am constantly questioning authority and challenging my medical team. I am difficult.
Eight years ago when I was first diagnosed with MS I promised my running partner that I would eventually run a marathon and raise money for the disease that was having the greatest impact on my life. I already completed that marathon and raised money for MLD a disease I do not have and where I have seen improvements in research . I have seen children running and playing who would have been in hospice without ground-breaking research, amazing doctors, and brilliant pharmaceutical companies.
I have not seen the same research progress in lupus or MS. Now as I face my 3rd possible chronic disease I am training for my first 50 miler with anther goal. Don’t donate a penny to any foundation, bike ride, walk, or run until you research and ask questions. Watch this movie and begin the journey.
After meeting with over 4 dermatologists regarding my new skin condition and not getting a clear answer, I made a choice to eat off my usual plan for 5 days prior to a recent appointment. I started with chocolate covered caramels from Trader Joes and spent the next few days ordering off the normal menu of life. I ate the occasional bagel and ordered at a restaurant picking the most popular items. I did not live at Burger King or Macdonalds but I just ate like the normal healthy gluten-average individual. By 3 days the pain was in every part of my body and woke me up at night. My skin was so inflamed for the appointment that I start patch testing this week for a potential allergy.
This week I also received a message about Living Proof from a client with MS. She was a referral from an acquaintance who had heard of my personal journey. After living with MS for 20 years the pain had reached a new level until she started our lifestyle program. I don’t want to speak for her but her story had an impact on my decision to be loud and aggressive. She wanted to know why no-one had mentioned lifestyle as option to feel better.
When someone is first diagnosed with a chronic disease they look to their medical team and the most reputable resources. Lupus Foundation and MS Foundation are the first resources for anyone with my chronic diseases.
nutrition advice from reputable sources
“Next time your kids want a snack, look to whole grains. They not only are nutritious but also delicious!National MS Society https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Diet-Nutrition
Whole grains contain three parts: the bran, the germ and the endosperm (refined grains only contain the endosperm). The bran and germ help keep your body healthy, your skin glowing and your hair shiny. Including whole grains as part of a healthy diet can help reduce the risk for heart disease, diabetes and some cancers.
Barley, quinoa, oats, brown rice, or whole-grain pastas, breads and cereals are some whole-grain foods. When reading food labels, look for the words “whole grain.” Also, choose products high in fiber with fewer added sugars.
You’ve got to be a savvy consumer when buying whole grains — multi-grain, stone-ground, 100 percent wheat, cracked wheat, seven-grain, and bran usually are not whole-grain foods. Color also is not a reliable way to pick a whole-grain product. Sometimes molasses or other added ingredients give a food that nice brown color”
Should a person with lupus be on a gluten-free diet?
If you also have celiac disease, a gluten-free diet is critical. Otherwise, there is no evidence that gluten worsens or improves inflammation in any other autoimmune disease such as lupus. If you haven’t been tested for celiac disease, there is a blood test that can be done to detect it.Lupus Foundation https://www.lupus.org/resources/diet-and-nutrition-with-
I am currently med-free unless there is a medicine that will guarantee me a real solution. When I was first diagnosed my neurologist wanted me to begin Interferon, without understanding the known side-effects of Interferon, I instinctively declined,. When I had a lupus flare my rheumatologist said she would have suggested Plaquenil for anyone else, but knew I wanted to manage my symptoms with lifestyle modification. Side effects of Plaquenil. I do not have a degree in medicine but I have a lifetime with lupus and some great doctors in my past.
Eight years ago, If I had followed the advice from any reputable sources I might be shopping for a cane instead of new pair of sneakers. I did not want to insult anyone with lupus and MS by being so blunt but my health is not an accident, it is a constant struggle with daily temptations and frustrations. We need to question the the regular regime and reputable sources.
I watched Living Proof and I cried. I made my family watch the movie and I cried. I cried because it made me think of all the looks I received over the past 8 years from family, friends and my medical team. I made the decision to manage my MS symptoms with lifestyle and was met with anger, disdain, pride, love, support, frustration, and concern. I had no research to validate my choice just instinct and lifetime with lupus with a great first rheumatologist that I started to see in middle school.
This summer I am currently training for my first 50 mile run. After months of training my only real pain occurred during those 5 days of going off plan. My skin has good and bad days and can be managed with lifestyle. I wonder why I was dealt this annoying hand of chronic illness and maybe its because I need to be loud. I don’t mind if my pain leads to change. I believe in medicine and will continue to see my team of doctors. I will ask questions and listen to my body.
I want to begin to open that discussion about lifestyle and health at embody. I don’t want this to be about having a membership at embody. I don’t want this about being in this area. We want the message to be loud and clear; lifestyle heals. We need to start right away and not way for a diagnosis. We can stop this before it begins with lifestyle. We can alter the path of this disease with lifestyle.