11 Things I Would Tell Myself After Getting an Autoimmune Disease (Dermatomyositis) Diagnosis

Friday, December 5^th would be the day that would change my life forever.  I will never forget this day because this is the day I was diagnosed with dermatomyositis, a rare autoimmune disease. Knowing what I know now, there are 11 things I would tell myself after getting my dermatomyositis diagnosis.

There are no words for the sheer magnitude of uncertainty I felt that day and the following days after diagnosis.  Uncertainty was overwhelming because the cause of dermatomyositis is still unknown by the medical experts and there is “no known medical cure”.   As my greatest challenge and journey would begin from this point on, I would manage to find a way to recover.  When I reflect back on that day of getting diagnosed with dermatomyositis, there are 11 things I would tell myself at that moment in time.

1. Have an empowering, action-oriented mindset. In your mind, the focus should be on where you want to be at the “light at the end of the tunnel”, i.e. a person who has recovered and restored his or her body to optimal health. That vision and imagination will drive you to take small and big actions each and every day to improve your health. Focus on the end result will allow you to channel your energy towards positive change and move forward. There’s no time for self-pity. What you do each day counts and makes a difference towards recovery. You are not a victim, you are a survivor. This isn’t a tragedy, it’s an opportunity of change. This kind of empowering, action-oriented mindset will help lead you to make health decisions along this journey to recovery.

    

2. There is a way to recover.  No matter what, you will find a way to achieve optimal health. If there is even 1 person who could recover and overcome dermatomyositis (DM), you can do it too. There is a possibility and hope.  The fact is, there are dermatomyositis and auto immune disease patients who have recovered and are no longer on medications.

    

3. Unwavering faith in yourself. Have unwavering and undeterred faith in your body’s natural power to heal and the strength of your inner spirit.  Why? Because your faith will be tested like you have never been tested before.  Know that Mother Nature has designed all living things on Earth to survive and human beings are no different.  You are here living and breathing on Earth. Therefore, you have a reason to be here and make a difference in the world. You’re not destined to be handicapped or bedridden unable to be productive.  Believe that you will “reach the mountain top”, sooner or later, because each step each day will get you closer to the milestones. 

    

4. Focus on what you can control and let go of anything that is beyond your control.  Reduce stress, and avoid creating stress for yourself.  No matter how stressful an event is or antagonistic someone is, you can control how you react to it. You cannot control other people or events outside of your control.  There no need to fuss over things that cannot be changed or helped.

    

5. Strive for optimal health. Most people associate good health with no pain. However, average health can result in a life with no pain, but it may not be optimal health.  By having optimal health, your body has the nutrients, energy, and capability to overcome any health problem, whether it’s exposure to viruses and bacteria or bodily injury.  With an autoimmune disease, you are dealing with potentially a compromised immune system so optimal health can lower your chances of dealing with multiple health problems emerging simultaneously.

    

6. 80% of the immune system is in the gut. To restore normality of your immune system, find anything and everything you can do improve your gut health.  This is an emerging area of study for western medicine.

    

7. Every medical or health decision is about weighing the risks and benefits.  Every health crisis involves making multiple medical or health decisions in a short span of time.  Do your own research from credible sources and read both the benefits and risks of each decision. Make your own informed decisions on the best course of action. This evaluation approach is true for not just drugs, but also food, nutrition, diet, herbs, essential oils, homeopathy, tinctures, cannabis oil, alternative treatments, and so on.

    

8. Address the root cause, not just the symptoms.  Oftentimes, conventional medicine views immune systems of autoimmune patients are “malfunctioning”.  The conventional solution is to use only immunosuppressant drugs to control the symptoms only.  However, holistic and natural medicine views immune systems are working “fine”, but they happen to be super, hyper active. Perhaps it’s the immune system attacking all the toxins in the body? Perhaps it’s the immune system attacking aimlessly due to rampant inflammation?  Address the underlying, root cause by using anti-inflammatory diets and lifestyle changes to reduce and prevent inflammation in your body. By focusing on lowering inflammation (one of the contributing factors), you render immunosuppressant drugs unnecessary and control symptoms. There are dermatomyositis (DM) survivors who take no medications and use diet and lifestyle changes to control symptoms. You will be that DM survivor soon.

    

   • Key root causes to keep in mind:
     • Inflammation is a key contributor to causing the immune system to be hyper active. 
     • Toxicity such as mold exposure, environmental pollution, pesticides, heavy metal exposure will all contribute to inflammation and an hyper active immune system.
     • Stress and lack of sleep can contribute to inflammation and many imbalances in your body.  
     • Leaky gut is when the intestine’s barriers do not prevent toxins and foreign things and leak them directly into the blood stream. This condition creates the inflammation in the bloodstream and autoimmune conditions arise. This also indicates gut flora isn’t healthy and good bacteria balance must be restored. 
     • Cancer can trigger dermatomyositis and create a situation where you are dealing with multiple health problems simultaneously.

        

9. Craft your own answers and solutions.  No one health care provider (whether they are MDs, specialists, chiropractors, acupuncturists, or nutritionists) will have the entire answer. You will have to put together the answer yourself. You are solely responsible for your own health and your health care provider shouldn’t be the one making decisions for you, even though this is tempting in a health crisis. To address underlying causes and reduce or eliminate symptoms, you must take a holistic approach focusing on the entire patient.  Each DM patient is different and there needs to be a balance of actions targeting both short term and long term health. Some DM patients have worse skin rashes while others have severe muscle weakness. Instead of trying to “find” a solution or “waiting” for a solution, “create” your own solution that is based on what is working for you.   

    

   • Here are some action items for you.

      

     • Diet changes can help restore gut health and limit inflammation.
       • Cut out all dairy products, including cow milk, cheese, butter, because it is one of the most inflammatory foods you can eat.
       • Eliminate all refined sugar and limit any type of sugar, including carbohydrates and fruits, except green apple, lemon, lime, any type of berries.
       • Limit or eliminate processed foods as much as possible. Processed foods typically have less nutritional value and more artificial ingredients.
       • Make and eat your own bone broth soup, either made from organic, non-gmo chicken bones or organic, grass-fed, non-gmo cow bones.
       • Eat fermented foods, rich with probiotics, to boost your gut health.
       • Eat Korean seaweed soup to detox and replenish nutrients.
       • Drink veggie smoothies and increase your intake of nutrient rich vegetables.
       • Use spices, such as turmeric, garlic, cinnamon, and curcumin, in your meals to add anti-inflammatory ingredients.

          

     • Take natural supplements.  Take probiotics made by reputable brands to help restore the gut flora and balance of good bacteria in the intestines. Take various supplements for any deficiencies you may have, such as vitamin D3, omega 3, magnesium. 

        

     • Limit using drugs or medications as much as possible.  If needed, use the drugs for the short term to get the inflammation under control and lessen any autoimmune symptoms.  Immunosuppressant drugs have a huge list of side effects so lowering the dosage or avoiding them all together is better for you in the long run. If drugs are used for 10, 20 plus years, you may be dealing not just with DM, but also the side effects from those drugs.  As a result, your health problems have a possibility of proliferating rather than lessening.  Also, antibiotics are often prescribed because of the threat of getting sick from using immunosuppressant drugs. Antibiotics are known to kill both bad and good bacteria.  You need those good bacteria to restore your gut flora balance and boost your immune system. Your ultimate goal is to use no drugs, restore optimal health, and control underlying causes and symptoms.

        

     • Alkalinity makes it difficult for diseases, such as cancer, viral infections, bacterial infections, to thrive. Make your body alkaline by eating more vegetables and less carbohydrates and less red meat. For example, your entrée can have a breakdown of 70% vegetables 15%-20% protein, such as fish, chicken, turkey, 10%-15% carbohydrates, such as brown rice, sweet potatoes. Cook with coconut or avocado oil for high heat cooking to avoid making food acidic.

        

10. Get a health coach.  Find a health coach, preferably who has had to overcome their own autoimmune disease or have extensively experience working with autoimmune patients.  Changing diet is no easy task and a health coach can help guide you and execute your diet plan. The hardest challenge isn’t finding the right foods to eat, but to actually follow through with your action plan.  Health coaches can help you by providing emotional support, specific tactics to help you execute, advice to keep you focused, and nutritional information.

     

11. Join support groups. There are many support groups you can join on facebook or organization’s email listserv.  You can gain various insights from other autoimmune patients’ experiences and ask for advice or tips for any kind of treatments or solutions.  On the other hand, your own success and progress will be an inspiration for others who are struggling just as you are.

     

These are the 11 things I would tell myself after learning all that I have during the last few years of my journey to recovery.  If I had known what I know now, I would be able to engage in seeing faster progress and leap frog towards optimal health.  Never give up in the pursuit of optimal health, truth, and knowledge.