Life is hard with Sjogrens Syndrome.
When you’re dealing with a disease like Sjogrens Syndrome that is constantly changing, traveling and effecting various parts of your mind and body at different times, waiting is the hardest part of living. The realization that Sjogrens Syndrome is for life. Never knowing when the goods days will go bad. Never knowing what part of the mind or body will be next. It’s like living in a war zone in constant anticipation of the next explosion, never knowing when it’s going to strike. On the edge of your seat, on the edge of life, that is what Sjogrens Syndrome is.
We are what we create.
As I write this, I have tears welling in my eyes. The reality is hard and there are days where I fight for more courage. I will not lose hope. I will not give up. I have made great choices with my health which are fuelling my fight against Sjogrens Syndrome . I am not writing this for sympathy. It’s OK to cry. We all should allow ourselves to free our emotions and crying, like writing, can be very cathartic. I am writing this so you know, I understand. You’re not alone. We are in this fight together and you can live a wonderful life with Sjogrens Syndrome.
Hope will not breed hopelessness.
For those who do not know, I have an autoimmune disease known as Sjogrens Syndrome. There is no cure, it’s progressive and pervasive. You can go through long periods of remission and then without warning, a new or old symptom smacks you in the face, or mind or other body part. It can mimic thyroid issues, lupus, Fibromyalgia or Celiac but, is also often diagnosed along with those other autoimmune diseases. Sjogrens Syndrome effects every person differently. It can come with any combination of dehydration, chronic fatigue, dry eye, dry mouth, dry skin or neuropathy. The biggest challenge for me has been as soon as I think I’ve figured it out, it changes. Leaving you feeling defeated with the frustration of having to start all over again. As an outsider, you can’t see it. We all look “fine”. Even now, it’s hard to explain. I have never been tested for anything else because, frankly, for me, it wouldn’t matter. How I approach treatment would be the same.
I have been searching for clues to understand why Sjogrens Syndrome happened to me…
I’ve been searching and learning about Sjogrens Syndrome for over four years. I reached a point in my life where I was no longer willing to give in to the pain and the fatigue. This will not be my fate. I do not have to feel this way. I abandoned the excuses of age and the “disease” and searched for the truth. A truth I’ll share with you as I continue my journey learning more at every turn. I won’t always have all the scientific mumbo jumbo or statics. My mind looks at relationships and correlations. I am not a doctor or a nutritionist. I can only share what I found, the effect it’s had on me and my solutions. Do the research and when you start to look back at your child hood, the pieces will start to come together.
Gluten and sugar are evil.
Dairy can have it’s own issues, but at the root of what I’ve found is gluten and sugar. Hydrogenated oils and other GMO products add fuel to fire but that’s not where I found it started. Leaky gut is one of the prevalent conditions plaguing people today. When I go back to my child hood, I have always had stomach issues. I was told I had a “spastic” stomach and it was basically ignored. I still have no idea what that really is. I also craved carbs / sugar. Fatigue set in during my late teens. I was active in sports, worked part time and was going to school. In college I worked full time and went to school full time. Of course I was tired. My blood work wasn’t always great but, I looked “fine”.
Our bodies have the ability to heal itself.
Yes, we are extraordinary works of art. They key is allow our body to do its job. I was sabotaging it. Grains were not something the human body relied on as food source. Regardless of what you believe about the “primal” food print, gluten itself is not the same as it was decades ago. As a result of environment factors, depleting nutrients in the soil and “modifications” made to ensure its survival, the molecular structure of gluten has changed significantly from its ancestral roots. It is the expression of the genes in wheat and its interaction with human genomes which wreaks havoc on our body. No wonder our body is confused and starts to attack itself. It was never intended to digest this type of food.
The body is always working to keep us in homeostasis.
To keep things in balance. What we’re feeling is our body trying to pull us back in line. Sugar puts our body in a frenzy in much the same way. What have we been told? Fat free is the way to be. So we ingest tons of artificial sweeteners under the guise of “no calories”. Our body treats it the same and still produces the same amount of glucose. How do you feel after riding roller coasters all day? A bit dizzy? Not so stable? Bingo, your body is no different. Not to mention, sugar has been proven to be just as addictive at cocaine. Keep in mind, natural sugar is still sugar and you really shouldn’t have more than a tablespoon of natural sugar a day. Carbohydrates, by the way, plays into that sugar addiction and there is evidence of highly addictive qualities of wheat as well.
We need to allow our bodies to heal.
Stop sabotaging habits and fuel ourselves with real whole foods in the way nature intended. We need to help our body bring us back into homeostasis. How do we do that? Here’s what I’ve discovered…so far. Yes, I use Paleo as a framework for food preparation. You would think, that was a result of my research, but to be honest, I started eating “primal’ before I knew what Paleo was. I learned to listen to my body and with the help of muscle testing to confirm my suspicions, eliminated foods causing chaos in my body. Trust me, I didn’t’ want to hear I needed to say goodbye to French fries, corn, chilies or tomatoes (that’s a short list) My favorite food was Thai, Indian and Mexican.
Intermittent fasting is where I started.
If you’ve read our article on the five two diet, you’ll know the reason we chose that lifestyle three years ago was about longevity and not weight loss. Yes, you will lose weight. It’s a nice side effect. The 5:2 diet allows your body the time to repair damaged cells by lowering IGF-1 levels (insulin like growth factor 1). We have high levels at birth and during our growth period as part of building new cells through splitting and duplication. When we run out of food or bodies switch from building new cells, by lowering IGF-1, to repairing existing ones. For example, we all have a certain amount of cancer cells that exist in our body. Whether they get ‘turned on’ or not is dependent on multiple factors but that’s for another time. What’s important here, is to limit the duplication of the cells and encourage their repair. Remember, this is about giving your body what it needs to do its job.
There is an alternative to anything.
If there’s a will there’s a way. I am not a cook nor like to spend time in the kitchen cooking or cleaning. The truth, living without, for so many years, prevented me from changing. I had all the excuses. I don’t have time, it’s too expensive, it won’t taste good. I’m “mostly” gluten and dairy free. Well folks, your body doesn’t’ acknowledge “mostly”. Sjogrens Syndrome does not accept half measures. If the “evil” is there, it knows and treats it no different than if you ate the entire pizza or chocolate cake. The truth, I was forced to find alternatives when I had to eliminate dairy from my daughters diet. The truth, there are some really bad dairy free alternatives out there. While it served a purpose, the choices didn’t facilitate healing. The truth, I chose to say no to the pain. I chose to say no to a future of medications, doctors’ visits and debilitating and/or terminal illness.
I am living with Sjogrens Syndrome and it’s hard.
I will not give up the fight. I take advantage of every training, white paper and article I can find to learn more every day. Food really is nature’s medicine. We need to give our body a fighting chance to do its job. The message in the video “We are all ONE“, is intended to be about mother nature. For me it reflected what we do to ourselves. We need to stop pushing the limits and take responsibility to preserve what we have and allow our body to live in harmony with itself. I am not perfect. I have and continue to make progress. I chose this profession, because I want to help others improve the quality of their life. I want and will share what I’ve learned about Sjogrens Syndrome with you. I will show you how to make better choices for your life. There is a better way. I am living it!
I want and will share what I’ve learned about Sjogrens Syndrome with you. Click To Tweet
In closing…
Thank you for allowing me the time to share my thoughts. Life with Sjogrens Syndrome is hard. Many will not read to this point, for those who do, thank you. I have included a few resources if you like that sort of thing. It is, by all means, not an exhaustive list. Having a strong and positive support system is vital to our health. I am fortunate to have the support of my husband and children. If you don’t, I invite you to join our community of support. The door will always be open, you are not alone with Sjogrens Syndrome.
Wishing you good health for life,
Margie
Sources:
http://www.einkorn.com/einkorn-nutritional-facts/
http://authoritynutrition.com/6-shocking-reasons-why-gluten-is-bad/
http://instituteofhealthsciences.com/the-intermittent-fasting-diet-52-diet-by-caroline-noonan/
https://thefastdiet.co.uk/forums/topic/help-with-inflammation/
and swished it in my mouth for up to 20 minutes a day followed by brushing my teeth. It’s not as bad as it first sounds, and you quickly get used to the different sensation that having a tablespoon of oil in your mouth brings. I started with 10 minutes and by the end of the first week was up to 20 minutes. It has become part of my daily morning routine.