I intend to continue to write about the things I normally do, but I have things to say and want them to be heard. My journey is also a big part of who I am and I feel the need to share all I have learned.
According to AARDA, 50 million Americans have autoimmune disease. As I reflect on my journey with Sjogren’s Syndrome, there are some things I want other people to know. Remember, you should FEEL good. Trust your instinct. If something feels off, take charge of it and start keeping a small journal to connect the dots. You are your own best healthcare advocate.
If you feel like something is wrong and no one is able to give you any answers:
- Pay attention to something you have always been told is ‘a little off, but not concerning.’ For me, I realized it was my white blood cell count. My entire life, when routine labs would come back, they would say ‘your white blood cells are a little on the low side, but nothing alarming. You are probably just recovering from a virus.’ I always brushed it off. It didn’t seem to concern anyone else, so I just wanted to be on my way. When I discovered I had Sjogren’s, one of the indicators was a low white blood cell count. Having that come back once or twice is nothing, but now I realize I was always being told that. On top of that, say something. I didn’t realize it mattered that I felt exhausted, etc….at doctor appointments, I would smile and say I felt fine. I mean, nothing huge bothered me, so what was there to mention? I wrote my own symptoms off in my mind and dismissed them as part of being a mother. TELL your doctor.
- Feeling exhausted, no matter how much sleep you get, is not normal. Your body is sending you big signals to SLOW down.
- You may test negative for things like ANA (an antinuclear antibody test physicians often rely on) and other indicators of autoimmune disease, but be persistent if you feel something is wrong. Autoimmune disease is a tricky little thing, which is why it is so hard to diagnose. For example, I have a friend who kept feeling run down and overall, just not feeling well. I encouraged her to keep getting tests (the times you feel poorly are the best times to get the lab work.) After getting told several times her ANA was fine, a hematologist told her that her ANA came back positive. And guess what he said? “It’s probably lupus.” Shocker…just like the physician at Duke said to me. (Completely different doctor.) That’s when I realized, so little is known about autoimmune disease that even many physicians shrug and say ‘it could be lupus.’ (Side note: she went to my rheumatologist who said to her in the first visit, “It’s definitely not lupus.”
- If you feel poorly and are going in circles trying to figure out what you have, DO NOT STRESS. It doesn’t matter. I received my Sjogren’s Syndrome diagnosis and it was helpful to explain to myself why I felt the way I did. But when you learn you have an autoimmune disease, you learn you can possibly be diagnosed with thousands of other ones. It’s a Pandora’s box of possible future diagnoses. And then when you ask what causes it, you are told: “we don’t really know.” Because they truly do not know. But there is one thing that IS known to trigger autoimmune disease: STRESS. (One good study to reference is here.)
I recently learned about radical remission. Radical remission is when someone heals against all odds. Dr. Kelly Turner, New York Times bestselling author of Radical Remission: Surviving Cancer Against All Odds was in the Netflix documentary Heal that I recently watched. She said something that really clicked with me. Here is her bio for reference: Kelly Turner, PhD.)
Dr. Turner has conducted research in 10 different countries and analyzed over 1,500 cases of radical remission. She identified more than 75 factors that cancer survivors used in their radical remission journey. Then, she narrowed it down to nine factors that were used by almost every single one of them. Here they are:
- Radically changing your diet
- Taking control of your health
- Following your intuition
- Using herbs and supplements
- Increasing positive emotions
- Embracing social support
- Deepening your spiritual connection
- Having strong reasons for living
How crazy is that? As she points out, only two of the factors are physical: diet change and using supplements and herbs. The rest were all a mind-body connection. In my own journey, I find this to be 100% accurate. I’m not the typical person telling you, “Go Paleo! Take this! Eat that! Avoid this!” Does that stuff help? I’m sure it does! But her findings show that if you are doing only physical changes, you’re hitting only about 20% of what will make you feel well again.
I haven’t drastically altered my diet yet. I am researching which approach my family will take. I know once we do, it will be only helpful. But it feels a bit stressful to me, so intuitively, I knew to save that one for last. I have been (unknowingly) embracing the other factors on the list and the changes have been absolutely incredible.
It doesn’t take a rocket scientist to figure out stress was a big part of my life. Running a business at a fast pace with small children...stress was my life. Don’t stress….it makes you want to laugh right? All the work, the bills, the kids, the running, the responsibility…and we are supposed to not stress? Yet studies show that stress causes an autoimmune disease to trigger. And I had an autoimmune disease…so I needed to figure it out. Even though I did not think it was possible, I learned how to control my stress and it made a tremendous difference in my health. I will share more about how I did (and continue to do) that later.
For now, I want to point out to anyone who is in the position of not knowing why they don’t feel well and growing frustrated with a lack of answers: the solution will be pretty similar regardless of what your “formal diagnosis” is. Getting a healthy mind-body connection and reducing stress is going to make you feel better. It’s important to know and I encourage you to continue to seek the answers, but remember that the solution is already at your fingertips.
(And I feel the need to add, I do not sell any type of supplements, programs, or anything for your health. I sell monograms and I promise that does zero for your health.) I am sharing this because I genuinely feel that it needs to be heard.
