In 2006 I started a blog about my journey with Lupus. What started appearing at the age of 13 was finally diagnosed at the age of 45. The reason it takes so long to get diagnosed with an autoimmune disease is because of how often you can go in and out of a flare, especially when you have no idea what is going on with your body.
The malar (butterfly) and discoid rashes were quickly dismissed as sunburn or a reaction to something I touched. The chronic fatigue was always dismissed as a virus even though I didn’t have an infection. And the swollen joints and inflammation were dismissed as exercising the same muscles too much (i.e. only playing tennis, not warming up, etc). None of this was true, but to my parent’s defense they didn’t know anyone in the family who suffered from Lupus. That doesn’t mean no one in the family had it.
In fact a few of my father’s cousins had it, but when no one talks about it no one knows about it. They also had Celiac Disease (CD), which I was later to find out (2005) that I had genetic links to the disease on both sides of my family. I was not officially diagnosed with it, however I was diagnosed with Dermatitis Herpetaformis (DH) in 1989. At the time it was not associated with celiac disease and so I was not tested for it. I went off gluten (internally and externally) and my condition cleared up. Being part of a clinical trial for genetic testing afforded me a bigger picture of who I was and what I had, showing me at the time that there was a link between DH and CD. We now know this to be true and that DH is just one of the many symptoms that someone with celiac disease can have.
I should put a footnote here: I am a naturopath. Today you are either a traditional naturopath or a doctor of naturopathy. My how times have changed. I would be considered a traditional naturopath. I do not practice, I never have (now you need to be a doctor of naturopathy from an accredited college to practice, if that is available in your state). I have worked part time in a few health food stores throughout my life and help friends and family best I could. I have also worked as a health couch in order to help others.
Most people don’t believe in it because, well, doctors are considered gods still so “why wouldn’t they tell me if I needed to know something“? Not realizing doctors are not educated in the body as a whole, but a body comprised of parts that can correlate to their tests, labs, and drugs.
Naturopaths are taught to be the first line of defense, teaching others how to listen to their bodies and treat it through nature, not chemicals that do more damage to the body (unless the damage to the body is so severe that conventional medicine is the only alternative). This is one of the reasons why 60 percent of those who go to naturopathy college never practice. The second is, they eventually find out it’s illegal to practice in their state. In 1958 with the big push for conventional medicine in the United States, laws were passed to make naturopathy illegal. Currently, only 21 states including the District of Columbia and the U.S. territories of Puerto Rico and Virgin Islands have licensing or registration laws for naturopathic doctors; and there are only 5 accredited naturopathy colleges in the United States (that can certify you as a doctor of naturopathy).
The first thing I learned in naturopathy college was to know my body well, know nature even better, and combine the two for overall health and wellness. Then I might never need to take a chemical drug that, while it might heal my symptoms, will do eventual damage to my organs. Being a naturopath allowed me to help myself with my symptoms throughout the years, another factor in why I was probably not diagnosed with Lupus sooner.
A year after I was finally diagnosed, my healing journey was still not looking good. I was doing somewhat better on the naturopathic remedies, but I was not seeing my body as a whole. I was not looking at it through the proper lens. I was not seeing everything it was comprised of and everything that it was depleted of. Most importantly I did not know how to feed it what it truly needed in order to heal.
During my struggle something amazing happened. A friend told me about a place not far from my home called Hippocrates Institute. An amazing health institute (non profit) that focuses on healing the body from the inside out by treating your body as it really is ~ living breathing organs that can regenerate themselves. However, in order to do that, you must feed the body high quality nutrition. If you continue to give the body the same thing you’ve been giving it, you’re never going to regenerate your body into a healthy one. Your body is depleted, it needs enough to survive the day plus enough to start healing it. While I could not afford a comprehensive program, I could afford to take some classes and learn what I needed to know to get myself into remission.
The more I learned about food, nutrient dense food, vegetable juicing, etc the more my blog switched from Lupus Girl to Lupus Girl Goes Raw. There wasn’t a whole lot of information out there about helping your body heal this way, so I took every course, went to every lecture, and talked to every person I possibly could about eating a high raw diet (76%) and how they found remission for whatever dis-ease they had struggled with.
Just because you have a genetic disease doesn’t mean it has to control your life.
I know this to be true because I put my lupus into remission and it stayed there for 12 years. Not just because of Hippocrates Institute. However they were the launching pad I needed to learn enough to help myself. It was my desire to learn and grow and help others that made all the difference.
So what happened? How did I get out of remission? In a nutshell, it was because I had emergency surgery (my gallbladder died), and when your body is forced to heal itself through something traumatic like surgery all those antibodies go into overdrive and forget to calm back down after the fact. Luckily I was prepared. I was told by my surgeon to expect a flare so at the first sight of the butterfly rash I got on top of it right away, hopped back on the high raw diet, took a naturopathic immunosuppressant, and kicked out the flare in eight months. Just about the time new stressors hit my life, which I went with pretty smoothly, until I didn’t. Seven month after finding remission again I was in a flare.
Stress is a huge factor in causing flares in any autoimmune diseased body.
Six months after my surgery I had to start looking for a new place to live. Finding a new home and moving were stressful enough, but not enough to bring on a flare. Then two months ago (July) my lovely new home flooded and two appliances died, causing chaos in my life that took six weeks to rectify. Add that to my yearly battle with the summer sun and low and behold we’re in a massive flare.
On top of having SLE (systemic lupus erythematosus) I also have Discoid Lupus. This means the summer sun can affect my skin even more, causing rashes to develop (and eventually scarring). You can have discoid rashes and not have a flare, which typically happens to me each summer. Unfortunately this summer was different and the discoid rashes on top of the stress caused a SLE flare.
Unfortunately you don’t always know when a flare is starting. In fact most people are well into a full on flare for a good two or three weeks before they put all the dots together and realize what is happening. Yes, lupus is that sneaky. For me the sudden inability to take a deep breath and massively swollen joints was the final red flag. That’s when I realized all the other things that were happening, and that I was now in a full on flare that needed medical attention.
And no, I’m not one to run to the doctor for drugs. In fact my first line of defense is always going to be looking at what I can do naturally to help my body heal. Unfortunately, my joint pain and chest/sternum inflammation (costochondritis) was so severe I knew I needed something strong to help kick start my recovery. Yup, you guessed it, prednisone. I have only had to take it two other times in my entire life, and luckily they have come a long way in how they administer it and how long you can stay on it.
After four days on prednisone I was able to think a bit more clearly again and feel the fatigue start to diminish. However it took a good week or more before I would feel capable of being remotely productive again.
So if you are wondering why this happened, it happened because life got in the way.
I reduced my amount of raw foods from high raw (75%) to a substandard level of just enough raw to keep me going (45%), I ate some beef. I had some cupcakes. I had some ice cream. And so on… So all this overload on an already depleted body was just too much for it to handle. And yes I blame myself, I should have known better, but being a human is hard sometimes and all you can do is learn from it and grow beyond it.
You see a body that already has illness is consistently loosing way more of it’s vitamins and minerals than a healthy (or even semi healthy) body does. Even when that body is in remission. So that decline in nutrition and increase in stress was a deadly combination for me. Enough to tip me over the edge.
The good news is that all my labs came back relatively normal (to me the naturopath, not the medical doctor) . I did need to increase my D3 and DHEA supplements as they were on the lower side of the spectrum, add in a new joint formula (because of my increased osteoarthritis), and reduce certain oils from my diet (no gallbladder to help process many of them), but all in all I had caught it early and was going to be able to get myself back into remission once again.
While that is all well and good, I don’t just want to get back into remission again. I was in remission for almost eight month. What I want is to stay in remission again for the rest of my life! If I could be in remission for 12 years without a problem, I certainly can do it again, now can’t I?
So I thought I would keep a journal about my journey again. A place to share what I already know, what I’m learning about all over again, and what I am learning that is new to the raw food and lupus communities. In some respects nothing has changed, and in other ways a lot has. So I hope to share what I can with all of you.
Until next time,