GLOW

It has been a long while since my thoughts have turned to this space, and for the most part I am grateful for that. 2009 & 2010 required me to spend most of my days researching what I could eat, planning what to eat, shopping for that food, cooking and experimenting in the kitchen, and finally, eating. My health was such, and my food sensitivities so plenty, that this was necessary for a long while. In order to maintain some sense of sanity, I looked upon it as a creative task, and often a spiritual task. I would work slowly, thoughtfully, often listening to Alan Watts or some sort of meditative music, and trying to focus my whole being on healing. This, naturally, gave me little time and energy for my true creative loves, and that, naturally, left me feeling unsatisfied. Come 2011, for the most part, my gut has healed enough, and my knowledge base is steady enough that my diet has become more low-maintenance. This is all relative, of course, and I still have to bring food with me to dinner parties and on trips, but it is all down to more or less of a manageable routine. Even more than this, however, is the fact that this year I have sadly discovered that diet & herbalism can not heal everything. I have gotten to a point where I have learned to control everything I can, and the rest is out of my hands. So that, dear friends, has been the reason why you have not found me here.

I find a great deal of spiritual guidance from the symbols in the Tarot. In a workbook of mine, it has a numerological formula for finding which card represents the year you are in now. At the end of 2010, when I added up the numbers and found that the Hanging Man was the card for 2011, I was crestfallen. I felt momentum, I felt anticipation, I felt, more than anything else, a feeling that there was absolutely no way in hell I could handle another year without answers, with chronic pain and illness, and all of the crap that comes with it. The Hanging Man traditionally represents many things that I was ready to welcome, the consequences of your actions coming to fruition (both positive and negative) for example, but it also represents surrender, sacrifice, a period of inactivity, a recognition of the negative things that we might be hung up on. (See more here.) I thought that I already lived that. And I also thought that when I was diagnosed with Lupus in May, after almost a decade without answers and 4 months of the most extreme fatigue I'd had in years, that the card had been proved irrelevant. I would get on a raw diet, I would try Plaquenil, and I would start regaining my life back.

Summer passed, my fatigue became worse, I became extremely sensitive to sun and light, I would have bouts of numbness and inability to speak or move, and I had started to get these "ticks" as I called them, which were mild shakes and movements of my head that embarrassed me quite a bit, and so I told no one of them. 

But in August, when meeting with my new rheumatologist, during an appointment which was the most thorough and lengthy I had thus far with any doctor, I was told that I in fact did not have Lupus, that my auto-immune issues, while present in Sjogren's and Raynaud's, were mild according to my blood work, and that instead, he thought it very likely that I had a mild form of Epilepsy. I was shocked. So happy was I to have a doctor who finally cared and listened, but so helpless did I feel to know that I was starting from scratch again, with a suggested diagnosis that seemed so far from anything I had conceived. I thought of the year so far. I had only regressed. I was weak and without answers. The Hanging Man seemed relevant again. I tried to pay attention to the lessons I could learn from it.

The next day, while having ten vials of blood drawn for tests ordered by my rheumatologist, I blacked out momentarily, and fell into a violent and extended seizure for the first time in my life. I was absolutely terrified. I could not make this stop with a cup of tea. I could not prevent this from happening by avoiding carrots or capsaicin. This was happening in my brain, and I had no control.

Four months later, the seizures have become a regular part of my life. These "ticks" as I once called them come in varied forms, are usually fleeting, but almost always near the surface, just begging for a trigger to send it over the edge. Complications with insurance have delayed tests and doctors visits, and made for a very frightening autumn with some more severe episodes, but this month I will finally have the EEGs and appointments I've needed, and I am feeling like change may finally be at my doorstep. 

One of the most challenging lessons that I've had to learn, and continue to learn, is the necessity of asking for help, and for properly articulating my needs to those around me. This is a daily challenge, and you'd think that with something like a seizure that it would be pretty straight-forward and obvious that help is required, but this has not been easy for me. I am sharing all of these details of my life with you now for two main reasons: to tell those that are friends and family members to me that I need you, and that I am so grateful to you for how you have taken care of me and taught me that it is okay to be helpless sometimes, and to tell those of you that I don't know that it is absolutely okay for you to advocate for yourself. Are your doctors not listening to you? Do research, work with your insurance company, and get a new one. That one doesn't work, either? Get a new one. Make phone calls, get letters written so that you can see those specialists that aren't in your insurance network. Call your friends and family, and be honest with them about what is going on, and be patient and accept their honesty when it is not easy for them either. Sometimes we can make the mistake of assuming that our needs are obvious, but everyone handles trials differently, so communication is key. Most of all, know that it isn't your fault when you can't make it go away. By changing my diet and learning about herbalism, I rid myself of chronic migraines, decades of IBS troubles, seasonal allergies, and a number of other pains and difficulties. I am so grateful for those improvements. But we have to accept sometimes the humbling power of disease. It is a teacher, it is the alchemist's flame, it is, at times, completely out of our control. 

I hope that this year, which for me is represented by the Death card of the Tarot (which is the bringer of rebirth, the (sometimes painful) shedding of those things that no longer serve us), will bring healing and positive, cathartic change for those of us in need of it. My love to all those who are similarly struggling, have so in the past, or may in the future.

RAW ZUCCHINI & SUMMER SQUASH "NOODLES"* WITH AN HERBED LEMON & COCONUT BUTTER "CHEESE", LIGHTLY SPLASHED WITH RAW COCONUT AMINOS

 I've been spending a great deal of time (perhaps too much) researching Lupus since my diagnosis. I've wanted to be informed when attending my follow-up appointment with the rheumatologist (as he sadly didn't offer me with many resources), and have wanted to expose myself to alternative treatment options that an allopathic doctor would not typically suggest to me. The most commonly advocated alternative treatment for autoimmune diseases is an appropriate diet that eliminates food sensitivities and common toxins. Guess what? I have a head start. My intuition has clearly served me well in that department. Besides eliminating gluten, however, a diet largely made up of raw foods seems to be the most commonly talked about diet, which according to various anecdotal stories shared via the web and to me personally, can alleviate many of the symptoms and even lead some to remission. This gives me great hope, although I am keeping that hope in check with the understanding that every body is different; what works for one may not work for another. Let me be clear that Lupus is potentially a very serious disease, and therefore alternative treatments for it are highly controversial. I have the advantage of only having mild Lupus at this time (in my mind thanks to the dietary changes I've made, though I will elaborate on that more at a different time), and consequently have some leeway to experiment. Summer is an excellent time to eat raw food, as well; I am more than happy to rarely turn on the stove. I'm a little bit more skeptical about how this will work out in a cold New England winter, given that I also have Raynaud's. Anyone with experience in that department, please share your thoughts in the comments!

RAW SHAVED* ACORN SQUASH WITH MINT, SHAVED MACADAMIA NUTS, COCONUT BUTTER, LEMON, OLIVE OIL, LAVENDER BUDS & FLEUR DE SEL

So, have I noticed any improvements since making the shift? Hell yes. My cravings for starch and sweets have decreased significantly. My portion control (typically something I really struggle with) is leaps and bounds beyond what it has been. Also, when I've made exceptions to my diet by indulging in typically forbidden foods, my reactions are far less severe, and I recover much more quickly. Want an example? I'm eating fruit. Let me put that into perspective for you: with the exception of lemon & avocado, I haven't eaten fruit for almost 2 years. I've been following the recommendations of the Body Ecology Diet and eating it only in the morning and always by itself, but I've made some exceptions to that, as well. Papaya, pear & banana have been recent trials. Want another example? Today, my husband and I went to Kickass Cupcakes, where I indulged in not one, but two gluten-free cupcakes. (Sugar, eggs, flours, oh my!) So far, I'm suffering from some mild brain fog, but otherwise I'm okay. I followed the trip up with some raw celery to help move it along, and some stevia-sweetened sparkling mineral water with added peppermint oil to soothe any possible inflammation.

RAW SHAVED* DAIKON & EASTER EGG RADISHES WITH PARSLEY, LEMON, CHOPPED RAW HAZELNUTS, SEA SALT & OLIVE OIL

I would love it if you would share your thoughts on this approach. I am still holding off on fulfilling my prescription for Plaquenil at the pharmacy, but beginning to warm up to the idea. How do you treat your illness? Have you improved from an autoimmune disease through diet? Have you tried the raw food diet and improved your health? Have you recovered? Or are you one of the many who feels it to be a naive and mislead approach? Please weigh in.

In the meantime, here are two resources I have taken advantage of:

Shares her experience of putting her severe Lupus into remission on a raw food diet.

I'm at a bit of a loss as to how I should begin this post. It has been so many years, at times I could say my entire life, that I have been dealing with inexplicable and troubling symptoms without a diagnosis from the many doctors and specialists that I've seen. It has now been a little over a week since I visited a rheumatologist for the first time and was quickly diagnosed with Lupus, an auto-immune disease in which your body's immune system becomes over-active and attacks its own tissues and/or nerves, precipitating a great deal of symptoms from mild to life-threatening. My diagnosis happens to coincide with Lupus Awareness Month, so though I have been tempted to retreat into the solace of my proclaimed "break" from my blog, I thought it more appropriate for me to step out into the light for a bit and share the news. There is much that I could and would like to say on the subject, but given that the discomfort with typing much remains, I will be brief. I have experienced a myriad of emotions as a result of the diagnosis: from relief and joy over finally having a name and an understanding of what my body has been going through to, well frankly, fear over what my body is going through. My deepest gratitude goes to those who have supported, loved and encouraged me over the past decade of struggle; much love and light to you all. 

Understanding Lupus from the Lupus Foundation of America