As many of my readers might know, I suffer from a chronic illness. Several, in fact; they really enjoy being co-morbidities it seems.
I have Ehlers-Danlos Syndrome, which is a genetic connective tissue disorder. I learned about that at the age of 42 as the result of much research and help from my similarly afflicted friends, after I never seemed to recover from a concussion I got in January of 2012.
I've been diagnosed with Chronic Fatigue Syndrome (aka Systemic Intolerance Exertion disorder).
I also have Mast Cell Activation Syndrome (or Disorder), which makes me allergic to the world essentially - I react to and can get anaphylaxis from pretty much anything: food, chemicals, environmental triggers, emotions even.
I have Degenerative Disc Disorder in my lower back, which causes excruciating back pain (thanks, connective tissue disorder!).
I have bursitis in my hips.
I have sleep apnea caused by the excessive weight gain that resulted from my concussion, on top of already being overweight when it happened.
I also have Dysautonomia/POTS (Post Orthostatic Intolerance Syndrome).
Let's see, what else? Oh! I have a hypothyroid diagnosis, but none of the thyroid meds prescribed have done a thing for me.
I have arthritis in my neck (again thanks to EDS). I'm sure I'm forgetting to mention something, but whatever.
And how could I forget my diagnosis of Fibromyalgia?
I also have been diagnosed with Anxiety, Depression and PTSD (we lost our first son Quinn in 2003 to his severe heart defect.)
So what this all looks like in my daily life is that I've gone from being a functioning regular human being (who can walk and go out with friends and be in crowds and go places like stores) to a person who is homebound, and most of the time, also sofa-bound. I can barely walk, I have a wheelchair and home health PT/OT services on order, I cannot safely go out into the world without having some sort of mast cell reaction and being exhausted for days. I have deep, deep fatigue. I cannot tolerate exercise because any kind of exercise just exhausts me, I ALWAYS feel like I am completely out of gas.
I have lost my ability to drive anywhere by myself, to cook or prepare food, to do any tasks around the house like cleaning or cooking or tidying or making the bed. I have brain fog so much of the time, much of the time I can't do anything more than stare at my computer screen, watching comedies (I cannot handle anything too serious or deep or scary, it could cause a reaction. Really.). I can barely read books because of the brain fog.
Occasionally I'll have a period of lucidity, where I can get a book read and do the budget and organize tasks that need doing, but those windows are unpredictable and definitely not frequent enough.
Barometric pressure changes hurt my body - I can feel them, they make my blood heavy and sap what little energy I have. They cause me great pan and brain fog. I also react to heat and the sun - too much sun or heat can also send me into anaphylaxis. I have tried everything I can to find healing and help my own illness.
I eat an autoimmune Paleo diet: all organic, grassfed, free-range, clean. No nightshades, eggs, dairy, grains, sugars except from fruit, processed things, additives. Whole foods. I take a crazy amount of supplements to support my body, and it's taken SO MUCH research to find the ones that work. I've tried so many others.
I've tried chiropractic and acupuncture and I regularly use massage therapy and craniosacral therapy to help my body. I do PT when I can, although I had to stop going because I was no longer able to tolerate leaving my house. Home PT is meant to start June 13th.
I've tried the meds that allopathic doctors have prescribed - compounded of course, since I cannot tolerate most of the fillers used. I am currently able to take one prescription that helps take the edge off of my pain - low dose naltrexone. Emphasis on LOW dose.
I use medical cannabis when I need pain relief, as I am allergic to opiates and NSAIDs.
I'm also currently doing The Cusack Protocol for my EDS, and I've found that it IS slowly making a difference. I've been on it a few months, and I do see a change. But I do still have flares, and there are times when I feel like I've gone back to square one. And nothing ever seems to really give me any kind of lasting energy boost. (I don't use caffeine or any artificial energy substances either).
When your daily life feels a lot more like death than life, you get to the point where you become pretty open to trying ANYTHING that you have heard has helped others in your situation. Anything that will get you a little bit closer to feeling even semi human. Living life holed up in your house, no matter how cool your house is, is no kind of life. Not without a community or friends to come over and buoy you up and keep you sane.
And because my close online friends and I spend our days on the sofa, we also spend a LOT of time researching our conditions, and trying to find the things that can perhaps help us regain quality of life. That's how I've found the things that DO help me.
I've also really learned to tune into and trust my gut - because there really ARE so many different treatments and possibilities and roads to take out there, because there ARE so many things that people say helps some (but can also harms others), the one solid way to weed through it all and to know which thing to try next once the research is done is to just listen to your gut, and follow what resonates for me, what I am drawn to. Sometimes that happens slowly, and sometimes it takes the Universe bringing something to my attention a few times before I actually see it, or realize it's a possibility for me.
A long time ago I ate a high raw food diet, for over a year, and I felt amazing doing it. I wasn't vegan - I still ate fish, especially sushi, and some shellfish and poultry. And the poultry would of course be cooked. But I was 80% at least raw fruits and veggies, nuts and seeds (though minimal). I felt pretty amazing doing that, but I stopped it because my son needed gut healing and I was drawn to the GAPS diet for that - which did in fact heal his gut beautifully. He still has the most amazing poops I've ever seen - like if you're familiar with the poop scale, his would be the top tier of "what poops should look like". I'm super proud of that as a parent, that I was able to do that for him, and it worked, and it's still working today.
After GAPS, we just naturally gravitated towards Paleo type eating, although some gluten-free organic packaged foods have definitely made it back in as well, especially since I've been so sick and can no longer cook. But in my heart I kept wanting to find a way to get back to raw foods, especially after I got really really sick and debilitated. I just kept thinking, "I know that if I had cancer I would be doing raw foods. Maybe this is the same." But I didn't have the strength or the energy or the wherewithal to be able to accomplish it.
My poor husband, who was now preparing ALL the food, was in pure survival mode. If I could give him recipes, he could probably do it, but I was honestly so brain fogged I couldn't even come up with a cohesive plan or recipes for him. And yes, I know how to Google. Yes, I have Pinterest and use it. Yes, I know full well how that all works. So if your healthy brain is thinking, "But you can just look up any recipe online," I KNOW. But THAT is how bad brain fog can be. It can make it so that you cannot even make a simple food plan or look up a simple recipe. It really really can.
But somewhere in there I'd come across this man who is a medical medium. Not the kind of medical medium like many are, where they are connecting with spirit or their spirit guides....he was connecting with something different, he said. I mean, similar but different. And he had these recommendations about what to eat for a cleanse, and how to heal your gut, and they were similar but different to anything I'd heard before. Similar because of the raw foods, but different, because there were very specific foods he advised, And also other things, like meditation (which I do) and connecting with spirit/angels (which I am drawn to but don't have much practice with).
And he has a book. A book I apparently pre-ordered, and had actually forgotten I'd bought (brain fog). The other night I wasn't able to sleep at all, so I opened up my Kindle and began organizing the books on there that had yet to be categorized, and I came across his book. I felt pulled to start reading it, so I did. And it really resonated - so much so that I was up until dawn reading, then the next day I finished reading it. And when I did, I felt the urge to text some of my friends and enthusiastically urge that they read it, too. I just NEEDED to share this with them so we could take about it together.
I'm not zealous about most things, so this is kind of out of character for me, but this time, I was just pulled. One of the things in the book that he advises doing, for everyone who is able , is to drink 16 oz of celery juice every morning, for gut healing. He also has a 28-day plan for a raw cleanse, which I read and decided that I will also do once I have the energy to make the food. But right now, celery juice is something I CAN make in the morning.
I decided to experiment with it. I thought, "Okay. I can add this one thing. Maybe I can do more later, but right now I can add this one thing. And I already have a big smoothie for breakfast, so I'm already partway there."
So I'm trying the celery juice, and I'm journaling it to keep track of the effects. Stay tuned (click the link below) to see how it works out.
Continue on to Medical Medium Cleanse: Celery Juice and Raw Food - Day 1 - to see how it goes!