The internet is a safe haven for people to act nasty, but it is also representative of cultural opinion at large. Based on this knowledge, I am extraordinarily dismayed that with all the PSA’s for Lyme Disease and new info circulating around it, it still doesn’t “count” as a serious illness to many people.
Of course all the details about my late stage neurological Lyme, like how I had fibromyalgia so bad I couldn’t move my limbs for a spell, were cut from Chopped, and the CO poisoning was played up because it made me look insane that a stove tried to kill me. The reactions from people, though, were still shocking: I didn’t have cancer, how could I call myself a survivor? My illnesses didn’t compare to cancer. The other two contestants had cancer, and I need to GET OVER MYSELF. Never mind that my CO poisoning– which I have very real blood work and medical records from, just like my Lyme– involved a diagnosis of Alzheimer’s by a Cedars Sinai neurologist, and the gas killed my ex’s cat, it was considered “trite” compared to cancer.
Lyme disease has a tendency to keep people laid up for years, and many simply never get well. There is no “cure,” only methods of treatment that very thankfully work for some, like me. My family and I did intensive research to find holistic treatments for both my illnesses when they each occurred, and thankfully, I successfully moved past both. My mom had cancer, and was mortified when I told her yesterday about people’s statements of my illnesses being “nothing” compared. Pain and suffering are pain and suffering, and one thing that can kill you is no less bad than another thing that can kill you.
There is simply no need, ever, to compare illnesses and minimize the suffering of others. People used the hashtag “#killerstoves” to mock my experience as minimal compared to cancer. Some even said there is no way it happened, because I’d be dead, which is clearly untrue: the ventilation problem was real, and was fixed by real HVAC people. The exposure was slow and low and not detectable on an alarm designed to only detect life threatening levels. It left me with a huge array of brain damage related troubles, all of which I have recovered from fully via holistic methods. (And most definitely NOT only with avocados, that was some fun editing.)
Our culture is rife with judgment, and social media fuels our ability to depersonalize others. We are all critics from our couches. I write this not to say I feel I was perceived unfairly (that’s a whole different blog!), but to ask people to realize that being laid up for years is a nightmare, whether or not one is sick with cancer. Period.
Besides, you know, affecting people’s lives positively and stuff, my recent speech for the Lyme Angeles Lyme disease group has gotten me to finally remember how to spell the word e-x-c-e-r-p-t. It’s one of my only spelling nemeses, and I’ve had to use it repeatedly when posting clips (aka excerpts) from my speech. Now I’m confident that I can spell it in my sleep. I’m equally confident that you will learn something from at least one of these three video clips from my speech! =)
Just because you can put it in your body, doesn’t mean you should
Let’s talk sugar, sugar
I hope you have hope
The will to survive is powerful, but there is something inside us that dwells in a far more important place than survival alone does. Survival is a start, but to be alive does not mean to be well. There is something inside us that I’ve begun to think of as the Recovery Molecule.
I’m starting to consider myself an expert at getting, and then healing naturally from, weird and controversial illnesses. Lyme Disease is gaining momentum in terms of recognition, but this past year my little family suffered from slow chemical poisoning in our home for six months, and every doctor I saw for it was befuddled. Few people survive carbon monoxide poisoning, and no research is generally done for it because there are no drugs to cure it. From winter to summer, I had severe joint pain. And for a full year, until December 2012, I lost my sense of presence, my memory, and my overall ability to think clearly. Being in my head was absolute hell. I couldn’t remember what I did from moment to moment, I couldn’t empathize with anyone, I couldn’t even handle simple addition or subtraction.
In about a month, the same amount of time it took me to catapult into wellness from Lyme, my brain recovered. (Incidentally, it was the month of December, same as Lyme, only two years later.) I utilized different modules than with Lyme, this time being helped by camel milk, lymphatic drainage massage, a supplement called Mag-Mind, and a seriously copious daily consumption of avocados, one of the best brain foods. I’ve pretty much recovered from the poisoning now, save for my metabolism refusing to return all the way and let me be as skinny as I was before this past year, but that is a minimal problem.
There is an instinct to survive, for sure. But during my times of illness, I WAS surviving. And, to be honest, it didn’t count for all that much. I’m the first one to acknowledge that when ill, I’m not exactly a positive person. People constantly said I’d be fine, I’d get over it, I would triumph, and it mostly just made me angry. They couldn’t *feel* how terrible my situation was, they didn’t understand, who were they to claim I’d be ok when I felt like life would be easier if I were dead? But there was a piece of me, far inside beyond my grumbling and complaining, that believed them. And that belief, I believe, is the Recovery Molecule. That kernel of hope so far inside, you can hardly sense it when you’re chronically ill, is as powerful as love itself. And everybody knows, thanks to Hollywood and Disney and reality, that there is pretty much nothing more powerful than love.
I don’t know if it’s love for ourselves, or those we’re close to, or what, that provides that kernel of hope. I just know that if you can picture it, and feel it, and focus on it, and freaking just BELIEVE a tiny little bit that you can be ok again, you CAN. I’ve gotten there twice now, from states that were deemed irrecoverable by professionals. And I did it without ANY pharmaceuticals. At different times I’ve been offered everything from Doxycycline to Adderall to Cymbalta to Ketamine. Screw the drugs. Screw the doctors pushing them, telling you you can’t get better without them. Make Mr. Google your best friend and do all the research you can on alternative therapies, then heal yourself better than any doctor ever could.
Thanks to my YouTube interview from Blythe Raw Live, as well as word of mouth, I get emails regularly asking for advice on how to recover from Lyme. I send people to my blogs with my protocols, and I offer any words of wisdom I can come up with at the time. But it never feels like enough, like I can do enough to save anyone else from the pain and horror of serious illness, and I want to be able to do more. This is the best I can do, sharing this idea of a Recovery Molecule. Please find yours inside. Please tune in as hard as you can to your deepest self, and find that thought that you could be ok. You will be better than ok. You will be so much wiser for having gone through this. It seems impossible, but illness is an enormous gift. It teaches us gratitude in a way we could never experience otherwise. My ability to think clearly again is a gift. Being able to breathe without pain is a gift. Find your gifts, stop waging war against your body, and make friends with your Recovery Molecule. It works, and I am proof. I am a happy, able-bodied, clear-thinking symbol of recovery, and you can be too.
One of the many gifts/life lessons Lyme bestowed upon me is CFS, Chronic Fatigue Syndrome. My playful description for CFS is, “No matter how many times I say ‘Go go Gadget body, it refuses to move.’” I swear, I spent so much time and energy just TRYING TO MOVE, only to remain stuck wherever I’d last planted myself. The term “feeling like lead” is the most perfect definition of CFS for me. When I recovered from Lyme a little over a year ago, the CFS mostly went away, along with the fibromyalgia, brain fog, etc., but it does still reappear when my body gets out of whack, and I do have to manage it regularly.
I don’t have the energy I had pre-Lyme, and might never; for one, I’m a few critical years older now, and for another, I think I had a pretty insane amount before. I worked 45-50 hours a week, minimum, in restaurant management, and was so highly active running around that I used to eat ice cream around midnight almost every night just so I didn’t lose any more weight- I was about 105 lbs, which at 5’6”, is skinny enough that you’ve passed enviable territory into the, “are you ok?” zone. After work, I’d generally go out to a bar with coworkers, and rarely made it home before 2 or 3 am, only to enthusiastically do it all again the next day.
I got my first symptoms of Lyme when I started my business, which took off at lightning speed; the first month, I worked over 16 hours a day trying to keep up with grocery store orders myself. At the end of the month, when I hired a staff and rented a permanent commercial kitchen, my body was shot. I’d gained 15 lbs (without even eating much- my thyroid just went downhill), I was spilling things everywhere, I cried frequently, and all I wanted was white flour and sugar (which, being raw, I didn’t even eat at the time). My body has never returned to the state it was in prior to March 2009, but I am elated with how well I’ve bounced back from the two horrific years that ensued after that month.
The following are what I use for energy, drive, and stamina. I don’t take all these things all the time, but cycle through them as needed, and tend to focus on whatever my current kick is. The sites they link to are where I tend to purchase them, usually because that is the best deal I’ve found.
This is the brand of ribose powder I’ve been using happily for awhile. I add one scoop to my pot of tea in the morning, and take an additional half-scoop prior to exercise. The dosage is higher than many other brands, so you only need one scoop instead of two like with others. You can also get ribose with magnesium malate for pain, but I didn’t find that helpful when I had fibro. If you take too much ribose, you may get edgy and snippy, so start slow.
This supplement is a GODSEND, and I’m not even vaguely religious. Unfortunately, this particular brand has been discontinued, but I still have plenty on hand because my mother buys in bulk, so I can’t specifically recommend another maker since I haven’t tried any. While NADH does not provide any palpable, notable energy, it gives you stamina. Once well, I still crashed by five pm daily, unable to make dinner or clean or anything after a few hours spent working. From the first day of taking 10 mg of NADH onward, I could come home from the kitchen and have a productive evening. I haven’t been taking this lately, as I haven’t been doing terribly much, but I take it regularly when I am active, or when I know I will have a long day. It eliminates my late-afternoon fatigue completely.
Organic, extra virgin coconut oil is something else I add to my daily pot of tea. I have about two tablespoons a day of it, and notice a minor increase in my energy level from it. It’s medium chain fatty acids are good for everything from thyroid function to liver function, and it can aid in weight loss (though it has never helped me with that).
Gaia Adrenal Support
This product made me feel SO good. Happy, vibrant, and alive. Sadly, it made me break out in huge, cystic pimples, so I can’t take it anymore. This isn’t the herb combo’s fault so much as the fault of my shoddy liver, and I still recommend it for those who do not have major issues with acne. I’ve recommended it to others, and it hasn’t made anyone else break out.
Spring Dragon Longevity Tea
I’ve posted about this tea before, but it’s worth mentioning again. It contains many of the ingredients in the Gaia formula, and unlike that, I don’t break out from it. The gynostemma has a mildly euphoric effect on me, and the Chinese herbs give me smooth, clean energy. One tea bag makes three cups of tea, and I drink 1-2 bags a day. In the morning, I combine one tea bag, sometimes a bag of liver detox tea also into a three-cup pot, and add one scoop d-ribose, 1 tbls coconut oil, and about 1/3 tsp stevia powder. It’s delicious and got me off caffeine quickly; the only coffee I drink now is decaf.
iHerb sent me a sample of CocoCeps with an order about six months ago, and it was the most effective marketing tool ever. Figuring it would taste shroomy and gross, I was amazed that this product tasted like nothing more than cocoa powder. Made of three simple ingredients- non-alkalized organic cocoa, reishi, and cordyceps- CocoCeps mixes fairly easily into any hot beverage (water, milk, etc), and tastes like a plain ole nice cup of cocoa. It does need to be sweetened, which the package mentions. It also contains 14 mg caffeine, so it isn’t suitable for those who can’t have caffeine. 14 mg is less than even green or white tea, so it’s a pretty minimal amount. I drink this every morning with decaf and stevia, prior to my pot of Spring Dragon, and it makes for a super healthy, delicious mocha.
I paid about $35 for my rebounder, which I chose based on the fact that it was foldable. I envisioned a product that would be similar to something on the Jetsons, and go from the size of a car to that of a briefcase. Alas, it was way more of a pain than that, and has stayed open the whole time I’ve owned it. As you can see from the clickable link, jumping up and down like a kid on a little trampoline is very good for you, and the fact that you get twice the exercise minute-for-minute on a cellular level is an added bonus. If I don’t feel up for much, I at least try to use it for a couple minutes, and I always feel better afterwards. Generally I use it for 20-30 minutes, with 2 lb weights in each hand for half the time I’m on it.
On the one hand, this stuff is really expensive pond scum. On the other hand, it is one of the most concentrated phytonutrient sources on the planet, and it’s excellent for your health. It also provides a solid boost of energy, and the one with “BrainOn” helps with clarity of thought. I use this occasionally, one ounce a day in the morning after teas and before breakfast. I tend to go through a full bottle in a short time, since it’s only good in the fridge for a week, then pause awhile before the next bottle.
Whether you are so fatigued that you can’t reach for the remote, or you just would like an extra competitive edge on life, I encourage you to try any of these products. I know I wouldn’t be able to have written all this without them!