This week, I’m in my second of twelve IVIG treatments. Five days in a row, six hours a day, I’m receiving IV Immunoglobulin therapy. It’s really hard on my body. I’m writing to you with an IV in my right hand (I was too out of it to take the practical idiocy of this into account- I’m a “righty” and I can’t get my hand wet.So I’m filthy) an IV in my left arm, and some kind of head, neck, and back pain that has kept me up too many hours of the nights/ early mornings. I am mostly miserable. Considering the circumstances, for this weeks post, I’m going to take my business partner, Eva Fischer’s advice: “It’s OK to Can’t” and keep it simple.
Here is my tailor-made list of simple and affordable healing “musts.” Just to be clear: this is MY list- formed from 2 1/2 years of experience and many wise suggestions from fellow “spoonies” and some doctors. I’m simply sharing my experience. I’m not suggesting it’s the only way…I’m suggesting you create your own list.
But I’m definitely right on all accounts. 🙂
10. Sunshine: Vitamin D is an essential aspect of healing, and, it’s way more powerful to get it from the sun than to take it in supplement form. Fortunately, for those of us located in sunny parts of the world, it’s easy to step into a pool of sunshine and stay there for fifteen-thirty minutes. I understand it’s not that convenient for everyone. Regardless, I urge you to set aside time to let some of your skin touch the sun. It will lift your spirits and enhance your health. It’s important not to wear sunscreen. Sunscreen blocks vitamin D production. You can produce up to 25,000 IU of vitamin D between 15- 30 minutes of sunshine depending on other factors (skin tone, time of day, etc… ). Another quick FYI: glass blocks all UVB so, although it might boost your mood which is great, you will not get vitamin D if you are behind glass (glass= window).
9.Lymphatic Drainage: AKA: Exercise. I don’t use the word “exercise” because, if you’re like me, that word suggests something way more aggressive than what you might be capable of. Whatever it is you’re healing from will likely determine how much and what kind of movement you can do. It’s an individual quest to find the exercise that’s right for you. Regardless, I try to strategically move at some point in the day to assist in draining my lymph system. Light walks are a good call- you can even double fist it and get your sun time this way! Riding a bike (stationary or not) is amazing for draining, and usually really nice for my body. I often lay on my back with my legs up and pedal in the air. That is an effective and gentle way to move without causing too much strain on my body. It also ends up being a core work out which always makes me feel stronger and happier. If you have a trampoline, use it! JUST MOVE A LITTLE.
8.Probiotics and stuff: Find your necessary supplements. I think it’s safe to say that probiotics are good for everyone. Your immune system starts in your gut and probiotics keep your gut healthy- it’s really simple. Take them in the morning on an empty stomach and at least 30-50 billion flora a day. If you’re on antibiotics wait AT LEAST two hours between abx and probiotics as abx just kill the good flora you’re taking. I also take magnesium, coQ10, Curcumin, esterC, L-lysine, and B complex daily among others. If you do some research you can find out what the best supplements are for you. God knows, I have tried them all , but it gets expensive and, so, I’ve found my most helpful ones and stick to them. It’s also important to give your cells a break as they get over saturated. Sometimes, I just take a day or two completely off.
7.Breathe: That’s right! This annoying word. This can come in the form of meditation, reading, watching TV, doing EMDR (I highly suggest the incredible EMDR anxiety release app- $5.00) or just sitting still and breathing. It’s so important to take deep breaths and avoid stress getting caught in my body. I’m no breathing expert. I forget to breathe A LOT. I take my own suggestion to breathe usually around 3 or 5 am when I wake up in pain and with overwhelming thoughts about the future. I put a hand on my belly and just keep breathing into it- I keep returning my attention to whether or not I’m breathing until I fall back asleep. Take time, as often as possible, to take deep breaths and move your anxiety through instead of letting it get stuck. Stay present, do one thing at a time, and keep it simple. Stress IS never helpful or worthwhile. Sometimes, the greatest action I can take for my well-being is to breathe. Hint: Kundalini Yoga will keep you breathing 😉
6. Rest- STUPID REST. I have a negative physical reaction to that irritating word. But, alas, it has been made royalty in the well-being courts, and I bow down to it. I avoided rest for far too long, and I blame my restlessness for keeping me sick sometimes- so now, I try to take it very seriously. I turn off for the night, and make sure I have a full 8 hours of being in bed even if I’m not sleeping that whole time. I’ve found, I also need to take time midday. My personal goal is to take an hour every afternoon/ evening where I turn my phone off and do nothing but read, watch tv or lay still and breathe. On top of that, I need one FULL DAY OFF per week. That means, I have one day where I do not put any pressure on myself to accomplish ANYTHING. I understand that not everyone is lucky enough to be in this position (those of you with children). For those who can, I suggest a full day of expecting nothing of yourself but to eat, hydrate, take your supplements, and enjoy a day of rest! I’ve come to LOVE these days. From the girl who had a panic attack every time she was forced to sit still, that’s pretty incredible.
5. Gratitude lists- I don’t want to speak for everyone, but I can always find PLENTY to be grateful for. That doesn’t mean we’re not all allowed some moments of sadness, anger, and even self-pity. SURE! Go for it! It’s all just practice. I’ve been practicing writing gratitude lists for almost a decade and the result has been profound. I was once such a complainer, and I rarely complain these days without a whole list of positives birthed from the very same place the complaints come from. Being sick can get really dark for me, and I’d say gratitude lists are the flashing lights that keep me moving through the tunnel. Get it? The light is not at the end of the tunnel- it’s here and now…when I’m grateful.
4.Joy- Find SOMETHING that lifts your spirits and do it! Like gratitude, I can often, if not always, find some moments of joy in my day. Prior to writing this blog (which has been my recent source of joy), I picked up my camera and took a photo a day for 365 days.I can’t tell you how many times the simple act of taking some photos changed the whole of my experience for that day. Now, during the hardest time of my life, I have these photos to look at…something fun and positive came out of that shitty year. Whether it’s watching cartoons, listening to good music, dancing, singing in the shower, or working on something I believe in, my cells crave joy, and I feel healthier and lighter when I give it to them.
3. Toxic free- I Removed as many toxins as possible. I replace any harsh toxic cleaners (bleach. yuck) with more natural cleaners (better yet just use baking soda and vinegar). I use aluminum free deodorant (try thai crystal- it does work!) I use a natural toothpaste, natural hand wash, dish cleaner, body soap, laundry detergent, and removed all forms of mercury from my life (fish, fish oil supplements, amalgam fillings). There are so many pollutants and harsh chemicals around us (and in our food) so I do my best to control what I can. I never, ever saw myself going this route, I was a bleach using, aluminum using, don’t give a fuck human. But, I’m on that mission for total wellness now 🙂
2.Eat- Unless I’m doing a cleanse of some sort that is good for me, I don’t stop eating nutritious food! Sometimes, our appetites suffer as a result of being sick, and I’ve certainly been there. When I cut all of the crap out of my diet and I was so sick, I had a really hard time staying on top of eating. I suddenly dropped 10 pounds which is a lot on my small frame. I started just force feeding myself three nutritious meals a day. Now I happily consume food. I seem to be hungry all of the time which is great news! My daily menu generally consists of this: Celery juice on an empty stomach, followed by a glass of water with my supplements, followed by coffee,then a smoothies of 2 bananas, 2 dates, a cup of wild blueberries and some sort of protein that I can take my xenostat with. Lunch is a giant (mostly raw) salad: I use two different kinds of greens, cucumber, celery, radish, hemp seeds, a full avocado smashed with raw garlic and lemon, an engine 2 black bean burger and Bragg’s organic olive oil. Dinner is usually a toss-up, but I tend to go for something like rice, beans, sweet potato mash or cauliflower mash with sautéed snap peas and a turkey patty. Obviously, I’m on an extremely strict diet. For snacks, I eat nuts, seeds, fruit, veggies, lara bars, go raw Spirulina crackers, and gluten-free toast with coconut oil. I urge you to find the foods that are most important to your well-being and eat them everyday.
1. Stay Hydrated- OH! My favorite. My mother calls me the “hydration bully” for a reason. I average 2.5 liters of rehydrating fluids a day. It’s much harder for infection to live in an alkaline body, and one of the best ways to alkaline is by drinking water with citrus- for me, usually lemon or lime. It’s also super important to have a good filtering system! Green juices are also hydrating especially straight cucumber juice or celery juice, and then, there’s the beloved coconut water! I make sure to buy organic coconut water with NOTHING ELSE in it and I usually squeeze some lime into it. Then there’s herbal teas, and making your own ginger tea which usually makes me feel really good. I just heat up some filtered water with sliced ginger in it and let it steep. I add lemon or cayenne if I’m feeling extra spicy. It’s SO important, especially if you’re participating in ANY detox methods to drink loads of water.
Speaking of hydration, I’m currently drinking coffee. I’ll be on my couch watching “A Big Fat Greek Wedding” until treatment is over. We’re all just doing our best.
With Fun and Love,