Sex and Chronic Illness

I don’t think we talk about sex enough in the chronic illness space. There’s so much I could write about but the conversations I have with folks tend to fall into three main categories:

1. Not being able to have sex, because of pain, lack of energy, and loss of libido,

2. Figuring out how to have sex in light of health-related limitations, and

3. Communicating with sexual partners who do not fully understand limitations.

Really we could write books about this but I’m going to do my best to talk a little about all three today. I’m going to get a little personal with you all so if you don’t want to think about me as a sexual being, you can stop here and turn your attention to puppies instead.

First, there are different schools of thought around whether or not we should be having sex while we’re on a healing journey.  I’ve read in multiple places that men, in particular, should refrain from sex while they’re healing. Something about ejaculation being a waste of vital life-force energy needed for healing. I say do what you can and use your best judgment. Even if you can’t do it the way you used to, with yourself or others, it’s worth experimenting. Sex helps you feel alive and it can be an incredible pain reliever. If you have a partner or partners, it can help you feel connected and fight the isolation that can come with chronic health challenges. Of course, if you’re asexual, rock on with your bad self. Sex isn’t the only way to heal and feel alive.

Though there have been times in my healing journey when, even with the best toys, I was too exhausted to masturbate, let alone have sex, I have mostly found sex to be a powerful healing tool. Sex is the only thing that always dissipates my cluster headaches. It can take awhile for me to get me into the mood when I’m in pain, but I feel like a million bucks post-orgasm.

IF YOU CAN'T HAVE SEX THE WAY YOU USED TO

If, because of your health challenges you can’t have sex the way you used to, see what you CAN do. There are more ways to orgasm than there are spoken languages and now we have the internet so you can learn about all those ways. If research isn’t your thing, experiment and play! If you’d like to experiment with toys or get some one-on-one advice, my friend Rachel Dwight runs an online sex shop for people with non-normative bodies and does consultations. 

IF YOU CAN'T HAVE SEX

If you really can’t have sex because of pain or loss of libido, take a conscious break. It can be devastating at first and it can bring up a lot of shame, guilt, and awkwardness if you have a sweetie, or sweeties, who want to make sweet love to you. Plus, it just sucks when you can’t have sex as much as you want or the way that you want to because sex helps us feel alive.

But, pain can be healed and so can the causes of libido loss, and taking a break can be an important part of your healing journey. Remember that it doesn’t mean you’ll never do it again. (Of course, because of paralysis and other conditions, you may not be able to have sex at all. I will not address that in this post.)

 If your libido is missing in action, here are some things to keep in mind:

• You’re not alone. If you are in a support group for your illness, you will probably find a lot of others in the same boat sex-wise. If you aren’t familiar with pelvic floor dysfunction, vaginismus, or volvodynia, do a quick Google search. Folks with those conditions aren’t having a lot, if any sex, and some have bravely shared their stories on Facebook, blogs, and probably wherever you consume your media.  
• People complain a lot about loss of libido as a side effect of psychiatric drugs. Sometimes drugs are needed, I’ve taken them, but educate yourself on the alternatives like herbs, breathwork, and the Walsh Approach.
• Maca powder, ashwagandha, and cannabis are known to boost libido. If you’re not excited about taking another supplement or powder, there is cannabis lube that can be very stimulating.

COMMUNICATING WITH PARTNERS

It’s natural for your partner to be disappointed if your health challenge changes your sex life in a significant way. See if you can have compassion for them and yourself at the same time. If you want your partner to do something differently with you in the bedroom, ask! They can’t read your mind but they’re probably happy to oblige. If you try something new and it’s awkward the first time, it doesn’t mean it’s never going to work. If you try something new and it doesn’t work, it doesn’t mean another thing won’t work. Talk about how you can both create a safe space for creative trial and error with each other.

 If you’re not able to effectively communicate your physical reality to your partner, or they aren’t able to understand it, it might be a good time to get some support from a couples counselor or life coach who works with couples. I was shocked to learn recently that talking about sex is just starting to be an integral part of couples counseling. When you’re shopping for a counselor, seek out one that has training and/or expertise in talking about sex.

If you haven’t already, you might have a conversation about non-monogamy. It’s becoming more popular and it can actually bring couples closer together. It only works if all participants are consensual and happy with the arrangement though. More good info on practicing ethical non-monogamy, sometimes called polyamory, here. If that is something you’re interested in, and you’d like some relationship support anyway, know that there are counselors and coaches who have experience helping couples open up and navigate non-monogamy.

If your partner refuses to hear you or believe you and isn’t open to getting support, or becomes abusive in anyway, seek out support for yourself right away. Nothing will accelerate your health challenges like abuse and/or trauma.

The Upsides of Being Open at Work

Clients and other spoonies I meet frequently ask, “how much should I say about my chronic illness at work?” I always say, be as open as you’re willing to be without sharing the juicy details or your bathroom visits and doctor's’ appointments. That said, being open about your health challenges, even just a little, can bring up a lot of what-ifs.  What if I lose my job? What if people don’t understand and give me unsolicited advice I don’t want to hear? What if my boss and coworkers look down on me or stop giving me meaningful work? What if people think that it’s all in my head because I look fine?

Experiencing worry about these things is totally normal. It is true that sometimes people don’t get it and sometimes workplace discrimination occurs. But, being willing to be courageous and open up about your challenges can have huge upsides. I’ve helped a ton of my clients overcome the fear and reap the benefits of being open.

Based on my experience and those of my clients, here are just some of the possible effects of being open about your health challenges. Being open can help you:  

• Be more honest with yourself about how you’re feeling and what you can and can’t do.
• Get accommodations so you can work, or keep working with a new sense of ease.
• Connect with others who have your same challenge(s) and can help you find doctors, support groups, etc.
• Be yourself so it doesn’t feel like you’re hiding or wearing a mask all day.
• Save energy because you’re not always pretending or worrying that people will learn your secret, or trying to do things that are really hard for you physically.
• Ask for and receive support from people who love you and want to make your life easier.
• Build more meaningful relationships because you’re being vulnerable and courageous and people feel comfortable being those things in your presence.

Not too shabby, eh? If all that sounds good and you’re still scared to be open at work, know that that is normal and consider that, while it’s possible to get a bad response, it’s also just as possible that your employer could be understanding, supportive, and accommodating. And would it be okay with you to work in any other kind of environment?  Think about how much of your time you spend working. If you do not feel safe and supported at work, it can have a huge impact on your physical and mental health. Toxic and unsatisfying work environments can even be the cause of chronic health conditions. Still, people frequently stay in positions that don’t work for them out of fear of losing health insurance, income, etc.  This pattern is so prevalent that another chronic illness coach named Rosalind Joffe specializes in helping folks get out of toxic work environments.  It can be scary to jump ship but it can also be an extremely effective step in regaining your health.

So what does being open about your health challenges at work really entail? It’s entirely up to you. You get to decide how much you want to share and when you want to share it. By law, you don’t have to disclose anything, but even saying that you have something, without being specific, can support you in getting accommodations that might make your work a million times more pleasant.

It might seem like a stretch at first, especially if you’re undiagnosed, but it is useful to see your health challenge(s) as a disability. Under the Americans with Disabilities Act (ADA), which protects individuals with disabilities from discrimination in their place of employment (and elsewhere), you have a disability if you have a physical or mental impairment that substantially limits one or more major life activities. More here on what constitutes a disability under ADA.

And when do you tell an employer that you have a health challenge?  When starting a new job, I’ve both been upfront about my limitations and accessibility needs in the interview, and have waited until receiving a job offer to reveal that I may need special accommodations. It has worked well for me both ways. When I was first diagnosed, I waited until I said I was leaving to tell my boss but I wish I had told her much earlier. She was incredibly supportive and has since offered me part-time positions and connected me with other employers.

If you see that you desperately want to be open with people but you’re having trouble actually doing it, you may want to hire a coach to get you over the hump. It’s totally worth it.

Adventures in Spooniepreneurship

I haven’t written in a month and it’s because I was learning some valuable lessons about Spooniepreneurship, or the willingness to start and manage a business as someone with a chronic illness (people with chronic illness = spoonies).

In late 2014 I hired a coach because I was sick of burning out, and sick of being sick. It became clear in our work together that the best way for me to do work I loved and have the time I needed to take care of myself was to start my own business. I’ve always been entrepreneurial, and I’ve started a lot of things, but I usually got sick before I could see them through. So, I dove into this adventure head first but always with some doubt about how I’d be able to make it sustainable.

Some of my biggest worries early on were that:

• I wouldn’t be able to work enough to run a business when a) I spend a lot of time in bed and b) I have to spend 20-30 hours a week on self care. (I made a spreadsheet and calculated all the time I spend on self care.)
• Clients would fire me if I rescheduled them too much.
• Learning about internet marketing, taxes, and business stuff would be frustrating and mean a ton of time looking at a screen, which I hate.
• People would think I was dumb because I get brain fog, lose words, and can’t remember things.

 At this point, I’m a certified coach, I’ve been coaching for two years, and coaching is my primary source of income. I can’t speak to people thinking that I’m dumb but so far no one has fired me for rescheduling. In fact, my clients have been very supportive, and I’ve seen that I can keep the business moving even if I can only work 10 hours some weeks. I do a lot of things differently from how a non-spoonie entrepreneur might. I’ve done some pretty productive writing from my bed, for example, and I rarely work more than 3-4 hours at a time without a significant break. In sum, I learned that all those fears I had were pretty silly. My number one biggest challenge, it turns out, was my fear - and in particular, my fear of not being successful.

Recently, I got a little too stressed about my work, ignored signals from my body to take it easy, and ended up in the Emergency Room with heart attack-like symptoms. All the tests came back normal and I later learned the symptoms could have been Lyme-related or related to a viral upper respiratory infection. I had been extra tired before the incident and on either side of the ER visit, I spent a lot of time in bed, and a lot of time crying. I was scared and super sad about being sick again after almost a year of feeling much better. I also felt sure that this recurrence of symptoms would lead to the inevitable moment when I’d have to bail on my business.

I see now that this latest health adventure was really just my body, the essence of my being, the Universe, or whatever you want to call it, telling me that I needed to chill out and take everything down a few notches. Instead of listening to that incredibly useful message, I was listening to my Monkey Mind (the internal dialogue we all experience that’s full of self-doubt, what-ifs, judgment, and criticism) like it was my beloved guru. “Oh yeah, this is gonna suck and you’re going to fail, just like all those other times.” As a result, I was stressed and working more than I should have been to prove my Monkey Mind wrong. You can see how well that worked out for me.

We all have patterns and internal conversations like this that contribute to our dis-ease. Becoming a spoonieprenuer really put my patterns front and center for me. Some amazing coaches and energy healers have helped me see just how clearly the patterns not only hold me back but keep me sick. Seeing that clearly hasn’t always been a party but it has given me the opportunity to choose something different. In my case, I’m regularly seeing scarcity thinking and choosing instead to look for abundance. When I’m not worried about not having enough time or money or health to be successful, I can see so clearly what I do have.

Historically, one of my most familiar worries has been that I’ll have to do everything alone, that no one is going to help me. And, as if someone was trying to say, “oh yeah? Let me show you how wrong you are!” I’ve been showered with support in the last year. An old friend has offered me countless hours of social media marketing advice and even sent me money to sponsor some video content. Someone I met at a support group three years ago called me to offer advice on a new program. My herbalist snuck me in for a last minute appointment last week without charge. Two different business coaches have offered me complimentary access to their programs. Clients old and new have reached out to share how much they’ve been inspired by my work and to urge me to keep it up. In choosing to look for evidence of abundance instead of scarcity, I can see that people want to support me in doing this big thing and I need to allow them to do that.

Coaching is a great way to identify and overcome these patterns and it’s a huge part of the work I do, but there are other modalities too.  I had great conversations about patterns recently with energy healer Heather Smith and yoga therapist Alex Bauermeister in the first two episodes of Healcast, a series of interview and Q&A sessions with holistic healers on Facebook Live. You can watch the videos here. If you feel called to get clear on your patterns, I recommend trying a few of these modalities to see what resonates with you. Heal on!

YOGA FOR TRAVEL

I have the privilege of calling the extremely talented and ever-so-lovely multi-instrumentalist Rob Flax one of my yoga clients. He's about to go on a big tour and he asked me this week what kind of yoga he could do on the road. I put together this list of modified poses to keep his body feeling as good as possible between countless hours of traveling and playing.

Of course, anyone, musician or otherwise, can benefit from doing these stretches to counteract all the sitting that comes with modern travel. If you experience any kind of back and/or neck pain while traveling, you are going to like this post! All these poses can while traveling – on a bus, on a plane, or in a waiting area.

Many thanks to actor Glen Moore for being my model.

SEATED FIGURE 4

You can do this one right in your seat! Start with both feet firmly on the floor, lift the crown of your head and find a long straight spine. Place your right foot on top of your left knee. Flex the foot. Then you can begin to hinge forward from the hips if you have the space. You may not need to fold very deeply to feel a stretch in the back of the right hip. Hold for at least ten breaths, then switch feet and repeat on the other side. 

NECK

Put your hands in your lap and relax your shoulders. Take an inhale and on the exhale, tip your right ear to your right shoulder, stretching out the left side of your neck. Stay for a couple breaths, come back to center on an inhale, and then tip your left ear to your left shoulder on an exhale. Take a few breaths. Come back to center. Then bring your chin to your chest to stretch out the back of your neck. Stay for at least five breaths in each place. 

HAND AND FINGERS

Reach both arms out in front of you, and spin your right hand around so your palm is facing up and your fingers are pointing down towards the floor.  Wrap all the fingers on your left hand around all the fingers on your right and  gently pull your right fingers back towards you. You can bend your right elbow if you want a little more stretch. Take 5-10 breaths and switch sides. 

Then, stretch each finger individually, starting with the pinky and finishing with the thumb. Be sure to wrap all four fingers of the left hand around each finger you're stretching on the right hand. Then switch hands. 

QUAD STRETCH

Stand with both feet firmly on the ground. Grab the seat in front of you or next to you for support and grab your right foot with your right hand. Reach your knee down and back and pull your foot closer to your backside. Hold for 5-10 breaths. Switch sides. 

I've done this both at my seat on a bus (while it was parked) and in the aisle on a plane. 

If you can find the space to stand in a lunge, do that too, and hold for 10-15 breaths on each side. Make sure your front knee is over your front ankle and you have a small bend in your back knee. Always do both sides. 

FORWARD FOLD

This forward fold is also great if you can find the space to do it. 

First stand tall and interlace your fingers at the base of your spine. Reach your knuckles down towards the floor and spread your collarbones wide. Then bend your knees and fold forward. Stay for a few breaths. If you don't have the space to fold, you can still get a lot out of the interlace and stretching your knuckles down towards the floor. 

FOREARMS 

This one is probably best suited for a waiting area as it requires you to stretch out to your full wingspan. Reach your arms straight out at shoulder height. Then lift your fingertips up to the sky for a nice stretch through the underside of the forearms. Stay for a few breaths. 

Keeping your arms out, rotate your arms so your palms face forward. Then fold your thumbs into your palms and wrap your fingers around your thumbs.

Then point your knuckles down towards the floor and pull gently on your thumbs for a nice stretch across the tops of the arms.

LEGS UP THE WALL

I've only been able to do this in the airport. If you can find a mostly empty waiting area with a free wall, you can take the deeply restorative viparita kirani at the wall. I was told by another yogi years ago that 20 minutes of viparita kirani is as restorative as two hours of sleep. As someone who's always tired, this is my go to pose. It is really good for surviving delays, long trips, hangovers, or sleep deprivation.

Sit on the floor with your right hip up against the wall. Rotate your torso and legs to the right so your back is on the floor and your legs are up against the wall with heels pointing to the ceiling. Stay as long as you like but really take your time coming out of the pose. Roll on to your side, stay there for a few moments, then come to a seated position on the floor. Stay seated for a few breaths before attempting to rise to avoid a head rush. 

OTHER TIPS FOR MORE COMFORTABLE TRAVEL

• Drink lots of water. Staying hydrated will help your body feel better through all the transition. 
• Have some kind of lumbar support. You can buy a special pillow just for this but even rolling up a jacket and placing it behind the lowest part of the curve of your spine can give you some support and make sitting for long periods much easier. 
• Most airports have prayer and meditation rooms. Seek one out to get some peace and quiet, and a break from screens. It might even be a good place to put your legs up the wall.
• Bring healthy snacks. It can be hard to eat well on the road but avoiding sugar and processed foods can make a big difference in keeping your body comfortable. Plan ahead and buy your favorite granola bars, pemmican (like Epic or Tanka), or other snacks in bulk. Travel will often back you up so prunes are a great snack to keep on hand too.  : )

The Challenge of Being Idle

I’ve been coming across more and more people of my generation who are very uncomfortable with unstructured time. Like the rest of America, they are so busy most of the time that when they are not busy, they don’t know what to do. Furthermore, they worry that if they rest or enjoy even a few hours of idleness, it will mean they are being lazy, unproductive, or even worthless. Throw in a debilitating chronic illness that keeps someone in the house, in bed, or generally unable to do a lot of things, and this discomfort and worry is compounded in a huge way.  

Interestingly, it’s our inability to be still and idle that lands so many of us in doctor’s offices in the first place. We’re not designed to be “on” all the time. The brain and body need time to rest. We also know now that idleness actually increases blood flow to parts of the brain which can improve creativity, and make you more productive later on.

So what’s our beef with doing nothing? Some of it is cultural, for sure. The norm is to always be busy, and, as the second article linked above mentions, defaming idleness has been on the rise since the Industrial Revolution. Additionally, some of us millenials had very structured childhoods, full of not only school but endless sports events, club meetings, concerts, and recitals. We didn’t get a lot of opportunities to entertain ourselves and explore. And smartphones certainly don’t help the situation for any of us. Remember how people used to have brilliant ideas while they were on the toilet or in the shower? Now we take our phones into the bathroom to check e-mail or listen to podcasts. We’re allowing ourselves less and less time to space out.

I am a recovering workaholic and chronic overachiever myself. One of my college professors even called me the latter, and while I took it as a compliment, I sort of didn’t believe him and felt like I always had to be doing more to try to make the world a better place.

After burning out from a demanding non-profit job in my early twenties, I took jobs at a cafe and a farm to explore a less stressful lifestyle and take some time to get my health in order. I was surprised to find that I suddenly had ideas for poems and art pieces again. I began blogging about anything and everything, and I doubled the size of my vegetable garden plot. I was pretty happy with my downtime. Then at some point I decided I needed to get back into the career game. I took a cushy academic 9-5 job that I was really pumped about. My boss was great and so were the benefits. I did interesting work but didn’t have to take it home with me. When I stayed late I got overtime. I saved money and had time to do other things.

After about six months of suckling on the teat of academia, I began worrying again that I wasn’t doing enough. I was supporting people in learning about the Middle East but I felt like I needed to be organizing, working in the community, trying to make more change happen locally. One volunteer gig led to another and before I knew it I was the Board President of a brand new non-profit, managing 15 people and building a volunteer program, on top of my day job, at the bright young age of 26. I was always working and always saying “yes.” I went to a ton of parties in that time and felt like I was really crushing life. That is, until I got in a bike crash, got a semi-serious concussion and experienced a huge resurgence in symptoms that I later learned were Lyme and Bartonella. Interestingly the non-profit was a bike advocacy one. The coincidence was not lost on me. It took me a little while but eventually, I saw the crash for the wakeup call that it was.

I had to leave the job and the non-profit because I was sick and my brain wasn’t working anymore. That was my third big burnout. It took one more before I finally began to slow down in earnest and embrace the slower life. I took eight months off from working. I’m very grateful that I was able to do that, because I might have worked myself to death otherwise. It took a little while to settle into doing nothing. I spent my 30th birthday on my parent's couch but surprisingly didn’t feel that bad about it. I was determined to set a different tone in my next decade on the planet. I began meditating, practicing yin yoga (which was so hard but so good), taking walks in the woods when I could, and intentionally cutting down on screen time. It made a difference in my energy, my brain function, and overtime it’s taught me SO much about how to listen to my body. I now regularly take time to stare at the wall or out the window and I treasure that time. None of these blog posts would happen without it!

I’m still an organizer and an activist at heart but I see now that the revolution will not happen from a place of exhaustion. Rest and unstructured time are crucial ingredients in a healthy and well-lived life. Why not strive to march into every battle – personal and political – well rested and with a smile on our face? That is what I’m striving for.

Why You Shouldn't Ignore Your Pain

It is not normal to be in pain all of the time. If that has been your reality for years, though, it can be hard to remember what life was like without it. If it doesn’t regularly land you in the hospital, or even if it does, you might feel like the back pain, the foot pain, the cough, the stomach aches, chronic migraines, whatever you experience, is just you. That that is just who you are. And when doctors are unable to determine the cause of the pain, they can reinforce this feeling of hopelessness by making you feel like your pain is all in your head. If you’ve had this experience, you know devastating it can be. 

It is extremely frustrating not to know the cause and feel without solutions. It’s not surprising that a lot of us give up on finding the cause and do our best to ignore or push through whatever pain we are experiencing.

But let us take a moment to examine the consequences of ignoring our pain or illness. And I’m writing as a former professional ignorer myself.

At the most basic level, by ignoring pain and other symptoms you are ignoring a distress signal from your body. When ignoring the signal becomes your norm it’s like you’re perpetually living on a sinking ship. Even if the ship is just taking on water for years without sinking, it’s going to be pretty wet on board and it certainly is not going to get to port anytime soon. As the captain of this ship, you’re probably also at least a little worried about drowning or expending a lot of energy telling yourself that you’re not worried about drowning.

Worse still, pushing through or ignoring symptoms all the time makes you an asshole. Think about it. If you have been living on a sinking ship, with soggy socks and cold feet, for weeks, months, or even years, it is only natural that the chronic unpleasantness creeps into the rest of your life and impacts your career, your relationships, and your everyday interactions. It zaps your capacity to be patient, compassionate, kind, and loving, to others and yourself.

If you are living with a chronic condition and have embraced it, chances are you see the suffering in others all the time: that snappy woman at the grocery store, that man who gets unreasonably pissed at the café when his latte has the wrong milk in it.

The good news is that we can all choose a different path. Instead of being an ignorance-induced asshole, we can choose to be compassionate healers, heroes on our own healing journeys.

The first step is simply being willing – willing to acknowledge the symptoms and to do your best to get to the root of them, even if you’re not sure how right now.

So, my healing hero, are you willing?

How I learned to love solitude

Historically, I have hated being lonely and feared being alone. It started in high school and continued into my early thirties. Sometimes I felt lonely even when I was with people, and I hated that too. Some of it was related to being sick and feeling like no one had any idea what I was experiencing. I also had to opt out of a lot of social things because I didn’t have the energy. Before I was open with people about my illness, there were nights I would be home alone crying my eyes out, wishing someone would just come sit on my bed with me. I felt like there was no one I could call, and like it would be a burden to ask anyone to accommodate my special needs. I got over that but then swung in the other direction when I started feeling better.    

I’ve experienced huge strides in my healing in the last year. At some point, I woke up and had energy that I had not had in years. Suddenly I could go out again, go to concerts occasionally, and make appearances at birthday parties. I remember going to a concert in February 2016 and celebrating with my best friend afterward because I had stood the whole time and my feet didn’t hurt. It felt like a miracle. That energy was not consistent though. I had good days and bad days, and I went through a three-month period of experiencing flu-like symptoms for two days almost every week. But after feeling so isolated for so long, I seized what energy I did have and jumped on every opportunity I could to hang out with people, even if it meant spending a lot of time in bed later. Eventually, I recognized that I needed to reign in the social commitments, and I bumped up against the challenge of preserving my newfound energy. I found a new kind of anguish in having to say “no” to people a lot, sometimes at the very last minute. Sure, sometimes I felt a little guilty, but mostly I just wanted to be with people.  I’m grateful for the trips I did go on and the parties I got to attend, but as a super extrovert, it was painful to miss the wedding of two old friends, the camping trip that I had planned, and countless other events.

I decided that I needed a break from saying “no.” Even though I knew each time I said “no” that it was what was best for me and my health in the moment, it still sucked, and it was zapping a lot of my emotional energy. I realized just how much energy it was taking out of me when I left my home in Boston for two months and lived alone in Western Massachusetts. Within a couple days of being there, I felt an incredible sense of spaciousness. I had a ton of new ideas about my business and my writing. I found a new sense of ease in all my self-care practices and my health responded in positive ways.

Before the move, I’d been worried about being alone. My mom and my friends were worried too. Everyone seemed confused by my decision to step away from my rich support network. While I am extremely grateful for that network, I wanted to prove to myself that I was not wholly dependent on it. I wanted to see solitude as a gift and not a curse. I also wanted to see what it was like to isolate myself intentionally instead of feeling like I was forced into isolation. It turns out choosing isolation really works for me. I so enjoyed having my own space and the ability to do whatever I wanted whenever I wanted. I loved being able to put my supplements all over the house so I remembered to take them, and I loved the chance to go on lots of little solo adventures.  I had a couple visitors to feed my extroverted side, and that was fun, but I loved being alone again when they left. I only felt lonely on one day in the entire two month period and that was inauguration day. I was scared that day and just really wanted a hug. Luckily participating in a local Women’s March the next day cured the lonely feeling. Overall the experience was nothing but empowering.

Now that I’m back in Boston, in my house with six roommates, interacting with friends and colleagues, I’m feeling great about protecting my Noelle Time. I’m also finding a new ease in saying “no” to things because I know that I will be rewarded later for spending more time with me, myself and I. I have seen that when I take more time to be alone, I am much more present in my interactions with others and that contributes to my health, my career, and my relationships. 

After being home for six weeks, I had another breakthrough around loneliness and solitude just last week. I woke up on a Sunday feeling sad, angry, empty, and totally disconnected from my body and what drives me. There was no apparent reason or cause. I didn’t know how to be with it but it felt familiar. I found myself really wanting someone to come distract me from the icky feeling. I worried that maybe I was getting depressed again. Then I realized, this is how I used to feel ALL the time. I saw that there wasn’t anything wrong with me, I had just become disconnected and the reason why wasn’t terribly important. I also saw that what I really needed was some solo time to right my ship. And, after practicing yoga, meditating, crying, giving myself a lot of space, and getting some support from an energy healer friend, I felt like myself again, in less than 24 hours. Even though my instinct was to get someone over to fill the emptiness, solitude was the remedy.

Edited by: Kazmira Pytlak Nedeau

We Need to Stop Hating Our Bodies

There are a lot of reasons that so many people in America are sick right now. We’re overrun with toxins in our food, our homes, and our personal care products; and our cultural norms produce a lot of stress. This week I was reminded of just how problematic our culture’s relationship with our bodies is while following the news of the Trump administration's decision to roll back protections for trans youth, and seeing the negative comments garnered by this recent viral video of a woman practicing yoga while her period bled through her pants.

In this piece on NPR, former North Carolina Governor Pat McCrory seemed most worried about transgender and cisgender youth sharing showers. So a cisgender boy sees a transgender boy with a vagina. So what? Why is this so unacceptable? And is this even a realistic fear? When I was in middle school and high school, us girls censored our own bodies — no one dared to use the shower in the locker room for fear of anyone seeing us naked — so McCrory’s concern seems baseless.

Our collective fear of genitalia, menstruating, defecating, fat, and our bodies in general causes great harm. It perpetuates bullying, sexual violence, and eating disorders, among other things. More subtly perhaps, it keeps us very disconnected from our bodies and makes it very difficult for us to appreciate all that they do for us.

I believe very strongly that in order to heal from illness, we must be in loving partnership with our bodies. Cultivating that kind of relationship is a big ask when you grow up in an environment that teaches you to hate your body, that your body is something to hide and to be ashamed of.  Hating our bodies and ourselves a social norm in America. Even some of the wellness movement perpetuates it. We value self-deprecating humor and we’re taught that abusing the body is cool, whether it’s through drinking, doing extreme sports, or simply just pushing ourselves to do everything. This is a big part of why we are so sick. So many of my clients, in addition to having a chronic illness, have a super negative body image and self-image in general. They also see that they’re awesome but they believe that they’ve only achieved what they have by beating themselves up. The result of that outlook is health challenges. The body pleading for a different way of doing things.

The good news is that we can choose to be non-normative in our body relationships. We can choose love and healing instead of hate and disease. We spend so much energy covering or hiding our bodies out of fear, shame, and hatred. When we accept our bodies as our partners in healing, we can shift that energy to listening, observing, and being present to what the body wants. And when we are present, we get a lot of valuable information. It could be that a certain food is a bad fit, or that a particular exercise is really helpful. Over time, all these little bits of information can add up to a whole new way of living.

There’s no one way to get there — it takes time and some trial and error, but it is possible for everyone to build a loving partnership with their body. If you decide to be a lover instead of a fighter when it comes to your body, you’re probably going to want some support. You might meet with a yoga therapist, a coach, energy healer, or some kind of spiritual mentor. Allow yourself to try a few different paths. If you hate the first thing you try, it doesn’t mean you failed. You may love the next thing! And just like with romantic relationships, there will be ups and downs and you will question your body just like you’d question a lover. Know that that’s all normal. Keep breathing, keep listening, and remember that your body already loves you. It is doing everything it possibly can for you. So, just like the girl in French class who has a crush on you, you might give your body a chance. :)

And if you’d love some support on what to try first, send me an email and we can have a chat about it!

Not Enough Money for Treatment? Consider Crowdfunding

Here’s what we know:

1. Healthcare is expensive and not always helpful (sometimes completely useless) when you have a complex illness.

2. Alternative medicine and healing modalities take some financial investment.

3. It can be hard to pay for the treatment you need when you are sick, especially if you’re not working, or not working very much.

These truths leave a lot of people stuck. They see treatment options they want to explore but they do not have the funds to try those options or continue them once they start.

If this is you, you might consider crowdfunding for your treatment.

Before you close out of this blog post in disgust and move on, know that it is 100% normal to not want to ask people for money. Most people, aside from professional fundraisers, experience extreme discomfort at the thought of asking others for monetary support. You are not alone.

I too was once petrified by the thought of asking for money, for myself or others, and now I’m one of the weirdos who LOVES fundraising. I have done door-to-door fundraising, big event fundraising, letter campaigns, and a whole lot of crowdfunding, for myself, organizations, and people I love. I paid for most of my first two coaching trainings with crowdfunding campaigns because I was unemployed when I signed up for them. 

Here’s a little secret that I learned early on: people love to give money to support things they care about, and especially people they love. Not everyone can give, but that does not mean they do not want to.

And here’s another even cooler secret I learned from some wise coaches: When you ask people to support you, you are contributing to them. People want to support you and when you give them a clear way to do that, they are pumped!

Have you ever been to a party or at someone’s place for dinner and when you ask how you can help, they say, “I’ve got it” and then you feel awkward because you have nothing to do? And then have you experienced immense relief when you ask how you can help and someone says “you can open the salsa and put the chips in a bowl?” It’s pretty much just like that. Giving people a clear way to support you is like giving them a gift.

Chances are people who love you have been wanting to support you, even if they don’t know the ins and outs of your health challenge. And maybe you haven’t talked to them in years but you made them laugh so much at summer camp that they’ll say “yes” to anything you ask for. You don’t know this yet, because you haven’t asked, and that’s one of the best parts about crowdfunding -- it’s full of surprises!

You might be thinking, “That sounds nice but who will I ask?” The short answer is anyone who might say “yes.” Think friends, family, family friends, co-workers, former co-workers, classmates, and members of any groups, communities, or sports teams you are part of or have been part of in the past. Of course, you may want to be more choosy if you are not yet open with everyone about your health challenge or disability, or if you do not speak to your family, or for other reasons. Start making a list and see where it takes you. If can list between 50-100 people, you can likely run a good little crowdfunder.

If after doing that, if you think you might want to do this, the next step is to get clear on what you want to fundraise for and how much money you want to raise. My recommendation is to ask for a little more than what you need. This is both to cover unexpected expenses and the transaction fees for credit card payments. I recommend using the Generosity or YouCaring platforms because they do not charge a service fee. If you want to use video in your campaign, choose YouCaring. On these two sites, you only pay the transaction fee (3% + 30 cents on every donation). Kickstarter, GoFundMe, and others charge 5% on top of the 3-5% transaction fees. That’s up to 10% of your hard earned fundraised cash lost to fees. Some people think that being on one of the more well-known platforms will help them get exposure. That might be true if you were launching a cool new eco hammock company but it is unlikely to happen with a campaign for one person’s medical treatment. If you have a really great story, strangers will be inspired to give, but they aren’t going to find you because they’re browsing Kickstarter, they’ll find you because someone they know shared your page with them.

Your next step is to tell a really compelling story. Other than you just being awesome, why should people support you? What are you healing for? What are you about in the world? Focus more on what you’re working towards than how hard things have been for you. People like to invest in hope.

Then, you want to get your campaign out there to ask many people as possible using all your available communication channels. And then you will follow up, a few different times.

It definitely takes some energy, but it will be well worth it when you are getting the regular bodywork you need or seeing the specialist you’ve had your eye on for years.

If you want some more support on running a successful crowdfunding campaign, let’s talk! I’ve coached dozens of people to run successful crowdfunding campaigns and have resources to walk you through every step of the process. I offer 1 hour crowdfunding consultations to help you craft a great story, building your list, and plan your outreach so that all the people who want to give actually do. You can schedule a consultation here. Happy crowdfunding!

My Top Game Changing Healing Modalities

Especially now that I am feeling 75-85% well depending on the day, I am often asked what worked for me in my healing journey. Documenting everything would require a book, but I’ll start with what I think were the top five game changers for me: diet, coaching, meditation, prayer, and coffee enemas. I know! Eeew! Poop! I find them so great though and I’ll explain why.

My constellation of health challenges includes Lyme and co-infections, parasites, autonomic dysfunction, and mild tachycardia. I operated under a fibromyalgia diagnosis for years before being diagnosed with Lyme in 2013. I want to share this for folks who are curious. Some of it may be relevant to you regardless of what your health challenge is. 

Diet. I went gluten free and thought that was great but it was finally cutting out all the other things my body didn’t like that really made a difference in my day-to-day. A lot of us have leaky gut which means there are A LOT of things we can’t tolerate. The good news is that you can heal a leaky gut. So, even if you have to give up cheese, wine, and cider donuts for now, it may not be forever and working on healing your gut now may support you in enjoying those things in moderation in the future.

I figured out what to eat and not to eat by using the elimination diet outlined in Recipes for Repair. It’s designed to help you learn what does and does not trigger inflammation in your body. I liked it because, unlike other elimination diets, you never have to stop eating food. Because, as I learned later, I was full of parasites, I had to eat a lot of food to function. I could basically eat all day long. The nothing but juice or smoothies for three days required by a standard elimination diet felt like a huge barrier. I also didn’t have to go completely grain-free on the diet because it allows brown rice and a homemade gluten-free flour mix. While paleo diets are a great healing tool for many, especially you auto-immune kiddos, being almost paleo has been a good fit for me.

Life Coaching. I hired a coach with money from savings when I was super sick and unemployed. I wasn’t even sure how I would pay for the whole six month contract but I had enough for the first three and that seemed like a good start. It was by far the best investment I ever made in my healing. At the time I was coming off my fourth health-related burnout and I didn’t want to crash and burn again. I felt that there had to be a way to make a contribution in the world without working so hard that I fell apart. While I was initially very skeptical of life coaching, I trusted my coach Jeremy to help me figure out what that magical career path might look like. I did figure it out but the most valuable thing I got out of coaching was seeing clearly where I was getting in my own way. I was terrified of asking for support. I grew up understanding that it was something you just did not do, like picking your nose in public or accepting seconds from a dinner host without being asked twice. Even though I was so sick that taking a shower and caring for myself was really hard, and my parents lived overseas, I would not ask my friends for anything other than borrowing their vehicles to go the grocery store. Everything else felt like too much. I would literally lie in bed with the phone in my hand, wanting to dial my best friend, sobbing because I felt like I could not make the ask. Since getting coaching, I have built an awesome support team. And, since I have started asking for what I need, my friends have a better understanding of how they can help and they regularly offer support. I moved three times in 2016 and friends helped out every time. Recruiting that help took just an email and a few text messages. My family is also much more supportive now that I am open about how I’m feeling, and ask them for what I need. Life is easier and WAY less lonely.

Meditation and Prayer. I began meditating in 2014. A housemate took the time to show me his practice and a few months later I finally started doing it myself. I started with 10 minutes a day, in bed, in savasana (lying down face up) first thing in the morning. I used the Headspace app and then Insight Timer. When I started feeling better, I transitioned to sitting up and today I practice in viparita kirani because it helps my feet stay happier throughout the day. It has definitely made me calmer and way less stressed. All my biggest triggers, from family to doctor’s appointments to standing in airport security lines, are so manageable now. I’m so much more present to myself, my body, and the people around me. Even on the days when my meditation time is full of jumping, racing thoughts, the day is better than if I hadn’t done it at all. In March I also began praying each night before bed, on the recommendation of a Vodun priestess. I was not given detailed instructions. I was simply told to light a candle next to a glass of water and ask for support in curing my “monster,” which is what she called my illness. I usually express gratitude and ask for support. A few times I have asked for answers in my dreams and have then had really enlightening dreams. And, if nothing else, I have noticed is that I sleep better after I pray.

Coffee Enemas. These are especially good for folks with Lyme because they stimulate the production of glutathione which helps the body detox and get all the toxic garbage (dead bacteria, heavy metals, dead parasites, etc.) out. Coffee enemas are prescribed by holistic practitioners for people suffering from candida, cancer, fibromyalgia, parasites, and chronic fatigue. Probably other things too! I have found that much like drinking coffee, the enema gives me a nice little boost in the morning. I personally can’t handle drinking coffee anymore so it is nice to have something to put pep in my step. Even on days when I wake up feeling like a pile of bricks, post-enema I feel like a normal person. It takes time, about 45 minutes a day if you include brewing the coffee, but I’ve found it to be totally worth the time. Coffee enemas can be dangerous if administered incorrectly and they aren’t a good fit for everyone. Definitely don’t try them without the support of a practitioner you trust. If you aren’t sure how to find someone who can support you with it, send me an email. 

I also practice yoga at least three times a week and get acupuncture every two weeks to keep my internal energy moving. I find it really supports everything else I'm doing for my wellness. Acupuncture has really helped me with acute issues like fighting off a virus or getting good night's rest when I've been struggling with sleep. It can also provide a great reset after traveling or a particularly stressful time. I went weekly for six weeks after Trump's inauguration. 

How to get through the next four years

Here’s a text exchange that I had with one of my clients last night:

Client: Could you tell me that it is okay to go to bed before 8pm as an adult?

Me: You have my blessing. It’s definitely okay, and necessary when your body is going through what yours is. Rest well!

Client: Thanks. :-) I somehow feel guilty for not poring over every piece of news (political or otherwise) given the state of world affairs...but I just can’t.

I have been having this conversation A LOT lately. And I love that this client reached out to me because she is not the only one feeling guilty for wanting to pull away from the news. But in terms of supporting her own healing, her instinct was right on.

Stress makes us sick and “stressed” doesn’t even cut it when describing how most people are feeling right now. This is a time of huge transition for all of America, our president has done some really painful stuff, and there’s more to come. Everyone’s nervous system is totally f-ed. A lot of people have been feeling a stress response triggered by the news on a daily basis since before the election. That’s bad for everyone’s health but it’s especially bad for us spoonies because we managing our own stress in the context of community, national, and global stress.

How the hell are we going to survive this mess?

Here is my three part prescription for staying well and continuing to heal in the face of this epic stress pandemic:  

1. Have a daily mindfulness practice and stick to it. Nine out of ten people who come to me for coaching say they want to be more present. Practicing mindfulness is how you get present. You can practice meditation, yoga, breathing exercises, walking in meditation, whatever you like. Let it be something you can do daily, ideally at the same time everyday. It doesn’t have to be long or special or done in a certain way or according to a certain tradition. It could literally be as simple as staring at the wall for five minutes after you get up and repeating the mantra “I am experiencing good health.” I was really sick when I began meditating and I did started doing 10 minutes a day, in bed, right after I got up. It was a huge game changer and brought my anxiety to almost zero in just a couple months. Regular practice really takes the edge off.  It may feel challenging to get started, but I believe in you!  Do something, notice what you feel in your body, and express gratitude for that feeling, whatever it is. Insight Timer is an awesome tool for keeping track of your mindfulness practice because it gives you stats on how much you are meditating. It also has hundreds of guided meditations, music, and soundscapes. You can also find your friends on the app, check out their stats and see how they are doing in their practice. This is really awesome if you want to set up an accountability buddy system.  If sitting down to meditate feels challenging but yoga feels like too much, check out Yin Yoga.

2. Put yourself on a news diet. Specifically, limit what news you consume to particular mediums at particular times. I know, I know. You don’t want to be ignorant and consuming news is an important part of your routine. I get it. Truly. I started watching the evening news with my dad when I was two. I felt like Peter Jennings was my second father and I wept when he passed away. Nearly all my heroes are journalists. But, consuming headlines all day makes it nearly impossible to be fully present in your life because it triggers significant emotional and stress responses. Professional journalists and people who work in the media develop ways of being with the news that work for them so that they can stay on top of all the news. For the rest of us, it’s just not healthy. And if  you’re on a healing journey, or in recovery, you cannot afford to go on a superfluous emotional rollercoaster everyday. That’s right, I said it was superfluous. You are not inhumane if you don’t expend energy every single day feeling sad or angry about the state of your fellow humans. Humans are messy. There will always be things to be sad or angry about. You need that energy. And you really need that energy if you are going to go take action to make the world less messy. There is nothing to feel guilty about so create some boundaries for yourself. It might mean turning off notifications on your phone or limiting your Facebook or television time. I encourage you to experiment and see what works for you.

3. Drink a lot of tea. Black tea contains L-theanine which can create a calming sensation and there are a lot of great herbal teas that work like anxiety busters and do wonders in calming the nervous system. And just the act of preparing and drinking tea can make you calmer.

No one says it better than my boy Thich Nhat Hanh:

“Tea is an act complete in its simplicity.

When I drink tea, there is only me and the tea.

The rest of the world dissolves.

There are no worries about the future.

No dwelling on past mistakes.

Tea is simple: loose-leaf tea, hot pure water, a cup.

I inhale the scent, tiny delicate pieces of the tea floating above the cup. I drink the tea, the essence of the leaves becoming a part of me.

I am informed by the tea, changed.

This is the act of life, in one pure moment, and in this act the truth of the world suddenly becomes revealed: all the complexity, pain, drama of life is a pretense, invented in our minds for no good purpose.

There is only the tea, and me, converging.”

What are you doing to take good care of yourself in these trying times? Share in the comments below.

To Spoonies in America on the Eve of Trump's Inauguration

This was originally published on The Mighty. View original post. 

Dear Spoonie Heroes,

These are scary times. We don’t know what’s going to happen to the Affordable Care Act or other government programs we rely on and care about. You have a right to be worried – for yourself, for your neighbors, for the country. But, I urge you, don’t let that worry get the best of you. It will make you sicker. And no one understands that better than you.

Never has there been a more important time for us to practice self-love and take the best care of ourselves that we possibly can. From a fuller well, we can better support ourselves, our spoonie tribe, and the other people we love. Tensions are high, people are freaked out. I’m sure you’ve seen it on your social media feeds and felt it out in the world, if you get to leave the house. We are more sensitive and we need to do all that we possibly can not to absorb the stress of others. Drink tea. Meditate. Say your mantras. Breathe. Breathe. Breathe. And then breathe some more. In doing this, we can be examples for our friends and family who may not be as skilled in the art of self-care and stress mitigation as we are. Let’s face it, we’re the experts.

If you’re anything like me, your chronic health challenge has taught you a thing or two about what’s most important in life. Maybe you care less than you used to, or none at all, about other people’s opinions. This is because you know that caring about that is a waste of your precious energy. Let us demonstrate our knowing by taking action – personal, political, community, whatever is accessible. We are powerful. Now, more than ever, we must stand firm in that power and share it with the world.

Keep healing like a boss.

Why Everyone with a Chronic Illness Should Have a Vision Statement

Having a chronic health condition often requires you to live differently from your fellow homo sapiens. As so many of us know, it is very easy to get upset about those differences. Even the most positive among us struggle from time to time.

I'm feeling better than I have in years but my internal dialogue sometimes sounds a lot like this:

“I wish I could go on that backpacking trip.”

“I would kill someone to eat pizza right now.”

“I’m sooo sick of taking a million pills everyday.”

When this is what’s going through your head all the time, it can be hard to keep your eyes on the prize - your life goals, the thing(s) you are healing or staying well for, your raison d’etre. Sometimes we do not even know what the prize is anymore because plans changed when we got sick or injured. And, when you are not crystal clear on what the prize is, it’s more difficult to be kind to yourself, stick to self-care routines, and make meaningful changes in your routine that could really get you somewhere.

If any of that sounds familiar, you need a personal vision statement. The process of writing it can remind you, or help you get clear on, what is most important to you. Once you have it and read it daily for a month, you will begin to remember why it's important to take all those pills, stick with the tedious physical therapy exercises, or stay on hold for ten minutes five different times in one marathon call with your health insurance company.

Furthermore, once you are clear on why you want to heal, it will help you enroll others in supporting you. This is true because you will see more clearly where you need the support of others to fulfill your vision, and you will be better prepared to communicate your vision to others so it lights them up and they want to support you. The response you get will sound like, “hell yeah I want to help you start walking again so you can fulfill your dream of taking your daughter to Disney World,” or whatever it is you would love - starting a business, traveling with your sweetie, writing a book, the possibilities are endless.

My favorite way to write a vision is in the first person, in the present tense, and with very specific, vivid details. It could sound like this:

I am so pleased that I started my own upscale dog clothing line. I love the people I’ve met in the industry and my flexible schedule allows me to take care of myself and my family with ease. My favorite part is getting to do so much work from home, in my silk pajamas, with Tex the beagle at my feet.

Let’s assume the person who wrote this is currently working a so-so part-time job and feels pretty sick most of the time. Even though this vision as reality feels far away, they can see themselves in it right now, and that’s where the power is. It is something to get excited about it.

And, when you write your vision this way, you are adopting the mindset of someone who already has what you want. Then you can ask yourself, "what would someone with this vision do next?" I promise you that, with a clear vision, whatever actions you take will be much more focused than they would be otherwise. That focus saves a ton of energy and, when physical and mental energy are in short supply, conservation is essential.

I lead online vision-writing workshops to support folks in learning how to get clear on their vision and start writing it down. You should come! Learn more here. 

Celebrating the past year, no matter how awful

It’s the end of the year, and the beginning of a new one. A lot of people are saying 2016 was the worst. There was quite a bit of upheaval in human society and it doesn’t look like things will be all roses next year either. I really appreciated this piece on happenings worth celebrating in 2016.

But no matter what is happening politically, geopolitically, or even within our own orbits, it is important for us to honor what this year was for us. Maybe it wasn’t the worst for you personally. Maybe it was actually pretty great. Celebrate that my friend, even if only with yourself. Or if the year truly totally sucked for you, you can choose to find something to celebrate, perhaps what you learned from all that suckage and how it made you stronger.

Personally, I have a lot to be grateful for this year.  I went from looking into the price of wheelchairs to running somewhat consistently. I went on a backpacking trip for the first time in years. I shifted the focus of my business to serve more of the people I really love (kickass people with chronic illness), moved into a really fun house with six quirky roommates, and met the sweetie of my dreams. I also reconnected with several dear friends. Believe me, there is a lot I’m displeased with but there’s also a lot I’m celebrating.

Someone told me once that what you’re doing on New Year’s Eve when the clock strikes midnight will cast light or shadow on the rest of your year. I’ve taken that to heart so I try to be intentional about what I get up to. Twice I’ve done a special New Year’s Eve yoga class that ends at midnight and in both cases the following years were especially good. This year I’m choosing to celebrate with a liver flush (with my herbalist's blessing) and one of my favorite rituals. I picked the flush to demonstrate my commitment to strengthening my body and the ritual to cleanse my mind and heart. I’ll be burning two lists: one of the things that held me back in 2016, things I want to let go of, and another of my hopes for 2017. In past years I’ve done this around a fire with friends. This year I’ll just be setting them on fire and stomping them out in the snow solo. Friends are great but I’m still pumped about it.

Tomorrow, I’ll honor the new year by revamping my life and business vision statement.  This will give me something to push me forward when things get rough in 2017, because they will. I’ve found visioning to be THE MOST useful tool in my healing journey, not only to serve as a pick me up when I’m challenged but also because, when I’m clear on what I’m working towards and healing for, decisions are a million times easier. And, as anyone with chronic fatigue and/or brain fog can tell you, anything that brings ease to decision making is a huge blessing. Visions are also a powerful antidote for despair.

To share the joy of vision creation with others, I’m hosting another session of my free online vision writing workshop for folks with chronic health challenges, Crushing It 101, on January 17. Participants will have the opportunity to learn about the power of visioning, start crafting a vision, and get feedback on it from me and other participants. It’s a fun way to start getting clear on what’s most important to you and connect with other folks who are on a healing journey. Learn more and sign up here.

What are you celebrating in 2016 and how are you honoring the transition from one year to the next? Please share in the comments section below or join the conversation on Spoonie Superstars.

How to get good sleep

The subject of sleep has been coming up a lot in my client sessions recently. Getting enough quality sleep is such a crucial part of healing that I felt compelled to pull together my favorite tricks for a good night’s rest. These are mostly geared towards falling asleep. If you’re having issues staying asleep, or you’re waking up a lot, definitely consult a professional. It could be a endocrine or adrenal issue, sleep apnea, or something else that requires medical attention. If you have a sleep disorder, you can do all the right things and still not sleep well so definitely get some support. To read more about the science of sleep and sleep disorders, check out the National Sleep Foundation.

Try these to get yourself in the mood for sleepy time:

1. Take chamomile as a tea or tincture. A lot of people assume it’s not enough but don’t knock it ‘til you try it. If one does not do the trick, brew two tea bags at a time and let it steep for 3-5 minutes.

2. Journal before bed to get all your remaining thoughts from the day out of your mind. It does not have to be long to be effective. You might also keep a gratitude journal, which has been proven to help with falling asleep. In general, keeping a pad of paper or a journal by your bed is useful to write down ideas or to-do list items that come up, or to write about your dreams in the morning. Keeping a dream journal can be very illuminating. (It may be too wooey for you, but if you’re struggling with sometime, ask God, the Universe, the spirits, or whatever you like, for answers in your dreams and notice what comes up!)

3. Practice yoga nidra. Also known as yogic sleep, yoga nidra is the state between sleeping and waking. Listening to a yoga nidra recording before bed can get you in a state of deep relaxation so it’s easier to transition from a crazy day into sleepy time. As a bonus, it can also help with anxiety and PTSD. There are tons of guided yoga nidra recordings and videos out there but I recommend starting with Insight Timer. It’s a free app with yoga nidra recordings of all different lengths, among other guided meditations, music for meditation, etc. Practicing a few yin or restorative yoga poses can be really nice as well. Here’s a yin for sleep video to get you started.

4. Stop using electronics one hour before bed. I know it’s hard, especially for the more tech loving folks, but I believe in you. (You might consider moving your Instagram, Tinder, or Facebook time to breakfast. And yes, you should also eat breakfast.) If possible, leave your phone outside your bedroom. If you’re not a doctor, a firefighter, or someone who must have a phone near the bed, get a fun alarm clock. If you Google “fun alarm clocks,”  you may be amazed by what’s out there. Get computers and modems out of your room too.  Reading is a great way to wind down but save your saucy page-turners for non-bedtime reading so you aren’t tempted to stay up past your bedtime.

5. Make sure your bedroom is cool, between 60-67 degrees.

6. Block out noise with a white noise machine, fan, or humidifier. Ear plugs are great but not ideal for daily use.

7. Block out all light. Blackout curtains are great and eye masks are a good tool for sleeping away from home when you have less control of your surroundings. Ideally you don’t have any electronics in your room but if you have a humidifier or TV or anything that emits any kind of light, put a piece of tape or a sticky note over the light.

8. Experiment with aromatherapy solutions. Rub vetiver essential oil into your feet. Keep a lavender sachet by your bed. If your nose gets really dry or stuffy at night, put an essential oil diffuser next to your bed so that the vapor rolls over you while you sleep. Fill it with lavender, frankincense, and eucalyptus essential oils. Myrrh, thyme, and oregano oils are good anti-microbials if you’re trying not to get sick, and tea tree oil is supposed to be great for a runny nose. I haven’t tried that one yet!

9. Establish a calm bedtime routine you love. It doesn’t have to be long.

10. Quit caffeine. More on that in this other post.

Are there other things that have really helped you? Please share in the comments below!

I struggled with sleep for years and tried a lot of different sleep aids before I realized that I was doing myself a lot of harm and looked for other solutions. I took muscle relaxers, cannabis, and some prescription drugs before I turned to over-the-counter supplements. As I learned, those aren’t always good either. After a couple years of taking melatonin every night a practitioner told me that in doing that your body can stop making it’s own melatonin. Oops! Then a rheumatologist with a fancy non-prescription drug database helped me see that I might have been aggravating a mild heart condition by taking L-theanine every night. I live and learn. Today I just take a tincture with valerian, passion flower, wild lettuce and indian pipe. It doesn’t knock me out but it does make me calm and supports everything else I’m doing to get in the sleepy zone. If you feel like you need sleep aids, don’t make the same mistake I did. Consult a professional, whether it’s an MD, a holistic practitioner or an herbalist to find something that’s safe for your body given the conditions it is working with.

Good luck out there and sleep well!

Want to change your life? Start with a gratitude practice

For folks who celebrate Thanksgiving, the holiday may include sharing what you are thankful or grateful for. But why limit this expression of gratitude for one annual holiday? Expressing gratitude regularly, especially daily, can have a huge impact on our lives. Specifically, the practice can improve our physical and mental health and allowing us to show up more consistently as kind, generous, and empathetic.

How does this work? Expressing gratitude helps us shift away from the negativity bias, or our brain’s natural tendency to focus more attention on bad thoughts, unfortunate circumstances, what we hate about people, etc. By regularly and consistently choosing to be grateful, you begin to experience life as abundant and you will see more of life’s gifts instead of life’s challenges. As Maria Nemeth explains in Unleashing the Energy of Money, when you experience life as abundant, you naturally want to give back to maintain the flow of giving and receiving. In this way, regularly expressing gratitude also makes you more generous.

According to a 2011 study in Applied Psychology: Health and Well-Being, writing down what you’re grateful for before bed can help you sleep better and longer. So between sleeping better and seeing life as abundant, establishing a gratitude routine can really support you in showing up as your best self. If writing in a journal isn’t your thing, ask someone in your life to be your gratitude buddy and see what it’s like to express gratitudes to each other once a day for 10 days in a row. You can do it in-person, on the phone, or even via text. The impact is the same. Then sit back and enjoy as you begin to see your life as lighter and brighter. :)

Why you should quit caffeine ASAP

Photo Credit: Coffee Geek TV

I used to say that I could not live without coffee, cheese, or alcohol.  “My mother is Belgian, these things are part of my heritage and I won’t give them up,” I said to anyone who suggested I try cutting them out of my diet. I gave up gluten in 2011 and that already felt like a huge sacrifice. Four years later, after doing an anti-inflammation elimination diet, I also gave up caffeine, alcohol and most dairy.  It turns out I CAN live without them, and quite well actually, you might even say better. I could write a book about the havoc all three can cause in your body but today I just want to share how much quitting caffeine helped me in my healing journey. 

I like to attend a few yoga workshops a year to get inspiration for my teaching and to deepen my own practice. The single best thing I ever got out of a yoga workshop actually wasn’t directly related to yoga though, it was Tommy Rosen’s advice to quit caffeine.  It was almost an aside, something he said offhandedly between telling his own story and taking us through poses. Something about the way he said “you should quit caffeine, it will change your life,” really stuck with me. His thing is yoga for recovery. That man was addicted to just about everything (caffeine likely the LEAST destructive) and yoga was the most powerful tool he found to get clean.

It took me a few years after the workshop to quit myself because my initial reaction was, “that’s nice but that’s not going to happen for me.” When I finally got too sick to work, it seemed like a good time to try. After all, without work, I didn’t have the pressure to “be on” all the time. Even then, I tapered down slowly and in the last month I was drinking just about a thimble’s worth of coffee one time in the morning. I’m not a cold-turkey kind of girl.

Once I got completely caffeine free I saw how right Tommy was. It really changed my life and marked a huge turning point in my healing journey. I saw that I had been hardcore using.  Coffee was my favorite drug for covering up my physical and emotional symptoms. I would regularly start to cry on my way to work, a natural reaction to chronic fatigue and overwhelm, and then my coffee would kick in and I felt human again. I was known to drink 48 oz of coffee to get through the day. I realized in retrospect that the biggest problem with that was how effectively it disconnected me from my body. By covering up most of the signals my body was giving me, like when to rest, what to eat and not eat, I was making all the underlying problems way worse. All the meditation and yoga in the world wouldn’t help me connect with my body as long as I was drinking that much coffee.

Like I said, it took me awhile, and the absence of caffeine necessitated some other lifestyle changes. I now have to take sleep more seriously, for example, and rest instead of powering through fatigue. And when I say “have to” I mean that I now choose to listen to my body over covering up the signals it is so kindly giving me. And the coolest thing is that overtime I have been rewarded for making that choice. Now I have more energy and mental clarity, things I previously thought I couldn’t have without coffee. If there is something I want to stay up late for, I can do it without any assistance.

Every once in awhile I think I’ll be okay having a little green tea but I find it’s never worth it. The consequences outweigh the short term happy feeling. I have better strategies for dealing energy dips. Sometimes naps are called for, and I took a lot of them for a long time, but now that I’m feeling better, I usually opt for a walk, vigorously shaking my arms for a minute, or taking viparita kirani at the wall. I was once told that taking viparita kirani for 20 minutes is as restful as two hours of sleep. It’s untraditional, but I often meditate in that position to combine two wellness practices in one. Other things that have been great about quitting coffee: I have way fewer headaches, almost no pain, and I save a ton of money!

If that is not enough to convince you, this little piece by Forbes writer Travis Bradbury succinctly outlines how caffeine can disrupt sleep and your emotional intelligence. 

All that said, caffeine is an important tool for some folks, like migraine sufferers. Cutting it out completely may not be the best solution for everyone.

How to be money savvy with your wellness

A newly diagnosed Lyme patient remarked to me recently that it seems like you have to be rich to get better. That’s especially true for Lyme, but for a lot of folks with chronic illnesses or complex health challenges, many of the most helpful healing modalities are not covered by insurance. But even if you’re sticking with practitioners who are covered by insurance, the out-of-pocket costs can really add up. That said, there are ways to get well without spending beaucoup bucks. Also, sometimes you can just get lucky. I’m not sure how my doctor managed it, but I was able to get 21 months of oral antibiotics covered by insurance on two different insurance plans, one of which was the state insurance we have here in Massachusetts. Nothing fancy. The most I ever had to pay for antibiotics was $60 a month, and that only happened a couple times when I had to get Tetracycline compounded. Everything else was less than $10 a month. I was fortunate in that regard but I still needed to find ways to afford all the wellness treatments I wanted to pursue. Since I’ve been on my healing journey for 15 years and without a regular income for several of those years, I had some time to learn a few things about cost saving.

Here are some of my favorite tricks for saving money and keeping costs down:

• Get really clear on what your insurance does cover. There are plans that cover acupuncture, chiropractic, physical therapy, etc., and if you are not beholden to a particular insurance through your employer, you might shop for one that offers coverage for the visits you need the most. If there is a practitioner that you really love, look for insurance that they take so it’s easier for you to see them.

• Connect with a support group and/or find other people in your community with your condition or similar conditions. This is the best way to find all the best deals on practitioners, products, and services. Real people can tell you everything the internet cannot. Also, there are a lot of practitioners who fly under the radar to protect themselves, and you really need to know a gal who knows a gal to find out about them.

• Seek out practitioners with sliding scales. A lot of sick people are broke and healers know that. I have found herbalists, coaches, and acupuncturists with sliding scales.

• Choose “community” options for acupuncture, chiropractic, and other treatments whenever possible. I was able to find community acupuncture with a sliding scale that starts at $20 a treatment. Private treatment in my area is typically $80 a session. Small group coaching is also an option for folks who cannot afford one-on-one sessions.

• Consider trying the natural route. Herbs can be way cheaper than prescription drugs. Emphasis on “can be.” It really depends on who you’re working with and what you’re taking.

• Work with your community to do bulk ordering/resource sharing. Let’s say you want a Rife machine, which retails for about $800. You can find other people in your community who want one then buy it and use it collectively. Or if you need to order herbs, tea, vitamins, etc., it’s cheaper to buy in bulk, so ask around for neighbors or friends who want the same meds. You can also do this with CSAs or food delivery services, which can save energy as well as money. Finding buddies can be a good vehicle for affordable semi-private yoga, personal training, and other at-home fitness services as well.

• Make use of coupons, credit card points, and loyalty cards. Look for health food stores with loyalty programs or memberships and look for sales on the things you use a lot. Pure Formulas offers free shipping and gives you a few different discount codes when you start ordering from them. For what I buy the most, I’ve found the best prices on Amazon so I share a Prime account with family to get free shipping. I got an Amazon credit card, which gives you money back to use on Amazon, and use that for almost everything in my life. This helps me knock some money off my herb orders on a pretty regular basis.

• Keep track of your medical expenses. If you spend more than 10% of your income on medical expenses, you can deduct them from your taxes. The list of what you can claim is pretty extensive and includes transportation to and from doctor’s visits, as well as fees for “non-traditional medical practitioners.” You need to itemize to do this, meaning you can’t take the standard deduction and you can’t include anything that you pay for with a Health Savings or Flexible Spending Account. Read more about how to claim your deduction here.

• Seek out free or low cost clinics. NeedyMeds is a great resources for finding free, low-cost and sliding scale clinics near you.

• Be willing to get to the root cause of your symptoms. This is a controversial one and something I’ll write more about in a future post. Allopathic medicine is designed to keep you alive and treat symptoms, not root causes. This means that you could spend your whole life, and whole paycheck, treating symptoms without ever getting to bottom of what is causing them. Sure, you might feel better, but you might also be needlessly spending $300 a month on prescription drugs that make you feel better when you could spend the same amount to actually treat something and eventually be done with it. Choosing to search for the root cause requires some grit and ruthlessness, but it can save you a lot of money and suffering in the long run.

Five Things You Can Do to Get the Most Out of Your Doctor’s Visit

When it comes to health matters, it’s normal to have a lot of questions. But, since doctors visits are so short these days, it can be a challenge to get all your questions answered in one visit. If you’re some with a chronic condition who goes to the doctor A LOT, it can become a very frustrating cycle of expending lots of time and energy but getting few results.

In my 15 year healing journey I lost count of the number of times I got shooed out of an office, in tears or almost, because I was leaving with no answers, diagnoses that did not make sense, or prescriptions that I was not interested in taking. Some doctors were very kind to me but still did not have much to offer in the way of answers or treatment.  Eventually I learned that being prepared saves time, conserves emotional energy, and can help you get more out of your visit. And, when you are clear on what you want out of a visit, you’re more likely to get what you want out of it.

Here are five things you can do to have a better doctor’s appointment and bring more ease to your health care experience over time:

1. Have Your Answers Ready: Whether you are seeing a doctor for the first time or the one hundredth time, you can be certain they will ask you at least a few questions and there is actually a list of standard questions that you can expect in any doctors visit. Having your information ready can save you and your doctor some time and energy. This list includes a lot of the most common questions. The holy trinity in this case is:

• Recent test results. This includes blood, stool, urine and other tests as well as all relevant imaging. A neurologist told me recently that going to a neurosurgeon without a report of your lumbar MRI is like going to the dentist without your teeth. Holding on to x-rays and big stacks of images is not ideal but you can request a DVD of MRI and similar testing at the time when you have it done. Then you can just bring the disc with you when you go to the doctor.

• Detailed medication list including dosage. Be sure to have non-prescription medications on there too. You might also include other healing modalities you are doing, like physical therapy, acupuncture, etc. so you don’t have to remember to share that information.

• Symptoms. If you have any kind of chronic symptoms, definitely keep a symptom diary. Like if you have headaches and you’re going to see a neurologist, you’ll want to have at least a few weeks worth of daily information on whether you had a headache, what you took for it, whether that helped, associated symptoms, etc. This will help the doctor (and maybe you too) see more objectively if there is a pattern to the symptoms. If you have something complex like Lyme or MSIDS, symptom-tracking can be daunting but start small, be compassionate with yourself,  and find a system that works for you. People I know use Google forms, excel spreadsheets, smartphone apps, and good ole pens and composition notebooks.

2. Bring Your Medical Records With You: Since doctors do not have a lot of time, make a one page summary of your diagnoses, symptoms, and recent tests for reference. Bring that, along with additional records that could be relevant to the visit. Chances are the doctor will not look at them, but it’s good to have them on you. This is especially important if you are seeing a new practitioner or anyone outside your usual network because they may not be able to access your electronic medical records. If you do not have copies already, be sure to get them, particularly your test results, from your primary care doctor as far in advance as possible. Sometimes the request process requires release forms and a significant waiting period. Even though the hospital I visit now has a great electronic medical records system, I keep paper copies of my records from previous doctors and hospitals and bring the relevant test results with me to all appointments in a little red folder, just in case a question comes up about the MRI I had 5 years ago. You can easily digitize everything and have it in your phone or on a tablet so you are not lugging a binder, or for some of us, an entire library around. Also, intake forms can be brutal and having medical history easily accessible (especially things like surgery dates) makes the process easier and likely more accurate. Having everything with you is also useful  if you have trouble with memory recall or someone else is helping you fill out paperwork.

3. Take Notes and Have a Record Keeping System: I mentioned my folder above. I also keep an electronic record of test results and notes from appointments in Evernote so I can reference it from my phone anytime. OneNote and Google Docs work well for this too, and there are tons of smartphone apps out there (like MyChart and MyMedical) for accessing your records and/or keeping track of your own data. A lot of medical centers now have their own apps so it is worth checking with your doctor’s office. If you see a lot of different practitioners in a lot of different networks, you may prefer to keep everything in one place rather than having to login to different apps. Set yourself up for success by taking the time to create a system that really works for you. If it is hard to use, you will not update it or use it the way you want to. Not sure what to choose? This is a great task to ask family, friends, or fellow patients for support on. Be sure to jot down a few notes before each visit on how you have been feeling and what you want to ask the doctor. First make a list of all your questions, then pick your top two or three must-knows in case you do not get through all of them. Always ask if there is a way to follow up by email with the doctor or another person in their practice in case you have questions later, because you probably will.

4. Do Your Homework: This applies to before and after the visit. Let’s say you’re going to a cardiologist for the first time to ask about rapid heart beat. If possible, familiarize yourself with common relevant heart conditions and testing before the visit so you have some idea of what your doctor is talking about when you get there. After the visit, you might do some research on what they suggest and what alternatives are out there. And by “research,” I do not mean that you should jump down a rabbit hole of online forums and Facebook groups until you end up confused and in tears. Maybe WebMD or the Mayo Clinic websites for the basics but I really recommend going to the library, asking other patients in a support group, or consulting other doctors and healers you have access to (friends, family, etc.). Also make sure that you do whatever homework the doctor assigns you. It is really easy to leave a visit with a list of things to do, like exercises, diet changes, keeping a symptom diary, etc. and then never actually do any of it, or wait a long time to start doing it. This is another place where good notes and/or smartphone apps can be helpful but it could also be as simple as asking a friend to text you after your visit to ask if you got any homework from the doctor, then have them text you a week later to make sure you are doing it. If you do not have anyone like this in your life, try posting your ask in Spoonie Superstars, a support-focused Facebook group I started for folks with chronic illness.

And with all that said about doing your homework, remember that it is your body and you get to decide what to do with it and put in it!

5. Bring Someone With You: If you do not have a condition that requires hands-on assistance from another human, it might not occur to you to bring a buddy to a doctor’s visit. But let me tell you why it is the best. A friend or loved one can provide emotional support, take notes for you, help you fill out forms, help you remember to ask your most important questions, and help you debrief whatever diagnosis, advice, or prescriptions the doctor offers. The right person can also help you make an otherwise hard or icky appointment way better by taking you out for smoothies afterwards, for example.

If you’re someone who is on the hunt for a diagnosis and seeing a lot of doctors, be sure you’re doing everything you can to take care of your emotional health in the process. Seeing doctor after doctor is taxing, stressful, and often traumatic, especially if doctors are making you feel like your symptoms are all in your head. I saw a therapist for years when I was hunting for a diagnosis and found her support invaluable. For years, she was the one person in my life who validated what I was experiencing. It was worth seeing her regularly just to have her say “I believe you. You’re not crazy.” At one point she told me that if all I did was come to her office twice a month and cry, she would love that. And cry I did! Mindfulness practices and support groups are amazing too. I always meditate for at least 5 minutes before an appointment and write down how I want to be in the interaction, i.e. truthful, kind, and compassionate. This helps clear my mind and makes me less likely to take my frustration out on a doctor.

Six tips for bringing ease to the holiday season

Whether you celebrate any of the winter holidays or not, the fall/winter season can be especially challenging for those of us with chronic illness. People are busier and crankier, maybe even the ones we rely on for support. Doctors' offices are crazier as people try to use up their flexible spending accounts and paid time off balances to do all the doctor’s appointments they’ve been putting off all year. For those of us on special diets, we may find that everywhere we turn there is special food we can’t enjoy. SO MUCH OFF-LIMITS FOOD!  

If you are traveling for the holidays, especially to see family, that can add an additional layer of stress, routine disruption, exhaustion, and physical pain. Explaining your wellness needs to others can feel like a slog. I’m headed to Colorado for Thanksgiving to meet my partner’s family for the first time and I CANNOT WAIT to explain coffee enemas to them!

So what is a spoonie to do to find some holiday cheer in all the madness?

Here are six actions you can take to bring some ease, and maybe even joy, to your holiday experience:

• Make yourself a survival kit. What are the things that bring you joy and make you feel better? Think: favorite scarf/socks/shirt, essential oils, pump up or chill out playlist, tiger balm, favorite teas, photographs, a handwritten note from a sweetie or best buddy, etc. I keep a list on hand of things that make me feel better when I’m not at my best. It’s surprisingly easy to forget what works in a low moment.

• Create your own holiday rituals. This could be for you and just you, like blowing bubbles once a day or getting together with your chosen family. If you do something with others, make sure it meets your needs and preferences, i.e. zombie B movie marathon with paleo-only snacks. It really can be anything!

• Ask for support. If you’re going to be away from home, ask your hosts about the accommodations in advance so you have time to prepare and pack accordingly. Will there be a place to do your physical therapy exercises? Can you eat the food or should you plan to do some cooking? What is the sleeping situation like? It may seem like you’re being needy asking for these things but you are actually giving your host a huge gift when you give them the opportunity to support you. No matter where you are around the holidays, ask a buddy, or maybe a few buddies, to check in with you so you can vent, cry, or celebrate as needed. Sometimes you just have to tell someone how much you love, or loathe, Christmas music, or how crazy your aunt Susan is. 

• Support others. Offer to help someone with something or even just check in on them. Holidays are a dark time for many and a simple text message, cute animal photo, or phone call can make all the difference. Supporting others in small ways will help you stay present and less mired in your own circumstances.

• Get all your medicine, supplements and appointments in order. If you do not plan for holiday closures or the vacations of your practitioners, you could end up without the care or meds you need. Get everything in order as soon as possible so you don’t end up in a bad spot. If you don’t know what the plans of your practitioners are, find out and ask what you should do if you need support urgently.

• If traveling, make a list of what to bring and prep. Save the list and use it every time you leave home.