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

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

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

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

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

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

Why you should quit caffeine ASAP

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

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

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

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.