“Just tell the truth. Adults like truth. Then you won’t get in trouble and you’ll still be able to come over.” I was sitting on my screened porch listening to the neighbors children play. I’d just heard the sound of shattering glass as their baseball broke their garage window. I had to chuckle at the statement, and the irony of the timing of the boys comment. I was out back mulling over my own struggles with the truth.
Adults like truth, do we? I wasn’t as sure as the kids across the street. There was no ball and bat lying in my driveway. My mother wasn’t pulling into the driveway demanding an explanation, poor kids. My quest- to tell the truth or not- wasn’t as urgent as the boys. The lies I tell myself in relation to my chronic illnesses rang in my head. No, my legs don’t hurt too much to do the thing. No, I don’t need to rest again. The lies I told to other people bumped around my mind. Sure, I’m ok to work on my day off. Yes, that late movie sounds like a great idea.
Mostly, my lies are because I want nothing more than to feel normal, like my vague memories of a pre-sick Ellie. Do non sick people feel normal? Is anyone normal? A good friend tells me that no one is normal. I’ve even seen internet memes that say normal is nothing other than a load size setting on a washing machine. I’m not sure I believe my friend. Other people are probably extremely normal. I spend too much time lamenting the loss of my “normal” status.
Out there on my porch, I watch the scene unfold across the street. The kids told the truth. I too, could tell the truth. Nevermind the physical and mental price of the truth. It was for my own good, wasn’t it? The truth in question here is about my latest addition to my chronic illness collection. Should I tell my employer? Was it of any benefit to me? There is no legal requirement for me to disclose this information.
My MS diagnosis is no secret. I informed my employer fairly quickly. At times I’m proud of my decision to inform them. It was my first real step on the road to chronic illness advocacy. Other times I wish hadn’t. I only received minimal support at first, and a loads of disbelief and blatant accusations of faking my condition.
As my MS progresses and new conditions are thrown into the mix, it gets harder and harder to hide, and hiding wasn’t my intention anyway. It all goes back to the normal thing. Once people know, they treat you differently. Sometimes good, sometimes bad. Either way, it is what it is. The difficult decision I now face is to tell them about an even more serious diagnosis. The information could be vital in an emergency, but could also further cloud already rainy skies. I just want to be normal. Do I tell the truth?
Ellie is a 45-year-old woman living in South Carolina. She works as a cashier, but is always dreaming of more, she’s just not sure of what more is. Her favorite hobbies are reading, writing and yarn crafts. Her biggest hope in blogging is to help no one ever feel alone in their journeys with chronic illness, or anything else.
My last child is a worrier. She worries that her classes won’t be far enough apart that she can get to them ten minutes early. She worries that her cats will forget her while she’s gone. She worries that we will miss a train when we travel and be trapped forever in a foreign city where no one speaks English and she will be sold into slavery.
She may have some grounds for that last one. Traveling with me has made for some close calls with trains.
Four years ago, a doctor told her words that gave her new worries, ones no seventeen-year-old worrier should have. Worries about pain, and struggle, and death.
I went postal on the doctor.
I have inherited polycystic kidney disease. The only cure is a kidney transplant, which can take years because the waiting list for organs is so long. Many people die before they reach that magic match point, and most go through the struggle of dialysis several times a week. (Sign up to be a donor. Now.)
I watched my mother suffer and die from it. My daughter has watched me suffer and live through it. Everyone knew the girls had a 50/50 shot at losing the genetic lottery. We just hadn’t planned on buying our ticket on that day.
We went to get results from Beth’s MRI to find out whey she had persistent back pain. (Being a gymnast is usually enough reason.) The physician, who was ethically supposed to only be dealing with the back pain and keeping her business our of anything else, informed my minor child without preamble that her MRI showed the tell-tale kidney cysts.
We knew this. My husband had seen them when he saw the MRI. We knew what it meant. We had decided to tell our daughter at the right time, not at a time when she was already stressed out by college applications, final exams, gymnastics pressures, and life. The doctor usurped that choice for our child. And yes, for the first time in my life, I let a person in a doctor’s office know exactly how I felt about that, at a volume people in the next building could have heard.
I am not a dramatic person. But this was my kid. And someone had just told her she had a new worry for the rest of her life that she was not ready to hear. And she was crying. Mama bear is strong with this one. My eyes crossed and I yelled and I’m pretty sure sparks shot out or my nostrils. It was ugly.
But something beautiful came of the ugly.
Beth cried in the car. We talked. I knew exactly how it felt to get that diagnosis. By the grace of God He put words in my mouth that I did not know I possessed.
“Beth, you can use this either to get scared or to get brave. You can worry about it for twenty years or you can live like you’ve only got twenty years and you want them to count. You can be frightened and let that fear control you. Or you can choose to tell fear you have your huge mountain. You know it now, you have its name, and you can tackle anything else, because what more do you have to fear?”
My daughter is a brave soul.
I have watched her take those tentative steps. I have seen her make courageous decisions. I have known her heart and her fears as she steps out, and she has stepped.
She has looked at experiences that terrified her, like spending a semester in a foreign country, or standing up for immigrants, or learning who she is and what she’s made of (the scariest journey of all), and she has asked the fateful question—
What more do I have to fear?
Beth took something that could have swallowed her whole and allowed it to create power in her instead. She looked this horrible disease in the face and and said, “Not me. You don’t get to take me down. I will not live in worry about you.” She developed deep love for others who have far greater worries than she.
She didn’t step—she strode.
Sometimes, we are graced by God with the gift of children who make us want to stand in awe and clap. Loudly. Ferociously. This is a gift beyond expectation or belief. Five years ago, our youngest child, the worrier, heard a diagnosis that she would have to carry for her entire life. She decided not to let the worry win. I’ll watch her graduate college in two short months, strong and sure, and I’ll clap. Once again, I will be loud for my kid.
Jill is a writer, speaker, pastor, mom of three, and author of five books. She likes to travel, grow flowers, cause trouble, and research her next project. She believes in Jesus, grace, restoration, kindness, justice, and dark chocolate. Her passion is partnering with the next generation of faith. She blogs at http://jillmrichardson.com/.
How will people respond when we share the most intimate parts of ourselves with them? There’s simply no way to know for sure. It’s almost as though we’re standing in front of them completely nude awaiting our evaluation. And while, I don’t make a habit of standing in front of new acquaintances in the nude that is precisely how it has felt.
My husband and I recently relocated from Florida to Virginal for his job. We’ve begun the arduous process of building a new community of friends and connections. For me, this means navigating the muddied waters of deciding what to share when in terms of my health.
If I’m having an IVIG infusion administered at my home while one of my daughter’s neighborhood friends are over should I mention this to the child’s parent? I mean, I probably don’t want the child to go home wide-eyed, reporting “Avery’s Mom had a needle in her arm and was very sleepy.” Even if Avery’s Dad was home and quite capable, is it better to thwart any rumors I might be a junkie from the beginning?
Thus, I’ve stood butt-naked in front of a myriad of near-strangers over this short amount of time. I’m learning there’s something to this “rip the Band-Aid off” method. Most people respond in one of several ways, and over time their responses have little impact on me.
The “it’s not a big deal, stop complaining about it” response- This person just can’t figure out what all the fuss is about. So you have a rare disease or a cluster of autoimmune disorders, you can still go to work, right? Maybe your body is trying to destroy you from the inside out, but they don’t understand why you should get special treatment. If they don’t get to sleep or stay at home all day, neither should you. I mean, they feel tired and have aches sometimes, too. This person’s questions feel more like an interrogation. They talk down to you about your illness while you make a mental note to never bring it up to them again. They make it clear your illness is a lack of trying hard enough on your part. If they were sick like you, they would try harder.
The “I’m going to fix all your problems with this eighty-dollar pill” response- This person assumes you lack the motivation to get better so you’ve never bothered to research potential supplements or possibly live under a rock where you’ve never heard of essential oils or probiotics. They refuse to take no for an answer. Only their “pure” brand can cure you. If you don’t buy it you don’t want to get better. They talk to you as if they are a doctor and you know nothing about your own illness. You make sure they have none of your contact information to send you sales pitches.
The “it’s all in your head” response-This person feels confident in diagnosing you with mental illness, stress, or anxiety, not a medical illness, despite their lack of medical degree. They discount your symptoms, and know you’d feel better if you ate more kale or went for a run even though you’re in a wheelchair. In short, if you lived your life more like them, you’d be fine.
The “my cousin’s uncle’s sister’s roommate had that” response- Inevitably, this person bought a moon rock from Amazon, or did a rain dance in Prague and they’re fine now. Get prepared for some major resistance to your medical plan, because you just need a moon rock!
The “I’m not sure what to do with this information” response- This person is uncomfortable with your revelation and will now hide from you at every opportunity. They’ll offer platitudes and then run for cover. You make a mental note they can’t handle real life and make sure to keep it light from there on out.
The exception to all of these responses is the crown jewel of life, the person who genuinely cares, and the one who offers up a thoughtful insightful question in an effort to better understand. Maybe this person even makes a real offer to help. This person has seen you standing naked before them and stripped their clothes off in response. They’ve met you in your vulnerability.
Maybe we’re all kind of ugly standing there naked, but there’s something really beautiful about being met in our vulnerability, not judged, not fixed, and not hid from, but met.
Perhaps, like me, you have someone in your life that makes you want to pull your face off. Oh, did you think you were going on that super fun trip this weekend? They have a little something to say about that (it’s not an incredibly uplifting something, btw.) Were you planning on getting a few things done today, feeling productive? Think again, because this lady has plans to completely hijack your day.
She wants what she wants, and she will throw a fit.
Here are just a few areas this diva might be coming for:
Sleep Schedule: Remember once upon a time when you woke up in the morning feeling entirely well rested? I know, me neither. The chronic illness diva is here to wreck your sleep cycles. Did you think you were getting through the day without a nap (or three?)? Ha! You’re funny! This diva is going to throw herself on the floor and pitch a fit until you collapse in a heap on the bed and get the rest she wants. Did you think sleeping through the night was the cool thing to do? Nope. The diva wants to watch reruns of Law and Order: SUV at three a.m. and you don’t want to face the diva’s rage do you?
Diet: Were you not hungry for that? Well, guess what? Now you are. Your favorite food? Chronic illness diva doesn’t like it. No more of that for you. Remember that meal the diva told you you’d die without at lunchtime? She’s now decided to punch you in the gut as penance for it between the hours of two and six a.m. Did you eat that thing you love, but she told you not to eat again? Oh, you will pay! Just wait and see what she has in store for your joints tomorrow. The time you couldn’t move for a week was nothing compared to what she has in store for you this time!
Lifestyle: Do you love to travel on the spur of the moment? Are you a night owl? Is the gym your second home? Hold on; chronic illness diva needs a second to catch her breath she’s laughing so hard she can’t breathe. If you’ve tried to do anything on the spur of the moment, like take a shower, or go to the grocery store, since the diva showed up you’ve probably noticed she had something to say about that, too. The diva likes plenty of notice so she can wreck things at the last minute. She’s a peach, that one.
By now, most of us have decided chronic illness diva is the most challenging, least considerate roommate we’ve ever had. Is there any way to rein her in? Yes and no. She’ll always be a diva who wants what she wants. She’ll be harder to please at times than others for no apparent reason. But over time, we’ll learn her patterns and ways, what sets her off and how to calm her down when she’s gotten really worked up. We’ll also learn that sometimes if we placate her, we can gain a good bit of leverage, which sounds eerily similar to some of the real divas in my life.
What about you? What are your tips for dealing with the chronic illness diva?
Growing up, moving was a semiannual occurrence. Sometimes the news of our impending relocation was crushing. Perhaps, my latest love interest had just professed his affection, or I had secured the lead role in the school play (this was never the case for me, but once was for my older brother.) Other times, a move was welcome news, a reprieve from a town I hated and people I didn’t mesh with well.
As a general rule, moving seemed to be sort of a no-notice event in life to me. It happened so regularly in my sphere, and I couldn’t figure out why others made such a big deal out of it. It required two full-sized moving trucks for our family of nine to pull it off twice a year, so I wasn’t quite sure what anyone else was complaining about.
As an adult, my feelings about moving have changed quite a bit. Now, having lived in homes longer, put down roots, and raised children in them, my attachments run much deeper. Leaving one home to start all over again in another feels a bit more daunting then it did when I was a child, and moving twice a year felt like an adventure. Now, moving feels a lot like loss, adjustment, transition, and intentionally embracing the new.
As I’ve walked out these steps –grieving our old life and home, feeling the loss of what was, adjusting to the idea of what would be, transitioning into our new home, and embracing this new life it’s reminded me of each of my various diagnoses.
Which each new diagnosis has come the need to grieve my old life, abilities, what was, time to adjust to the idea of what might be, a season of transitioning into a new normal, and finally a decision to embrace life and my body, whatever it looked like.
Sometimes the diagnosis was welcomed. I knew something was wrong and I was on a desperate mission for answers. Finding the name at long last was a relief, it meant finally someone might be able to aid me, offer some measure of hope and help.
Other times, I was completely caught off guard by a diagnosis and all that came with it. Treatments meant major life adjustments that were difficult and unwelcome. The grieving period for these diagnoses seem to take the longest. I hadn’t known I had a problem, so knowing the name didn’t feel like the answer.
It took time to step back and realize allowing the disease or illness to run rampant in my body unchecked would only allow for more damage in the long run. After facing this truth, I could fully embrace my new reality, treatments, medications, pains, and all.
Each time I moved as a little girl, I met new people, experienced new things, learned about new places, and grew personally. While I often wouldn’t have chosen to uproot my life or be a new student again, in the end, I looked back and knew that I had benefitted.
It’s hard to look at a disease and say, “Gee, I’ve really benefitted as a result of having this in my life. I’m so glad it happened.” The truth is I wouldn’t have chosen these illnesses for myself (nor would I choose them for you.) However, when I look back, I see each one has stretched me beyond my comfort zone, has brought new people into my sphere, has taught me something new, and has grown me.
Each of them has reminded me I can still dance when the music’s not on. When life is hard, and it feels like all the cards are stacked against me, I can still smile. I can still adjust.
3 Factors that Contribute to Chronic Pain + How to Manage it from an Integrative Medicine Perspective.
If you struggle with chronic pain, you’ve likely experienced its impact in various parts of your life. Pain can disrupt sleep patterns, affect your ability to focus at work, deter you from social activities, and leave you with a sense of despair. As an integrative pain doctor I see this regularly in practice.
Finding the right medical help for chronic pain can be difficult. Conventional medicine typically uses pharmaceutical intervention which comes with a long list of side effects, and it also tends to focus on symptoms alone, rather than repairing the contributing factors of pain.
In integrative medicine we address contributing factors including your lifestyle habits in order to reduce inflammation and pain longterm plus support the body’s own natural healing mechanisms.
When I have an appointment with a patient, I spend a full hour discussing their concerns. I primarily cover eight different sections in this conversation including nutritional status, exercise, breathing, sleep, home environment, work environment, stress levels and mindfulness practices.
Below, I’ll be going through three of the most common areas we find links to pain, but you can go through all 8 sections as they apply to your personal health when you download my free personal health assessment.
3 Factors That Might Be Causing You Pain
Most of us are aware that the quality of our health is intricately connected to the way that we eat, and it’s no different for chronic pain. Every single time that you eat something, you change your body chemistry, which can either promote inflammation or reduce it. Certain foods like sugar, processed foods, poor quality fats and oils or red meat are considered pro-inflammatory and should be reduced or eliminated if you deal with chronic pain.
Alternatively, following an anti-inflammatory diet can help to reduce your inflammation internally. This way of eating includes fruits and vegetables in abundance, anti-inflammatory herbs and spices like turmeric and ginger, and healthy omega-3 fats found in cold water fish, chia seeds and flax seeds.
Supplements for Chronic Pain
Nutrient intake as a whole is also incredibly important as certain deficiencies are linked to increased levels of pain.
Vitamin D deficiencies are common for those of us living in the northern hemisphere, but they’re also common in chronic pain populations across the globe. Low vitamin D levels are linked to body-wide inflammation as well as a weakened immune-system. If you aren’t able to get sun exposure year-round, supplementation can help you maintain healthy levels. Look for Vitamin D3 for best absorption and always take it with a source of healthy fat.
Magnesium is another common deficiency often pinpointed by symptoms, such as leg cramps, high blood pressure, constipation, cardiac arrhythmia and even fibromyalgia. The best forms to supplement with include chelated magnesium or magnesium glycinate.
Research tells us that sleep deprivation can induce symptoms of pain, making it crucially important for you to get your 7-8 hours each night.
For quality restorative rest there are a couple of factors you need to consider.
Firstly, you want to give yourself time to wind down. That means turning off electronics about an hour before bed and doing something relaxing. Our laptops, televisions and phones emit a blue light that stimulates the brain and can interfere with sleep. (If for some reason you can’t avoid use before bed, limit your exposure with a blue light filter app – you can easily find a free option)
The second thing you want to do is darken your bedroom. Even a small crack of light can disrupt melatonin production and decrease your ability to fall into a deep sleep. Invest in room darkening curtains, or more affordably, a sleep mask. You should also cover the light from your alarm clock if you have one in your room.
Stress is an unavoidable day to day reality that comes and goes in varying degrees. If you’re someone who feels the burden of stress on a regular basis and might even notice physical effects like changes in your sleep patterns or appetite, you need to start integrating a mindfulness practice. Stress creates a pro-inflammatory state internally, and as you likely know, more inflammation = more pain.
A few stress-relieving strategies I recommend to patients include meditation (even if it’s simply 5-10 minutes a day), a gratitude practice, or yoga or light exercise like walking.
For stress relief, there really is no one size fits all approach. You have to find what makes you feel calm and balanced. The only rule is that you regularly carve time out for that self-care.
I hope you’re able to use this information in your personal life to help manage your pain more holistically. For more information, or if you have any personal health-related questions and need a little guidance, I host a free monthly Q&A webinar session and would love to help support you.
Dr. Heather Tick MD
For over 25 years Dr. Heather Tick has dedicated herself to researching evidence-based holistic treatments for pain and inflammation. A multiple-book author, including the highly acclaimed Holistic Pain Relief – An In-Depth Guide to Managing Chronic Pain, Dr. Tick empowers her patients to live free of pain and full of life. She is the first holder of the prestigious Gunn-Loke Endowed Professorship of Integrative Pain Medicine at the University of Washington and a Clinical Associate Professor at the University of Washington in the departments of Family Medicine and Anesthesiology & Pain Medicine.
When you’re not feeling well, participating in “normal” traditional Holiday activities can be arduous or even impossible. Coordinating annoyingly perfect matching outfits for yourself and your people, scheduling your super-model photo shoot, ordering Christmas cards, and then having to handwrite addresses on each envelope can feel like a Herculean task. Oh, and then you still have to remember to actually mail them out.
If you’re like me, you may miss out on many Holiday get-togethers due to health. Getting Christmas cards from friends and family across the nation can be a great way to connect and catch up. The inclusion of family photos in these cards become a treasured memento.
This year, I wanted to participate in the fun, but without the hassle or pain triggered by all those repeated hand motions.
Cue the discovery of online Holiday cards and invitations via Paperless Post. This was first attempt at online greetings cards, but it certainly won’t be last. The designs are beautiful and the site is incredibly user friendly.
One of the things I love most about it is how easy is it is to coordinate your favorite photos to your cards and invitations. (Or whatever you’re doing.) Once you’ve gone all matchy-match for your photo shoot, you can take it a step further and match the color scheme of your photos to the card itself. (I’m also really excited about debuting some of my kiddo’s graduation pictures via graduation party invites in the spring using this medium.)
Like most online sites, you can pull photos from anywhere on your computer, so even if you haven’t had pictures taken recently or specifically for the card, you can still pull some of your favorites from your computer and proudly display them.
When choosing photos for your cards and invitations, here are a few tips:
Choose at least one photo where faces are prominently displayed: While more artistic shots are a great choice, you’ll want to avoid selecting photos where everyone’s face is turned to the side away from the camera in every shot.
Choose photos from the same photo shoot or with a similar color scheme: In order to avoid clashing, and to give the card a cohesive look, try to choose photos from the same shoot, or with the same colors.
Choose images you feel best represent you and your family: If a picture captures the essence of your family perfectly, use it!
It’s never been easier to show your people (or dog) off to family and friends this Holiday season. Coordinate those ugly Christmas sweaters and have a ball picking out just the right card to pair the photo with!
This post was created in partnership with Paperless Post
Medical Cannabis can remedy chronic physical pain as well as its accompanying side effects that many common painkillers, particularly opiates, do not help or even address.
More than 100 million Americans, or roughly one-third of our population, experience chronic pain. If you experience pain that lasts longer than 12 weeks, you are among this group. Normally your body sends acute, sudden pain signals to your brain following injury to tell you something is wrong. Chronic pain, however, lasts much longer, sometimes with no apparent cause.
Pain is not a one way street. Along with pain, people experience side effects in addition to their pain or because of it. Pain gets in life’s way. Doing simple tasks like fixing breakfast may be near impossible because of pain. However, most pharmaceutical remedies, like opiates, only treat pain itself, accompanied by many adverse side effects. Medical cannabis treats pain in conjunction with treating side effects of pain that opiates can’t or don’t address.
Medical cannabis can help those with chronic pain
Medical Cannabis & Chronic Pain
The Endocannabinoid System
Medical cannabis has proven efficacy when it comes to relieving chronic pain. Over the course of a Harvard led review of 28 studies, cannabis was found to have substantial benefits for those suffering from chronic pain. You can thank your body’s Endocannabinoid system. Endocannabinoids are neurotransmitters that your body produces. They are a natural way your body reduces inflammation. When you consume cannabis, you essentially block endocannabinoids from reuptake into the cell body. When reuptake happens the cannabinoid goes away from the synapse, and so does its abilities to lower inflammation. By ingesting cannabis you keep these neurotransmitters doing their jobs, which results in pain relief.
Medical cannabis’s lack of toxicity and addictive properties make it a safe alternative to pain relievers like opioids
There are quite a bit of options out there for pain relief, the most popular being behind the counter opioids like oxycontin, percocet, and others. Opioid pain relievers efficacy isn’t in question, but they have many side effects, can be addictive, and can cause overdose. On the other hand, users can’t become physically addicted to medical cannabis, there aren’t severe withdrawal pains like those that accompany synthetic opiates, and no one has ever overdosed on medical cannabis.
Medical Cannabis Does What Opioids Cannot
Opioids have one system of action: they block pain signals in the brain by inhibiting reuptake of feel good neurotransmitters like endorphins. Medical cannabis, similarly, blocks reuptake of endocannabinoids, the bodies natural pain reliever. The similarities end here, however. Opiates simply mask the pain signals from being received, whereas cannabis masks the pain signals and helps to actively lower inflammation. Opioids have one system of action whereas medical cannabis contains multiple cannabinoids like CBD, CBC, CBN, and THC that work alongside the effects of the endocannabinoid system to lower inflammation and relax damaged body tissues.
Chronic Pain has other side effects that opioids don’t address, like sleep loss.
Secondary Chronic Pain Symptoms & Medical Cannabis
There are other symptoms of chronic pain besides just the pain itself. Often people experiencing chronic pain have sleep problems, activity withdrawal, lowered immune system, and problems with mood like irritability, depression, and stress. For the chronic pain patient, pain relief isn’t a one step solution, and in fact many opiates exacerbate the user’s problems with side effects. Medical cannabis, on the other hand, has benefits with regard to sleep, has been shown to help stimulate physical and mental activity, can improve one’s immune system, and improve mood.
Cannabis can help improve opioid efficacy, reduce side effects, and help kick opioid addiction.
Medical Cannabis and Opioid Cessation
Sometimes you have to dance with the devil. Since medical cannabis and opioids both act in similar ways, blocking reuptake of feel good chemicals, researchers found that using cannabis alongside current opioid treatment could 1) improve opioids overall efficacy and 2) reduce the needed dose of opioid. Moreover, because the user uses medical cannabis alongside opioids, the same type of tolerance for the opioid doesn’t develop as it would if they took opioids alone. If no tolerance builds up, then no addiction can stake its neurological claim. Essentially medical cannabis can help wean those addicted or dependent upon opioids off of the drugs while still providing the pain relief the drugs were used for in the first place.
CBD, a compound in Medical Cannabis, has been found to have anti addiction properties
CBD & Opioid Cessation
Cannabidiol, or CBD, is one of the many cannabinoids that make up cannabis. CBD can fight addiction. Two studies that examined animals, and humans found that CBD has properties that reduce opioid cravings. Moreover, isolated CBD did not cause dependency or lead to addiction. The key here is that medical cannabis, and CBD especially, does not simply take the role of whatever the user was dependent on, but actually help end their dependence without creating another one.
For many who experience chronic pain, it may seem like there is no end to their addiction in sight. CBD, and medical cannabis in general, can be a guiding light on their road to recovery and independence from opioids. Did medical cannabis help your chronic pain? Comment below!
This website is informational and cannot diagnose or treat illness or disease. Medical marijuana should be used under the direction of a licensed healthcare provider. This post was created in partnership with Theory Wellness.
Just when we think we might be getting a handle on things, our latest diagnosis or setback, we find ourselves reeling. Be it a flare, a concerned call from the doctor, a flagged set of numbers in our weekly blood work, or a day when the pain is seemingly unbearable, it can be hard to remember things might ever be good again. What truths do we hold onto on the particularly bad days? What keeps us grounded? Here are three things I’d like you to remember on the bad days.
1) You are a bad donkey. Seriously. Stay with me. This is a good thing. Not long ago, my son posted a picture of himself in the ER on the first day of his senior year. He laughed about one of the commenter’s notion he was “pretty bad donkey.”
It took me a little bit to realize this was the edited version of “badass.”
You too, are incredibly, “bad donkey” You’ve hardened yourself to overwhelming difficulty, stood up in the face of great pain, and forged a new way, a new you when you could’ve simply spent the rest of your days in mourning. See? Pretty bad donkey, right?
2) You’re made of steel. Like a superhero, wearing an invisible cape, you rescue others as you pull off impossible feats. A couple of years ago, I had a bladder pacemaker implanted. Before they place the actual unit, they do a trial run. During the placement of this trial unit, you are wide-awake. Wheeled into an O.R., given a local anesthetic, a sterile field is created while you lie on your stomach, and then a urologist begins shoving tiny wires into your back and attaching them to your sacral nerve. You have to be awake so you can tell them about the sensations you feel upon placement. Each time the placement is wrong, they pull out and start all over again.
It’s, um, a bit unpleasant. Once they find the proper placement, you wear the unit for a weekend to determine if you’re a candidate for the actual implant. If so, you repeat the entire process, during which, the only time they actually put you to sleep is when they drop a battery pack into your butt cheek. I knew coming out of my trial placement, if I was a candidate for the implant, I was going to be asking for something more than a local anesthetic the next time around.
As they wheeled me out, I watched a woman who looked to be in her late nineties go in for the same procedure after me. I couldn’t fathom how she would bear it. She came out to no one. No loved ones, no friends. The doctor asked her if it had been too painful for her. She replied, “Oh no, it was fine. It was fine.” You are made of steel.
3) You are not alone. I know this one feels like a lie. You’re walking around and it feels like you might as well be a ghost. Does anyone even see you?
Does anyone see or even care about the magnitude of your loss? Click To Tweet We do. We see you and we care. There are so many of us out there who are walking a similar journey. The problem with this is, we’re walking a similar journey so it makes meeting up for coffee challenging. But you can find us on the Internet and in Facebook groups. We might even be your neighbor or your boss’s wife, your cousin’s girlfriend, your son’s teacher. Keep looking.
This week I stood on a wooden platform. Sweaty, eager, teenagers in cut off shorts holding souvenir cups surrounded me. The soundtrack, a cacophony of nervous chatter about what might happen should the coaster become stuck or spontaneously fall apart and the click-click-clack sound of the coaster slowly rising followed by the thrilled screams of riders.
My stepdaughter and I waited our turn in companionable silence. I tried to extract from the dusty old files in my brain exactly how many years it had been since I’d ridden a roller coaster.
The bell sounded, we stepped forward, placed ourselves within the foam seats where a million sweaty riders had gone before. I made a mental note to sanitize my entire bottom half the second our ride came to a halt. The lap bar came down, we inched forward, and suddenly I was twelve years old.
Sitting next to twelve-year-old me was my older brother, Matt. We were at Six Flags in St. Louis riding the “Screaming Eagle” a wooden coaster that sprawled the full length of the park. His presence, the moment was tangible. Our futures were bright. We were young and free. Our dreams were grand. He would grow to be a great man, a Pastor. I would attend his church service every Sunday morning and cheer him on, shout out the loudest “amens” of all.
Twelve-year-old me rode the “Screaming Eagle” with full belief my brother would always be by my side. History gave me no indication to believe otherwise. Twelve-year-old me planned to ride “The Ninja” next and gave no thought to a time in life when Matt’s body would be ravaged by cancer, and I would someday ride wooden roller coasters without him.
Thirty-eight-year old me got a lump in my throat as I exited the coaster and had an overcoming urge to call my Mom and tell her how much I love her.
You may have noticed by now chronic illness is a bit of a wild ride. Many of your friends and family may have chosen to sit this one out. Unlike a roller coaster filled with thrills and frills, this ride we’re on is mostly filled with terrifying ups and downs. If you’re like me, more than anything, you just want someone to sit beside you for the harrowing ride.
When my stepdaughter and I sat down and prepared to launch, I completed my calculations and determined it had been close to twenty years since I’d ridden an actual roller coaster. I confessed to her; I was going to hate the first drop, the one where my stomach would plunge. She said simply, “Just scream it out.”
I can’t tell you how many times during this wild ride of chronic illness I’ve needed someone to sit next to me and let me confess to him or her how truly petrified I was of the part coming up. I can’t tell you how many times I’ve needed them to say, ‘Just scream it out.”
Here’s the truly stunning thing: not everyone I once believed would take the ride with me has, but I have never ridden alone.
Whether it’s a check-in text, a meal, child-care, or physical aid for my body, I have been loved and supported in a way that leaves me breathless. Does this mean I have never felt isolated, alone, misunderstood, forgotten? Absolutely not! It may mean a sudden drop caught me off guard, and I needed to scream it out until I reoriented and realized my people are still there.
The ones who stand beside us may be few, but our lives are forever changed because of their love. Click To Tweet
When the choice is ours, to take the ride with others, or sit this one out, may we chose to ride, to love, to stand beside, to comfort with the comfort we have been given.
To all who choose to stand beside us, to take the ride: Thank you, we love you. Click To Tweet