Kelly’s story is all too familiar to many RA patients, years of mysterious symptoms that come and go at random, doctors dismissing symptoms, some even insisting she was “perfectly healthy”. It’s a tale I’ve heard again and again in the forums from RA patients and one Kelly tells with great care and relatability.
As she goes on to describe the reaction of those around her, their disbelief in her suddenly disabling symptoms, and how that made her feel a bit crazy, it’s like I am reading my own story. The author nails down so many familiar aspects of life with RA and the fight for diagnosis, understanding and proper treatment.
After a brief explanation of why she advocates for taking the “arthritis” out of RA and replacing it with a more accurate name, Rheumatoid Disease, her conviction to better patient care is clear. Urging readers with RD to not be satisfied with the answer “it’s only RD/RA,” she encourages patients to ask for better answers and more complete care.
Rheumatoid Arthritis Unmasked aims to increase the understanding of people without RD, specifically doctors. Her belief that “the general medical perception of RA is wholly inadequate,” is spot on in the experience of this rheumatoid patient. Diving into the scientific medical literature she both debunks commonly held beliefs about RD and informs the reader of things that are commonly missed, mislabeled, or ignored. Urging the reader to seek more complete answers than “probably RA” Kelly points out that having a disease which can affect a body part does not always mean what is affecting that part is that disease. Sharing with the reader what is and what isn’t known, Kelly creates a clear, broad picture of Rheumatoid Disease, the many varied forms it can take, and the complex nature of treating a disease that is so varied in its presentation.
Jam packed with information and references from the scientific literature, Kelly has truly created a valuable resource for doctor and patient alike. If you have, treat, or love someone with RD/RA I highly recommend you add this to your reference collection.
For more information about Kelly, her book, and her mission visit rawarrior.com
One of the hardest things about life with chronic conditions is it feels like I am constantly battling medical professionals to get the outcome I want. I know some of those battles are a result of nothing more than my stubborn belief that nature should always get a shot at fixing the issue first, not a popular opinion among medical professionals. It causes them to see me in a certain light. I’m one of those fruity people who use ginger and peppermint to cure a variety of symptoms, add to that the fact that I am 100% upfront about my use of marijuana to manage my pain, and, well, they think I’m some sort of tree-hugging nutjob. (To be fair, I do hug more trees than the average adult.)
Few doctors (two so far) understand the science behind the remedies I use, fewer still suspect I might. If I’m using it, you can bet I’ve looked into how it works and why it works, that’s just who I am. I need to know the why. Really, I think that’s the biggest reason my doctors and I butt heads, because they don’t often seem to care about the why, they are focused on the byproduct, I am looking for the source. Nowhere in medicine is the source more unknown than autoimmune disease. Scientists simply do not know why 80+ autoimmune diseases exist. They don’t know why they crop up, what drives them, or how to stop them. For most of those diseases, they have a handful of medications they use by trial and error until they land on one that helps the patient and is tolerated by them. Medications for disease management. It seems cures are few and far between in the modern age.
Really, that is the root of most battles between my medical team and I. They are interested in treating symptoms, I am interested in root causes and how they can be stopped. If not for that, I honesty don’t know how much longer diagnosis of RA may have taken. I spent years in the symptom treatment loop before finally getting the proper testing to find the root of my discomfort. Years of pain and inflammation as my body quietly destroyed itself. Years of damage that, you guessed it, I’ve since been battling to get fixed, because, even once the ultimate cause of an issue is known, the standard plan of care for most chronic illnesses is wait and see, apply meds, and the occasional bandage if something really dangerous crops up, but overall, just live with this. Mange the disease, watch it do what it does, keep taking those meds and be glad its not worse.
Well, that doesn’t work for me. I know too much about the wonders we can do to be satisfied with just watching my body break down while others get new limbs. If a car accident victim can have a new hip, then dammit so can I. Just because my disease is doing exactly what it is known to do does not mean we can’t call in a repair crew to counter that. Once joints are destroyed by rheumatoid arthritis it really makes no difference how much you treat the original underlying cause, the RA, the damage is done. The new root of that pain is the damage. No amount of controlling RA will stop that pain or increase the ability of that joint to function.
In a world where all we had was medicine, we’d be stuck with that damage forever. Luckily we live in a world filled with miraculous technologies and doctors who can reconstruct a surprising number of human parts. A world filled with orthopedics, physical therapists, and others who can help a body regain mobility stolen by chronic disease. Professionals who, in combination with your rheumatologist can help improve the quality of your life. Professionals they will not likely refer you to unless you ask. So, assemble that team, add more experts, get the preventative and reconstructive crew members on your team. Don’t ever let them tell you that’s just RA, you have to live with it. It might be RA, but you don’t have to accept everything it hands out. You can fight back, you can work to prevent immobility, you can get new parts to keep moving.
How have you fought for your health and mobility? Share your battle stories. If you would like to read the story of my battle for a hip and the beautiful outcome of that fight, check out Celebrating Mobility.
“I won’t be getting much done today or tomorrow, I might do a little laundry tomorrow but probably not much more,” I say to my husband as we talk about the plan for the week and the household needs.
“Oh, right, you have infusion today,” he replies, his words conveying his understanding of my needs in the simple way that partners do. He is not only acknowledging that I won’t be home much today, as the trip to infusion is long and quickly sucks up an entire day. He’s also telling me he knows I will be wiped out and in need of rest. His words say he understands and gives me space to have these bad days. Not that he rules me, mind you, he’d find the idea of anyone trying to be in charge of me and how I choose to spend my time and energy laughable indeed. No one knows me better than this man I chose to build my life with. As a result, no one understands my needs like he does. His understanding comes not only from the love he has for me, but also from my open and honest communication with him. He has learned what I need because I told him. He knows how I feel, because I share my feelings with him. Those are the foundations of a solid relationship. They are also the keys to being understood.
Life with chronic illness is challenging with a strong support system. Without that support it may feel impossible, at least that is the sense I get when I read the struggles of those who do not get the understanding they need from those they live with. In a way I cannot really imagine what that is like, my family is a supportive and understanding bunch, they have always been there with a helping hand whenever it is needed. It’s truly only my own stubbornness that gives me a bit of insight into what it’s like to struggle alone with your problems.
I did not start this journey open and honest. In fact, like every other dysfunction in my life, I started by hiding it, well. Even after diagnosis, when I had a name for what was happening and an understanding of where it was headed, I kept things to myself, especially the pain. The result? Absolutely no one understood what I was dealing with. No one knew I was hurting all of the time. No one knew I was afraid for my future and my mobility. No one knew I was looking down a long road of struggle that veered sharply away from the active life I imagined for myself. No one knew I worried I’d never be well enough to go back to work. No one knew I was already far down the path to RA disabling my hands. How could they? I never said a word about any of it. You see the problem with hiding your problems is, you get really good at it. I slapped on my I can fight this attitude and diligently researched all the possible fixes, and cried alone in the bathroom. I dove headfirst into changing my diet and self-care routines, and spent my nights anxiously awake worried about my future. As I tried to patch myself back together, I was quietly falling apart.
I wish I could say there was some aha moment, some turning point in which I learned to reach out, but that’s just not the case. The change came slowly. It started with the things I couldn’t hide, like a hand that refused to open, hard to hide that. In time, I learned it was okay to be vulnerable. I didn’t have to be superwoman, those who loved me would adjust, and the adjustment would be good for all of us. You see, the people who love us, want to lessen our burdens. They want to help when they can, comfort when they can’t help and most of all, they want to give and receive understanding. The key to all of that? Be honest and open about what you feel, need, and dream of. Be truthful about the things that cause you too much pain. If you do that, you may just find the support you needed was waiting for you all along, I did.
I’ve noticed a somewhat alarming, unhelpful shift in the way we view health. It seems that the list of people we expect to keep us healthy includes everyone from our doctors and nurses to the president and the random dude at the grocery store who’s opted out of wearing a mask. While some of these might indeed make sense, solving medical issues without doctors and nurses for instance, might be somewhat out of your realm of expertise and possibility, others are far off the mark. Expecting complete strangers to protect you from disease, for instance, seems like a hell of a gamble to take. I mean, have you met people? They are self-centered, self-absorbed, and all too frequently, not too bright. If they are what stands between all of us and certain death, well we better bend over and kiss our asses goodbye.
In the scramble to lay the blame for our health outcomes on someone, it seems we have missed the person with the most control. Among all those we lay the burden of keeping us healthy on, the one person who seems to be missing is, Us. Make no mistake about it, in the fight for your health, you are the soldier on the front line. You are calling the shots, making the choices and taking the chances. You are choosing how to build your defenses. I can’t help but wonder, as the world demands governments and unmasked strangers protect us from an invisible invader, if we aren’t just trying to shift our responsibility to someone else.
The uncomfortable, unfortunate truth is no one else is in charge of keeping you healthy. There is no nutritionist in your kitchen advising you on what to eat, no personal trainer turning you out of bed to workout in the morning, no nurse on call to catch you smoking those cigarettes you swore you quit smoking. At the end of the day, and throughout all the waking and sleeping hours of your life, it is you who oversee your health. If you are wolfing down big gulps and tasty cakes while glaring at the unmasked folks in your local grocery parking lot who are endangering your life, well, friend, you need to take a look in the mirror and take a good hard look at the dude who makes you most vulnerable to disease. That my friend, is you. How do I know? Well, it’s also me. when it comes to treating my body with love and care my track record is terrible.
The fact is, in the fight against transmittable disease, the best defense is a strong immune system. A fact that a quick look at the list of the vulnerable populations should confirm, overburdened immune systems are more susceptible to disease. This means the best thing any of us can be doing right now, better than wearing masks, distancing, and all the sanitation in the world, is taking better care of our bodies.
It is no secret that the American population is unhealthy. The acronym for our typical way of eating SAD (Standard American Diet) says it all. The way we care for ourselves is indeed sad. With diets high in sugars, refined carbohydrates, and a higher proportion of “generally considered safe” chemicals than vitamins and nutrients, it is no wonder that a disease who impacts the unhealthy has us running for the hills. If you are not yourself one of the vulnerable populations, chances are you live with or frequently visit one. There is something seriously wrong with that.
The fact is, despite centuries of medical breakthroughs and one of the largest health care industries in the developed world, Americans are sicker now than they have ever been. Heart disease, diabetes, autoimmune disease, pulmonary diseases all run rampant through our society. We are stressed, depressed, sedentary, and struggling. In the fight to protect our health we definitely have a long way to go. Luckily there is hope. Armed with the right information we can be healthier. It starts with what we put into our bodies.
You are what you eat. Know that, believe that, eat as though that were the truth, because quite literally, we are built from the foods we consume. Eat your veggies and fruits, grab an apple instead of a candy bar, put down the potato chips (that one is directed at yours truly) and choose good food to build your body with. Eat good fats and plenty of protein, both are important building blocks for strong bodies. If there is a food group you just can’t stand, supplement for it, find out what vitamins you would be getting from the greens you simply can’t chew without gagging and get another source for them.
Drink water! We are largely made of water, it facilitates too many of the processes that our body does to even count them. Feeding cells, removing waste, providing structure and permeability to every little bit of our body, water is an especially important part of a healthy system.
Last, but certainly not least, get out and get some sunshine on your skin! You may think only plants can benefit from sunlight, but the truth is vitamin D is created by our bodies when we are exposed to the sun. Vitamin D also happens to be one of the most important vitamins for immune function, so don’t miss that D, get out and take a walk in the sun and absorb away. By taking the wheel and being in control of our own health, boosting our immune systems, and generally taking good care of ourselves, we can protect ourselves from the danger of COVID and many other diseases, several of which make us more susceptible to germs. While hand washing and masks can minimize your exposure and risk, spending just a few minutes in public with all these super special mask wearers will quickly reveal why that should not be your only line of defense.
Life with rheumatoid arthritis (RA) is certainly no walk in the park. A disease marked by chronic pain, fatigue, and damage that leads to loss of mobility, the symptoms alone can be a lot to handle day to day. Being mindful of your physical limits, treating yourself with care, and a bit of trial and error can go a long way toward living better with RA.
In a world where we are expected to do it all, learning to pace yourself is perhaps the hardest aspect of managing chronic disease. It can be hard to let go of that idea, that you must be the one to do all of the things, but the fact is, the best treatment plans in the world will not be enough if you do not learn to listen to your body and respect it’s limits. Add the fact that those limits change from day to day and that you often don’t know you’ve overdone it until much later, and it’s no surprise that this is one very challenging balancing act. It’s a balancing act worth perfecting. Slowing down and stepping back are going to be key to your long term health. Both will allow you to preserve the quality of your life longer. Trust me when I say the job that leaves no energy or physical strength for the rest of your week to week or day to day life, is not worth whatever you are bringing home to go along with that pain and exhaustion. Finding work that is better paced for your body may well help keep you working longer, a very real consideration as 60% of RA patients become disabled within 10 years of diagnosis. If you want to avoid being part of that statistic, you are going to have to learn to listen to your body and treat it with kindness.
One important step for learning to accept your limits is learning to say no when you need to. You know your body, better than anyone else. If you know it will take 3 days to recover from an activity, say no. If you know going for that 3 mile hike today means you probably won’t be able to work tomorrow, say no.
No one else knows what your body needs, they can’t make these choices for you, and, perhaps more important, they do not have to understand why you do. Living inside a body that will literally stops parts from moving when its overexerted, is something few people will understand, no matter how much they assure you they do. That is perfectly alright. The truth is, you can’t really understand RA until you live with it, and you wouldn’t wish that on anyone. So bow out when you need to, those who love you will adjust to the new, boundary setting, you.
One key to setting and maintaining limits, will be asking for help when you need it. After all, dinner has to be cooked, chores need to be done, life will not suddenly get less messy simply because you can’t keep up. If anything, the opposite is true. So, learn to ask for help, and to let people help you when they offer. This is no time to be stubborn, take it from one who’s had to learn that lesson the hard way. It’s alright to let people help you. Far better to accept help than to burn yourself out doing laundry and cleaning floors and not have the energy left to play with your adorable kiddos. Sharing the household responsibilities will allow you to save your resources for more enriching things.
Don’t stop inside your household though. Asking for help must also extend to the outside world, especially those who help manage your medical condition(s). If you don’t tell your doctor you are struggling to walk, stand, or hold onto things, they won’t know. Not knowing means they won’t offer you resources that can help you. There is nothing much worse than suffering in silence for months only to find that a little physical therapy once a week could have eliminated the struggle. Ask me how I know. 😉 Learning to be completely open and honest with your doctors about what is challenging you, what is working and what is not, will help them to give you the best care possible. As important members of your RA team, they need all the facts. So stop telling them things are fine when they are anything but.
Speaking of doctors, one of the best pieces of advice I have for navigating medicine is, don’t be afraid to fire your doctor and move on. All specialists are not created equal. You are going to need a team of doctors you feel comfortable with, who listen to you and offer solutions. If they are dropping the ball in any of those areas, move on. Quality care requires a good doctor-patient relationship. if you don’t feel like they are listening to you, find someone who will. This is your health, your mobility, you are going to have to be in charge, but since you are no medical expert, you are also going to need help. Finding the right professionals will greatly increase the quality of life you are able to achieve.
I know, you don’t want to give up the cake. I don’t want to give up the cake either. Unfortunately cake is sugar, and things that your body turns into sugar. If you are fighting inflammation? Sugar is like gasoline on that slowly smoldering fire, it will cause a flare up. There are no exceptions to this rule, believe me, I have looked high and low for that loophole! The fact is, every single food we eat either nourishes us, aggravates our system, or both. Figuring out which foods your body tolerates and which cause it to pour gas on the fires of inflammation is not always easy, but it is worth it. Check out the diet and autoimmune disease section if you are ready to try and figure that out. As a general rule, if it’s high in sugars, even natural ones, it might be best to avoid eating it. Notice I said avoid not cut it out of your life forever and ever. We are only human, we are going to have that slice of cake now and then, at least I know I will. Choosing to limit that, will prevent you from constantly stoking the fire. A little bonfire now and then, may be worth the trouble, but burning your house down daily, is just foolish. I do not recommend it.
I do recommend fueling your body. Managing any chronic health condition without considering diet and nutrient balance is kind of like walking around with a blindfold on. Sure, you can probably get around the house alright like that, but you are going to get quite a lot of bumps and bruises trying to navigate, and it would clearly be easier if you could see what was in front of you.
Don’t ignore nutrition. We quite literally are what we eat. In the home that is your body, food provides the building blocks, if you are not giving the construction crew the materials they need, your house is going to be a carpenter’s nightmare. Without the right nutrients, your body cannot fight inflammation, it cannot build strong bones, it cannot fight off infection. Nutrients are involved in every single process your body carries out. A well balanced diet can help reduce fatigue, pain, anxiety, and stress. It can help you get more restful sleep. It can help you rebuild what RA is taking apart, as well as help to control inflammation. So, eat your veggies, proteins and good fats. Consider supplementing some of the vitamins that immune systems need for healthy function like Vitamins A, C, D, E and Zinc. Contrary to popular belief, feeding our immune system will NOT cause symptoms to worsen, in fact, several of those nutrients are involved in shutting inflammation OFF, quite essential and nearly always depleted in those of us whose bodies insist on turning inflammation back on.
When everything hurts, it can be tempting to be as still as possible, maybe even staying in bed or couch-bound all day. Unfortunately, that is about the worst thing a person with RA can do. The painful truth is, the more you keep your joints still, the worse they are going to feel. You have to move your body, gently and lovingly, but move it you must. Start with gentle stretching and simple joint movements. Roll your shoulders, wrists, and ankles, wiggle your fingers and toes, bend knees and elbows. If it is jointed, make it move at least a dozen times a day, minimum. If you can’t get up and do that, no worries, you can do all that in bed. For a great bed exercise routine and many others check out exercising with autoimmune disease.
If you are already active, mobile and ready to begin an exercise routine, start slowly, be gentle with yourself, and listen to your body. Be mindful always that overdoing it today may mean you can’t it move tomorrow. You want enough movement to strengthen your body and keep your heart healthy, but not so much that you destroy your joints and lose mobility. Stick to low impact exercise to protect your joints and future mobility. Be especially gentle with any actively inflamed joints. Exercise and physical activity is another tough balancing act, but perfecting it is well worth the increased mobility and reduced pain of a more physically fit body.
Nature Has Answers-
Have you ever told someone you had RA only to have them tell you their Grandma has that and she cured it with some plant? If you’ve had RA for more than a week, I bet you have. If you are like me, you probably thought their claims far fetched at best. After all, if turmeric was so great my doctor would recommend it, right? Unfortunately, probably not. Of the now dozens of doctors who have been on my medical team, exactly two have told me about the power of turmeric. Not because turmeric is not helpful, quite the opposite, in fact, even the science now agrees, it’s a wonderful anti-inflammatory, but medicine disconnected from nature somewhere along the way. Few and far between are the doctors who blend pharmaceutical medical remedies with natural ones. Considering how many of the medicinal compounds we use are derived from plants, or are synthetic imitations of plants, that seems rather foolish.
Being a lover of both science and nature, who will try literally anything once, I’ve come to find that, although there doesn’t appear to be a cure for RA, there certainly are a great many things that will help reduce its symptoms. As with anything else we use, what works and does not work for people, seems to be entirely individual. Turmeric, ginger, green tea, cinnamon, marijuana, and even a low dose of poison ivy (strange right? it works!) are some of the remedies from nature that keep me moving. I’ve also found hot wax, hot compresses, Epsom salt, and ice to be great for symptom management. So, next time someone offers you a wacky cure, consider it, you may be pleasantly surprised how much it helps you.
Living well with Rheumatoid Arthritis is not a simple path to navigate. There are no one-size-fits-all cures. What makes my body happy, might piss your body off and vice versa. Keeping track of your symptoms, the remedies you use, sleep patterns, and mood, may help you find a better way to manage your wellness. Check out our Free Printable Symptom Journal if you need a way to track and look for patterns. Taking the time to get to know what your body needs to be well, is definitely worth it. You are worth it.
Disclaimer: I am not a doctor, I am just a girl with RA doing my best to manage it and sharing what works for me. Always consult your medical professionals before making changes to your healthcare routine.
We’ve all been there, you don’t feel very well, someone says something that irritates you, and you snap their head off. Not your best moment, but as we’ve all been there, generally forgivable, every now and then. But what happens when pain and exhaustion, and the short temper that comes along with them, become chronic? You snap at loved ones more, which leads to guilt, after all, it isn’t them you are mad at. its the unending pain. It also leads to less understanding and more hurt feelings from the one being snapped at. No one wants to be grouched at all the time. It isn’t fair to pass that pain on to those around you. The fact is, if you don’t learn to control it, you will drive everyone away.
So, how do you find your sunny side when pain attacks? There are a few important things you can do, starting with being pro active about pain management. If suffering in silence is leading to biting the heads off of loved ones, well, that’s not exactly silent suffering now is it? No, that’s more like turning yourself into a ticking bomb, all it takes it someone to light the fuse and BOOM. Don’t be a bomb. Use pain remedies to ease your pain. Even if they only dull it, that offers relief and lowers the chance that you will blow up over nothing.
Along with easing your pain, the next most important thing is going to be honesty. It’s time to stop burying the bomb. Stop pretending its all fine, stop keeping the pain to yourself. No, do not become one of those people who never talks about anything but how terrible they feel, that will send people running for the hills as well, but do be honest about the bad days. Simply letting loved ones know that you feel a little extra touchy today, gives them the chance to walk around that hidden minefield. If they do happen to set you off, they will at least know why. So many of the relationship issues we run into in life are due to misunderstandings. Help them understand you better by being honest.
The next piece to work on is your reactions. Yes, you hurt, yes you are frustrated. It’s entirely natural to be grouchy and snap at people. It’s also entirely natural to pee, but we don’t run around peeing on everyone. Learning to catch the anger before you unload it on the next person to bug you will help keep them around. When you feel the anger building, when the frustration is making you short and grumpy, do whatever works for you to let it out, vent it so it stops building. You might take a walk, write it out, light a fire, do some planned destruction like demo or breaking things that need breaking for a project like a mosaic. You might turn to art or music. Personally, I use walking, writing, and a few lines from a Clutch song:
“So I Take A Deep Breath And Count To Ten,
Ain’t Gonna Let It Get Under My Skin.
Take A Deep Breath And Count To Ten.
Think Of All The Nice Places That I Been”— Careful with that Mic-Clutch
It’s been my strategy for so long, my kids know when Mom’s humming that tune, they need to keep a wide berth! Speaking of counting, when you don’t see it coming, and find yourself about to snap someone’s head off for bugging you, do what the song says, take a deep breath and count to ten, then answer. You’ll find that ten seconds and the deep breath, give you a moment to diffuse the reaction and control your response. Remember as annoying as they might be in the moment, they are not the reason you are so pissy. Controlling your reaction will lead to less guilt later on and fewer apologies.
The final tip for controlling your reactions when chronic pain has you feeling like a jerk, is distraction. Honestly, some days you just can’t quiet the pain. Some days its just going to be there, gnawing all day. One of the best things you can do for your attitude is to step away from it and into a hobby or project that soothes you. Pick up a great book, dig out a puzzle, the fly tying gear, your knitting needles, sink into a great movie or series, color, draw, create, whatever it is that captures your attention, do that. Distraction helps us set the pain aside for a bit, and doing something we love soothes us, between the two, you will find yourself less on the edge and more able to cope.
While its completely natural to be a grump when in pain, no one likes a chronic grump. Using a few strategies to manage your pain-itude will help you be the loving person you want to be. Chronic pain steals enough from us, don’t let your sunny disposition be one of the casualties.
How do you diffuse anger? Share your strategies, it might save a relationship or two.
Have you ever made a decision that change your entire life? Approaching middle age at an alarming rate, its safe to say I’ve made a few of those, for better and worse, in my lifetime. Few have been so life altering as the decision to get my hip replaced. As I approach my one year anniversary with Frank the Tank, the name bestowed upon my trusty implant by my book club tribe, I’m finding it hard to put into words just how life changing that choice was. It turns out, more hinged on that working hip than I knew. Getting it fixed has given me back so much more than the ability to walk on my own two feet without a crutch. it has allowed me to regain parts of my life I feared were lost forever.
RA has stolen a lot from me over the years. Hobbies, career aspirations, time with loved ones, dreams large and small, and of course, mobility. Those who know me well, can likely easily name a dozen things I used to enjoy that I stopped doing. Fewer will know the reason I stopped was that I just could not do them anymore, because the price was too high. At some point, the joy of that hike in the woods was no longer enough to offset the days of agony that would follow. So, I stopped hiking. I stopped camping and canoeing. I stopped escaping to the shore when I needed to sort things out…as I learned to listen to my body, it asked me to stop, and I did. Even though it broke my heart. I told myself that healing doesn’t come without its share of pain, and tried to resign myself to a less mobile life. Always assuming once the meds and lifestyle changes I’d made did their job, RA would loosen its grasp and allow me to get back to them one day soon.
As the days stretched to years and medications provided relief but not recovery, I began to think about the damage that had been done. Even more about the damage I might be doing compensating for that damage. By this time, a cane had become a constant necessity, as my left hip refused to hold up to its side of the deal. Using a cane was causing my already damaged right hand and wrist to become more stiff and sore, my fingers curled, hand unwilling to open fully. I saw a crossroads ahead. I could carry on as is, and lose the use of my hand, stop using a cane and resign myself to a seated life, or, get someone to help undo the damage that had been done. Too stubborn to resign myself to life in a broken body in a world full of medical miracles, I started to push for a hip replacement, knowing long before the first scan that the hip was toast.
Several rather frustrating appointments later, the evidence was in, the hip was very much toast, it would need replacing, it would take a year to find the doctor that agreed with my analysis, that waiting until I was older, as the first ortho suggested, was foolish. Within a month of meeting him, Dr. Brooks would replace my hip, giving me a second chance at a mobile life. Clearly a big picture kind of guy, he immediately expressed his concerns that continuing to use the crutches that I had traded my cane for 9 months before, would in time destroy my already damaged hands, wrists, shoulders, and elbows. I remember holding back tears of relief as I realized, finally, there was a doctor who would help me, one who saw all of me. Not just RA, not just a hip in need of replacing, all of me, the entire patient. For the first time in the 5 years since diagnosis, a doctor asked me what quality of life meant for me. What is my quality life? I told him about the active life I’d left behind, about how much I wanted to do all of those things again. I told him I missed sharing my love of the outdoors with my sons. Without the slightest bit of hesitation, he told me we can do that, let’s start by replacing that junk hip. Finally, I’d found a doctor who believed I should fight for my mobility, one who announced that he was in my corner now and would help me reach my goals.
One hip replacement and several months of physical therapy later, I set down my crutches and took my first steps without assistance. A year later, here I am, walking on my own two feet. It seems like such a small thing, but it truly has changed everything. With two free hands and a working hip, I am able to lug things, move things, and keep up with household chores again. Regaining independence has been a balm to my soul. In September, I took my first walk on a packed sand beach and I cried tears of joy. By spring, I no longer needed a cane, even on uneven ground, as I regained strength and balance. Regaining the stamina and strength to garden, to wander outside, to walk on the beach, has been life changing. No longer simply going through the motions, I am alive again. I’m making plans I could not have even considered a year ago. I can take a walk when I am frustrated and angry. I can say yes when invited on an adventure with friends. I can plan adventures of my own.
It’s been a valuable lesson in quality of life, and living with pain and limits when you do not have to. A lesson about the importance of speaking up and being persistent, of valuing that quality of life enough to fight for it. A lesson I will not soon forget. RA is not going anywhere, it continues to do damage. Never again will I allow it to steal pieces of me without a fight. I’m sure it’s not the last hill I will encounter, but it’s reminded me that the view from the top is worth the climb.
This weekend, I will celebrate Frank the tank with an island camping adventure with my book loving tribe. An adventure I’ve turned down in the past knowing it was just going to kick my ass. There may be some tears as I walk on the dock and board a boat for the first time in years, but they will be tears of joy. Tears of triumph as I return to the sea and the life of outdoor adventures I love so much.
While I try to begin each day with hope that the trajectory of 2020 will turn itself around, it seems like this might be a year loaded with trials and stress. If you suffer from a condition that is aggravated by stress, this is not good news. Add it to the pile right? It seems bad news is in abundance as storm after storm hits our country. With all the fear and life altering unpredictability of a hurricane, to say that the recent events have shaken things up is an understatement. As uncertainty, anger and fear continue to sweep the nation, and we face what will undoubtedly be a rough year (or ten) of recovery and healing, it’s going to be really important to take the time to attempt to manage stress and treat your body well. It is not the time to add fuel to the fire, we’ve already more than enough fires to fight at the moment. Being as healthy as you can, will make whatever comes next easier to survive.
That said, self care and stress management are anything but easy for most of us at the moment. If you are struggling to meditate, exercise, and eat well, you are not alone. Stress tends to bring out our worst habits as we reach for things to sooth our frazzled nerves. Personally, that means comfort food and binge watching sitcoms all day long. Which leads to feeling terrible, as lack of movement and piles of sugar feed inflammation and instigate other autoimmune symptoms. Which leads to…well, eating more junk and less moving, of course because I feel terrible.
Rinse and repeat, throw in a few days of attempting to behave myself and a smidge of exercise now and then, and that describes my life for the last two months. As the shit continues to hit the fan, I’ve become increasingly aware that this is A) not sustainable and B) not helping.
Since tanking my own health and mobility clearly won’t make this situation better, I’ve decided to focus on the fires I can put out, starting with the ones I’ve been dumping fuel on. That means watching what I eat, exercising daily, and managing stress, the three biggest keys to living well with rheumatoid arthritis and many other autoimmune conditions. Now is a great time to work on new habits and healthier responses to stress. With so much of it around, we’ll certainly get plenty of opportunities to practice.
Retraining our stress responses won’t be simple, but it will be worth it. Think about your own stress habits. What crutches do you turn to when it all becomes too much? Try to come up with a list of things you could do instead of reaching for that familiar, but ultimately destructive, soothing habit. Post the list where you can see it, preferably somewhere near the crutch you are trying to put down. That way, the next time you head to the snack cupboard after watching the news, you will be reminded that a walk will help you release the tension without feeding the flames. In time, feeling stressed will make you want to take that walk, just as it now has you reaching for a doughnut. Unlike the doughnut, all the walking will build a stronger, faster you. The way things are going this year, you just might need that speed to outrun the next storm.
When it comes to tackling any heath problem, the support of an experienced and knowledgeable team of health professionals makes all the difference. The more well rounded and varied your team members are, the more likely you are to successfully manage a chronic condition.
One of the longest standing members of my support team, is a dear friend who has been there for me every step of the way, Angela Harrington of WBFL-Fitness. Always a big fan of Angela’s attitude, a perfect mix of empathy, kindness and a dash of snarky realist, I’ve recently decided to make her a more official member of my team. Why? Simply put, I need a kick in the ass. As my friend of decades, I know I can count on Angela’s constant support and understanding. As my health coach? I know I can also count on her to give me the kick in the pants I need to take all of the things we have talked about and turn them into actions, actions for healing.
I recently sat down with Angela to talk about WBFL, her mission, and what she has to offer.
Q. What does WBFL stand for?
A. Workout Buddy For Life Fitness
Q. What drew you to this path?
A. I thought about becoming a personal trainer for several years but never really thought anyone would take me seriously. I even told one of the personal trainers that I hired that I loved working out more than going to Disney World. I did not start taking myself seriously until February 2018 when I met my Workout Buddy For Life, Stacy. She had just started working with the same personal trainer that I was training with and we would pass each other as one was leaving the workout and the other was going into one. I could tell she was apprehensive about being in the gym because it was written all over her face. Since I really hated going to the gym alone, I asked our trainer to introduce us and to give her my number to see if she was looking for a workout buddy. Fortunately, Stacy called me. We started out slowly, working out once a week for half an hour, in addition to our weekly session with the trainer we were both working with. It took some time for Stacy to work up to my level so that we could work together more. I told Stacy that I had just enrolled in the National Academy of Sports Medicine for my certification in personal training, at our trainer’s recommendation. And the rest, as they say, is history… Almost, because Stacy ended up getting her certification with me.
Q. What are your goals for WBFL? Your mission?
A. My goals and mission are for WBFL is to show people their inner strength through their outer strength. Because of Stacy’s willingness to work with me, I was reminded that in one of the group training classes I participated in, there was a woman who considered herself more fit than I was because of my size (weight loss has been the biggest challenge of my life). When the 6-week session was done, the woman came up to me and told me that I made her realize that everyone’s health and fitness journey is different and that she was wrong for silently judging me. I had proved to her that my weight was not going to hold me back as I was stronger and faster than many of the people in the program. The fact that I could do things she could not opened her eyes and her heart. I want to help women find their inner strength by finding their physical strength.
Q. What is the most important thing for people who are struggling with their health to know?
A. People need to know that there is no perfect or easy method to getting their health on track. It is not one size fits all. Some things will work for me that will not work for you, and vice versa. Finding what works, unfortunately, is going to cost a lot of time and money. I know this from experience which is what makes me different than most personal trainers. I have been working out for YEARS, and have tried several different diet methods, replacement meal shake/bars, have had doctors prescribe me weight loss “medications” (that literally did nothing) and even walked the line of considering gastric surgery. It honestly was not until recently that I found something that has me losing weight and resetting my body.
They also need to know that health really does start in the grocery store. What you buy and eat is more important than any exercise – which is super important, but you cannot exercise out of a bad diet (I do not know where I got this quote from, but it is so true).
People need to know that there is no perfect or easy method to getting their health on track. It is not one size fits all.
Q. If you could travel back in time and tell your younger self something, what would it be?
A. I would tell myself that health, nutrition, and fitness are the primary investments that I need to follow through with. We only get this one life; one body and we trash it until medical issues or medical scares force us to change. Also, I would tell myself to become an advocate for my own health, not just my family’s. I let myself think, for years, that there was something wrong with me because I could not lose weight.
Q. What do you struggle with the most personally?
A. I personally struggle with the impressions and stories I put into my head that other people “must” be thinking of me. I am still overweight by approximately 60 pounds, so who am I to tell someone how to eat and lose weight?
Q. What makes you qualified to help people get their lives on track?
I am a Certified Personal Trainer, a Certified Nutrition Coach, and a Certified Behavior Change Specialist. I am currently working on certifications for Women’s Coaching Specialist and Pre & Postnatal Coaching Specialist. From there, I will continue my education and learn new methods through exercise and nutrition.
While my training and education means I have gathered many tools that can help people who struggle with their health, I think the thing that best qualifies me is the fact that I am walking the walk and talking the talk. I do not have my clients do anything that I have not at least tried. As I said before, I know that some things will work for me that will not work for others. I am here to help people reach their health goals by coaching them, working with them to create their own customized program once they have selected which method, of my offerings, and I know how to make their success become a lifestyle. I, also, admit that I do not know all. For that reason, I am a part of a “Mistress-mind” group who are all associated with health and wellness; so, if I do not know the answer to a question, I do have resources ready and willing to help me out.
Q. Any final words for our readers?
“Keep Working Out Buddies, Your Perfect is Growing!”
~Angela Harrington, WBFL-Fitness, LLC.
If you would like Angela’s help getting your health on track, pop on over to her website or reach out to her on Facebook. Her personalized approach, coming from a space of understanding and experience, is truly a unique gift in the health coaching world.
Are you tired of the 24-hour fear train? Of playing hide and seek with germs? Of watching the days of the calendar tick by as you wait for the world to pull itself together? If you’re like me, you’ve had about as much of this circus as you can handle. I’m at the end of the line, getting ready to hop off. I’ve waited patiently for the train to pull into a station where we can all safely disembark. Since it hasn’t even slowed down once in the past two months, looks like its time to tuck and roll. So, I’m going to jump off this crazy train and back into life, or whatever parts of it are still open.
Before you decide I’ve just lost my mind from too many cooped up days, let me reassure you, that’s not it. Not entirely anyway, though my mental health is definitely involved in weighing the decision and one of the driving forces, it’s not because I’m nuts that I am going back to the real normal (you can keep your new normal). I am going back to preserve my mental health, but more than that, I’m returning to my normal life because I don’t believe in living in fear. You either tackle the problem or you run from it, cowering in the corner is not one of the accepted responses in my book. After all, it’s called the flight or fight response, not the flight, fight, or fetal position response. Unless you are being mauled by a bear, the fetal position leads to nothing but peril. It makes you vulnerable. As uncomfortable with vulnerability as the next guy, that’s not a place I can hang out. Honestly, I’m impressed I lasted this long, my fight response is strong. I am not one to back away, let alone turn into a cowering puddle. Nope, I am not doing that. I can’t cower in fear, I tried, really hard, to respect the fear of my loved ones, and play by the new rules, but as the restriction to my life look like they may end by Fall, if we’re lucky, its time for me to go back to living life, dangers and all.
No that was not a typo, I’m going back to my life of dangers, because for me, that’s the reality of life. I’m not blessed with a fear free life, with good health and easy days. Mine has been one of struggle and hardships, of constantly putting on the big girl panties and getting on with it even though it completely sucks. A life of adaptation. A life choc full of danger from internal and external forces. In my experience, you either find a way to conquer the fear of the dangers you face, or turn into a weeping ball, there really isn’t much room for middle ground when it comes to life with chronic illness. Flight isn’t an option when the problem is literally carried inside of you. Good luck getting away. So, live in fear or learn to push through the fear and grab onto the living left in your life.
It’s called the flight or fight response, not the flight, fight, or fetal position response.
Having a disease that could kill me if left untreated and might kill me even with treatments, a disease that weakens my immune system leaving me susceptible to everything from the common cold to an infected toe, a disease which requires me to take dangerous medications that also might kill me, has taught me to handle fear of dying in a way many probably never do. When potential death lies down every path you could possibly choose, when it becomes a constant companion, you get used to it. You become accustomed to knowing you could die sooner than you once imagined. That ticking clock informs many of your decisions, though often not in the ways one might imagine if they can’t hear its incessant ticking. Death lurks in the shadows, waiting, will you walk straight into his arms or run the other way, knowing he’ll still be right behind you? Never a fan of strange dudes who lurk in shadows, I choose to walk the other way. To leave death trailing me, aware he’s there, but not worried about when he might tackle me. As a very wise man once told me, when your number’s up, your numbers up. Words to live by, words I wish I’d heard sooner.
Anxious since birth, I’ve let fear rule my choices most of my life. What ifs have won out over what could have been, over and over again. It seems the saying is true, you only regret the chances you didn’t take. Being sidelined from the career I dreamed of before I ever really took the chance to make it wonderful, haunts my disabled life. Had I pursued it full force, moved somewhere unfamiliar to take any of the amazing opportunities that were available and put myself out there, I might have been in a position to oversee science work by the time my body called it quits. Not working so hard physically might have given me extra years of mobility. The mights and the should haves pile up, forming a wall between what is and what might have been. On the other side, lay many of my dreams. Oddly enough, the constant threat of death brought by chronic disease, is what finally taught me how to live. It reminded me what was at stake. My life. Not only in the biological sense, but in the broader sense, the essence of my life. For life is indeed not measured by the number of breaths we take, but what we do with that breath. I spent far too long holding mine. Far too long holding back in fear.
Realizing it could end any day, really taking that message in and hearing it, changed everything. The mountainous troubles of everyday life shrank, the beauty of the everyday moments grew. Time spent doing the little things became precious as my body became stubborn and unwilling to do the most basic tasks. Eventually, for the transition was slow and painful indeed, fear faded into the background as the fight to preserve my active life took over. Faced with uncertainty concerning the quantity of my life, I did what any sane person would, I turned my focus on squeezing as much quality out of it as I can. This situation? This is stealing quality from my life, and I’ve fought too hard for too long to let it take that from me.
The fact is, I know my days are numbered. I know I am unlikely to get as many as the next guy. I know at some point, there won’t be the option of repairing the damage, and I will be immobile. I know the medication I take might destroy vital organs or leave me susceptible to death by infection. Life has forced me to take chances simply to remain mobile and alive. I’ve made my peace with that. COVID-19? Just another in the very long list of diseases that might wipe me out if I catch them. Diseases those around me frequently pass without even a thought about the danger they have to folks like me. Colds, flus, strep, a bad pedicure, any of that can take me out of the game for good. I could choose to spend my life secluded, on guard against germs…or I can choose to live life with a bit of common sense and caution and hope for the best. Hope? She’s my girl. Through everything, hope has been there for me. Hope keeps me moving forward, even though I can see death in the shadows. She holds my hand when the times get rough and gives me the strength to look fear in the face and say not today.
Today I’m going back to choosing hope. I’m going back to time with beloved friends and family. I’m going back to kissing babies, because babies smell like miracles, and I miss that smell. I won’t be shaking hands, I do like that change, with sore hands that has made me cringe for years, but I WILL be hugging again. I will be hugging anyone who lets me, because if there is anything the world needs right now, it is a nice big warm hug to chase away the fear and remind us we are love.