Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
The season of letting go
What a beautiful thing it is, this season of letting go. Fall brings with it so many obvious changes that apply so well to our human existence, bringing with it lessons, year after year. Lessons about letting go, about leaving behind the pieces that aren’t serving you, allowing them to cascade like so many leaves at your feet as you prepare for the long winter ahead of you. Stealing yourself, pulling your resources inward, stilling yourself and preparing to survive. Trees, bears, squirrels, frogs, insects, all slow down and settle in. Reminding us that it is okay to rest after a long season of work and growth. That if you have done the things needed, you can survive on very little through the long winter.
The birds’ southward flight is a reminder that staying and facing the challenges of the time ahead is not the only option. Sometimes it it better to take flight, to leave before the snow flies and the challenges arise, to seek safer, more abundant fishing grounds. The lake birds especially remind us that it is useless to stay put as the waters freeze around you, that standing your ground is sometimes the more deadly option. The migratory birds and animals remind us that sometimes the only way to survive is to move on. Their southward flight, wrought with dangers, is a reminder that sometimes safety can only be reached by taking a big risk. Sometimes you have to face a world full of predators and give everything you have to reach safe shores.
As the pulse of life slows and the autumn winds blow, we are gifted with time to reflect on where we have been and where we are going. Will we take flight like the goose or settle in for a long winter like the bear? Have we squirreled away all that we need to make it to the next Spring? Have we let go of the things that will only weigh us down and jeopardize our survival? What have we got packed in those bags? Do we need it or did it make the cut because we are afraid to let it go?
Sifting through my baggage this year, which seems to all be piled at my feet (thanks 2020), I have found much that needs to go, old wounds I don’t wish to carry anymore, crosses that were never mine to bear, shame, anger, disappointment, loneliness and despair. There among them are the shadows of the people I used to be, the voices of those who’ve wounded me. I thank them for the space they held for me, for the lessons they carried, even the ugly ones, especially the ugly ones, and ask them to be on their way. I whisper them to the falling leaves and send them dancing away on the wind. Soon, I will gather what is left and offer it to the cleansing fire. As fall deepens and winter descends, I will turn to the resources I have gathered to sustain me, the treasures I chose to draw in instead of cast off. Like the trees, I will spend the winter nourishing my core, resting, healing. When Spring arrives we will be ready to grow and bloom once again.
Immune Compromised In a COVID Focused World- What We Want You To Know
I’m not sure the world has ever been more aware of the existence of Rheumatoid Arthritis. Yet, still, that awareness for most is not understanding, far from. Some may know it is an autoimmune disease, or that one of the medications debated about for COVID-19 treatment is used by RA patients, or that it is a type of arthritis. Few have any idea of the scope of this disease. Of the many ways it impacts our lives and the choices it forces us to make. Of the danger we live with everyday of our lives.
Oddly enough, it was the spreading awareness of rheumatoid arthritis that made it clear to me how little people actually know about RA and other autoimmune diseases. Since everyone seems to suddenly be acutely aware that what they do not know might kill us, I thought it might be a great time to share some of the other things we need you to know, because as much as we appreciate the care you take to protect us from COVID-19, there are so many more dangers we need you to know we face. Many of which, come from you.
Rheumatoid arthritis is a systemic autoimmune disease, what this basically means is that our bodies attack themselves, in many different areas. Though the main symptom of RA is painful, swollen joints, joints are not the only part of the body RA destroys. A rheumatoid arthritis diagnosis means a 60% increase in the risk of heart attack, as the heart is one of the many other things RA attacks. Depression impacts an estimated 46% of patients, as symptoms lead to changes is what they can do and often loss of work. Within 20 years of diagnosis, 80% of patients are unable to work. 10% will be wheelchair or bedridden within 10-15 years of diagnosis. Risk of various types of cancer increase by between 5 and 45%, without medications. Cancer risks associated with some medications are even higher. Life expectancy is reduced by 10-15 years upon rheumatoid diagnosis. The point is, life with RA comes with a long list of dangers and some pretty heavy statistics, and those were just the things our bodies can do to us all on their own.
A distracted and oddly behaving immune system, suppressed by medications, also leaves us open to a variety of dangers from the outside world. In fact, 25% will die of an infection, perhaps from something as simple as a bad pedicure. Tuberculosis, fungal infections, flu, pneumonia, meningitis, all potentially deadly to someone with a suppressed immune system. Which explains why, when COVID-19 came our way, many of us were prepared to avoid it. What we were not prepared for, was the way everyone else reacted. After all, when you walk around in a world full of things that have a 45% chance of killing you, news that a new virus with a 2-7% death rate among the population doesn’t sound all that scary. It was like you told us there was another strain of flu going around, because, essentially, that’s the situation.
Now you ask us all to continue to hide out, apparently indefinitely, and many of us look at those numbers and say, why? Because, you see, we’ve used stats to soothe ourselves for years. That 45% chance we will get a deadly cancer? That’s also a 55% chance we won’t. A disease that kills 7% of the people it infects, leaves 93% alive. Stats like that, are what keep us moving forward and living our lives. It’s knowing that 90% of patients are NOT wheelchair bound that gets us up on our feet fighting to not be that 10% that have to sit for life. Despite the pain, the struggle, and the fact that it might not save us from the chair in the end, we do all we can to avoid it. Including taking medications that just might kill us. Most of which, in fact, have a much higher chance of killing us than COVID-19.
So, while the world seems to have just realized we are vulnerable, we need you to understand, we have always been vulnerable. That cold you went to work with? It could have turned to pneumonia and killed your immune compromised co-worker. That staff infection you’re being treated for, it could kill the friend you shared your hand lotion with, because her immune system can’t fight like yours can. An eye infection could cost us our sight. An infected toe may lead to amputation or death. For the immune compromised, these are all real dangers.
In a world full of deadly germs, medications, and diseases that can kill us, in a body that is often hell bent on doing it’s own part to take us down, one more germ just isn’t that big of a deal to many of us. We can’t give it our fear, there isn’t any left to give, it’s been eaten up by our reality. Besides, stress triggers our bodies to increase the assault, so stress and fear are killers we avoid like the plague. At the end of the day, we can’t live in fear of COVID because that fear might cause the attack on our heart to begin. All we can do is add it to our list of things to be vigilant for along with the flu, tuberculosis, and that bad pedicure. Since the world is full of dangers, and fear is one of them, we tuck the fear aside and keep moving.
Hopefully the rest of you can figure out how to do the same. Hopefully you can carry this lesson with you into the world and make it safer for us every day, not just when there is a pandemic on the news. We hope you learn to stay home when you are sick, to keep your distance and respect people’s personal space, to wash your hands, to sanitize the things people touch frequently, to have a healthy respect for deadly germs. We hope you stop showing up to gatherings with a kid who clearly has the flu. We hope you remember that what doesn’t kill you might in fact be deadly to others and learn to be careful about spreading your germs. We hope employers learn to allow people to take the time needed to no longer be contagious before returning to work. We hope you are all learning that keeping people safe and alive trumps every other “need” society has. You don’t need to take that flu to work, to the basketball game, to the concert, to the grocery store. You can stay home and rest when you are sick, and the world will not come to an end. If you learn nothing else from this pandemic, we hope you learn that.
Do You Know How To Ask For Help?
Do you know how to ask for help? You are probably thinking that Is a stupid question, of course, I know how to ask for help, but do you really? Do you know how to ask for help, or do you carry much more than you can handle and occasionally drop a few things because you “don’t need help”. Do you know ho to ask for help, or do you suffer in silence as your body cries out in pain. Do you know how to ask for help or do you do too much because its somehow expected that you will and you don’t want to let someone down or have them think less of you? Do you really know how to ask for help?
I didn’t. For most of my life, I would carry all of the shit so I wouldn’t disturb the people around me. I would push through the pain and literally destroy parts of my body rather than ask for the help that my body was screaming for. I would push my body far past its limits to lug, tug, drag and do. If I thought I could do a thing, I did, and if I found out partway through that I couldn’t, well, I figured out how to do it anyway. Stubborn much? There is a fine line between independence and being a stubborn jackass, I always did have an affinity for furry beasts. When damage from RA, and being a stubborn jackass with RA, limited that ability to do whatever I thought I could, eventually, I realized I had to learn how to ask for help.
I won’t say it’s easy, because we all know old habits die hard. If you are not naturally a person who asks, or are yourself used to being the helper, it won’t be simple to change your stripes. You will find yourself still attempting the things you cannot do. The key is to start to recognize those times. When you find yourself in over your head, when you find yourself thinking, maybe I should have asked someone to help me, ask for help. Next time you approach that same task, consider asking before you get stuck. There is nothing wrong with needing a hand. In fact, one of the primary reasons we choose to be communal animals is so we can help one another get through life.
For me, asking for help started with the small stuff, my biggest struggle, water bottles and drink bottles in general. I started asking strangers to open them for me, at the checkout, on my way out the door, in the parking lot. At first, I felt both dumb and lame, I mean, look at me, I should be able to open that drink, I’m young and strong, right?
Once in a while someone would indeed give me a what’s wrong with you look, but what I found quickly was, I was the only one who really cared that I needed to ask for help. The cashier didn’t judge me when I asked her to open my water, in fact she simply said “I sure can,” opened my beverage and moved on to the next customer. I walked away, feeling awkward the first few times. As time went on, I stopped feeling strange about it. I am just a girl who needs a drink, who doesn’t want to fight and still fail to get into it. Just like I’d always been a girl too short to reach the top shelf, a girl who used to climb shelves to make up for that fact, who, at some point had started asking strangers for help reaching.
A little soul searching revealed that it was the way I saw my need for help that was the heart of the issue. Being short was clearly not in my control, I had quite literally been born this way, but for some reason, my brain was not as forgiving of my shortcomings when it came to RA, ironic because, honestly, I was pretty much born with that too. Not at all surprising to me at this point, I needed to start with my own perceptions and beliefs about who I should be and what I should be able to do if I wanted to learn to ask for the help I needed when I needed it.
After years of working on that and learning to ask before I am in too deep, I can honestly say I am rarely found in over my head these days. You won’t find me struggling to open a bottle of water, lugging all of the groceries at once, struggling to lift something heavy over my head, or scaling the cupboards to reach something on the highest shelf. If I don’t have a tool to make it easier (I do have many of those), I ask for help. Do you know what I found out when I started asking for more assistance? The people I love, love to help me.
Book Review- Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease by Kelly O’Neill Young
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.
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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
Battling For Care
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.
Being Understood
“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.
Who Is Responsible For Your Health?
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.
Living Your Best Life With Rheumatoid Arthritis
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.
Pace Yourself-
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.
Learn to Say No-
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.
Ask for Help-
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.
Never Be Afraid to Fire Your Doctor and Move On-
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.
You Are What You Eat-
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.
Exercise is Key-
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.
don’t let chronic pain destroy your relationships
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.
Celebrating Mobility- One Year with Frank the Tank
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.
